Not Now...My SPD child is on Sensory Overload!!!

Getting back into a routine...

2011-01-04T19:02:00.002-06:00

I always hate this time of year. Well, that statement may give you the wrong idea. I actually LOVE the holidays, but hate the transitions and the chaos that they bring. The transition from school to Christmas break and back to school was a tough one for my kiddos this year, as it always seems to be.

Just to complicate things, Mother Nature threw an extra added bit of fun into the mix. We had an ice storm hit right before Christmas vacation was SUPPOSED to start. So, the kiddos had two snow days on what would have been the last two days before break. That kind of threw off my plans a bit!

Surprisingly, the 18 days they ended up being off (Yes...you read that right, 18 days!!!) were very pleasant and a lot of fun. And, they got along reasonably well, despite the fact it was way too cold to do much outside.

However, the transition back to school this morning was horrendous! Nate was arguing about what his breakfast choices were. He cried when I wouldn't let him watch tv while he ate, even though we've always had a no tv before school rule. Then he was refusing to wear his coat even though it was in the 20s outside.

Andy on the other hand was moving slow as molasses and couldn't seem to remember his morning routine. I had to keep giving reminders on everything...from brushing his teeth, to finishing his breakfast. What a disaster!

Then of course both boys came home from their first day back exhausted which caused crabbiness, then periods of hyperactivity sprinkled with lots of sensory seeking. I of course get it, and have tried to be very understanding. My husband on the other hand, ran out of patience after about 5 minutes and has threatened all sorts consequences all evening long. I feel like a referee!!!

Now I'm glad to see it's almost bedtime, and thankful that we survived the back to school transition.

Let's hope tomorrow morning goes a little more smoothly!

How far we've come...

2010-11-08T19:58:00.002-06:00

It was about this time last year...the change of seasons...that Nate started to really show symptoms of SPD. It started with his socks. He had to have them pulled up really high, and he only liked a certain style. Then his pants...he wanted to only wear elastic waist pants, and he had to have them pulled up halfway to his nipples like a grandpa. Then he only wanted to wear long sleeves...he couldn't stand for his arms to not be covered.

Yet this year we've had no clothing issues. He progressed from shorts and short sleeves to jeans and long sleeves with no problems. His tactile issues seem to be nonexistent.

Honestly, since we completed his therapeutic listening program, and his course of OT, I really haven't had any SPD issues with him at all. I knew his was a mild case...I mean, he didn't show any symptoms for years and then all of a sudden had a few clothing issues. It really caught me off guard, actually, because I truly thought I wasn't going to have any sensory issues with him.

I'm sure from time to time little issues will creep up, and when they do, I know how to handle them.

But boy, does it feel good knowing that he has come so far in such a short time.

I'll admit, I'm a little scared...

2010-11-02T15:57:00.002-05:00

There's something that's been bothering me lately...something I'm scared of.

I haven't been really vocal about this yet, because I wasn't sure how people would react. I didn't want to be judged. But, I've decided that most of you followers of my blog will totally "get it".

As you know, I'm pregnant with baby number 3. I wasn't going to have any more children. I had come to terms with being the Mom of two terrific boys.

Yet, God's plan was different from mine, and here we are excited to be expecting a baby girl.

This is where the fear comes in. There are so many days that I feel like I already have everything I can handle already on my plate. I often feel like God overestimates my abilities to handle the stress that comes along with having a child with special needs.

I wonder if this baby I'm carrying will also have SPD. I worry that the sleepless nights I endured with Andy will return. I wonder if she'll be irritable and have the chronic ear infections and reflux.

I secretly hope that she doesn't have any sensory issues. And that makes me feel terrible. I've loved every minute of being Andy's Mom...even the challenging parts. I wouldn't change any of it. I've grown so much as a person and I've become a great advocate for my children. I've learned to help other parents who are coping with SPD come to terms with the diagnosis and move forward. I've educated lots of people about what SPD is.

I just feel like I would love to have a child without a diagnosis, and that makes me feel selfish. I should be blessed that this is all I have to deal with. Things could be so much worse. SPD, in the scheme of things, is a little thing. My child is still a bright, funny, sweet boy. He makes me smile every day.

I know that if this little one is born with SPD, I can handle it. I can handle anything. Andy and Nate taught me that. I also know that I will love her unconditionally no matter what.

So, that's what I've been afraid of. It's just my hormones, I know. But, I feel better having admitted it. Thanks for understanding.

Another bad day...

2010-10-26T16:42:00.002-05:00

Today was a no good, very bad day for Andy.

When I picked him up from the bus stop, he was a crying mess because he fell down while running off the bus. To make things worse, his shirt was all buttoned incorrectly because he apparently thought it was appropriate to unbutton it while at school today, and then obviously had a difficult time putting it back on.

It seems like we've hit a brick wall. He had been doing so well, and now we're taking several steps back.

For the third day in a row, he pulled two cards at school. One of the cards was pulled because he was up out of his chair when he wasn't supposed to be, and he "can't remember" why he pulled the other card.

He also had an argument with his "BFF" today. You see, Andy has been taking his BFF with him to OT every other week to join in the activities. Yet, today Andy promised a girl in his class that she could go next time instead. (Andy has a new crush...that's a whole OTHER story). So, apparently BFF got his feelings hurt and doesn't want to be friends anymore. Sigh.

Does it get much worse than that?

I'm not sure what the cause of this is. I hate this part of SPD...trying to figure out why things suddenly get worse after periods of "almost" normalcy.

Friday was the fall party at school, Monday was the start of Red Ribbon Week, today was pajama day...maybe all of the disruptions in his school day routine are catching up with him. Or maybe it's the crazy above normal October temperatures. Or perhaps it's because he didn't have Occupational Therapy at school this week because the OT is on her honeymoon.

Who knows! I just hope, for his sake, that things settle down again soon.

We are in full on meltdown mode...

2010-10-25T16:07:00.002-05:00

Andy is having a major meltdown. It's been a while since I've seen one this bad.

He's been doing really well lately. Well, he had been. I even blogged a while back that we were in the "calm before the storm." Now the last few days have been a bit more difficult. He's been more mouthy at home, and has gotten in trouble at school a few days in a row.

And today, well, things have "hit the fan" so to speak.

You see, Andy has a problem with rushing through his homework to get it done, and in the process often makes silly mistakes. I mean, this kid can do math with his eyes closed, yet on his homework papers he almost always makes at least one mistake.

This has carried over to his work at school as well. He has recently "forgotten" to capitalize letters at the beginning of his sentences and "forgotten" to use punctuation.

Because of this, we have instituted a new homework policy. Andy is expected to review his homework before showing it to me to check for mistakes. Almost every day, I ask him if he double checked it, and he says always says yes, even though he didn't.

Today he said he had finished his homework...in less than 2 minutes no less. I asked him if he had reviewed it, and of course he said he had. Now, I knew before looking that he obviously didn't check it over. I told him, "You better make sure you checked it. If I find a careless mistake, you will lose your video game time for this evening."

Now, before you think I'm a crazed, perfectionist Mom, I'm not. I don't expect my son to never make mistakes, nor do I expect him to always have a perfect score. However, I do expect him to carefully complete his work and not make careless mistakes.

Andy looked at the paper and said, "Oh, well let me check it really fast" and spent about 5 seconds glancing at the paper before handing it back to me.

I said, "Are you sure you double checked it? Do you need to look again?"

He said yes he was sure and no he didn't need to look again.

I looked at the paper and he missed the very first question. Simple word problem, problems much like the ones he has been doing for the last two years.

So, no video games for him today. And, that's what pushed him over the edge. He cried, he whined, he begged.

I feel bad that he is so upset. Yet, I was clear with the expectations, I was clear about what the consequences would be, and I gave him TWO chances to double check his work.

However, I am confident that he will live through the night without his video games. And, I know that what I'm teaching him...that we must be careful in our work and double check for mistakes...is a valuable lesson that he will someday thank me for.

Even if he thinks I'm mean and terrible for the time being...

Check out Andy's Story...

2010-10-18T16:38:00.003-05:00

We were the feature story on another blog this week. Check it out:

http://www.hartleysboys.com/2010/10/16-bernatow-family.html

Enjoy! And remember, the fundraising is still taking place. Please consider making a donation to help educate and support other families dealing with SPD.

30 Stories in 30 Days

2010-10-02T13:22:00.004-05:00

Please take some time this month to read 30 SPD stories in 30 days on a great website:

http://www.hartleysboys.com/

I hope that you will be touched by the stories, and compelled to donate to The SPD Foundation to further research and education about this disorder. If you decide to make a donation, please do so in my family's name. To do this, put my name and email address in the comment section of your donation.

Look for my family's story on Saturday, October 16th!

Brotherly Love...or is it?

2010-09-24T12:31:00.002-05:00

Andy and Nate are best friends yet total enemies.

You parents know what I'm talking about. Either they are playing sweetly together or screaming at each other and wrestling each other to the ground.

Andy and Nate's sibling issues seem to be compounded by their SPD. Andy is auditory defensive, while Nate is auditory hyposensitive. Because of this, Nate talks non stop, very loudly, which drives Andy crazy. When it gets to be too much, Andy yells at Nate and then hits him. Obviously Nate doesn't like that, so he hits back. Nate is tougher physically than Andy. Nate hits harder, which Andy reacts to very sensitively, which almost always results in Andy crying.

Also, Andy hums when he's preoccupied and concentrating on something. This drives Nate crazy. So, when he's had enough, he yells at Andy. Since Andy has auditory sensitivity, he gets mad when Nate yells, so he yells back or hits him.

Does this sound like your house?

Andy is also easily overstimulated, and because of that, he prefers to spend time by himself in his room decompressing. Nate constantly goes in to bother him because Nate is the opposite...he's an extrovert who wants to be the center of attention. It seems like almost daily I have to tell Nate to get out of Andy's room, to only go in if he's invited, yada yada yada.

Sometimes parenting two children with SPD is exhausting and near impossible! You never know if it's going to be a "you're the best brother ever" kind of day or an "I hate you and get away from me" kind of day. Never a dull moment...

The calm before the storm...

2010-09-13T19:00:00.000-05:00

I haven't kept up with the blog lately because, well, I didn't have a whole lot to say. School started, and Andy was doing well in second grade. Nate started kindergarten and was thriving.

And, quite honestly, their SPD seemed to be pretty under control.

But, as any good SPD parent knows, times like that are usually the calm before the storm...

Apparently that was the case. Andy had a "not so good" day at school today. He got a "blue" day, which means he had to pull three cards. Yikes. Andy is my child who never gets in trouble except for the occasional blurting out an answer without raising his hand. A "blue" day is way out of character.

The note his teacher sent home listed the following as his infractions:

1. He blurted out an answer when it wasn't his turn.

2. He was "moving about" during instruction time.

3. He was talking during instruction time.

Do you see the problem with this? All of these are SPD related.

And, I can tell you what the trigger was. Today was picture day. Andy is very OCD about his schedule/routine, and anything out of the ordinary is a problem. Can it get more disruptive than picture day? There was a constant flow of children in the hallway walking to and from pictures, his normal routine was disrupted while his class went to get their pictures, and he was herded into a classroom full of bright lights/cameras where he had to stand in line surrounded by kids waiting for pictures...you get the idea.

I guess I'll have to go to school in the morning to speak with his teacher. I certainly don't want Andy to be a disruption in the classroom, nor do I want bad behavior excused. However, I feel like there maybe should have been some verbal reminders about his behavior instead of punishment. His behavior was well out of the ordinary for him, so I would think the teacher would try to get to the root of the problem.

This is the part of parenting that I don't enjoy. I wonder when the next calm will come...

Long time, no blogging...

2010-09-13T17:56:00.002-05:00

The nausea has subsided, the bleeding has *almost* stopped, and I am feeling human once again.

I hope to be more active again soon. I know I said that before, but that's right when the bleeding started...Apparently this baby in my belly doesn't understand that my plate is already pretty full dealing with two active SPD boys.

On a good note, things appear to be progressing well, things seem to have settled donw, and we found out that we are having a GIRL!!! We are very excited and feel really blessed to be adding her to our family.

Enough about me...more SPD stories coming soon.

Restriction Lifted...WooHoo!

2010-08-11T10:21:00.002-05:00

Nate's doctor was amazed by how well he was doing, and commented that he could hear Nate jumping around and talking nonstop from out in the hall. Hahaha. Live with the kid for a few days and see what it's like!

We are going to try to cram as much as we can into these last few days of summer. School starts next Thursday, and we want to have as much fun as possible before then.

First on our list, the waterpark. WooHoo!

We need to run, jump, dance, and play!

2010-08-08T16:52:00.003-05:00

Nate got his tonsils out on Friday. The surgery itself went well, and Nate has been amazing. He hasn't complained about the pain, he was eating food within an hour, and has been a real trooper.

The problem is that he's on an activity restriction for 2 weeks. No running, no jumping, nothing that can elevate his pulse or his blood pressure.

That's made for a tough week. First of all, Nate is a sensory seeker, so he's used to jumping on the couch, doing sommersaults, wrestling with his brother, running throughout the house, etc. He also LOVES to play outside which is off limits.

I can't tell you how many times I've had to say, "Don't run", or "Stop wrestling with your brother".

Needless to say, he's crazy out of sync since he can't get the crazy, bouncy, heavy activity that he's used to. We even had to miss OT.

Tomorrow is his follow up with the ENT doctor who did the surgery, and I'm going to beg and plead that he pretty please lift the activity restriction early.

I'm not sure I can keep this boy down much longer!

More feeding woes...

2010-08-03T17:31:00.002-05:00

Andy's eating is going through another bad phase right now. I can't say his eating has ever been good...well, not for the last 5 years at least, but it's been especially bad again lately.

We've had several episodes of him vomiting at the kitchen table which isn't exactly the way I want to spend dinner time. I mean, I am so nauseated from this pregnancy that I can barely eat as it is. To see someone sit next to me and vomit on their plate and/or the floor certainly does not help my appetite.

We saw a new "expert" today who is a counselor that deals exclusively with gifted children and their particular anxieties. It's my belief, as well as hers, that his eating issues began as a sensory issue, but have become much more than that. Now it's an anxiety provoking activity that causes him lots of stress.

Here's hoping that with some counseling and lots of work on decreasing his overall anxiety issues, I can once again serve a pork roast and mashed potatoes without anyone vomiting at the table.

Blackberry Picking

2010-07-22T08:41:00.003-05:00

As you know, I haven't been feeling the best, so weekends have been pretty lazy around our house.

Because of that, I decided it was time for us to go do something fun as a family. I planned a trip to a local "pick your own" farm to pick some blackberries. The last time we went to pick blackberries, Andy was 16 months old, and he loved it! He was eating them faster than we could pick them. By the time we left, he was stained from head to toe with blackberry juice.

With that memory in mind, we drove to the farm to have some fun. From the instant we got there, Andy was grumpy.

It was too hot. He didn't want to wait for the tractor to take us to the fields. He didn't want me to take his picture.

Nate, meanwhile, was thrilled as pie. He was so excited to ride on the tractor. He couldn't wait to pick blackberries.

We got out to the blackberry fields and there were beautiful, ripe blackberries everywhere. Nate, my husband, and I started picking the blackberries as fast as our hands would let us.

Andy didn't want to pick the blackberries. He didn't like the way the blackberries felt. He didn't like the way the juice squirted on his hands. He didn't want to taste the blackberries.

And, he didn't like the bees. Ok, so there were a few bees around. Usually they stayed out of sight, and it's not like they were killer bees waiting to attack. But, with Andy's supersonic hearing abilities that come from his SPD, he could HEAR the bees. That in and of itself was enough to scare the beejeebies out of him.

Oh, and it was too hot. Did I mention that?

The rest of us were laughing, we were eating blackberries, we were yelling, "Look how big this one is!" and "This is going to be a sweet one!"

Andy just stood there and sulked. So I called him grumpy. That went over well.

After a few more minutes of Andy acting miserable while the rest of us had the time of our lives, I said to him, "Andy, sometimes happiness is a choice. If you want to choose to be grumpy, that's fine, but we are happy and having a good time. We're not going to stop just because you're grumpy."

That didn't work either. He continued to be grumpy.

We picked blackberries until our hands and nails were stained with juice and our buckets were overflowing. Then, and only then, did we agree to be done.

Do I feel bad that Andy was so unhappy? Yes, and no.

I feel bad that he could hear the bees that we couldn't. I feel bad that he felt the heat more than we did. I feel bad that he didn't have fun.

But I don't feel bad that we allowed ourselves to have fun anyway.

Sometimes you have to choose to not let SPD rule your life. This was definitely one of those times.

Sorry it's been a while...

2010-07-20T09:56:00.002-05:00

I've been feeling under the weather. Don't worry, though. I'm not ill.

I'm just pregnant.

That's right...we have a baby on the way. It's an "unplanned miracle" that I wasn't quite ready for.

In fact, I had come to terms with the fact that there would be no more babies in my future. I had talked to my pediatrician, and my husband and I had discussed it for hours on end. We felt that with Andy's issues it might be better that we not have any more children.

Once we came to that decision, I cried, I grieved, and then I felt at peace. That was in April.

So imagine my surprise when I found out that God had a different plan for us! The shock has now worn off and we are ecstatic and very happy about this gift we have been given.

However, the nausea has been horrendous, and I've had a few other minor issues. It's been enough that I just haven't had the time or the energy to keep up with my blog. But, I'm hoping things will be a little more calm here in the next few months and I can jump back in the action.

So, that's what is new with us. I will try to update more regularly.

It's a really, really, good day...

2010-06-30T15:39:00.003-05:00

Andy's evaluation was today. First of all, I can't say enough about the Knights of Columbus Developmental Center. What a great group of really knowledgeable people. They whisked us right back, started the evaluation right on time, and answered all of my questions with clear, concise answers.

Best of all, they concluded that Andy does NOT have Asperger's Syndrome. And I believe them.

Yes, I know this is the same thing that the jerk of a neurologist said a few months ago. However, I didn't believe the neurologist when he said it because he had no explanation and had no answers to my questions. He formed his decision after talking to Andy for 5 minutes.

Today, two different professionals spent an hour and a half each with him. They explained that he didn't have the speech/language deficits that an Asperger's child would have. They explained that his IQ test didn't exhibit the variances that it would have in an Asperger's child.

They instead concluded that he is highly gifted, has severe anxiety, and sensory processing disorder. Luckily, none of those was a surprise.

They suggested that some of Andy's social awkwardness is due to his giftedness, and his inability to relate to his peers because of it. Makes sense to me.

So, that's where we stand. We are very excited to finally know FOR SURE that it isn't Asperger's. And now we know the reasons why.

He's just too darn smart for his own good. Plain and simple. And THAT I can handle.

Tomorrow's the big day...

2010-06-29T15:21:00.003-05:00

We have our appointment at the Developmental Center tomorrow. I can't wait.

That probably sounds weird since I will most likely get an Asperger's diagnosis for Andy, but it will be a relief to finally have some answers.

Sorry I've been neglecting my blog, but life has been, well, busy. I've got a lot to catch you up on, and hopefully will in the next few weeks.

Until then, keep us in your thoughts, and I'll try to update you all tomorrow evening on the results of our evaluation.

The best news I've had all week...

2010-06-16T12:52:00.003-05:00

I got the best phone call today when I was in a tiny dressing room trying on some clothes at Old Navy.

It was a lovely lady from the Devopmental Center that we are on the waiting list for. She was calling to schedule Andy's appointment for his evaluation for Asperger's Syndrome.

We now have his appointment scheduled. WooHoo!! We are scheduled for June 30th. No more waiting list.

NO.MORE.WAITING.

I'm beyond excited. Thrilled is more like it. I just can't wait to sit down before this panel of experts and finally get some answers.

Can you feel my excitement??????

Andy and his "hesitation"

2010-06-14T09:31:00.003-05:00

This morning Andy was swinging in our net swing like he does every morning. Sometimes we talk, sometimes he has a million questions, sometimes he's very quiet.

Today we talked a bit, then he got very quiet and closed his eyes. After a few minutes, I whispered, "Are you sleeping?"

"No, Mom, I'm just hesitating," he said.

"What?" I asked.

"I'm hesitating. If I close my eyes and relax I can feel the blood flow through my fingers. It feels cool," he said.

"What do you mean when you say hesitating?" I asked.

"You know...hesitating! Like when you cross your legs, put your hands in your lap and close your eyes," he replied.

Now I understood! "You mean MEDITATING?" I said.

"Oh, yeah. That's what I meant. I thought it was called hesitating. It's cool though because it makes me relax and I can feel my blood pumping through my body," he answered.

It's truly amazing the things that he can feel that I don't. Just like he smells things that I don't smell, and hears things that I don't hear.

I guess some things about SPD aren't quite so bad.

Andy tried a new food...

2010-06-02T10:02:00.004-05:00

Most of you SPD Mommies have been through the ever popular food battles that often occur with our SPD kiddos.

Andy has never been a good eater. Well, I take that back. He was a GREAT eater until around his second birthday. Then he stopped eating most everything.

His list of appropriate foods is limited. He does not try new things. If it doesn't look right/smell right/feel right, he isn't going to eat it.

On Monday, we went to a neighbor's house to swim. She said, "I put some toasted raviolis in the toaster oven for the kids."

I just politely smiled. No way was he going to eat that.

It's frustrating to deal with these food issues on a daily basis. We can't go anywhere without planning ahead. Will they have anything that he will eat? Do we need to bring something else for him? Do we need to replenish our stock of Uncrustables?

I'll admit most people probably think it's kind of weird for me to show up to a birthday party or other event and take out a pbj for my son while all the other kids are enjoying hot dogs. But that's just the way it is.

The worst part is the "looks" people who don't get it give me when I whip out whatever I brought for my SPD kiddo to eat. There are looks of shock, surprise, and disgust. I've been told more than once that I should just force him to eat, he will eat it if he's hungry enough, I'm enabling him by offering something different, etc. My favorites are the people (mostly in my family) who try to guilt him or trick him into trying something he doesn't want. Not a good idea.

Luckily my neighbor gets it. She also got out some grapes and cherries because she knew Andy liked grapes. Then when he complained because the grapes were touching the cherries, she hand picked all of the cherries out of the bowl for him. I wouldn't have even done that. LOL!

When they were done cooking, I put the toasted raviolis on a plate and put them in front of the boys. Andy picked one up, looked at it strangely, and asked me what the "black flecks on top of it was". I told him it was spices.

To my surprise, he picked it up, licked it, then he took a bite. Then he took another. About that time, after the second bite, he got to the meat that was inside. He grimaced, shuddered, and put it down.

"There's something in it, Mom!" he said.

I said, "I know. It's meat."

He hates meat. There are only a few types of meat he will eat. I thought for sure this was the end of the toasted ravioli.

He stared at it for a minute, and I could tell he was deep in thought.

Then he picked the ravioli back up, said, "I like it anyway" and finished it off.

I was shocked. Granted, he didn't eat any more of them, but for him to try something new like that was amazing!

I'm not sure he will eat them again, but I'm so, so proud of him for at least trying them.

Oh, and I almost forgot...

2010-05-29T09:21:00.002-05:00

We have officially been accepted into the Autism Clinic I mentioned in a previous post. They have reviewed the paperwork that I filled out, as well as the paperwork from Andy's pediatrician, and they believe Andy does warrant a full evaluation for Asperger's Syndrome.

We are now officially on the waiting list for an eval. It will be up to 6 months before we actually get screened, but I'm so excited and hopeful.

Thank you everyone for you kind words and support over the last few months.

This is great news and I wanted to share!

It's been another rough week...

2010-05-29T09:11:00.002-05:00

This week was Andy's last week as a first grader. We got home from vacation on Sunday, and he had missed a full week of school. Because of that, Monday he was nervous and excited to go back.

When I picked him up after school on Monday, I could tell he had been crying. He said that a half hour before the end of the day he got upset that school was ending and started to cry. His teacher asked him what was wrong so he wrote her a note saying he was sad that school was ending.

That evening, he cried on and off throughout the evening about it. He would be fine, then the tears would start again.

I don't think it's about school so much, as it is the change. He's never done well with changes to schedule or his routine. I think the end of a school year is pretty anxiety inducing for him. I mean, he will go to summer school, but it will be a new teacher, different kids, everything about it will be different.

The rest of the week was the same...he would get emotional at different times about the end of the year. It was frustrating and saddening at the same time. I felt so bad for him, but when we were at the grocery store and he all of a sudden started crying about it again, I wanted to say, "Seriously? Give it up already!"

I would never do that, of course, but sometimes this is just exhausting. It's hard to always appear sympathetic when he cries for a week. It's hard to give so much to another human being. It's emotionally draining.

But, it's what we do because we are mothers, fathers, or siblings of someone with special needs. We do it because we love them.

Here's hoping that the transition to summer school is less painful...

Sleeping while away...

2010-05-25T11:07:00.003-05:00

I was nervous about taking Andy on vacation. I was nervous about the normal things...the lines we would wait in and the inevitable crowds.

But most of all, I was nervous about the 4 of us sleeping in a hotel room together. Andy has always slept in his own room. He's never been one to come into our room, or sleep in our bed. I had no idea how he would do sleeping with all of us in the same room, much less sleeping in bed with his brother.

Maybe it was because we were so exhausted each day, but he slept well. So well, in fact, that he took a nap for the first time in years! It was magical!

We just returned from the most Magical place on Earth...

2010-05-24T19:17:00.002-05:00

We spent 7 days in Walt Disney World, and it certainly was magical.

I was worried about how Andy would do...crowds, lots of waiting in lines, overstimulation, the heat.

However, he did wonderfully. Instead of acting out when he was overwhelmed, he became very quiet and retreated into himself. He would zone out and tune everything out.

He was very loving during the trip, very complimentary, and seemed to really, truly, enjoy himself.

It really was a magical trip. I'll update in a few more days once I've caught up with life.

Ready, and Waiting...

2010-05-16T10:21:00.002-05:00

I've filled out the paperwork. I've talked to the doctor at the clinic.

The papers were given to the pediatrician for her portion to be completed.

Now we wait.

We will be getting called with our appointment information soon. It will be a few months before we actually get in, but I am excited and hopeful.

The clinic sounds amazing. I spoke to one of the doctors at the clinic, and the evaluation process sounds thorough. It sounds much better than the neurologist who, after only 20 minutes, insisted my son does not have Asperger's.

I will keep you posted. Once we have an appointment, I will yell it from the mountain tops. I'm so excited to have the chance for Andy to be evaluated by this great clinic.

But most of all, I'm ready to finally have a definitive answer one way or the other.

In the meantime, we wait.

Andy's school finally made a decision about summer school. With the recent budget issues, they thought they weren't going to be able to offer it. But, at the last minute, they came through. It will be only 3 weeks, and half days, but I'm grateful. Andy going a whole summer without school would equal a nightmare in the fall.

They've selected his teacher for next year, and I hear she's phenomenal. She's been teaching for years, and seems to be warm and fuzzy, which he needs. She's won teaching awards, and I've heard a lot of wonderful things about her.

Hopefully our evaluation will be completed before the start of the next school year so we can get an IEP in place before the first day.

That's it for us. We are excited and, ready and waiting!

Today I am Thankful...

2010-05-09T18:37:00.003-05:00

I know I've had a lot of poor me moments in the last few months. I have had a lot of bad days, a lot of stressful appointments and meetings...

But, today I am thankful. Thankful that I brought Andy to life 7 years ago.

Thankful that I have experienced the sleepless nights, the illnesses, the meltdowns, the appointments, and the 504 meetings...

Lots of people are never blessed with children. Lots of people yearn to be parents but never get to be.

So, I will endure the stress, and the tears, and the pain, and I will be thankful.

Thank you, Tom, for loving me and helping me become a Mom. Thank you for being a terrific Dad and playing board games for hours with the boys.

Thank you, Andy, for being my first born...for teaching me what true love really is. Thank you for making me realize how much I can possibly love another human being through the good and the bad. Thanks for rubbing my back when you stand next to me. Thank you for your brilliant mind and for keeping me on my toes. Always.

Thank you, Nate, for being my second born. Thank you for teaching me that I can love another child just as much as the first. Thank you for your sweet face, and your stubborn personality. Thank you for your "lovins" that you give me whenever I ask. And thanks for making me laugh. Every single day.

I have a lot to be thankful for, and even more so on this day. I'm so grateful to be a Mom, especially to such wonderful, loving little boys.

Now go and tell all of the important women in your life how much you love them.

A Guest Post from Hartley Steiner

2010-05-07T10:01:00.003-05:00

I want to welcome Hartley Steiner to my blog today. I've been following Hartley's blog for some time, and I am sure you will enjoy her guest post today. It's a subtle reminder about why we, as special needs parents, must remember to take time for ourselves. Enjoy, and Happy Mother's Day to all!

“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.

The light bulb went on when I stepped on the scale last spring – and well – let’s just say that instead of displaying a number, it actually said, “One at a time, please.” That was the first sign that I had stopped making time for myself.

The other signs were equally as disturbing; I was eating horribly (what my kids left behind, or fast food drive thru), wasn’t getting any exercise (chasing Matt should make me thin, but no such luck), hadn’t been to the doctor in years, never mind the dentist, and was down to having my hair cut 2 times a year at best, no matter how awful it looked. I would NEVER accept those things for my kids, so why was it OK for me?

I realized then that respite time had more to do with how I was treating myself – that taking the 20 minute shower was symbolic of self value and, more importantly, a stepping stone on the way to Australia. (OK, so I didn’t actually know the whole Australia thing then, but I knew it was a stepping stone towards something.)

I made a commitment to treat myself better. To treat myself, my health, my body, my mind, all of my needs, as if they were as important as my son’s needs.

The irony is that because we have special kids, we somehow have convinced ourselves that taking care of our own personal needs is a luxury. It’s not a luxury. A Mercedes Benz is a luxury. A Rolex is a luxury. 1000 thread count sheets is a luxury. Taking a shower, spending time with our spouse, or even going out with our friends is not my definition of a ‘luxury’.

The well kept secret here is that we can choose to take care of ourselves AND our kids.

I started my new self-care campaign by committing to getting myself a shower, if not every day, hopefully every other day. Do you think that was easy? NOT EVEN CLOSE.

My choices were to either, a) awake before my kids like my husband does by getting up and into the shower before 6am or b) find a way to distract my youngest son Matthew while the older boys were at school, and jump in then.

Now, I am not a morning person and I don’t drink coffee because I can’t stand hot beverages, so that ruled out option ‘a’ pretty quickly (I may just be the only SAHM on the planet that doesn’t sip a latte every morning, but thus far, Starbucks hasn’t seen a dime of my money).

This left me choosing option ‘b’, which requires a great deal more creativity and even a tinge of daring on my part. Matthew, as much as I love that small child, is a mess waiting to happen. Which means, no matter how well laid my plans are, no matter what awesome ‘new’ show I have recorded, no matter how many bribes he has in front of him, he will be NO WHERE near the spot I left him when I get done with my shower.

But, I am willing to take that risk.

And when I get out of the shower, wrap a towel around my head, and run through the house in my underwear surveying the damage he did in mere minutes, I remind myself that it was worth it. Because I am worth it.

But showering was only part of the plan.

After I had showering under my belt, I began to feel better about myself – dare I say even less stressed, and that feeling was addictive.

Soon I turned my new self-care addiction into going out for dinner with my girlfriends, attending more support group meetings, the occasional trip to the gym, going to the doctor, getting my hair cut, replacing 10-year old clothes with new ones, and going on dates with my husband. I even painted my own nails at night when the boys were asleep.

It was a change of attitude really: A change of perception about me, and about my life. It wasn’t (and isn’t) about just being away from my children, or doing frivolous things, but rather about allowing myself to see me as more than just a SAHM or a Special Needs Parent. Those are only part of who I am.

Taking time to out to take care of my needs allowed me to remember that I am a whole person, not just one label or another.

I spend a great deal of time talking about my family on my blog and in my real life, because I love them and they are truly the focus of my life every day.

But they aren’t the sum of who I am. I am much more. I love to laugh, can bake amazing desserts (cheesecake and lemon pound cake are my favorites), still listen to rap music, enjoy photography and have been infatuated with the ocean since I was 9 years old and decided to become a Marine Biologist, despite getting decompression sickness while SCUBA diving and going through hyperbaric treatment in Hawaii when I was 14. I bet you didn’t know those things about me, right? Truthfully, I’d begun to forget about them myself.

The bottom line here is this: It is OK that I want to go to Australia.

Two years ago, there is no way I would’ve been able to admit that and honor that I needed time for myself and that it would be OK to leave the kids for a week (Although I have yet to master the logistics involved in leaving them for an extended period of time). I know now, that taking time for myself and for my marriage will make me a better person, wife and mother.

And I have proof of it in my daily life – in the way I am able to be with my kids, and honor their challenges. In the way I am able to see my husband and support his dreams. And in the 20lbs I’ve lost without so much as being on a ‘diet’ this last year. Turns out taking care of your own needs is a good idea – and it is never too late to start.

Now, I know all of you are not going to read this and run off to Australia – but my hope is that you do run off to the shower, because as you now know, all showers lead to Australia.

-- Hartley Steiner, Australia bound mom, special needs advocate, blogger at www.hartleysboys.com and author of This is Gabriel Making Sense of School.

The Good and the Bad...

2010-05-04T14:47:00.003-05:00

So....the new place I've been referred to is a Developmental Center at a local leading Children's Hospital that specialies in diagnosing Autism and Asperger's Syndrome. That's good.

However, their waiting list is 6+ months long. That's not so good.

Sigh.

So, that didn't go well...

2010-05-04T09:17:00.002-05:00

We had our visit with the neurologist yesterday, and to say it didn't go well is an understatement.

I was hesitant to go back to the guy, because when we saw him 2 years ago he didn't seem to listen, and was quite frankly a bit of a jerk. However, my pediatrician really wanted me to go back to see him again because she thought he would be able to see Andy today vs. 2 years ago. She really thought he would get an Asperger's diagnosis.

My first clue that it wasn't going to go well should have been when the doctor got his reflex hammer out, and without warning my SPD kiddo, whacked him on the leg with it. Andy immediately said, "OWWWWW!!!!! What are you doing? That hurts!!!!!" The doctor continued to check his reflexes without explaining himself, and then rolled his eyes at me really dramatically while Andy complained about it hurting.

After 5 minutes, the neuro said it wasn't Asperger's. He said it was ADHD (again). I had letters from Andy's teachers saying they didn't see any ADHD, I had filled out an ADHD questionaire, but he ignored those. He said it's definitely ADHD and he wanted to immediately start Andy on Strattera.

I said no way, absolutely not. I told him I don't see it. He said, "You see it. You just pretend not to."

Seriously? Where are the cameras? Am I being Punked? Am I on Candid Camera?

Then he said again that SPD isn't "real".

I immediately said, "Woah, wait a minute. Just because it isn't in the DSM doesn't mean it isn't real. It's a finalist to make it in the next edition."

He said, "Well, that's debatable. We'll see."

OMG. Is this guy serious?

I said, "There was a time when Autism wasn't in the DSM, does that mean IT wasn't real?"

To which he said, "You know what they are taking out of the DSM? That's right...Asperger's."

So I came back with, "Um, it isn't getting taken out...it's getting moved under the umbrella of autism."

What a jerk! He obviously has never had anyone question him before, much less someone who knows what she's talking about. He got really defensive, really quickly.

It went downhill from there.

I asked him, if it isn't Asperger's, how does he explain the lack of eye contact. He said that Andy is just self absorbed. I asked why Andy replies off topic in conversation, and he said it's because he has ADHD and isn't paying attention to the conversation.

I asked him why Andy has such severe sensory issues, and he said that there's no such thing. It's just anxiety.

He said the meltdowns are because Andy has an inflated sense of selfworth and wants everything to revolve around him, and when it doesn't, he has a fit.

Wow. Seriously? So, let me get this straight...

According to this doctor, my son is a spoiled, self absorbed, manipulative brat? Does that sum it up nicely?

Needless to say, I thanked the doctor for his time, told him I would not be coming back to see him, and left.

I immediately called my pediatrician and talked to her for a long time on the phone. She was really discouraged because, like me, she thinks Andy warrants an Asperger's Diagnosis. She recommended a second opinion.

Now we are waiting to get an appointment with another neurologist here in our area who specializes in Autism and Autism Spectrum disorders. I'll keep you posted.

Cat Got Your Tongue?

2010-04-29T09:22:00.002-05:00

Andy has been unusually quiet lately. Withdrawn almost.

Yesterday I picked him up from school and he was, well, quiet. I asked him what was wrong, and he said nothing.

But, he wasn't talking about his day, was answering questions with one word answers, just being very quiet.

I said, "Sweetie, you've been really quiet lately. Is anything going on?"

He thought about it for a minute, and replied, "Sometimes I'm quiet because I'm sad. But usually I'm quiet because I just don't have anything to say."

Well said.

One of the cool things about having a gifted child...

2010-04-23T09:00:00.002-05:00

You never know what's going to come out of Andy's mouth, and it's often funny to hear the very insightful things coming out of such a young man. This boy is brilliant. Almost too smart for his own good.

Yesterday, he was playing his Nintendo DS. He only gets to play video games for 30 minutes a day, so he cherishes each and every minute. Nate wanted to multi-play with him, but Andy politely declined. Nate asked again. And again, and again, to the point of whining/begging. Andy was not giving in.

Nate finally said, "You are being soooo mean!"

To which Andy calmly replied, "No, Nate. I'm not being mean. I'm just being self-serving. Do you know what self-serving means?"

OMG! I almost fell out of my chair. I was trying so hard not to laugh, but hearing him try to explain to a five year old what self-serving meant was just plain hysterical!

And since when does someone actually admit to being "self-serving"? Hahaha. I'm used to grownups who are but pretend not to be. And here my innocent seven year old is proud of it.

Man, never a dull moment! I love it!

Our appointment is scheduled...

2010-04-22T15:21:00.002-05:00

Andy's re-evaluation with the neurologist is scheduled for Monday, May 3rd. While I'm nervous, I'm glad to hopefully finally get the answers we've been looking for. Please keep us in your thoughts that day, and pray that we get the answers we need.

Does he, or doesn't he???

2010-04-20T10:32:00.004-05:00

Two years ago I took Andy to a neurologist. I had concerns about him...knew something wasn't "right". I feared he may have Asperger Syndrome. I had been told by a few clinicians that I should have him evaluated because they had the same concerns.

In the matter of 5 seconds, the neurologist told me no way. He said my child instead had ADHD and Oppositional Defiant Disorder. Now, those of you who know Andy know there is no way in hell that he has Oppositional Defiant Disorder. He is the sweetest kid, doesn't cause trouble, doesn't get in trouble in school. In addition, Andy displays no ADHD characteristics other than the fact that he's wiggly, which I know is from his SPD. I tried explaining this to the neurologist but he wouldn't listen. I think he thought I was one of "those" moms who was looking for something to label my kid with.

The neurologist also went so far as to tell me that SPD is not real, it's a manufactured diagnosis that holds no weight. I wanted to punch him in the face right then and there. Anyone with an SPD kiddo knows that isn't the case. Anyone who has watched a wiggly kid get into a net swing and calm down in about 2 minutes knows it's real.

We left that appointment with me feeling angry. Angry that the neurologist so quickly dismissed my concerns, angry that he didn't listen, angry that he so misunderstood Andy and I that he thought my child deserved the ODD label.

Fast forward 2 years and here we are again. Andy's SPD symptoms are getting worse, he's been very out of sync the last few weeks. His emotions are off the charts, the meltdowns are more frequent.

Andy had his seven year check up at his pediatrician's office yesterday, and she told me she wants me to have him reevaluated by the neurologist. She thinks he may qualify for the Asperger diagnosis at this point.

Now I'm angry. I'm upset. I'm scared. I went from being told he probably had it by a therapist 2 years ago, doing research and convincing myself that it was probably true, to being told he didn't by the neurologist. Now for 2 years I've been telling people he's as close as he could be to the spectrum without actually being on it. Then I'm told he probably does have it and I should have him reevaluated.

I'm afraid that if he is diagnosed at this point, we've lost 2 years that we could have been working on it. Would it have made a difference? I don't know. He's been receiving treatment for his SPD the whole time...he's been in OT. But would he be in a different place now if he had received the correct diagnosis 2 years ago?

So, which is it? Does he, or doesn't he? I just want to know one way or the other so we can move on.

Happy Birthday, Sweet Boy!

2010-04-17T08:05:00.002-05:00

My "little" Nathan is 5 today. Not so little anymore, but my baby nonetheless.

He is energetic, stubborn, smart, thoughtful, sweet, totally adorable, and definitely "out of sync".

But,I love every single inch of him.

Happy Birthday, sweet boy!

How's it been in YOUR house?

2010-04-16T12:31:00.002-05:00

This last week has been worse than the one before. I didn't even realize that was possible, but it apparently is.

Andy has been extremely emotional, crying several times a day about anything and everything. He's been zoning out, retreating into his mind. He's been impulsive, aggressive, and negative.

I have had the hardest time pinpointing the cause. The only thing that is different is the weather. It's been warm...in the upper 80s for the last few weeks. We went from low 60s to upper 80s almost overnight.

Maybe he's getting too much outside play at school...

Maybe he's got spring fever...

Maybe he's nervous about the upcoming summer...

Maybe it's allergies...

I really have no idea. I just know it's getting worse as each day goes by. He's uncomfortable in his own skin, constantly fidgeting with his clothes. He's getting in trouble at school. His vocal stimming has gotten worse.

I hope he can get back in sync soon. I feel bad watching him be so uncomfortable in his world.

So, how's it been in your house the past few weeks? Anyone else having a hard time?

So, what do you think? Is it hereditary?

2010-04-10T16:11:00.002-05:00

Do you think SPD is hereditary? Do you have others in your family that you suspect may have SPD or other sensory issues?

I'm curious to see what you guys think. Having 2 boys that both have SPD makes me think that it is hereditary, and they certainly get it from my husband. (I love you, Tom, but you know I'm right on this one!)

Research indicates that it is most likely hereditary, but of course they don't know enough about it yet to really know for sure.

So, you tell me...where did it first turn up in your family?

This Momma Bear is on the war path...Better watch out!

2010-04-07T19:28:00.002-05:00

I know all mothers have "Momma Bear" moments...those moments when our protective instincts are heightened and we just want to battle to our death to protect our little cubs. I am in full blown Momma Bear mode, and let me tell you why.

I picked Nate up from daycare today. He goes two days a week for 5 hours. His daycare provider has been in business for 30+ years, is licensed, etc. Nate has gone to her for 2 years now.

Nate was really quiet when I picked him up today. I asked him what was going on, and he said he was sad because his daycare provider wouldn't let him have his blankie during his nap.

Now, both of my boys have EXTREME attachment to their blankets. Attachments to blankets, stuffed animals, etc, is very common in SPD kiddos.

Nate literally has to take his blanket in the car everywhere. We don't leave the house without it. Even for 5 minutes. He has to know that it's there just in case. He takes it into school inside his backpack. He never gets it out, he never uses it at school, but he knows it's there. He's taken it to daycare every time to use during naps and it's never been an issue.

Nate "smells" his blanket. He holds it with his hands right up by his mouth and under his nose. He does it while watching tv, when he sleeps, when riding in the car, etc. It's his comfort item, his security blanket.

He's been even more attached to it the last few months. I'm sure it's related to his emerging SPD issues. Sometimes when we are about to get out of the car he reaches back, grabs his blanket, gives it one last "smell" and then he's good to go.

I don't care if he still uses a blanket. I don't care if he needs to take his blanket with him in the car everywhere we go. I don't care if we have to pack it in a backpack to take into the movies with us.

So, why in the hell did she refuse to let him use it today? He said she told him he couldn't have it during his nap today because big kids don't use blankets.

"She lied, though, Mom. Because I'm a big kid and I use a blankie," he said.

"Yes, sweetie. You are a big kid. And big kids CAN have blankets," I said.

I wanted to call her right then and there and read her the riot act. Who cares if he uses his blanket? Why choose today for it to suddenly be an issue?

Nate said he refused to lay on his cot because she wouldn't let him have his blankie. He said that she then yelled at him and told him he had to lay down. He said he didn't want to lay down without his blankie, but he finally did.

"I was really sad without my blankie, Mom," he said.

This Momma Bear is SERIOUSLY angry. There will be several discussions over the next few days with the daycare provider. Nate will most definitely be allowed to have his blankie next week when he goes.

Otherwise this Momma Bear's claws will be coming out.

So the week didn't get better...

2010-04-06T17:42:00.002-05:00

After my last post, I hoped the week would get better. It didn't.

I shouldn't have expected it to. The boys had Good Friday off, then there was Easter Sunday, and you all know what holidays do to our SPD kids. Then they had Easter Monday off.

Now here we are on Tuesday, and the kids are a wreck. Andy is crying over everything, Nate is throwing fits left and right. Lots of tantrums, yelling, talking back, etc.

I'm really hoping they will regulate by the end of the week. I hope they get back to "our" normal really soon.

Having 2 SPD Kiddos in the House...

2010-04-01T16:52:00.002-05:00

I may just have to rip my hair out.

It has been a rough few days for Nate SPD-wise. Luckily, Andy has had a few good days. I can handle it, I think, if they keep up the alternate day thing...

However, today, it seems to be a bad day for both. Lots of tears, lots of sensory seeking that involves hitting/banging into each other, which then leads to more tears.

My auditory hypersensitive son doesn't want to hear his auditory hyposensitive brother talk incessantly, so there's lots of yelling, then more tears.

Then there's my favorite, "he's not being nice to me" "no, HE'S not being nice to ME".

I may just run away.

Ok, so I can't run away, but a girl can dream, right? Is it almost bedtime?

Three things I learned today...

2010-03-31T20:03:00.002-05:00

1. Letting Nate play outside as much as he wants is not always a good choice. It may be good for his sensory diet, but makes for an overtired, overstimulated, exhausted and crabby child, which leads to a total meltdown at bedtime.

2. Sitting in rush hour traffic for an hour on the way home from Andy's Occupational Therapy session sucks.

3. I love 8:00. That's when both boys are in bed and I get to hear that strange sound that I don't get to hear often enough...silence.

Just another reason I hate birthday parties...

2010-03-29T20:28:00.003-05:00

Andy got invited to another birthday party today. Don't get me wrong...I'm thrilled that he got invited. I'm just not thrilled at the thought of another stressful party.

You see, as I've blogged before, birthday parties aren't always fun for him. Even more than that, the unpredictability of how he will react is the hard part.

We had a party just last weekend for the son of some dear friends of ours. Andy is buddies with the little guy, and it was just our small group of friends that was invited, so Andy knew everyone who was going to be there. No strangers.

About 3 hours before the party Andy suddenly said he didn't want to go to the party. He said it would be "too hard, too crowded, too loud, and too busy" for him. It broke my heart.

It was fine that he didn't want to go. I would never force him. However, I was afraid that he would regret not going if that's what he chose. I told him I would let him think about it and he could wait to make his decision until right before the party.

He asked me to call my friend to confirm how many people would be there. He would only go if there were going to be less than 10 kids, he said. I called, and she said 13. That made his decision that much harder.

I kept going into his room periodically in the hours before the party to see how his decision making was going. He would say he was going to stay home...no he was going to go to the party...no he was going to stay home. He kept crying and crying about how he didn't know what the right decision was.

Finally, it was almost time to leave. I went back in to check with him and he cried, "I just don't know what decision to make, Mom!"

It killed me. I mean, why can't the kid just go to a party and enjoy himself? Why does his little life have to be this damn hard? I would have done anything to take that pain away from him in that moment.

Instead, I just hugged him and told him that whatever decision he made would be the right one, and I'd be right there with him if he decided to go.

He wiped his tears, and decided to go to the party.

Now I don't know what to do about the invite to the latest party. It's for a classmate. He said he wants to go, but who knows how many times he will change his mind between now and then.

I really hope that one day these decisions that should be simple will be...the day that I can RSVP to a party and know he will go and have fun...the day that he can just be a kid and not have stress about something that should be fun.

It's official...

2010-03-25T21:09:00.002-05:00

I'm now the mom of TWO boys with SPD. Nate had his OT eval this morning and they confirmed my suspicions.

He is now scheduled for weekly OT visits.

I felt plain sick on the way to the appointment, even though I knew what the results would be.

Now I'm just glad it's over. Now it's time to attack it.

Another OT eval...

2010-03-23T20:52:00.002-05:00

Nate (my four year old who has recently started exhibiting sensory concerns) is scheduled for his OT eval on Thursday morning. I'm dreading it. I already know what the result will be, but somehow seeing it written on paper will make it more real.

Please keep us in your thoughts this week. I'll update you after our appointment.

Do you other SPD parents feel like this?

2010-03-23T10:27:00.002-05:00

I have been feeling lost lately. I feel like I'm just floating along in a fog. I feel like I'm merely existing.

I don't know if I'm just exhausted or if I'm just overwhelmed. I'm not sad, or depressed. I'm just plain tired.

I feel like I've withdrawn from friends. That wasn't necessarily purposeful. It's just hard to vent to someone who doesn't get it about my son's weird sock issues. I'm tired of hearing people say, "all kids do that" or "I'm sure it's just a phase." I know it isn't just a phase, and I know all kids don't do that. I don't want someone to tell me it's ok when it's not. I just want them to listen and try to understand.

Then the people who do "get it" already have their own issues to deal with so I feel like my issues are inconsequential. They have their own sock issues so they don't need to hear about mine.

That in turn contributes to the isolation that comes with SPD.

Maybe it's because of that that I feel like I'm just surfing along, waiting for the next meltdown. Maybe that's why I'm just plain tired. Maybe that's why I can't seem to keep things straight in my head.

I'm usually so organized. I'm usually on top of things. I've never been a procrastinator. However, in the last several months I've noticed I can't keep things straight. I forget about appointments until the last minute. I schedule things on days I already have other plans. I overbook myself one week and then have nothing planned the next.

I'm hoping things will regulate soon, that I will begin to feel more like myself again.

I miss me.

This is the Weirdness that is SPD...

2010-03-22T20:40:00.002-05:00

Andy went to bed 30 minutes ago. 8:00 on the dot...like every other day.

Out of the blue, nearly 30 minutes later, he comes out of his room sniffling and fake crying. He says he's really sad.

Me: Why are you sad, buddy?
Andy: You know that Panda game that Nate has?
Me: What?
Andy: You know...that Panda DS game that I played a few times right after Christmas?
Me: Um, yeah.

He hadn't played the game for months...where is this going?

Andy: I'm trying to go to sleep but I keep thinking about my Pandas and how I haven't fed them or given them anything to drink or played with them for a really long time. I wonder if they are ok. I don't think they are and I'm worried about them.
Me: Well, maybe you can play the game tomorrow after school during your video game time.
Andy: Well, I'm really worried about them and was hoping maybe you could feed them when I'm at school.
Me: That's fine, sweetie. Remind me before you go to school.
Andy: Thanks, Mom. That makes me feel much better. Goodnight.

Really? Where did that even come from? He played the game maybe twice when they got it for Christmas, and he hasn't touched it since.

What made him think of that right now? And why was he so concerned about it that he couldn't sleep and/or do anything else until he talked to me about it?

This is our SPD life...completely unexpected, every day is different, definitely a journey.

I'm in denial...

2010-03-19T20:38:00.002-05:00

Well, I'm not REALLY in denial. I'm just ignoring the issue. Not forever. Just for right now.

I often feel like I'm just so overextended, so overwhelmed, so exhausted with Andy's SPD issues that I can't handle even one more thing.

However, over the last several months, I've noticed Nate exhibiting more and more sensory issues. I literally want to cry even blogging about it, as if writing it down will make it more true. I know what it is. I know what it means. I just don't know how I can possibly handle it.

It started with his socks. One day this fall, while doing laundry, I discovered almost everyone in the house was wearing socks with holes in them. We went to buy new socks for everyone. Prior to this, Nate was wearing regular ankle socks that come to just above his shoe. I bought him some more of the same, but this time they were in a boys' size instead of a toddler size because, well, he's a boy now. Not a toddler.

The first time he put them on he complained that he couldn't "pull them up" far enough. He reached down and in an exaggerated fashion tugged on them as if they would reach his knees. I didn't think much of it at that time.

Over the next several days his complaining became more consistent. He started wearing his brother's socks that were much too large for him, so he could pull them up high above his ankle. After a week of complaining, I drove back to the store and bought crew socks that come up to his calf.

I've never seen anyone so excited about socks. He said, "This is EXACTLY what I needed, Mommy!"

Uh, oh. No!!! He can't have tactile issues. NO, NO, NO!!!!!!

Now that the socks were comfortable, things calmed for a bit. Then I started noticing that he was somehow wearing all 10 pairs of socks in just a few days time. I didn't understand how that was happening, so I asked him.

"Mom, I have to change my socks every time I take off my shoes because my shoes make them stinky" he said.

NO, NO, NO!!!!! This isn't really happening, is it?

I started watching him, and sure enough, as soon as we would walk in the door, his shoes and socks would come off and the socks went straight in the dirty clothes. Then he would get out a new pair. If he went outside to jump on the trampoline, he would put a pair on to go jump, then take that pair off when he came inside, and then put on a new pair again.

I eventually went to the store and bought another 10 pairs of socks.

Then I noticed issues with his pants. He started constantly pulling his pants up until the waistband was as high as he could get it...giving himself a wedgie of sorts with his pants. I have no idea how it can possibly be comfortable, but it is the only way he will wear them. All day long, he constantly pulls his pants up to his nipples like an old man.

Next were the complaints about his underwear. He put on a pair that he hadn't worn in a while, and immediately complained about the "lines". Yep...the seams on the legs were too "thick" and bothering him. He immediately went to change them.

Just to add insult to injury, as if there wasn't enough "evidence", the tantrums started. The long, drawn out, nothing can make it better meltdowns about anything and everything.

It's reached the point that I can't keep pretending everything is fine with him. I can't keep telling myself that he isn't as bad as Andy so I don't need to act on it. I'm GLAD he isn't as severe as Andy, but even so, it's starting to effect his daily life. It's time for me to acknowledge that it is what it is.

I just don't know how I can handle it. I mean, I will. I'm his Mom, I will attack this the same way I did with Andy. That's what Moms do.

I just don't know how.

Dear Useless Worker at the Eyecare Place,

2010-03-16T16:24:00.002-05:00

You suck. Plain and simple.

First of all, you broke Andy's eyeglass frames when we came to see you last week. Then you tried to cover for it by saying the frames were already cracked. Um, no they weren't.

You said you would order new frames and "put a rush on it."

However, after a week, I finally called the eye care place and discovered that you never even placed the order.

Luckily, your co-worker Elena is amazing. She gets the fact that you screwed up big time. She tried to correct your mistake. She told us to come in and she would put the lenses in frames she had in stock.

Unfortunately, when we got there, Andy's replacement frame choices were light blue or green...not royal blue. He doesn't want light blue or green. He wants royal blue ones like the ones he had before you broke them. And, he doesn't want to order them, he wants them RIGHT NOW.

Just so you know, my son cried when he saw his choices. He cried a lot. He cried and cried and cried right there in the lobby of your office while poor Elena stood there trying to decide what to do. Andy finally selected the light blue ones to use just until Elena could order in the royal blue ones.

But then his lenses didn't fit the light blue ones. So Andy cried some more while Elena tried to explain to us that she would order a complete new pair of glasses...new frames AND new lenses.

Too bad my seven year old SPD kiddo doesn't understand why you didn't do your job in the first place. He doesn't understand why you didn't order the frames last week. He doesn't understand why he can't have his old glasses back RIGHT THIS MINUTE.

So for that, you completely, and totally suck. You're lucky you weren't at work today.

Sincerely,

Brandi

The Verdict Was...

2010-03-14T09:34:00.002-05:00

We opened presents at the party. I left it up to Andy to make the decision. He elected to open the presents. So we did.

The day was not without drama, though. The morning was incredibly hectic, because Nate had a basketball game that started an hour before the party started. Because of that, I had to run around like a mad woman early in the morning picking up the cakes and last minute party supplies. It didn't help that the cakes were at two different places. I had the Red Dye 40 free cake to pick up at a bakery, and then I had to pick up Nate's chocolate cake at another store.

In the rush to Nate's basketball game, I realized I didn't get any balloons for the party. I called my Mom and asked her if she thought I needed any. I didn't think I did, but I needed someone else to tell me it was ok to do without balloons. Of course she told me it was fine to do without balloons. I hung up the phone and heard sobs coming from the backseat.

One quick look in the rearview mirror confirmed my suspicions...Andy was melting down because he DID want balloons at his party. We couldn't have a party without balloons. He needed balloons RIGHT NOW.

This was all my fault. First of all, I'm the one who forgot to get any balloons. Secondly, if I hadn't mentioned it, Andy probably wouldn't have even noticed.

This all happened about 2 minutes before we had to be at Nate's basketball game. I quickly called my brother in law and asked if he and my sister would run somewhere to get some balloons. Of course they agreed.

We went to the game, cut out of there early, and made it to the skating rink just in time to set up for the party. As we were getting out of the car, my amazing sister and brother in law pulled up with their car FULL of balloons.

Thank you, Missy and Chris, for saving the day!

Today marks the beginning of another year...

2010-03-12T15:53:00.002-06:00

My dear sweet Andy is 7 today. My, oh my, have the years flown by.

I can remember that first day he was born. I couldn't believe how wide awake he was and wondered why he wouldn't sleep. That should have been my first clue that it was going to be a rough and trying time.

Then the reflux and chronic ear infections started.

That first year was exhausting. I can remember sitting up at night with him lying on my chest just begging God to let him sleep...for even 15 minutes.

Then things settled down and things got better. He was such a sweet, smart boy. Then the food issues started. And then things got worse again.

Man, it's been a long seven years. But I am grateful for every second. I can't imagine my life without him. I'm thankful for the lessons he has taught me.

I've learned that it's possible to love someone so much it hurts. I've learned that patience is a virtue. I've learned that even the hardest day will end when the sun sets and the sun will rise again in the morning. I've learned that I will fight to my death to protect my son.

But most of all, I have learned that Sensory Processing Disorder exists. And I've made it my mission to make sure everyone else learns about it as well.

I truly believe that God sent Andy to me for a reason. He sent him to me because there were things I needed to learn, and he knew I was strong enough to handle it.

Happy Birthday, my dear sweet boy. I love you with all of my heart.

The dreaded birthday parties...

2010-03-10T18:27:00.003-06:00

It's birthday time. Andy's turning 7. Already.

I dread birthday time. I never know quite how Andy's going to do with the whole party thing.

There was that one year when he screamed and cried when we sang happy birthday to him.

Then there was the year that we decided to have the party at the bounce place. Andy got so overstimulated that he had a full on tantrum that seemed to last forever. I had to carry him out kicking and screaming.

Usually by the time it's time for cake and presents he is D.O.N.E. Like, ready to run out the door and hide done. By that point he generally has no patience, doesn't want to wait for the cake to be cut, doesn't want to sit through us singing happy birthday, doesn't want people to look at him, etc.

Every year I secretly dread it. I wish somehow I could get away with not having a party. Everything about it is yucky. I know he'll get overstimulated and then be mean and sassy and terrible the whole rest of the day.

Then there's the whole nightmare about trying to find a place to make a dye free cake. And then what will we serve for lunch/dinner? The kid only has a few things he actually likes to eat.

Present time is no fun, either. He is so out of whack by that time that he doesn't want to read the cards, he doesn't want to "pretend" to like the clothes that he opens, and just plain doesn't understand why we can't just be done and go home.

Besides, I never know what to tell people to get him. He doesn't "play" with toys. Seriously. He hasn't played with a toy in years. When I ask him what he wants, he says video games. However, I won't let people buy him video games because a) he has too many already and b) he only gets to play video games for 30 minutes a day and how many can you really play in that amount of time? So, that being said, he isn't really going to like anything that he gets for his birthday anyway because it isn't going to be what he really wants.

Yep...sounds like a barrel of fun, doesn't it?

However, the dye free cake is ordered. The lunch is planned. Lunch is something he won't eat, though, so I have to bring him something different.

And just to really cause controversy, we're thinking about waiting to open presents until after the party. You heard me correctly. We may SKIP opening the presents. I know...the horror!

It just really sucks, again, that something like a simple birthday party can be so painful for a child with SPD. Why, oh why, can't he just enjoy his day?

Maybe this year will be different. Maybe he'll breeze on through without any difficulty. Maybe the noise and attention won't set him on edge. Maybe he won't have any meltdowns. Maybe everything will be great.

I'll keep you posted...

The Lost Paper Hat...

2010-03-08T17:45:00.003-06:00

Andy had a meltdown at school last week. It was horrible...and all over a lost paper hat.

Andy's school had an evening celebration for Dr. Seuss' birthday. It was for students only, so I wasn't able to attend. I was hesitant to let Andy go because I knew there would be a lot of students, which would be overstimulating, and it was outside the norm. Let's face it, Andy doesn't do well with schedule change or things outside his normal routine. However, he really wanted to go so I figured I'd let him give it a shot.

I walked him inside the building, signed him in, and watched him walk down the hall. He was already looking all around, so I could tell it was a little chaotic for him. I sought out the principal and asked her to keep an eye on him for me. I then went home and tried to keep myself busy so I wouldn't worry too much about him.

The two hours crawled by...and I thought all was well.

I sent my husband to go pick Andy up when it was time. A few moments after he left to go get him, I got a phone call. When I picked up the phone, I saw on the caller id that it was the school. Oh, man, this couldn't be good.

It was the principal. She said, "I just wanted to call you to tell you what happened." Yikes. Not what I wanted to hear.

She said Andy had been doing very well. She kept checking on him periodically. He was having a good time, transitioning from activities without difficulty. Then, as they were moving to the last station, Andy realized he didn't have his paper Dr. Seuss hat that he had made when he first got there. She said it was just a paper hat that they had cut out and pasted together. He thought he had left it in the art room so she took him to go find it. It wasn't there. She said Andy was devastated and just broke down.

She then proceeded to go check with each group of children to see if she could find the missing hat. No luck. She said that he was so upset, and she couldn't find a way to calm him down. She asked him if he wanted to go jump on his trampline. She offered to let him make another hat. She offered to take him to his quiet place.

It wouldn't have mattered what she did at that point. Once he melts down, he doesn't even know what he needs to feel better. She said she just felt terrible because he was so upset and she couldn't do anything to fix it. She kept apologizing as if she had done something wrong. It is such a helpless feeling. It can happen in an instant. One minute everything is fine, then the next minute the paper hat is gone and it's total meltdown.

When my husband arrived at the school, Andy was sitting against the wall of the gym crying hysterically. He had one of his friends sitting by him patting his back. (How sweet is that?) Apparently he was causing quite the scene, and all of the parents were staring at him because they just don't get it. It's a good thing I wasn't there because I would have had to educate every last one of them about SPD and why he was having a meltdown.

He cried the whole way home...cried while he put on his pajamas...cried and cried and cried. He would stop crying for a minute or so, then remember the hat and cry again.

I gave him a lot of deep pressure and then I wrapped him tightly in his blanket and snuggled him until he finally calmed down. The meltdown lasted about 45 minutes from start to finish.

It breaks my heart that Andy can't even go enjoy a celebration with his friends at school. It breaks my heart that little things become big things. It breaks my heart that SPD sneaks into our lives all of the time.

It wasn't about the paper hat. If he hadn't lost the paper hat it would have been about something else. It was just too outside of his routine, too crowded, too overstimulating and he just broke down. His poor brain just couldn't take another second, and the stress and anxiety just poured out of him as tears.

I dream for the day when he matures enough to be able to tolerate the little things. I dream of the day that he can enjoy the normal every day things that most of us take for granted.

Most of all, I dream for the day that he can control his SPD instead of his SPD controlling him.

If only I had as many shoes as I do OT supplies...

2010-03-02T14:06:00.003-06:00

I have spent a small fortune on OT supplies. We have a net swing in our basement. We own therapeutic listening CDs and high frequency headphones. We have a weighted lap pad. We have chewy pencil toppers, resistance bands, a mini trampoline...I could go on and on.

I'm not complaining, really. They do all serve a purpose, and help to make Andy feel more organized. I just sometimes look at all of the items around the house and realize, "Man, we're REALLY invested in this!" We are surrounded by it, immersed in it.

I feel blessed that we have the means to do whatever is necessary for Andy. We can send him to private OT. We can buy the swing and the trampoline and whatever else he needs. I feel blessed that we can afford for me to only work part time so if Andy has a meltdown because he forgot his library book, I'm available to take it to him.

But looking around at all of these things just reminds me that we are in this for the long haul. It's not going to go away. The "tools" may change as he grows, but there will always be something. SPD will be a constant challenge in our lives, but I'm strong enough to handle it. I'll keep fighting, researching, learning, and I'll buy every last OT supply known to man if I have to.

So if that means I walk past that great pair of shoes that I really, really want, that's ok with me. Andy is worth it.

Today was a good day...

2010-02-23T21:34:00.003-06:00

Well, it wasn't a good day for Andy. He's sick. Again. That's apparently what happens when he constantly puts everything in his mouth. He gets exposed to germs. Lots of them.

My morning was crazy and chaotic between the fever and the complaints of not feeling well and the trip to the doctor's office.

But alas, the day turned out well. Tonight was the second night of my SPD Support Group. Man, is it refreshing to be with other parents who know what I'm going through.

Even better than that, I got to see a family have their "AaaaHaaaa" moment. That moment where it all finally makes sense. That moment when there is a name to put to what they've been experiencing for months and months. Boy did it feel good to help them get there.

I've said from the beginning that I'm making it my mission to educate the world about SPD. I am not trying to convince people their children have SPD. I'm just trying to prevent people from going through what I went through...years of me knowing something wasn't normal, and years of me being constantly told by people that it was fine...that he was just a boy...that he just needed this or needed that or I needed to try this or try that. I was convinced 15 different times by 15 different people that everything was ok...and that this is just who he was...and that he was just quirky...or he would grow out of it.

So, when I see people dealing with blatant SPD issues, who have no idea, or who are in complete denial, it kills me. I want to shake them by the shoulders and say, "Trust me. Don't be scared. It will be ok. Early intervention is key."

I would give ANYTHING to turn back time 3 or 4 years to have someone, ANYONE, care enough to grab me by the shoulders and educate me.

So, yes, it was definitely a good day!

Making Bad Choices

2010-02-16T14:04:00.002-06:00

One of the hardest things for Andy is making good choices when he's in a tough sensory situation. It's also one of the hardest things to parent. I know he's making the bad choices because he's overwhelmed so I feel for him, but at the same time I need to parent him in a way that teaches him the appropriate way to respond.

The perfect example of this occurred this past Friday. Our school district was hosting a "battle of the buildings" at the high school basketball game. We wanted to go and take the boys because we feel it's important to instill a sense of school spirit, and we thought it would be fun for us to do as a family. I of course knew that it may be difficult for Andy sensory wise, but he's been to several games before and tends to do pretty well.

It was about half way through the first game when the "incident" happened. Andy had gone to the bathroom, and on his way back to his seat on the bleachers, he knocked over a stack of coats that another family had piled up in front of them. Not a big deal. However, Andy just kept walking. I immediately said, "Andy, apologize and pick up the coats you just knocked off." He shook his head no, walked to his seat, and sat down.

Now, I feel it's important to point out that normally, Andy is very polite. Almost too polite in fact. He often apologizes for things that he shouldn't apologize for, thank people repeatedly for things even when it's no longer appropriate to do so, etc. (For example, last week he thanked me for something and I told him he was welcome. Then he thanked me for saying that he was welcome, etc.) Since I normally wouldn't have to prompt him to apologize, I knew this was a sensory situation.

I made him look at me, and told him again that he needed to apologize and pick up the coats. He refused. Sound familiar? It was very reminiscent of the situation that happened last month in OT.

By this time, the poor lady who owned the coats had picked them up and was looking at me with a strange look on her face. I couldn't tell if it was a "your child has no manners and I can't believe you let him behave that way" or an "it's really not a big deal why don't you just let it go" look. But either way, I didn't care.

I told Andy that he had 3 seconds to apologize or we were leaving. He refused. I collected our things, took him by the arm, and proceeded to walk out of the gym. By this point he was yelling, "NO!! NO!!! I don't want to leave. Please, Mommy, DON'T MAKE ME LEAVE!!!" Of course he also dug his heels in to make it close to impossible to move him.

We went out to the lobby and found a quiet corner where we could talk. I told him that under no circumstances would we stay unless he could make the right choice and apologize. He said he would do it, so we walked back over by the family who owned the coats.

Andy immediately hid behind me and refused to speak. I turned around and looked at him, and he said he would not apologize. We went back out to the lobby. He said he would do it, we went back in, and he again refused. This happened three different times.

For the record, I'm not usually a Mom who gives her children several chances to do the right thing. However, I was torn here because I knew he was overstimulated and in fright/flight mode. I was giving him multiple chances to make the right choice.

By this time, he was stemming pretty badly, jumping up and down, and he was tearful. My heart was breaking for him. I gave him lots of hugs, stayed calm, and tried to explain to him that he needed to do the right thing, no matter how hard it was.

Andy said he was too embarrassed to say he was sorry. I calmly explained to him that if he had apologized right off the bat, that would have been the end of it. He then said something that broke my heart. He said, "I wish I could turn back time and just say I was sorry right from the beginning." If only it were that easy.

It probably took a good 10 minutes of us standing in the lobby, him crying and jumping, me giving him lots of bear hugs and doing joint compression, before he finally agreed.

We walked back in the gym and over to the family. By this time they looked extremely uncomfortable. I wasn't sure if it was an "OMG this child is terrible and bratty" look or a "really, it's not a big deal at all/we've all been there/why are you making him upset" look. Again, I didn't care.

Andy sheepishly whispered "Sorry" and gave a completely inappropriate bilateral thumbs up sign. He then quickly turned around and asked Daddy to buy him a piece of pizza. Incident over.

As we were leaving after the game, Andy said, "Mom, you were right. I should have just said I was sorry in the first place. It would have been a lot easier."

It was a terribly difficult parenting experience. Should I have pushed it? Should I have just let it go and apologized for him? Should I have quietly explained to the people that he has SPD? I'm not sure. I felt it was important to teach him that no matter what, we need to be polite and respectful. And I accomplished that. So I think I probably did the right thing.

But sometimes it's just hard to make the right choice. Even for us parents.

A Sick Day...

2010-02-15T10:24:00.003-06:00

I got to spend Valentine's Day cleaning up vomit and wiping Andy's face as he hovered over the toilet. Sound pleasant?

For the record, this is totally the fault of his SPD. Why, you ask? I'll tell you. His stomach distress was caused by one of two reasons. Either a) one of the million things he constantly sticks in his mouth had germs on it, or b) his ingestion of red sprinkles pushed him over the edge.

To explain the germ thing...Andy likes to chew on things. I bought him some chewy pencil toppers for school. We put the first one on his pencil and within a few days he managed to break the pencil it was on and then throw it away...with the pencil topper still attached. The other ones from the package somehow disappeared. I have looked and looked and never was able to find them. I haven't ordered replacements yet.

When I went to Andy's Friendship Party on Friday I saw that all of his pencils are chewed to the point that the paint has flaked off of them and the metal ring that holds the eraser is all deformed. I was disgusted! That is so gross! I immediately talked to the principal and have arranged for him to be allowed to chew gum in class, and have ordered some replacement chew tubes for his pencils.

However, he chews on all kinds of things, even when at home. He likes to put his Nintendo DS stylus in his mouth while he plays. I have found him with the wrist strap for the Wii remote in his mouth. Or the nunchuck. Anything and everything. This is all relatively new to me. He never used to mouth things. It's been within the last 6 months, but it's gotten bad quickly. There's no telling what germs he's been exposed to in the last week.

If it wasn't germs, it was Red40. As you probably know, I have Andy on a Red40 restriction. He's been on the restriction since July 2009. My dear husband took the boys out yesterday morning to get donuts for breakfast so I could sleep in. Good in theory. However, he let Andy pick out a chocolate donut with red and pink sprinkles on it. Against my better judgement, I figured it wouldn't hurt too much to let Andy eat it. He ate the whole thing.

I should have known better. The last time Andy "accidentally" ingested something with red40...orange soda while out with his uncles...he was up all night with diarrhea and severe abdominal pain.

So, which one do you think it is? Does he have a virus from some germs he picked up? Or is he sick from the red40? I have no idea. It really could be either one. Or maybe a combination of both.

All I know is that I'm sick of cleaning up puke.

Have you Ever Wanted to Learn about Bakugan?

2010-02-10T13:10:00.003-06:00

Me either.

When you have an SPD child, you learn quickly that there are some things that they fixate on. They live it, breathe it, want to know everything about it. When Andy was 2 it was big trucks and construction equipment. He could name every piece of heavy machinery by picture. He knew if it was a front loader, a bulldozer, or a forklift. We would be driving in the car and he could point one out going the opposite direction.

Andy's latest obsession is Bakugan. He has Bakugan characters and he has a Bakugan Nintendo DS game. He sometimes watches Bakugan on television.

And he talks about Bakugan A LOT. I mean, all the time. We can be driving in the car, talking about something completely different, and he will bring up the latest Bakugan battle he had on his DS, or the ability card he wants to use.

That's something SPD'ers tend to do. They go off on a tangent, completely change a subject, and don't even think anything of it. And then they have a hard time reading nonverbal communication so when someone gets frustrated or tries to change the subject back they don't understand.

This is the conversation we just had in the car earlier today:

Me: When we go to Disney World this summer, we're going to drive there. So we'll be spending the night in a hotel on the way down there.

Andy: Did you know that Dragenoid has a G power of (whatever) and when I used my ability card of (blah blah blah) I was able to battle 5 people at once and win?

Me: Huh?

Andy: I didn't think I could do it because I only had one ability card and it wasn't the (blah blah blah) ability, so I thought there was no way. But then with my (such and such) Bakugan I was able to beat all 5 of them and now I'm ranked number one.

Me: Oh, ok.

Andy: So, Mom, if you ever play it, you need to make sure to use (such and such) Bakugan with (this or that) ability card so you can defeat (so and so).

Me: Sweetie, I really don't know anything about Bakugan. And, besides, I was talking about our trip to Disney World.

Andy: (sounding frustrated) I know Mom, but I'm trying to help you so if you ever play Bakugan (like that's EVER going to happen) you'll know what to do.

Me: Thanks sweetie. So you want to teach me how to kick your butt in Bakugan if I ever play against you?

Andy: (Totally serious) Mom, there isn't a kick your butt ability card. And besides, there isn't a way to play against me.

Me: Oh, ok.

This is the way it goes. Lots and lots of conversations that I don't understand and Andy being extremely literal. He doesn't understand sarcasm. He is completely wrapped up in whatever is in his mind.

I try really hard to not get angry at him. He isn't trying to be rude. But other people don't get that. Other people think he isn't paying attention. Or that he's just being disrespectful. But that isn't it at all. He knows what's going on...what the conversation is. He just thinks his Bakugan conversation is more important. Because in his jumbled up mind it is.

So, if you ever want to learn about Bakugan, he's your guy.

The Vestibular and Proprioceptive Senses

2010-02-09T13:02:00.002-06:00

So we all know the 5 senses we were taught about in school: sight, sound, taste, touch, and smell. But once you have a child with sensory issues, you learn about 2 other important ones: proprioception and vestibular. The vestibular sense is the “king” of the senses, and contributes to our sense of balance, our movements, and our position in space. The proprioceptive sense is input from the muscles and joints about body position, weight, pressure, stretch, movement, and changes in position in space.

Andy is vestibular hyposensitive, which means he is under-responsive to movement. He is constantly in motion, wiggling his legs, tapping his feet, flapping his hands, etc. He needs to keep moving so his brain knows where his body is. He loves to spin, and can spin in circles forever without getting dizzy. Sometimes just watching him makes me want to throw up. I don’t know how he does it! He loves to swing, which is actually calming to him, and the higher and faster the better. We purchased a net therapy swing and have it hung up in our basement. He swings every morning before school, and then whenever he feels like he needs it. He loves to jump on anything and everything. Before we had our SPD diagnosis, it used to drive me crazy to always have him climbing and jumping on the furniture. Now we have a big trampoline outside, and an exercise trampoline inside so he can jump as much as he wants.

Children with vestibular dysfunctions tend to be clumsy and uncoordinated also. They often have poor muscle tone, and lack endurance. Andy is lanky and uncoordinated in the way he moves. His trunk is weak. He hasn’t been able to learn to ride a bike without training wheels because his core isn’t strong enough and he has a hard time balancing. He can’t cross the monkey bars by himself yet. In OT, they are working with him to strengthen his muscles and build endurance.

Children with proprioceptive dysfunction are often sensory seekers. They love to jump, wrestle, crash into things, fall down, and bump people. They sometimes are too aggressive with other children and don’t realize that their pushing, bumping, and knocking into isn’t fun for others. I can't tell you how many times I've been sitting in the living room only to have Andy run full speed from across the room and jump on my back. Not fun.

Andy definitely suffers from proprioceptive dysfunction. He’s constantly trying to wrestle and rough house with his brother, and someone ALWAYS ends up getting hurt. I didn’t sign up to be a wrestling referee! He jumps, he runs and slides on the hardwood floors, he spins around in circles. He loves to he wrapped tightly in blankets. Basically anything and everything to get the sensory imput he needs.

Unfortunately children with proprioceptive dysfunction often grind their teeth and clench their jaws. Andy's jaw is so tense sometimes that his teeth chatter. We’ve started chewing lots and lots of gum to give him the oral input he needs while giving his poor molars a break. I also purchased him some chewy pencil toppers for his pencils at school so he can get some chewing in while working at his desk.

Today we have a snow day, and Andy is sensory seeking badly! He was running laps around the basement a while ago. That was fine until he shoved his brother to the ground. I redirected him and wrapped him tightly in a blanket so he could watch a movie. That calmed him for a while, and then he decided to get a big bouncy ball out to throw at his brother’s head. Again, not a good choice.

It is a never ending battle of trying to determine what his specific sensory needs are at any one time. He is starting to “get it” somewhat and will sometimes tell me what he needs and when. But some days he still needs a little direction. This is one of those times.

I think it may be time for him to go swing. That should calm him for a while. Hopefully.

Alright...My Pity Party is Over!

2010-02-04T10:11:00.002-06:00

Yesterday was rough. I was exhausted, I was spent. I needed a break.

Today is a new day, and my pity party is over.

Andy was excited to go to school today because it was the 100th day of school. There was an entire day of excitement planned. He had to bring in a collection of 100 items, and he decided to bring 100 of his organic, dye free lollipops to share with his classmates. Then we made a necklace of 100 cheerios for him to wear. (Great fine motor practice for him, stringing all of those cheerios!)

When we pulled into school and saw the giant 100 that the kids had to walk through to go into school, we smiled. Andy smiled because he knew it was going to be an exciting day. I smiled because it reminded me that each day is new and exciting.

I just know it's going to be a good one today.

Sometimes this SPD thing just sucks!

2010-02-03T20:26:00.002-06:00

Bear with me here.

I'm having one of those "poor me" moments.

Why is it solely my responsibility to schedule, coordinate, and keep all doctor, OT, and school appointments?

Why is it me who gets the brunt of the emotional meltdowns?

Why is it me who has to constantly remind others in our family that Andy isn't being difficult...that he has SPD?

Why is it me who has to say, "I really don't think it's a good idea to go to the basketball game/birthday party/other loud overstimulating event with Andy right now"?

Why does God overestimate my abilities to hold it together?

I go through phases where things are ok...we have a good routine, Andy is doing well, life is good. Then we go through periods where he's all out of whack and emotional, and it becomes absolutely draining. Times like those make me wonder why.

Why me?

Why him?

Why our family?

Why is it just so hard?

Mr. Emotional...

2010-02-02T17:18:00.003-06:00

Andy has been very emotional the last several days. Lots of fits, lots of crying, lots of sadness...about anything and everything.

Last week he had a morning fit. He slept in (again) and that threw him off of his schedule. Then Daddy told him he couldn't have chocolate donuts for breakfast, which sent him into an immediate high pitched cry. I was so angry at my husband for picking a fight with him about the donuts. He is the one that bought the donuts for them to eat for breakfast, so why tell Andy he can't have them? Is it really worth arguing about? Is it worth sending him into the early morning tirade that's going to throw off the rest of his day?

Then there was the crying because I couldn't find his hat and gloves and he wanted to go outside to play. My dear husband put the gloves/hat "away". In other words, he didn't want to put them where they went so he put them somewhere else where they didn't belong and neglected to tell me. So, when I went to find them they were no where to be found. Andy immediately began to cry and tear off his snow clothes. Luckily Mommy came to the rescue and found an old long lost pair for him to wear instead.

Then I got a call from the school because Andy didn't have his library book to return on library day. He was crying so hard on the phone that we couldn't understand what he was saying and my husband was beginning to panic thinking someone had kidnapped him and he was calling for help. Luckily his teacher got on the phone and explained the problem. That was an easy fix...I hopped in the car and brought him his book.

Then there was the crying because Daddy left for a business trip. I'm talking full on sobbing, barely catching his breath type of crying. It was so pitiful and sad. He would calm himself down for a minute or so, and I would think he was better, and then I would hear the sobs start to come again and he would be hysterical again. It continued on like that for quite some time, and there was nothing I could do to make it better.

Throw in the few crying fits about his brother being too loud, or playing too rough, or not doing what Andy wanted him to do on the Wii game, and it's been a mess around here.

Even as I sit here typing this, he's come inside crying two different times. The first time was because Nate threw snow at him. Now, just to clarify, they were having a snowball fight. But, I guess Andy wanted to play but not have anyone actually throw snowballs. The second time he was trying to climb on the neighbor's retaining wall (which he knows he's not supposed to do) and fell and bumped his head. He of course tried to say it was his brother's fault, but I gently reminded him that he isn't supposed to be climbing on the wall anyway, so it was his own fault for doing something he knows is not safe. After the second time I told him maybe he should take his snow clothes off and just come inside, to which he responded with instant tears and crying.

I'm not sure if it's just a bad week, if something we're doing isn't helping, or what. I'm just overwhelmed with all of the emotion, and trying really hard to not say, "Just get over it!" I mean, I'm not trying to sound callous, but give me a break! I've had about all the crying I can take for the week. I'm pretty sure if it continues too much more I'll be sitting on the kitchen floor crying myself.

And then who will I complain to?

Young Love...

2010-01-28T18:33:00.003-06:00

When I picked Andy up at school today, he immediately said, "You'll never believe what happened today." He had the saddest face and I couldn't imagine what terrible thing had happened. Had he been bullied again? Did someone make fun of him? Did he lose something important?

Nope. His "girlfriend" decided to "go out" with another boy. Yes, they are first graders talking about falling in love and going out. Apparently Andy overheard a conversation between the girl he called his "girlfriend" and one of his best friends. They were saying that they were "in love" and one of them asked the other if they should "go out."

Andy was devastated. He told me he had been brainstorming a way to make them breakup. He had considered writing a mean note calling the girl stupid and making it look like it was from the other boy.

Is this really happening? At 6? Someone pinch me so I can wake up from this horrible dream. I didn't want to act silly about it, because I wanted to validate his feelings. But I had no idea how to handle the situation.

I told him that he can't make anyone love him, and if this girl is "in love" with someone else, he needs to just move on. Besides, she's "in love" with one of Andy's best friends so he should be happy for them. Then for good measure, I told him he's much to young to be worrying about finding a girlfriend.

Phew. I hope I handled that correctly. I thought I had at least 10 more years before I would have to have that discussion!

Relationships are often hard for SPD kids. They tend to have Emotional Dysfunctions so they have difficulty relating to and/or getting along with their peers. They are often introverts, prefering to play on the outside, or in small groups. They have difficulty holding "meaningful" conversations with others, and have trouble interpreting normal social cues and nonverbal communication from others.

Throw in their tendency to be impulsive, aggressive, sensory seeking, and easily frustrated, and lets just say SPD kids aren't always the most fun to play with.

Andy seems to be feeling better about his "girlfriend" falling in love with another boy. Let's hope tomorrow is a better day for him.

It's Been a Rough Few Days

2010-01-28T08:28:00.004-06:00

Andy slept in again yesterday. That throws him off big time. Then his Daddy told him he couldn't have what he wanted for breakfast and it all went downhill from there.

I hate when the morning starts with drama. He gets all worked up, and then it just spills over into the rest of his day.

This morning it was something entirely different. Andy came in and was dressed in mismatched clothes. I seriously wanted to laugh at him and ask if he was kidding, but he was so proud for getting himself dressed without having to be asked a million times. He had on a bright red hoodie (his clothing item of choice) and maroon gym pants with a navy stripe down the side.

Me: "Sweetie, that shirt doesn't go with those pants."

Andy: "Well, this is what I want to wear and I'm not changing it."

Me: "You just need to change either your shirt or your pants."

Andy: "Nope. I'm wearing this."

Me: "Why don't you put some jeans on with that sweatshirt?"

Andy: "Because I don't want to wear anything that I have to button."

Bingo.

He's getting to the point that he will not wear jeans or pants with snaps. His fine motor skills are lagging, and he can't button or snap well. He used to wear his jeans and just pull them up or down without unsnapping them. Then he started just leaving them unsnapped all the time and just using the zipper. Now I've noticed lately that he keeps wearing the same 3 pairs of gym pants over and over again.

I probably should have just let him wear the mismatched clothes. It certainly wouldn't have hurt anything. I just had a really hard time letting him go to school without matching. Isn't that weird? I wonder why it was such a big deal to me.

Guess I'd better head to the store and hope that someone still has Nike pants for sale. Sigh.

SPD Support Group Meeting Tonight!

2010-01-26T09:39:00.002-06:00

For those of you in my area, the Sensory Processing Disorder and Sensory Issues Support Group is meeting tonight at 7pm, in the Parents as Teachers playroom at Danby-Rush Tower. Hope to see you there!!

It is Apparently Meltdown Day, and I Didn't Get the Memo...

2010-01-25T17:16:00.003-06:00

Both boys are crying right now. Loudly, might I add. My dear husband is off at work, and I'm looking for a good pair of ear plugs to drown out the noise.

Andy is crying because he's on time out. He's on time out because he was playing Wii with his brother and they were having a hard time play nicely. After breaking up a few petty arguments, I told them to turn the Wii off. Now.

That was followed by lots of yelling, begging, and comments such as, "You are so mean!" or my personal favorite, "You are the meanest Mommy ever!!!" Yep. That's me. I'm just looking for ways to ruin your day.

It all started because Andy was doing his vocal stemming while he played. Andy hums. He ALWAYS does this when he's concentrating, when he's upset, when he's excited, when he's angry, etc. He ALWAYS hums when he plays the Wii. For some reason, this was irritating Nate tonight and he kept yelling at Andy to stop.

Well, as you SPD parents know, most of the time the SPD kiddos don't realize they are stemming when they are doing it. And, besides that, Andy HATES for someone to point it out. Andy angrily explained to Nate that they only way he could "beat" the level on whatever game they were playing was to "make the noise."

Nate didn't care for that explanation, so there was lots of yelling back and forth, then apparently some pushing and shoving, and then Andy had enough. You can only push him so far before he "snaps." I heard a loud "thump", then a wail from Nate, and then Andy came running up the stairs quick as lightening.

I asked, "What did you just do to your brother?"

"Nothing!" he yelled, followed by a long stream of runon sentences in his really rapid speech.

Thus the time out incident. Because I am the meanest Mom ever.

And they wonder why I only allow them 30 minutes of Wii time a day.

I have a feeling it's going to be a long night.

Everything is for a Reason

2010-01-24T18:59:00.002-06:00

A good friend directed me to a blog this past summer that had this quote on it, and it struck a chord with me. It made me feel a little less hopeless, and a little more secure in my job as Andy's Mom.

"God does not give us more than we can handle. He gave us His special children because He knew that we would be able to handle them and give them all the love and support they need through the hard times and the happy, yet stressful times. He believes in us; we can do it! Our children need us. Take a deep breath, sit back and know that through these times we are not alone; He is always just a prayer away."

This is the hardest thing I will ever do. But I will continue to work everyday to make his life easier, to give him the best possible chance to succeed. Because I am his Mom and that is what Moms do.

You Know You Have an SPD Kiddo When...

2010-01-24T11:22:00.004-06:00

This is so funny and true. I borrowed this from the great blog http://www.hartleysboys.com. Check it out for more laughs and helpful information.

You Know You Have an SPD Kiddo When. . .

1.You judge every playground by the number of swings or spinning equipment it has.

2.You hear the Red Robin crew begin to clap and you immediately cover your child’s ears to avoid the Happy Birthday song.

3.You have memorized where the automatic flushing toilets are in your whole town.

4.You can, all by yourself, cover the automatic flushing mechanism on a toilet, help your child to use the bathroom , do a “clean butt” check, and yell, “1-2-3!” all without your child being “in” the stall when the flush goes off.

5.You can think of 5 ways to use a can of soup, and none of them require opening it.

6.You hear about a new “spa” that allows you unlimited time to use their showers, pools and hot tubs and the first thing you think is, “My son would love that!”

7.You have a trampoline in your main living area (probably not far from the TV or the kitchen.

8.You have objects that are OK for “chewing” and are not edible.

9.You have visual aids so your child can get himself ready for school independently.

10.You can explain the difference between an IEP and a 504 in one sentence.

11.Your discussions with your doctor require a better understanding of acronyms than doing your own taxes.

12.You wonder if you can write off a swing in your playroom as a “medical expense.”

13.You haven’t been on vacation...pretty much ever.

14.You consider reading the Support Group List Serve an “afternoon out with friends.”

15.You have turned down more invites for parties than you attended during YOUR ENTIRE college career.

16.You spend equal amounts of time convincing others that your child is “not” OK as you do that he “is” OK.

17.Before your child was one year old, you had your first doctor ignore your concerns.

18.You can, from memory, give Handwriting Without Tears verbal cues without hesitation.

19.You have a pair of earphones that were so expensive; your husband can’t believe you let your child use them.

20.You carry gum, bubbles, protein snack and ear plugs in your purse; but no lipstick, powder or mirror.

21.You have looked into buying MULTIPLE of your child’s “favorite” toy so that if need be, you could secretly replace it.

22.You have heard more than one person insist that you have to spank more.

23.You have had at least one family member stop inviting you over to their house because they think your child is a bad influence on theirs.

24.You can give a minimum of 3 things OTHER than a chair that a child can use to sit on.

25.You have given up the idea that your child will *sit* through an entire meal.

26.You have seen so many doctors, it would make most women’s head spin, but for you, you can recite them, by name, and date, and what they did or did not do for your child without hesitation.

27.You remember the day you found support.

28.You remember her name, too.

29.You pass your new found "support" on to everyone you can think of.

30.You wouldn’t trade being the mom of your kid for any other “typical” kid in the world.

Copyright Hartley Steiner 2008-2010

Mom, I'm Having a Malfunction!!

2010-01-22T17:44:00.002-06:00

Andy had a rough start to the day today. First of all, he slept in. Those of you who know Andy know that he NEVER sleeps in. I should have known it would lead to something not good.

Once he stumbled out of bed, 30 minutes later than usual, no less, he was in a sort of fog...like he wasn't really ready to be awake yet. He immediately laid down on the couch and refused to eat breakfast until he was able to "wake up" a bit more.

He finally sat up and was ready to eat breakfast. That's when the complaining started. He told me that he "didn't feel like" himself, and that he was "having a malfunction". I thought his choice of words was very appropriate! I'll bet that is what SPD feels like...a malfunction. Your body doesn't work correctly, your senses are exaggerated, things just "don't feel" right. Poor guy!

Because he slept in, he was off of his normal schedule. Unfortunately, Andy is a bit OCD with his schedule. He has never handled deviation from his schedule very well. The whole rest of the morning just felt "off" and I could tell he was having anxiety just from the schedule change.

By the time he ate breakfast, got dressed, and did his 15 minutes of swinging, it was almost time for school to start. As I drove him to school, I warned him that we were going to be arriving just before the bell, so he would not have time to play computers like he normally does before school.

His little face just looked so sad and defeated. I felt terrible for him. I can't imagine what it feels like to be him, to struggle with SPD and have all of those feelings and emotions and strange "malfunctions".

I walked in to school with him and explained to the teacher about his rough morning and his "malfunctions", and asked her to keep an eye on him for me.

And then, as much as I hated to, I had to walk out of the school leaving him there to cope alone.

This just doesn't seem to get any easier...

SPD is an Isolating Disorder

2010-01-21T10:13:00.004-06:00

I keep telling people that I feel like SPD is an isolating disorder. Most people don't understand what it is, so it's hard to find people to talk to about the day to day issues.

Another friend and I were joking last night that we need to have a "club" of SPD parents. We could have matching letterman's jackets, and get patches for each new diagnosis we are given, or for each year of OT services.

Obviously we are joking, and I hope it doesn't seem offensive that we talk about it in such a light hearted way. It's just that this whole thing is so isolating.

I had an episode a few months ago that will prove my point. I was at work for the day, off campus from the school where Andy attends. I got a call on my cell phone in the middle of the day from Andy's principal. Apparently there was an assembly scheduled for that particular day, and as the day progressed, Andy was showing a lot more anxiety, he was getting much more intense, was more "wiggly" than usual. The counselor was concerned as well as his teacher. The principal wanted to know if I had any ideas of things for them to do to help him out.

I had a feeling when I sent him to school that morning that he was stressing about the assembly. I mean, what could be worse for an SPD kid than sitting in a gym on bleachers with 200+ other people with bright lights, music, etc? Ugh. He complained before school about a belly ache, so I had a feeling it was already weighing on his mind. Unfortunately I had to go to work, so I sent him to school hoping for the best.

When I got the call from the principal, I felt sick in my stomach...completely helpless. I tried to call my husband (who was working from home that day) but he was on a conference call so he wasn't answering the phone call. I was frantically trying to think of what to do to help Andy out. I called a coworker back at the office and asked her if she could help me out. I asked her if I could have the principal bring Andy to her, and he could sit with my coworker instead of attending the assembly. She said absolutely.

I called the principal back, told her of my idea, and she agreed that it would be the best option. My coworker went and collected Andy, and he hung out with her during the assembly. Crisis averted.

This whole situation was extremely stressful for me. My heart was breaking for Andy because I knew he was upset and nervous about the assembly. I felt helpless because I was off campus and had to rely on other people to help him out.

When I finally left work that day, I called my Mom to vent. I was just emotionally drained from the whole experience. Unfortunately, after I spilled the whole story and took a breath, my Mom said, "Why in the world would they let him skip the assembly? Why would an assembly bother him?" Ugh.

She just doesn't get it. Most people don't. And it sucks. I want someone to listen and say, "OMG! That must have been stressful!" Or "Tell me about it...I had something similar happen a few weeks ago!" Anything.

I'm tired of people thinking he's manipulating me. Or that he's just a bad kid. Or it's just a behavior thing. Or assuming that he just didn't want to go to the assembly so he figured out a way to get out of it.

I just want people to "get it".

I Dig Other Parents who "Get it"!!!

2010-01-20T22:02:00.002-06:00

I had a terrific night out tonight. No, I wasn't on a date with my husband (though we do need to have a date night soon). It was even better than date night. I got to sit in a room with 10+ other parents who also have kids with SPD. It was like heaven.

Those of you without SPD children probably wouldn't understand, but it was so fun to be able to laugh with someone about a kid throwing up on his plate at dinner. Or the girl who refuses to have her hair washed. Or the boy who will only eat baby food.

We all stood up and told our SPD stories, and giggled and laughed as everyone else told theirs. Not because the stories are funny, but because we've been there. I mean, is there really anything funny about a child who wants to be so in your face that they think it's ok run full speed and jump on your back when you aren't expecting it? Or anything funny about a kid smelling a food and immediately gagging or throwing up on their plate? Or anything funny about a child covering his ears and cowering when a sound is too loud? Not really. But it is nice to know I'm not the only one dealing with SPD issues.

And let's face it...humor is the only way to survive this.

We are Starting a Sensory Processing Disorder Support Group!!!!

2010-01-14T09:05:00.002-06:00

A coworker and I have decided to start a SPD support group in our area as a place for parents to get together and discuss the challenges of parenting children with SPD and other sensory disorders.

Our first meeting will be Tuesday, January 26th, at 7:00pm, and then will be held the 4th Tuesday of every month. The meetings will be in the Parents as Teachers office at Danby Middle School.

Please come if you have a child with this disorder, if you know someone who has this disorder, or if you just want to learn more about this disorder. Please tell anyone and everyone who you feel may benefit from this type of support group.

I'm very excited about this, and hope to see some of you there!

What's the Deal with Red Dye #40?

2010-01-11T19:16:00.003-06:00

Those of you close to our family already know I don't allow Andy to have anything containing Red Dye #40. I had someone ask me recently why I had restricted it, so I figured it was a good time to talk about it on my blog.

Red Dye #40 is an FDA approved dye used to color foods and food products. It is derived from petroleum and provides no nutritional value to the foods that contain it. It is strictly there to change the appearance of a food. Unfortunately, it is not only used to make foods red. It is sometimes used to make orange foods, purple foods, brown foods, etc. It is even sometimes used in combination with yellow dye to make baked products more golden.

You would be shocked to discover how many foods actually contain this dye. Some of the foods aren't even red!! A few of the strange ones I've discovered are canned biscuits, crescent rolls, white cake mixes, Eggo Waffles, and even some brands of tortilla chips! I have to read the ingredients label on every single item I buy at the grocery store to make sure I don't accidentally purchase something that contains red40. There are many cereals that also contain red40. It is even in some medications...antibiotics, vitamins, tylenol, advil, etc!

So why is red40 bad? In 1970, Dr. Ben Feingold (an allergist) discovered the link between red40 and behavior problems. Red40 can cause aggression, impulsivity, hyperactivity, attention deficit, and tantrums in some children and adults. This is not an allergy per se, but more of a sensitivity to the dyes.

The problem is so widespread, and the research so damning, that the UK has begun a push to remove red40 from its foods. Several foods in the UK use natural dyes, such as those from plants and vegetables, while those same foods in the US are made with artificial dyes. For example, McDonald's has removed red40 from their strawberry shakes in the UK, but continues to use red40 in the US version.

The US has not taken a stance against these harmful dyes, and the FDA does not test the dyes for safety. The FDA does now require that foods containing artificial dyes list those dyes on the ingredients label, but the FDA states that they feel the dyes are safe for consumption.

I just wonder why, if there are natural options available, do manufacturers continue to use these potentially harmful artificial dyes in their foods?

We decided to put Andy on a red dye restriction after I repeatedly came across red dye warnings while doing research on SPD. We removed the dye from his diet on a Friday, and by Sunday we had seen a huge change in his overall mood. He was much more mellow and laid back. We were shocked by the dramatic change!

After sharing my story of success, two friends of mine decided to try removing red dye from their households. One had a child with ADHD, and one had a very spirited child who threw frequent tantrums. Both saw marked improvement in a matter of days.

So that's my story. If you are dealing with tantrums in your house, or any of the other side effects I mentioned, see if you can relate it to red dye 40. It is very possibly the hidden culprit.

Below Freezing Temperatures, Snow, and SPD do not mix

2010-01-07T12:04:00.003-06:00

Today is a snow day. I remember, as a kid, praying to hear my school on the list of closings when the weather was bad. Now, as an adult, I dread it. One of the worst things to do with Andy is disrupt his schedule. Don't get me wrong...he loves getting out of school. It just isn't good for his SPD. Any deviation from the norm causes him anxiety, and when he does eventually go back to school, he's going to be all out of whack.

Unfortunately, the snow came overnight and school was cancelled. The kids woke up, saw the snow, and started cheering and yelling. Then they immediately asked to go play in the snow. Andy wanted to build a snowman. Too bad it's the light fluffy snow that you can't make a snowman with.

The boys finally convinced me to go outside in the below freezing temperatures. We spent a good 15 minutes bundling up against the cold...including snow pants, snow boots, gloves, and hats. We got outside, Andy shoveled one or two shovels of snow, made a snow angel, and asked to go back inside. LOL! He lasted 10 minutes and then went inside. I asked him if he wants to go back outside later and he said no way.

I hope the snow goes away so he can return to school and get back on schedule. Until then I guess we'll stay inside in the warmth.

Acting out in Occupational Therapy...

2010-01-06T20:19:00.003-06:00

So, today Andy had OT. We missed the last session because he spiked a fever a few hours before our appointment. He seemed excited to be going but upon further probing, I discovered he was only excited because I always let him play his Nintendo DS on the hour drive to and from therapy. Nice.

I was nervous when we walked into the office because the waiting room was PACKED with parents and children. It was extremely loud and over stimulating (even for me!) so I knew it had to be rough for him. Luckily, he was so focused on playing Bakugan on his Nintendo DS that he didn't seem to notice.

They took him back for his therapy session and I was left in the chaos that they call a waiting room.

A few minutes before his session should be done, Andy came running into the waiting room laughing hysterically with his OT Ellen nowhere in sight. This was not a good sign. A good 30 seconds later Ellen came along with a not too happy look on her face. She reminded him that his session was not done yet and he should not be running off without her. He just giggled and ran back with her into the therapy room. Not good.

A few minutes after that his session was finally over. For real this time. Ellen came over to talk to me and Andy immediately began jumping up and down, flapping his arms, making silly noises and being disruptive. I sarcastically thanked Ellen for turning the quiet calm son I brought in to the appointment into this crazed hyperactive boy! (Totally not her fault, but it was nice to blame someone.) As she and I talked, he proceeded to smack her butt, pretend to karate kick her, etc. She calmly reminded him that this was not an appropriate way to get his "wiggles" out, and asked him to put on his coat instead. He politely put his coat on, then ran around in circles and smacked the butt of the poor OT student that was lucky enough to be standing within reach. OMG! I cringed. He was completely on sensory overload!

The OT student politely told Andy that it was not nice to hit. He responded by running to the corner, sitting down and pulling his knees to his chest, burying his face. Not at all awkward. Now, let me remind you, the waiting room is jam packed with people. Ellen goes over to talk to Andy, who is still in the fetal position in the corner, while the OT student tries to comfort me by telling me how sweet my son is. Oh yeah. He's a real angel! (He really is a sweet boy, but somehow that got lost in translation.)

I decided that I should go somehow collect my son to leave. When I got over to him, I heard him loudly tell Ellen no about something. Apparently she had the audacity to tell him he needed to apologize to the student. He didn't seem to care much for that idea. Ellen told him we had plenty of time to wait, and that we could all just hang out together until he decided he was ready to apologize. He told her that an apology was "not in his plan". I secretly thought about joining the crowd of other people in the waiting room, and loudly saying, "Whose child is that?!?!" But I didn't.

I instead told Andy that I would go ahead and have a seat until he decided to apologize. I mean, why should I keep standing? This could take a while.

After contemplating that for a minute, he stood up, said he was sorry, and immediately was ready to leave. I knew it was going to be an interesting night.

When we got to the car, he asked for his Nintendo DS. Seriously? I asked him if he thought he deserved to play it after his outburst inside. He said, "No. I don't think I should." Good. I'm glad we agree.

There is never a dull moment when you live with a child who has Sensory Processing Disorder. I'm hoping someday I'll get the hang of this.

Our journey up to diagnosis

2010-01-05T20:27:00.007-06:00

I could sit and write for hours about the symptoms of SPD, but I don't have enough time for that right now. So, I'm going to talk about the main one that eventually led to my son's diagnosis.

One of the most common symptoms is feeding difficulties/extreme pickiness. My journey into SPD started because of my son's pickiness. My son ate everything until around his 2nd birthday and then he stopped eating most foods almost overnight. He got to where he only wanted chicken nuggets, macaroni and cheese, some fruits, or peanut butter and jelly. I asked my pediatrician about it at his 2 year check up and she said it was just a "stage" that he was going through and to just wait it out. Well, that year it just got progressively worse. I asked again at his 3 year check up and she said it was a power struggle and not to make a big deal out of it. Through the year it got even worse. I brought it up again at his 4 year check up. She said that if he wouldn't eat what we were having to give him a peanut butter sandwich because he was eating almost no protein and she thought it was a good alternative.

It was to the point that if we tried to make him eat something, he would immediately vomit on his plate. That's always nice when you're trying to enjoy your dinner. Every meal time was a battle. Lots of gagging, vomiting, crying, arguing, pleading, bribing. We tried telling him he would have to sit at the table until he ate his food and he would sit for an hour until we gave up. We told him just to take one bite and he would gag and vomit. It was horrible! Nothing worked and I was just so angry! I mean, just eat it already!!!

I learned early on that there was no forcing him. He wasn't going to do it. He would go to bed hungry, I could take away things, send him to time out, it didn't matter. He just plain wasn't going to eat it.

I went to people for support but they thought I was just a weak mother that was somehow being manipulated by a 3 year old. I can't tell you how many times I heard, "If he's hungry enough he will eat" or "When I was young I either ate what Mom made or I starved" or "I can't believe you are going to make him something different". What would they rather I do? Let him starve himself to death?

It wasn't until his 5 year check up that I finally got somewhere. I actually told his pediatrician that I would not leave her office until she addressed the issue and gave me some sort of guidance. I was so tired of being told it would eventually get better, then watch it get worse day by day. She recommended that I take him to an Occupational Therapist for feeding therapy.

I gladly made an appointment with the OT, hopeful that they would have some answers for me. One of the first things they had me fill out was a sensory profile. I didn't understand what it was so I asked the receptionist to explain. She said that it was a checklist to determine his sensory integration issues. I discovered that it is almost NEVER just a food issue. The food/feeding issues are almost always associated with SPD.

I was shocked. I had never thought of him as having sensory issues. I knew that he didn't like to have his hands messy or do messy play. I knew that he flapped his hands when he was excited or upset. I knew that as a baby he had a hard time settling down to go to sleep. I knew he threw occasional tantrums for things that I thought were trivial. I knew he always complained about the water being too hot when it felt just fine to me. I knew he was jittery and had a hard time sitting still for long periods. I knew he liked to jump and climb and crash into things.

I never, ever, knew that those things could point to a bigger problem. I truly thought he just had a feeding issue. As we went through the evaluation with the OT it became apparent right away that he had SPD. I had never heard of it before but was extremely grateful to finally have a name to apply to the things we had been through for the last few years.

So, that's our story. There's a lot more to it than that, but it's overwhelming so I have to do it in stages.

Doing My Part to Educate the World About Sensory Processing Disorder (SPD)

2010-01-05T17:45:00.004-06:00

I've been joking for months with my friends that it is my goal to educate the world about SPD. It's kind of hard to do that from my living room. So, I've finally decided to upgrade to a blog to reach a bigger audience and hopefully be a support to other parents parenting a child with this disorder.

I will start by answering the obvious question. What is Sensory Processing Disorder (aka SPD)? It used to be known as Sensory Integration Disorder but has been changed to better explain the disorder. To understand SPD, you first have to understand what sensory integration is. Essentially, at any one time our brains are being bombarded by external stimuli from our senses. There are multiple sounds, smells, things to see, feel, etc at any one time. Our brains sort through this information and tune out the non-essential stimuli (ie: background noise, the feel of the air blowing from the heater vents, the feel of our clothes on our back, etc) and pay attention to the essential stimuli such as the voice of the person we are speaking with. This is sensory integration.

People with Sensory Processing Disorder have a breakdown in the way the senses are interpreted. Their brains have a difficult time sorting the incoming sensory information. There is almost a traffic jam of sorts. To make things worse, their senses are often heightened. They smell things more strongly, they feel things more deeply, sounds are louder, etc. This combination can cause an overwhelming response physiologically, emotionally, and behaviorally.

Let me give you an example. Imagine you are sitting at your desk in a work setting. You are busy typing away on your PC working on whatever project you've been assigned. As you're typing, there are people all around you doing the exact same things. Your brain tunes out their conversations, the phones ringing at their desks, the sound of the clock ticking. Your body knows where it is in space. You are able to focus on your work. Then a coworker stops by and says hello. Your brain tells you to stop your work, look at the coworker, and respond.

A person with SPD would have a very different experience. It would be nearly impossible to tune out the constant conversation around the office and the ringing telephones. The ticking of the clock would sound extremely loud. The tag on their shirt may bother them to the point that they have to cut it out. They may feel the air blowing from the vents to the point of discomfort. They may smell someone's lunch from across the office and gag because it smells too strongly. Their brain may not "remember" where their body is, so they feel the need to constantly fidget and wiggle in their chair. When a coworker stops by to say hello, they may not even notice because their brain is being so bombarded with stimuli that it doesn't know how to respond.

Stanley Greenspan, the author of "The Challenging Child" (1995) described what SPD feels like this way:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Doesn't sound very fun, does it?

The problem is that a huge part of the population has never even heard of Sensory Processing Disorder. There are physicians that don't even know anything about it! But unless you understand what it is, it's hard to be tolerant of the idiosyncrasies that a person with SPD exhibits.

Whew. That was a long explanation. I guess I'll leave you with that for now. I'll come back another day to talk about some of the symptoms of SPD. I'll also start sharing stories about how SPD effects my child, how I deal with some of the behaviors, and I how I try to cope day to day with this frustrating, misunderstood disorder.