Wednesday, March 31, 2010

Three things I learned today...

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.

Monday, March 29, 2010

Just another reason I hate birthday parties...

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 he was going to go to the 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.

Thursday, March 25, 2010

It's official...

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.

Tuesday, March 23, 2010

Another OT eval...

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?

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.

Monday, March 22, 2010

This is the Weirdness that is SPD...

Andy went to bed 30 minutes ago. 8:00 on the 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.

Friday, March 19, 2010

I'm in denial...

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 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.

Tuesday, March 16, 2010

Dear Useless Worker at the Eyecare Place,

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 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.



Sunday, March 14, 2010

The Verdict Was...

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!

Friday, March 12, 2010

Today marks the beginning of another year...

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.

Wednesday, March 10, 2010

The dreaded birthday parties...

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...

Monday, March 8, 2010

The Lost Paper Hat...

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.

Tuesday, March 2, 2010

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

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.