Tuesday, February 23, 2010

Today was a good day...

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!

Tuesday, February 16, 2010

Making Bad Choices

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.

Monday, February 15, 2010

A Sick Day...

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.

Wednesday, February 10, 2010

Have you Ever Wanted to Learn about Bakugan?

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.

Tuesday, February 9, 2010

The Vestibular and Proprioceptive Senses

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.

Thursday, February 4, 2010

Alright...My Pity Party is Over!

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.

Wednesday, February 3, 2010

Sometimes this SPD thing just sucks!

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?

Tuesday, February 2, 2010

Mr. Emotional...

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?