Wrap me up and call me Calm!

Tyler moving his way across the couch.

I am sure that many of you have seen this image before. With your own child or someone you know. This in the past has been very typical of Tyler. He has always had a virtual inability to sit still. No matter how much he may want to. Not even to sit and watch something that he enjoys. Not even a 30 minute show let alone a whole movie or sporting event.

Aside from just moving around... Tyler; fidgets, wiggles, rocks, picks at his fingers and toes, talks constantly, Who is that?, Why did they do that?, What's going on?..climbing on/over people.

Tyler laying across his sister.

I wanted to give the weighted products a whirl. I had heard many "miracle" stories. I was envious. I wanted my own miracle story. I wanted it to be that easy. Anyone whom has ever looked into any Autism related goods knows that nothing is cheap. So I dragged my feet on the thought "That's a lot of money for just a maybe". But then I was finally struck by another thought that broke my hang up "I spent $80 for an 9 year old to have a watch that would show him when his heart rate was rising so he could SEE when he was getting upset/too excited. An $80 watch that he broke in an attempt to make it SHUT UP because it beeped every time he accidentally touched the sensor pad." That had been a maybe kind of move...hadn't it? If I could gamble on a watch then I could take a gamble on a blanket.

Expected miracle.

So I bit the bullet. I began looking for what I deemed to be "reasonably priced" on top of a pattern that Tyler would willingly use no matter who was around (the goal here is to have something to help him in class at his desk). I found someone who had a product that fit this bill. Did some price converting (they were from over seas) factored in shipping....I was willing still....but...I got hung up. To do it? Don't do it? I then found someone who fit the above bill and without the conversion and over seas shipping the cost was half. SOLD! I wanted this miracle SO bad. I was picturing all the things that no medicine had ever been able to give him. I wanted him to have peace. I wanted him to be able to sit back and enjoy watching something. For crying out loud the poor kid can't even sit still to play a video game. I guess you could say I wanted some hope for him. I find it so disheartening when teachers complain to me about how he's disturbing the class with all of his moving around and wandering. Plus the talking. I always wonder how much better could his grades be if he could actually sit in his seat and listen to his teacher...I was desperate to have a miracle story of my own.

Tyler getting in some quick computer time before baseball.

We had a late baseball game after school the day that the lap pad came in. Tyler immediately loved it. We have now had it for almost a week and he still says every time he puts it on how amazingly good it feels. He laid in the middle of the living room floor and played on his lap top with the lap pad across his back legs. He kicked his legs around, but otherwise he was pretty still. Not quite the miracle I had been wanting. Not that instantaneous effect I had been so desperately wanting. 

*Yawn*

After the game Tyler got showered and we took a few minutes to study some states and capitals before bed. He sat with the pad in his lap. Still absolutely over the moon excited about it. He messed around. Moved around. He finally laid down and put it across his chest and began to yawn (shown above). It was past his bed time. We called it a night, and he went upstairs to bed with his new "pal" in tow.

Sleepy time!

Tyler now sleeps every night with this lap pad draped over him. He tells me, "It feels soooooo goood!". The excitement finally has died away I think about the new addition. His sister spent the night with a friend so we got a Red Box movie. Tyler sat between mom and dad through the whole thing. This week we had lots of baseball games with just one day in between. So we had to pause the movie a couple of time to switch the laundry over or to get it out. Just in case mom and dad were not noticing how awesomely still he had been sitting and quietly he would take these pauses to point it out for us. Since he has been sleeping with it upstairs it hasn't been downstairs much. Last night he came and sat between us again and he was his usual mess of a self. Fidgeting. Picking at his toes. Wiggling around. I finally said, "Tyler why don't you go get your lap pad". He ran off and got it. When he came back and sat down with us....he didn't move. 


I got my miracle story. I got the hope I desperately wanted. Now through out the summer I have to get another lap pad for him to take to school. An actual blanket for him to sleep with. Tyler even requested that I buy one to give to my ex-husband so that when he stays the night over there he won't have to be afraid. 


If you are in the market for your own miracle I highly recommend Jennifer from A Positive Sensory Products. She not only fit my bill of "reasonably priced"and good selection of style, she also made the whole experience personal. I never once felt like myself or my son was just a quick sale to some chick who didn't nor would ever care about our needs. You can find her on facebook either by searching for "A Positive Sensory Products" or find her on Tyler's page.

Twinkle, Twinkle, little star...How I wonder...is this the first time I've seen you?

I have always had a deep love for the ocean. I grew up in Florida. My husband and I have kept saltwater fish tanks. I.love.the.ocean. So I thought I'd ask if everyone would be on board with going to the Aquarium for Mother's Day. Who would dare tell mom "No" on such a day right? Not to mention my family also loves the ocean.....just maybe not like I do.

We have a membership there. We don't go as often as we do to the zoo, but we have a membership because we go often enough. Several times a year. For the most part nothing changes from visit to visit. Maybe some baby fish have arrived or one of the monkeys is sporting a little one on their back. In general, nothing too earth shattering. It's just nice to be there with my family. To go to each display and look inside, and name the inhabitants without looking at the t.v. monitor on the side.

That is not how Tyler goes about these things. This particular tank here. I have many pictures of him standing here. Walking around to the other side and waving back at me through the tank. The inhabitants of this tank are the same as they have always been. Maybe a few new babies of fish that are already in there. This trip though.... Tyler climbed up and sat down on the ledge. He sat there and watched the fish. Actually looking at the fish. And was amazed. He couldn't believe his eyes. LOOK AT THAT FISH!

This giant clam has been here for years. We have seen it every time we have come to the Aquarium. Yesterday was like the very first time Tyler had ever seen it before. He couldn't believe how huge this clam was. I was forced to take a picture of it. The fact that there were two of these massive things in the same tank was simply amazing!

When we went to see the sea turtles Tyler could not believe his eyes yet again. The sea turtles are in a tank with a HUGE school of lookdowns. These lookdowns race around the tank in a circle. Tyler, exasperated says, "It's like a fish highway!". They are in his way of being able to enjoy the turtles. Nevermind the fact that these lookdowns have always been here. They have always raced around the tank in a silvery blur. 

When you come into the aquarium you start at a very rainforest like point. Not just in the exhibit itself but with the way the flow of the place is from there. You begin in the trees. Birds and little monkeys. Even a sloth. Then you work your way down in layers. Three layers down you finally reach the bottom floor of the rainforest. Then you go down yet another floor. Down here you get to see inside the "river" that you've been seeing the surface area of during your rounds the past three levels. Here giant catfish, fresh water turtles, and manatees swim by a giant window. Floor to ceiling, wall to wall. Here my daughter says, "Mom, he sees the manatees every time we come here, and yet every time he always acts like he's never seen them before."

This got me thinking. Look at how exciting, fresh, and new everything is to him? He knows he's been here before. He knows he's seen these things. Yet each visit he sees it with new eyes. He is just as excited and happy to see something for the 100th time as he is to see it for the first time. The whole visit he rushes ahead and then runs back saying "COME ON, COME ON, COME LOOK AT THIS!" He has a wonderment in his eyes. His heart. In his very soul. What a gift I had for Mother's Day.Thank you Tyler! :)

A Tisket, A Tasket, An I.E.P in my Basket!

School isn't even over and I am already thinking about next year. What changes are going to take place? Where will my child struggle? What can I do to make it easier? Will his new teachers be better with him than some past teachers? What kind of modifications should I be thinking about for his I.E.P.? Which brings us to today's blog. These questions are not unique to me. Many parents find themselves in that seat for the first time and don't know what they can ask for. Schools often say "no" or give you an "are you insane" look and it makes the parent retreat in shame. This is a tried and true method for the schools. They know how to get out of things. You just have to let them know you aren't going anywhere.

I have heard many times through the numerous special needs pages I follow where people get told that academically their child is doing just fine and therefore no I.E.P is needed. I want to be the first in line to call B.S.! Academically my son has never struggled. His FIRST round through Kindergarten he not only was academically just fine, he was ahead of the majority. However, if the teacher said something like "Everyone put you're things away we're getting ready to go to music class", Tyler would put his things away and immediately leave and escort himself to the music room. After all, that's what she said to do, right? She was amazed to hear that Tyler had attended Pre-K. She said she would have never guessed that he had EVER been around other children before due to his total lack of awareness of other people's space. She told me that academically Tyler would do just fine going on to first grade, but she had concerns that if his current issues persisted that it would start affecting his ability to do well academically. I held him back.

Tyler has been an Honor Student his entire school career so far. This is while not being able to sit in his seat, not being able to focus on a thing the teacher is saying, and constantly being distracted. I often say, WHAT could this boy do if he could actually sit in his seat?! Tyler's intelligence often gets overlooked by school officials namely because he isn't performing at his full potential. So is Tyler unworthy of an I.E.P because academically he is doing "just fine"? No sir! That child needs himself an I.E.P.

In our support group meeting last night we talked about how there is a difference between the private world and the school world. Ideally, the simple fact that your child has a disability would mean that they get services. This is not how the school words things, therefore they do not have to provide services just because you present documentation saying that your child has X diagnosis. They use the wording "eligible". To be "eligible" you have to have a "diagnosis" that meets certain "criteria" and it has to put your child in a situation that they now have a "need". Which is where children can fall through at. Sure your kid has ADHD but they are on medicine and "seem" just fine in class and academically they are "just fine".

I.E.P's are not just about what grade your kid makes in Social Studies or Science class. School is largely about teaching kids how to be an adult. How to get a job. Support themselves. How to be independent. A prime example from our meeting last night; What good is whatever their grade was in math class going to do them for keeping their job when they still hit anyone who brushes up against them on accident? Learning is much more than just your ABC's and how to write in cursive. It's more than whether or not you manage to get by very well or by the seat of your pants in every class.

Example's of the kinds of things available: Your child can be removed from class for large tests to be tested in a room alone or with only a couple children. Your child can be moved to a remote location in the classroom for smaller quick tests (such as spelling tests/quizzes..). You can prevent certain punishments ie you can block them from ever denying your child recess. You can block them from punishing certain behaviors, ie if your child has a problem with interrupting people when they talk you can make it to where your child's most frequent offence is not something he can get in trouble for. You can have it to where they have to let them wear earplugs if they have sound sensory issues.

You can also receive services. Your child can get socialization training. They can be taught how to use proper levels of volume when talking in different situations. They can receive help with learning proper hygiene. How to properly deal with emotions.

What your child can get out of an I.E.P. is so much  more than just getting them to where they are doing "just fine" academically. I cannot stress enough to you, that where there is a will there is a way. If your child has a need no one will help them unless you make them. Or at least you can't expect them to. Maybe they will, but maybe they won't. You are your child's advocate. And what they deny you.....do on your own. They shoot you down on the earplugs? Send your kid to school with earplugs in their pocket.

Circle Circle Dot Dot, now I have my Autism shot!

A couple of days ago the pages were alive and buzzing over whether or not one should get additional vaccines (such as flu shots) and the usual of whether or not vaccines cause Autism. Someone had commented that Autism being a spectrum disorder that there was just as likely a spectrum of causes. I am no doctor. I cannot claim to have any definitive answer as to whether or not Autism is being handed out at your local doctor's office. I do agree with the comment though. Just as what works for one doesn't for others... What caused ones Autism may not cause all Autism.

I do think that people should have more choices in the matter. If you don't want to be vaccinated who are you potentially hurting? If you catch small pox because you chose not to vaccinate are you going to be passing it on to those who chose to not take the risk? No. I also think that considering the kinds of things that go into those vaccinations that one shouldn't over vaccinate themselves. Your body has a natural defense against diseases, let it works it's magic. However that being said, there are those with weakened immune systems due to illness or age. If you are healthy though....it is my personal opinion to let your body take care of itself.

In the matter of my son... He is fully vaccinated. He does not get those little bonus shots such as the flu shot. Even though my ex-husband and I will disagree on virtually everything (most of which is just for the sake of not agreeing) I am sure we would both agree that Tyler was always different. Right from the beginning. We knew he was different. We talked about him being different. I was pretty clueless back in those days. I was no better informed than those that I now struggle against whom their only idea of Autism is what Hollywood has shown them in the movies.

There was no moment of "Oh my gosh, where did my child go?". There was no regression. He always cringed at loud noises (ie thunder). He always worked things out with an amazing quickness and with such a bizarre fashion. I always knew that when it was time to send him to school that the real troubles would begin. I knew they wouldn't approve of who he was. I was right.

My real point behind this post is....We shouldn't be fighting. There is so seldom one right answer. Often I feel like there are two sides (in most things) whom are divided by two separate ideas of what the right answer is, but that those two sides fail to see that maybe they are both wrong and that there is a third unseen possibility. Some people have noted severe regression after vaccinations. Some have seen marked improvement with certain treatments or life style changes. Some of us though, we are just out there living our Autism lives that just....have no known/seen cause. Nothing really changes the situation. So we're just out here doing our best.

Vax? Anti-Vax? High functioning? Low functioning? Does it really matter? Does it change the amount of support the person needs? Does mom more or less need a hug based on what she think caused her situation? Should we confound the situation even more by bringing anger to the plate? Some people need/want answers. I don't feel that need. All that matters to me is enjoying my son. Helping him the best I can. And teaching the world around him that he is not nor will he ever be who they want him to be....and that is perfectly ok. Sure, he has to learn to function with the world at large, but in the mean time, he is just a boy. Just a boy who is lost in a world that makes no sense to him. Regardless of the cause.