A little about Thomas

I can't sleep tonight because I cannot stop coughing... and I cannot shut my brain off. It has been thinking alot on Thomas today.
In a few weeks we will be moving, as you know. While it's going to be a great new experience, I hope the boys will be able to adjust well. A little while ago, someone mentioned that the primary is already aware that Thomas will be coming. Without going into detail, lets just say that this gives me a little bit of a bad taste in my mouth.
On facebook this week, there is a status update going around that reads:

People need to understand that special needs children don't have an illness, they are not looking for a cure only acceptance. 93% of you probably won't copy and paste this~will you be in the 7% that will and leave it on your status for at least an hour. Special Education week March 22nd to the 26th. Go on copy and paste. Please!!!!!

I am not one to repost such status updates - mostly because I think the 93% and 7% thing is super annoying and incorrect, making the statement as a whole a lot less effective. But I do think that it's important for others to be sensitive to children that are different.

It has taken us a lot of time to find ways to help Thomas. Mostly because we don't know exactly what is "wrong" - making it impossible to get the help that we need - for him, and for us to know what to do for him. One Dr. we talked to said that we didn't need to "LABLE" him (we were talking with him about ADHD) and I agree that I don't want him to be prejudged, but I DO want to have a solution for us and for others on how to handle him and help him. The school he goes to is for early intervention, and it has been a life saver. He still struggles, even there, of course, but we have seen a major improvement.

I just wanted to share with all of you what we do know as of right now, so that maybe you can understand him a little better too.

Symptoms of sensory disorders in children
Sensory disorders may influence one, some, or all of the physical senses. There are 7 categories encompassing our sensory functions. These groups are: Tactile (touch), Auditory (hearing), Visual (sight), Taste, Olfactory (smell), Vestibular (movement and gravity), and Proprioceptive (body awareness, muscles, and joints). Most people experiencing sensory disorders are either hypersensitive (over stimulated) or hypo sensitive (under stimulated).
One defective sense influences several different bodily functions. If one or more senses are disturbed, the sensory messages sent to the brain are incorrect. These messages become disarranged, causing the individual afflicted to perceive their environment in a different way. Reality is misinterpreted, leading to faulty judgments and replies.

I believe Thomas has the Proprioceptive hypo sensitivity
(edited to add that we also know that he has some auditory issues as well - but I am happy that we have seen him grow out of many of them)

Proprioceptive: Trouble with fine motor dexterity (grasping tiny objects, drawing, writing, coloring, pouring, etc.), poor coordination, prefers rough play, often breaking toys and other items, positions body in strange stances, gets pleasure from falling down, dangling by arms, and/or jumping, has trouble using silverware correctly: prefers hands, and has a tendency to support self by clinging to other people, furniture, and other secure items.

Our physical senses are intended to assist us. Deficiencies in these areas encourage a variety of visible behavioral difficulties. Identifying these distinctions early allows the necessary actions to be implemented. Sensory issues may be altered with treatment. The capacity to understand the world would become less complicated for those affected. Realistic encounters within their environments would become more productive and less confusing.

Of course, all children usually undergo a variety of sensory issues while exploring and interacting within their environments. However, if these concerns were to continue or escalate, your child’s ability to learn or function appropriately would be hindered. Sensory disorders have many causes and are incorporated within many other medical diagnoses. Autism, Attention Deficit Hyperactivity Disorder, and Pervasive Developmental Delay are a few examples in which sensory challenges play a significant role. Gaining knowledge of the symptoms sensory issues present would be of great value. Early identification frequently leads to earlier diagnosis and proper treatment for the individual concerned.

and then when I found this checklist I was really sure:

Signs Of Proprioceptive Dysfunction:

1. Sensory Seeking Behaviors:

__ seeks out jumping, bumping, and crashing activities

__ stomps feet when walking

__ kicks his/her feet on floor or chair while sitting at desk/table

__ loves to be tightly wrapped in many or weighted blankets, especially at bedtime

__ loves/seeks out "squishing" activities

__ enjoys bear hugs

__ excessive banging on/with toys and objects

__ loves "roughhousing" and tackling/wrestling games

__ frequently falls on floor intentionally

__ would jump on a trampoline for hours on end

__ grinds his/her teeth throughout the day

__ loves pushing/pulling/dragging objects

__ loves jumping off furniture or from high places

__ frequently hits, bumps or pushes other children

__ chews on pens, straws, shirt sleeves etc.

SO since I wasn't sleeping, I just wanted to share all this with someone "out there" - because I wish that others understood what he is going thru. He is a wonderful sweet fun little boy, and I am scared that people won't see passed his wiggling and inability to pay attention and write him off as a bad kid.


Tam said...

Hi Mindy!
There's plenty of books out there on SID. Jane Ayres is the one who pioneered the theory of SID. Has Thomas ever been to a pediatric neurologist and/or a developmental pediatrician that has a lot of experience with pervasive developmental disorders? Don't be afraid of a label. I know some people don't like them, but I think they have their purposes, too. It's just going to be up to you to tell people what it means in regards to Thomas. Ds's second grade teacher had heard she was getting a student with autism - which she thought meant nonverbal. But she spoke with his first grade teacher and found out otherwise. Now, when he started school and we went through the IEP process, they were going to code him speech and language. We wanted him coded properly - autism - because if he just had a s/l coding it wasn't going to cover the bases, kwim? His issues weren't just speech and language. Just remember - people aren't going to undertand what you don't explain. There ARE a lot of kids out there who's problems are just bad parenting, so it's easy for others to come to that conclusion. Then there's the kids who have problems that have parents who don't do their job either. (I know of one with Down's.) It's up to you to inform not other people to figure it out. Call the school where Thomas will be going and ask to set up a meeting to meet and talk with the people who Thomas will be with. Remember, you are his advocate. :)

Becky said...


I have no great words of wisdom. All I can offer are hugs and prayers. Prayers for strength for you and your family. Prayers for others to have understanding.


Mindy :) said...

I don't think there is anything worse, than when you do try to explain this to someone, and even after that, all they say is that they think he is a normal active boy, and I should stop trying to say that there is something wrong with him.
I am his MOTHER. I think I know my child better than you, who sees him once in a blue moon and knows absolutely nothing about him.
Have you watched him have a complete meltdown because you tried to put his right sock on first instead of his left? Have you watched him struggle to use a pencil or a spoon or fork and only want to eat with his hands? Do you see him when he seems to have no control over his hands and arms, when he is pinching and hitting but doesn't seem to be able to stop what he is doing, like he doesn't even know he has done it until he gets in trouble for it? Have you watched him bounce on the couch for an hour because he needs the stimulation, or to calm himself down in an unsettling situation?
sure you may have played a little with him, and watched him act a little weird at family gatherings, but until you live with him you would never know what I know.

Mindy :) said...

Thanks Tam!
Thomas gets another full year at the school he is going to (his b-day keeps him back from Kindergarten this year)
I am nervous about his sunday school teachers when we move.
Today he had a substitute teacher in our regular church, and she cannot stand him. She is an older "grandma" lady, and she just doesn't deal with him. So we ended up going home early because he wouldn't sit still, and was making noises (also a sensory issue with him). So today we just gave up.

Tam said...

Sometimes people don't see it because their time/exposure is limited. Sometimes when your kid is too normal to not be normal (you kwim LOL) then they just think they are pretty much normal. Which they sort of are. It's even hard as a parent sometimes! It's quite frustrating when your kids is 'normal' in so many ways that YOU get aggravated with them, so when you think about that, you can see why it's harder for others. :)

My ds had an aide in 2nd grade who I don't think should've been one, let alone worked with certain kids.

Read Temple Grandin's book Thinking in Pictures. I know Thomas hasn't been diagnosed as being on the autism spectrum, but the sensory issues are a common factor and besides, it's just interesting. I should look to see if the library has her books.

Oh, and about the new Sunday school. Again, meet with them a couple times before you start. Maybe you can bring Thomas for a couple of short visits before he goes there regularly. Just explain what you can. And maybe you could also buy one of those little trampolines and he can jump on it for a bit before you go. Maybe that would help. :)