SPD is Sensory Processing Disorder. It's not something easy to explain, nor does it seem easy to live with. In a nutshell, it's difficult for people with SPD to separate the senses around them. There are actually 7 senses in the body. There are the five we all know (smell, touch, taste, seeing, and hearing) and there are two more which are vestibular and proprioception. Big words.
Vestibular is the sense of balance. We all have receptors in our inner ear that send information about the position of our head in relation to gravity. It gathers input through movement and is seen as arousing (excited) or alerting to the nervous system.
Proprioception is the muscle sense. There are receptors in the muscles and joints that send information to the brain. It gives information about position of the body in relation to other body parts. This system is inaccurate if the person has low or high muscle tone. Wesley has low muscle tone. The input it sends is seen as organizing to the central nervous system.
Tim and I went to a seminar on this subject because I firmly believe Wes has a lot of these issues. It's very prevalent in his eating habits and some play. We learned more then I thought we would. I came away from the workshop feeling like I knew my child more then I had before. It actually makes sense. I knew Wesley had low muscle tone, but I had no idea what that actually meant in relation to his learning. Low muscle tone is not about strength. That boy has strength that you wouldn't believe, but his arms and legs are very floppy and heavy. He is clumsy and falls a lot. It was explained to us that low muscle tone just means it takes more work for Wesley to use his body. It's more effort to lift his arms or move his legs to walk. I had an Ah HA! moment. Because of his low muscle tone, he has a harder time learning because his brain is always more aware of where is body is and always sending messages to locate it rather then giving him a chance to focus on what's in front of him. It's also a reason for his rocking and arm flapping. When he rocks or flaps, it's sending messages to his brain that his arms and body are there and working, giving him an opportunity to focus on something else.
So to make this a lot shorter then it would be, we have to incorporate "heavy work" into our day. Heavy work means making Wes use his muscles and joints to give him the necessary input his brain craves to allow him to "regulate" himself. Regulating himself would mean he's able to concentrate and won't need to stim. These should be done for a few minutes, multiple times a day to keep his regulation at an even pace.
I think with all that I'm learning and all that I know now, I should earn a honorary doctorate!
Fast Forward
It's been nearly 9 years since my last post. Wow, have things changed! I'm not sure why I stopped posting to my blog. It was mos...
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Autism, babyhood and what I know
Hello again.
I'll leave some things I know about autism and the like. I do not know if Wes does or does not have SPD, but what I do know is a tiny bit about what autism is.
I'm sure you know the symptoms of autism and I bet you have already seen that Wes doesn’t show them all. Every child is special, as is every autistic child. I have met many people with autism and they all had their own thing, it is therefore hard to picture how the world for Wesley must be like.
But the thing we all have in common is the thing that causes autism. Autism has nothing to do with poisoning as some think, or bad parents. Neither is it a form of chid schizophrenia (up until the 1970’s they thought autism was a early form of schizophrenia. This turned out not be true, though there is a form of autism that does lie very close to it.) It is mainly caused by the genes. They’re still not sure which genes, as it lays on several and, like most DNA diseases, there is not just one type of error in the DNA. I think it is most likely that one or both parents already carried autism or autism like genes, but not full autism yet. (Don’t worry, no one has the perfect DNA, we are all mutants in a way ;-) ) When the two get a baby, the genes come together, add on top of that that DNA tends to mutate, change slightly, and you could end up with the basic for autism. It is not all in the genes, something beside the genes effects it to, an outside impulse or whatever they call it in English…
You see, sometimes a mum gets a twin and one of the two has autism. The other has a 50 to 70% chance of having it too, but not always, HUH? Then again, the two children are never completely the same, they think about things differently. My estimation would be that when the core of thinking, our soul, the very breath of life starts, we become the person we’ll be till the end, no matter what genes we have. As this is just my own theory, you could just as well forget about it…
But now, what do these genes do that make a person go autistic? If what I said above is true, then surely the genes won’t have such great effect on how the person thinks? Well, that is the case here. Autism has nothing to do with personality. So what’s the point then…?
What causes autism is a mutation in the DNA resulting in a different set of brains. The core of the problem lies with the way the brain processes impulses and the information that comes from them. The brain of a normal person is very good at processing the data gained by the senses and therefore can find the right way to respond. In fact, studies have shown that “normal” people use much less areas of their brain to tackle the same questions as autistic people. Because processing the data is so hard and sometimes impossible, we get autistic behaviour.
Oke, now we’ll leave the brain alone for a sec and look at the result of it all. Things like seeing, hearing, smelling, feeling and all of the world around us, is very confusing. How can we create order if we can’t even keep order inside our heads? Result, chaos. This results in fear, because we can no longer control it. Some roll up to a ball, trying to be ignored. Others try to hide or run away. Sometimes it can even turn into aggression, as there is no longer any control over their own mind and they want it to stop right away. How would you feel if you suddenly aren’t able to keep peace in your mind and there’s no way of stopping it? Sometimes it even passes that level. Then things start getting really nasty and there is no control at all anymore. This results in a panic attack. Screaming, crying, calling, kicking, either falling to the floor or running around mindlessly, etc. Complete blur, what the person is feeling from the inside then comes out with all its might. The nice thing is, it tends to shock people in such a way that instead of backing up and giving that person room to calm down, they get angry, start yelling or demanding stuff. Even the sweet question of stop is to much. I know you’ve seen Wesley having these several times, sometimes it just really is him being angry or wanting something, sometimes it is overload which needs to be handled with the greatest care as it is very shocking.
Because of the problem with data processing, autistic pople sometimes get so focused on something, even if no one else can see, that they can’t get in any other impulses. Whenever Wesley is completely ignoring you, he is just so busy thinking about it all, giving all his thoughts a place in his mind, he just doesn’t hear you. His ears hear you, but the thought of responding or any thought at all about the sound is gone. Then again, sometimes they have the reverse and hear every tiny sound, which to you is so unimportant you don’t even know it’s there. Because of the different way autistics process data, we tend to like the difrent things then you. To us, a spinning object is great to look at for ages, the same movement keeps being interesting for a long time, as can the same sound or object. Investigating things on all possible ways keeps being full of surprises. (Can I put it in my ear? No. Can I put it in my mouth? Yes! Can I lick it? Yes! Feels funny… Can I chew on it? Hey, that’s strange… etc.) It wouldn’t surprise me if this also affects the strength being put into muscles and the balance organ. I don’t know about those two, but I know autistics have trouble learning their own strength sometimes and knowing how to handle it. Also things like pain can be oversensitive or under sensitive.
I’m now really done with typing, but I’ll be glad to answer any questions you have to as far as my knowledge goes. Also, I’ll leave a post of what I know of autism and early childhood/babyhood later on; you might find some reassurance in it. And one last thing before I cut off this huge response, flapping arms, especially when being excited, is a very wel known thing with autism ;-)
Autism, babyhood and what I know, part 2
Oke, so here comes part two, babyhood and the like. I talked to my mum about how my younger brother and I were when we were babies. Both of us have autism (pdd-nos) and ADHD; I suppose you can imagine it can get quite a mess here. I’m sure you already know some stuff about babyhood with autism, but maybe the following can be useful.
Eating
I don’t know much about my eating when I was a baby, but I know my brother was a hard case. Autistic people can have great trouble with eating. Trying out new kinds of food is hard. It tastes weird, it feels weird, it looks weird and it smells weird. For some it is so nasty, that they don’t even want to try new stuff, stick to a solid list of types of food and find all other things dirty. Though, when being offered candy, I have yet to see anyone say he/she doesn’t like it.
Getting my brother to eat was a war itself. Either the food wasn’t good or my brother wanted to sleep, didn’t want to chew and kind of all possible ways to drive my parents mad, and that every day. He does eat fine now, though he does have an eating disorder. The point is, being slow with eating or not chewing correctly and such, can just as well be because of the autism. It doesn’t mean he will have an eating disorder (being very precise as to what you eat and not eat), there’s a good chance it will get better with time, I think.
Talking
Now here’s something nasty. Talking means using language, connecting words to things, communicating with others and using your body in all sorts of ways to produce the right sound. I know little about babyhood with autism and talking, but I do know language tends to develop much slower and later then with ‘normal’ children. Neither my brother nor I had been diagnosed with autism at that time, so we didn’t get special training in it at that time.
As a baby I made all sorts of sounds and I knew a few words, but after the mommy, daddy and the like, my language development ended. Somewhere at the age of two or two and a half my parents participated in research to language development with young children. This meant that once a week a therapist would come to read books with me and stimulate me to talk. For a year she came every week and in that time all that I did was point at the pictures and make al kinds of sounds, just no words. Then, one day, after the research had ended, a year of reading books with me, it came. Suddenly, I just started talking. Within a month I understood the complete structure of sentences, knew piles of words and, according to my mother, couldn’t stop talking. An endless stream of sound, or so she says…
My younger brother had much later language development. I don’t know much about his language development but it was slow. Even at the age of 4, when he started going to school, he still stood in his baby shoes with language. It took a long time for him to learn how to speak. He’s been to a talking therapist (whatever they call it) and such; one of the greatest problems he faced was pronouncing the words correctly.
Learning new languages and pronouncing them correct is very hard for us both. Maybe it’s just us, but I think we’re not the only ones with those problems. As Wesley is learning more and more words, I wouldn’t worry about it too much, it just takes time but most likely, it’ll come.
Things I use to calm down
I have of course found my own ways of handling the world. I can’t tell if these will work for Wesley though. First of all, I’m not Wesley and secondly, I have a special kind of autism, mcdd, and ADHD, which is also an impulse disorder. Things that give of a lot of impulses are very nice. Why? Because we can let go of the things then. For example television. It makes sound and produces changing pictures. This means a constant flow of impulses that have to do with the same thing. So first of all it is easy to completely focus on the TV, locking out other impulses, and it means that we can think about what we see. Simply said, instead of hearing dozens of different sounds, which we all need to think about, we can now lock those out and concentrate on one thing. I therefore love computer games and TV. Though, this may well be because of my ADHD, which simply means you can’t lock out certain impulses ending up in chaos and hyperactivity.
Well, end of another huge post.
Good luck,
Dreamer
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