I wrote an e-mail to a friend who had asked some questions about Theo and the reasons he is having Occupational Therapy. I realized it was a pretty coherent description of what is going on with him. Since I am really just learning about all of this, it has been difficult for me to explain fully to folks who ask. It is making so much sense to me the more I learn, though, so I'll try to explain it the best way I know how...
Most people have an appropriate level of Sensory Integration. Basically that is the ability for the nervous system to filter out or let in various forms of sensory information (like hot, cold, texture, taste). For example, when you touch mud with your fingers, you can feel that is is cool, wet, slippery, etc. Theo, though has decreased communication between his nervous system and brain. For him, touching mud with his fingers does not give him enough input to feel those things and register the information. He needs more skin contact (nerve stimulation) to gather the same amount of information from the mud. So, to get that, he needs to rub it on his head and put his whole hand or foot in it and put it in his mouth. Because of this, he also has a higher than normal pain threshold (because it takes more stimulation to give him the same input) so safety can be an issue.
Along with that, he also has low muscle tone in his back, neck and shoulders. This isn't muscle strength, but again, nerve communication. When you pick Theo up under his arms, he "collapses at the scapula" (like some kids do when they don't want to be picked up and they go limp and their arms slip through your hands) because his muscles are not communicating appropriately with his brain. He can't communicate the message to those muscles to hold the muscles rigid to help me pick him up. This lack of muscle tone also makes it hard for these kids to sit still in class. The OT had me imagine not getting enough sensory input to know that your butt is touching the chair, so you jump up and down in your seat so your bottom repeatedly slams down on the seat- to get the same amount of input that most people get just by sitting down.
Not enough sensory input is what they feel is responsible for his difficulty swallowing. He often holds food in his mouth (because he likes to feel it there and he needs it to be there longer to register the taste, texture and amount). He also will stuff his mouth so full there is no way he could chew or swallow. This is because he has difficulty in planning and carrying out normal actions in a skillful manner. He knows in his head how to eat, but because he isn't getting the proper input, he will get lost in the steps to successful eating. So, if filling his mouth is what he is doing right now, he fills it until he gets good feedback. He has a hard time seeing ahead (motor planning) to actually chewing it and swallowing it. These are things that you don't usually have to teach a kid it comes naturally between 7 months to a year, but Theo has to basically learn how to eat! The same planning issues cause these kids to have speech delay.
The OT also feels this is responsible for his inability to stay asleep. Soft touch has always really bothered him (covers in bed, a tag in his shirt, rubbing his back softly). She says his body registers any touch that is not stimulating enough as "static". So, his covers touching him or his PJs touching him while he sleeps keeps his senses on edge. Because he is asleep, he can't get away from the annoying touch and he can't seek out firmer touch so his brain can interpret it. When he finally wakes, he is in sensory overload, so he wakes in a complete panic! You know that feeling when the kids are screaming, the tv is on, and someone is talking to you and you feel suddenly crazy? That feeling is because there is sensory information that your brain can't process. This is what is happening to Theo at night! It makes complete sense to me! I have always known there was something more to the waking than just not being able to self-soothe. The panic he is in sometimes is not normal. Apparently this kind of sleep issue is extremely common with this disorder and often plagues them for life. We are going to try a 5 pound weighted blanket. The weight gives them firm touch and can help them sleep.
So, what this means for Theo is doing Occupational Therapy to help him with motor planning (concentrating on speech and swallowing) and learning ways to help him sleep. Longterm, it means we have to make sure we give him enough sensory stimulation and allow him to get the feedback he needs from the environment while making sure he is safe. It means he is always going to be a dirty kid with lots of bruises who puts EVERYTHING in his mouth (and eats dog food and crayons). He may not thrive in public education and teachers may suggest Ritalin. This is not ADHD, though and the Ritalin wouldn't work. The HUGE upside is that Theo is super smart and catches on to the things we teach him really quickly if we teach it with a physical cue. His speech took off when we banged on the table or tapped his belly along with the syllables of the word.
I feel like I am finally starting to understand him! I feel so terrible that I haven't ever known how to help him be happy. The crying when he was a baby... he was probably crying over the miserable tag in his shirt or something else that would have never occurred to me. It is such a relief to learn more about this and to finally feel justified in my sense that there was something that was just not right.