My almost-3-year old twin boy with sensory processing issues....please help

by Monica
(Chicago, IL)

Here's my almost-3-year old's story. Please help or offer any advice that you can. Thank you in advance!!!!!!!!!

*Full-term twin boy, weighing 7 lbs, 5 oz at birth
*One week after birth, he had whole-body spasms. He was evaluated by a neurologist with an overnight video EEG, and it was determined that they were benign monoclonal events (which I was told was normal up until 2 mos when my son's went away).
*He made most appropriate milestones on time, although I don't remember him clapping.
*Didn't like to be held as a baby; and thus he wasn't held very much.
*Didn't crawl. Pretty much went from sitting to walking.
*Cooed, babbled, etc. almost-appropriately as a baby according to schedule
*Tons of ear infections, even still today at almost 3 years old.
*I started noticing that he wasn't progressing with speech even as far back as 9 months old. At 9 months and every subsequent well-check appt. I kept bringing up my concerns about speech to the pediatrician. The doc kept taking the "wait and see" approach.
*I have multiple closely-spaced aged children, so I'm afraid that we missed the boat with other behaviors that we otherwise might have caught if Conor would have been our only child.
*I didn't noticed until he was closer to 2 years that he didn't understand my questions half the time.
*At 18 months, he knew all his ABCs and numbers by heart. He'd read letters off of shirts or off the TV. Grandma thought that he was a little Einstein.
*He went through a rough 6 month period where he banged his head every single night when he was going to bed. As soon as we'd shut the door, he'd run over, throw a tantrum, and start banging the back of his head very hard on the door (in the dark, screaming) until we opened it. As soon as we settled him, put him back in bed, and shut the door, he'd get up and have another head-banging tantrum again. This went on every night for 6+ months for 2-3 hour stretches. I mentioned this several times to the pediatrician at several different visits, and she said that he was ruling our house. She told us to ignore him and let him bang his head. That wasn't fair to him, to his twin who he shared a room with, nor to us.
*I didn't noticed until closer to 2 years that he didn't understand me if I was trying to teach him something longer than just a label. If I was labeling pictures, numbers, etc., he'd pay attention and grasp it just fine. But, if I was trying to teach a concept or tell a story, his attention span was less than 5 seconds.
*Somewhere along the line, I noticed that he wasn't making as much eye contact as my other children did (including his twin brother). I believe he made eye contact appropriately as a baby, but one day (maybe when he was 2) I realized that it wasn't where it should be. When he did briefly look at me, it didn't look like he was really focusing at my eyes. It's improved though even since we started speech & developmental therapy 6 weeks ago.
*Although it's getting better, he tends to isolate himself when his other siblings are playing or are watching a movie.
*He likes to crash into things, including me.
*He likes to fall on the floor on purpose and then he'll laugh.
*He likes to spin around. He'll do that for a good minute at a time.
*His twin brother tries to initiate play with him, and half the time Conor just doesn't understand and doesn't participate.
*He covers his eyes or ears at different times. He covers his ears when someone sings the "Happy Birthday" song. There are other times too. He covers his eyes if something is scary on TV to him (like a witch on the Wizard of Oz) and even when Grandma comes over who he's known since birth.
*He starts acting distressed when I rub lotion on him after a bath
*He acts distressed during teeth brushing and shampooing his hair
*He uses the same couple phrases over at inappropriate times that he picked up from his siblings like,"Not again!"
*If I ask him a question like, "Conor, where is the boat?" Instead of saying an appropriate answer like, "in the water", he'll say something completely inappropriate like "right here".
*He doesn't seem to take enjoyment in holidays & celebrations like my other kids do (e.g, not getting excited when Santa comes or not getting excited when he has an Easter basket full of candy waiting for him). He does share in laughter when the sprinkler is on or if I'm tickling him.
*He shows no fear with some things, as he loves to jump off of furniture and high places, dump toy boxes. He's bolted out of my front door before. We've had to turn our house into a childproof training camp. Drawers are taken out so he won't use them as steps. Our bottom oven drawer had to be removed since he was using that as a trampoline. He climbs onto the sink to turn on the water, he climbs up to get cookies in a high cabinet, and then he will want to jump off from a height taller than him.
*Other things, he shows fear in (even too much)....there's a certain gingerbread man book and he's afraid of the fox in it. Also, he shows fear of certain things that wouldn't normally be scary to another child (they don't come to mind right now)
*Although it's better now, he would constantly run beyond his allowable play area (in our 1-acre yard) or at parks with many warnings and scoldings. Again, I'm not sure if it's "sinking in".
*He'll sit for a short book of his choice, but it's like he's never paying attention. He's too busy trying to turn to the next page instead of listening and looking at the current page
*When he was 1-1/2, he made us read the same story over and over again (green eggs and ham and a thomas the train book)
*He stuffs pancakes, sausage, cookies in his mouth and I'm always afraid he'll choke.
*He won't eat fruits or veggies and gets grossed out by some looks or textures.
*There was also a stage when he'd bang his head on the high chair when he found out you were bringing him something that he didn't like.
*Currently still, I can only understand about half of what he says. He says a couple words, "I thirsty, "Mo cupcake" (pancake), I wan AA (means he wants to watch an ABC video). He seems really fixed on letters still.
*When I ask him a question, half the time he doesn't have an appropriate response). For example, "Conor, what do you want to eat for lunch?" Conor replies, "sit at table".
*The small phrases that he's saying are not prounced correctly, he leaves sounds off and can't imitate sounds very well.
*Just recently when he had an OT eval by a highly regarded local OT, she pointed out how disorganized he was and he can't orient himself relative to space. His legs/feet are very clumsy when he's on his back and they go all different directions. When he runs, he leans his torso weight forward and his arms are behind him.
*I've been told that he's low tone and that he slumps into things. His body becomes the couch when he's sitting because he's so slumped. His face is still chubby but his body is taller. *When he's sitting, he's focused on midline.When the OT pushed him with the lightest force from any given direction, he literally fell over.
*There was a period of time where he'd wake up and tear up his bedroom (take all clothes out of drawers, pull down all the hangers, empty his toy box, etc.). I dreaded having to clean that every single morning for about 6+ months.
*He acts very unruly in public. If I don't contain him, he's climbing on the display shelves in stores, touching breakable items, running away from me, not paying attention to my instructions. At the dr's office, he's turning on and off the lights, opening and closing doors, touching the dr's instruments (otoscopes, etc.), touching her laptop, etc). If I try to contain him in a stroller, then the head banging and tantrum starts.
*He has harmed his twin brother before by getting on top of him and banging his brother's head on the floor or by sitting on his twin brother (who is smaller) and bouncing on him. Those incidents are few and far between, but they seemed to have come out of nowhere. I was changing a diaper and the next thing I know, my other twin is screaming for my help because Conor was hurting him.

EI is seeing him for speech and developmental therapy. They just started 6 weeks ago, but his third birthday is already next month when services will quit. He has been approved for an early education preschool program and hopefully he'll learn structure. We really want for him to attend a regular preschool next year 2012/2013 with his twin brother and then be able to start Kindergarten the following year in our school district (who is already aware of his problems because they're paying for him to go to another early ed. special preschool in another district this coming school year).

if he doesn't talk clearly now, have his thoughts together now, or understand me right now at almost 3 years old, how is he ever going to learn how to read, write, sit in a classroom, etc. by the time he's 5? Will he ever be a "normal" adult? Will he be able to drive? Will he get married, have a successful career, will he ever talk????

The highly-regarded OT who evaluated my son last week says that she does not see him on the "autism spectrum" YET. What does that mean????? She says she sees a little boy who is out of synch. Her clinic uses the Masgutova Method. Should we do some nuero-psych evaluations too? We're in the Chicago area. I was thinking that maybe we should evaluate him for speech processing, cognitive, expressive, and other things that have been mentioned on this website with those certain doctors.

If anyone has any advice, I desperately need it. Thank you so much. Is their any forum that I can join for parents with sensory processing kids? Thanks!