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Not sure anymore

post #1 of 6
Thread Starter 

DS was born at home and except for a small period of tachycardia, the delivery went well. We discovered he was posterior tonguetied, had significan oral motor deficiencies, and a high palate when he was failing to gain weight around 5 wks. For that we did OT with a speech pathologist to get him nursing well and he improved, but still was FTT.

 

He has always been a 'soft' baby, but not lagging in gross or fine motor skills. He rolled over, crawled, walked right on time, but he was always weak, and would fall easily, he seemed to not have strength. I never connected the dots but a friend commented after holding him that it was unusual to her that he didn't 'grip' his legs around him when she held him on her hip. Now I realize that is probably another area of hypotonia.

 

We started with a speech pathologist when I saw he was missing speech milestones and she agreed he had the oral motor delays still. We are seeing improvements thanks to her exercises and he can almost drink from a bottle normally (before his top lip would be rolled under with zero tone, now there is some). Cognitively, he's fine. He mumbles and babbles constantly but there are no audible words.

 

What's bothering me most right now is his activity level. He NEVER EVER STOPS MOVING. And I refuse to accept the standard response of "Well, that's a toddler for you..." or "He's a boy, it's normal". No, this kids will climb to the top of the sofa 1000 times in a row if I let him and not tire or take his attention away. He is a danger to himself. He has no fear of heights or danger. We've stopped going to the park because he climbs to the highest slide (20 ft ) and goes down with the elementary kids (and he's been doing this since he could walk).

 

I'm not looking for sympathy, just a place where I can vent and not be told "he's just a XX or blah blah." I'm totally exhausted.

post #2 of 6

My DD is like this. What helped the most was getting her AFO's. She no longer had to sensory seek as much with themon. They give her enough priopreceptional info that she doesnt need to climb.

post #3 of 6
Quote:
Originally Posted by beenmum View Post

My DD is like this. What helped the most was getting her AFO's. She no longer had to sensory seek as much with themon. They give her enough priopreceptional info that she doesnt need to climb.


Sorry I am a newbie...  What are AFO's?

 

post #4 of 6
Thread Starter 

Yes, please share what AFO's are. We have removed many pieces of furniture from our house, and have rearranged the remaining to keep him from hurting himself. His ECI coach describes him as extremely 'motor driven' but I'm beginning to wonder if there is something more underlying.

 

Right after I posted this thread he fell into the wall so hard he put a huge knot on his head (this is a normal thing) and then a few minutes later threw a tantrum in the kitchen and intentionally banged his head really hard on the tile floor on purpose. I spent half the night wondering if he would make it to adulthood without a serious brain injury. I feel like I cannot protect him.

post #5 of 6

Has he been seen by an occupational therapist? It sounds like he's extremely sensory seeking to me. The Out of Sync Child and Sensational Kids are good reads that might help you see if he warrants further evaluation and they might give you more info on things you can do to get him the sensory input he needs.

post #6 of 6
Thread Starter 
Quote:
Originally Posted by LynnS6 View Post

Has he been seen by an occupational therapist? It sounds like he's extremely sensory seeking to me. The Out of Sync Child and Sensational Kids are good reads that might help you see if he warrants further evaluation and they might give you more info on things you can do to get him the sensory input he needs.



He has only been seen by the general ECI coordinator, right now he's only doing speech therapy but I'll ask the coordinator next time I speak to her for an eval for OT.

 

I am going to check out those books. He does sound like he might benefit from sensory therapy. I definetly think it's more sensory but see how easily he could be labeled as ADHD down the line.

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