new from hypotonia board- need advice

iVillage Member
Registered: 07-31-2004
new from hypotonia board- need advice
2
Thu, 07-07-2005 - 10:51pm
Hi - my name is Jenny and I am a regular poster on the hypotonia board. I am not sure if I am on the right board, but I need advice about my son Owen (12 months). I know it is really early to know anything, but here are my concerns. Owen had a reough birth, dx w/ hypotonia at 2 weeks old and has been in therapy (PT OT) since 2 months - we have recently added ST as well. All tests, MRI etc. have come back normal. Anyway, Owen has the obvious fine/gross motor delays and was recently evaluated at a 7 month level for speech. He has no words yet, and receptive is "iffy"(although I think he understands more than they give him credit for). My concerns are w/ his sensory issues - Owen has great social interaction w/ our family, but does not like other people - ok eye contact, but freaks if anyone else touches him, does not smile etc. He is great w/ us, seeks out interaction, good imitative skills, good eye contact, loves to be held and cuddled. He also has some repetitive behaviors/ self-stim. behaviors - he frequently shakes his head from side to side (like shaking NO) and hums loudly while doing this. He bangs his body,esp. in his high chair and hums. He will roll cars back and forth on the floor for extended periods of time while humming. He can be distracted from all of these behaviors, but will go right back to them if you don't have anything better to offer him. He has also recently started to hit himself in the face and pull his hair, which I find disturbing. All of his therapists think that his social skills are too strong for there to be a real problem, but I am concerned anyway. These behaviors seem to be on the increase recently. I just don't know if this is related to tone (poor body awareness etc.) - or is it something more. I know he is so young, but should I have him evaluated by someone who specializes in sensory issues? It is so difficult, b/c I feel I am so critical of every behavior, wondering if it is normal or not - I was not like this w/ my other 2 kids. There is definately something different about Owen, he definately has some "unusual" mannerisms. How concerned should I be?
Sorry this is so long - thanks for reading and I appreciate any advice/insight you all may have. TIA
Jenny and Owen
iVillage Member
Registered: 02-24-2004
Fri, 07-08-2005 - 12:14pm

Jenny,

As moms, we have a way of just knowing when something is not right. I think you should follow your instincts and have Owen checked by a developmental ped or a neuropsychologist. I do see some red flags from what you mentioned, and even though he is still young, I would probably pursue it anyway. It couldn't hurt, but it might help.

My son, Nathan, is 6yrs old. He was dx'd as high functioning autistic last year. He always seemed different from his older brother too. The thing with Nathan is that he is always unpredictable. Somedays things would bother him, and other days he seemed ok. So, when he was little, it was too hard to tell, because he would go back and forth with his issues. He is also delayed in his speech, and has expressive and receptive problems.

Social interaction varies too. Nathan does love being around people, at times. He's fine at home, and with people he knows. He's also affectionate and likes to cuddle.

There are varying levels of autism, it's a wide spectrum. And no 2 autistic people are alike. Even sensory issues vary from person to person. I'm not saying that Owen is autistic, by all means.....some children have autistic tendencies, and it may also have something to do with his speech delay. I found it very difficult, trying to dx Nathan on my own, too many things to consider. There is a DSM criteria for autism. You can find this list on the computer. Basically, your child has to fit all of these areas to be considered autistic. The best way, is to have Owen evaluated by doctor.

Hope this helped some. I'm still rather new to this myself, and it's difficult giving out advice since I'm still learning myself!

Michelle

iVillage Member
Registered: 02-25-2005
Fri, 07-08-2005 - 1:52pm

Hi Jenny,

Thanks for visiting the board.

I agree with Michelle - trust your instincts and have Owen evaluated. No matter what the result is, you'll have a better understanding of what you need to focus on, and I think you'll feel better.

My DS is 5, and we didn't have any evaluations until he turned 3, and didn't even think about the spectrum until he was nearly 4.5. He was impulsive, so we thought he'd just outgrow it, he didn't want to socialize in his playgroup, so we thought he was just over active, his speech was delayed, so we let the school district give him speech and they said everything else would catch up. My sister suggested PDD, but since he seemed to relate fine with us (her quick definition), we thought she was wrong. We didn't realize what PDD really was. We had been explaining away every red flag, and now I wish I hadn't waited. Luckily, now we know what to call it (PDD-NOS) and we know what he needs. He's already starting to improve in some areas.

Feel free to come back again with any questions or an update. Good luck!

Maribeth