OT Question about Speech Delay and Trunk Weakness...

[mommy22pumpkins]

Hello. I have a 7 year old son who went to disbabled preschool for a speech delay and still receives occupational therapy for some muscle weakness and also to help him write and draw. He is in regular 1ST Grade now and doing really well.

But I feel very guilty now I did not advocate for him enough or educate myself enough aobut his condition. I don't know why he has the trunk weakness/ low muscle tone. His occupational therapist never seemed that concerned about it so I didn't think I should be either.

I took him to a neurologist once to see if he needed any follow up or if there was anything to be concerned about and he gave us a clean bill of health. But I am wondering if I should be worried or should have pushed for physical therapy for him when he was younger. As he can't run as fast as other kids but can do everything other kids his age can- run jump ride a bike etc. He is in swim class and I just enrolled him in soccer at the YMCA and he is doing really well.

Can anyone offer any advice or tell me where to start? I am just feeling very worried all the sudden that there is an underlying cause and I have not done everything I can to help him.

thanks very much,

Danielle (Mom to Owen 7 and Sara 4)

 

[jenjenmouse]

Hi Danielle,
It sounds like you are an amazing mom.
Don't let yourself go into guilt mode about what could have been, just focus on the fact that your son is doing really well. I have a 4 year old w/ Prader-Willi syndrome. It is a rare genetic disorder characterized by many symptoms including low muscle tone and speech delay. It is the number one genetic cause for morbid obesity and can go undiagnosed if a trained doctor doesn't recogize the symptoms. For more info you can check out www.pwsausa.org. My son just started walking in the last 3 weeks and speaks a language only very close family can understand .... I interperat(sp?) everything to everyone. My son goes to PT and OT and ST 2X a week each. I too can still think "What else can I do for him?" He also takes hippotherapy (horseback riding) which helps develop trunk stregnth amoung other things. You might look into that, it is really fun!
I think you are doing a woderful job and I hope you can recognize that . Let me know if you have any other questions or comments.
Jennifer

 

[aka-mad4themouse]

I'm going to move this over to the disABILITIES Community Forum. I think that you'll find the help and support there that you need, OP. My thoughts and prayers go out to you.

 

[Mouse House Mama]

If he is doing good and you said he is on par with kids his age then don't worry. As far as running, well I have never been a fast runner. Never in my life. Not all kids are. I wouldn't stress about it. You are doing the best that you can and from what you posted he seems to be on the right track. Moms always feel that they should/could do more. It sounds like you are doing great.

 

[KirstenB]

Our daughter Zoe was dx'd with hypotonia (low muscle tone) when she was 11 mths old. I think once they rule out conditions like cerebral palsy and muscular dystrophy, sometimes you wind up with hypotonia, and nothing more. Meaning they don't know why it's there, it just is. The good news is, it won't get worse. She also has a speech delay, along with other developmental delays. Her's has always been more pronounced in her trunk as well. No feeding issues, or fine motor skills delays though.

It sounds like you've done everything you can. I'm assuming it was a full-term normal delivery at birth. This was something they asked me to confirm several times, while going through diagnosis. Its great you have him in sports, that will help a lot.

 

[BeckyScott]

I once told our PT that he could keep trying to get DS "up to speed" (literally, as he walks very slowly and has a very awkward run), but at some point in the future he was gonna have to give up because both DH and I are complete dorks and the kid wasn't ever going to be a 'jock', it wasn't genetically possible.

It sounds like your son is further along than mine, as my DS can't ride a bike yet (he has a big tricycle) and he isn't anywhere close to being able to play soccer, and he's 8. I just keep trying to think long-term about it. Once he grows up, what is really necessary?

 

[bookwormde]

It sounds like you have a pretty good handle on the situation, If these are the only characteristics that he has and you are making progress I would not be overly concerned since you have to the best of the science ruled out other progressive causes.

It never hurts to keep reading but in reality if your goal is to find a diagnosis you will probably get one even if it is not the correct one. In reality it is probably just normal genetic variability that just falls in the outer ¼ of the bell curve.

If he starts to demonstrate other characteristics or manifestations, which would be significantly outside the norm, that would be the time to seriously investigate further. Until then just support your child’s needs as you are.

bookwormde

 

[sdarwkcabemanmy]

Don't let yourself go into guilt mode about what could have been, just focus on the fact that your son is doing really well.

Agreed! Stressing over the shoulda/woulda/couldas will get you nowhere. I was like that at first, stressing over guilt because DS stayed with DMIL for the first two years of his life for 40+ hrs a week while DH and I worked. So we didn't realize that he was behind other kids his own age until his pedi suggested we call a local state agency for speech and OT.

He's almost 5 now and he's still behind on some things--mostly physical. He has difficulty with coloring/writing, as well as jumping issues. He CAN jump, but he doesn't particularly care to jump onto/off of things. I think he just doesn't like that split-second feeling of free fall. No biggie..I don't either which is why I will NEVER bungie jump. Ever. DS is also not the fastest runner, but again, I don't stress over that. I'm not a runner either. So it's no biggie.

Just keep pushing him to do his best and maybe even a little beyond it.

 

[mommy22pumpkins]

Just wanted to say thank you all so much. Your insight and kindness means alot to me. I guess I just never realy thought about what the underlying cause might be or maybe I ddidn't want to think about it. I know speech delays and developmental delays run in my side of the family- with the boys anyway. At least there are two others.

I guess I just need to live up to my own standards more and make sure I am taking every action and getting him every service he needs. I have thought about taking him to a psychologist too because he does have anxiety issues as well- as do I! But he does much better with structure and knowing how long things will take, what's going to happen next etc. So I guess I'll just take it day by day and deal with any issues if they arise. I did schedule an appointment with a second neurologist that was recommended to me. If nothing else maybe he can put my mind at ease.

thanks again for listening. I don't know what I'd do without this board. You guys rock

take care and I'll keep you all posted.

Danielle

 

[bookwormde]

The 4 additional factors which you have given in your last post would cause me to modify my advice slightly due to the fact that there is a genetic history of speech delays, developmental delays, that it is primarily in males, and most importantly that there are anxiety issues. If you begin to see significant sensory issues, any social deficits, auditory processing issues or executive function issues (memory, hyper or hypo attention differentials), it would be time for a formal evaluation for neurovariants. If you want to be more educated in understanding and perceptive about the above issues would recommend reading Tony Atwood’s, The complete guide to Aspergers, available on Amazon for about $25.

Since your child is progressing well and you have not mentioned any history of social deficits in your family I would not get overly concerned but monitoring is important, the first red flag would be if his anxiety level continues to increase as social challenges at school get more complex.

bookwormde

 

[sdarwkcabemanmy]

But he does much better with structure and knowing how long things will take, what's going to happen next etc.

That part made me laugh out loud a little bit..I'm the same way. Structure and order and schedules are my thing. I hate having NO structure whatsoever..chaos drives me batty. If I can't plan something down to the minutest detail, I tend to get a little nuts. My husband calls it 'schedule-itis'.