my 2 year old has a disorder that affects his walking spech and eating,all of his motor skills, am i alone?

Sharon - posted on 09/30/2010

My daughter has hypotonia and oral apraxia as well. These are very frustrating conditions! She sustained brain damage when I was pregnant with her, so she also has mild retardation which is unrelated to her physical problems. She didn't walk until she was four, but at 15 she does great. I think the best thing was horseback riding for her trunk stability and muscle tone development. But when she was a baby, she couldn't move at all on her own, just her fingers. So lots and lots of OT/PT/horseback riding has made a huge difference there. Physically, her movements are deliberate, but she can do just about anything she wants to now. The oral apraxia is harder to deal with. I would say that's her biggest frustration. It helps a lot when they try to say a sound if you find a speech therapist who uses visual cuing to help them get their tongue position to start the word. At this point, she is almost 100% intelligible to people who know her, probably 80% to people who don't, and I still do private speech therapy two hours a week after school in addition to what the school provides. Apraxia takes a Lot of speech therapy, so if you can afford it, start now with private. I'm actually a speech pathologist myself, and I still pay someone else because my poor kid was tired of me making her do speech exercises. Daughter's speech therapist found Talk Tools to be a great way of increasing her oral motor strength - see if you can find someone who is familiar with it. http://www.talktools.net/s.nl/it.A/id.93... Once you get a neurologist to certify that this is a neuro-muscular medical condition, often our insurances over the years have covered speech therapy when I persevere. Sometimes they make me appeal a rejection, but usually they pay after the appeal. Good Luck!

Jaime - posted on 09/29/2010

My 6 year old has alot of the same problems. He started speech at age 3 and I called his school district and told them I had a child at risk for learning disabilities. They were great. They got him started in preschool, and started speech, OT, and PT very quickly. He is still in special needs classes, but the progress he has made is awesome. He also drooled excessively, but glad to say that has gotten better (except when he eats hard candy or suckers..lol). Try to call your school district and see what they offer for him. Hope this helps =)

Kim - posted on 09/28/2010

My 15 year old has a different diagnosis, but many of the same problems. She walks, but has poor balance, and cannot hop,run skip or jump. She cannot speak, or chew and is in diapers. Despite this she continues to make progress, slowly but surely. She has OT, PT, speech, music, water and vision therapy. Early intervention is a MUST.

Jean - posted on 09/28/2010

we have done the hippo therapy also and music therapy, also have done www.thelisteningprogram.com I think is the site this helped with some speech we have also done hyperbaric oxygen therapy, massage therapy just to name some lots of therapy. Jean

Jessica - posted on 09/23/2010

My 4 year old has some similar issues. He has a brain abnormality and a suspected spine abnormality that we believe to be the cause of his issues. Hypotonia is a very tricky condition because it can affect many areas of the body, even digestion. My son started early intervention services when he was about10 months and then transferred into the preschool program. Even with all of the therapy his balance is still poor and he stumbles a lot. His feeding issues resulted in a feeding tube, and he still doesn't speak. It's a lot of work, but he has made significant progress. Fight to get as much therapy as possible, and look into hippotherapy (horseback riding), kiddy gym classes, etc. Good luck!