Mary is now almost 16 years old, and in that time the world has changed for people with Down Syndrome. We now actually know what genes are on that 21st chromosome, and we also know increasingly more about treating the gene over-expression. In addition, the Internet has brought information on successful therapies and treatments home to parents. No longer do we have to depend on our local medical professionals as the gatekeepers of knowledge. We can dig the info out ourselves, and take it to the docs for help interpreting and implementing it.
So, it is a rude awakening to read experiences like this from Dawn who commented on my Einstein Syndrome article:
I can relate to to what you wrote..”I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents” How true!
Now 2nd… My son has Down syndrome, he was a micro preemie, he has global delays. He is 5 years old and the joy of my life, despite all the hard work raising him alone, this is something a parent does, should do. Parenting a child with Ds isn’t so different.
It’s different in that the parent needs to devote more time and effort and patience to be sure the child receives all the needed services to succeed, but it starts at home. OT, PT, ST, etc. all the T’s…do help, but the bottom line is the parent’s ability to cope with the fact that this beautiful child requires alot. But the rewards are returned tenfold. I’ve been proactive since my son’s birth…whatever it takes I’ll do it. If my son doesn’t read till he’s 10 or even never, that’s ok, at least I know I gave him the *best* chance possible.
I went to a developmental specialist (doctor) at a well known hospital, the words she spoke were shocking and offensive. No sooner than I sat down with my 200 questionare filled out about my son, she said to me…your son has Mental Retardation…
Oh really? I said (like what kind of fool did she take me for?) She said that I needed to face “reality”. She said that I was setting my expectations too high. All in a small room in a matter of minutes. I had made this appt. to seek advice on oral motor stimming my son does. She instead insulted my intelligence, shot down all my efforts by saying “I set my expectation too high”. I asked her what gave her this idea…she couldn’t answer me.
Ugh. Translation: “There is nothing I can do to help you. Please pay the bill on your way out.” Some professionals are at the cutting edge, they are seeing what interventions are effective, and they are helping parents who want more than the status quo.
Others? Well, they are still stuck back in 1950.
So, Dawn, for help with oral-motor stimming, I recommend that you get the videos of Sara Rosenfeld-Johnson. She is one of those cutting edge professionals who actually have high expectations, and are doing something about it. My guess is that your son is craving sensory input to his mouth, which he is satisfying with those sensory stims. SRJ has lots of help for you. To educate yourself you can watch her video workshops. I’ve greatly benefitted from this 12 hour workshop A Three Part Treatment Plan for Oral-Motor Therapy, which teaches you to evaluate your child, and to begin an oral-motor therapy plan at home. If you just want to focus on the mouth stimming, you might look at this video, Organizing the Mouth for Feeding and Speech, a one hour workshop.
Filed under: attitudes, oral motor Tagged: | Down Syndrome
Thankyou Miriam, this is so very helpful! And even more so than all the OT’s my son has had put together.
His oral stimmining involves alot of mouth tapping, teeth grinding, and even at times the letter “e” is hummed. It gets in the way of his new explosion of language that has developed. Can’t thankyou enough for all the helpful resources. I’ll post back with a success story I’m sure.
info on film for oral therapy, is is really easy to do the protocol yourself?
Thanks
Diane M
Sara Rosenfeld-Johnson’s TalkTools are easy for an ordinary parent to use. But they are pretty useless unless they are used properly. I found her training videos to be very helpful, indeed.
Oral-motor therapy is not an easy one-day fix. It involves building, over time, the muscles of the face, mouth, and breathing apparatus. Anyone who has ever done an exercise regimen knows that building muscles takes time and effort. But, if you put in the time, over days, months, years, you end up with strong muscles. That is the result of using SRJ’s Talktools and her methods.
Good speech is worth the effort.
Thank you for this great suggestion. It will be interesting to be my own OT as I have asked this several times and have had no luck. PhD in Parenting course 201.