Dyspraxia Updates

My 9 year old is developmentally delayed. Please read D1’s Story.

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UPDATED 8/25/09

Definition: Childhood Apraxia of Speech- “A motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.” -American Speech Hearing Association

Definition: Developmental Dyspraxia- “A disorder characterized by an impairment in the ability to plan and carry out sensory and motor tasks. Generally, individuals with the disorder appear “out of sync” with their environment. Symptoms vary and may include poor balance and coordination, clumsiness, vision problems, perception difficulties, emotional and behavioral problems, difficulty with reading, writing, and speaking, poor social skills, poor posture, and poor short-term memory. Although individuals with the disorder may be of average or above average intelligence, they may behave immaturely.” from the National Institute of Neurological Disorders & Stroke

UPDATES- MOST CURRENT IS AT THE TOP:
8/25/09
D1 is in his final two weeks of Speech/OT “Social Group”. He’s been going for 45 minutes each Friday. He has been approved to start full OT again, and the OT and SLP are going to change things up once school starts. There is another boy in his group, a year younger, whom he gets along with very well. The SLP wants to have the two of them do a 45-60 min. speech session together each week, in D1’s regular time slot. Then afterward, D1 would have OT, again for an hour. It will have him working much longer than he has been but he NEEDS OT again so bad! He’s excited that he and H get to keep working together. I wish H was a homeschooler, but since we don’t have to move D1’s time for speech that is a bonus anyway. I’m just SO GLAD he gets to have OT again for a while.

7/6/09
A week ago, D1 was re-evaluated for OT. She didn’t tell me the results right off, but we know his sensory profile is indicative, and she both did observation while he had speech therapy, and then did some things with him herself. He began a Speech/OT summer group on Friday, which he REALLY likes. There are three other boys, plus an SLP and an OT. What’s not to like? Lots of sensory input stuff, trampoline, ropes, swing, and the Balavisx Program, which is for cognitive integration. They are also doing a refresher on the Alert Program, which he has already been through but will be helpful too! We’ll see if they can get him in for a regular OT slot. I think they have a waiting list.

4/26/09
D1’s IEP expires today. He will go to Resource today, and speech, and then we are done with the public school system. Yesterday I called the pediatrician about the OT Eval. recommendation again, actually for both of my boys this time. Also his private speech therapist is looking for a second weekly speech slot for him. She told me Monday that once his OT Eval. Rx comes through then she may recommend him for a Speech-OT “social group” that they do once a week with an Occupational Therapist and a Speech Therapist. This may or may not be a good thing… we’ll see. She said it’s for kids who need practice with social settings, as in kids like D1 or autistic kids. They only open it to 4 at a time. Not sure what that would look like. Hmmm. I have more questions before I agree to something like that.
4/8/09
D1 told me yesterday that he thinks he needs OT again, and I tend to agree with him. I am surprised that he is recognizing it, but I guess I shouldn’t be. His need for sensory input is increasing, which is increasing his activity level. He is happiest when he is running, jumping, crawling, throwing, or digging a big hole. Anything that involves heavy work and big muscles. I think I’ll call the pediatrician and get him another OT referral.

10/29/08
I talked with the (private) speech therapist yesterday, about the possibility of increasing D1’s speech to two days a week again. He is simply NOT understanding “WHY” or “HOW” questions. It is to the point where she has to be very creative in how she approaches those tasks, because he just shuts down. He does not understand what she is asking of him. His slow processing is definitely affecting this area of his language, and she agreed that he would benefit from more time. Hopefully that won’t take long to get set up!

10/25/08
D1 is doing well, speech-wise. With his therapist he is working on language goals– particularly answering “WHY” questions, STILL. He is dealing with a little stammering still, although having him “Slow down, take a breath, now say it” helps. His speech therapist thinks he began stammering as a way for his brain to catch up with what his mouth is trying to say. We think he begins to speak when a thought comes to him, even if it is an incomplete thought, and then he has to reboot, so to speak, to get it all out. Hence, the stammering. Apraxia and dyspraxia coupled with a developmental delay does make it more complicated for him.

He is still drooling, although not as much. If I notice it, I just say, “Close your mouth and swallow.” He knows what I am talking about, and why. He still does not notice food or anything else on his face, hands or feet. When he eats he still uses everything he’s got… such as his chin, cheeks, nose, hands, fingers, arms. We are still trying to work on his Alert Program, “How Fast Does Your Engine Run?” He knows that when he starts to slow down he needs to get himself up & running again, usually by jumping for a few minutes on the exercise trampoline we have. When he’s going too fast, he does push ups, crab walks, rearranges, the dining room chairs, etc. Whatever I can have him do that will give some heavy input to his goofy sensory system. I know he probably qualifies for a diagnosis of Sensory Processing Disorder or Sensory Integration Disorder, but I don’t see how pursuing that end will get him more help. They are already telling me he cannot receive ANY sensory-related OT at the school, as they do not work on those types of issues there. They would be smart to begin offering OT for sensory processing, because they would see those kids doing MUCH better in class if they did!! D1 does FANTASTIC after a good OT session. I think the sensory issues will be with us much longer than the language ones.

April 2008:
Currently D1 is doing very well. His speech articulation is almost 100% perfect. He is currently working on language goals: Irregular verbs and irregular nouns (run/ran, man/men, etc) and a lot of thought process things related to language. Retelling something he read or that has been read to him (a’la Charlotte Mason), getting ideas from reading, and other skills which are necessary for writing and reading fluency. Many of his current goals are more related to his developmental delays than dyspraxia, but at this point it all kind of runs together anyway. He was discharged from OT again in January, so for now we are trying to continue using the Alert Program “How Fast Does Your Engine Run?” program parts that the OT taught us, and it does help. He is still somewhat clumsy, as muscle coordination isn’t the best, but he is one of the most active kids I know when it comes to physical activity. He isn’t in organized sports, but we aren’t ruling that out! Anything that has a ball is something he would like to play. He still waits until the very last minute to run to the bathroom, but I think at this point it is more of a busy boy thing than an apraxia issue.

April 2007
Now he is 6. I asked for another OT evaluation a few months ago, and OT was recommended. Presently (04/07) he is receiving an hour a week of OT. This is D1’s THIRD go-round with OT. By God’s amazing grace, his OT is the same one he had (at another facility) when he was in the speech/OT group! This thrills me to no end, because she KNOWS how far he has come!