This patient support community is for discussions relating to learning and education, motor and movement, neurological brain injury, premature birth, sensory integration, speech and communication, and vision impairment list groups.
Hi, I am new to this forum and I am hoping someone will have some suggestions for us! I have a 7 year old step daughter who has many, many things going on. I will try and keep this as short as possible........To start, she was diagnosed with childhood apraxia of speech. She rolled over, sat and walked just a little on the late side, but with the exception of speech issues developed normally. Interventions for speech were started around the time she was 2 years old. She has now had 4 years of formal schooling, including head start, pre school and 2 years of kindergarten. We opted to have her repeat Kindergarten because she was just a little behind and her speech was definitely affecting her education. During her repeat year of Kindergarten, other things began to surface. As a "repeater" she was at the bottom of her class and she seemed to be regressing. Concerns were raised by us and the school. We had testing done through the school and even though everyone knew that there were problems, she did not qualify for services except for speech and they did add OT to her IEP. We then opted to see a neurologist to try and help determine things. To say we have seen everybody at this point would be an understatement. We have had an MRI, overnight EEG, metabolic testing and 2 rounds of genetic testing. We have seen doctors in audiology, urology, genetics, behavorial, developmental, diagnostic clinics and opthomology. She has had a full neuro psych eval that puts her in the low average IQ range with her test scores being all over the place, from impaired to superior. The only diagnosis we have gotten out of all of this is, ADHD, maybe a cognitive disorder, possible a processing disorder and a "good luck and let us know what you find out" with no explanation for the regression. The regression we are seeing is across the board, from maturity to behavior, from talking to motor skills. There are so may things she used to be able to do and now can't. Some examples, counting to 100, days of the week, riding a bike, feeding herself, wetting accidents are just the start of what she is having problems with. In recent testing by her speech therapist we discovered and could finally document these loss of skills. In 2011, on a Peabody picture vocab test, her actual age and her test scores were the same (5.9 years), now she is 7 1/2 and scores at 5.6 years. Her speech was at a 3.8 year old level in 2011 and now is at a 2.8 year old level. On current snapshot tests, she is for the most part scoring in the low average range, but these scores do not and will not cross over into daily living. At this point, no one can even find a starting point to help her move forward....what she knows today, she may not know tomorrow, but might know again next week.....maybe. You can do the same lesson 4 days in a row and she will look at it as new everyday and then occasionally might have a day where she can remember yesterdays lesson. I know this is a lot of information and at the same time, probably not enough. If anyone has any thoughts or ideas or questions, please let us know. We don't know where to go next.......but we know that we need a diagnosis to try and help her
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