This originally was a blog detailing Alvin's journey through cranial banding. It's now about his life dealing with Neurofibromatosis, Dyspraxia, and Autism.
Saturday, December 17, 2011
Please help give Alvin a voice!
http://jenn-eric.blogspot.com/2011/12/please-help-give-alvin-voice.html Please read this. It's real, and heartfelt.
Monday, November 28, 2011
Alvin's ETR results
UPDATE: He's also been diagnosed with childhood apraxia of speech. Basically, his brain cannot create the correct paths to turn thoughts in to words.
On November 14, we took Alvin to have an evaluation for the local special needs preschool. Today, we got the results of that evaluation.
In the Vineland Adaptive Behavior Scales, a standard score is a 97, though anything from 91-100 is considered 'average/normal'. Alvins scores are:
Communication: 74 Adaptive level: Moderately low
Daily Living Skills: 71 Adaptive level: Moderately low
Socialization: 63 Adaptive level: Low
Motor: 65 Adaptive level: Low
Overall Composite: 65 Adaptive level: Low
So, as you can see, based on this alone, Alvin is severely behind what is considered 'normal' for his age group. Then, they evaluated his Pre-School Language skills.
Auditory Comprehension: he's equivalent to a 2 year, 8 month old child. So, he's exactly a year behind there. For Expressive Communication, he's the equivalent to a 1 year, 4 month old child. So, he's 2.5 years behind there. These two give him an overall equivalent to that of a 1 year, 11 month old child. So, Alvin is severely behind. He'll be starting his special needs pre-school tommorrow. So our hopes are high that with that, he will start to catch up to his peers, but we do realize that he'll likely never be 'average'.
On November 14, we took Alvin to have an evaluation for the local special needs preschool. Today, we got the results of that evaluation.
In the Vineland Adaptive Behavior Scales, a standard score is a 97, though anything from 91-100 is considered 'average/normal'. Alvins scores are:
Communication: 74 Adaptive level: Moderately low
Daily Living Skills: 71 Adaptive level: Moderately low
Socialization: 63 Adaptive level: Low
Motor: 65 Adaptive level: Low
Overall Composite: 65 Adaptive level: Low
So, as you can see, based on this alone, Alvin is severely behind what is considered 'normal' for his age group. Then, they evaluated his Pre-School Language skills.
Auditory Comprehension: he's equivalent to a 2 year, 8 month old child. So, he's exactly a year behind there. For Expressive Communication, he's the equivalent to a 1 year, 4 month old child. So, he's 2.5 years behind there. These two give him an overall equivalent to that of a 1 year, 11 month old child. So, Alvin is severely behind. He'll be starting his special needs pre-school tommorrow. So our hopes are high that with that, he will start to catch up to his peers, but we do realize that he'll likely never be 'average'.
Monday, February 28, 2011
His genetic results
Wednesday, February 9, 2011
Genetic Test Results
So..I just got off the phone with the geneticist at Boston Childrens. It's affirmative. Alvin DOES have Neurofibromatosis Type I. *big sigh of relief*
Ya'll it's been 2 1/2 years of ups and downs. We think this and we think that. Now we KNOW! There can be no supposition. (No more anonymous assholes being jackasses cause they're bored.) We still have to wait until Alvin hits puberty to find out how bad this NF is going to get, but now we know what to look out for. Now getting him the scans/test etc every year wont be a fight. Why? Because he has a medical condition that requires them.
So what happens now? Well, not much different than what has been really. Once the pedi here on base gets the paperwork from Boston, we'll enroll Alvin in the EFM program. I have no clue what catergory he's going to be labeled and no clue how the EFM program works, but I'll soon find out! I'll post the doctor's notes/more information once we get it in the mail. I just couldnt wait to let everyone know!
Ya'll it's been 2 1/2 years of ups and downs. We think this and we think that. Now we KNOW! There can be no supposition. (No more anonymous assholes being jackasses cause they're bored.) We still have to wait until Alvin hits puberty to find out how bad this NF is going to get, but now we know what to look out for. Now getting him the scans/test etc every year wont be a fight. Why? Because he has a medical condition that requires them.
So what happens now? Well, not much different than what has been really. Once the pedi here on base gets the paperwork from Boston, we'll enroll Alvin in the EFM program. I have no clue what catergory he's going to be labeled and no clue how the EFM program works, but I'll soon find out! I'll post the doctor's notes/more information once we get it in the mail. I just couldnt wait to let everyone know!
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