questions

[Guest guest]

Subject: Apraxia

Mazel tov to you and your family and most importantly to Adam on marking his

Bar Mitzvah. As a Rabbi, and a mother of a child with Apraxia, I was so

excited to read about Adam's bar mitzvah. What syangouge do you go to? Who

is the rabbi and cantor? How did they teach him? I just read all your posts

of the article you wrote. I can read fluently right to left, but bottom to

top, that was interesting...

My son Coby was born in Jan 2006, with Tetrology of Fallot, a congential

heart defect that has 4 abnormalities, 1 of which was a hold in the heart,

very large one, that was repaired with a gortex patch at 4 months old. He

developed very slowly, and everyone always blamed it on his heart defect and

his early challenges in life. Finally at about 22 months, after almost a

year of saying, you know he is a little slow on speech (and was in early

intervention from about 10 months old, but I could never get them to see he

needed a speech therapist), his cardiologist said, maybe when his heart was

developing, his brain did not develop properly as well. So he went to see a

developmental pediatrician here in Toms River, who diagnosed him on the

Autism Spectrum - 23 months old. At 26 months when I could finally get a

speech evaluation at Children's Specialized hospital, they said, well, maybe

he has apraxia also, but it was a maybe, and not sure. I guess at 2 and a

half, they finally said, yes, it is speech apraxia also. And he was always

very low tone - muscle wise, though that too was blamed on his heart

condition by his doctors. He is klutzy - so am I. I am not sure if they

would put him in motor apraxia at this point. He is now in the preschool

autistic program in the Toms River School district. But really, he is not

autistic. He is so friendly, not afraid of noise, though he didn't like the

Purim Carnival, but was right on the Bimah with me during Megillah reading

on Monday night.

Have you heard of other cases of children with congential heart defects and

apraxia? How about autism spectrum disorders, and the other 2? What did you

mean in part of your article about autistic tendencies and the therapy used?

I would love to talk to you, maybe " pick your brain " a bit about all this,

the connection with the 3 disorders, etc?

I am grateful he is doing better, not like most 3 year olds, but Coby is

Coby. Now I also have an 8 month old, and seeing him do what he is doing,

and listening to his babble, I realize how much Coby did not do, and we did

not pick up on, because we all (doctors also) said, oh, Coby develops at

Coby's rate, it is because of his heart condition. Only my father and

sister, both neurologists, and a neurologist he sawe at 10 months or so in

Brooklyn, kept saying, no it is something else.

Thank you so much for reading. If you have any time, since we are both NJ

people, I would love to talk to you. Where do you live? (if you don't mind

me asking)

My best to you,

(Rabbi) Ellen S. Wolintz-Fields

Toms River, NJ