CHERAB: Working on behalf of children's speech and language delays and disorders

Subject: my apraxic son

My name is Gerri and I live in Yarmouth Maine. A friend of mine recently sent me an article from the Star Ledger highlighting your son's disability. Until recently, we lived in Chatham, NJ. My son, Brian, who is 11 years old, also has apraxia. He too attended the early intervention program at Children's Specialized Hospital. Our third child, Brian exhibited difficulties in all motor skills and was ultimately diagnosed with pervasive developmental apraxia. We were given doom and gloom prognosis very early on, but we persevered and thrusted Brian into pt, ot, speech and oral motor therapies from age 18 mos. When Brian was four years old, we brought him out to the Mayo Clinic in Minnesota to confirm his diagnosis and get guidance on the best learning environment for Brian to maximize his potential. We were advised to keep him enrolled in the Preschool handicapped program he was already in, but also to expose him to as many "normal, verbal" children as possible. At their recommendation , we enrolled Brian into the nursery school program in our town that our other children had attended. Brain was seen by and evaluated by a Dr. Sheppard out of Columbia University, whose specialty is apraxia and oral motor disabilities.* Brian received intensive oral motor therapy at Overlook Hospital by a therapist whose name is Sharon Winarsky Poe who was marvelous. At the age of 4, Brian was still a non-verbal child and was fitted with a Digixov, which is an augmentative communication device at Children's Specialized Hospital by Paula (her last name escapes me but she is a member of the Speech Department). Brian also attended Camp Chatterbox for children using augmentative communication devices. The device was helpful in allowing Brian to communicate, but he only used it on a limited basis because the therapists at the preschool handicap program in Chatham were not well versed in it and the therapist working with him later in the public school kindergarten program wanted to use only traditional speech techniques. The long and short of it is that Brian is now 11 years old and is definitely a verbal young man. He is in the fifth grade, has an aide in the classroom with him and also gets one on one instruction from a special education teacher in the learning center. He continues to receive speech therapy, ot and adaptive p.e. For a child who was predicted to not talk normally, walk or achieve academically, he is reading for pleasure at a 3rd grade level, raises his hand to read out loud in class, and participates freely in classroom discussions and social discussions. He is a very happy, quite normal, very verbal, boy who not only walks, but runs, jumps, climbs trees, rides a bicycle, hits a baseball and throws a football. Our school here in Maine has a therapist working with him who has a tremendous amount of experience working with a young man who is in highschool who is also apraxic. The school district here also uses the services of a professional out of Boston who is a specialist in apraxia. I wish you all the best with Tanner and the other children whose lives you will touch. I wish there was a support group when Brian was younger because there seemed to be no one who knew enough about apraxia. If I can be of any help to you, please feel free to contact me by e-mail at prentice@Maine.rr.com

Good luck.

*Joan Sheppard will be our speaker for the Cherab Foundation March 2001 meeting.

Help needed in Australia (Please)

I have and still reading the web sight with so much, (I cant' even find a word). Its great, You seem to have so many resources in America. I was wondering do you have any information, on any good services in Sydney Australia. Where I can take my son?...

- I saw the page about Tanner. I even heard him speak. He sounds like he has made so much progress. And your 2 boys are so cute,, Well my sons name is Kamran, he has had OT for fine and gross motor skills, he had speech therapy as well .I stopped it for a while when the twins were born, after a pediatrician said that I'm wasting my time and money running around with therapists, that he's just a little immature and he'll out grow he's problem. I did keep up allot of what the OT & ST ..did with him at home and he has improved a great deal, but its been exhausting for me..

Its only that the preschool have seen no major improvement in him and only now decided something should be done, I knew all along, but people were making me think that I was just a fanatical mother trying to make a mountain out of a molehill so to speak. So now I'm the one pushing every department I know to get the right education for him so that he does have help at school. I know that for Kamran he's way of learning is visual, you show him in picture forms initially and then he will have no problem ..He really can't express him self he just can't put the words together and gives up. He has a terrible pencil grip and I don't ever see him writing. give him a computer though you think he was 10 not 5...years old..Any way I won't go on too much and bore you .Friday is what I'm waiting for, its a 6 hr assessment, AND hopefully I'll get the answers I should have had years ago..Thankyou once again ..Kris

** Keep smiling ** :-) If you can help, please email Kris.