When we first got Eli's diagnosis of Cohen Syndrome, One of my first concerns was if it would affect his lifespan or not. Its so rare that I couldn't find much online during all my searching. I was anxious...I wanted to connect badly with anyone who had an older child with the same syndrome. I needed to see that everything was going to be okay for Eli down the road. Jan was one of the first parents I got to connect with who had an adult son with Cohen Syndrome. It was so great to be able to see a bit into her daily life with her son, Andy.
She has been kind enough to share a bit of her story below:
She has been kind enough to share a bit of her story below:
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| (Andy is on the right) |
We took Andy into the pediatrician's office when he was a year old because he couldn't sit up by himself. He was a VERY good baby and content to just sit and watch his very active older sister. The doctor measured his head and said he didn't like the size. I wasn't sure what that meant. He made an appointment for us to go to the "Crippled Children's" building for an evaluation.
(Remember this was in early 1977 and they didn't use "Politically Correct" language.)
When we went up there, my husband wouldn't go because he was afraid to find out anything bad or worried it would somehow reflect badly on him. My mother-in-law went with me.
The first doctor asked some routine questions and then they took him away to be seen by different doctors and do blood work.
We anxiously waited for 4 hours!
The original doctor came back and I could tell Andy had been crying a lot! He looked at both of us and said that after all the tests, they determined that Andy was "retarded". That was it, right between the eyes! He asked me what I was thinking right then and I got mad and said he couldn't be "retarded" because he was too cute! He informed me that you don't have to be ugly to be "R". I was prepared for a muscle problem because he couldn't sit up, NOT this!
My husband didn't think the news was so bad but he just made me mad because he wouldn't even go with me to hear about it! We didn't find out about his eyes until he was 5 Y.O. We found out about Cohen's DX when he was in his 20'. The doctor at Casey Eye Institute was doing a genetics test and asked if they could test him. They told us later about the results.
This entire time of almost 40 years has been about MY growth and my ability to accept things, NOT Andy Bob's. He continues to take things in stride, almost never complains about his vision and is a very wonderful, funny and loving guy! I couldn't love him more if I tried!
We get to have a "kid" forever in our home. I still sing to him at bedtime, he loves Christmas, Santa, the Easter Bunny, etc. He has a wonderful faith in God and doesn't have a mean bone in his body. He's been a big blessing to many people.
below is a poem written by Jan for her son:
We get to have a "kid" forever in our home. I still sing to him at bedtime, he loves Christmas, Santa, the Easter Bunny, etc. He has a wonderful faith in God and doesn't have a mean bone in his body. He's been a big blessing to many people.
below is a poem written by Jan for her son:
