Child Of The Month

Elana Beth Kaminer
Age 20

Our daughter Elana is now 20 years old--no longer a teenager. But with her child-like spirit it is hard to believe she is that age already.

When Elana was born we never knew anything was wrong. She was this beautiful baby who came into our lives just as our daughter Michele (who is now 25) did. Gradually we noticed delays. She was delayed in crawling, turning over, walking, and speaking – everything really. When she was about 18 months we took her to a neurologist where they did all the testing except the genetic testing. Fast forward a few years and we went to a geneticist who did the chromosome testing and found out about the extra chromosome 15q.

Having Elana changed our lives completely. Parenthood became the opposite of what we expected or even dreamed of. Our focus daily is Elana. Is she having a good day? Is she having a bad day? Did she have an accident in her bed or at school? Can we get respite help for this important event we have to go to or can we get respite so we can go on a much-needed vacation? I lie in bed at night thinking of all these things and actually sometimes do my best thinking at night!

Elana is one of the more behaviorally-challenged children in our group. I always said I can deal with the disability but her behaviors are truly difficult to manage. We have learned how to deal with touchy situations like when people stare at her in stores, etc. I will never stop taking her out in the community because of it. She has as much right to be out in the world as anyone else but I still find it embarrassing and hurtful, and some days it breaks my heart. Elana’s voice is very loud and she is obsessive compulsive in her speech. What people don’t realize is that she could not speak at all until she was six, and years and years of speech therapy have finally allowed her to express herself.

We live in Michigan where thankfully special education goes until age 26, if you don’t get a diploma in high school. Elana got a “Certificate of Completion” and actually attended graduation in a cap and gown. She waited so patiently with all the regular-ed students. When she went up to get her certificate, we cried. She certainly rose to the occasion! That I must say was one of the best accomplishments of her life. We give all the credit to the great program and teachers she had in her four years of high school. They even took the four graduating special needs students on an overnighter to Frankenmuth, Michigan, as their "senior trip".

We don’t have family here in Michigan. We are involved with some organizations that deal with special needs and we consider them our family. They have been quite an influence and helpful to us. They truly love Elana and accept her, with her strengths and weaknesses. She goes to different classes, horse back riding, sleep-away camps and other activities that keep her busy.

Elana is now in a vocational school and does in-house jobs and goes out on job sites. She is limited to where she can go because of her behavior. One of our goals is to get her to different job sites where she can learn more skills. She will be in this program for the next five years.

Who knows what the future will bring but it will always be a challenge. Like the poem “Welcome to Holland”, this is a different journey we all go on.

My favorite poem is:

A Hundred Years From Now
It will not matter what my
Bank account was, the sort
Of house I lived in, or the
Kind of car I drove…
But the world might be different
Because I was important
In the life of a
CHILD.

Child Of The Month Archive

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Special People Profile	Cheyenne Rain Jackson
Special People Profile	Naomi
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Special People Profile	Kevin
Special People Profile	Olivia
Special People Profile	Megan
Special People Profile	Sarah
Special People Profile	Cheyenne D
Special People Profile	Joshua
Special People Profile	Robert
Special People Profile	Frederique
Special People Profile	Julia
Special People Profile	Ryan
Mount Prospect Times Article	Jake
Epilepsy Foundation Newsletter	Will
Exceptional Parent Magazine Story	Joshua D