Eliezer and Meir’s Story
By: the parent of Eliezer and Meir, a 12 and an 11 year old with a 16p11.2 duplication
“Every child is unique. Love them for who they are. Most of all, expect great things from your child, and he will show you that he can. Children want to succeed. Every child can learn, you just have to find the key to reach him.”
What is your child’s relationship like with his/her siblings?
My 12 year old gets teased alot, because his younger siblings like to hear him shriek. My 11 year old plays nicely, as long as he’s in charge. they are a very tight group, and stick together.
What does your family do for fun?
We play outside on the bikes, go to parks and outings. We also have a very large collection of toys and games, and my children love when I sit down and play with them. I try to have a family game night once a week.
Tell us about the biggest hardship your family faces.
As my children are getting older, they are realizing that their brother is different, and are starting to have a hard time dealing with it. My husband is embarrassed to take my older son out in society. We are also having a very hard time dealing with our eleven year old. He is very bright and does very well in school academically, that it’s easy to forget that he has issues. we expect many things from him, and then when he has meltdowns, or is socially and emotionally difficult we wonder why. It is hard to remember that his emotional and behavioral issues are not intentional, and yes, he needs everything explained to him very specifically. He does not get abstract or hints. when talking to him we have to remember to be very literal and clear about what we expect. He also has a hard time controlling his emotions and has lots of meltdowns.
What about your child puts a smile on your face?
My 12 year old is a darling. He greets everyone with a huge smile and tries to be helpful, ( although his help sometimes feels like a toddlers help, meaning it causes more damage then help, makes messes.) My 11 year old has a wonderful sense of humor and makes us laugh with his comments, and when he chooses to be helpful, he is a wonderful help.
What motivates you to participate in research?
I want other people to know what to expect. And also because my eleven year old has an average IQ. and is more or less ok, I expect him to lead a normal life and eventually get married and have kids. At that time, we will hopefully know much more about 16p11.2, and if his children inherit his genetic change, we will know how to deal with it.
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight (16p11.2, 1q21.1, or single gene changes)?
I think every questionnaire we answer, will help better understand this genetic change, and will help future parents of children with this change. We are the pioneers.
What have you learned about your child’s condition from other families?
Not much. I haven’t really gotten to know other families.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Every child is unique. Love them for who they are. Most of all, expect great things from your child, and he will show you that he can. Children want to succeed. Every child can learn, you just have to find the key to reach him.
What is one question you wish researchers could answer about your child’s genetic change?
How much of my child’s behavior can I blame on the 16p11.2 duplication. Is it ok to expect him to behave and control himself despite the difficulties because of his genetic makeup?
Is there anything else you would like to share with other families?
Just enjoy your children, despite their difficulties. Let them grow at their own pace and cherish each accomplishment and progress.