By: Yvette, Parent of Jack, an 11 year old with a TBR1 genetic change
“I think and hope we can help Simons Searchlight in discovering more about TBR1.”
What is your child’s relationship like with his/her siblings?
Jack has a three years older sister, Eva. Although she loves her brother, living with Jack is difficult for her. That is why Jack stays in a care home one weekend a month and one day a week.
What does your family do for fun?
We love to spend time on our boat. We live near the IJsselmeer and can make lovely trips from there. But unfortunately we can not do a lot of nice things with Jack as he has many behavioral issues. Going on holiday is practically impossible with him.
Tell us about the biggest hardship your family faces.
Jacks behavior is very difficult. Jack demands attention all the time and you cannot correct him. This gives a lot of tension in the house. Also although Jack is 11, his mental age is no more than 3. And because on the outside his handicap is not very clear, people a lot of the time do not understand how hard it is with Jack. We have felt alone a lot in the past years.
What about your child puts a smile on your face?
He is a real dress man! He loves to dress like a gentleman, with suit, tie, etc. He looks so handsome and happy then!
What motivates you to participate in research?
I hope parents with TBR1 children will find more understanding and support early on. The autism diagnoses is not enough to get you the support you need. Therapy does not work on TBR1 children as it can work if your child ‘only’ has autism.
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 and hope we can help Simons Searchlight in discovering more about TBR1.
What have you learned about your child’s condition from other families?
We recognize the behavioral problems of our children. Also the mental disability and autism.
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Make sure you find a nice care home for some weekends or weekdays. Your child will love it and you and your other children and yourself need some quiet time. We only started this two years ago and we should have done this much earlier.
What is one question you wish researchers could answer about your child’s genetic change?
Is there medication that will help with the behavioral issues? The medication we now have, does not help enough.
Is there anything else you would like to share with other families?
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