3 Things I wish I knew when my child was diagnosed

May 27, 2018

If I Need Help asked our friends who have adult children with special needs to share “3 things I wish I knew when my child was first diagnosed that I know now” Todays contribution is from Lisa Szilagyi. Lisa shares the important things she wishes she knew when her child was diagnosed.

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Three Things I wish I knew when my child was diagnosed

Find a community of support:

Usually other parents: It can be very isolating having a child with a disability and often other people – family and friends, won’t understand what you are going through. Find or create a community of friends who you can talk to, who can relate to your situation.


It is so difficult when your child is missing milestones, and developing so slowly. Just remember that everyone continues to learn throughout their lives. Don’t listen to anyone who says “your child will never……….” It is possible that they might not, but always have high expectations. And early intervention is critical! Trust your instincts as a parent and as soon as you have concerns, try to find answers.


This is the area that impacts families the most. Behavioral Intervention is so important, but find the right approach for your child. Everyone is different, what works for another child may not work for your child. You may have to try different approaches. Sudden changes in behavior can mean something – so pay attention and try to find out what is going on: Maybe it’s a physiological reason, maybe something is happening at school, or on the bus, and if your child isn’t verbal, they can only express it through a behavior. Trust your child’s behavior – if they seem to be afraid of something, try to find out what might be going on. Help other people – teachers, friends, family – see that behaviors may be a way of communicating.


Communication is critical. If you child is non-verbal, try to find a communication system as early as possible. So many time behaviors occur because of frustration at not being able to communicate.

IEP’s: Be a strong advocate for your child.

Make everyone in the room say positive things they have observed or know about your child. Know that sometimes the Teachers are also nervous at IEP’s. Try to have a “Pre-IEP” meeting with your child’s teacher, to talk about goals and progress and your child in a more relaxed setting. Always ask about what your child’s strengths are, and use those strengths to build on skills. Also, remember that sometimes having too many goals in one IEP can make it challenging to work on all of the goals. Really think about what are the most important goals. Help your child’s teacher see that

Think about the future: Start now. It goes by fast,

Even though most of the time we are just trying to make it through the day, it is never too early to think about the future. As it turns out, the scariest transition of all is the transition out of school at age 22, and into adult life. Check out day programs, think about vocational opportunities, do a person centered plan to help create a plan for your child.

Lisa Szilagyi
Founder/Director of Programming, The Aurelia Foundation-Creative Steps
Co-Director, Hand in Hand, @ MJCS.org
Special Education Specialist, Level II Credential, Moderate/Severe