What To Do After Your Child Gets Diagnosed With a Developmental Disability

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Parents of a child recently diagnosed with autism spectrum disorder or another developmental disability are often stressed and looking for answers.

That’s why we spoke with Lori Podvesker, director of Disability and Education Policy at INCLUDEnyc and mother of a 19-year-old son with developmental disabilities, to learn more about support systems that might help.

TAKE TIME TO PROCESS

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Before you jump into learning the medical terms or deciding on therapies, take care of yourself and your relationship with your child.

“You kind of can’t believe it and you don’t know what to make of it, and I think that’s pretty common for most people,”  Podvesker says.

DON’T THINK TOO FAR AHEAD  

While it’s necessary to plan ahead, don’t look too far into the future. 

“No doctor is going to tell you the prognosis,” says Podvesker. “What do we know now and what will it look like five years from now?” 

There is no one-size-fits-all for autism and other developmental disabilities, so doctors have no way of knowing how your child will progress over the years. 

TALK WITH YOUR FAMILY

Everyone needs to be on the same page to best support your child with disabilities. 

“Dads may not see things the same as moms,” says Podvesker. 

If you have a partner, make sure to give each other time and space to process, and then discuss how each one is feeling, what you’re thinking, and how you’d like to move forward. 

RESEARCH SCHOOLS 

Especially for kids with disabilities, finding a school that supports your child’s needs is key for their growth and development. 

Factors you might consider, Podvesker mentions, are whether you want all your children to go to school together, what kind of school culture you’re looking for, and if the school will support the highest-priority needs of your child, whether that be socialization, speech, or other needs.

It’s also okay not to know what kind of school you want for your child. If this is the case for your family, consider reaching out to a support organization or network, or your friends and family.   

JOIN A SUPPORT GROUP

There are a number of support groups for parents of children with disabilities, and many groups are specific to the disability.

“There’s not only the perspective, but the lived experience when you talk with another family,” says Podvesker.

Connecting with parents will not only provide you with inside knowledge about the dos and don’ts, but will remind you that you are not alone in your journey. 

LEARN THE VOCABULARY 

Although it’s not something you should worry about right away, eventually it will make your process easier if you familiarize yourself with some of the medical jargon. 

“Navigating that stuff while simultaneously learning who your kid is is not easy,” says Podvesker.

If you don’t have a ton of time to learn the terminology, bring a printout of the glossary to your child’s doctor appointments as a cheat sheet.

SEEK OUT FUNDING 

Funding is often a primary concern for families of kids with disabilities, but there are several resources available to you. The New York State Office for People With Developmental Disabilities (OPWDD) offers funding for services for New York residents with disabilities. The book A Parent’s Guide to Autism recommends, if you have healthcare, that you look into how your medical insurance may reimburse you for therapy and treatment.

Remember: You are not alone.

This article first appeared on NewYorkFamily.com.

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