After the Diagnosis: Next Steps for Parents who have Children with Special Needs

After the Diagnosis: Next Steps for Parents who have Children with Special Needs

Cleveland special needs resources

Whether your child has ADHD, autism, learning challenges or developmental delays, receiving any diagnosis can be an emotional time for the whole family, even if you are not surprised by the doctor’s news. The reality that your child could be facing challenges can be overwhelming.

As parents, sometimes we begin to analyze how this happened, what we didn’t see or what we could have done differently.

“I feel like every parent goes through a grief period, no matter what the diagnosis — no one wants to see their child struggle,” says Sarah Rintamaki, executive director of Connecting for Kids, a nonprofit organization that provides education and resources for families who have a child with or without a formal diagnoses.

Many parents begin educating themselves. They want to find information on different ways to help their child, which means trying new therapies and medicines, and taking an active role to see what works best for their child in hopes of short- and long-term successes.

With so much to consider, it sometimes might be difficult to figure out what to do first. Rintamaki provides advice for families with a child who is newly diagnosed.

Take Action
Parents want to make sure their child gets on the right path, whether it’s educational, emotional or another need, as quickly as possible.

“Many parents get frozen with inaction,” Rintamaki says about all the different choices that are presented to families when their child receives a diagnosis. “We always say, step one is based on the diagnosis. Where does the child struggle the most? Start with that first and then start chipping away the layers.”

Medication Decisions
There are several therapies and strategies parents will learn after a diagnosis.

Rintamaki says parents do have a choice of whether to use medications, as some kids’ diagnoses aren’t due to medical issues, but other reasons instead.

She adds to educate yourself on all the options, like behavioral management, etc.

Find the strategies and tools that best work for your child.

Sharing the News
It isn’t easy to tell family members when you still might be dealing with your own emotions. While they can be a great support system, sometimes they can be unintentional critics or provide unsolicited advice.

If you do intend to share with family — which Rintamaki says doesn’t have to be your first step — whether you are telling them about the diagnosis, or therapies and medication, she suggests educating them in different ways, such as using books or podcasts.

“Invite the grandparents in with the counselor (or medical professionals),” she also suggests. “Education makes such a difference.”

How to Explain to Your Child
Your child might or might not understand why they have to go to all these doctor appointments, have to talk to someone about their behavior or are in different types of classes than their siblings or peers. It’s best to be honest with your kids in an age appropriate manner — and make sure they know it’s not shameful.

Rintamaki says to have open conversations with your child about how every brain develops differently and point out that everyone has struggles, even parents.

“You can always find something that every child does great at and something every child needs to work on. Take away that shame and just let them know it’s part of who they are.”

Also, if your kids are taking medicine, she advises that you explain to them how it is supposed to help.

Behavior Shaming
Many parents can feel isolated because of fear of going out in public with a child who may or may not act in a way some people would perceive as appropriate behavior. Whether going out to a restaurant, park or family party, parents who have kids with challenges can get stressed — and sometimes choose not to attend, rather than see their child struggle.

Rintamaki says if there are things you are not doing because of the diagnosis, then prioritize.

“Maybe you can get that same joy from a different activity,” she says. “(It’s OK) that it might be in the best interest to not put them in that situation where you know they will fail. Or, (you could say) ‘I haven’t tried this in awhile, let’s try and we might have a really good time.’

“You have to understand at some point this is your child’s journey — all you can do is put structure in place to encourage and motivate them to learn the skills,” Rintamaki says. “Where they are on the journey to learning those skills, that isn’t a reflection on you as a parent.”

About the author

Angela Gartner has been the editor at Northeast Ohio Parent Magazine since 2014. She has won local and national awards for her features, columns and photography over the years. Previously, her work appeared in publications including The News-Herald, Sun Newspapers and The Chicago Tribune. She grew up in Northeast Ohio and is a mom of two boys. The whole family is busy every weekend with sports and finding new happenings around the region. She is also a board member and past president at the Cleveland Pro Chapter of the Society of Professional Journalists. She loves reading, writing poetry and taking the family's Scottish Terrier on walks.

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