Managing Your Emotions After Your Child's Disability Diagnosis

Finding out that your child has a disability can be an overwhelming experience. Although there’s no right or wrong way to feel, there’s also no manual for the emotions you experience after you hear the news.

Personally, I experienced a whole roller coaster of emotions and ultimately felt very lost during the early days of my daughter’s diagnosis. I think many parents (myself included) experience shock, fear, sadness and even shame when their child first receives a diagnosis. Other parents, like my daughter’s dad, feel so shocked that they initially experience disbelief and numbness to the situation until the reality finally sets in.

All of these feelings (or any others) are more than understandable — you just received a lot of information!

The truth is, there’s no right or wrong way to feel when your child receives a diagnosis. Although you can try to stuff your feelings down and ignore them, you really shouldn’t. In fact, you’ll need to navigate these emotions and process them so you can help your child and find ways to thrive in your family’s new normal.

Because you’re juggling so much in the early days, it’s hard to know what to do with those feelings of guilt, sadness, anger and envy. According to the Raising Children Network of Australia, though, one of the best things parents can do during this time of diagnosis is take care of themselves both physically and mentally.

For starters, make sure that you’re eating, hydrating, and sleeping during the night. This may mean that you need to shift priorities or even find creative ways to serve dinner, but you can do it.

Also, you need to learn how to accept your feelings and give yourself the time and space to fully experience them. Although your current feelings won’t last forever, it’s best to meet yourself where you are and be gentle with yourself no matter what you’re feeling.

If possible, open up to loved ones you trust so that they can help you cope with everything. These friends or family members can support you and provide a listening ear without judgement. Sometimes having a moment to vent is the best medicine out there for overwhelming emotions, so don’t feel bad about it!

Furthermore, the U.K.-based disability rights group Scope says that it’s much more beneficial for parents to focus on their child, not the diagnosis. Every child is different, even two children with the same diagnosis, so getting caught up in comparison may leave you feeling even worse than you did before.

So instead, just spend time with your child doing normal, everyday things. For my family, this quality time includes playing board games, reading stories and snuggling up on the couch to watch my daughter’s favorite television shows. During the early days of her diagnosis, these moments felt so comforting and reminded me that despite her new diagnosis, she is still the exact same child.

And when your child makes progress or hits a new milestone, celebrate it! Just because your child has a unique diagnosis, that doesn’t mean they don’t still deserve to celebrate small successes along the way.

Finally, I think my biggest tip for parents of newly diagnosed children is this: Don’t be afraid to ask for help!

As I collected data and prepared for an initial appointment with a neurologist, I felt incredibly overwhelmed and uncertain. By leaning on people with the same condition, though, I found the time before the appointment a little easier to deal with. And since my daughter’s diagnosis, I’ve utilized several online support groups during difficult days and it’s been really beneficial.

If you feel like your mental health is suffering as a result of the news, it’s OK to seek professional help, too. There are lots of therapists and other experts out there who are specifically trained to help families navigate life-changing events, and you’ll be a better parent for getting help when you need it.

If your child is young, it may also be worth looking into your community’s early intervention services to see what assistance your family may qualify for. These organizations often help provide you with the tools you need to help your child, but they may have connections that can help you deal with everything, too.

Although a disability diagnosis can cause a lot of emotions for parents, it’s almost never something you can’t deal with. Just try to take things one day at a time and be patient with yourself. As someone who has been there, I can promise you’ll get through this and your child will thrive when you reach the other side.