Finding out that your child has a disability can be an overwhelming experience. While there is no right or wrong way to feel, there is also no guide to the emotions you experience after hearing the news.
Personally, I experienced a whole roller coaster ride of emotions and ended up feeling very lost in the early days of my daughter’s diagnosis. I think many parents (myself included) experience shock, fear, sadness, and even shame when their child is first diagnosed. Other parents, like my daughter’s father, are so shocked that they initially feel disbelief and numbness about the situation until reality finally sets in.
All of these feelings (or others) are more than understandable – you’ve just received a lot of information!
The truth is that there is no right or wrong way to feel when your child is diagnosed. While you can try to suppress and ignore your feelings, you really shouldn’t. Indeed, you need to control and process these emotions so that you can help your child and find ways to thrive in your family’s new normal.
Because you juggle so much in the early days, it’s hard to know what to do with these feelings of guilt, sadness, anger, and envy. According to the Australian Raising Children Network, one of the best things parents can do during this time of diagnosis is to take care of themselves, both physically and mentally.
For starters, make sure you eat, moisturize, and sleep at night. This may mean shifting priorities or even finding creative ways to serve dinner, but you can.
You also need to learn how to accept your feelings and how to give yourself the time and space to fully experience them. Although your current feelings won’t last forever, it is best to meet where you are and be gentle with yourself no matter what you are feeling.
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If possible, open up to loved ones you trust so they can help you cope with anything. These friends or family members can be supportive and have an open ear without judgment. Sometimes a moment to vent is the best medicine for overwhelming emotions. So don’t feel bad!
Additionally, UK-based disability rights group Scope says it is far more beneficial for parents to focus on their child, not the diagnosis. Every child is different, even two children with the same diagnosis. So if you get caught up in comparison, you may feel even worse than before.
Instead, just hang out with your child and do normal, everyday things. For my family, this time means playing board games, reading stories, and snuggling up on the couch to watch my daughter’s favorite TV shows. In the early days of her diagnosis, those moments felt so comforting and reminded me that despite her new diagnosis, she’s still exactly the same child.
And when your child is making progress or reaching a new milestone, celebrate! Just because your child has a unique diagnosis doesn’t mean they still don’t deserve to celebrate small achievements.
Finally, I think my biggest tip for parents of newly diagnosed children is: don’t be afraid to ask for help!
As I was collecting data and preparing for my first appointment with a neurologist, I felt incredibly overwhelmed and insecure. However, by leaning on people with the same illness, I found it a little easier to deal with the time leading up to the appointment. And since my daughter was diagnosed, I’ve used several online support groups on difficult days and that has been really beneficial.
If you feel that your mental health is suffering from the news, you can also seek professional help. There are many therapists and other experts specially trained to help families deal with life changing events and you are a better parent to be able to get help when you need it.
When your child is young, it may also be worth checking your community’s early intervention services to see what support your family may qualify for. These organizations often provide you with the tools you need to help your child. However, they may have connections that can also help you deal with any problems.
Although a disability diagnosis can evoke a lot of emotions in parents, it can almost never be dealt 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 that when you reach the other side, you will get through this and your child will thrive.