Parents of Children with Disabilities

I know that many parents stand in line for a while… Anticipating the ride of parenthood. Whether it be for 9 months of pregnancy, months of trying for conception, or years of waiting for adoption. Whatever the reason is for the wait, there is enormous anticipation in the waiting for parenthood. In this waiting there are many dreams of what parenthood will look like; holding your baby for the first time, throwing a baseball with your child, watching your kiddo graduate… the images run across all parents minds’ throughout the waiting. Then that sweet little thing is in your life! And at some point… it’s not what you were expecting.

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For some parents, it’s right off the bat with a long NICU stay or later with a diagnosis you have never heard of. Some parents feel it in small ways, while others navigate huge hurtles and barriers in their parenting world that the rest of us don’t have. The reality is that parenting (like so many other things) is never really what we dreamed it would be like.

And with that there can be a lot of grief. For families where they are now parenting a child with a disability it changes everything. It reshapes what your child’s first step may look like, first day of kindergarten, graduation, wedding and even life as an adult. The picture is completely different. It’s not that the new picture is bad! It’s not bad at all, it can just be hard because: let’s face it. Whether we realize it or not, we all have an idea of what we thought this parenting thing would be like. Recognizing the difference is important. Allowing yourself to grieve the difference is incredibly important. The difference between what you THOUGHT it would be and what it TURNED OUT to be.

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Appointments, therapy, practice at home, doctors visit… parenting a kiddo with a disability is a full time job in itself. So how do you help balance the “job” and being Mom/Dad? It can be hard because your child does need so much! Finding time to just enjoy your kiddo is so important! Finding something that makes you happy with your kiddo can do so much for both of you when you’re running around to all the things! This can also create some much needed release in the pleasure hormones in the brain!

Connecting with others is so important, it’s one of my favorite things to talk about. We weren’t meant to do this life thing alone. Remember: the cave people lived together in caves! Finding your people who know what it’s like to parent like you do or who are going through the same things is so important. I used to run support groups in hospitals with parents and so often they would say that it was so wonderful to be with people who understood their fears, hopes and dreams. So I would encourage you to find your people!

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Believing that you are enough is a huge skill. I describe it as finding your limit while also finding your gratitude. That place between “this is what I can hold” and “I’m so thankful to hold all of this!” That may mean saying “no” to the playdate that everyone does because it’s too hard for you to see all of those kids. It may mean saying “yes” to that playdate because it energizes you! It may mean doing that 5k for the cause that means so much to your family or saying yes to setting up for that 5k! It all depends on you and what you need to find that place full and thankful!

Finding your place to grieve is important! Finding your place of balance, connection and gratitude is also helpful. Know that no one’s path looks the same and finding a path that fits you and your family is the key.

Think you might need some help finding balance? We can help.