I am the mother of two special needs children whom I love fiercely and who give me joy. One thing that is rarely discussed about parenting special needs children is the grief that can surprise us at times. There is joy as every developmental milestone is reached and when a special needs child’s achievement of developmental milestones is slow or delayed or missing altogether, there is worry. And then sometimes, as we look ahead, there is grief. Grief that perhaps some milestones will never be reached, such as our child living independently as an adult.
In the case of some neurodevelopmental disorders, such as ADHD and high-functioning autism, the child may do well enough that many people are unaware of the struggles your child faces. This results in expectations without reasonable accommodations for the issue and creates extra stress upon the child. In other words, the disability or challenge is invisible and often unacknowledged by others. In some cases, social development may lag behind peers and even if the child seems okay with it, you as the parent may grieve and worry. And who can you talk to about this who would understand? People who haven’t lived the experience may look at your child and see no problem. Or they respond with, “Your child is healthy, so what are you complaining about?” Alternately, if your special needs child requires more support and care, you may be pitied and others may not see the joys you find in your beloved child. That, too, is isolating and can lead to waves of grief.
The care and effort we expend for our special needs kids’ doesn’t get holidays or vacations, and it’s often unappreciated as to just how much extra is demanded of us. It can be isolating and even though it can bring you joy, it also brings burdens—sorrows, worries, and griefs—that parents of typical kids will never experience. Developmental milestones like getting a driver’s license, social events like prom or invitations to a classmate’s party, and other experiences most people take for granted can be surprising triggers for grief and worry for parents of special needs kids.
I don’t have any simple answers for you parents who are in this boat with me. I will say be kind to yourself. Take some slow, deep breaths and give yourself permission to be an imperfect human parent. If you are doing the best you can, then how can you demand even more from yourself? We aren’t going to get everything perfect and expecting ourselves to do so is not only unreasonable, it’s unhealthy. Understand that some days you will be surprised by a wave of grief that rolls over you, sometimes seemingly out of the blue. Know that in minutes, hours, or days, it will roll out again, just like the tides. And know that it is okay and normal to grieve; it does not mean you love your child less because of it. It simply acknowledges the struggles and the worries and the real potential challenges in your child’s life as a result of the special needs. It is one manifestation of your great love for your child. If you find that your worries and grief are triggered by friend updates on Facebook, bragging about their kids’ amazing accomplishments, feel free to take a Facebook break. That is self-care and taking care of yourself is the best thing you can do to make sure you are able to be the best possible parent to your child.
If you would find it helpful to have a caring, nonjudgmental ear to listen to you, I invite you to call me for an appointment at (816) 226-4678. I am a certified grief counselor and I’m a parent of special needs kids. My experience will be different from yours, but I know we will have much in common, as well.