My Number One Fear As The Parent Of A Child With Special Needs
Growing up as a child, I was afraid of many things. Ghosts were at the top of the list, closely followed by spiders, with cockroaches, especially the ones that fly, next on the list. Frogs were a big no-no and I stayed clear of all reptiles. As I got older, some of these fears subsided and others went away altogether, but I also found that I became fearful of things I never thought of as a child. Becoming an adult who now has to take care of herself came with a lot of expectations and challenges that the younger me never knew existed. I was so excited to be on my own, making my own decisions and living life the way I thought I should, that when that time finally came, I got a bit disappointed. It was hard work! My fear was now rooted around career, finances, marriage, and missing out on certain experiences.
Fast forward to a few years later, I had my first child and became a parent. You would think I’d master the art of putting my fears to rest, right? Wrong!! I was now responsible for taking care of this tiny human and that came with even more responsibilities which opened up another level of fear. But all that didn’t compare to the fears I had after having my second child. A year after our second son was born, we noticed something wasn’t quite right. He was diagnosed with moderate to severe autism at age two which was devastating. This diagnosis rocked us to our core. Before this, I feared things I could more or less control. This was something I had no control over and it terrified me, but not for the reasons you would think.
Parenting any child is one of the most difficult jobs you will do in your entire life. When that child has a disability, that difficult job becomes even harder. Your entire life is spent taking care of them and ensuring that all their needs are being met. You prepare for their future just as you would any child, but there are additional plans that are necessary when that child is disabled. But again, no matter how well you plan, there will be things you can never control, especially when you are no longer around and this is what scares me to death. My biggest fear as the mother of a child with a disability is what will happen to my child after my husband and I are no longer here.
My biggest fear as the mother of a child with a disability is what will happen to my child after my husband and I are no longer here.
No one will ever care for your child the way you do or make sacrifices as you do for your child, not even their siblings. My son will never be able to take care of himself on his own and will always be reliant on someone else to assist him. My husband and I are his sole caregivers and we try our best to teach him to be as independent as possible but sometimes there are limits to what he can do because of his diagnosis. I often think of what his life will be like when we’re gone and I hate to say that I know he will fall through the cracks. I have a supportive family who loves him but they have their own lives to live and their own families to care of. While they would take him in, they will never be able to give him the level of care and support we provide. They will not be as patient and understanding as we are. They don’t know his triggers or understand his quirks as we do. What if they can’t take care of him and put him in a group care facility? What if someone abuses him? What if he wanders off and gets lost? It’s very difficult for any parent to have these thoughts knowing these are possible scenarios your child can encounter.
This is a fear that I will never conquer and what happens then will be out of my control. When I’m gone, that’s it, but until then I try to prepare for his future in the best way I can.
What are your fears for your children? Let us know. Share your biggest fear as the parent of a special needs child at share@aspecialkind.com.