When you have a child with disabilities
As I sit here and watch my 19-year-old disabled son sleep, I am reflecting on all the Christmas’, birthdays, and other holidays we have celebrated since he joined our family. Holidays are important, a time for family to gather and share those traditions that are part of our unique cultures. At our house, it is about cooking and eating way too much food and playing all kinds of board and card games.
Family gatherings and holidays
I am lucky that we belong to a large family that loves to gather. But it is hard when you have a child with disabilities. If you are reading this, the chances are, you understand. For me, I have to think about:
- Do I have the energy and strength to get him out of bed and into his wheelchair and back again?
- How noisy will it be, and will it be too much for C-Bear?
- He will be in his wheelchair, will there be room for him?
- Will there be room for his ventilator, oxygen tank, and suction machine? Somewhere they won’t get run over by all the kids?
- Will I need to take his feeding pump and meds?
- What will he get out of this outing? Will he just be overwhelmed or will he get any enjoyment?
Sometimes, I just choose to keep him at home, which means I don’t get to hang out with the rest of the family. Sometimes, I make him go over, for at least a few minutes. I don’t want the family to forget him. I want the kids in the family to understand that their cousin is in a wheelchair and that he is still a person.
Holidays and birthdays are hard because no one, including me sometimes, really knows what to give C-Bear for gifts. I have yet to find a company that makes toys for an 18-year-old who is intellectually under 2 years old. “Hey, my 18-year-old son is turning 19 soon. Here is a list of baby toys that he might like” I hate doing that to him. I want to respect his chronological age but have gifts he might actually play with. It’s really hard on us parents!
Some family members take the time to find something on their own to get him, some ask me for ideas, and some don’t even get him anything. And don’t even get me started on his high school graduation!
When I graduated high school, I had all kinds of relatives sending me cards, gift cards, money, and gifts. When Cody graduated high school, 2 people sent him anything. I get it, I do, but for his sake, even though he doesn’t understand, my heart breaks for him. Why should having disabilities automatically degrade those accomplishments that our neurotypical kids are entitled to?
For those looking for gifts, the Facebook group, A Very Special Needs Christmas has given me lots of ideas over the years. If you find good ideas in other places, please leave a link in the comments below.
If a Momma Bear roars in the woods, does anyone hear? The answer is, yes, other Momma Bears hear and roar back in solidarity!
Some websites that have gifts ideas: