In the autism/special needs community there has been alot of discussion recently over two events.
One is the “the pink letter” from a “pissed off mom” proposing her neighbor euthanize her grandson since he is “such a nuisance” and will “never hold a job”. The other is the sad story of a fellow blogger and tireless advocate, Kelli Stapleton who found herself in such a dark place she saw no other option than to try to take her life and the life of her daughter.
I resisted any public comments of these on Jack’s page for several reasons. In the case of the pink letter, it was because it was EVERYWHERE. It didn’t need to be addressed by me and the person that wrote it was getting enough attention. There didn’t need to be anymore. It was wrong and heartless. We all knew that. Nothing I had to say would have added anything to the mix. In the case of Kelli Stapleton, what COULD I say? None of us will EVER know what happened in that moment. Perhaps she is bipolar and trying out new meds and snapped. There are elements at play that NONE OF US will ever know. She was stressed. She was tired. She was in a dark place. She snapped.
But these two seemingly disparate stories serve to illustrate something so very crucial to us who are caretakers of those with special needs (and I use that term in an extremely broad manner) – SELF CARE.
It doesn’t matter if you are the parent of a child on the spectrum, or with a rare genetic disease, or a severe disability, or the caretaker of an aging parent……. The most important thing you can do for those in your care is:
TAKE CARE OF YOURSELF.
I have strived to make this blog and Jack’s page as positive as possible and still be realistic.
Is living with Jack a joy and a blessing? You bet it is.
Still– there are there days that I am bleary eyed from lack of sleep. There are days that I am beyond tears with frustration. There are days that it takes all I have to get up and do it all over again.
But I have learned to take care of myself in even the smallest ways to keep going and keep my sanity.
My husband and I communicate. We provide each other with time away from the house. We get away as a couple (THREE hours once a week!). But most importantly…….we do little things to keep our sanity and our health.
For me, its small things like the occasional hot bath, Word with Friends, and sewing/crafting.
For Clay, its sitting in the backyard admiring the view, Fantasy Sport Leagues, and reading.
What these small things provide for us is a little food for our soul. Small breaks in the routine that allow us to function properly.
What would I have done if I received that letter?
I would have been pissed.
I would have been distraught.
I would have wanted to seek out the person who wrote it.
But once the initial shock wore off, I would have dismissed it. Shredded it and burned it– gotten the nasty energy out of my home and moved on. I don’t have time to focus on that type of negativity. And it can only serve to be cancerous in my caring for Jack.
What about reaching that dark place?
I would like to think that I am strong enough with enough support to not go there–
Which is the purpose of this blog post.
I urge everyone of you who reads this– special needs parent or not. If you are in the position of caring for someone– ANYONE– remember that you need to take care of YOU, too.
It needn’t be big and complicated. It just needs to BE. My sewing room is set up so that I can get in and get a small amount of wok done at any time. Find those things that feed your soul and do them:
Five minutes of stretching. A few minutes of crossword puzzles. A hot bath. Let go of high expectations for the state of your home. Keep a list of people you know you can trust to call. And if you start feeling like everything is too much?
Let that moment of despair pass.
I thank you for reading this. I thank you for taking the time to consider the ideas I have put forth.
I thank YOU for whatever work you are doing for someone you love.