When people ask me “How’s Spencer doing?” my most common response is-
“Well, you know Spencer. He’s a bit of a roller coaster ride.”
For those of you who are care givers for people with developmental disability, you get it.
Let me tell you a little bit about my little roller coaster ride.
- He is hilarious
- He is sweet
- He is kind
- He is compassionate
- He loves to laugh
- He loves, loves, loves preschool shows
- He is always on the go
- He thinks we should go to Target every.single.day.
- He loves animals and farms and specifically chasing chickens at farms
- He has significant developmental disability
- He requires a behavior plan at school to keep himself and others safe
- He goes through periods of time where he is aggressive toward others- staff, students, siblings, cousins, me.
- He has very little language- what they call functional language.
- He has Echolalia- he echos people, videos, books
- He laughs at inappropriate times
- He requires a lot of 1:1 help for basic needs
- He is adored by his family
- He loves to dance (if you count jumping around dancing)
- He loves the song “Feliz Navidad” and insists on listening to it all year long.
- He hurts sometimes and it makes me hurt.
If that’s not a roller coaster ride- what is?
It hurts to be a caregiver
The truth is it just plain hurts to be on the low end of the roller coaster ride.
As I write this, I’m in pain worrying about my child. It hurts to work so hard on a solution only to have it all fall apart. It hurts that I can’t just fix the problem. I have to wait days or weeks to meet with a doctor or teacher or principal and then even longer to see any results of whatever plan we come up with.
What do you do when you are hurting? How do you overcome the loneliness, the isolation, the hurt?
Today, I’ve discovered 4 simple ways to survive. Maybe they can help you too.
#1 Give yourself permission to hurt. It’s OK to be disappointed. Your plan fell apart. He reacted badly to a new program at school or he isn’t responding to that new medication. (or both, plus 3 other things) It is painful to feel back at square one. Grieve a little. Live in the hurt for a little while- you owe it to yourself to acknowledge that it’s hard.
#2 Do something creative. After you have lived in that hurt a bit, take some time out of it. Choose not to think about it. Lose yourself in a writing project or take some pictures of the fall leaves or think about a new way to organize your front closet. I don’t care what you do, but be creative. Take a bit of a “coffee break” from thinking and obsessing about your loved one. I promise you will come back feeling better and have more clarity about the situation.
#3 Accept. I need to accept today that I can do nothing more than I’ve already done for my son to help him through this difficult time. I can’t change things for him no matter how much I would love to take on the burden of his troubles. I have spoken with those who may be able to help and I have prepared what I can prepare. Tomorrow I will do the steps that will help tomorrow. Friday I will attend a meeting. Monday I will talk to a doctor who is, of course, out of the office this week. Today the work is done.
#4 Most of all, remember that the only thing you can count on in a roller coaster ride is the ups and downs. Every time I think “This is it! It’s working! Maybe we are over this part!” or “We will never get over this! When will it ever end?” I have to remind myself that it will probably change. There will be ups and downs, often extreme ups and extreme downs. That roller coaster ride is getting ready to fly up or down and we need to hold on tight.
- When Spencer is aggressive and we are scared to send him to school- it’s not forever- even if it feels like it is.
- When Spencer is calm and happy for days at a time- it’s not forever- even if we hope it could be.
- When Spencer is doing well at school and finding his independence- it’s not forever-he will probably maintain some of those skills, but he will fluctuate.
- When Spencer is sick-it’s not forever-he will eventually get well.
We know the setbacks can and probably will happen and we know we can handle them. We also know they won’t last forever. Tomorrow will bring with it a whole new set of ups and downs.
This is just how it is.
I know that when days like today happen, and they happen often, I need to take an inventory of how I’m doing with these 4 things. Have I used my creative brain? Have I cried or vented or stomped my foot a bit? Have I remembered (and accepted) the pattern that is part of care giving?
This is the nature of Spencer’s world and as his caregiver it has become the nature of my world. And I wouldn’t have it any other way.
After all, I’m just along for the ride.