It’s funny. You would think after 36 years of living with autism, I would be used to the odd little things that make me want to cry. Or, if not cry, that just hits me in the gut. This morning was one of those.
I have been Casey and Rob’s guardian since each of them were 18. I know them. I know they can’t take care of themselves completely or make decisions that are safe. I know this.
This morning, Mandy and I went to court to have her named co-guardian of them. I’m doing my best to make things as easy for her as possible if something should happen to me and having her already their guardian made us both feel better. Since I’ve been their guardian, it wasn’t going to be a big deal.
We had the kindest judge and he made both of us feel comfortable. It was basically just us listening to him talk about their need of a guardian, how I have already been and all of the paperwork we submitted with our petition.
But, as he talked, it hit me again just how much Casey and Rob need me. Need us. Need someone – constantly. Like a kick in the gut. I know I took a deep breath and tried not to show any emotion, but it was hard. They need help. They must have a guardian. I’ve been that for 18 years.
Hearing those words again hurt, though.
It doesn’t really make sense, I know. It’s not like it was something I didn’t already know. Mandy thought maybe it was grief of the life I might have had without autism, but I don’t think so. Sometimes, it gets to me that people who don’t know how amazing they are only see the autism. The disability. Their deficits. Their needs. That’s what bothers me.
Sometimes, it is an awareness that this is my life. Sometimes, it just makes me sad that they have to struggle. Sometimes, I just don’t know why it bothers me.
Today, it did. He was a nice man, doing his job. But I wanted to tell him those papers don’t tell him anything about Casey and Rob. I wanted him to see who he was talking about. I know it’s silly – he was busy – we needed to get home – it was a court proceeding and not the right time or place.
It’s hard when you never know what little thing will kick you in the gut and remind you just how much your child/person with autism needs you. The tears come out of nowhere. Let them happen. Your tears won’t hurt anything and holding in those deep feelings will cause you more stress and anxiety. Just cry and move on.
Because it doesn’t matter what others think about your child. You know the truth. That autism doesn’t define them any more than their hair color does. Autism is just part of them. They are amazing people and I am so lucky to be blessed with so many people with autism in my life.
If you would like to read more about our lives with autism, here is the link to our book – Autism, Apples and Kool Aid. I think you will really enjoy it and I’m sure you will laugh.