A few days ago, I saw a post about autism that asked people to understand that autism is not always about happy endings and smiling families. This made me think – I never want anyone who reads my posts to think that autism is all rainbows and unicorns at our house. We have bad days, too.
Our bad days are nothing like they used to be, though. Casey had major behavior issues when she was little. I’m sure most of the problems were sensory related and some were because her routine was changed without warning. Her screams would echo through the house and her jumping up and down actually weakened floor boards.
She would grab at me and try to make me hit her head – a huge signal that she was having a sensory meltdown, but at the time, I didn’t know how deeply effected their senses were. All I knew was that she was screaming and would continue to scream until she was hoarse and keep going. It was exhausting – and isolating to me.
There is no way to describe the feelings of watching your child go through that and not knowing what to do. You can’t comfort them, as your touch may cause more pain. You can’t talk them down because they can’t hear you or process what you are saying. All you can do is hope they don’t hurt themselves or anyone else. And cry.
For some families, this is an everyday occurrence. Their loved one may become violent and attack anyone around them. I have worked with several people like this and it is unimaginable. Try to think about being attacked by someone you love more than anything else in the world. You have to think about the danger your other children may be in – and the people around you, if you dare to go out in public.
I was lucky. Casey may have grabbed at me, but only in the middle of a meltdown. When I did get hurt, it was from struggling to help her – not anything she did to me. Rob never had meltdowns like hers. I prayed she would get control, but despaired that she would. I’ll never know why the regular meltdowns stopped when she hit high school. I suppose it was partly due to simple maturing.
I want the families who are reading this to know that just because I write about good things, it doesn’t mean I don’t know and understand your pain and your struggles. I know what it’s like to sit on the floor and cry. I know what it’s like to think that life will always be screams and tantrums. I understand that you are more tired than you can explain.
I understand your fears and your worries. I know what it’s like to wonder every time you have to go to the store if you will make it through your shopping without screams. I know how exhausting it is to handle therapies and doctor appointments and school appointments and the usual grind of running a home. My best advice – let some of it go.
Who cares if there is dust on the TV? Who cares if the laundry sits in baskets? Do only what you need to take care of yourself and your kids. The rest will take care of itself – I promise you that. I wish I could promise that life will get easier, but I can’t. I don’t know why our family got lucky.
I wish I did know why. Then I could pass that advice along to you. I prayed a lot, I did the best I knew how to do. My kids were (and are!) my life, but I was also selfish enough to carve a little time just for me. It wasn’t easy at all and sometimes, it was only 5 minutes here and there, but you have to be selfish enough to take care of you. I hate feeling selfish, but I had to be at times so we could all be happy.
There are things I will never write about. Mandy, Casey and Rob have worked so hard to become the amazing people they are today. I won’t write anything that may cause any of them to be embarrassed. Some details are too private – I’m sure you can understand this. You have those private details, too. I have close friends and family that helped us through those times.
You need support, too. You need to be able to talk about the devastating details that you live with. Don’t try to keep it all in. Find a support group, if you can, or confide in your best friend. I have a group of “autism” moms that I know I can call anytime. They understand my life, just as I understand theirs.
If violence is part of your life with autism, please talk to your child’s doctor. Talk to his/her school. Ask your county board of developmental disabilities for help. Keep asking for help. I know it isn’t easy to admit your child is violent, but you have to! You need help – your child needs help. Your child doesn’t want to act like this.
I’ve always believed that fresh eyes on a problem can bring new ideas for solutions. You are exhausted and it’s never easy to think straight when you are. Let people help you and your child. Think about the rest of your family. You have to be strong – you have to admit your child needs help.
Maybe there won’t be any easy solutions, but you will have the support you need to care for your child. You will have a group of people who all want the same thing – a happy, healthy life for you, your child and your family.