Autism and a Wonderful Mother’s Day!

Happy Mother’s Day to all the amazing autism moms – and dads and grandparents and everyone else who loves and supports people with autism and other special needs.

I’ve been an autism mom for 31 years. True, I didn’t actually know it until Casey was four, but I can look at the video from her first birthday party and see the signs as clear as day – if I had only known what I was seeing. Her need for routine – her preference to do her own thing rather then interact with me – her ability to say the alphabet and sing whole sings, but still not be able to say ma-ma. Yep, it’s all there.

But I don’t feel guilty about not seeing the autism earlier. In 1989, autism wasn’t in the news. The movie Rainman was popular, but I still didn’t see autism in Casey. There were no families with autism in our community. Even when she finally got diagnosed, there was only one other little girl near us. Today, I can’t guess how many families have autism in their lives in our area.

So what has being an autism mom taught me?

1. Being a mom is hard at times. It doesn’t matter if autism is involved or not – some days are just hard. And some days with autism are terrible. Sometimes, it’s weeks with autism that are terrible. But – joy always finds its way back to us.
2. It’s a lonely life at times. Many people don’t understand the special challenges we face and that’s okay. I don’t understand the challenges of other moms, either. I don’t understand the constant running of children from sports to dance to music. I don’t understand spending every evening of the week going somewhere for something. I love spending most of my evenings with the kids – walking, crafting, swinging on the porch swing and watching the clouds. But, loneliness is part of any family with special needs – and never feel guilty if you do feel it at times. Sometimes, you just want to go be with other moms and think about anything besides autism (I got to do that the other night – it was amazing!! 🙂 )
3. Routines can be good. Oh yeah – I get tired of them. I get tired of having to stop whatever I’m doing every evening at 7:30 and start helping with bath/shower. I get tired of having to do things a certain way. But – on the other hand, it’s a lot less thinking on my part. I seem to turn on auto-pilot and just go with it. (Course, that also means that if I’m asked something during that time, I may not remember what anyone said to me! 🙂 ) Sometimes, especially when I’m tired, routines are good – no thinking on my part. My body knows what it is supposed to do and we go with it.
4. Little things truly do not matter. I know – it’s easy to say, but when there are so many more important things to worry about, who cares if the coffee table is dusty? If someone complains, hand them a dust rag and tell them to have at it. 🙂 I know I don’t worry or stress about a lot of things other people do. And I worry about things other parents don’t think about very often – are the kids safe? who will be with them when I’m gone? Should I try to change meds? Do they want friends or do they even think about it? Do they know they feel things differently? (They both know they have autism, but I’m not sure whether that matters to them.)
5. On the other hand, some little things matter a LOT! When Rob tries a new food or wears a new shirt. When Casey goes to volunteer somewhere new – and remembers to smile and say Hi and Thank you! When Rob leans on me for a hug. When Casey looks at me with that special sweet smile of hers. When Rob messages someone. When they tease each other like typical siblings do. When they look out for each other when we go places. When Casey checks on Rob constantly when he is sick – or when she thinks he has a “boo-boo” as she calls it. When Rob asks to see Mandy or Cory or Grandpa or Grandma. The smallest step forward is cause for celebration!
6. I am strong. And that’s good and bad. I can stand up for myself and the kids – but it also makes it harder for me to ask for help when I need it. I feel like I’m letting the people who think I’m strong down when I ask for help. You are stronger than you think, too – trust me – I know this without even knowing you. Every day that you get up and start the same routine again, you prove you are strong. When you cry over the screams of your child and you are so tired you can’t think straight and you feel in your heart you just can NOT do this anymore, you are strong. Give yourself a break to cry and take deep breaths. We’ve all been there (and anyone who says they haven’t been that low are lying through their teeth!). If I can do it, you can, too!
7. Autism has brought me so many amazing opportunities that I would have never had. I’ve met so many awesome people who keep me strong when I need it. I’ve gotten to speak to groups of people about autism and our circus. We’ve opened eyes to a new world for many people – and we blasted our way through a school system that really wasn’t prepared for Casey. We made it a little easier for the families that followed us, I hope.
8. Laughing is better than crying. Oh – I’ve cried – more than many people know, but really, laughing is so much better. Most of the things we lived through sound funny, now. (Some don’t – some things will never be funny, but we made it!) The apples and the koolaid – jumping off the roof – hopping through doors – flipping light switches. Some days, I have to laugh or I would go crazy, I’m sure. I can’t change them (and don’t want to!) so I might as well tighten my abs and laugh at how silly they are sometimes.

These are just a few things being a mom have taught me. It also showed me what true, selfless love is. Casey, Mandy, Rob and Cory know that I would do anything for them – they are the most important people in my life. I see their flaws, as they see mine, and we love each other anyway. It’s true acceptance of who I am. I don’t have to be anyone except me with them – silly, serious, stubborn me. And that’s an amazing feeling.

So Happy Mother’s Day to all of you! My wish for each of you is a hug (in whatever form that takes in your home!) a few minutes of peace and maybe a smile from that awesome, amazing, autism child you have. Enjoy your day! You deserve it!