“I wish I had autism”
That’s what my innocent, almost seven-year-old daughter told me when her sibling, my son, was newly diagnosed. My heart shattered again. What on Earth was I doing with my life?? The guilt was eating me alive, and I wanted so badly to be the mom that my son and his sister needed.
We were in the midst of a whirlwind of finding therapies, reconfiguring the IEP, and trying to find a therapeutic outlet that our son would enjoy while also being beneficial for him. We had decided on swim lessons and he was taking 1:1 private lessons. We live near a lake, and I was terrified he would get out of the house, go towards the lake…..I’m sure you have heard the stories of children with autism and water.
My daughter was upset because her brother got to go to swim lessons and she didn’t. He got to go to speech therapy and occupational therapy to PLAY. For those of you not familiar with these types of therapies, they are play-based therapies. This means that the therapy is done during play to maximize the child’s participation. To my daughter, it looked like my son was having the time of his life every day of the week. My poor girl. She felt so left out. I learned very quickly that siblings of children with disabilities need extra attention as well.
I was heart broken and I didn’t know what to do. I tried my best to explain the situation to her and immediately enrolled her in swim lessons at the rec center, adding to my already overflowing plate of weekly appointments. But she needed it. She needed to know I had heard her. She needed to know I had understood what she was trying to say.
Siblings of children with disabilities need extra support.
I realize now that I need to be very careful with how my son’s disability is presented within our family. I need to be aware of when one or more of his siblings is feeling left out or alone. What I give of myself to one, I have to give to them all.
I know it’s difficult to carve that time out of our already bursting-at-the-seams schedules. Find it where you can. The car wash, the grocery store, buying pet food, even raking the leaves outside. Make it a date. Check in with your kid and see where their heart and head are because it really is so important for them to feel like they have your attention. One of the best ways I have found to make my kids feel special is to volunteer. In the classroom, with a Scout pack, or on a field trip are great ways to find individual time with your kids.
Another awesome way to spend one-on-one time is during the first moments of your child’s day, and the last few minutes before bedtime. Take 3 minutes for each kiddo and focus on just them. Ask them questions about their day. What is in store for them today? What was the best part of their day? Make this a habit and it will grow into a tradition.
For the families of children with disabilities:
I know how hard it can be to find this time. Sibling Tree is an amazing non-profit that provides support for siblings. It may not be one-on-one parent time, but it provides a safe space where siblings can discuss their lives and truly feel heard. My daughter has attended several Sib Shops and comes home tired, happy, and feeling understood.
Our kids are wonderful, spirited, unique, funny individuals. They each put a piece of the puzzle into our family, and I hope that by recognizing that as much as I can, they will know just how special they really are.