Shifting Expectations: Parenting Autistic Behavior
Kids with Autism are Awesome
My daughter was diagnosed with autism at 3 years old. I knew in that moment the life I planned for her would be forever altered. If you have a child with any disability, you know what I mean. All your goals, hopes, and dreams, for their future fade away. Ideas you had since before they were born are replaced with uncertainty, fear, and doubt. You don’t know what their life is going to be like, how they will function, or what will happen to them once you are gone.
Remove your Expectations, Live Happily
In an instant, you have to learn to eliminate any expectations that you had for their life. You quickly realize expectations only lead to disappointment and become humbled by the smallest amounts of progress in your child’s life. While other kindergartners are learning how to read, you celebrate your child learning how to hold a spoon correctly. While other children are outside playing with their friends, you rejoice that your child can now tolerate the sound of the vacuum cleaner without screaming. While other teenagers are saving their money for prom, you feel blessed that the Tim Tebow Foundation brought a special needs prom to your church. However, the older your child gets the more you realize, someday you won’t be there to take care of them.
When my daughter turned 16 we began to discuss her “transition” into adulthood. We reworked her IEP to reflect more functional goals, such as folding laundry, making her own food, and spending more time in community based settings. My husband and I discussed long term goals for our daughter: Would she live with us or in a supported living home? How would we find the right place for her if it wasn’t with us? What would a life without her even look like? I am going to be transparent with you for a moment. I felt like having my daughter live any place other than my home would mean that I had failed her as a mother. My expectation of her future was that she would continue to live with me. I was her caregiver now and forever. Whether she liked it or not (she didn’t, by the way).
After all, I was the parent and parents are expected to behave certain ways. We are not supposed to want our children to live any place other than our home…forever…until they die. Just writing that now makes me laugh. What an unrealistic expectation to have for any parent/child relationship! Once I got rid of these ridiculous expectations, I began to imagine all of the positive outcomes that were possible for my daughter if she moved into a supported living home. So, with the support of our family and friends, we started the process.
Then, the waiting game came:
The wait list was long. We had no idea when we would get the call that there was a home ready; let alone whether or not it would be the right fit for our daughter. We certainly weren’t going to feel comfortable letting her go anywhere unless it was 100% the best place for her.
She was on the waiting list for almost 2 years when we finally got the call that a new supported living home was opening and that our daughter seemed like a perfect fit. After touring the home and meeting the staff, my husband and I felt confident that this would be a good match for our daughter.
Move in day…FULL of unexpected feelings
When move-in day came I expected to feel sad, but I never expected to feel such joy. My joy came from seeing her joy in having a quiet place of her own. In our home there was a lot of noise and chaos from her siblings. It caused her a lot of stress and frustration. In her new home, it was quiet and peaceful. As a mother of 3, I struggled to find time for all of the 1-on-1 support that she needed on a day to day basis. Since she has moved into her new home she has learned how to make her own bed, do her own laundry, and make herself a sandwich.
Find the Positives Once you Remove Expectations
The daily support she has there is far superior to anything I could ever give her, and that is okay. I did not fail her as a mother, if anything I have succeeded because I recognized my own limitations and put aside my pride to allow others to care for her. It doesn’t have to all fall on my shoulders like I expected, what a relief! For the first time since my daughters diagnosis I feel real hope for her future. I eliminated my expectations for her life and embraced what her life truly is.
She is an adult living with autism and I am her parent. I do not have to be her caregiver if I am unable to, and that is okay.
I pray that no matter where you are on your autism journey, whether you just received the diagnosis or whether you are going through the adult transition phase, that you will find peace in your choices and learn to eliminate your expectations of what life for your child should be. Enjoy the small triumphs, pray through the deep struggles, and laugh… A LOT.
Tiffany Miller, Mom of an Amazing Daughter with Autism & iFamilyKC Team Member