Much of my life and the majority of my social media posts revolve around managing the unpredictability of severe, nonverbal autism and its impact on Skyler’s life.
As his full-time parent caregiver and the parent of a neurotypical child as well, I feel it’s important to also share how this extremely challenging diagnosis affects the entire family – particularly the siblings.
Over the years, I’ve frequently inquired and tried to understand my daughter Kendall’s feelings, thoughts and frustrations with Skyler’s outbursts, his inability to connect with her and the significant sacrifices she’s had to make throughout her life because of autism.
But, when asked, her response was almost always the same, “It’s not a big deal Mom.”
So, you can imagine my surprise when she was a guest on my podcast for the ‘Sibling Series’ and I heard her honest feedback about growing up with Skyler for essentially the first time.
Learning that she was envious of her friends who argued and teased back and forth with their siblings, saying “I wish I had experienced that growing up” was heartbreaking.
Admitting that she chose to isolate herself in her bedroom and ‘wait her turn’ until Skyler went to bed because she knows how busy we are, taking care of his every need until that point in the evening – wow, soul crushing.
Recognizing that as an autism sibling, sometimes handling situations well beyond her age, she was inadvertently forced to mature earlier than her peers and, in her words, made her often feel “socially disconnected to her generation.”
Parenting neurotypical children while simultaneously managing the ups and downs and countless unknowns of a special needs child is extremely hard.
It forces us to navigate parenthood quite a bit differently than a ‘normal’ family dynamic.
Although some of Kendall’s honesty and transparency made me a little sad, I also found beauty and relief in her words and takeaways from childhood.
She is not bitter, angry or resentful of autism or her brother. Above all, she chooses to recognize the strengths she gained from growing up in our home – resilience, compassion, independence, and confidence instead of focusing on the unfairness of it all.
I’m extremely proud of both Skyler & Kendall and consider myself lucky to have been chosen as their mom. I have high hopes that someday Skyler will spell to me the same words Kendall spoke to me at the conclusion of our recording… “You have done a great job making me feel important and special Mom. I’ve learned so much from you and appreciate and love you very much.”
Be sure to listen to the podcast episode (Season 5 – #167) … it’s a good one!
