I learned to make my autistic children's lives about them not me
Having special needs children, I must remind myself regularly to not make their life about me. During my pregnancies, I dreamt about things we would do together and the kind of lives they would lead. Then, my daughters were diagnosed as autistic within months of each other — one was 4 and the other 3.
The diagnosis was a relief in some ways. We felt something wasn’t quite right, but ignored our instincts as our pediatrician repeatedly claimed our oldest daughter was just a “drama queen” whenever we mentioned our concerns. Other “well-meaning” parents gave advice constantly — only it never worked. When I explained their “helpful” suggestions weren’t helpful, I was told nothing worked because I screwed up their advice, leading me to believe I was a bad mother. The diagnosis helped because I finally had something to hold up proving I wasn’t a bad mother.
Relief segued into an almost painful numbness as my dreams crashed like broken glass. Now, I dreamt of having a conversation with my daughters or taking them to restaurants without the inevitable meltdown occurring, causing nearby diners to glare until my level of humiliation was sufficiently visible. I wanted to attend a movie without worrying I’d be yelled at because my daughter was making noise or couldn’t sit still. I tried Girl Scouts with my oldest, but we had to abandon that after a few months because she couldn’t participate in anything, and we would both just end the day in tears.
Finally, I realized I was trying to make them live my life — not theirs. I had to let go and listen to what they wanted. When I accepted them for who they are and what they can do, I discovered something beautiful.
Before my oldest daughter could carry on a conversation, Katy Perry’s music was able to reach into her and bring words out. You couldn’t always understand what she was singing, but she always kept in tune. The music opened up doors that helped her find a voice, so she didn’t have to live in silence. My youngest would spend all day outdoors if we let her. She doesn’t talk much, but since we found nature activities for her, the vocabulary and sentences have been increasing exponentially. They needed to find their own worlds where they could be happy and feel connected.
Just as I was made to feel like a constant failure, I inadvertently caused my daughters to feel the same, which contributed to the meltdowns. I wasn’t allowing them to find their own abilities within the parameters of their individual autistic traits. When they could discover what they like and can do at their own pace, they became fireworks bursting with creativity and ingenuity. The “meltdowns” decreased as their needs were finally being met and heard.
I learned meltdowns could be triggered by sensory issues, which created something akin to physical pain. Devolving into yelling, crying or physically lashing out was their only way to communicate the level of pain they were in. I was not a bad mom raising spoiled, tantrum-throwing monsters despite what those who yelled or gave me nasty looks thought. I just didn’t understand the restaurant or theater we were in was hurting my child.
I can converse with my oldest daughter now and I’m getting there with my youngest. I can take them to restaurants because I learned which places meet their comfort level. I discovered my oldest loves Six Flags and is addicted to roller coasters, whereas my youngest can’t handle theme parks, but will happily spend her days at the Fort Worth Zoo regardless of weather.
One of the hardest things about having special needs children is accepting there is a level of shared control: You don’t get to be the only one in charge. You have to listen and let your kids in on decisions at an earlier age than you would with a neurotypical child. You are going to make mistakes — sometimes epic ones — but you can’t let those mistakes define you. Most importantly, you need to let go. You may have dreamed about your child playing soccer, but they just want to sing Katy Perry songs at the top of their lungs while wearing clothes they picked out which are oddly reminiscent of your Punky Brewster childhood. Let them. No amount of channeling a tiger mom will force your kid into being something they aren’t meant to be — and that’s OK because this is your child’s life, not yours.