My daughter, Bela, who has autism, doesn’t go anywhere without a pair of socks, which is odd because she never wears socks. Rather she carries them around as if they were dolls.
April is Autism Awareness Month, and I’ve been talking about the new numbers from the Centers for Disease Control & Preventionm which show that one in every 68 children is now within the autism spectrum. I’ve also been talking about the importance of an early diagnosis and services and support for autistic children.
While these topics are important, I also want to offer a glimpse into parents’ daily lives. While every autistic child is different, it’s time that we talk about how autism changes parents, siblings, grandparents, uncles, aunts, nephews and nieces, time we recognize that autism is not just about caring for the children, it’s about living in an autistic family.
Autism is a neurological disability, and accepting it is difficult because there are moments when our children look normal and may even act normal. I’ve never had a true affinity for normal, but 10 years into our autism journey I no longer grieve the “normal” little girl that I thought I brought home from the hospital.
Today, I can say that my daughter is wonderful, weird, brilliant, sometimes maddening and, more often, enchanting. And that while navigating autism with her is less frightening than when she was little, as we approach adolescence I’m grateful for all the patience, tolerance and self-control she taught me back in the days when she would spin around, throw herself on the floor or dash out of my grasp.
Our house no longer has visual schedules, there are no longer Post-It notes on everything to remind Bela to “use her words.” Things are no longer locked in bins so that she has to ask for help, and we no longer have to lock the bathroom to prevent her from flushing USB drives down the toilet because “toilets are not trashcans.”
And thankfully I no longer carry headphones, earmuffs or extra outfits in case Bela has an episode.
Getting ready for school, haircuts and dentist visits no longer entail hour-long crying fits. And when Bela cut her beautiful long curly hair in a horrid bob because she wanted to look like Snow White, I had to pretend to be upset, but called my dad to tell him how great it was to have Bela “do something normal like cut her hair” when she wasn’t around to hear me.
These changes, however, didn’t happen overnight and today we deal with different issues. But what’s important is that we are surviving autism; and while we have made accommodations along the way we have not surrendered our lives to autism. In fact, I’m proud to say that autism has not ruined my life, but rather it has enriched it with a child that has made me a better person, a child that has taught me about perspective and diversity, about tolerance and patience.
Autism doesn’t prevent our family from enjoying certain activities rather we just have to give things a little more thought and afford Bela a break or two or three. Parenting is a journey, and while no parent knows where it will lead, sadly for autistic families there are currently more questions than answers, which is why it’s important to reach out to other autistic parents and caregivers.
After all, we are each other’s beacons in the horizon, so who better to provide hope? And what better way to remain social and keep it all in perspective than by sharing our stories and providing support, understanding and maybe some wisdom to others?
I watched Bela pour the cranberry juice and repeated “don’t help” under my breath when her hand slipped and a thump and a splash later she ran away leaving a puddle of juice and two socks on the kitchen floor. “Come back, Bela, everything is OK” I whispered (light years ahead of the screech I would have uttered a few years ago) “It was an accident, let’s clean it up and try again.”
“Oh no, more socks, Mommy!” she screamed from the hall. “Yes, we have more socks, everything is fine. Come on, let’s clean it up. Bela, pour the juice again, and Mommy will get more socks.”
Afterwards, as I walked Bela to her room she squeezed my forearm and asked “Happy? Bela sorry for mess, Mommy wash socks?”
“Yes, Bela” I responded. “Mommy laugh, hee hee hee” she commanded. “No you don’t need to be laughing to be happy, Bela. Mommy special and happy.” Bela responded, “Yes, Bela is special and happy, too.” As she climbed into bed, she said “Bela is different, laugh Mommy laugh, Happy now!” “Bela you don’t have to be laughing to be happy.”
“Joke; Knock-knock” she said. “Who is there?” I answered. “Socks! She giggled and handed me her precious socks. “Happy with more socks? Hee Hee Hee? Socks are wonderful, Mommy.” “Yes,” I laughed, “socks make Mommy happy too.”
And that’s where we are today; Bela and her socks are wonderful and make me very happy.
Raquel Regaldo is an attorney and a member of the Miami-Dade School Board. For more information on parent and grandparent support groups and sibling research, visit www.umcard.org.