I had a lovely conversation with my daughter K1 yesterday. As mothers of autistic children, our conversations often veer into the topic of raising a child with autism.
Now that my beloved K3 is an adult, my responsibilities as an autism mama have shifted and morphed to adult issues. For K1, her tasks are just beginning. Not only dealing with regular toddler issues, but getting little Ben through his therapies, working on his communication and worrying about how to get him ready for school at some level.
As if all that wasn't enough, one of the biggest tasks the mother of an autistic child faces is education. Not just educating herself, which must be done at breakneck speed so that she can learn to advocate for her child, but educating family and friends. The education of people in her life is crucial in two ways. Number one, the entire family needs a support system, people they can talk to that will listen, accept and help them process what is happening. Number two, the attitudes of family and friends will play a crucial role in the years to come, helping the child feel comfortable at family gatherings and other social situations.
I was very fortunate to have my Dad, who when told of K3's diagnosis, was immediately on board with "Okay, what does she need? What do you need? How do I help?" To this day, no matter where he is, he calls K3 at least 3 times per week. While he's always teased her, as he does with his other grandchildren, he also talks to her in basic terms about what she's doing and what her interests are. For all of her 21 years, he remains a strong presence in her life.
K1 is fortunate in that her family immediately knew what she was facing and accepted Ben for who is, whatever he'll be capable of doing. Even though Ben and K3 are different in how autism affects them, K1 was raised with K3 and has an insider's view of what some of Ben's challenges may be. K1's in laws are still coming to terms with the diagnosis. Sadly, it is possible some of them may never completely accept an autism diagnosis.
To illustrate how autism affects toddlers, here's a few examples of Ben and K3 around the age of three:
- Neither Ben nor K3 could tell you their names.
- Neither could follow a series of instructions or even a conversation.
- Neither could tell you what they wanted or needed.
- Neither of them had ever uttered the word "Mama"
- If over stimulated, both would cover their ears and begin rocking
- Both struggled with unexpected change
- Both like watching animals on TV
- Both were late potty trainers
- Both have meltdowns during therapy, it's that uncomfortable
- Neither can tolerate discipline. Even a stern tone can break their heart because they don't understand what you're saying. It's like their main link to this confusing world has just rejected them.
As for differences, K3, was fairly placid, never reached for toys or food, but craved visual stimulation to keep her world moving. She had sensory issues that precluded things like holding crayons, touching food, or enjoying a rocking motion. She was also terrified of bugs.
For Ben, he has more of a balancing act because he self stimulates via dancing, twirling and toe walking, yet he experiences over stimulation with a sense of panic or withdrawl. He may have a meltdown if he doesn't understand what is happening around him and he can't yet verbalize what he wants.
I tell you all this because K1 and I feel it's important for more people to understand autism as the rate of diagnosis rises. That toddler throwing a fit in the grocery store? It may not be a discipline issue, it may be a meltdown from over stimulation that Mom can't fix in the cereal aisle. The screaming child in the park? They may be overcome by sheer terror at the sight of flying insects. That child that can't look at you or respond when you talk to them in Target? They may be more than shy, they may be non verbal. That mother that looks like she wants to cry? She probably does...
I told K1 yesterday that I think it takes some very special attributes to be an autism mama. Not that I had those skills or attributes when I had K3, but I sure as heck developed them. And while I didn't have the internet to help me figure things out, thankfully, I had the amazing therapists at Children's Hospital to guide me. I see K1 developing those same skills and attributes, the patience you didn't know you had, the compassion for your child's struggles and the practicality needed to get through each day with sanity intact. The ability to say screw the laundry, dinner and dishes if you child needs to be held for few hours. I know that's a sign for good things to come for Ben. She's well on her way to being an excellent advocate for little Benny. He's going to need her skills as he faces the challenges of noisy classrooms full of strangers in the years to come.
The one thing we barely touched on yesterday, was the autism dad. It's a difficult role since in the early days they're often at work and rarely see the therapies and other daily challenges mom and child face. Still, the partnership between mom and dad can be a huge asset, both for each other and the autistic child. Speaking only for myself, after the initial shock of diagnosis, TOG and I were solid in all the planning phases for K3. We always knew what we wanted at IEPs, we never wavered publicly (although privately, in the evening we often discussed how to help her and what to ask for) and we provided a sanctuary for K3 when she came home from school stressed out and utterly silent. At times she preferred one or the other of us, but that just means that it took both of us to meet her needs. I think that's what K1 and her hubby are finding as well.
As much as I never expected to have a child with autism, I also never anticipated have a grandchild with autism. But I wouldn't change a thing. I'm going to enjoy learning about Benny just as I enjoyed my little K3. Seeing the world through their eyes is a precious learning experience.