When you bring home that newborn baby it can be so joyful and so overwhelming. People jest about not having an instruction manual for their new bundle of joy, yet they manage. They use their own experience as a human being on the planet, combined with their parent’s techniques from their own upbringing (some good, some bad) and cobble together their own style of parenting. It’s never perfect.
When you have a child with autism, however, all those things you know about taking care of a child no longer seem to fit. You can feel lost, helpless and alone. However, when you get the diagnosis there are people to help. They all come to your aid, the doctors, the many therapists, the teachers. They all know what to do. You sit back watching them “work” with your child. They all mean well. Your family life is a whirlwind of rushing them to therapy, maybe to school, another therapy, and back home to another therapy. You kiss them goodnight and it starts all over the next day.
Samara was in 45 hours of therapy from age three to age six. That’s more than a typical adult’s work week. Where did I, her mother, fit into all that? I watched and I learned, as best I could from a distance. Most therapists would actually prefer you’re not even there for sessions, but I wouldn’t leave her alone.
You lose your parent-child relationship and your role becomes that of the advocate. Advocate and child, does that sound right to you? Your job is not to teach your children anymore, its to make sure they get to all the therapy they need whilst avoiding any collateral damage.
I feel that there is something severely wrong with the way we are approaching “treating” children with autism. Children with autism need one thing, their parents. Parents need one thing, guidance. Guidance on how to navigate a child that’s mind works differently from theirs. They need to be able to resume their typical role as a parent to their child. The child needs to feel safe, loved, and nurtured like any child.
I had a support coordinator from DDD tell me once that we didn’t need any habilitation hours for Samara because “habilitation is for parents who have given up on their children, and you’re clearly capable of teaching her things.” At the time it made me very angry. However maybe, in a way, she was right.
Lately, I find myself in a predicament. Through the RDI program this past year I have learned to connect with Samara in a way I hadn’t been able to before. I AM a good guide and teacher for her. As a homeschooler I have always valued the idea that Samara will be free to learn and grow at her own pace, not by someone’s pre-determined timeline. That she will not be burdened or pressured, or bullied. That she will be allowed to maintain her passion, her spark, to learn.
I find, however, that another bully is still present, THERAPY. I find myself highly resentful of the “help” that we felt so privileged to receive back when she was only 2 and newly diagnosed, feeling helpless to help her. Although we have abandoned ABA therapy she is still going to occupational and speech therapy. Here she is put back on an expected timeline of development. No longer really free to develop at her own pace. She is made to do tasks whether she is developmentally ready or not and it breaks my heart. This is not what I want for her.
However, when you have a child with special needs and someone puts “medically necessary” on anything, you are required to follow through for fear of being accused of not giving your child what they need. The fact that you continue to work on these skills with your child yourself doesn’t seem to count.
In fact, when I had a discussion with an agency recently about RDI, she balked at me about RDI “just being a parent lead program”. As if parents aren’t capable or the best teachers for their children. I think its time we put our kids with ASD back into the most capable hands to help them, or at least for those willing to take on that challenge, with their parents.
I would love to know how you feel about your relationship with your role as a parent with your autistic child. Do you feel therapy is helping or hindering fostering your relationship and connection?