Parenting A Child With Autism Is a Valuable Full-Time Job
I don’t have a job yet my calendar is filled with to-dos, appointments, and tasks required of me. I have a psychology degree hanging on the wall that everyone around me seems to have forgotten collecting dust as I interact with therapists that often think of me as “just another special needs mom.”
I attend all the sessions from all the disciplines, whether physical therapy (PT), occupational therapy (OT), applied behavior analysis (ABA) or speech, all coming with a different approach on how to combat what they see as my child’s deficits and It is up to me to figure out which approach is working.
My days at home are spent with therapists coming in and out and making sure my home is set up for each program to be run. I make sure the bathrooms are accessible, equipped with liquid hand soap and clean towels (because my son is learning how to shower himself).
My washer downstairs is always running filled with extra clothes for when he has an accident because he has had a recent regression in potty training and going back into pull-ups is not an option. When I have an autism free moment, I take that as my chance to make that quick run to the store without fear of a meltdown to stock up on whatever food is being used as a reward during his session and double-checking that all of the iPads are charged and ready to go.
As the therapists work with my child, I am actively offering input or standing quietly in the doorway observing so that after the therapists leave, I can carry through and implement whatever behavior plan they have implemented. When I am not active in therapy, I am in the other room, usually on my laptop or on the phone, researching behavioral interventions that have worked for other children or going round and round with insurance companies about our coverage (or lack thereof) and being placed on excruciatingly long waitlists for therapies my child so desperately needs.
There is a science to what I do. It takes a lot of skill, focus and perseverance to maintain not only the rigorous schedule that special needs parenting brings but also remaining emotionally steadfast as you find yourself strapped into the roller coaster you never wanted to ride.
While many in society may look at me from the outside, they may think that I am not contributing to society or that my role as a stay at home mom is in some way insignificant, but I have been on the other end of the line. In my time of inpatient mental health, I laid witness to families that were struggling.
I saw the bags under the caregivers’ eyes as they tried to juggle the care of their loved one while trying to maintain a job. I have seen the toll that autism (and any mental illness ) has taken on our society and its resources and let me share with you what I have learned after my decision to walk away from my job to stay home.
It was not an easy decision to make to walk away. After all, I had done all that work for my degree and had 14 years in. But the last three months as I watched my sons behavior regress and his siblings’ grades decline I began to take another look at our arrangement. In trying to juggle everything, I was only giving a percentage of me to each commitment.
When I was home, I was just preparing for the next day; my focus was never solely on my kids. Likewise, when I was at work, my mind was at home. I began to look around me and ask myself as a mental health technician what was it about certain patients that made them among my favorites to care for. As my son is on the more severe end of the spectrum, I have accepted the realities of his prognosis. He will never live alone, and I made the switch in thinking about two years ago from him being independent to him being as self-sufficient as possible to make him the kind of person someone would want to care for.
I had realized early in my dealings in mental health that the ones that that had the most self-help skills were the ones who fared the best, regardless of their mental capacities, in these types of environments and received the “best” and “kindest” care.
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As I sat at the end of the long hall of the unit I had an epiphany and the question I asked myself would forever change my mind about juggling work and special needs parenting. “While I am here working with these patients who is at home working with my son? Where do my talents and my education have the opportunity to have the most impact?”
I sat in deep contemplation; after all, I loved my job. It was my passion. But then I realized that I also have a responsibility to those that would come after me to make my son as independent as he could be. Not only to make their life easier but to free up the time of those out in the field to be able to do more for other special needs individuals that may need more help than my son.
I also thought about my other two “typical” children and what it would mean to their future if they took on the responsibility of caring for my son if my son could even just shower on his own or make his own sandwich.
That evening, I turned in my resignation to a job I loved to care for a child that I loved even more. Now, two weeks later, I find myself writing this to you stay at home caregivers to remind you that your sacrifices at home and in your lives, while now seem to be going unnoticed, are having a vast impact not only on your child but your entire community.
While it may be hard to see sometimes and society may tell you differently, I am here to tell you from both a professional standpoint and a fellow special needs parent standpoint that what you are doing in your home, in those therapists’ offices and waiting rooms is far more valuable than that paycheck with your name on it.
Not only are you opening doors for your child and supplying him/her with all that these therapies have to offer, but you are also making yourself available to grow with your child. You are helping in more ways than you could ever know and more ways than I could ever list here. And if people make you feel as if you are not “contributing to society” because they have the mindset to measure success in economic terms, tell them that every new skill your child learns now saves money on care in the future and that the more we work together as a team, the farther the child can go.
This article was featured in Issue 90 – Practical Ways to Build Skills for a Lifetime