The first parent support group meeting I ever attended left me feeling hopeless and totally alone. It was after my daughter’s back to back daycare expulsions that left me desperate to seek help.
Desperate to figure this out.
In that meeting, I wanted to know what they did with their kids. Where did they send them? Are there places that can handle kids with autism? Where are all of the autism kiddos during the day?
What I found out was that many of them had at least one parent stay at home. There were moms in that room that were teachers, nurses, and more. I felt sicker with each story they shared.
Those parents warned me that I would need to go on FMLA, but be prepared to lose my job afterward.
Be prepared to sell your house, dip into your savings, and possibly even your retirement. You’ll soon learn that money doesn’t matter. That nothing else matters.
Be prepared to pay someone hourly or to stay at home because kids with autism can’t handle group childcare settings. And childcare settings can’t handle them. That’s what they said to me and I never forgot it because it hurt. And it sounded bonkers to me.
I left there feeling defeated and angry. Angry about how they gave up so easily. Angry that they were okay about not having access to affordable childcare. Defeated by the eye of this storm called autism. Defeated because I was hoping for support, not to see my entire life fall apart through their crystal ball.
Why weren’t they fighting harder for inclusion? Or creating programs for autism families? Changing laws? Why weren’t they filing ADA complaints? I didn’t understand it at all. I felt like I couldn’t connect with anyone there because I wasn’t willing to give up my career and dedicate my entire existence to autism. And did that make me a terrible mother?
I spent the next several months bringing my child to behavior therapy, speech, OT, and we medicated her with drastically promising results. After doing my research and working with an ABA company, I sent her to daycare again with supports because it was still half the price of paying for a nanny and the thought of my preschooler sitting home all day isolated from her peers was too heartbreaking for me to even consider. I also couldn’t afford it.
Within the first few months, she was finally able to adapt to going to daycare and she let me leave without tears. She was finally able to participate in activities and follow some of their rules and routines. But there were still issues here and there, mostly when her therapist wasn’t there.
Needless to say that over a plethora of things, our enrollment was yet again terminated after sixteen months. But this was progress, she had made it longer than ever before and she had learned to assimilate into their routines. We had truly made progress. This gave me hope for the future and as she gets older and I believed, the way typical parents do, that this would get easier.
At that point, there were no more daycare centers left to try so we searched for and hired another nanny that became impossible to pay for after the first few weeks.
After a few short months, I found myself out of work and spent the next eight months at home with my daughter. I taught college courses part-time while she was at her half-day public pre-school program but it wasn’t nearly enough to get by or to make a dent. This put a lot of pressure on my husband and I felt like a complete and utter failure.
Everything I did, I did well, until this. Until being an autism parent. It was like the entire universe was working against us.
Those months were dark and that crystal ball from the parent support meeting had read true. But I still had hope. This was going to get easier. Once we have a full-day program, this would get easier. It had to get easier. It had to get more affordable. This can’t be our life indefinitely.
Over those last few weeks of summer, I noticed parents sharing in their excitement about the burdens of daycare coming to an end with Kindergarten starting. I rejoiced right along with them. I felt that in my soul.
I couldn’t wait for the summer to end. I counted down from the moment it started because we could barely get by. Between catching up from eight months on unemployment to paying babysitters it was hard.
But there was hope. I felt like we were finally going to catch a break like everyone else. There was finally another childcare option cheaper than paying a nanny.
When we got a flyer about the third-party sponsored aftercare program at school for only $263 per month, it felt like we could finally see the light at the end of this dark tunnel. Like we could finally catch up.
My nerves began to settle after the first day when I saw her make friends and play on the playground with them, I still sent her ABA therapist for support, just in case.
But on the second day, the expulsion threats started again when she ran from the group seeking peace and quiet from all of the noise. When she fell asleep on the floor.
When she cried.
When she had a meltdown because adjusting to Kindergarten is hard enough as it is, adding two hours of after-care to the mix was like pouring more water into a cup that was already filled.
I found myself physically sick from stress; an entire weekend was spent throwing up and hyperventilating at the thought of this not working out and having to go through this all over again. It felt like I had failed again at life and at being a mother.
While we have come so far, to a point where she can say she wants a break versus aggression and screaming, it feels like we are always two steps behind on whatever developmentally appropriate behaviors are expected of children her age to participate in things.
And maybe that is the problem. Maybe the system is broken and we are putting too many demands on kids these days. Or maybe it is the lack of programs designed to include kids with autism. But I kept reassuring myself over the summer that this wouldn’t happen again. But it did.
And here I am feeling defeated and hopeless, just like that day two years ago when I went to that parent support meeting because they predicted my future, one I tried to fight, with absolute certainty.
And I am tired of fighting.
If you are a working parent to typical children, please try to understand what this is like before you complain about our kids or judge us. Imagine that your child’s after school program was shut down as of tomorrow and your school district won’t bus them anywhere else other than your home. Imagine you have one day to figure this out and no family to help you. What do you do? How do you feel?
That is what it feels like to be an autism working mom. Like a revolving door that just keeps swinging at you.
So here we are again. And I’m left asking—if there aren’t programs designed to serve children with special needs, why isn’t anyone creating them? If programs operated on school property are designed to exclude kids with special needs, why are they there at all?
I could fight to keep my child in a program that doesn’t want her because it makes my life easier but what I should be fighting for is a program that works for her and helps me as a working parent because I am still not willing to give up my career and succumb to autism. This led me to one of my hardest truths as a special needs parent—that my child can’t function [right now] in a typical program after school. She needs to come home and unwind.
And while those parents in that support group years ago did try to teach me something I had to learn and experience for myself to truly understand, I still think there should be somewhere for these kids to go or at least more to support us as parents at home in regards to childcare because not working can’t be the only universal option for everyone. While I have been approved for the respite care program in my state, I want to point out that for the average family, it’s not enough. And it still keeps our kids isolated.
I truly thought this journey would get easier as she ages, but it’s getting harder.