Welcome to Autism Awareness Month!
I am challenging myself to write a post every day this month.
Will I succeed? Probably not.
Today I want to talk about my biggest struggle as a mother to a child on the autism spectrum. If you have been following me long enough, you know that I lost my full-time job back in the fall. You also know that we have struggled with childcare and daycare expulsions in the past.
That stigma seems to follow us around.
While the last 6 months home with Ally have been priceless (and financially draining), I am ready to go back to full-time work. I have been working 3-4 days per week as an Adjunct Professor for a few hours per day but the money blows. Some dream jobs are not worth starving your family for.
But there is good news! I recently accepted a full-time job offer at one of the colleges that I teach at. While the job itself is not teaching directly, it impacts education and is challenging enough to keep me engaged.
Who would think that after all that I have been through with having to problem solve my entire life non-stop that I would look for work to provide an additional outlet to keep me on my toes? I guess I’m insane. But anyway, I landed an awesome job that I start in May and I have lined up my caregiver interviews to get Ally through the rest of the school year.
The plan was to send her to summer camp after that.
We toured a few camps last week. There was one that my daughter absolutely hated and she even cried in the parking lot,
“Mommy, you are not going to leave me here are you?”
Then, there was another one that she absolutely loved and has been talking about ever since. She got to meet a hermit crab and explore their playground. She seemed to make the director laugh as well.
Then she saw a familiar face. A teacher from one of our previous daycare centers. While she was a teacher I liked, my heart sank.
I hope she doesn’t blow this for us.
While I don’t go parading into summer camps and daycare centers announcing my daughter’s autism (because it scares them away), I found myself quickly admitting that it didn’t work out at that place because of an issue with the bus. I admitted that I went a bit psycho on them about it because my child was put into direct danger. That was the truth. It really was. The director seemed to shake it off like no big deal.
She would have done worse had it been her kid left on a major highway.
Okay, this is going to be okay, I told myself.
Before the tour ended, I knew this was the right place for Ally. She liked being there and felt comfortable seeing that familiar face.
I made sure to get the pricing, registration info, and the director said that they had plenty of room. I explained to her that I was still waiting for my official offer letter for the position as I only had the unofficial phone offer. I really wanted the solid offer in writing before paying all of those fees in case anything falls apart. Anyone that knows me knows that I am a planner. I got the ball rolling on finding childcare the moment I found out that getting this job was even a remote possibility.
The director assured me there would be room and to let her know in a few days once I find out about my job.
Monday morning I got the offer and quickly called her back get Ally registered in their summer camp program. But nobody answered. I called again and again. Then by the late afternoon, I grew impatient and called from my house line and the director I had met on Friday had answered.
There was an awkwardness in her voice. She asked me to hold because she had been so busy all day giving tours that she had a feeling they were starting a waiting list. I started to feel sick and I let her put our name first on the waitlist.
When we hung up I wondered if I was being a paranoid psycho or if maybe her old teacher told them something about my daughter and her past. I have PTSD from all of our childcare woes. I drove myself crazy and had my friend call to ask about her son being enrolled. But she got the same story about a waiting list. So maybe they didn’t lie.
Then I jumped down the rabbit hole of feeling bad for my child. Feeling bad if she has to spend her entire summer alone with another nanny isolated from her peers. I loved the idea of her playing outside, going on trips, and socializing with other five-year-olds. The thought of her sitting at home on her iPad made me nauseous. She doesn’t deserve this.
At 3-years-old, we had been through four daycare centers. My daughter was aggressive and had behaviors that were too challenging for typical centers to handle. She had also just been diagnosed and hadn’t received services yet. Since 3, she has spent almost two full years in speech, OT, and ABA; she is also on medication. She is a completely different person. Last summer, she was able to go on class trips and we even cut back on her ABA hours at summer camp.
That’s the other thing—I’m prepared AF. I have 25 hours per week available to send her ABA therapist and BCBA to help manage her should there be any problems. While she still needs some support, she is not the kid she was two years ago. She has learned to communicate, to better process sensory input and to behave better. Not perfect but closer to her typical peers than ever before.
I would hate to think about teachers spreading rumors about who she was at 3-years-old. But I truly hope that I am just being paranoid.
This is high-functioning autism everyone. I got an awesome job and now I’m losing my mind over childcare. I didn’t plan on hiring a nanny for the entire summer but it looks like that is back on the table.
Now my back-up plan has been to see what happens with that waiting list to see if it’s meant to be for her and to look into some of the summer recreational programs nearby so a nanny could take her to socialize.
That also means that my nanny’s take-home pay is going to be significantly higher than my own. I feel like I am holding my breath looking for the light at the end of this tunnel. This money-sucking tunnel.
Sadly, this is our life getting easier. Also, this is just our luck.
We are always dropping balls but we keep on juggling.
I just want to be able to go to work and stop worrying about this stuff.
Is that so much to ask for?
This is how autism impacts my life.