It seemed simple enough. Walk into the daycare. Fill out an application. Leave a check and walk out with start date. It was suppose to work that way. But, one look at my son and the conversation changed. Don’t get me wrong, he’s a looker. Well, actually, he won’t look at you but he’s dashing … across the room. You know what, he’s very good looking! And 5 and Autistic.
“Is he potty trained?” was a question I fought with. The real answer was “kind of ” but when that wasn’t acceptable, I felt a sense of shame mixed with “Isn’t this a daycare? Didn’t that little tot just run past me in diapers?” But it was more than that. They were fishing for cause to say no without saying “We don’t care for special needs.”
For the love of God… I came in specifically asking that question. Do you care for special needs kids? It’s a Yes Or No leading question. There’s no need for jargons and permutations. I’ve walked into salons and asked “Do you have a stylist that works with Black Hair?” With my face, no one has ever said “Do you mean as opposed to Brunette?” No. they knew that I meant race and the answer was either Yes or No. With my son’s seal sounds and flapping hands, they knew they were looking at a special needs boy. “No, we don’t” would have prompted an about face. Rather, I received statements akin to “We will gladly accept him once he can…” Let me finish that … act like the other 5 years olds?
Regardless, I really wanted him to be in a social setting so I pushed. And they gave us the tour and said things like “I will call you but I don’t think we have the space.” At first I felt condescended upon and thought, “I’m never going to that place. They are so rude”… you know, still thinking I had a choice but the next place was no different and the 3rd place simply said “is he always this active?” To which I may have lied and said “No, just overly stimulated right now.” But, I was not taking No for an answer. I had just lost my Nanny of 3 years to her having her own baby and the summer was fast approaching and I needed him in a social setting! So they needed to come up with something better.
One representative finally levelled with me. She said “We had one student in the past. We thought we could handle him but we couldn’t and it created a problem to the point where we had to ask the family to leave. From that experience, we learned about the IEP. Get me that plan and I can tell you if we can provide what he needs or not.”
Finally! Someone who can move past stigma and judgement and give concrete answers for their NO! One look at his IEP and she had it. And I got a concrete: “Unless you provide him with an aide, we cannot accept him.”
Provide an aide. As in bring a Sitter to the Sitter.
Okay. Got it.
Day care is not an option.
It was a sad realization that day. I didn’t want to accept that. Here I am, trying so hard to matriculate him into “normal.” My neuro-typical daughter was already accepted and age matched with friends for the field trips. Dark moments gave me pause as I felt his future pain knowing that his acceptance in this world is highly conditional with no promises. I was hurt…for him. I cried. And I held him. And breathed.
But, we needed to move on.
I called agencies and individuals. And the bottom line was we need more cash to care. Fine! No Problem! However, when I asked for training or experience, I was met with “I have a friend with an autistic son” or “I’m a quick learner.”
How do we manage? How are other autism parents getting by? What’s the secret sauce! Had it not been for incremental changes in my life – sanity would have been a lost cause. So, I’ve come to one conclusion – and that is … we are super! For those of us who are able to obtain assistance, whether it be from government, institution or next door- you are super! And for the us who are at home – you are super! and the us who work outside the home – you are super! and the us who are still searching – you are super, too!
Shake off the blues and pick up the phone. Call your Early Intervention Agencies. Call Sitter Agencies. Call Autism Mom Hotlines. Call our Special Ed PTA Directors. Call your ABA instructors. Ask your teachers. Stop by your local college and post a job by the Education department or child psychology department. Post questions to your local facebook autism group ( ie SASI, SEPTA) and do not settle for high cost, low service. I did. Because I was too tired. Too frustrated. Too overwhelmed. And it costed me.
What did I end up doing? It took me 6 years but I finally asked for help. And that was super! Because my mom said yes.