Why We Push: Autism Parents in Action
It was only an hour and a half into the first day of my son’s summer enrichment program when my phone began to ring.
I had dropped him off with high hopes and typical fears telling him to have a good day, make friends, enjoy the activities and just participate a little. I found a Dunkin Donuts approximately two minutes from campus and set up my workspace until dismissal. I was ready in case anything went off the rails.
There I was, nervously working and sipping coffee when my phone lit up and began to vibrate. I wanted to grab the phone and yell, “What happened? I’m coming,” but I eeked out a weak, “Hey.”
“Ms. Turner, this is the school. We feel terrible but Wesley just isn’t participating. He’s just not wanting to do anything.”
I breathed in deep to gain control but I could feel the tears coming. “What do you mean by that? Is he causing a problem?” I asked.
“No, No, he’s fine. Not disruptive. He’s just not interested in anything. I mean, if he would just do something, it would be fine, but he doesn’t want to do any of the planned activities. He’s playing with toys in the back of the room.”
I sighed. “He has autism. He needs time. It’s only been an hour.”
“I know. Look, he can stay until the end of the day and then we’ll refund your money for the week.”
I hung up the phone, willing back the ugly cry.
They didn’t want him there.
This is what it’s like some days for us. These are my fears about new things and adventures. This is the risk you take each time you dip your toe in the waters of putting your child into something — I hate this word — “normal.”
But I refuse to stop trying.
I never thought I’d have to make phone calls to programs in advance and utter the words, “Do you have other children like mine in your program? Does this include ALL types of kids? Is it okay if we attend?”
It breaks my heart into tiny pieces every time I have to call ahead to see if we are welcome. In my rational brain, I know it’s not a snub. It’s not personal. It is often about accommodations and safety. I am a huge proponent of safety.
Still, it doesn’t make it any less hurtful as a mom. Because though we strive for inclusion, the reality for many of our kids is that inclusion just isn’t always possible.
But the issue at hand on this day was not about whether they could handle him, rather it was whether the class was the right place for him.
When I arrived a few minutes early for pickup to discuss the issue with the program director, though kind and warm, her fall back position was that this was an enrichment program. I knew what she meant. This is recreational and fun. It should come easily to everyone. This is not where you get IEP-type treatment. In so many words, I was being told that though this was through our local school system, this was not where you experiment with your special needs children’s social skills.
That realization punctured my heart the very worst. This was the school system. This is exactly where they should be doing this.
And not to demonize her thought process, I do get it. I also think she felt bad that I was paying for a camp that my son was clearly not interested in. BTW — Not enough kids had signed up for the math camp (my son’s first love) so we were in our 3rd choice. You should have seen the sigh I got from Wesley when he found out that math camp had become farm camp.
I promise you the point of this piece is not to get anyone riled up about the school system, as it is filled with wonderful, dedicated men and women that have been pivotal in our journey. This is more about educating those that don’t work directly with special needs kids that skill building can’t be contained to the special needs hallways and classrooms. We have to give our kids the chance to shaky leg walk through typical settings and give them a nurturing space to fail. Or trust that though their outward responses are subdued or nonexistent even, we really don’t know what’s going on inside their beautiful little minds.
In short, we can’t accurately assess their interest level via visual communication cues. They often struggle with that skill. Additionally, they need to be there for a whole host of other reasons. To develop skills typical children learned with ease but for some kids, they need multiple lessons and scenarios and real-world experience to master.
You see, I believe (and was affirmed by trusted professionals) that modeling is a very powerful therapy tool and the more my son is put into situations that challenge him to adapt and focus and learn — even through failures — the better he becomes at these things.
The truth is we couldn’t have really known what he was getting out of it. We also sometimes forget that some things take time. And with our most scheduled and socially shy/disinterested children, adapting to new things takes a little extra space and patience. We couldn’t give up on him and farm camp…not yet anyway.
I think she saw my struggle. I think she realized that I didn’t care anything about Wesley’s farm camp learning experience and what I think she did finally see was my truth for kids like Wesley.
How do we expect them to grow if we don’t put them in situations that are out of their comfort zone?
How can we expect them to be READY to be included BEFORE we actually include them?
After a few (million) tears we agreed Wesley would finish the week.
My point with this piece is to say that some enrichment camps have nothing to do with lesson plans or themed weeks. Some kids absorb things thoughtfully, are slow to adjust and don’t expand their preferred interests very readily. Some kids aren’t going to hug you at the end of the week and tell you they love you or draw an unprompted picture of you to hang on your wall. As excited as you may be about it, some kids are gonna hate the chicken dance.
In fact, sometimes you won’t see the effect you’ve had on them at all.
But don’t underestimate your influence.
Because…
This week, after camp, every day my son and I talked about his day at camp; He sequenced events (a skill he’s just mastering); He told me what his favorite things were about the day; He recited the room numbers of all the classrooms (of course); He listened to me when we talked about participation and expectations. Each night he told me what time we needed to leave to get to his camp on time. He even participated in some (not all) activities throughout the week.
So though his interest in farming left something to be desired, this camp enriched him in ways and areas more specific to his particular needs.
I am so grateful that the women who had my son this week, trusted me, worked with me and loved my son through this experience.
I wish I could tell you that we have all the answers as parents — no parent can claim that. Sometimes I feel so lost I don’t know what to fight for and subsequently feel like a failure.
Sometimes the new things we try for our child work great, other times, my ideas are complete disasters. But we push…we push because if we didn’t, we would wander aimlessly. We push because if we didn’t, we might miss some valuable lesson or love that our child will latch on to. We push because in all honesty, we don’t know everything.
Autism skill building is deeply entrenched in finding what motivates these magnificent creatures and those motivations constantly change. So we don’t know what that thing is that is going to reach them that one day when a troublesome skill clicks, and that is another reason why we push.
Finally, we push because we refuse to give up on our children, period.
So the next time you see a crazed, special needs mom crying in your front lobby asking you to just give her child a chance, just know that we can’t do this without you. We can’t get them to do the things that you can get them to do. We can’t manifest these typical environments in our home on a regular basis to rehearse school.
Our influence is strong but limited and it is gonna take a community, an army of people, to help them take these giant steps in development. They need patience. And love. And a chance.
“I cannot emphasize enough the importance of a good teacher.” ~ Temple Grandin
