Why We Push

It was only an hour and a half into the first day of my son’s school-sponsored summer enrichment program when my phone began to ring.

It was supposed to be math camp – my 6 year old’s first love. Not enough kids signed up so they went with our third choice, farm camp. He does not dig farming so much, but I had viewed it as a chance to be around typical kids in a safe and fun environment.I had no expectations that he would grow even remotely in his love of farming. 

I 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 had done my homework, prepping the teachers and staff and I had a good feeling about the upcoming week.

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 instead I eeked out a weak, “Hey.”

“Ms. Turner, we feel terrible but Wesley just isn’t participating.”

I breathed in deep to gain control but I could feel the tears coming. I thought we’d been over all of this the week before when I called ahead. “What do you mean? Is he causing a problem?” I asked.

“No, he’s not disruptive. He’s just not interested in anything. 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, in a little bit of shock, and willing back the ugly cry.

They didn’t want him there?

______________________________________________

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.”

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? Is it okay if we attend?” 

In my rational brain, I know it’s not a snub. It’s not personal. It is often about accommodations and safety. I do get it.

Still, it doesn’t make it any less hurtful as a mom. Because though, as special needs parents, we strive for inclusion, the reality for many of our kids is that inclusion just isn’t always possible.

But, I won’t stop pushing. 

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. In so many words, I was being told that though this was through our local school system and “open to everyone,” this was not where you experiment with your special needs children’s social skills. 

This realization hit me like a ton of bricks. But, this was the school system. If not here, then where?

Skill building can’t be contained to the special needs hallways and classrooms. We have to give our kids the chance to learn in typical settings and give them a nurturing space to fail. We have to understand 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.

Of course none of this came to my brain at that moment. I was just standing in the lobby, sobbing when my son came out of his class, tugged on my sleeves and asked me why I was crying. 

Then as if on cue, he said, “I can’t wait to come to camp tomorrow.” 

I looked up at the program director and said, “he thinks he gets to come back tomorrow.” 

The truth is we couldn’t have really known what Wesley was getting out of it. People who don’t work with special needs kids forget that so many things just take time, and with our most scheduled and socially shy/disinterested children, adapting to new things can take a little extra space and patience. 

If a sobbing mother didn’t make her heart grow three sizes, the adorable six year old at my sleeve asking about the next day worked it’s magic. 

But, I think she saw my struggle. I think she keyed into my dilemma as a mom of a kid on the spectrum. 

How can we expect them to be READY to be included BEFORE we are willing to include them?

We agreed Wesley would finish the week.

Our takeaway: 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. As excited as you may be about it, some kids are gonna hate the chicken dance and abstain from your hay bale game. 

Sometimes you won’t see the effect you’ve had on them at all.

But don’t underestimate your influence.

Because…

Everyday after camp that week, my son and I talked about his day; He sequenced events (a skill he was 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 overall interest in farming left something to be desired, this camp enriched him in ways and areas more specific to his particular needs.

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 children 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, full stop.

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

Written by, Rachel Turner

Rachel Turner is a freelance writer and humor blogger. She sometimes writes about her son’s autism journey and has been featured in Motherwell Magazine and Guideposts. She lives in Georgia with her husband, two sons and a needy Aussiedoodle. Drop by her blog for a laugh, rachelwriteshere.com

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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