Thursday, February 16, 2017

Dear world: It isn't that hard to include my child with special needs

Last fall, the temple we belong to started a recreational youth program. I signed up Sabrina. I emailed about Max, unsure what kind of answer I'd receive.

You can never, ever just sign up your child with special needs for a so-called typical youth program. First, you have to pave the way. Sometimes, you have to nudge people past the obstacles in their minds. Sometimes, you try and bulldoze your way in only to find the roadblocks are insurmountable.

I'm used to this. It doesn't bother me; it comes with the territory of being Max's mom, head cheerleader, chief publicist and professional bulldozer.

And so, I emailed the program director, Avi:

"I have a son who'll be 14 who has special needs. He is honestly one of the most charming/sociable/friendly kids you will ever meet. I've been wondering about including him and would love to discuss with you."

We had a talk. I explained that at times, Max might need a hand–with opening food items, making himself understood, with toileting. Avi seemed remarkably chill about it, which surprised me. That, I wasn't used to.

There weren't lots and lots of questions about what Max could and couldn't do.

There wasn't any mention of not being "equipped" to handle someone with extra needs.

There wasn't any "Well, I'd like to help but I'm not sure" hemming and hawing.

There wasn't "Let me think about this and I'll get back to you."

There was just, "Sure, let him come!"

An open mind. Including children and teens with disabilities in activities and programs and basically anywhere starts with that. It's what I so joyfully encountered last year when I approached the director of a local dance school about getting Max tap lessons, and she was all "I'm happy to help in any possible way." And boy, has he been loving his tap lessons.

Sabrina went to one event with the group, and we didn't get around to another until last weekend, movie night. Sabrina decided to go. Max wanted to as well. We didn't know which movie was playing, although I took great delight in telling Sabrina it was "The Little Mermaid" because she's 12 and cooler than cool.

I warned Max about not eating popcorn, as it's a choking hazard. He knows to avoid nuts, since he's allergic. When we got there, Sabrina and her friends ran to the youth room upstairs and I helped Max in the bathroom. Avi came out just as Max and I were about to get onto the elevator and we said hello.

I left my cell phone number, in case he had any questions or Max wanted to leave early.

Meanwhile, Max headed over to the staircase.

"He might need help with the stairs if he uses them," I said.

"No!" said Max, who proceeded to carefully walk up a flight of stairs. Because of course, one of the great joys of being a teen is proving your mother wrong.

There were three kids hanging out in the room. I told Max to introduce himself, and he did and then they did. No biggie.

Outside the room, Sabrina and her friends had found a giant ball and were kicking it around. Max joined in. I stood there and watched, then tore myself away and headed out, still not believing it had been that easy.

At home, I walked by Max and Sabrina's empty rooms and I felt amazed that they were both out at the same program.

Another mom was driving them home. I texted her to say "Max just needs a helping hand getting into cars—OK?" And Stephanie responded, "Of course."

No. Big. Deal.

Both Max and Sabrina arrived home happy and excited. They'd watched Mean Girls. Max had some apple juice. I emailed Avi to thank him. "He adds so much to our group with his charm and excitement," Avi noted. "I wanted to thank you for encouraging him to come."

It was the first time in all of Max's years that anyone had ever thanked me for bringing him to a program. And he couldn't have been more right. Children and teens with special needs don't just benefit from inclusion—the other participants do, too. It expands their minds, their hearts and their world to see that heir peers with disability are just like them in many ways, and fun to hang with.

I'm not saying that inclusion is always a simple thing. People running programs have to be comfortable with participants' medical needs. Avi didn't seem fazed that Max has had seizures, and that a call to 911 would be required if one occurred. Also, our children can demand attention and assistance that places may or may not be willing to offer due to lack of resources. Max sitting on a sofa watching a movie is one thing, but if the group does a physical activity like ice-skating he would require a person by his side on the ice as he used a walker.

Years ago when Sabrina belonged to a gym, they had the occasional Parents Night Out staffed by college-age girls; I'd tell the coordinator in advance if Max was coming, and she'd have an extra staffer on hand. The gym we belong to also used to let Max come on Parents Night Out. Then one day we got a call from the director that he was no longer welcome because they didn't have the right "support" for his needs. They closed the door in our faces without offering us a chance to discuss how we might be able to make it work.

Like I said: open mind. 

See also: 8 ways to include kids with special needs in programs, events, classes, camps, wherever


  1. This is great and I am so happy for Max and your family for this wonderful experience of inclusion. As you admit, however, things are not always feasible. One of the problems we have encountered is bathroom assistance. I fully understand that not everybody is cool about helping a teenager with certain things, and we have been very careful not to include our SN daughter in programs together with her siblings if we weren't sure that staff was willing to help, in order to avoid our other children having to take Daisy to the toilet. Not being fully independent is also a huge issue regarding play dates. How can you ask another parent to help our daughter go to the bathroom? I don't know how you address this issue, but to us it is a major problem, and one that does not simply require an open mind. Thank you for your wonderful blog, it’s a pleasure and a great source of inspiration for us all! Carmen (mom to Daisy)

    1. Yes, we've encountered that too, which is why I was so pleasantly surprised when I mentioned it to the program director and he didn't seem fazed. We've also run into this issue hen we have gone on cruises. This time around, I dealt by helping Max out in the bathroom before the program started. In other instances, we have been on call to come and help with bathroom breaks, which has obviously meant Dave and I could only go out close by. It's been an acceptable compromise. This has not been an issue with programs for kids with special needs. E.g., at the prom Max went to last week, there were medical staffers who could help as necessary.

  2. The amount of stress that is lifted off of my shoulders when my son is included and loved upon and I am not met with that deer-in-the-headlights look is immense and so very appreciated. I don't think I fully realize just how tense I am when it comes to having him in social situations with his neurotypical peers until some wonderful soul is unexpectedly welcoming and kind and I feel myself relaxing and able to breathe again. There are so many wonderful, loving people out there and I am so grateful when I encounter them- I doubt they realize just what a difference they are making just by being thoughtful and kind.

    1. YES. It's both a relief and a breath of fresh air. I hope that as more parents like us write and talk about this, we open people's minds.

  3. What a wonderful post! You are spot's NOT that hard to include our children. And the more special needs kids that are participating with non special needs kids, the more common it becomes, which means it is less awkward for everyone!

  4. "He adds so much to our group with his charm and excitement," Avi noted. "I wanted to thank you for encouraging him to come.""

    I love that the counselor took the time to say that to you. I also, I will admit, love that he *didn't* say that the other kids learn from including Max and his challenges, but that he just recognized Max's personality. His "charm and excitement" and that beautiful smile (which all your babies seem to share) are something Max seems to brings to the table (I say seems, since I don't know Max personally, but only through your blog).

  5. Interesting article you might enjoy

  6. I am happy this was so easy, and continue to be amazed and discouraged that it is mostly hard. But good for you and Max for this win!!


Thanks for sharing!

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