I found true inclusion and now I don’t want anything less.

Rightly or wrongly I have decided that I want Wade to try mainstream activities first before we try disability specific ones. This is not a judgement on other parents choices, different kids need different things, it’s just the Plan A I have for Wade and then I’m prepared to go to Plan B if needed. But it’s hard to reconcile the high expectations I hold for him with the question that constantly rears it’s head in the back of my mind.

Are you doing this for him or for you?

It’s a challenge I constantly put to myself to try and keep myself in check when I plan a path for Wade. While it would be wonderful for me to high-five myself into next week for “achieving” full inclusion into 100% mainstream activities, it wouldn’t mean anything if Wade was struggling through them, constantly missing the message or just flat out not enjoying himself.

With all of that in mind however, I think it’s really important to ask “why not?” before I ask “can he?” when I’m choosing an activity. And so it was when I thought about swimming classes. I had thought about one-on-one hydrotherapy then I just thought…stick him in a class and see what happens.

When we first started, I was really apprehensive about it. Group classes…other parents and kids all much more physically capable than him. I wasn’t worried about how he compared to others…I know he has developmental delay and I don’t need him to be better than all the rest but I do need him to have the space and time to hear the instructions, and complete the movement in a way that doesn’t hold up the whole class. At the same time I need to give him the idea of what we are trying to do without rushing him.

We started at one class which was a disaster, the classes were disorganised and slap dash. Down syndrome had nothing to with it…I just hated the classes, so I decided to try Paul Sadler Swim School. Best decision I ever made. I went down for a tour and a chat and launched into the obvious about how Wade has Down syndrome and asked how much space would there be for him to learn at his own pace and blah blah blah….
It dawned on me quickly that I was the only one worried about Down syndrome here. It just wasn’t a problem. He was 18 months old but we would try him in with the youngest class and just see how he went.

His teacher, Alex was an absolute dream. We went at our own pace and I took my time with each element of the class and made sure that he was at least watching while I gave him a visual sign for each instruction. I constantly repeated the word for the movement at the same time as I was showing him. I was that crazy mother saying “Kick kick kick” over and over. There was this constant stream of noise coming from me as we did “monkey monkey monkey” then “swim swim swim”, “use your hands Wade use your hands”, but I really didn’t care. It was more important that Wade understood what we were doing and why. Each new milestone was met with huge celebrations and lots of cheering (from me mainly!).

Some days were easier than others and some days he loved more than others yet slowly but surely he started getting better. Alex would just appear to keep him on track and show him how each movement should look. Bit by bit over the last 12 months Alex and his other teacher Jacinda have helped me push Wade a bit further to test his skills and see what he can do.

When we first started we were given a big poster of all the levels that he had to reach before he could graduate to the kinder class. It seemed like a lot. Some of them he ticked off quickly and early, while others I started to wonder if he would ever do them. Every time he learnt a new skill we went home with a sticker to mark the occasion on the poster. I looked at the giant space that read “You have graduated to Kinder class” and wondered if he would ever get there. I couldn’t imagine him treading water, jumping off the edge safely or swimming without my help.

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He started getting more and more stickers and I realised that with constant reinforcement and a bit more willingness for me to let go, he was learning really well. I will admit to letting go a few happy tears the day I took my hands away from his body and realised that he was swimming….on his own…(with floaties and a belt)…and loving it!

Then when we started back this year after the break, the centre manager came up and asked when Wade turns 3. I told her he had just turned 3 a couple of weeks ago.

“Good. Then he is eligible for the kinder class”

The class without the parents in the pool???

“Do you think he is ready?”
“His skills are certainly there… I don’t see why not”

We then had a discussion about learning how best to communicate with him, how to get and keep his attention and how to work towards making it happen.

We agreed that he needed a few more refresher classes to make up for the Christmas break. Then we agreed that Alex would take him one-on-one outside of class times to help learn how to communicate with him and see how he goes, then we would plan to put him up when we were ready.

Just like that.

No begging
No fighting
No applications for funding
No special treatment
No pretending he can swim and giving him a plastic encouragement trophy
No forms
No extra staff
No medical clearances
No sideways glances
No rolling eyes
No hesitation
No problem

Just…”he is eligible, how can we help make this happen?”

I was so stunned at how easy inclusion can be when people just get it! I didn’t even have to ask for it. (This is the same place who deftly dealt with my monumental meltdown a while ago BTW)

After a couple of weeks for him to get back into the swing of it, Alex took Wade on his own in the kinder pool before class. I was nervous. I had visions of him cracking it or refusing to listen to anyone but me.

Ha! I couldn’t have been more wrong.

This cheeky bundle of mine laughed and giggled his way through very single instruction Alex gave him. Alex shook her head in amazement as she told me how well he compared with other kids in the kinder class. I couldn’t control my emotions as I remembered the doubts I’d had about whether Wade would ever learn to swim when I first thought of enrolling him. Now I was watching him about to move up with his peers and swimming as well as any of them.

Then he decided to ramp it up another notch.

Since we started swimming 18 months ago, I have tried to get him to jump of the side of the pool into the water. I have cajoled, encouraged, sang songs, tricked him, helped him, shown him….done just about all I can think of to get him to do it….zip…nada…niente.

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5 minutes in the pool with Alex without me, and he leapt off the side like he had been doing it for years. Not content to rest on his laurels, he then upped the ante by leaping off the raised platform at the end of the pool. If I hadn’t been so damn proud I might have taken it personally!

At the end of the class that week, he had achieved every thing he needed to move up and he Graduated to Kinder Class. As we said goodbye to our old class I lost it…sitting on the edge of the pool ugly crying. This is what real inclusion feels like. It’s not a big deal, it’s just people recognising what he needs and asking how they can help us get there. When I think about how hard parents have to fight to get understanding and support for their kids in some mainstream activities like schools and sports clubs, I was so grateful to get to experience this. This is what real inclusion feels like and for all those unsuspecting teachers and coaches ahead of us in the years to come…what I will be using as my benchmark from now on.

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15 thoughts on “I found true inclusion and now I don’t want anything less.

  1. That’s awesome! It sounds like you found a wonderful setting with really good teachers. My Owen loves swimming and has been taking some type of lesson (parent/child, 2:1, 1:1) since he was 6 months old. During the summer, we are going back to the YMCA and he will be enrolled in a regular class setting (4:1). Swimming for Owen has been the place where he nearly on typical peer level in terms of skills, so it’s exciting to see him do all of these fun things in the water.

  2. thanks for sharing Leticia… I’m so glad for you and Wade! My first response to your early question about doing it ‘for him or me’ was they don’t have to be mutually exclusive! And sometimes the irony is even when you might start off ‘doing it for you’ given your commitment to inclusion… Ultimately that is for wade. Somewhere, some time ago that swim school or perhaps some of the teachers in it probably would not have had the experience they have now to create a truly inclusive environment and it may not have been great, but when we ask it of them, help show them the way, they can and do get there. I’m with you – once you’ve experienced it, you don’t want it any other way. And I think our job and that of our kids is as teachers. It’s a hard path sometimes… For all involved and sometimes it is just too hard and time to go somewhere else. But I think of those that have done it before us as my inspiration… They’ve provided the little opportunities of respite… The places you find where it just works, like your swim school… And now to tackle the rest!! Thanks for sharing!

    • Thanks Monica! It’s true that we can’t just sit back and wait for inclusion to happen. It has to be driven by parents and self advocates so that it is meaningful and correct rather than some guesstimate by administrators at a token effort. It’s something I try to do every time I interact with people even if it’s subtly. But I gotta tell you…it was a wonderful feeling to be surrounded by people who just got it!

      • Yes… We had it at kinder… Which made it harder entering school and having to be a ‘teacher’ again! I’m glad you found it there!

  3. Pingback: Inclusie – wie is er bang van het downsyndroom

  4. Hi Leticia,

    This is such a beautiful blog! I came across it on The Mighty site. With your permission, I would be honored to re-post this on my website’s blog, https://TheBehaviorStation.com (all authorship would remain yours).

    I have family members with autism and cerebral palsy, and I advocate for inclusion every day. In real life terms, “inclusion” does not mean being in a general education classroom or being in a swimming class with typically developing children. Inclusion means what you so effectively demonstrated here: being included — acceptance and a chance to do their best (in any environment).

    I became a Board Certified Behavior Analyst (BCBA) because of what I learned from my family members: “different, not less.” We are all different, regardless of whether or not we have a diagnosis. We all deserve the best, and people with diagnoses are no exception to that. I have chosen to spend my career working with people with autism and developmental disabilities to help them reach their maximum potential. Every one of my clients is someone’s family member — and I know what it is like to be that family member. I would be thrilled to share your blog as it advocates for this message; we all deserve to be “included.”

    Please let me know how I can contact you, or feel free to email me at Tiffany@TheBehaviorStation.com.

    Best,

    Tiffany N. Kilby

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