Can you believe that January is more than half-way done? It’s true! Days are getting longer, the sun is shining down on us a little brighter, and, while we are in the middle of our first big snow storm this season, spring is (finally) on the horizon.

I am not winter’s biggest fan. I love the warmth of the sun in the spring and the blossoms the season brings. I love the hot summer sun of July, eating ice cream and playing at the beach in August. I love the crispness that fall brings.

So now that the holiday season is over and I can feel the sunshine on my skin as the days get longer, I look forward to summer.

Summer camp registration in our city has already begun – so it’s a good thing I’m thinking about summer plans already. With 2 boys in daycare, we only have Robert’s summer camp schedule to think about this year. Last summer I was on maternity leave, so the hunt for camps was not pressing, and more of a ‘nice to have’ experience for him (and a break for me with a newborn in the house).

My husband and I will both be working this summer, and while we have amazing support from the grandparents, we feel as though summer camp is a rite of passage for kids, and one that we don’t want Robert to miss out on.

While we are in a position to need very few weeks of care, we know that transition to school is difficult when Robert has been out of a routine. Camps offer the opportunity to have a set routine, where Robert follows a schedule and can therefore be more successful on the return-to-school transition.

Now we find ourselves looking for a summer camp that seems impossible to find. The exhaustion is real, and we’ve only just begun to piece together the options for summer care.

Currently, our options for French language camps are very limited.

One camp can accommodate Robert if we are able to provide a support worker. This camp isn’t funded through the City’s subsidy program, so we would pay the full camp fee in addition to paying for a support worker for Robert. This camp has great reviews from other people, and the director has a fantastic reputation. However, affording to pay for a support worker in addition to the fees for week of camp might put this one out of reach.

Another camp appears to be subsidized through the City, making it more affordable for us. However, when we reached out, they gave us the impression that any child who is not a typical child and therefore one who requires any type of support would not be welcome… we are pressing them for more information and for clarity on this. Once again, this camp looks like it isn’t going to be the right fit.

A 3rd option I have yet to reach out to, but was provided with contact information from a friend. We are hopeful, but we have to be realistic. The likelihood of a camp being affordable for us, accessible to Robert, and welcoming and safe, is starting to seem unattainable.

It’s January 21st and I am already exhausted over advocating for our son to be included in summer camps.

J A N U A R Y

This about that. I am already exhausted about advocacy for him to be included in programming 6 months from now.

Just when I feel as though our son is included – he’s loving school, getting invited to friend’s birthday parties, getting invited to hang out on PA days with classmates – and that we’ve come so far in acceptance and advocacy, something like this happens.

We are pulled right back to being reminded why we have a FULL WEEK in November dedicated to spreading awareness. We are reminded why shouting his worth is necessary, and the importance of advocacy in our daily lives.

It’s 2020, and we find ourselves standing on the shoulders of those who came before us, of those who fought for acceptance, inclusion, and for others to see the worth of people born with Down syndrome. We know that our son is no longer expected to be institutionalized at birth, and as we stand on the shoulders of those who came before us, we recognize how far we’ve come as a population of advocates.

It’s 2020, and we are reminded that we still have to forge a path for inclusion for those who will come after us. That we still have a long way to go.

We could give up on the French language camps. As I said, we are fortunate enough to be able to work out a summer care schedule for Robert without needing camps. We could simply enrol him in English language camps, like we did last summer. But the point is, Robert should have the right to be included in the summer camp experience, and he should be able to attend a camp offered in his First language.

It’s 2020, and instead of fighting for our son to be included, he should simply be included.

After all, he’s a vivacious, smart, tenacious and active little boy, who brings so much to the table when he’s included.