22 October 2017

GET WITH THE FU*&ING TIMES! INCLUSION IS THE NEW COOL!


Do children with Down syndrome deserve to join community sports teams alongside their peers who do not have Down syndrome?

It's such a simple answer ...... "HELLS YA!"


I recently contacted a dance studio in our community and asked a few questions about their programs for children. I was given some information and then when I brought up that my child has Down syndrome, the conversation petered off. I sent one more message and it was ignored. I was initially super pissed off and then went to the familiar ..... your loss cause she's awesome. 




It was the first time that I had encountered this with an organization. Adele has always been welcomed and one of the best experiences was with our community soccer association. She was greeted, she was included, she was spoken to like a little girl and they showed her respect. Isn't this how all individuals should be treated, no matter what? 

I get super defensive when I hear a story about a child being excluded. Not long ago, one of my closest friends sent me a text and my heart sank, my blood boiled and we swore a lot. 

Kelly - So I registered Michael for a gymnastics class (spoke openly with them beforehand about behaviour, expectations, redirection etc.) and today was the first class. It was awful. I had to step in because the instructor wasn't even trying with him. By halfway through, I wanted to leave because I could feel the tears ready to burst. Anyways, we made it to the end when I was told IT WASN'T A GOOD FIT. I just made it to the car before the tears finally burst out. I unregistered him. My husband says he's just not ready for structured classes and following direction. Now I'm second guessing my decision.
I'm so fucking tired, I don't think I have it in me to push back on this, but at the same time, I'm like...fuck them. He should be able to attend. But at the same time, maybe he isn't ready. How do you see the line when he is ready for structure and pushing him to understand structure? How will he ever learn structure if we don't force him? Am I expecting too much from him?

Me - It's tough. It's a hard decision to make whether to keep him in it or not. We tried soccer this past year and we stuck with it. She kind of did her own thing, but we were ok with that because she was being included by her coaches and teammates.
I mentioned once to James about pulling her and then was like....fuck that shit. I'm sticking this out because she's having a blast. 
Can't you get an aide through your funding? We can do that here with swimming lessons. Or what about a volunteer? I think it would be good for him.


Kelly - We don't qualify for funding because he's "high functioning." Another battle I'm exhausted from fighting.

Me - You're not expecting too much. We put our children in school and we don't just pull them out because they can't handle structure. We do the best we can. They do the best they can. They need some support. Down syndrome is life long and I've been told that they don't outgrow it.....aren't our children entitled to support? 

Kelly - I know he would have fun but he needs someone specific with him to redirect and encourage the listening and following directions.

Me - They should be able to provide that support. They should have somebody who can help. You need to call them and talk to the owner. I would have lost my shit today. 

Kelly - I know 100%, the reason why today was such a disaster, was because I was the one trying to get him to participate. He only melts down and tantrums for me. He wouldn't do that with a stranger, but no one was stepping in. I think I was too tired. I would have put up more of a fight, but I just didn't have it in me today.

Me - I would have been furious. You need to call. You have to step up. That wasn't ok. Things won't change unless you say something. They should be able to provide some support. That's just how it goes.

Kelly - I saw the owner this morning and she was just beaming at Michael. I don't think she knew the instructor's words to me. Maybe I should chat with her. The instructor was a huge part of the problem too. No patience. She didn't even try and Michael is all about pleasing people for attention. If she just gave him a little attention and praise, he would have bent over backwards for her. I'll look at maybe getting him help.

Me - It shouldn't always be you. It might take some time, but whatever. Some kids adjust quickly and others need some time. Kids are kids. We put our kids in sports because it's good for them. They get to build relationships, they get that socialization piece and we get to see our children having  blast. Why would the instructor say that it's not a fit? It was day 1. Give him a chance. She needed to problem solve. Figure it out. Fuck. I just got mad all of a sudden.

Kelly - Ya you did! 


Me - You talk to the owner. He will be fine. He may need some redirection. I need redirection. Ask my boss. We hit bumps. I know. It's frustrating. I know. We cry. We get mad. We get tired of fighting. Advocating is exhausting. You tell your husband that you need to fight for this because you need to pave the way for others. You let it slide and nothing changes. I'll fight for you. Let me tell you, Michael and Adele are going to thank us for all that we have done. They are going to succeed and thrive.

Kelly - I don't tell you enough how awesome you are. Thanks for the push.

Where is the problem?
That's an easy answer. Coaches, assistants and those running these programs aren't trained to work with children with any type of disability. They are trained to work with children who listen, follow rules, routines and directions. They aren't taught to problem solve. They aren't trained to work with all abilities. In a world where we are advocating for inclusion and acceptance, we continue to hit road blocks. I want my child to be welcomed on teams in our community without worrying about being discriminated against, ignored and a coach who doesn't know how to interact with her. 
Organizations need to train their staff. We come from all walks of life. We all don't fall into one category. 

Train parents. We are all busy. I get it. When a child registers for a team sport, the parents must read and complete a yearly training session online. Explain that we all come from different backgrounds, we have own own strengths, there may be a child on the team with a disability. Encourage teamwork. Encourage parents to have a discussion with their children about respecting everyone on the team. Let's be honest, kids typically aren't assholes, it's the parents. Let's start with the gown ups. 

Jake's Story


Ana's Story



I've struggled lately with Down syndrome. Preschool has been rough. I had a good cry the other day, wishing that my child could use her words to tell me how she is feeling. I wish that she didn't get frustrated. I wish that she could share secrets with her sister. I wish that she could say "good night" to us at bed time. I wish that the road was a bit easier for all of us. My heart hurts so much some days, thinking about the years ahead. We have been advocating for Adele since we found out at 15 weeks pregnant that she would be born with Down syndrome. I get tired. I get fed up. I get frustrated. Meetings. Community sports. Appointments. Fear. Worry. Judgement. 
We make it through, we push on, we keep advocating. Some days, I just wish it was simpler.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” — Mary Anne Radmacher 



3 comments :

  1. Krista,
    Although my fight is different from yours (ASD), it isn’t that different and all the experiences and sentiments you’ve expressed above will continue to rear their ugly heads. Take a deep breath and have fortitude as you continue to rally and advocate for your sweet child as there are others out there who will break and give up before they have even begun. All the effort I have made and continue to make has been so very worth it. You won’t always see it, as your journey is still at the beginning, but eventually the fruits of your labour will be very apparent. Keep on keeping on...

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    1. Thank you Genevieve for your words of support and encouragement. I truly appreciate it. We push on because our kids are truly amazing and wonderful beings. :) xo

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