22 October 2017


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 

20 February 2017

Will Bedazzling My Vagina Save My Marriage?

I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier. 

That was bullshit! Well, the part about a stronger, healthier marriage. 

Marriage is tough at the best of times and then you throw in a load of curveballs;
Phone calls

Your marriage takes a hit, a huge hit. It's tough at the best of times to find time for each other. It's tough to plan date nights, vacations and time to connect, because life is busy. We start to take each other for granted and become robotic like in our daily lives.

When Adele was born, I was a SAHM. This was my calling. I had the time to take care of my children. I had time to take Adele to appointments. I had time during the day to make phone calls and schedule therapy sessions. I was doing my job as a mother. 

I was gaining weight.
I was tossing and turning at night.
I was unsure if I was a fit for this job.

When Adele turned two, I decided that I needed to go back to work. I missed teaching terribly and my boss was willing to let me join the team and work part time, as this was all I felt I could handle. I needed adult conversation and I needed to feel valued. I also needed a pay cheque. I wanted out of our home, forget the memories of the flood and buy something bigger and better. This allowed us to do so many exciting things with the girls. 

Going back to work has given me an outlet, a time to talk to colleagues, laugh, eat teacher snacks and do what I love to do. It has also added an extra calendar in the house, schedules and routine have become even more important and I'm happy to say that it runs like a well-oiled machine.......when everybody is healthy, when there is no therapy, when we don't have appointments, when we don't have to book surgery, when we don't have extra-curricular.....

James and I are so invested in our children, that we have failed to work on our marriage. We don't communicate effectively. We don't take time to listen to each other. We plan meals. We plan swimming lessons. We look at the calendar and decide which one of us will take Adele to her next appointment at the hospital. We plan out which days he will take off for Adele's surgery and which days I will stay home. Consistency is imperative for Brinley. We need to get her to school on time, take her to swimming lessons and make sure that her schedule is not thrown off. Her world is just as important as Adele's world. 

James and I are two ships passing in the night. 

In the beginning, we said that we would work as a team. This is a partnership that we entered over eight years ago. We vowed that we would be in this together, for better or for worse. 

How did we get to this point?

We have allowed ourselves to get to this point. I blame us. I blame our lack of commitment. I blame my IUD. HA! HA! 

This parenting gig is tough. I knew the night we conceived Adele...yes, I know the night! We didn't know that this was going to be our journey. I didn't think about that things would not go as planned. I did not think about how much my life would be consumed by worry and fear.

I have let all of this interfere with my love for my husband. I have become a different woman. I have allowed others to dictate my happiness. When did all of this happen? When did I forget that I am a person too? When did I let go of who I am and my interests and my hopes and dreams? 

I am a part of the most amazing group on Facebook. All of the moms are medical mommas. They are the strongest warriors, they are incredible and they always have each other's backs. We laugh. We cry. We send each other vulgar messages. We talk about bedazzling vaginas. (This may save my marriage) We are real. Last night, one of the moms was sitting in emergency with her child.

This was her message:
He's been vomiting all day and can't keep anything down. Decreased output. Don't know if it's his kidneys or his gut....pseudo obstruction.
Well, on a positive side, we had a long run at home. Going to stay optimistic.
Just had a shitty emotional weekend and my body is saying eff you....I'm sore and I'm tired.

My response:
I like how you go from positive to shitty. You sound like the rest of us. We try to convince ourselves that it's all ok...we've got this and then two seconds later, we're all like....this fucking sucks and I want to cry and hurt someone. 

Her response:
Krista, you hit the nail on the head. Most days, we are strong warriors. We smile through everything, but today I am not strong.

Another dear friend told me recently that she talks to me about her son's health concerns because when she discusses issues with her husband, they fight. They can't see eye to eye. They are stressed.

A dear friend last week, had an emotional breakdown and she confided in me that her husband has nothing left to give. 

We all struggle because our feelings of intense love for our children become intertwined with frustrations, fears and total exhaustion. These feelings turn into arguments with our spouses. We become so upset, so engrossed in our own pity party, that we think our spouse just won't get it. Meanwhile, they are experiencing the same emotions.
I start to shut down when I feel that I can't handle anymore and in turn, this has placed a wedge in the marriage. 
If I am emotionally drained, I get snippy, I cry, I don't always reach out for support and then I push in down as far as it can go and then the cycle repeats itself.
I understand the value of taking care of yourself. I understand the importance of communication and I understand that keeping our family unit strong is of the upmost importance.

Date night will not fix our marriage. A weekend away will not fix our marriage. A lottery win will not fix our marriage, although it would pay for a top notch therapist in Bali.

James plays a vital role in this marriage. He continues to reassure me that he wants our marriage to survive, he says that he will do what is needed so that we can move forward, but James continues his robotic routine of getting up, going to work, texting and asking if I feel ok and then we talk about what we will have for dinner. 
Although he feels that he is making positive changes, I feel that he says what I want to hear and then the action part means nothing, it is stagnant. 

What is needed:
It is truly that simple. Communicate our fears and our worries. Communicate respectfully when we are frustrated. Stop retreating into myself. Be cognizant that the other person is also experiencing similar emotions. Access resources and community supports that will help guide us through this journey. Stop pretending that it's all ok.

It is going to take time. 

To my dear friends who are struggling, you are not alone. You will prevail. You will fucking rock this. You are a warrior. You are strong. You are scared. You are weak. You are frustrated. You are courageous. You are beautiful. You are capable. You are human. 

We hold each other's hands. We realize that we are not the Instagram life. We make mistakes. We fart in our sleep. We say the wrong things. We need to reach out when we need help. 

I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier.