Special needs

Our autism story: The tough decision we made

The LaBarbera hockey couple made the choice to live apart to help their son with autism get the best possible care.

Hockey family Jason, Ryder (6), Easton (3), and Kodette LaBarbera Hockey family Jason, Ryder (6), Easton (3), and Kodette LaBarbera

Being a hockey wife means being good at picking up and moving — a lot. It means helping my two boys get settled and happy in new places over and over. But one day in 2012, when we were living in Scottsdale, Ariz., while my husband Jason played for the Phoenix Coyotes, we received an email from the director of our son Ryder’s Montessori School. Ryder, then three, wasn’t “a good fit,” she said—there was “something wrong” with him, and he wasn’t allowed to return. We knew Ryder had some quirks, and a speech delay, but hadn’t thought too much of it. We certainly didn’t think he was much different from other kids his age.

Upset, hurt and confused, we met with a developmental specialist. After going through all the steps, we were told that Ryder had autism. Although it was great to have a diagnosis, we were completely overwhelmed. We were already working with a speech therapist, but we also needed to get him an occupational therapist and an Applied Behavioral Analysis (ABA) therapist, which had horrendous, discouraging wait lists. Fortunately, we found an occupational therapist who was an amazing fit and I decided to take a course in ABA myself while waiting for a therapist. I am so happy I did—I learned so much and gained a better understanding of autism. Finally, we connected with the best ABA therapist in Phoenix and Ryder’s therapy was underway.

The challenge was Jason’s hockey contract. We started working with the therapist in March, and that July, Jason signed with the Edmonton Oilers. I quickly found out that Ryder’s diagnosis in Phoenix didn’t fit the Alberta standards and they would need to re-do an assessment. The process was exhausting and included in-home visits and standing in front of a panel to explain why we needed services. And then, as soon as we were set up with therapists in Edmonton, Jason was traded to Chicago. Moving with him was out of the question, but staying in Edmonton wasn’t really a great option either—we had few friends or family there. We decided that it was best for the kids and I to return home to Calgary where we have more support, and because the move was inter-provincial, we could easily transfer the funding.

Once in Calgary, though, I had to start the process of getting on wait lists for therapists all over again. I remember one night after putting the kids to bed, just staring at the paperwork in front of me and breaking down. I couldn’t stop crying. We were wasting so much time always being in limbo. Ryder didn’t deserve this. I called Jason and we agreed the kids and I would stay in Calgary for the remainder of the season—and also the following one. It would be hard to be apart, but we needed to do whatever we could to help Ryder. Having a solid home base would do that for us. Soon after our decision, we were accepted into a specialized services school and into their home program. Ryder, now six, has been absolutely thriving. He loves his school and his therapists. It couldn’t have been a better fit. We are so proud of him and how far he has come: He now talks just for the sake of talking, speaking about everything he observes. He has gotten better about some of his rigidities (such as needing to drive home a certain way and how food is presented to him). His relationship with his three-year-old brother Easton has changed and they are now best friends. Their back and forth conversations are amazing to listen to!

The one remaining strain is Ryder’s relationship with Jason. He gets a bit shy and doesn’t know how to handle his emotions after not seeing his dad for long periods of time. It doesn’t take them long to pick up where they left off, but it’s hard on both of them. We are still working with Ryder on how to express his emotions, and letting him know that it’s OK to be happy to see his dad. It has also been hard on Jason not to be around the kids on a regular basis. It’s lonelier for Jason, whereas the boys keep me busy. He misses out on so much and it’s hard to fill him in on where Ryder is with therapy. But I love seeing Jason’s reaction to Ryder’s improvement—because I'm with him all the time, it’s harder for me to notice the big changes. As hard as it has been, we know we made the right decision. Ryder’s psychologist is confident that he won’t need as many services next year—so moving next year shouldn't be a problem and he’ll be able to attend a mainstream school. Of course, he has a lot of obstacles to overcome (as we all do!), but he is doing so well. We are looking forward to living as a family again this summer when Jason comes home, and then moving wherever hockey takes us.

Keep up with Kodette LaBarbera and her family on the W Network’s Hockey Wives.

This article was originally published on Apr 02, 2015

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