Hockey is the New RDI

Nadiene is the mother of two children: Lincoln, who is a nine-year-old boy with autism and his 8-year-old sister Charlie.  In 2011 she and her husband Jay participated in the Relate program at the Rehabilitation Centre for Children, which was then a pilot project.  She wrote about that experience here.

We wanted to hear from her again, now that their family’s time in Relationship Development Intervention (RDI) therapy has ended.  Parenting can be very demanding when children are little.  But does time spent in RDI have an impact on parenting later in childhood?  What is life like now that her son has moved into elementary school?

The following interview has been edited for clarity.

Let’s start with talking a bit about the beginning…. What did you first notice about your son?

It feels like forever ago, how’d we even survive those first few months?

I don’t know if I noticed right away. I guess because of my daughter, she’s wasn’t even a year and half and as she’s growing, she’s passing him in things.  She was just this little tiny peanut…. But also exceptional in her language and her social skills. She was one and she was doing these things that he wasn’t doing yet and he was two and a half. His language was pretty much non- existent but she would talk and play all the time.

I felt like it was my fault. Once we got into RDI and did Floortime I was like wow, I didn’t do any of those things right, because you’re pregnant and you’re exhausted, and you have two babies, so you’re double exhausted and I would just do everything for him. We didn’t sit around all day and talk to each other, it was me doing everything and him listening to me.

He liked the colourful TV. He would play toys, but not really with any purpose. We almost never played together. Jay played with him, Dads are fun, so Dad would come in and do fun things.  They would play blocks or go to the park.

So what led you to RDI?

We went to the after-diagnoses appointment and they filled us in on what our options were. It was overwhelming and none of it seemed like enough. I was really sad and after my week of sadness was over I just got out there and I talked to everybody who would talk to me, and never shut up, and just kept talking to people and trying to know everything I could about autism.

We started out in Autism Outreach. I was on the waitlist. Then I was looking at the Rehabilitation Centre for Children website and saw the Relate study, and called.  

They needed non-verbal kids, and the siblings couldn’t be younger than one year old. Charlie had just turned one, so it was perfect.

What was the program like?

It was one year.  When we started that I also hired our speech therapist too.  I knew we were on the wait list for speech therapy,  but the more I heard about speech therapy, I realized someone coming to your house once a month was not going to be enough. So our private speech therapist came every week for a year.  Paying for the help we needed wasn’t cheap. So I re-financed my mortgage to pay her. RDI started at the same time speech started. I’m hands on, so to have someone else teach your kid made no sense.  It makes sense for me to know how to handle my own kid, and how to teach my own kid.

They starting by doing an assessment on him.  And then… she talked about what was missing.  She went back to what he was missing from that first year of his life – he didn’t have it all figured out, even though he was 2 ½ or almost 3. So we started somewhere back there.

I still have the videos, I still watch them sometimes. We started with playing a lot of farm. It sounds so silly!  My husband was always so much better at those videos than me. It was always more natural for him to do that stuff.

We started with pretty much getting him interested in playing with us, showing him that having relationships was a fun thing to do. You know, if we play together we’re going to have a good time, we’re going to share, we’re going to take turns and we’re going to enjoy each other’s company.

He could be perfectly content just sitting in front of the TV or playing by himself, but clearly he had that part figured out, so I think he just needed the relationship part. And because I’m an attachment parent it just seemed more natural. I swear every video you could seem him doing more, getting better and being happier. So those videos just evolved, and our relationship just evolved.

So tell me about now. How’s he doing now?

He is doing well. He does a great job at school and does well in sports. We have challenges with communication and that affects some relationships. He also avoids all conflict because it makes him very uncomfortable.  My sister likes hanging with Lincoln because he’s easy going, fun, and funny, and he knows what meaningful relationships are. He is very happy guy.

So is he cured?

No! (laughs).  Do we even believe that?  We don’t, okay.

In his hockey playing. I can tell he has autism,  his teachers can tell, I’m sure his grandparents can tell – but everything he does out therein the ice makes me feel so proud. He thinks about the game differently and it doesn’t make him a bad hockey player, or a better hockey player, it just makes him a different hockey player. Clearly I’m his biggest fan – I think that once he progresses more with the relationship part of it that he will be an excellent hockey player because of being different.

When he is out there playing hockey, it starts with all the kids chasing the puck. So at the start of the season, it’s only their second year, there’s a lot of puck chasers. He is always strategically picking up the game, he’s standing on the line, waiting, because he knows, this is where the play is going to go. He’s always thinking ahead to be better at the game. Whereas the other kids can’t process that yet.  It’s more natural for them to go after the puck.

What makes playing hockey our new RDI is he gets to be a team player, there’s a social part to it. It’s very social and they spend a couple days a week together. He has a group of boys that he needs to make friends with to make this team the best it can be. He has to listen to his coaches, he has to show up on those -30 freezing cold nights – because he made a promise. Hockey is a fast paced and very dynamic game. I want him to grow up to be a man who can take instructions, work hard and be happy. Playing hockey and learning these skills will help with that.

We were so lucky to have these amazing people teach him. And the kids he plays with are also amazing. They made it to their championship this year and they lost because a kid on their team scored on their own net. They didn’t care. They were just happy to be there, they were grateful and high fiving each other. They were just happy. That’s exactly the kind of person that I was hoping to raise.

What are the challenges now?

He’s still shy and has some challenges communicating everything he needs to. But his teacher told me everybody likes him and he likes everybody. He is just starting to build some good relationships with some really nice kids. It is wonderful to watch him get to a point where he can have some friendships that aren’t initiated by myself.

I don’t know if he’s ready for a best friend. I do think that he’s accepted and understood. I didn’t start the hockey season being ‘hey, my kid has autism.’ I just kind of threw him in there. Not that I’m embarrassed or anything, just that, if I want him to fit in, and be all of those things – comfortable and hard working – I don’t want him to be treated any different than every other kid that is learning to be comfortable and hard working.

You’re trying to help him succeed on his own terms I think. Is that it?

Yeah, for sure.

And there’s definitely times when he’s not as engaged. His brain gets a little stuck. Somethings going on in there – he can’t focus. But I don’t want to tell people ‘hey my kid has autism, you have to accept this.’ I want us to work him through it, so that next time it improves and he can focus better.

I want that bar to be in the exact same place that it is for every other kid. Because, he’s capable. We just need some more time. I don’t know how we’ll fix his brain getting stuck. We are currently considering going back to see an RDI consultant to see if we can work through this issue.

His school knows he has autism, but I think in those other settings that he needs to figure out how he is gonna fit in. Without being “hey, I have autism”. Because people lack enough education on what the spectrum is.  And honestly most people don’t know what I’m talking about when I talk about his challenges.

Maybe as he gets older he’ll need more understanding, but, somehow, I think as long as that expectation can stay whatever it is for every other child then why would we not want that?

I don’t go around town saying I love autism so much. But I love that I have come to this place where I’m fairly confident and happy. And I like that he has this and still does these amazing things. It doesn’t have to be a catastrophe.

There’s still some communication barriers.

When other people talk about his communication they always say polite things about how it’s because he is a boy or because it’s his personality but it’s more than that. It shouldn’t be physically painful to have a back and forth conversation.  If you were talking to him he’d be under the table. He needs to leave. Fight or flight – definitely flight.

I know sometimes that he gets left out because of that. He has the kindest heart, and he’s super loyal. If something happens at school, and I’ll be “‘well who did that?” he’ll be “I don’t know” because he doesn’t want that person to get into trouble. Because of those communication challenges he definitely gets left behind sometimes. I also feel like people don’t get to know who he truly is because of it.

Does he get jokes?

No, Charlie’s hilarious. But he’s not good at sarcasm.

Jokes in general are hard. Because he’s not understanding something can mean two things at once.

Yeah so he – is not quite there.

What has his reading been like?

His reading’s actually good. Math – that’s a strength, math and science. His reading is where it needs to be. You can’t get to be the best at everything. So for now it is acceptable, he’s great at math and science. I think you take it and be happy with that.

So, after that year of RDI and speech…

We were exhausted.  Our speech therapist said she said that she didn’t feel that there was anything else that we could do together.  So at the end of that year he was talking well enough for everyone to be able to understand him.

And at the beginning of that year he wasn’t really talking at all.

No. He wasn’t really talking but his speech was mostly appropriate, and it made sense.

So no echolalia?

No. Which as you know, she was impressed with him. So even though it was delayed, when it progressed it was appropriate.

That makes a huge difference.

And at 100 bucks an hour.  $5200 a year! It was worth it.

That’s a lot of money.

You know, he did RDI, he’s in speech, and we put him in a daycare centre where he got to have a worker with him all the time.  She was not trained, but she grew up with a brother who had autism. So we were just the luckiest people on the face of the earth to have her work with our child.

Because you had a team, and all of the parts of the team were working really well.

Yes. If he wouldn’t have been with Nola, if we would have gotten somebody else who wasn’t trained,and didn’t know anything about this and just was there to be there, it would have been completely different. He still loves her and has the best relationship with her. She’s still at our daycare. I couldn’t possibly be more grateful for her. Having the support of great people makes a huge difference.

Because even if that one piece would have been missing, it would have been so different. This was hard on both my husband and I. Some friendships, our marriage suffered a little. It’s actually surprising some days that we made it through that stuff. It’s amazing that we’re still married to each other and we still love each other! But I’m sure you know –  it’s really hard.

Well when we started RDI, Jay and I had a conversation about doing what we have to do even if it meant not doing anything else but helping Lincoln. We were too busy to go on dates, we didn’t  have any money to go on dates and we were tired. We pretty much put everything else on hold. Helping our son was the only thing that mattered. And that was the path I was on, and I probably hurt my husband along the way. But you are just trying to do the best you can with what you have. Looking back it’s easy to say I should have slowed down and taken some breaks along the way to live life and enjoy all the good things.

Because you’re talking about someone’s future. Your child’s future.

Exactly! He is my best buddy. I can’t not do everything I can to help him. I probably could have done that in a way that was still helping Lincoln, but let me be a good wife and mother, still not letting other relationships suffer.

But it’s hard to see that in that space.

It’s impossible. And really everybody’s just trying to do the right thing.

But now, therapy is just living our life. Hockey, school and I do make an effort to be in the community, talk to other moms, and find parents who are like minded. Because we need our therapy to just be our life. Because that’s what works best for us.  I’m not overwhelmed. I’m just living and I’m very proud of how far we have come.