We’re back from our summer blog break, and excited to bring you the inspiring story of our third superhero caregiver. Cindy has 5 kids, ranging in age from 8 to 19, and is a practicing physician. Her oldest, Marcus, was diagnosed with autism when he was a toddler. Since then, Cindy has become an expert at helping Marcus fit in with his peers and live as normal a life as possible. Today, she’s sharing her story with us, including tips and tricks to help parents who are just getting started on the autism parent journey.
N: Cindy, thanks for making the time for this! You’ve had a truly incredible experience working with Marcus for the past 19 years, and I think there’s a lot that parents starting out on the journey can learn from your story.
C: Of course. You know, I think with autism, the most important thing is managing the behavior – really trying to help shape a child’s behavior and make it more typical, so that they can fit in. The problem with autism is that what is cute or acceptable when you’re 5 years old is not acceptable later in life. You really are trying to encourage your child to fit in as much as possible. You don’t have time to sit around and see if it’s going to go away. You have to take the bull by the horns and get after it.
On behavior programs, and where to start
N: I know that you have many success stories from the behavior program that you’ve worked on with Marcus, and I’d love to hear a bit about that…but first, how do you know where to start?
C: I realized when he was young that I needed to prioritize basic life skills first. Like using a knife! I decided when he was 5 that he needed to learn to do it himself. We started with breakfast sausage and a butter knife – you can’t kill yourself with that! But he needed to learn how.
It depends on the skill, though. Marcus couldn’t tie shoes, at all, for the longest time. I couldn’t waste precious time on a skill that wasn’t really important – there are slip-on shoes! He was 6’3’ and size 15 before he learned how to tie shoes. We learned it because Dan, the swim coach, called me one day and said, “Marcus is going to North [High School], and he’s going to be on the swim team!” So we had him go to practice, and when he got out of the pool, he put on his shoes, and then he looked at Dan and said, “Tie.” It was the funniest thing – Dan had been working with Marcus for years. We went home that night and worked on tying his shoes.
For all of these skills, you really need to understand the behavioral technique. I mastered it when he was 7 or 8 years old. You need to be so consistent, so that your kid realizes that you mean what you say. Marcus absolutely trusts me, and now the reward is just a smile or a “good job”. He rarely needs a reward because he knows that he’s doing the right things after so much practice.
N: It’s all about the process.
C: Yes. He doesn’t even really need a behavior program right now, but there have been several times in the past year when his special ed teacher has told me that he’s been reading out loud in class, and it’s disruptive. I told the teacher that we would have it fixed by tomorrow. Then, Marcus and I sat down at the table, and we got out The Cat in the Hat, and he read it out loud. I told him to read the book in his head, but he didn’t understand what that meant. So, I held his lips together, and told him to read it. He understood that he would have to read it silently.
When he went back to school the next day, the teacher did the same thing with him once, and then he had it down – cured. That’s the behavioral technique.
We’ve done the same thing when his teacher called and said he was talking to himself during class and repeating things. We worked on the signal for being quiet – purse your lips, and put your finger up to them. Then, when the teacher was at the board, with chalk, he didn’t even have to turn around when Marcus was making noise. He just put his hand up to his mouth and pursed his lips, and Marcus would stop. The other aides thought it was magic!
The other funny thing is that these techniques work with normal kids too! If you give in every time your kid wants something, they won’t understand no. I still have a great relationship with Marcus – when he’s tired at school sometimes, he’ll say “I love Mommy”. I know he loves me, but he also trusts me. He knows that I mean what I tell him.
Every child, regardless of their level, is going to benefit from a behavior program. It has to be a real partnership between the parents and the educators who support them.
On working with schools
N: How has your experience been working with the schools, and how do you get the most out of it?
C: For me, I have a strong personality, so it’s been a little easier! (Laughs) But for anyone, the key is that nobody is going to know your child better than you do – even if you’re a working mother, you’re there in the evenings, weekends, you get them up in the morning. Because you know them, you have to figure out what’s going to work, and you need to tell the teachers – don’t be afraid to go to the school and tell them what works at home! They love that, and then you can get to the next level together. The schools want to help your kid, but they need some help from you to do it.
When Marcus was in 3rd grade, the class started doing two-digit multiplication. His teacher called me and told me about all of these methods: the lattice method, the estimation method…there were so many of them. I said you know what, I’ve been working on this with him, and we have our own method. I developed my own terminology and was consistent using it at home, and then they used that consistent language with Marcus in school. That’s the only way he would be able to learn it – you have to be consistent.
On consistency and family life
N: How do you maintain the consistency yourself? Obviously you have good and bad days, and it seems like it would be hard to carry on with the consistency without a break.
C: Honestly, I think you have to be good at ignoring. You have to ignore the bad, and encourage the good.
One of the things that’s really helpful is for parents to figure out: what are three things that your kids really love? There’s something that they’ll go to the ends of the Earth for…hugs, skittles, goldfish, whatever. Then, when they do something good, you reward them with the good stuff. And they don’t get it (the reward) when they have problematic behaviors. You keep it simple.
N: How do you ensure that Marcus is receiving consistent signals in a household with 4 other kids?
C: Having the siblings around is good and bad. You’d be amazed by how young kids are so innocent and willing to help – if you set the tone that this is our kid, he is part of our family, and this is what we’re doing, they can actually become the best models for him. The more normalcy Marcus is around, the better – it almost dilutes the autism a bit. He’s just one more kid in this family.
N: How has all of this affected your other kids?
C: I really do think Marcus has taught them just as much as they have taught him. If there’s ever a kid in the classroom who’s slower, or has just moved in, they pick my younger kids to sit next to them. They just have the patience, and they’ve been exposed to the idea that there are differences in abilities and it’s okay.
Lessons learned, and looking forward
N: How are things changing now that Marcus is getting older and becoming an adult?
C: Marcus has great work ethic, so he tends to have a place with everybody – he’s well liked. He also doesn’t talk too much, so he’s easy to be around. We’re looking to move him into an independent apartment when he’s 21.
N: What have you learned through this experience of raising Marcus?
C: You realize that although there are a lot of bad people in the world, but if you look hard enough, you’ll find a lot of good people. Piano teachers, swim coaches, camping buddies. One of our friends even came with us to a gala to help us out with the kids. There are a lot of good people out there who have helped us along the way. You wonder why they do, but they’re just good people.
It’s funny, when you start out with the diagnosis, you can feel like you’re on your own. But you’re not alone! 1 in every 68 kids has autism. If you look up the street, you’ll find someone else who is affected – your neighbor, your friend, your nephew, someone. If you look, you’ll find people who get you.
The other thing that you have to keep in mind as a parent with a disability is that there is always someone out there who is worse off than you, and there is always someone out there who is better off than you. I’ve found myself feeling envious of a mom whose kid was less disabled than mine – but I also know moms who have it worse. You just have to make the best of it!
We picked activities that he can do. He can ski and do individual sports – so we all ski! Camping is another one. I never imagined in a zillion years that I would be a camper, but Marcus could do camping. Those are two major activities that we now all do as a family, because we followed his lead – and it’s good for all of us. And Marc loves it because it’s something that he can do with Marcus when he’s older.
N: Are there any other words of wisdom that you’d like to share?
C: When your child is diagnosed with autism, you want to try behavior things first – it’s the most consistent thing, and it’s proven to work. Parents often go to medications too quickly, because they’re looking for a magic pill. The medications are fine, and they can help, but there’s no quick fix. You have to be in it to win it, for the long haul.
Having a behavior plan can be hard sometimes, but not having one is harder. What would I do right now, when he’s 190 pounds of muscle and 6’4”, if I didn’t have a behavior plan? You have to keep in mind that your little one is going to be an adult in 15 years, and you have to help him to be a functioning adult just like you would with any of the other kids.
Honestly, Rachel was saying last week, he’s not disabled, he has superpowers! He’s less annoying and moody than everyone else – it’s really unconditional love.