How to talk to kids about Autism…the triumphant Cub Scout story

I was so excited when Justin turned eight years old last year because it meant he could be a cub scout!!  I went out and bought him a full uniform—all the time hearing a voice in the back of my mind saying, “yeah, you can give it a try, but it’s probably not going to work.”  I hoped that voice wasn’t true, but past experiences at church had proven disastrous.

Within a week I got an email from the cub master asking my husband and me if we would speak at the next Pack Meeting which was going to focus on Special Needs and if we could introduce Autism and Justin to the pack.  What a great idea!!  I really hadn’t thought of doing something like that since Justin “went” to church with these same boys—but he really didn’t stay at church when he was there so a lot of these boys might not really understand why that is hard for Justin.  I told him we would, to which my husband said, “you know that means it is just you, right?  You’ll do a great job, and I won’t say it like you.  I’ll watch Justin while you talk.”

I started searching on the Internet to see if there were some good explanations of Autism for kids and after a very long search and not knowing where to even begin with my introduction, I found this website.  This mom did a great job of explaining autism in a way that kids could understand.  I used her example of “pins and needles” to explain sensory issues for Justin and then came up with some other things on my own that related specifically to Justin.

The pack meeting went really well and I was really surprised how many adults told me later that there kids brought up other kids they knew who must have had Autism like Justin too!!

Before we drove out to our family reunion, I sent my cub scout autism introduction talk to my husband’s family (who some of them had never met Justin, and others it had been over 3 years) so they could share it with their kids and talk Autism before we got there.  I think it helped prepare them and it never ceases to amaze me how team oriented kids can be for a good cause!!  They were so accepting of Justin!!

I have decided to post my introduction in case it benefits anyone else in understanding Autism.  I am in no way proclaiming to be an expert in Autism, or explaining it…I’ve just had many wonderful conversations about Autism from sharing this introduction:)

We are so excited to be here tonight for Justin’s first Pack Meeting. As Justin’s parents, we were given the opportunity to spotlight him so that everyone can get to know him a little better.

How many of you have ever broken your arm or leg and had to wear a cast? And for those who haven’t personally broken an arm or leg, you probably know someone who has, right? And you know just by looking at someone with a cast that there are certain limitations or things that they can’t do. You can’t go swimming when you have a cast, right? And can someone with a cast on their leg run a race?? Well, they might not be able to run a race, but they could walk the race, couldn’t they?? They’d just have to go a little bit slower to finish. I’m going to talk to you about some of Justin’s limitations that you can’t see like a cast, because it affects how his brain reacts to situations.

Justin has something called Autism. How many of you have heard the word Autism before??Autism is a condition that makes Justin’s brain react differently than other people his own age. When you look at Justin, he looks just like any other boy his age on the outside, and it would probably take you a few minutes to realize that he’s a little bit different because of his Autism. I’m going to tell you a little bit about how we found out Justin had Autism because it’s not something that he was born with, and it’s not something that you can “catch” from someone like a cold, or strep throat. It’s not contagious.

I bet a lot of you can’t remember some of the things you did when you were a baby, but I bet they were similar to the things that Justin did as a baby. He used to play peek-a-boo, and loved playing with all different kinds of toys, and loved making baby noises. Just before Justin turned two years old, he started to play differently and he didn’t want to look at us anymore or play peek-a-boo, and he started to cry more, and not try to talk any more, and he just seemed really frustrated. We took him to some doctors to try to find out what was wrong, and eventually we found out he had Autism.

There is a really important part of our brain that helps control our reactions to situations and this special part of Justin’s brain just doesn’t work quite right. I’m going to share with you some examples of how this makes Justin feel inside.

Here’s the first example: When you are sitting at school and you are in the middle of taking test, your brain does a wonderful thing in that it will help you not focus on the sounds of your breathing, or the ticking of the clock on the wall, or the sound of the air-conditioning blowing in the room—it helps tune all of that out and lets you concentrate on your test. You probably don’t even think about those other things going on around you because that’s how well your brain is helping you focus on your test!! For Justin, his brain doesn’t know what things are most important to focus on, and so he might hear the clock so loud that it sounds to him like he is in a football stadium with the loud speaker blaring!! Because of that sensitivity to noises, Justin will plug his ears a lot to tune noises out, or just in anticipating that there is more noise coming. That is also one of the reasons why if you walk up to Justin and try talking to him, he might walk right past you. It doesn’t mean you are bothering him, or that he doesn’t like you, but it just means that his brain isn’t letting him focus right then. He does this to me, and his dad and siblings all the time, and we just keep trying to talk to him because you might be surprised that the very next time you talk to him he will make eye contact and interact with you.

Here’s the second example: Have any of you ever sat for a long time or laid funny when you went to sleep and had your arms or legs fall asleep?? Have you ever had that “pins and needles” feeling?? Your brain sends you a message when that happens, to get up and walk around or shake your arms and get the blood flowing again. Justin’s brain is different, in that it sends him messages all day long that he has that “pins and needles” feeling all over his body. Sometimes, he even feels it in his head. So how does Justin handle that message?? When Justin feels that funny feeling, he has to get up and move around to try to get rid of it. That’s why sometimes at church I bet you’ve seen Justin’s dad walking him around the chapel, he does this to help Justin get rid of that feeling so he can come sit down again.

The other most frustrating challenge for Justin is that his brain forms sentences to talk, but it won’t tell his mouth how to form to say the words. So he physically can’t make his mouth say what his mind wants to say. I can imagine that Justin has a lot of things he would like to say to us!  Sometimes he gets so frustrated that he cries. You don’t have to worry when Justin cries because his dad will be with him and do whatever he can to quickly make him happy again so he’s not frustrated. Justin does have a new iPad program that helps him talk and I’m sure he and his dad would love to show it to you.  This helps Justin not be so frustrated.

Even though Justin’s brain doesn’t send him the right signals to react to different situations, we try to help train his brain so that it can learn to react better. Justin goes to a special clinic everyday where he has a therapist with him all the time teaching him different ways to cope with situations and react appropriately. He spends 6 hours a day doing this, just like you all spend 6 hours a day learning at school. Justin won’t ever grow out of his Autism, it is something he will have to cope with his whole life, but we as his parents and with the help of his therapists have great hope for him that he will be able to be happy and be able to go to his Primary class someday and not be frustrated, and go to school again someday. Justin starting cub scouts is a great opportunity for him to learn how to react to things in a really fun environment, because I know you all have a great time in cub scouts. He will have his dad with him to help teach him what to do, and we know that he will love making friends with all of you and interacting with you. How many of you like cars? Justin does too and he is going to love the pinewood derby! He loves making things with his hands.

We know that as you welcome Justin to your troop, you will get to know his infectious personality that we have been so blessed with in our family, and that you will love him like we do.

I have to admit that the day of the Pack Meeting I had a little cry-fest with my sister-in-law.  She has four typical boys, and she is a huge support to me!  I was so worried about saying the right things that night, and she let me read it to her over the phone and helped me with editing—Thanks Elaina!!

Scouting has been a success for us and I will never forget the kindness of the boys in Justin’s troop.