Uphill

In addition to meeting with Nigel’s new case manager last week and doing a walk-through at the high school, we had another reason for going there. Nigel needed to do a dry run of riding his bike to school.

Yes, despite past reactions to insects flying in his face, he wants to do this. And I need to let him. He has a fiercely independent spirit, which I think has served him well and will continue to. We have gone over safety concerns ad nauseam, and I think he’s ready. I have to trust that he can do this.

So, that afternoon on the way to the high school, he rode his bike and I waited a few minutes before following in the car. It’s only a mile to the school, but there are several stop signs and intersections along the way, and his job was to time himself so we would know what time he needs to leave the house in the mornings. I told him to ride at a normal pace, to stop at all the stop signs, and not try to hurry up if I passed him.

I pulled out of our driveway and drove to the first intersection and turned. There, about a hundred yards ahead of me, was Nigel on his bike, gesturing to three teenage girls as he rode past them. It looked like he was either giving them a thumbs-up or pointing ahead in the direction of the high school. I couldn’t tell what he was doing. But after he passed them and continued on, I could tell what they were doing. They were mimicking his gestures in an exaggerated manner. And laughing.

Unfortunately I have witnessed my son being laughed at many times. But because of that, I have learned how to respond in the most results-oriented way. I have lectured other kids, I have spoken angrily to them, I have glared at them. These reactions are instinctive. Of course, as parents, we are angry, we are incensed, at seeing our children disrespected in this manner. We want to lash out and make it right, even if our children weren’t aware of what happened at their expense. But what I have learned over the years is that if I approach the kids in an open, positive manner, most will respond much better than if I approach them with anger.

Nigel was at least 50 yards ahead and didn’t notice me pull up to the three girls. I rolled down my window, smiled, and asked if I could talk to them for a minute. “Do you know that boy on the bike who just rode by?” Two didn’t, one said she had seen him when she was at the middle school two years ago. I continued in a pleasant voice. “Well, I just thought you should know that he has autism, and he’s my son.” I could see a little embarrassment on their faces. “Ohhh,” they said, “he has autism? We didn’t know.” I was glad that they seemed to know what autism was. Years ago, when he was younger, people didn’t. “Yes,” I continued. “Most people don’t realize that, so I wanted to mention that to you. He’s going to be starting at the high school next week, so I just wanted to let you know in case you see him around. Sometimes people with autism have behavior that’s a little different; thanks for understanding.” “Okay,” they all said, and the older girl said, “Thanks for telling us.” I thanked them again and drove off.

On my last post, M of Incipient Turvy had mentioned the following in his comment:

I think the one thing people tend not to get (the general public, people not connected into autism issues) is the fact that every single step is uphill. There are no days you get to relax, not worry about it, coast on autopilot. If Nigel is in a public setting…and especially a highly social environment like school…every day requires vigilance, effort…it’s all uphill.

Even when we have successful meetings, when Nigel participates and advocates for himself, we never get to sit back and relax. Every day we contend with people who don’t understand, who might laugh at him, who might egg him on purposefully until he reacts in anger. These incidents will contribute to stress, self-esteem issues, and will definitely affect how well he does in school. It’s a constant battle. All uphill, just like M said.

And that’s why I talk to people every chance I get. It’s not easy for me, being an introvert, but it’s what must be done. That day, I talked to three girls. Three people. A drop in the bucket. But getting those three people on our side might make even a slight difference. And I’ll take it.

A few minutes later, I parked at the school near the bike rack. Nigel soon rode up, dismounted, and began locking his bike on the rack. I walked over. “Did you know those three girls back there?” I asked him. “No,” he said. “But they seemed nice.” “Yes,” I said. “I think they will be.”

20 thoughts on “Uphill

  1. Paulene Angela

    Tanya, I was with you all the way, explaining to those three girls. Absolutely we need as many helpers on our side as possible.

    I’ve even asked one of my neighbours boys (who really does not stop talking) if he could help Max with some conversation, as Max needs to speak much more. The little guy was delighted to help.

    I do get quite an interesting response when I say to other kids, “Can you help!” usually very positive.

  2. Kim

    I sometimes wonder if I should be telling as many people as I do about my son’s autism. If I should just let him be himself more and not try to explain him so much – but I want people to understand WHY he has some of the difficulties he has. I also have the awareness magnets on the back of my car. I have wondered if this would draw negative attention to him but reading your post reaffirms why I stuck those magnets on my car and why I toss out a few words about autism when he we are dealing in public. I want people to be aware. I want people to understand and then have some compassion in the future.
    That uphill analogy is spot on. That is what I try to convey to friends and family with typical children – but they do not have the same uphill experience and do not understand why I just can’t relax more.

  3. dynamite girl

    Ahhh the heartbreak in seeing someone mock your child, it hits so close to home. I never know how to handle these situations, (because I want to snap sometimes and scream Don’t you get how hard it is for him just to be here). I wish I could always react with such grace. I admit “normal” teenagers intimidate me. I wasn’t good at being a teenager and I don’t know how to interact with them now.

  4. nicki

    Did I ever tell you what an amazing kid I think Nigel is? I hope he will have a great time in high school, and that every jerk who is cruel to him is outnumbered by at least two good friends. There are lots of good kids who will love Nigel for who he is, if he manages to find them. I’ll be thinking of him tomorrow while he’s starting school!

  5. Corrie

    I agree, you spoke to these girls with grace. I also agree that they will probably be advocates for Nigel when they see others mocking him. And if not these girls, there will be other teens who’ll understand. Just think about all the siblings of recently diagnosed children growing up in the schools with our children.

    Does Nigel’s school have a “Buddy” program where popular kids with compassion are paired up with other kids who have different needs?

  6. mama edge

    M’s comment has been echoing in my head since I read it, too. It IS hard work, but what’s remarkable about you is that you make it so much easier for all of us by offering your sage example.

    Thank you.

  7. Jeff Deutsch

    Hello Tanya,

    That was an excellent response – and a good lesson in social skills for us Aspies!

    As the saying goes: A soft answer turneth away wrath.

    Keep up the good work!

    Jeff Deutsch

  8. jess wilson

    oh tanya – this will sound flip, but i assure you it’s not

    you

    are

    my

    hero

    certainly you are nigel’s, but mine too. i will remember this. always.

    thank you

  9. Maddy

    Yikes. I can’t even let my 11 year old ride her bike to school yet a while, and I certainly can’t imagine even thinking that far ahead for the others.

    You’re certainly right about how hard it is for introverts to speak up, well done you. I hope I can be as brave in the future.
    Best wishes

  10. Macrina

    well done! that took an incredible amount of restraint, and you turned it into a teachable moment, sounds like you handled it the best possible way, hopefully turning it into something positive.

  11. Bonnie Sayers

    Great job in practicing the ride to high school. Nick started 8th grade today, held back in 1st grade, thankfully by me. Anyway since this is last of the virtual academy I am searching for things to get him out there socially, thinking of swimming and tennis since they are nearby.

    Good job in talking to those girls.

  12. rhemashope

    Tanya, I have chills. Thank you for your example. So representative of a mother who does all she can to help and protect her child — going behind him and gracefully teaching others on his behalf and our behalf. I won’t forget this ever.

    You are a woman of grace, strength and wisdom and I’m so glad I get to learn from you.

  13. Tera

    i am a bit like dynamite girl. i don’t ever know how to react when it’s other teens i am dealing with. i can do adults and little kids, but those teens are very intimidating. the few times i have tried to explain autism to teens, i was shocked by their compassion and willingness to learn. maybe it’s time to climb out of my shell a bit further and learn from these same kids i’m trying to teach.

    thank you for being you.

  14. Brenda

    Hi, Tanya! I just found your website and I couldn’t stop reading! Wow. A lot of great information, great work, great words. You are an inspiration. I’ve barely started the journey. My son is 5 and he was diagnosed just 1 1/2 years ago. I’ve wondered … what will it be like? And I’ve just barely started having the experiences you describe like seeing girls pointing and staring. You are a pioneer and a model for those of us following in your footsteps. I cannot thank you enough for sharing. I’ve already learned so much from you.

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