The Hood

When Nigel was very little, about two years old, he had a cute little fleece jacket with a “varsity” number on it. It also had a hood on it, and we noticed that he preferred to have the hood up whenever we left the house. When I learned that he had autism and that most of his meltdowns were sensory-related, I came to realize that the hood on his jacket helped to muffle many sounds that he was unable to filter. So as he got bigger, I bought him new fleece jackets with snug-fitting hoods. The one in the photo above is probably his third such jacket, and he was five years old.

He continued to wear his hooded jacket – always with the hood up – when he was in elementary school. The teachers allowed him to, although they encouraged him to remove it while he was in class. It didn’t really matter to me that he had the hood up inside; if it helped to muffle sounds that bothered him, then I felt he should be allowed to have it up. What I didn’t realize was that the elementary teachers were trying to prepare him for middle school.

At Nigel’s middle school, it is against school policy for any student to have their hood up or wear a hat on school grounds. And the noisy halls of that school is where a sound-muffler would be most needed. Whenever I go to pick him up from school, I sit in the foyer near the office to wait for him, and as soon as the bell rings and students begin pouring into the halls, the din is at such an intense level that I have no idea how Nigel manages it. I have suggested to him that he wear ear plugs or headphones in the halls, but he nixes that idea with his “I want to be like everybody else” refrain.

So he abides by the school rule and, every morning when I drop him off, as soon as he steps onto the school grounds, he sheds his hood and bravely walks into the building. I always like to look in my rear view mirror as I drive away, checking to see if anyone follows him to bother him. I used to see kids walk behind him and mimic him or flick him in the back of his neck to get a reaction out of him. He tells me that no one bothers him anymore, but I’m never sure because he has withheld information before because he doesn’t want me to worry. So I watch.

One day last week, I dropped him off and he got out of the car with his hood up, because he likes to wear it when we leave the house in the morning. As usual, he walked toward the entrance, and as soon as he was officially on school grounds, he slipped off his hood and continued on into the building. As I pulled away, I noticed three boys standing off to the side, watching him. They pointed at him and laughed. And then, as I slowly drove by them, one of them actually had the gall to look at my face while he was still laughing. He saw which car Nigel got out of, day after day. He knew damn well who he was looking at. And so, with adrenaline pumping through my veins and a lump stuck in my throat, I glared at him. I glared at that boy who dared to laugh at someone just because he wears a hood every morning, just because he does things a little differently.

And I drove to work with sobs catching in my throat because I realized that no matter what I do, no matter how many Circles of Friends I try to start, no matter how much I write about autism, no matter how much advocacy I do, there will always be people who will laugh at my son and his different ways. This is one of the things I grieve for – knowing that ignorant people won’t give my son the respect and dignity he deserves; they’ll laugh, or worse – harass him. And it burns me. I can be Zen-like about receiving the wrong school book, but not this. This is hurtful. And there is nothing I can do about it, nothing more than what I already do.    

This is one of the hard things about being the parent of a special needs child. No one wants their child, typical or not, to be laughed at. But we parents of special needs children deal with it on a regular basis. We do all we can to stop it, but it still happens. And we know it will continue to. I guess we just need to have the strength to do all we can – and the grace to realize that that’s all we can do. I don’t know. I’m not there yet. It still makes me angry and sad. And I think it always will.

24 thoughts on “The Hood

  1. Tera

    I’m so sorry, Tanya. It does hurt. If only those kids could live one day in Nigel’s shoes. ..
    Kaeden is also a hoodie junkie. IF it has a hood, it will be over his head, at least at some point throughout the day. I used to just think it was cute, how he always wore his hood even in the midst of summer, but now I know it’s his defense mechanism against the world. Good job Nigel, for putting aside your own needs to live by societal rules, yet again.

  2. Tera

    BTW, I discovered an autism center in Holland. They have created something called ‘the hoofdkwartier’ (head quarter). http://www.hoofdkwartier.org/pages/begin.htm
    This is in Dutch, but you can at least see the design of the presentation.
    It is a multi-media experience that gives people an idea of what people with autism live with. You wear headphones, walk into the multi-media head, and have an 8 minute presentation. From the reviews I’ve read, people are totally amazed at what autistic people ahve to deal with just from those few 8 minutes. The reaction is generally: Wow, if you ahd to live with that every day you’d be really tired.

    The head is having an exposition near us in June. I’m going…and sending off invites to everyone I know. Something like this could just be what we need to help others to understand our kids, and should be a requiement for all classmates to partake in in order to graduate. A little understanding goes a long way. I’ll get back to you about this AFTER I have experiences it myself. I am expecting to be blown away…

  3. Kat

    I have had similar encounters and they just cut me to the core. And I think how Movie Boy must have those same encounters every day, and how it must hurt. I’m sorry you both have to deal with such ignorance.

  4. pixiemama

    One day, as I was dropping Reilly off in his first grade classroom, another little boy called him “Foster.” I said, “This is Foster’s big brother, Reilly.” The boy replied, “well, they both walk funny.” He was just a little kid, maybe a Kindergartner. He wasn’t trying to be mean (I don’t think) and I STILL had the urge to pin him to the wall with my hands around his scrawny throat.

    It’s one of the many hard things.

    love.

  5. Alicia

    How did you contain yourself from not jumping out of the car and beating the snot out of that kid??? Or, perhaps just accidently almost running him over… i dont know how i will handle that stuff when the time comes… my daughter (in some ways luckily) goes to a school that is entirely comprised of children with lower functioning autism. In that was she is insulated from such things. Thank goodness for that bc i’d probably wind up in jail for reckless assault on a teenage jerk…

    keep up the good work of being a Mom!

  6. Fearless Females

    I know exactly how you feel.. the one advantage I think Nick has is that he has no social skills and a lower than average IQ, so he’s quiet and nobody has dared to pick on him..

    I would have walked right over to that kid’s face and glared at him… A fantasy of mine since Nick was a little boy, but never had to do it.

    Just think about it this way, the reality is that the kids who pick on our kids have low self-esteem and “huge” problems—it’s like they’re advertising their insecurities!

  7. Michelle S

    It’s hard, but you know that kid isn’t half the person that your son is! Would he not want to wear the hoodie?? bc you could totally write that into his IEP. . . I can’t seem to drive down the street without seeing kids that age with a hoodie up around their head! It doesn’t seem like it’d be so different!? Hang in there mama!

  8. Cathy

    thank you for writing this–it’s exactly how I feel about my son, whom has high-functioning autism. I worry so much about him being a target, and yet I have to let go. It’s awful.

  9. M

    ugh, painful to read about. if the bullies of the world could have even a fraction of nigel’s heart, spirit, this would be an infinitely better place to live.

    i’ve wondered how he is reacting to the social cliques that begin to get really intense around that time. bullying is terrible, but seeing groups form, coalesce, it can also be tough. he may see it and not care, but i was curious. anyway, i hope you’re well tanya.

  10. Sheri

    The hoodie and the angry mom….We struggle with the hoodie every year. I love when warmer temperatures get here because I can wash the latest in a long line of hoodies and hang them in the closet for a few months. Brenden’s other favorite is a military hat that has the little ear flaps that he can fold down over his ears. He just feels safe and hidden from the world this way.

    Other people’s children…what are you going to do with them? I have been known to follow them home before from the park. I have told them to their face that they are rude, mean and nasty but it still happens. Whether through their own insecurities of having to pick on others to make themselves feel important or just plan lack of parenting on their parent’s part to raise compassionate children, there will always be the kids (and even adults) who will do this. We had an “adult” man do it to Brenden at the zoo. I was infuriated but now I feel sorry for them to be in the dark about being loving to those around them.

  11. Michelle O'Neil

    Those boys in their disconnection are feeling as fearful as Nigel does. They are trying to hide it. I get that, and I have compassion, but that doesn’t stop the mama in me from wanting to get out of the car and teach them a thing or two. Trust me, they have shitty home lives, no self esteem, no self love at all. They are pathetic.

    Keep telling Nigel how beautiful he is.

  12. Pweshes Mama

    I’m so sorry you had to go through that and I admire your power to just glare back at the boy.. if it was me, I would’ve probably gone up to him to give a piece of my mind. But of course, people like him aren’t worth the time and effort. I know it’s easier said than done, but after what we go through every day with a special needs child and with how much they teach us, we just hv to remember that ignorant people like that boy are literally just ignorant and in that sense we should actually be feeling sorry for them. Of course, that still doesn’t take away the hurt that we feel. I hope you feel better about it soon.

    Ps. Nigel looks absolutely adorable in the pic. He truly is such a handsome boy!

  13. Carol

    It IS hurtful. My daughter, who is a few years older than J, used to observe in high school that it was the misfits themselves that made fun of special needs students, etc. She also felt that the majority of the students would never be that way (and she had a very sensitive radar when it came to the well being of kids that were different; partly because of her brother being autistic). But it still hurts.

  14. sylrayj

    I was one of the kids the others laughed at. I didn’t have friends, off and on, throughout my childhood. Now, I have a few good friends, and they are steadfast and supportive.

    It was tough when I was young, but now I am able to do without, instead of put up with ‘friends’ who belittle me or use me or have values that greatly differ from mine.

    I watch my son, following the same sort of path I did, and I see that he’s much like his mommy – no friends, not really, and he does get teased some (it’s a good thing we’re both rather oblivious, because we don’t notice a lot of it). I also see a preteen who isn’t being pressured by ‘buddies’ to grow up too fast, and who can manoeuvre online among good people his parents know, finding his place in the world.

    Thank you for caring, thank you for loving so much – thank you for being the biggest support right when it’s needed. Your boy will probably grow up to be a very wonderful man, because he can see what’s right every time he looks at his parents.

  15. Tanya Savko Post author

    Tera – That presentation sounds amazing. If more people were to experience that, surely it would make a difference. I can’t wait to hear about it!

    Michelle S – Unfortunately, the only thing we could write into his IEP would be wearing ear plugs or headphones in the halls, which he refuses to do because he doesn’t want to stand out. They say it wouldn’t be “fair” to the other kids for Nigel to be the only one allowed to have his hood up.

    M – I’m not sure yet what he’s picking up on as far as social cliques. Probably more than I realize, but not enough to fit in unfortunately.

    Sheri – It’s definitely worse when the “adults” do it! The ignorance!

    Carol – Your daughter’s probably right. Most students would never be that way. It’s a shame there are always the few that are.

    Sylrayj – Thanks so much for stopping by, and for your kind words.

  16. Nicki

    I know, it sucks. Some people are just jerks, and there’s just not much you can do to change it. Hopefully, the good work you do to be an advocate for your son and other kids will mean that they will be surrounded with more nice people and less jerks… but I’m sure there will just always be a few jerks. :(

  17. Joanie

    Oh, my. I know just how that feels, too. The way you write about it is a beautiful thing. You’ve captured those feelings so well. It is so hard when we can’t fight those battles for them. It is such a helpless feeling. Nigel is lucky to have such a wonderful and caring mom. Thank you for sharing. It really helps to know we are not alone in these experiences.

  18. john

    I just wrote about school issues with my son on my blog. My son also loved his hood up, I never really thought about it until you wrote your post.

  19. Alice

    I wanted to thank you for your website. I just stumbled onto it a few minutes ago. I am a 25 year old woman with Asperger’s Syndrome and a few other things. (Though I overlap into a few categories, I am only officially AS.) I found your thoughts insightful and gracious. Thank you for posting.

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