In His Own World (and that’s right where he needs to be sometimes)

ninjalex

All the kids on my cul-de-sac are playing outside… all the kids except my youngest, who has Autism. At this point I know better than to make him go outside. In a bit I will, but he just got home from school and I know he needs time to decompress. Sometimes it breaks my heart to see him be so isolated, hear the joyful shrieks coming from outside while I watch him playing alone in the den, but I know that is about ME. At the moment it doesn’t bother HIM. I remind myself that this alone time is actually what he needs after a long, taxing day at school where he had to interact with people, navigate rules, struggle to pay attention, and constantly regulate his behavior. The problem is that what usually happens is in an hour or so after he has recharged his batteries he will suddenly decide he wants to go outside and see the other kids. Sadly, that tends to be when the other kids decide they are done and ready to go inside. And then he cries and cries, and I cry with him. So today, to avoid the inevitable tears, I will try to encourage him to go outside and play after allowing 30 minutes of down time. I just hope that the other kids are still out there.

It is so painful sometimes, watching my son interact, attempt to interact, or refuse to interact, with those other children. It’s not that I don’t love or accept him for who he is, but it hurts when I see him struggle. He has a dynamic personality (VERY not boring!), is a natural performer, and can be quite engaging. I want others to see that~ despite the fact that he is still working at learning social skills, handling frustration, and understanding that some bodily function jokes are NOT appropriate.  EVER. I am not writing about these things to say “poor me” or to paint Autism as a horrible thing. Autism has made my son wonderfully unique, but I am also trying to be real about the challenges that some children face in the hopes that others will be more understanding and patient. Let me give you an example: My son can be surprisingly sensitive, but sometimes in the heat of the moment he doesn’t realize that he is being too rough or too silly. He doesn’t always understand how his behavior can affect other people; he is just being himself and trying to have fun. His empathy has also gotten him into trouble at times because he has gotten too worked up when defending a friend that he perceived to be threatened. And since at first glance he looks and acts like everyone else people often don’t understand when he does have off moments. He may face retaliation, be dismissed, or ridiculed. I hold my breath the whole time he is outside, tensing at every sound he makes, worried that something will happen. I can’t tell you how many times recently he has come home from playing in the neighbors’ yards crying angry tears because he felt that all the other children were ganging up on him. What he didn’t realize, what I am trying to teach him, is that he often had a part in initiating the incident, either by playing too rough, having difficulty “understanding misunderstandings” (a phrase I learned during a bullying seminar by the VCU Autism Center for Excellence), or getting overly frustrated when he wasn’t winning a game. I made attempts to explain his personality to the other kids the best I can in an attempt to help them gain patience and understanding, even told them ways they can help him. I don’t know if it worked. Sometimes I think that by pointing out my son’s struggles it made things worse. I usually follow that up by reminding them of some of my son’s other great qualities so that he doesn’t seem so “other”. After all, “Different doesn’t mean bad, different just means different.

Peer relationships in school can be especially problematic. My son is “Twice-Exceptional” and educational needs would not be met in a self-contained special education classroom. His struggles are mostly social, attention and sensory-related. It wasn’t so bad last year, because in Kindergarten ALL the kids act silly. But as he has gotten older the social gap between him and his classmates has continued to widen. There are certain things that you can get away with in Kindergarten that are no longer acceptable in First Grade, and children are very perceptive. Yes, they have noticed that my son is creative and smart and funny, due in part to his eagerness to give presentations of his ideas in front of the class or even the whole school. But they have also started to label some of his behavior as strange, started to whisper, and even started to say some things out loud. For example, my son’s classmates have noticed that he has a habit of playing in the dirt at recess, making volcanoes or mudballs. It is a sensory-seeking, self-soothing behavior, and he likes the solitude and the feeling of the earth in his hands. But one day after he was done he attempted to go play with the other boys and was rebuffed. They told him to go away, and that playing in the dirt was weird and he should play in the sandbox at home. These kids are only in the First grade and they are already starting to be exclusionary. Gone are the sweet days of Kindergarten, when everyone plays with everyone. I only know about this because a friend happened to be volunteering at the school that day. Usually I am left to wonder what happens on a daily basis.

The other children have also noticed that my son is a total class-clown and has a flair for the dramatic (I confess, he takes after his mother). Sometimes it is viewed favorably by his classmates, sometimes with scorn. One day I was having lunch with my son at the school and he was being his typical larger-than-life self. A classmate asked him, “Why are you so crazy?” (I could tell that it was meant as both a compliment and a criticism). My son’s response, as he began to act even more silly, was “Autismmmm!” If only he had added jazz hands, his performance would have been complete. I was both amused and concerned, mostly because I wasn’t sure how the other children would react to that information. I gave a brief “Different doesn’t mean bad, different just means different” speech to them. Then I leaned over and reminded my son that Autism was no excuse to act as silly as he wanted and that he still had a choice to try to control his behavior.

There is one little girl in his class who is a dear friend and also his ally. Another student complained about my son to her and said that he was “Crazy in his head”. Where did that child learn to talk about people like that? Home? The dear girl fiercely defended him, saying, “I don’t care what you say, he is my FRIEND! He just has some trouble sometimes with his big feelings.” I wish my child could carry her around with him everywhere to help him navigate the difficult path of childhood relationships. Not that my son can’t defend himself, that’s not the problem. It just scares me so much, having him out there, vulnerable, often misunderstanding what is going on around him. Even worse are the times he understands all too well, feels hurt or frustrated, and has a difficult time coping with those negative feelings. I have felt at times like he is caught in between two worlds, not really fitting in with the special-needs world (a world in which we have many friends), yet struggling in the typical world. But then I watch him choose to play alone on a playground full of children and am reminded that quite often he simply inhabits his own little world. I respect that world, but I also want to help equip him with the tools that he needs to be out there in the Neurotypical world.

I didn’t intend for this to become about bullying. After all, my son’s struggles are not only with other people, but also within himself. But it does highlight the fact that bullying is a real problem, and one that I anticipate will be an increasing concern for us as my child ages. All children need to be taught to be more accepting of people who are different. Patience and kindness are learned behaviors that need to start at home. Did you know that, according to United States population statistics, every day 160,000 students miss school because they are so fearful of being bullied? Or that, in comparison to typically developing children, children with Asperger’s Syndrome are four times more likely to be the victims of bullies? (Source: Little, 2002) If you are interested in learning more, here is an illuminative article called “Why Autistic Children Are Bullied More“. After you read that article you might think that my personal examples weren’t THAT bad compared to many bullying instances, and you would be right. But they still cause us pain. And keep in mind that this is only in FIRST grade. It just gets worse as they get older.

On a side note, I worry every time I write such personal details about my son. I make it a point not to write about anything that would damage his reputation or embarrass him (Edited 5/13/2015: I now no longer share anything without his permission). One reason I shared all this is because the struggles he faces with relationships and isolation are something that I think we can all relate to on some level. So in that sense it is not so much personal as it is universal. Maybe by writing this I can help make the world a safer place for my son, and for all children. Maybe it will open people’s eyes and help make them more accepting and ACCOMMODATING.

In the time it took me to write this post my son decided on his own that he was ready to go outside. It’s a start…

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10 thoughts on “In His Own World (and that’s right where he needs to be sometimes)

  1. Ruth February 28, 2014 / 3:17 AM

    “Daily Mail” linked your blog to the article they wrote about your latest post.
    I’m glad they did. My heart felt heavy as I read this post. You described my 5 1/2year old little girl. She is having a really hard time socially at school. She is so smart and keeping up so well academically, no one notices her social struggles. She unravels once she is home. We have just started this journey and live in a small town with no resources. It is so comforting to read your words. Thank you so much for sharing.

    Like

    • Jen February 28, 2014 / 3:31 AM

      Hi Ruth, I am so glad to hear from you. It makes me feel like all the time I have spent sitting in front of a screen is worth it when I connect with other people. I am so sad to hear about your daughter’s struggles, it hurts so much as a parent to not be able to fix these things for them. I hope you are able to find a support system to help you both. It helped my son a lot in school when I talked to his classmates about it (“The Star”), that might be an option for you, too? Good luck, and best wishes.

      Like

  2. Jassmine March 20, 2014 / 3:49 AM

    Incredible article! You write so beautifully, captured me at every detail, and touched my heart!

    Regards
    Jassmine

    Like

  3. Krystyna March 21, 2014 / 10:13 AM

    Thank you, I have taken the liberty and used your words with changes that apply and posted on my facebook… suddenly people ask if my son id okay “He looks normal” which is so flustrating, I have spoken to children playing with him and one- ONE little girl is now more patient and more involved with him than the rest, I also leave Jakub to play and seeing hem crying becouse he cannot run fast enough or being calling names “crybaby” is haertbreaking… please forgive me for using your words but it was in the best intentions.. (i am not the best writer) Thank you Thank you Thank you . Krystyna Jakub’s age 8 mum .

    Like

  4. Ohana March 22, 2014 / 12:35 PM

    I somehow accidentally clicked into this post of yours (fate, I’m sure). After wiping my empathetic tears from my face, I forwarded the link to my husband. My husband asked if I had written it. Seriously, your post could have been in our cul de sac with our 8 yr old boy. Thank you so much for sharing…

    Like

  5. Chris March 26, 2014 / 1:23 AM

    After reading this it brought back so many memories of Kindergarten and 1st grade. At least he had Kindergarten to enjoy. Our son was a terror through Kindergarten to the point an Assistant AP said “I don’t know what to do anymore” as he was trying to jump off a desk and swing at her. By the time he was in 3rd grade the devastation had already taken effect and no one wanted to be around him. It pained me on a field trip once as he was playing tag with other kid but yet he was more than 20′ away from where the game was being played. He was glad when he moved to Fredericksburg and was given a new start by the school admin and the kids there. It hasn’t been easy but all the hard worked my wife and I poured in during the K-3 years with therapy and social skills classes are proving valuable. He still does not have many friends, but the ones he does have are mainly like him and have some type of disability or something going on. He is okay with being himself and his 2-3 friends. Thanks for sharing and I definitely feel your point of view.

    Like

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