Harry’s brother G., my oldest at 6, is a really funny kid. Like, hysterical. He has been supplying me with funny facebook statuses ever since he could talk. I remember when he was 18 months old and noticed the shadow of his hand on the wall. He walked down the corridor smacking the wall with his hand yelling, “MY WALL! MY WALL!” very angrily at the shadow until the light shifted and the shadow disappeared. He gave a smug smile and a curt nod. He won that battle; the wall was his. When he finally potty trained at 3 ½, he was obsessed with peeing in anything but a toilet. We were stuck in the parking garage outside of Nordstrom with the two babies in the car and he insisted he had to pee right then. I let him, and he got back into the car saying, “I peed in a parking garage. I can check that off the list!” Um, do you even HAVE a list at three?
He finished Kindergarten in May and it was a LONG year. He was top of his class in reading and math, but was not as successful in keeping his mouth shut, and distracted many of his classmates throughout the day. His teacher told us numerous times that his saving grace was that she couldn’t stop laughing at the things he said. He might talk out of turn, but he was, at least, entertaining. He came home from school with a note one day that stated he needed to practice self-control, and needed to work on raising his hand before he spoke. When questioned, he threw major attitude back at me and said, “It’s YOUR fault!” When I asked why he said, “I’m supposed to be learning from YOU, and you never raise your hand, you always interrupt me, and you never wait your turn to talk.”
Touché.
The thing that made me most proud this last year was that his teacher told me he was always kind to his classmates. He was never mean and was always helpful, and he didn’t participate in name calling. We still haven’t had THE TALK about Harry’s autism with G.(though it’s high time we did), but he has heard a lot about what is and is not acceptable in terms of how we treat others. Right or wrong, I want to keep him innocent as long as I can. He knows that Harry goes to a special school that is helping him learn to speak, and has never really questioned beyond that. I just don’t want to lose that funny kid to the weight of today’s very serious issues.
G. was three when Harry was diagnosed, and we switched him from his (what now seems insanely) expensive school to a daycare that was more moderately priced so we could accommodate Harry’s rising costs. The new school was still great though, and I liked that the director had a background in special needs and that they were inclusive. He came home one day with scratches on his face saying that he didn’t like a kid named “Hunter” (yes, I changed the name). Seemed Hunter was really aggressive and wanted G. to play with him, but G. wanted to play with his buddy Aidan. I signed a boo-boo report at the front desk and talked to G. about how it wasn’t nice that Hunter scratched him but maybe to try to include Hunter when he played, and promptly forgot about it. (And if you think that is too nonchalant, remind me to tell you about G’s vampire phase at his old school sometime—the scratches were minor compared to the damage he inflicted. Karma.)
But the next week he had a bruise on his neck and when I questioned him he said that Hunter picked him up and choked him on the playground (I watched the video footage later—the teachers were right there and paying attention, it just happened really quickly). I flew into the director’s office, and she sat us down and explained that Hunter had autism. I softened. I mean, how could I be mad when Harry might cause this same situation at some point down the line? How would I want him to be treated? Could I discount G’s feelings at this point? He was now scared of Hunter’s unpredictability and he would not play with him because he knew he was going to get hurt. The director also explained that autism or not, safety had to be paramount and that similar things had happened to a few other kids in the class. They did not have the staff to work as closely as needed with Hunter on social skills, and his parents had opted to move to another facility that was better equipped to work with him one on one. Situation avoided.
This summer G. has been doing surf camp and he loves it. Especially skim boarding. After practicing every weekday at camp, he drags us all to the beach on the weekend so he can skim more. He doesn’t care that he falls, and when he wipes out he shouts, “FAIL!” at himself, gets back up and tries again. The camp was supposed to be a one week program, but G. insisted on going back each week, so at this point he knows all the lifeguards and counselors. They think he is funny and cute, and he gets a lot of attention because he is only six and works hard learning the sports.
I was away for a few days and my husband called Thursday to say G. was bullied at camp. Really? Bullied? Again, I tend to downplay, but my husband said he didn’t even want to go back—a 180 from the day before when the sun rose and set by surf camp. G said a big kid named “John” that was 11 kept following him shouting “FAIL!” whenever he fell. I wondered aloud what the difference was as G. shouts that all the time. He says it was different…not funny like they all say it. This kid is mean. And not only mean, but it seems, incessant. According to G., he kept following him yelling “fail”, picking on him for everything, telling him he sucked (Thanks John, by the way for that new household word. Sigh). G. said he left skimming to go by the surfboards to get away from him, but John followed him and did the same thing there. He finally told a guard, but it made it worse. I was really sad for G., and upset I wasn’t home to deal with the situation. I mean, he is only six and this kid is 11. John’s mom should know what happened.
My husband found the director Friday morning and guess what…
Say it with me people…
John has high-functioning autism.
Doesn’t excuse the behavior, but explains everything…G. fits in and knows everyone, this kid wants to, and I am guessing has some obsessive tendencies/OCD as well. My husband explains this to G. as best he can and John just happens to not go to camp that day…and it’s a one week program, so G. will not interact with him again. Situation avoided. Again.
But this situation will continue to happen because we continue to manufacture kids with autism at an alarming and astronomical rate. We’ve treated Harry’s medical issues aggressively and relentlessly, and incorporated all kinds of behavioral therapies into our program, and we are LUCKY that he is a mellow kid without, at this point, aggressive tendencies. I realize this is the flip side of what most special needs families deal with. Usually, it is the child with special needs that is teased, or tormented. In some ways, I was more prepared for that. How do I explain to G. that there are hundreds of kids in our area that may act just like Hunter and John? How do I explain that Harry has the same diagnosis? The innocence I have tried so hard to protect is merely a façade, created by me to avoid the conversation, because G. has already been affected by autism on many, many levels.
I wonder if this is how our parents felt when they needed to have the “How Babies are Made” talk, but I realize this is far, far worse. Our parents never had to explain the things I am about to explain to G. because back in the 80’s, this epidemic didn’t exist in their world. They knew no one with autism. Now, every grandparent knows someone who has a child with autism. They’ve had a steep learning curve too.
I am armed with Sunshine’s favourite book (watch the video here) and my own words to answer the questions of a six year old (and, inevitably, a 4 year old as R. doesn’t miss anything that goes on around here). And I suppose I’ll need to tell Harry too as his receptive language is quite intact. This makes me sad. He was supposed to be better by now. And we have come a long way, but he isn’t all better. He’s still pre-verbal. I am so angry that I have to have this conversation at all. I’m angry I have to tell my kids to stay off the grass because of pesticides. I’m angry that I can’t shop in a regular grocery store because most everything is genetically modified. I’m angry I can’t buy my kids the character pajamas they want because they are sprayed with toxic chemical fire retardants. I’m angry that the people I am supposed to trust to look out for our best interest are bought and paid for by mega corporations interested in profit over most everything else.
How do you deal with a bully that really isn’t a bully at all, but a child as sick as one of your own? The depths of compassion that our neuro-typical children will be expected to display will build character and awareness, but I am angry they will not even be entitled to their feelings…it is a lot to expect at a very young age and will change human dynamics for good and for bad. We demand that they accommodate-and they have to-but it is not without consequence. Indeed, the siblings of children with autism will change the world, but that change comes at a price.
I know many of you have stood where I now stand. How did you tell your neuro-typical children what happened to your child with autism? What do you wish you’d said? Thanks in advance for your words of advice.
Love,
~ Goddess xx
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Great post, Goddess. Thank you for putting it all into words.
First to address shattering the innocence of your younger children – They don’t know any different. This is the only way they know life to be, and they take their cues from you. If you are OK, then they are OK. This is their normal. My big brother was born with a genetic disease that made him sick his whole life. He required medication, therapy, hospitalizations, and different parenting than my sister and I did. That was just the way life was, and even though I realized that he was sick, until at least 2nd grade I didn’t really think that our family functioned all that differently than our friends and neighbors. Of course now, as an adult, I understand it all too well.
My 10yo boy has Asperger’s, with the accompanying aggression and lack of social skills. He was diagnosed 5 years ago, and within a couple of months of the diagnosis, we gave him the words to help him understand why he felt so angry, and why the other kids didn’t want to play with him, and why some things were just so hard for him. Once he had the words ‘Asperger’s Syndrome’, he took ownership of them. When he was ready, he asked questions about what it does and doesn’t mean. At times, those words seem to give him some comfort with the fact that he is different. While your son is pre-verbal and will not be able to ask you questions yet, just sharing the words and reducing their negative power may help. He doesn’t know any different. This is his normal.
My 5yo girl (so far neurotypical) has learned that sometimes she can play with her big brother and they have a great time together, and sometimes he is scary and she needs to stay away from him and/or get help. Just like when I was a child, she doesn’t know life any other way. We decided to make the words ‘autism’ and ‘asperger’s’ a part of our normal vocabulary, just as much as words about colors, feelings, play, and our faith. We normalized them – this is normal for our kids.
I wish you the best on your journey.
My NT child knows all about autism first hand. She’s recovered. SHE tells other kids about it.
Eloquent and oh so powerful. The siblings will change the world because they will have to.
Thank you.
How do you deal with a bully that really isn’t a bully at all, but a child as sick as your own? For me, it has been my son with ASD that has experienced what has been perceived as bully actions towards him from emotionally immature and ASD kids, although with 1 in 6 kids having a developmental delay of some sort, I am sure my NT son will experience it soon. My oldest son, who is almost indistinguishable at 10 years old had regressed into moderate/severe ASD at 17 months old and was probably once labelled the bully although he does not know his past. When he asks why he has to do neurological reorganization for vision or speech for articulation I tell him everyone has areas that could use improvement. Some people may need help with reading, some help with expressing emotions appropriately, some with knowing how to be a good friend, some with talking with encouraging words, some with not talking all the time… I tell him that some kids just haven’t developed the skills they need in all areas yet. I believe in Ross Greene’s mantra “Kids do well if they can” and share that with my boys. Sometimes my son comes home from school and says “Someone needs to tell Tommy’s parents that he needs to work on his impulse control skills!” As you eluded surfing John probably did not want to come across as mean when he yelled “Fail” and was trying to copy others as best as he could to try to fit in. I would have taught my son to say something like this: “When you say fail it sounds mean like this (give example) try more joking like this (give example)”. It may not work every time and I tell him he may need an adult to help intervene, but although it may be a lot to ask for a 10 year old, it gives him an understanding and productive way to respond.
Thank you so much for this post! My oldest is almost 7 and my youngest just turned 4… and I have been wondering how to tell my little one about his brother’s autism. We are vacationing at my parent’s home right now and my mother told me the other day that the double standards that I use on the boys isn’t fair. My oldest son hits, kicks, screams and bites when he is in meltdown mode and I soothe him to stop the madness. I would never allow my 4 year old to treat me this way. It isn’t fair. Autism isn’t fair. My little one started preschool last year so it’s only a matter of time before he realizes his brother’s behavior is different from his classmates. He is fiercely protective of his big brother so I know he will be my eyes/ears when they are in school together. I hate to shatter that innocence that he has right now, but would also love words of advice/book recommendations on how to broach the subject when the time comes.
This very much hits home. I live on a small island in the Puget Sound, and it seems autism is everywhere. I am part of a parents page for the island, with a little over 250 people, and I have seen close to 10 posts about how their child was recently diagnosed with Asperger’s, PDD, or Autism. A friend of mine has a son that is 13, and has both a TBI and Autism. He is a funny boy, smiling and happy, but OCD and has little to no comprehension of boundaries. I have to avoid outings with my son with HF autism, as he hyperstimulates him, and I can’t get him to focus and listen. There is also another boy, that Caeden knew from his early intervention class. Obvious to me, he had autism (though diagnosed about a year later), but also had aggressive tendencies (much of which I blame on him being EXTREMELY hyposensitive, he would throw himself into anything just to really *feel* it) but my son was hurt on quite a few playdates, as well as stimulated into behavior he never would have acted out otherwise.
The hardest part is for my oldest son. He is 15, while Caeden is 5 (no I am not an “old mom”–to fight the autism pseudo-cause stereotype– I just had my oldest too young), and he has the hardest time understanding what is “autism”, and what is “bad behavior.” Much of what is autism, I would never have let Ian get away with at a young age, and he feels I am too “soft” on Caeden–though he can’t argue with the results. When in a meltdown, do you offer the blanket to rub back and forth on his nose for instant stimming-soothiness, or put him in his room for, what in any other child would be bad behavior, an escalation of the meltdown. These double standards are hard to parent. Because Ian was older, he knew the entire time about the diagnosis, the treatments, and the challenges, but even so, it is HARD for him. He has come to loathe the other boys because of how they treat Caeden and the behavior they incite from him, but I have to remind him that how he feels about them, is how others may very well feel about his brother. He doesn’t like that at all.
This is just a terrible scenario for the 1 in 9 around the corner.
Wow! Fantastic blog. Although I don’t have a child with autism, your feelings are so much like mine. Especially the reasons you list for being angry!! Thanks so much for all you share. God bless!