This blog was originally published on March 20, 2012.
A beautiful sunset. The sky painted orange, pink and purple.
A red sand beach drawn along the shore in Nova Scotia.
Two young boys running…no, frolicking in the surf with the sky blazing behind them.
Waves are splashing at their feet.
Can you see it?
A dear friend of mine captured this beautiful moment near her home and when I saw the photograph it immediately made me think: RECOVERY. This is what it looks like. Those carefree boys were running, skipping, playing the evening away and emanating pure joy…this was the finish line in my mind.
Yeah right! Who the hell am I kidding? Back to reality. I have two sons. One of them does not have autism and he is a far cry from the perfection that oozes from that photograph. That scene described above is the Norman Rockwell picture of childhood and we all know that those small town paintings of his are a load of crap, right?
Well, perhaps I am being too hard on old Norman. He was a good egg. Back when he was painting the iconic American family, developmental delays were not the norm. You weren’t able to walk into a grocery store and see (at the very least) one kid on the spectrum. Classrooms were not filled with children with IEPs and kids didn’t have autism. Today the Rockwellian picture of chidhood is almost laughable when you consider the rate at which developmental delays in children are increasing. Asthma and food allergies are now accepted as part of childhood. Our kids are sick and struggling. So Norman, forgive me for scoffing at your life’s work. It is not personal.
But I digress. Let’s get back to the holy grail of the biomed quest. Recovery. Getting our sick kids well. What does it actually look like?
Parents of kids with autism actually want a lot of the things that parents of typical kids complain about on a regular basis. The everyday irritations that come with raising kids who are not on the spectrum are huge milestones for our kids that have autism. What most take for granted when it comes to ‘normal’ human development is shouted from the rooftops as a gain by autism moms and dads. Let me give you some examples of what I am talking about.
We want sibling rivalry. Nothing gives us more pleasure than to hear a completely typical, ridiculous fight over who should get the blue eraser and who should get the green one. It is like music to our ears. Once I watched my son with autism throw my other son down on the floor like a WWF wrestler on roids because he wouldn’t leave him alone. He had never stood his ground with his brother before despite being two years older. I grinned from ear to ear.
We want lying. Yes, you heard that correctly…we want our kids to lie. This is a huge developmental feat and often you will find celebrations taking place when one of our kids tells his first lie. My son is not supposed to bring silly bands to school because he will sit there and play with them to the point where he can’t focus on work or anything else for that matter. My hatred for silly bands knows no bounds, but he is truly in love with these wretched things. And he is always totally truthful about having them with him if someone asks. I would love for him to tell his teacher when she asks if he has any, “No I don’t know what you are talking about (as he stuffs silly bands deeper into his pocket.)” Come on buddy! LIE about it! Try to get away with something! Nothing would make me prouder.
We want friends. We are DESPERATE for our child to have a friend. We can’t wait to sit at home and worry about what our kids are doing while they are at the neighbor’s house. Heck, we’ll take the invitation to go the neighbor’s house. We yearn for our kids to not shut up and be annoying about asking to invite 15 kids to their birthday party instead of 10. Most of us would settle for them wanting to invite one kid to their party. Many of us just want them to want a party in the first place. Oh yes…we wish on every star for them to have friends. Even the bad influence friends. Mail order? I’d consider it. We’ll take the friends however we can get them.
Our appreciation for every single tiny inch forward in development is something to behold. We will embrace any and all forward progress and cheer our kids on with everything we’ve got. If you have a child with autism, you completely understand what I am talking about. If you don’t, please go watch your typical kids with new eyes and savor one moment of awfulness that we are so desperately working toward. When your kid won’t stop talking and you want to yell, “Can you SHUT UP!” stop for a second and smile at the beautiful, social creature before you…no matter how irritating the non-stop talk is. Smile inside at that lie (who cares who wrote on the wall?) When you watch your child run off with his or her friend take a deep satisfying breath even if you can’t stand the sight of the other kid. It is good stuff.
Now, that is not to say that you should get all bad parenty and lackadaisical on us. NO WAY. Nip that lying in the bud! Teach your kids about choosing friends wisely, they need that skill well into adulthood. By all means lock yourself in the bathroom with the water running when you need to get away from the non-stop talker. We understand! We have typical kids along with our kids with autism. Let’s face facts…kids can be annoying. Often. But please, embrace one minute of the madness for us. We are working so hard to get there.
So what about this photograph? Who were these perfect, Stepford children? That picture was one still frame from the day, and I am going out on a limb here but…I’m guessing those kids weren’t frolicking. I’m betting the older brother took the younger brother’s shovel because he destroyed his sandcastle. The younger brother was screaming and chasing him down the beach trying desperately to get it back. The parents were packing up and yelling at the kids, pleading for them to come back to the blanket to get their shoes because it was almost dark and they still hadn’t had dinner. You know someone got stung by a jellyfish. I am putting my money on mom losing her favorite pair of sunglasses in the ocean. Dinner was gonna be pizza because it was too late to cook. There would be beer (lots of it) for mom and dad who deserved it after a day of dealing with the kids at the beach. No one had to take any digestive enzymes with dinner despite the gluten/casein filled meal, and the boys would sleep though the night without melatonin.
Sounds pretty damn good to me. I don’t need Norman Rockwell. I want reality. Recovery…I am ready for you. ☼
~Sunshine
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My partially recovered son lies absolutely nonstop now, not one single thing he tells me about school is the truth. Often I believe his lies and sound like a fool when I cross check with his teacher or other parents. And people say ‘aren’t you worried that he lies all the time?’. And I say ‘nope, it’s a development stage’. Maybe he’s hitting this development stage later than his peers but do I care?
And my (so far so good) NT daughter fights with her friends, yells like a banshee at people, and won’t share with anyone … and I look like the bad mother for hardly ever pulling her into line. But people don’t get that it’s such a breath of fresh air to have a child who does things typically. Her older brother would always give in and never fight, fighting would involve engaging with someone and he was too busy avoiding people.
So your post makes loads of sense to me. And I like the Norman Rockwell comparison too. Well done.
Thank you! You are speaking my thoughts and prayers today!
Me too! Love, love, love this!!!
Just great!
loved this post….tears….love!!!
I remember inwardly cheering when I realized that I really wanted to tell my formerly-apraxic little boy, to just shut up a minute! But lying… all I can say is, be careful what you wish for, my friend.
I know, I know…once the flood gates are open, right?
I love this!
Sunshine you put it beautifully. What I find most upsetting is when parents of neurotypical children complain about the very things in their children that we are striving for with our kids with Autism. And they’re complaining about it to me, the Mother of a disabled child and a non disabled child. Some people can be so insensitive. It’s like they are crying poverty with one loaf of bread under each arm. They’re looking at me as if they want me to console them. Sorry it’s not going to happen. I know part of their world because of my neurotypical son. My non disabled son at times has driven us crazy, but I know that society, peer pressure, guiding and good parenting will bring him along. He will grow up and find a life of his own. My disabled guy we yearn for those normal problems.
We are ready too. Can’t wait for the day! Great blog
Yes, please! Recovery, we are so ready for you!
Unfortunately, reality for many of our children has not involved complete recovery, despite our many long years of toiling and tons of $$$$ working toward that goal. As my son’s 16th birthday rapidly approaches in 2 more weeks, the reality for us is that there is no driver’s permit, no dating, no prom, no college applications and no empty nest anywhere in our foreseeable future. While surrounded by other parents of high school kids, listening to them muse about these things, my heart aches tremendously for my son. A few years ago, it ached for his lost childhood and now it continues to ache for his lost adolescence. (Oh, and by the way, we’re still waiting for the sibling rivalry, lying and friends.) It has been a long, painful journey of missed milestones and missing the boy who came into this world healthy and whole . . . we want him back desperately, which is why, after all these years, we continue to toil away working toward every smidgen of recovery he can achieve. I’m sure many would call us crazy and delusional at this point, but we are ALWAYS keeping hope alive no matter how many birthdays pass for our son.
Susan, I completely get where you are coming from. While we are not quite as far along in the journey as you are, my son will be 9 in a few weeks, we are still working tirelessly. We scrape, and claw, and battle our way toward every gain and every ounce of recovery. I love what you wrote, “I’m sure many would call us crazy and delusional at this point, but we are ALWAYS keeping hope alive no matter how many birthdays pass for our son.” I don’t think you are delusional…you are a warrior. Keep up the fight. I will too.
Love your post! I always secretly cheer in those rare instances when my ASD son has had it from his little brother’s pestering and pushes him away!
Recovery…we can smell it from here! Awesome post, Sunshine, and I promise not to yell today when my kids fight. PROMISE!
I can’t promise that I won’t yell at my kids when they fight today 🙂
BIG LARGE HUGE helping of reality PUUULEEEEZZZZZZZ!!!!
Love ya, Tex!