It’s Autism Awareness Day. Facebook is covered with images and statements – “I love someone with autism!” “Light it up blue for autism!” “Autism is seeing the world differently!” As a mom with a kid somewhere on the spectrum, I should probably be jumping right in, but none of it feels like it really raises much awareness. We live in a time where, fortunately, you’d have to live under a rock to not know “autism.” Autism isn’t like a number of other conditions out there that are practically unknown. (CMV, anyone?) I’d venture to say it’s reached the same level that breast cancer has for awareness; everyone knows the name and knows we should raise awareness for it, but no one really knows how to help or what it’s like to live with until it affects one of their own.
So today, I’m going to open up a little about the truth of autism in our home. Autism is different for every person and every family, which is what makes it so hard to understand sometimes. In some families, autism shows itself in the form of strong obsessions or extreme disinterest, echoing everyone’s speech or not speaking at all, stim behaviors like spinning or hand flapping or biting or scratching or beating heads against the wall. We walk right down the middle – Danny is neither a high functioning Aspergers child nor a low functioning child with classic Autism. As in all things, he makes his own path.
For us, autism means spending a lot more time at home. Going out with Danny is hard. He wants very badly to be independent and a big kid, to walk and to explore. For Danny, though, exploring doesn’t mean going to the shelf right beside us and picking something up – it’s means running to the far end of the store and giggling as we chase him down. He does not want to stop, or slow, or look to see; if we go to a festival, he wants to be everywhere and yet does not want to pause anywhere. He has very little concept of “stay close,” he hates to hold hands, and he does not understand that if he takes off, he could get lost or hurt. I call him a free spirit, and while that brings to mind many positive things that are true, it also means that when I take him to my first Mom’s Club event in months, I have to keep a constant eye on him because he can and will just leave at any given moment; he will just slip out the door and be gone. Where most people take their kids to the zoo, the park, the indoor playground, I carefully calculate every trip for how likely he is to bolt, get over stimulated and melt down, or lose himself in the unallowed places (kitchens, back rooms, restrooms) because it’s too big for me to supervise him while still giving him freedom to play. I don’t stay home because I want to, necessarily – it’s just easier to.
For us, autism means accepting the unconventional. Mine is the child who, in a room full of kids playing games together, running and chasing and laughing and Simon-Saysing, is sitting in the corner with his back to the group playing a video game. For Danny, that’s his way of coping with a boisterous situation that is otherwise overwhelming him. Danny currently sleeps on a beanbag on the floor, 3 feet away from his untouched bed – but he sleeps (usually), and a lot of children with autism struggle with that, so we go with it. There are dozens of little tweaks on “typical” that we make and embrace because they help Danny deal with situations better. We alter situations, holidays, traditions, to help him fit in – walking him through an Easter Egg hunt to help him keep focused on what’s going on, bringing a belted booster seat to restaurants so he has help staying seated, keeping every door in the house locked so he doesn’t just leave at some point. We do some odd things, but we do what works to make it a little easier on us all and to give Danny a more comfortable, enjoyable environment.
For us, autism means constantly trying to strike a balance. We try to balance between his needs and our other kids’ – there are so many things Eric wants to do that just…wouldn’t work with Danny. Sometimes, we try to take him and just go for a shorter time; other times, we split up. Honestly, a lot of the time these days, Dad and Eric and going off to do the awesome fun kid stuff while I stay home with Danny and Andrew. Would we like to go sledding, or swimming, or any number of other things all as a family? Absolutely. But that isn’t really a viable option. In reality, we’d be forcing Danny to do something he really doesn’t care to do, and it would end in a fight – and in us having to cut it short, denying Eric the opportunity to fully enjoy it too. As much as autism impacts our life, it impacts Eric’s too, and will someday impact Andrew’s. We don’t want them living a life filled with “sorry, but your brother…” situations. Eric is wonderful about understanding when I explain that we can’t do something because of Danny, but I try to limit that as much as possible, because it just isn’t fair to him.
For us, autism means a melt down is always right around the corner. Danny can be happy one moment and all out crushed the next. Something as simple as an app on the iPod taking longer than normal to open can lead to screaming and crying. He can be walking through a store right beside us one moment and having to be dragged along, screaming in despair, the next. We can somewhat predict what will set him off – but not always, and what sets him off one day will be totally manageable the next…and then back to setting him off the day after that. His capacity for handling things changes quickly and frequently, and we don’t know what kind of day it’s going to be until it happens. He feels so much more strongly, it seems, and there is no filter on it.
For us, autism means changing diapers 5 years later because our son CAN use the toilet, he just doesn’t care if he’s sitting in pee and poop and sees no reason to interrupt what he’s doing…and no amount of bribery will convince him otherwise. It also, unfortunately, means often feeling judged – even when no one is judging – and feeling out of place in a group of parents because your child is obviously not like the others, and because you can’t SEE autism, no one knows why.
Autism is hard.
But autism is also pretty amazing.
For us, autism means having a just-turned-5 year old who delights in learning. He is still working on comprehension when it comes to stories, but he can read and understand a lot. He can sound out words, write them down, and follow written directions. He can add and subtract and is working on multiplication – and he gets SO happy and excited when we pull out the math flash cards. We need to find unique ways to teach, certainly, but he wants to learn and wants to please. He adores praise, hugs and high fives and cheering. While he has a large number of behaviors that are…less than wonderful…I don’t think most of them, maybe even any of them, are based on his wanting to disobey. I see a lot of his things are more about just wanting to play.
For us, autism means having a child who loves to laugh at jokes no one else understands. With Danny, I have learned to see the sheer delight in watching a bird fly, or a baby crawl, or snow melt flow down the street. He stops to splash in puddles with a huge smile, and his laughter is infectious as he sees bubbles floating through the air. Sometimes we don’t appreciate the jokes, like how he loves to shove Andrew around because Danny likes to play with us where we shove him and wrestle with him (so he does to Andrew what he likes us doing to him, thinking Andrew will enjoy it…), but when I remind myself to slow down, I have a lot of fun playing Danny’s games rather than just forcing him to do it the “normal” way. It may take us twice as long to walk from the front of the store to the back if we “stop” and “go” and “fast” and “slow” our way down the aisle, but Danny will smile and laugh and delight, and so will everyone who sees him.
For us, autism means being so amazed and proud and happy when our child speaks a sentence instead of just a few words strung together. It means finding joy and appreciation in things many parents take for granted. It means hugs where our son throws himself into our arms instead of wrapping his arms around us, kisses where he presents his forehead for us to kiss instead of laying his own lips on us. It means a twinkle of mischief in his eyes with a huge smile. It means seeing joy in your child, unfettered and pure – laughing and bouncing and clapping or flapping his hands as joy bubbles out of him over the smallest things.
That is my autism awareness.
So today, or any day, if you want to support Autism, certainly spread awareness online. But you can also support Autism Speaks or the US Autism and Asperger Assocation, or you can support your local special school district who work day in and day out to help our kids achieve their potential. If you know someone who has a child with autism, you can offer your support in the form of an understanding and accepting ear, or maybe take an hour of your time to watch their child while they relax, run errands in peace, etc. We are very lucky to have family and friends who “get it” and who love Danny for who he is – many families aren’t so lucky. You could share this post, or this article about the sides of autism people rarely talk about, or this video made by a girl with autism explaining autism, or the incredible story of Carly Fleischmann who has severe autism but learned, at 13, to talk and communicate and can explain what’s going on inside her head.
Blue lightbulbs and puzzle pictures on Facebook are wonderful and meaningful and show much appreciated love, but I want to take it up a notch.
(No, I have not abandoned the blog – however, I have a 1 year old who pitches a holy FIT if I spend more than 5 minutes on the computer…ever… I’ll get back into it eventually, I’m sure.)
Kindergarten is around the corner for Danny, amazing as that is to believe, and with that came the Mother Of All IEPs. 13 people crammed into a conference room to make it happen, requiring use of “wonky” chairs (their word!) relegated to the corner of the room…and for a second, as we piled in like clowns in a circus car, I wondered if we’d need to start stealing from other conference rooms.
We didn’t – just barely.
The meetings always begin with the catch all list of things Danny is good at and things he needs help with. The “help” list was ridiculously long, much of it focusing on a lack of strength and tone in his body still – affecting not only how he walks, but how he reaches, how he holds a pencil, how he carries heavy objects… When your trunk is weak, it’s amazing the things it impacts! He compensates fairly well, but it’s obvious in a number of “little” things, especially in a school environment. Of course, he also has the expected issues with speech, following directions, social interaction…all the same old same old there. What was new was the list of things he’s good at. Last year, it felt like it was “Danny has a great smile and a great laugh – and here’s the things he sucks at.”
This time, he had school district folks who don’t know him dropping their jaws.
“Danny can count, both verbally and in writing, to 130.” “Danny can spell a number of words.” “Danny is starting to do addition.”
There were a couple double takes, and an audible gasp as one point. I had to chuckle… That’s our son!
We spent longer than I would have liked going through each individual therapist and goal. I know it’s necessary, but it just seems to drag on, and after the first hour we slowly started to lose people to other commitments. Many of the goals didn’t change much, or at all, and the ones that did were just natural extensions of the ones he has. He’s made amazing progress…but isn’t quite attaining. And I’m fine with that!
The meat and potatoes I wanted to get to was Kindergarten. It’s all good to know what the individual therapists are focusing on, but where will he be? Well, let me tell you.
Danny’s IEP allows for 60 minutes of speech, 60 minutes of language, 60 minutes of OT, and 45 minutes of PT weekly, as well as 60 minutes of “hearing itinerant” (their hearing loss specialist) a month. Along with that, he will be in a small group setting similar to the program he’s in now, with adult help at all times. He’ll be with the mainstream Kindergarten kids for recess and lunch, and also for 30 minutes a day. Rather than specify when he’d join the regular class, they left it generic, so they can experiment and find what times of day he does best – circle and calendar, math, music, etc. He won’t be able to go to our home school, the same one Eric is in, because they don’t have a small group class set up that would be ideal for him; instead, we’ll find out later which school he’ll attend based on their juggling of kids leaving for middle school, kids coming in from preschool, etc. One of the schools with a small group like he would need is right down the street, though, so we’re hoping that’s where he gets placed.
All in all, there weren’t a lot of surprises, and there was a lot of good in the services being offered. We have to tackle, later, the issue of recess – the hearing itinerant said they do not just take off cochlear implants and let the kids go play, saying it’s a safety issue when they can’t hear. But I’m left to wonder…if he were a deaf kid without cochlear implants, would he not be allowed on the playground equipment? So there is that up in the air currently.
But first, there’s another 4 months of preschool, plus summer session, to get through. All this talk of Kindergarten has me thinking it’s a lot closer than it is!
Autism. I’ve studiously avoided the word for years; from about a year and a half to two years old, it’s been on my mind for Danny, but we never made it official. For a while, there was a bit of “maybe it’s just…” going on. Maybe it’s just his hearing loss. Maybe it’s just out parenting early in life because we never knew how well he heard or understood. Maybe it’s just something he’ll outgrow.
I think many parents think these things.
The fact is, it’s a reality for Danny and our family. We recently met with a neurologist who isn’t a big fan of the diagnosis, but he said that most professionals would agree that he’s got it. The fact I’d run into a while ago online, one the neurologist reiterated, is that autism rates are higher than average among CMV kids. At its core, it may not be the same autism as those kids born with it with no trauma or spurring factor, but the results are the same…or as “the same” as any two kids with autism are.
It’s so broad that it really doesn’t explain much.
A part of me wondered if I would react at all when a professional finally (sort of) agreed with our suspicion, confirmed it and made it real. I didn’t. It doesn’t change anything, except I no longer have to dance around it. No more “well, he has autistic tendencies” or “we think he may have autism,” he just has it. It’s no shock; in a way, I’ve known it for years.
I’m still not one of those autism moms that is lovey about it, or is super about awareness. Like CMV, like deafness, this is just another step. Maybe if I had one issue to champion, I’d be more prone to get behind some movement or another, but I have a lot of stuff going on with this kid! And I don’t embrace it; I don’t love being a mom to a kid with autism, I don’t feel blessed to have a special needs child. Frankly, it sucks, and four and a half years later, I still wish it hadn’t happened and that I could know the kid Danny would have been.
A part of me wonders if that doesn’t exist in most parents of kids with some issue or other… They just don’t want to admit it, because it doesn’t sound good to wish your kid was different from the way they are. I do, though. I wish his life was easier, that he could knock down the barriers that he lives with. I don’t feel sorry for him, or us, though. It sucks, but some things in life just do. Life is about making the best of the hand you’re dealt, and I tend to think we are doing that, and doing it well.
Like with CMV, we certainly could have this autism business worse. He’s not violent. He’s not 100% uncommunicative. He’s not extreme. And he is Danny, with all his humor and cheekiness and mischief.
The neurologist asked, as his parting question, how Danny is with hugs – because some kids with autism don’t or can’t give their parents that. In response, Danny stepped over and leaned into the doctor in his version of a hug.
Guess he answered that question for us.
And what a cool answer it was. That’s our Danny.
I got a call from Danny’s new teacher yesterday afternoon – nothing bad, just an opportunity to touch base since he had completed his first full week back to school. She is completely new to Danny; his old teacher from last year went to a different program, and he is now splitting his time between two rooms, one for the morning, one for lunch and the afternoon. There are a few familiar classroom aides working with him, but for the most part, he has a whole new team…well, other than his physical therapist, who does the whole program. (It’s a behavioral/autism program, so they have an individual speech therapist and occupational therapist for each room, but they only need one PT for the group.) He has been doing so well with the transition! There have been no tantrums or meltdowns, he goes right into the room, he is happy and chipper (well, most of the time – he still has his battles of wills with the teachers occasionally), and he is listening and warming up to the new people very nicely. I was a little nervous to see how he would do with so much change all at once, but it’s been almost a non-issue!
Anyway, we got to talking, and one of her first comments was a chuckling, “He’s all boy, isn’t he? Danny is one of the most energetic kids I’ve had in my classroom in a long time!”
He really is. He runs instead of walking, and he loves to wrestle, climb, and jump. It took her commenting on that, though, for me to remember that yes, he is all boy. Like many things, sometimes I get caught up in the “other” that is Danny that I forget, sometimes, that his behavior could be just totally typical. When Eric or Andrew, who has taken to diving off the couch (that is a whole other blog entry right there), act rough and tumble, I react by saying they’re all boy. When Danny does that stuff, I immediately start thinking about over-stimulation and sensory processing. If Eric is running all over, I roll my eyes about him having too much energy; if Danny is running all over, I say he’s stimmy.
When I catch myself, I hate how I automatically classify it like that. Granted, Danny does legitimately have some sensory needs – if he doesn’t get some rough play or other extra-strong sensory input, he does start to get a little wild, stim more (spinning in circles, rubbing his head against the floor), and at times he starts to act out in hopes of getting in trouble. But sometimes, he’s just…being a kid. Being a boy. I work so hard to see through the other stuff that shrouds him like a curtain and watch the little boy inside, but even as his mom, I struggle with it sometimes.
He loves cars and balls and animals. He loves to climb, wrestle, jump, and be a little dare-devil. He doesn’t like to sit still, he loves video games, and he is fascinated by leaves and sticks. Just like my other two, he is all boy, and that’s comes with needs that are special too – for a whole other reason.
July was a busy month for us, with Eric’s birthday, some ridiculous heat, and the majority of Danny’s summer school. At the end of it, however, we undertook our craziest part of this summer: potty training Danny.
Now, at nearly 4 and a half, it seems like he’s a bit old to be in pull-ups. That is true. I’ve had comments from people about the fact that he’s still in pull-ups. I’ve had people ask why he doesn’t potty. I’ve seen kids half his size and age going to the bathroom on their own. It’s been…a negative experience, to say the least. But, with his delays and issues, it just never presented itself.
Finally, I realized that – like many things – he is not going to “just get it.” That’s all the advice I kept getting: one day it will click. He’ll do it when he’s ready. Well, honestly, Danny may never have decided he was ready. I had to push him, so push I did.
First, I tried the old “take him to the potty every 10 minutes” routine. That was a horrible failure. He had no idea what was up, and by the end of 8-9 hours of taking him to the bathroom every 10-20 minutes, only to have him pee where he sat a minute later, I was ready to pull my hair out. The thing I realized from that was that he had no idea what the expectation was. The thing with a lot of kids with special needs is that some things just aren’t intuitive. Danny is not a social creature – he doesn’t care if we take him to the bathroom with us, he doesn’t care to watch us go, he doesn’t care if we offer rewards or punishments. He does his own thing. When I kept taking him to the bathroom, offering rewards and coaxing him to do like we do, he just…didn’t get it.
I saw someone posting on a forum about potty training their autistic 4.5 year old, so I reached out. I asked. What did you do? How did it work? Can you help me???
It turned out that she could. Bless her for reaching out to a complete stranger, she told me what she did. And we did it.
Rather than working it from the front end, taking Danny and expecting him to pee, we worked it from the back end. I waited for a week when Eric was in camp, and I stuck to Danny like glue. Whenever he started to pee, I picked him up and raced him to the bathroom. I sat him on the potty and announced cheerily, “Pee goes on the potty!” If he were to work on a bowel movement, I’d whisk him for that too.
One day. Two days. He would start to pee and run with me, peeing all the way, to the bathroom. It was exhausting. It was SO much work.
But it was working.
Three days. Four days. He would stop peeing, sometimes, to make his run to the bathroom. There was one day when he peed like 15 times in the morning alone. He’d start to pee, cut it off, run to the potty, and pee a little in the toilet. He’d repeat that 5 times in a cluster for the entire movement, like he was practicing how to stop and start.
Five days. Six days. I was ready to go bananas, but he was getting close. He would go into the bathroom and pee on the rug in front of the toilet, in his underwear – but the peeing was happening in the bathroom. He was right there, but I didn’t know how to bridge the gap. He didn’t want to stand on a stool, but he wanted to stand to pee. I tried teaching him to aim, and he just played with himself as he peed. Oh please, I thought, don’t give me another super-messy peeing boy.
Over a week in, and I was just…done. I couldn’t give up, because then we’d have to do it all over again, but I was so tired of being stuck in the house and stuck to his side – and now I had Eric to care for as well, since camp was over. But I was going to do it, darn it.
And it suddenly started to click. Pieces started to come together. He would hop on the potty, announce “no potty,” and get down, so I would sit in front of the closed door. Nope, I’d tell him. I know you have to go. I could tell his signals by now, playing with himself and refusing to stand still or sit in one place. It meant he had to go. So I took him and got him to go…and he started to.
We still aren’t fully there. It’s been a week and a half since we started, and I have to watch him. I have to pick up on his signals, but if I do, I can take him to the potty and he will go. If I don’t catch his signals, sometimes he races to the potty and pees on the rug, sometimes he just stands there and pees…but he’s learning. Today, he went to the bathroom a couple of times, and with me on his heels he just went. It will be a while yet I’m sure before he’s just doing it all independently, but it’s there. It’s coming. He hasn’t worn a pull-up during the day for a week and a half, and it’s so, so nice. (We still wear them at night; I could probably night train him if I just cut out liquids after 6, but he lives for his bedtime milk and it’s not worth the fight.)
It took a push. A huge one. But he is getting there.
Back in high school, I had an English teacher who once spoke about the dangers of equality. Dangers is perhaps too strong a word – but the point was that pure equality, much like pure socialism, is only wonderful in theory. In reality, if we treated everyone completely equal, it would ignore everyone’s individual abilities, preferences, and needs.
It struck me, then, and it strikes me even more now that I have a child with special needs.
A few blogs I’ve read demand their children with needs to treated “just like any other child.” Now, there is something to that – I never want people to treat Danny as less of a kid because of his stuff. But at the same time, we have had to change a lot of the things we do, places we go, and ways we do things for him. At first, that bothered me, until I remembered that statement about equality from so long ago.
See, as summer goes by, I try to make a fun experience for both my older kids. It works, but it is tempered, altered. Friends and playgroups talk about going to movies, having picnics, and spending all day at places like the zoo. These are all things Danny can do, sure, and if I were going for equality and treating him no different, we’d do them.
We would also pay a steep price for it. Going to the movies with Danny involves sitting way in the back, giving him an iPod when he loses interest in the show and the snacks, and probably chasing him down a few times as he tries to run up and down the stairs. There is no way he would ever sit still enough to have a picnic, and anything more than a couple hours at the zoo ends up in a battle because he loses his ability to follow, stay close, and listen – it just becomes too exciting, too stimulating. We tried a library program, and even though it was a “special needs” program for kids that have trouble sitting down, he was too active, too busy exploring the room and getting hands on with the book and librarian to fit in with the rest.
Now, I don’t say this as a negative. Once, I would be upset, be sad I couldn’t do all these fun “normal” things. But that’s just how Danny is, and I don’t need him to be like everyone else. We find other things. We take shorter trips places. We judge our timing and our destinations. We bring movies home and pop popcorn. We search out playgrounds with fences so we don’t need to worry about him running away. And yes, sometimes we just don’t go. Some may worry that it’s not fair to exclude him, but is equality worth it if all we do is battle and upset Danny (and ourselves) getting him to conform? I think not. Sometimes that means splitting up, one of us taking Eric to places Danny wouldn’t be interested in while the other stays home with the littles…but that’s ok.
Everyone accepts that every child needs to be parented differently…until they have special needs. Then, parenting to your kid’s needs is suddenly seen as unfair, as excluding them. We do our own thing, and yes, occasionally it chafes me to have to skip something or leave early for Danny – but it’s what he needs. And I will gladly embrace inequality at times if it means he is happy.