Bit by bit, we are learning how to communicate at a level that truly amazes me with Danny. As his reading grows, he is becoming empowered… He needs to work on writing still, but come on, he’s only 5… The stuff we are seeing now really makes me believe he will be fully communicative with an assisting device in time.
Until then, our house is becoming full of white boards, chalk boards, and scraps of paper.
Today, it was the bath. I put him in and he just wanted to stand and cry in the corner. “All done bath! I want all done bath!” Usually he’s fine with the bath these days, so it threw me off. I did a quick clean on him, he refused to help, and once he was out and dressed I asked him to come over to the board. I read the question and handed him the pen, and he answered.
Months ago, I would have been left in the dark. Now, he can tell me. I asked him if he could tell me what he was scared of, and he looked at me sadly. “No.” So I started asking questions, yes or no, and a few in I found it: “Was it scary because of the new shower in the bath?” “Yes!”
Change is scary, I know this – I had anticipated, for instance, him struggling when we got the new car – but I never even thought of something as small as a shower head. Not sure what I’m going to do other than power through and take it slow until he gets used to it.
Of course, that makes me feel all sorts of great about him going to a new school with a new schedule and new teachers in 3 weeks.
Any advice on how to get him ready?
It’s nearly 10, and suddenly a wail comes through over the baby monitor. I sigh and push myself to my feet, grumbling slightly; I’m so over the night waking, even though I know it’s most likely because of teeth right now. And, I suppose, it’s because Mommy was gone for 24 hours camping with Eric and he needs the reassurance that I’m still here.
Still, it’s tiring. He had been getting to a point where I could just be in the room and he would lay down and go to sleep – that’s gone now. I miss it. It felt like such a huge step in the right direction toward sleep.
I push open the door with all of the roiling in my head. When the crying instantly stops, it solidifies my resolve. I will not pick him up this time. I will stand strong! I will help him lay down on his own! Progress!
When I get to the side of his crib, I reach to him. I run my hand over his soft head, lay it on his cheek as I kiss his brow. The words are just forming on my lips to tell him to lay down and go to sleep when he lifts an arm. He gives me a half shrug, palm up, elbow bent – a mirror of how I hold my arms when I ask if he wants up.
In a tiny voice, he asks, “Up?”
How can I say no to that?
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.)
“I want McDonalds,” came Danny’s voice down the stairs.
“You can’t have McDonalds right now, Danny,” followed Eric’s voice softly. “It’s late. McDonalds is closed.”
It was over an hour past bed time, but still talking and laughter came from their room. When I put Andrew to bed and walked past their open door, Eric sat on his top bunk reaching down, and Danny stood below waving and giggling. I knew I should put an end to it and shoo them into bed…but it was hard to do.
See, when I found out I was having a second boy, I imagined late nights in bunk beds with two brothers talking, whispering jokes, teasing and laughing. Once Danny was born and we learned he was deaf, I thought I had to give that up. How could you sign while in separate bunks? We learned about cochlear implants and I worried a little – I mean, he’d sleep with them off – but maybe he’d keep them on long enough…
Then the “other” crept in, the missing social piece, the difficulty speaking, the global delays. With each little bit of the “other,” I saw those bunk bed conversations drift away.
By now, they were a distant memory, almost forgotten and well left behind…
…until I heard those voices drifting. So I let them go on a little longer than I should have, simply because it made me smile.
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!
Andrew is getting so big, so fast! At 10 months, he pretty much has perfected cruising. Every now and then we’ll catch him letting go of what he’s holding onto, briefly, but for the most part he has no interest in independent standing. When I try to play with him with it, he refuses to put his feet down and stand! I’m in no rush, though, so he can be a crawler all he wants. For all he is not walking, though, he is climbing – he will push things around so that he can climb onto them and, from there, further up. He’s managed to get onto his brothers’ desk in their room, onto the couch, onto the kitchen table… You name it. He has, at least, had the decency to master going down though, so he is no longer stranded or prone to falling all over the place; he very neatly turns around and goes feet first off everything.
With tooth #5 being cut this month, he took a bit of a…break from eating solids. He would still munch down purees, but until the end of the month, he wanted little to do with finger food. He’d eat a little, and expand his horizons some, but it was always in small quantities. Along with the food “regression” or sorts came a sleep regression, and hooooooly cow, the kid slept terribly! Waking 3-4 times a night has been the norm around here. He uses the awake time, it seems, to figure out babbling, because he’s been a pretty vocal kid with his /d/ and /b/ sound busting out again.
The most exciting part of 10 months, though, is the communication. Now, I’m not talking speech – there’s been no first word yet – but he’s getting the back and forth of communication down. We will blow raspberries at each other with great turn taking, and he’ll pause and wait for me to blow one (or his brothers, even Danny gets in on this action) before he goes on. Danny and I play an “ah-choo” game, and Andrew has picked up on it… If I sneeze (legitimately or not), often he will gives a squeal (very high pitched “ahhhhh!!”) and then blow a raspberry, which is how Danny play-sneezes a lot of the time. It kind of cracks me up, and I hope to catch it on video soon! He’s also been experimenting with signing “milk” when he nurses, and “all done” at times as well. He’s figuring out waving and will sometimes wave when someone waves to him…though more often than not, it’s after they disappear out of sight. He’s putting his arms up/out when he wants up, as well. Receptively, he’s understanding more and more, which is exciting and says to me that a word or two will probably be coming soon!
Andrew’s favorite games this month have been the drop game (yep, we’ve hit that stage) and crawling around the house making as big a mess as possible. He is starting to experiment with putting things back in though too, and will diligently empty and then refill stuff…at least part way, before getting distracted. You can just watch him and see him trying to figure out how things go together; I love watching the gears turn in his little head!
We are onward and upward to big things around here