Losing It

29 10 2008

This weekend, I was one shriek away from making a real scene. I took Neener and Roo to a birthday party. A costume birthday party, attended by a mini-throng of more than a dozen kids. Trying to keep an eye on my two kids in a stranger’s house and backyard is a little tricky. Trying to keep an eye on a sugared-up zebra charging through a mini-throng of Batmans and witches in a stranger’s house and backyard, with a cold-footed autistic bride in sensory overload curled up in your lap and begging to go home? More than a little tricky. Let’s just leave it at that.

But it was a birthday party, and the whole point of a birthday party is to have fun, so I was determined to keep a big stupid grin pinned to my face. And nothing says fun and big stupid grins like party games, right? Ohhhhh sooooo wrong. Stick the Wart on the Witch’s nose went over ok, except that Roo the bride almost went arse over tea kettle from the combination of being blindfolded, spun around, and instructed to do something. And Neener the zebra was a little perturbed that she didn’t win, but everyone moved on to the next game quickly, so, no big deal. Then came Pass the Pumpkin, in which an inflatable jack-o-lantern stood in for a hot potato, and a tape of scary Halloween sounds stood in for music. Imagine Roo’s pleasure, and by pleasure I mean grimace of terror, when the hostess went to the stereo, announced it was time to start the music, pressed a button, and out came a cacaphony of thumping, creaking, howls, screams and moans. Needless to say, Roo was not into playing Pass the Pumpkin. But I was surprised when she turned down my offer to take her out of the room ,and she happily opted to watch from the sidelines of my lap, with her hands clamped tightly over her ears. Everything was fine. Until Neener the zebra was left holding the pumpkin, about halfway through the game. When she realized that that meant she lost, well, she lost it. She started crying. Wailing. Bellowing and sobbing that she was a loser and that everyone would laugh and point at her. No one was laughing and pointing of course, but I was thinking mighty hard about just bailing on the whole birthday party thing right then and there. Through my gritted teeth, still locked in the big stupid grin, I warned Neener that if she didn’t stop crying about the fact that she lost right now, we were going home. No cake. No loot bags. No sticking around to see the birthday boy open the big wooden googly eyed Batman-styled letter C we made for him. Just dragged home by one pissed off and embarrassed mother. Then directly to her room. She did stop screaming. Tears and boogers kept streaming down her face, and her body was heaving with stifled sobs, but she did stop screaming.

The whole winning and losing thing is a tough pill for Neener to swallow. Any hint of competition immediately evokes anxiety in her, and she becomes very concerned with who will win and who will lose, regardless of the game. Sometimes there is no game. Sometimes she cries and says she lost if she’s the last one to finish her supper. Or Roo goes to the bathroom before she does. We try to explain that none of these things are competitions, but it doesn’t matter. When she is involved in an actual game, we try the whole “it’s not if you win or lose, it’s all about having fun” stuff, but she knows that that is bullshit.  She’s been in plenty of situations where the winner gets a prize and the loser get squat. And that sucks. Sometimes it does matter if you win or lose, especially when you are five and you really really really want a stupid prize. And for people to congratulate and cheer for you. How can we teach her that it’s nice to win, and it feels good to be the winner, but that losing is something you have to handle graciously and calmly. At least in front of others. Neener sees things in black and white. No shades of grey in her world. If winning is good, then losing is bad, plain and simple. And I have no idea how to change this.

And as much as it is in my dragon-mother nature to breathe fire and toast my kid for acting like a spoiled brat, I’m hesitant to come down on her too hard for being a bad loser because I’ve seen first hand what that does. Neener hates to be scolded. Hates getting in trouble, and will do anything in her power to avoid it. And she knows that right now, she can’t stop herself from getting upset over losing. So instead, she will just refuse to play. That keeps her from losing. Keeps her from getting upset. Keeps her out of trouble. But it also keeps her from getting the practice she needs to become a good sport. Keeps her from experiencing the fun of playing. Keeps her from interactions with her peers, which she desperately needs. Which is what happened at the party. When round two of Pass the Pumpkin began, Neener did not want to play. But much to my surprise, Roo did. So, Neener curled up on my lap and clapped her hands over her still-teary eyes, while Roo joined the other kids on the floor. I watched with bated breath as she both took and passed the inflatable jack-o-lantern. Even while the scary sounds howled in the background, and the kid beside her had long curly hair and jewels glued to her face, Roo stayed focused on the game. No hands over her ears. No hands on the kid sitting beside her. Just playing the game. And playing. And playing. Until she was the last kid sitting. You couldn’t have pried the big stupid grin off my face. Or Neener’s face, for that matter. Roo had won her first ever birthday party game, and the three of us were visibly proud. Roo got to go into the treasure chest and pick her own prize. She emerged with a make-and-paint-your-own-sea-creature kit, complete with paint, brush, mold and enough plaster of paris to make two things. Mind you, the prize later plunged us into much chaos when Roo ate a big handful of the plaster of paris, but in that moment, it was fantastic.

So the lesson here is clearly that winning is awesome, and losing sucks. And it’s better to not play the game and hope the winner will share her prize with you than it is to play, lose, cry, and get dragged home by your fire-breathing dragon mother. But I can not tell Neener that. I have to pin a stupid grin on my face and encourage her to play. Then, help her pick up the pieces of her shattered existence when some other kid manages to throw an inflatable pumpkin at her just as the scary Halloween non-music stops. And all of this must be done without losing it myself. Tricky. Let’s just leave it at that.


May the Fork Be With You

9 10 2008

When Roo was a baby, her occupational therapist gave us some good advice: let her play with her food. Let her finger paint with pudding. Let her feed herself with her hands. Let her touch and squish and poke and prod and practice getting food in her mouth with her own two hands.  So we did just that, with her and Neener too. And it worked beautifully. It helped them develop better fine and gross motor control, encouraged a sense of independence, and may have spurred their creativity. By the age of two, these kids could turn a pile of mashed potatoes, green beans and tomatoes into a three dimensional crab scuttling through sandy sea grass. I kid you not. And while it was great for all these important skills, our little Fun With Food therapeutic approach to mealtimes did diddly squat for their table etiquette. I’ll never forget the look on my poor mother-in-law’s face the first time she saw them dig into a meal with their fat little, tremendously dexterous toddler fingers. She was appalled. I could tell she was appalled by her gigantic ear to ear grin. And by the way she asked in a high-pitched, sing songy, sugar-laden voice, ” So…when will they start using utensils?” The answer, three years later, is “Soon. I hope.”

Yes, my five and a half year olds can write and illustrate their own comics, but they still struggle with using utensils. For Neener, it’s a matter of reminding her to do it. And now that we’ve shown her how to hold and handle a fork or spoon so that food actually gets into her mouth, she’s really getting the hang on it. But for Roo, it’s tougher. While her fine motor control is great with a marker or pencil, she still struggles with one-handed manipulation of objects. Especially long, thin utensil shaped objects. Especially long, thin utensil shaped objects that must be held a certain way, and maneuvered a certain way, and kept steady enough to pick up other uncooperative objects of various sizes and consistencies. Especially when all she wants to do is fling that long, thin utensil shaped object across the room, so she can pick up those uncooperative but delicious looking other objects of various sizes and consistencies with her hands, and shove them in her mouth because she’s starving, dammit! And did I mention that Roo is not the most patient child in the world? And that sometimes you have to ask and remind her several dozen times to get her to do something? And that she really hates to be nagged? And that she loves to use her hands to get things – delicious or not -into her mouth? Clearly, this is going to require some strategic parenting, lest someone ends up with a long, thin utensil shaped object in their eye. And by someone, I mean me.

So, I’m thinking I’ll start simple, by introducing something called “Fancy Manners.” “Fancy Manners” consists, for the time being, of not touching your food with your hands. When I see an opportunity, we will practice “Fancy Manners” at home, which may or may not entail wearing fancy hats and speaking with fancy British accents. “Fancy Manners” will be in effect when we go out to a restaurant, or when we have company over for dinner. The rest of the time, we’ll encourage utensil use for Neener and Roo, but we won’t harp on it. We’ll harp on before-and-after-eating hand washing instead. Chances are, by the time they are adults, their “Fancy Manners” will be well honed enough to save them from any public embarrassment. I’m a firm believer that the ambiance of family meals affects how you eat, and how you relate to your family. If a child’s meal times are full of constant corrections and directions on how to consume their food, you can bet that the kid will eat as fast as possible to escape the stress and unpleasantness of having a parent nag the shit out of them about table manners. Meals are a time to enjoy food, and enjoy each others company. It’s great if they can work on their manners at the family table, and I’ll make sure they understand the importance of using those manners in the company of others, but I’m not going to get all Darth Vader-ish about it. No menacing threats or demands or heavy breathing. In fact, I’m going to take the opposite approach. The Obi-Wan Kenobi approach. The gentle Jedi coaching. The loving guidance of a whispered reminder when it really counts.“Use the fork, Roo. Use the fork.”

Out of the frying pan and into…the research study

16 09 2008

In another life, I think I might have been a doctor. Possibly of the witch variety. I might have even been a doctor in this life, had it not been for my profound love of parties and boys, and if such a career path had not held the pre-requisite of grade 12 honors math. Lucky for me, my mind, my line of work, and my family are such that I’ve been able to get my medical nerd fix without taking calculus.

So, when the opportunity arose to take part in a nation-wide research study on infant siblings of children with Autism, you better believe I jumped at the chance.

Here’s what I figured would happen: I’d get an inside look at the research process, and be able to offer up some interesting observations about Roo that might help doctors better recognize Autism in young girls. We’d make an interesting bit of research, and the research would make an interesting bit of fodder for my writing. The doctors, like so many doctors before them, would be impressed by my knowledge and my insights and my enthusiasm for the latest research abstract in the Journal of Pediatrics and Child Health. They’d marvel at our amazingly complex children, and at our amazingly simple approach to enjoying our life even though it’s fraught with the complexities of multiple weirdnesses.

And indeed, all those things did happen.

But here’s what I didn’t figure: I didn’t figure that in the days leading up to our first meeting with the doctors and researchers that I’d start paying closer attention to some of Baby Squiggle’s subtle behaviours. I didn’t figure I’d be struck by how similar some of those subtle little behaviours were to the very same subtle little behaviours we noticed in Roo at the same age. I didn’t figure I’d see the researcher scribbling down notes about inconsistent eye contact and lack of interest in interactive play and minimal response to facial expressions. I didn’t figure I’d have to admit that even though two months ago, Squiggles could happily shout the word CAT as clear as a bell, she has not done it since. And that she seems to have lost the ability to roll over. These are the red flags we saw in Roo. The difference is, we didn’t know they were red flags then. But now we do. I didn’t figure I’d be sitting here figuring that in all probability, in this research study of infant siblings of children with autism, Squiggles will belong to the group of babies later diagnosed with autism themselves.

But here I am, doing just that.

It’s a strange place to be. The doctor inside of me is interested in what this all means clinically, neurologically, genetically. What kind of impact will this have on the research findings and the subsequent diagnostic tools used to screen other infants? But the mother inside of me is afraid of what all this means socially, emotionally and personally. What kind of impact will this have on our family, and on my baby? The mother inside of me is worried and a little stressed by all the unanswered questions, and all the unknowns. But the doctor inside of me is confident that our family has the skills and the tools we need to deal with what ever comes our way. No calculus required.

Only A Little Bit Beautiful

13 09 2008

Everyday when Roo comes home from school, I ask her how her day was. And every day she gives me the same reply: a cheerful and enthusiastic “Great!” But it’s always followed by the much softer, almost trailing off addition of “And a little bit beautiful.” She says this about every single day, regardless of what went down. Even the day she had a bit of a meltdown, crumpled up her worksheets, and threatened to “Litter all over the whole school” was still “Great…and a little bit beautiful.”

I’m sure that part of what makes each of Roo’s days a little bit beautiful is the presence of Rachel. Rachel is an awkward little violet of a girl with long legs and pale blond hair. The most distinct feature of her face is the ever-present thumb firmly planted in her mouth, complete with pointer finger hooked around her nearly invisable nose. Rachel is Roo’s seatmate, and possibly playmate. Who knows, for sure. Roo says that she plays with Rachel at recess, but we all know that Roo’s definition of ‘playing with’ someone, and her definition of a friend is a little different, in that sometimes the other child has no idea that they’ve been befriended, and no idea that they play a role in Roo’s elaborately constructed hypothetical play scenarios. And asking Roo what Rachel is like yields no real information either. The answer is always the same. “She’s a little bit beautiful.” What I do know is this: everyday, Roo rushes to Rachel’s side in the classroom entry line up. Roo plays with the many zipper fobs hanging from Rachel’s backpack. She reads outloud whatever’s written on Rachel’s T-shirt, and there is almost always something written on Rachel’s T-shirts. Sometimes, Roo reaches up and gives Rachel’s fine, stick-straight plaitnum hair a twirl, commenting that Rachel’s hair is “beautiful.” Remarkably, Rachel does not back away. She does not recoil from Roo’s invasion of her personal space. She does not reject this odd little girl who doesn’t quite know how to play or converse with other kids, and who could errupt into paper crumpling litterbugdom at any moment. Rachel just stands there, patiently and securely. Still sucking her thumb. And sometimes while Roo is fiddling with Rachel’s backpack fobs, reading her T-shirt and twirling her hair, from behind the face-obscuring hand hovering in front of Rachel’s mouth, I think I see a little smile. A smile directed at Roo. And it is more than a little bit beautiful.

Autism Land’s Next Top Model

19 08 2008

Sometimes, when I go to look at myself in the mirror, all I can see is Roo. Literally. More often than not I have to push her out of the way just so I can see how obvious the spit-up stains on my shirt are, and to be sure that no-one drew a Fu Manchu on me as I slept. That child is always standing, or more accurately, strutting in front of the mirror. Or the finger-and-face print covered glass of the patio door. Or our giant television, which she will intentionally turn off so she can gaze at her little ol’ self in the shiny blackness of the screen. And I’m pretty sure her reluctance to use cutlery is rooted in the desire to stare at her reflection in the idle concave of her spoon so she can see what she looks like eating upside down. Vanity, or insanity? I’m not sure. But I do know that it’s all my fault.

From the time Neener and Roo were about a year old, they’ve been surrounded by mirrors. Our home was full of them for very good reasons. Because of some early signs of potential oral motor problems, I figured Roo was going to need some speech therapy. So I took it upon myself to get a jump on it, to ease my fears that we’d be left languishing on a waiting list. The suggestion I got from our Occupational Therapist was mirrors. Sit with her in front of a mirror and make faces. So we did. We secured mirrors to the walls, right at little person’s eye level, so Roo could sit and stare at her own face. Then later, so she could watch herself move, to improve her sense of where her body was in space and help her gross motor development and co-ordination. Another reason for the mirrors was the fact that their strategic placement allowed me to spy on my kids. It was the next best thing to having extra eyes surgically implanted in the back and sides of my head. The big horizontal mirror affixed two feet off the floor on the living room wall let me see into every corner of the room from my supper-making vantage point at the kitchen counter. And the one on the playroom wall gave me a great view of any doings as they transpired, from the comfort of my computer desk. So, mirrors were a big part of our surroundings, and looking in them was a big part of our life.

And then there’s me. I’m guilty of being a bit of a mirror hound myself. When I go window shopping, I never actually see what’s in the store windows because I’m too busy looking at my own reflection. And when I was a kid, I spent extended periods of time, lost in the bathroom mirror, looking at myself. And talking to myself. Conducting interviews with myself, actually. About my thoughts on anything and everything, including, but not limited to how I got famous enough to warrant so many hours of interviews. I was preparing for my future career as a celebrity, ok. And when a delightfully sycophantic interviewer with TV crew in tow comes knocking on my door, wanting to know my top 10 favourite song lyrics of all time and why, I’ll be ready. More than ready. And I’ll know exactly what I look like when I’m giving those answers.

Like I said, it’s all my fault. I gave Roo abundant access to the reflective surfaces, and now she’s following in my self-obsessed footsteps. And she’s not just looking at herself. She’s posing. Flipping her hair and grinning. Winking as she strikes a sassy hands-on-hips stance. Sucking in her cheeks and batting her eyelashes. Checking herself out on any surface that will bounce her beauty back to her. And Roo is beautiful. Unlike me, she is very photogenic. Actually, everyone else in our family is photographically challenged. I can magically make three extra chins appear in the blink of a lens. Mr. is the king of big fake crazy hyena smiles. And Neener, despite being Roo’s identical twin, has a knack for looking a little drunk, with one eye half open in almost every picture. Even Squiggles is prone to Franken-baby shots. Now, that’s not to say we don’t have our moments. Every once in a while we all manage to pull off a nice picture. But for Roo, it’s not the exception, it’s the rule. And I think she knows it. Unlike me, I don’t think she’s obsessing, looking for reassurance, trying to allay her insecurities. I think she’s genuinely admiring herself. Adoring herself. And though I hope she eventually graduates to interviewing herself in preparation for sharing her beautiful brains with the world, instead of just staring at herself being cute, I can totally see her being plenty content sticking to the hair-flipping, cheek-sucking, sassy hands-on-hips posing. So, I might be raising a Next Top Model contestant here. Not my first choice, but since when do my kids follow any sort of plan I’ve concocted? I suppose there are far worse things for a girl – any girl, let alone a girl on the Autism Spectrum – to aspire to be.  Remember Heather from ANTM? Yeah, I’d be ok if my kid turned out like her.

From the time Roo was a baby, people always commented on her eyes. How her eyes seemed to be looking into your soul, or looking right through you. But now, I think I understand that. It’s not that she’s looking through you. She’s looking past you. Scanning over your shoulder for a chance to see her reflection in a car window, an oven door, or the little metal bit on a light fixture. Or, if she’s doing the soul searching eye-contact thing, maybe it’s because you’re wearing glasses. Or, she’s looking deep into your bright, shiny, glassy eyes to catch a glimpse of the thing that means the most to her: her self. And really, she has every reason in the world to love what she sees.

Now if only she’d get the hell out of my way so I can get in front of that mirror and finish my interview about how I got all these spit-up stains on my shirt.

Postcard from Autism Land #3

14 07 2008

The other day, Mr. and I came across some video clips of Neener and Roo when they were seven months old. The same age as Squiggles now. Seeing those videos affected me very deeply, and in ways I had not anticipated. Of course there was the warm fuzzy nostalgia of seeing my firstborns back when they were relatively new, giggling and wiggling around. And naturally, it got me thinking about those early days. About how there were two babies in my inexperienced 26 year old hands. About how there were twice the diapers, twice the feedings, and half the sleep that we are now experiencing with Squiggles. It dawned on me that having twin babies must have been really hard, which is something I rarely stop to acknowledge. If I’d thought about how tough it was at the time, I could have quickly become overwhelmed and depressed. Lucky for me, I did not have the luxury of time to feel sorry for myself. I had two giggling, wiggling babies who needed me to put my hair up in a ponytail on top of my head and scurry around on my hands and knees, barking and sniffing, in a game we called Fluppy Dog. I had forgotten all about Fluppy Dog until I saw those videos.

The unexpected thing that dawned on me was that those videos were from the ‘Before Time.’ They were made about two months before we knew we were looking at a diagnosis of Cerebral Palsy for Roo, and long before we knew anything about Autism. Like most people, Autism was just an abstract concept to us. It was this thief-in-the-night type thing that went around snatching little boys, turning them into all-rock, no-talk hollow shells of children with crucial pieces missing from their puzzling lives, while their devastated parents could only hunt for a cause and a cure for this ‘disease.’ We were essentially ignorant of all things Autistic, save for the few half-truths and misguided metaphors we’d picked up from the odd bits of media coverage. Autism was not something we had to think or worry about back then. Which is probably a good thing since we already had our hands and minds full. But almost immediately, I felt a pang of envy watching that younger, more naive me playing and singing with my babies. I was gloriously unaware that raising those babies would be complicated by the many bumps and detours in Autism Land. Carefree compared to the me of today. Seeing the bliss in my own past ignorance made tears well up in my eyes.

Then, as I watched these little vignettes of Neener and Roo at seven months old, I couldn’t help but look for signs that might have hinted at the road ahead. Especially since doctors and researchers now think they can spot early indicators of autism by six months of age. Of course, there were many things that we, and the many doctors we dealt with, missed along the way. But they only seem obvious in retrospect. Roo lagged a bit in her gross and fine motor skills. And she had some quirks: A serious aversion to certain sounds, and any kind of talking toys; spells of staring off into space; selective hearing and odd eye contact; no fear of unfamiliar faces or places. And even as a baby, there was always something different about her vocalizations, her cooing, and her speech development, compared to Neener’s. Something I could never quite put my finger on, and ultimately didn’t worry about because all the professionals I spoke to and the books I consulted told me not to. From the time she was two months old, Roo was on medication for grand-mal seizures, so much of her odd behaviour was chalked up to her daily dose of phenobarbital. And she never exhibited any of those big red flags that the handy little autism awareness checklists and pamphlets in the paediatrician’s office tell you to look for. Those same handy checklists and pamphlets also happened to lead my cousin to spend a few thousand dollars in speech therapy, and many nights in worried tears over the development of her very un-autistic son. Meanwhile, my actually-autistic daughter slipped beneath the radar for years because no one knew or thought to look beyond the narrow parameters of a checklist, and the even narrower assumptions of how an autistic child looks and acts.

I also wondered if we would have done anything differently if we’d known about Roo’s autism when she was a baby. Probably. Would it have been better for her and for us? Maybe not. As much as I understand the benefit and logic of early intervention, I think for us, there could have been such a thing as too-early intervention. Knowing too much too soon could have quickly and permanently tipped my careful balance between stress and bliss too far in the wrong direction. Granted, I do wish we’d realized it was autism we were dealing with – and not just a defiant, disobedient child – a little earlier than we did. I might have been more patient and more understanding with Roo in those million little moments when it just seemed like she was being a spoiled brat, and trying to push my buttons. But then again, if we’d known any sooner, it might have influenced our decision to have another baby. I was almost two months pregnant with Squiggles when we got the first official inkling that Roo was autistic, and the actual diagnosis came a week before Squiggles was born. I can’t say for sure that we’d have done things very differently, but I tend to believe that the Universe unfolds as it does, when it does, for a reason. At least, my Universe does.

Even though it’s been a while since I’ve written a postcard from Autism Land, my regular posts – not to mention the day-to-day life of the Blister family – always have the threads of life on the autism spectrum woven throughout. Sometimes it’s stuff we can laugh at. Like the immense and loudly expressed joy Mr. and I felt when Roo was able to restrain herself from eating old stepped-on french fries from the floor of MacDonalds after only three verbal warnings. God, that was a great day! And other times, it’s anything but funny. The busyness of the last few weeks, and the sheer effort Roo makes just to hold herself together in so many contexts, has been catching up with us lately. We’ve had to extinguish multiple meltdowns, try to decipher many bouts of frustrated echolalia, and be vigilant in looking out for her safety when she has trouble doing it for herself. It is clear that even though we’ve moved half way across the country, we are still passport carrying citizens of Autism Land, just as we were back when those videos were made. Even though we didn’t know it then.

I still don’t have the luxury of time to dwell on the difficulties of our circumstances, or to sit around feeling sorry for myself or for Roo. She’s the same smiling, laughing, loving child she was in those videos, just older and a little more complicated. I’m older and perhaps more complicated too. But I’m also wiser. Wise enough to be glad that I didn’t know then what I know now. Wise enough to trust that my Universe has unfolded as it should. And wise enough to know when it’s time to stop analyzing old home movies, put Autism Land to the back of my mind, and go play a little game called Fluppy Dog with my three beautiful giggling, wiggling little girls.

Postcard from Autism Land # 2

15 04 2008

Today was a beautiful day in Autism Land. It was all sunshine and lollipops. Literally. Neener and Roo are two for two on good days at school and at home this week, so they certainly deserved the lollies we treated them to on the way home from school. Roo unbuttoned a button for the very first time. Neener helped Roo pour a glass of milk. Roo said “Thank you.” Neener said “You’re welcome.” There was no frustrated echolalia yelling, no “incidents” noted at school, and no meltdowns. There was no trace of the white knuckle days we experienced last week. Today was a new day. A beautiful day.

Part of the reason today was so great in Autism Land was that I had a meeting with our social worker. I spent a big chunk of this sunny afternoon talking with her about Roo’s challenges and how we deal with them, and I learned something very exciting: We are not fucking up! We’re actually doing really well when it comes to managing Roo’s behaviour and helping her develop the skills she needs. Now, folks who know us may say “Well duh! You guys are doing a great job. Roo is a great kid, and you put so much into helping her.” But they are our family and friends. They have to say that. Besides, it is much easier to see that when you view Autism Land from a distance, and can see the whole landscape. We live smack dab in the middle of it, which makes it very hard to see the progress made over time, and even harder to feel confident in our day-to-day and moment-to-moment actions and reactions. All parents second guess themselves. Many parents of children with special needs second, third and fourth guess themselves, especially on the days when it feels like your entire world is being drop kicked into hell in a handbasket.

It helped to have an objective third party hear our concerns, hear the solutions we’ve cobbled together, and then tell us that we are actually doing things right. Things like ‘the hold’ that I get Roo in when her meltdowns spiral into hurting herself or others. I felt like shit for using that to calm her down and keep everyone safe, thinking I should not have to physically restrain my child that way. Like if I was just better at handling her, it would never have to happen. Turns out that those types of meltdowns are not unusual, and  ‘the hold’ is a good technique for our situation. And the deep pressure of the bear hug coupled with my slow, soothing voice in her ear talking her through the steps to calming down is teaching her tricks that she will eventually be able to use by herself. Ignoring the spitting and the stomping? I worried that doing that was on par with letting her get away with it. But nope, it’s actually a good strategy for making it stop. Talking to her, and to Neener about Autism? God, am I fucking them up with labels, and making Roo think there is something wrong with her by telling her that her brain is different?  No, apparently not. Kids really do deal much better when they have some information to go on, and we are respecting their intelligence and their need for an explanation by being open and honest with them. So, even though I might feel like a heel sometimes, I’m not! At least, not when it comes to doing the whole Mother of a Child With Autism thing. Our social worker will back me up on that. I might get her to put it in writing.

I still worry about what Neener and Roo know and think about our life in Autism Land. I probably always will. I hope we can keep accepting Roo’s Autism as a part of our lives without making it the focus. And on the good days, we can actually even laugh about it. Today was indeed a good day.

As we walked down the busy street to get that after school candy, Roo began chanting at the top of her lungs, ” I am autistic! I am autistic!”

“What?” I asked, to clarify what I’d heard.

 “Autistic.” she repeated. “I’m very good at aaht.” 

“Me too.” chimed Neener.

Ah yes, the newly adopted English accents courtesy of Mary Poppins.

” Right. Well, our whole family is aahtistic.”  I grinned.

It was a beautiful day in Autism Land.