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NueroTribes

NueroTribes

It’s Autism awareness month and yesterday was world Autism awareness day. Usually I’d be lighting it up blue and doing my annual post on how the past year has gone raising a kid on the spectrum (See my posts from 201420152016), but lately I just haven’t been feeling super passionate about much of anything.  Still, autism is near and dear to my heart.

I just started reading the book NueroTribes: The Legacy of Autism and the Future of Nuerodiversity. Noel discovered it from The Art of Manliness podcast and I highly recommend giving this particular episode a listen. It’s an interview with the author that is both fascinating and enlightening. Give it a listen.

And in case you wanted an update on Cooper, he’s doing awesome. We’ve phased out his private therapies and are seeing how he does with just the therapy he gets at school. Academically he’s mostly at grade level and even above in math. He’s universally adored by everyone that teaches or works with him. There are of course still things that are challenging (riding a bike, attending assemblies, catching sarcasm, etc), but his future is bright.

Commencement

Commencement

Nothing could make a parent more proud than to see their child work hard and finally graduate . . . from kindergarten. I personally think kindergarten graduation is a little silly, but as a parent, I have to admit it was both adorable and hilarious to see the kids in their cardboard graduation “caps” and see the slideshow of what they want to be when they grow up. (Cooper is going to be a firefighter.) Cooper really has worked hard this last year. He’s made huge progress socially and is doing well academically. He had an awesome team that really looked out for him and helped him shine. Thanks kindergarten for being awesome!

 

Light it Up Blue 3.0

Light it Up Blue 3.0

This is my third Light it Up Blue post (1.o and 2.0) and definitely the one I’ve worried over the least. This is the first year that I don’t choke up every time I talk about Autism, and the first year that it has felt truly “normal.” Yes, there’s been a few bumps in the road with Cooper now and again, but we’ve grown comfortable with ASD being a part of our lives – it’s our normal. I admit, I sometimes do get a twinge of sadness when I take him to the grocery store and he acts like a possessed beat boxer or when I realize other kids Cooper’s age are zooming around on bikes sans training wheels while he laboriously pedals at a snail’s pace even with the training wheel safety net, but I know he’ll get there, just in his own time and in his own way.

Cooper has grown so much. Remember last year how I was so depressed by Cooper’s performance in the Primary program? Well, this year he said audible words into the microphone and I cried for a completely different reason. He’s also blossoming at school. Just in the last month he’s started playing tag with the other kids when school is over – something he’d never wanted to do despite my encouragement. One afternoon he came up to me and asked me to tie his shoe and one of his classmates said, “Cooper can talk!?!” I said, “Of course he can talk” and then Cooper piped in, “I sure can!” which made me want to give him a million high fives. He’s growing and learning, and honestly, so are we. I’ve become less guarded about his Autism and at appropriate moments have told many people about it this last year. It has been unbelievably freeing. I don’t know if it’s my attitude about it or that we rub shoulders with a lot of great people, but 98% of the time people have been genuinely accepting and eager to learn more.

In some ways, our journey with Autism has been easy. We have awesome insurance, an outstanding support network, a cooperative therapy team, and a kid with a lovable temperament, but that isn’t everyone’s journey. One of the things that I found most surprising about the ASD world when I first wandered into it, was how divisive it can be, but I suppose that shouldn’t be too much of a surprise considering the amount of ground the spectrum covers. The diagnosis ranges from families that would do anything for a “cure” from the debilitation it brings to their children to individuals that shun “treatment” and call for universal acceptance of their quirky perspectives. I obviously fall somewhere in between. I want Cooper to succeed in the world, and I think that will only happen with both acceptance and treatment. I truly hope that balance can become the norm for the whole range of the spectrum.

World Blue

The Ebb and Flow

The Ebb and Flow

“Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” – Elizabeth Stone

One of my favorite things about Cooper has always been his cheerful disposition, so when he started having crying outbursts at school and fake coughing in the mornings in hopes that I’d keep him home my heart hurt. We have a great team that is working hard with us to help him feel less anxious, but it doesn’t make my heart ache any less on the days his eyes well up at school drop-off. I hug him and over-enthusiastically tell him to “have a great day!” even though I feel like I’ve been emotionally sucker punched. Then I wave feverishly and smile bravely until he disappears into his classroom and pray I can avoid my own crying outburst in front of the other moms.

Then yesterday, when he stood up in front of our entire church congregation and said audible words into the microphone during our annual Primary program I thought my heart might burst with pride. Just one year ago this same program made my heart hurt as the difference between him and the other kids seemed so painfully obvious. This year there was still a difference, but he’s gotten bolder and that made my heart soar.

I didn’t give it much thought before becoming a parent myself (sorry, mom and dad), but being a parent of any child (because they all have their struggles) is brave work. I often find the emotional rollercoaster ride of parenting to be disorienting and some days I think the highs and the lows just might do me in – and we haven’t even had to deal with anything heart wrenchingly difficult. It can be uncomfortable to feel so intensely. Every time I think my heart has been stretched to the breaking point we have a small triumph or a nudge from above that reminds me we’re being watched over.

Last week I dropped Cooper off at school on a day that it was pouring rain. The kids got to go in the front door instead of lining up on the basketball court outside. Cooper was thrown off by the change and I left him in the classroom looking a bit bewildered. As I was leaving the building I found myself walking next to one of the other moms in the class and we started talking. After exchanging pleasantries, she asked how Cooper was adjusting to school. Even though I’m pretty open about Cooper’s ASD diagnosis I rarely spring it on people when I first meet them, but today I did. “He has Autism Spectrum Disorder, pretty high-functioning, but it makes being in a class with that many kids kind of rough sometimes.” The words were out of my mouth before I even thought about the possible repercussions. As it turns out she’s an occupational therapist who works with kids like Cooper all the time. We had one of the most comfortable conversations I’ve ever had with another mom about Cooper’s challenges and even though it didn’t change our struggles, I felt like one more person understood us and somehow that made my heart feel a little bit stronger.

First Week of School

First Week of School

Whenever the word “kindergarten” was mentioned over the summer, Cooper would light up and I would try not to hyperventilate. Back in the spring, we met with the special ed team from the preschool and the elementary school to talk about his transition. After the meeting, the two teams collaborated to make him a book that would hopefully help him adjust easier to his new school. I also took Cooper on a tour of the school and then during the summer we read the book and talked often, through nervous smiles, about his new school. I know kindergarten is a hard transition for most parents, but I was especially nervous.

When Cooper was first diagnosed with ASD, I read a lot about how early intervention is so important – that the earlier you start therapy, the better it works. I felt like we were doing just that and for some inexplicable reason I told myself that by the time he reached kindergarten no one would even know the difference between him and the next kid. I don’t know why I choose kindergarten as my “deadline.” I never read anything that indicated this and no therapist ever even close to insinuated it, but for some reason it helped me sleep better at night to tell myself that everything would be “fine” by the time elementary school rolled around. When preschool ended and Cooper was still using a communication book (his teacher would jot notes of what they did that day) to tell me what happened at school and we were adding on more therapies, my heart sunk. It was clear, even to me, that my arbitrary deadline was a farce. Over the summer, we kept up our therapies, played hard, and for the most part I didn’t think about kindergarten (denial), but every now and again it would come up and I’d feel the panic start to rise.

At the school open house, we met Cooper’s teacher for the first time. While we were talking to her, the principal started to talk over the PA system and Cooper began to look around confused and agitated, twisting his ears with his fingers. The teacher got down on one knee and calmly tried to show him where the speaker was in the classroom and explain that it was the voice of the principal. As I watched the two of them, I started to relax a tiny bit. The first day of school the elementary school does a unique thing called “Getting to Know You” where the kinders get to bring their parents to school, the idea being that it eases the transition for everyone. In our case, it really did ease the transition, probably mostly for me. On the first “real” day of school I dropped Cooper off and then nervously waited for the next three hours to pass. When I picked him up he bounded out the door beaming. Then he told me that he went down the slide and across the blue bridge and that they went to the library, but didn’t get any books. He also showed me a picture he drew of the public library. I was speechless. If I added up all the things he voluntarily told me during his two years at preschool it wouldn’t be that much. Later, he also added that his favorite part of kindergarten was the playground, lunch (snack time), and drawing. Also, he felt it was important to tell me that his teacher has two garbage cans. He hasn’t been that talkative every day, and I’m not counting on this year being a cake walk, but he’s progressing and that makes my momma heart over the moon.

First Fireworks Show

First Fireworks Show

Cooper excitedly waiting for the fireworks.
Cooper excitedly waiting for the fireworks.

There has been a dearth of fireworks in our lives since having kids. Something has always prevented us from venturing out with our kids to one of the big shows on the 4th of July (rain, fire bans, a deep love for bedtime, etc). We decided this year was the year we finally introduced our children to the great American tradition of pyrotechnics. (Technically, we did take Cooper to see an impressive Cherry Blossom festival fireworks show on the Mall during our month in Washington DC, but he doesn’t remember that and we were also somewhat far away.) Every year the fancy golf course excuse me, country club in the neighborhood has a fireworks display for their members. The great thing about fireworks though, is it’s hard to keep them private. Our church building happens to be right across the street from the course which made for a perfect viewing area.

Ellen running SO fast.
Ellen running SO fast.

The kids were so excited, talking non-stop about the fireworks as we set up our chairs. Ellen carried on long conversations with perfect strangers and Cooper snarfed all of his friend’s popcorn. It was a fairly windy night so they kept sending up test fireworks with 10-15 minute waits in between. We were starting to wonder if they were going to just cancel the entire show when they lit up a ton of fireworks. (I think they accelerated the show to try and get as much lit as they could during a calm stretch.) We’d tried to prep the kids for what the fireworks would be like (telling them they’d be loud, showing them youtube videos of fireworks), but when the real thing happened they were terrified. Ellen buried her head into Noel’s shoulder and I literally thought Cooper might break me in half with how tight his thighs were squeezing me. We tried to calm them down, but Cooper was especially frantic and we ended up taking both kids to the car. Once they were safe in their carseats they actually didn’t mind the fireworks as much. Introducing them to fireworks in a slightly more low-key environment was a good move with our sensitive kids. I’m just glad we didn’t take them to the city fireworks were there would have been a lot more people and our car would have been much farther away.

Light It Up Blue

Light It Up Blue

I was offended the first time someone suggested Cooper might be autistic. How dare this speech therapist make such an assumption after observing him for 30 minutes? Cooper was mellow, smart, and adored people – he definitely wasn’t autistic. The second time it was suggested that Cooper was autistic I did my best to be strong. “Yeah, we were thinking we should look into that,” I said focusing all my energy on keeping my voice steady. I sat across the table from the school district’s Child Find team, all of us perched awkwardly in miniature preschool sized chairs. When the team member I’d connected with the most started to push the box of tissues across the table, something I’m sure she’d done countless other times for countless other parents, I dissolved into an embarrassing, sniffling heap of tears. At the end of January, when Cooper was officially diagnosed with Autism Spectrum Disorder (ASD), I was perfectly composed and eagerly said, “Okay, what’s our next step?”

as_naam2014_badge_250x250_webready_1April is National Autism Awareness month and today is World Autism Awareness Day where we’re encouraged to “Light it up Blue” and shine light on Autism. We have definitely become more aware lately. We’ve just started opening up about Cooper’s diagnosis and reactions range from painfully awkward to fully supportive. We can only speak for our own experience, but we’d like to shine a little light on our journey and what we’re learning about Autism. As a disclaimer to all my worrying mom friends: Don’t freak out about your kid. They’re probably fine, but if it turns out they aren’t, I’d love to talk.

Light it Up Blue

It’s been almost a year since we started investigating Cooper’s speech delay which eventually sent us down the path to an ASD diagnosis. It has been quite the journey encompassing a wide range of emotions. We’ve learned a lot about the Autism Spectrum, a spectrum which I like to think we are all on.*  There is a lot of concern about the increasing prevalence of ASD, especially with the most recent CDC report, but the increase doesn’t just mean that it’s more prevalent. The way we diagnose and our willingness to be diagnosed is changing and that isn’t necessarily a bad thing. Even just ten years ago Cooper may not have been diagnosed with ASD and while in some ways that would have been nice, it also means he  might not have been eligible for the services he receives. There is still a lot of stigma surrounding autism, but I find ASD to be extremely fascinating. While it originates in the brain, it manifests differently in every kid with no two cases being exactly the same. Because it is a spectrum it ranges from not manifesting at all to being extremely severe. Noel and I are currently taking a class with several other parents of ASD kids and it’s crazy how different all the kids are. Some kids don’t talk at all, some struggle significantly with sensory and/or behavior issues, and some, like Cooper, might have just passed as shy or difficult in another generation.

It’s hard to sit and listen while a professional lists all the areas your child is behind in, and I don’t wish that experience on anyone. It can make you feel like an awful parent, even when that is far from the truth. Research is still being done to discover the exact cause of autism (and there are a lot of theories out there both scientific and fear based), but more and more studies suggest it’s something that happens before a baby is even born. While there are certain risk factors that have been identified (advanced maternal age, not taking prenatal vitamins, maternal illness during pregnancy, smoking during pregnancy, etc) most of them aren’t even possible reasons for blame in our situation and truthfully, I’m not looking for something to blame. The only even close to plausible “explanation” is recent investigation into the link between autism and air pollution since we did live in inverted Logan, UT while I was pregnant. However, I also know at least ten other women that had babies within a few months of Cooper’s birth whose kids are fine. This isn’t necessarily true for all ASD cases, but at least for us, I’m pretty sure there wasn’t much we could have done differently. I’m a big believer in the idea that “things happen for a reason” and although I know things will be (and are) a little harder because Cooper is on the spectrum, I think Cooper was meant to be this way.

Almost every parenting book I’ve read on autism has a really depressing chapter titled something like “Rebuilding Your Dreams” where it talks about creating a new vision of who your kid is going to be. I’m sure that chapter is really comforting for some parents, but I generally skip it because it gets me too fired up. While we all certainly have hopes for how our kids will turn out, can any of us really build their dreams? That’s for them to do. I’m not in control of Cooper’s dreams and I never was. Having a kid on the spectrum has just given me that reality check earlier than most parents. I often feel lucky that  Cooper is so “high functioning” as they say, but no child and no parent should ever be told to stop dreaming about what’s possible. Lately, I’ve been drawn more than ever to stories about people with supposed “disabilities” doing far more amazing things than those of us who are “normal.”  Early on in the diagnosis process a friend recommended I watch Temple Grandin and I remember feeling quite comforted. Even without all the therapies we have today, Temple went on to do great things in large part because her mother never gave up on her and never curbed her dreams. Cooper is still really young, so I really have no idea where he’ll end up, but even if his dream is to just be a normal guy with a career and family I know he’s capable of it and Noel and I are here to help him. Ellen Notbohm, an author and parent of a child with autism, said, “autism itself is not awful. Not understanding it, not having people around you who understand it, not getting the help that is surely out there for your child – that can be very awful.”

When Noel and I met with the team that diagnosed Cooper to hear their final verdict they gave us the book Ten Things Every Child with Autism Wishes You Knew. As soon as we got home I cracked it open. The first chapter starts “I am first and foremost a child. I have autism. I am not primarily ‘autistic.'” I couldn’t read any further because by that point I was sobbing. After months of focusing on this “problem” Cooper has, it was so nice to be reminded that Cooper’s autism is only a part of who he is. It doesn’t take away the fact that he’s contagiously happy, generally polite, clearly intelligent, and an all-around-sweetheart. Sometimes Cooper is difficult because he’s on the spectrum, but sometimes he’s difficult because he’s a three-year-old. If I could teach anyone anything about Cooper and autism in general, that point is what I would want them to know. (Here’s a summary of all 10 things for those interested.)

When we talk about autism we tend to focus on all the things that are considered deficiencies, but just as all of us have strengths and weakness, individuals on the spectrum also have strengths and they often stem from their autism. There’s even a school of thought that if the autism gene didn’t exist many wonderful things like Mozart’s music, Van Gogh’s paintings or all of Silicon Valley wouldn’t exist either.  At the end of the book Ten Things Every Child with Autism Wishes You Knew this last advice is tacked on:

“View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, love me for who I am, and we’ll see how far I can go.

Cooper sees the world through a different perspective than most of us do, but that isn’t always a bad thing. There are things that are and will be rough for him and by default for us because we’re his parents, but he’s our Cooper and we wouldn’t trade him for the world.

Lastly, if I could give you any advice on how to talk to the parent of a kid on the spectrum, please don’t tell them how sorry you are. Those particular words (no matter how well intentioned) can crush a parent’s heart a little because if they feel anything like me, they aren’t sorry that their child came into their life. Instead, offer your help, give them a hug, tell them something great about their kid, or tell them they’re doing a great job and to keep fighting the good fight. We have been lucky to have many wonderful people respond in those ways and I hope those types of reactions can become the only ones.

*The use of the “spectrum” as a diagnosis is actually fairly new. In May of 2013 diagnoses like Asperger’s and other autism disorders that were previously viewed as distinct subtypes got rolled up under the umbrella term “Autism Spectrum Disorder” (ASD).