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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.

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.

A letter to My Firstborn

A letter to My Firstborn

A few days before you were born.
The day before you were born.

When I went into labor with you I was completely at peace. Yes, you were technically preterm and yes, I’d never been through labor and knew considerably little about motherhood, but deep down in my budding momma heart I just knew that everything was going to be okay. I didn’t rush to the hospital or even wake your dad, but just spent a few quiet hours with you in the pre-dawn. The two of us peacefully laboring together before all the hubbub began. Today, even though I’m constantly trying to figure out ways to strengthen your perceived weaknesses in communication, I realize what a gift it is that the two of us can just sit and be. Words may never be your forte, but there is strength in quiet. As Susan Cain says, “There’s zero correlation between being the best talker and having the best ideas.”

Holding you for the first time.
Holding you for the first time.

You were so excited to come into this world, racing in weeks before your due date with a labor much quicker than most women’s first, but then at the last second it was like you panicked. All the Hippie books I’d read hinted at magical slip n’ slide birth moments, but with you it was two exhausting hours of sheer force exertion on my part before you finally made your appearance – your brand new head all scraped and bruised from our struggle. Five years later, you and I still have these moments where you freeze and I push you out into the world, but I’m learning to prod more gently and be more patient. It’s less agonizing for both of us.

Smitten
Your Grandma Cindy did a great job of photographing you, but if you look close you can see the scab and bruise on your head.

They didn’t let me hold you immediately because your premature nature posed risks to your health. I waited anxiously until the doctors determined what I already knew: that you were perfect. When they placed you tenderly into my arms your dad and I looked at each other, happy tears welling in our eyes, and felt more complete than we’d ever felt before.

grad family

Your timing was terrible. Your dad missed a final to be my side as we welcomed you into the world and you and I succumbed to a state of delirious exhaustion instead of attending his graduation. But what we didn’t realize at first, was that your timing was also perfect. Retrospect shows how family visits, job interviews, and a big move all fit perfectly into place around your little puzzle piece. You taught us, and are continually teaching us, that things don’t always happen the way you hope, but they happen in ways that are better for you in the long run.

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I was so worried about having a boy and what sort of roughness that would introduce into my life, but you’ve always had the sweetest spirit about you. You were the first child, grandchild, and nephew and you softened all of us. Your aunts, who didn’t particularly care for children, and your angsty teenage uncles all held you in gentle awe. Even my dad, your grandpa, the man who schooled me in the art of sarcasm, melted into a puddle of coochy coos at the sight of you. Everyone that meets you remarks on this gentle quality you have. It’s possibly one of your biggest vulnerabilities, but I also think it’s one of your biggest strengths.

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Now you are almost five. A full-fledged kid headed to kindergarten in the fall. I worry about you more than you will probably ever know. I worry that I’m not doing enough for you or that I’ve turned you into a science project with therapists for friends. I worry about whether other kids will be nice to you and how you’ll do in school. When I spiral into these worry cycles I’m overlooking something very important: how strong you are in your gentle way. Instead, I should think back on the day you were born and remember what I knew from the beginning, that in your own way, you are perfect and everything is going to be okay. I promise to try and remember that more often.

audrey3

Love,

Mom

Nutella consumption linked with autism

Nutella consumption linked with autism

autism_nutellaAfter an exhaustive meta analysis of many factors that could potentially be causing the spike in Autism rates in recent years, I have found the one factor that is alarmingly correlated: Nutella consumption. Well, specifically interest in Nutella as evidenced by Google searches, but I think it’s safe to say that increased Google searches of Nutella means increased consumption. My scientifically proven* hypothesis is that increased Nutella consumption during pregnancy causes an excess of sugar and hazelnut compounds in the bloodstream of the mother that pass on to the fetus and alter the chemistry of their developing brain. The full research study, co-authored with Dr. Mr. Andrew Wakefield, will be published soon** in the medical journal The Lancet.

 

*not using the actual scientific method

**not published at all

For actual interesting cutting edge research on autism, see this TED Talk.

 

Light It Up Blue 2.0

Light It Up Blue 2.0

Autism Speaks Light It Up Blue

It’s World Autism Awareness Day! Here’s an update of our experiences since my light it up blue post last year.

The last year by the numbers:

  • 2,000 miles driven for autism related therapies and appointments
  • 5 therapists worked with
  • 1 autism center quit
  • 2 IEP teams collaborated with
  • 1 therapy graduation (occupational therapy)
  • 1 gajillion forms filled out
  • 6 seasons of Parenthood watched

The past year has been a learning experience. We’ve learned that not all autism centers are created equal and that sometimes driving farther to see a better therapist is worth it. We’ve been touched by friends that volunteered their time to watch our kids so we could attend various meetings and classes. We’ve been grateful for good insurance and that we live in a state that has health insurance mandated autism treatment. We are slowly building our “village.”

National Autism Awareness

To many outsiders, we seem like a completely normal family since right now Cooper is often able to hide behind shyness and being young. When I tell people he as an ASD diagnosis half the people are surprised while the other half realize that was the thing they couldn’t quite put their finger on. We aren’t completely sure whether it will become more or less obvious that he’s on the spectrum as he gets older – only time will tell. Often, even we go long stretches where we forget he has a diagnosis, but it always has a way of sneaking up and slapping us in the face. Sometimes it happens when someone mistakes him for a younger child or when a friend posts about the hilarious thing their kid just did. And often it happens when I pick him up from preschool and other kids excitedly spout off paragraphs about what they did as I ask Cooper simple questions based off the cheat sheet his teachers give me every day. In those instances, it’s so easy to get discouraged and forget how much progress he’s made.

Probably one of the hardest moments of the year was when Cooper participated in his first Primary program. It’s one of the best Sundays of the year where the kids provide all the talks and music for our main church meeting. We knew this would be a challenge and were nervous about him being on display for everyone, but were optimistic. Cooper is familiar with many of the people in our church community and the Primary president, a family friend, would be helping him with his part so we really thought we might be able to pull it off. We practiced the part at home and Noel attended the two rehearsals. Additionally, we took him to the church when no one was there and let him practice talking into the microphone and saying his part to an empty room. When the big day came, we held our breath. Every kid (including the ones his age) said their part in the microphone and sang songs in the funny way kids do. Their parents beamed. When Cooper stepped up to the microphone he just stood there stiffly with a goofy grin on his face and scrunched up eyes. When they sang, he flapped his arms, picked his nose, and stared into space. Afterwards, people told me, “It was so cute the way he waved his arms up there!” “He’s shy, but with more practice he’ll get it!” They were all well meaning. I did my best to smile and not cry or yell, “You know he has autism, right?!?!” It could have been worse, it really could have, but still our heart ached that we couldn’t just blend in. And the hardest part?  He knows every word to those songs and probably had his part memorized.

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The kids have no idea what autism is or that Cooper has an ASD diagnosis. Right now, Cooper just thinks he has special adult friends with cool toys. Honestly, Ellen will probably figure it out before he does. One time when I took Cooper to speech, Ellen turned to him and said, “I’m going with [the therapist] and you’re going with mom, okay?” I told her that’s not how it works, that we come here for Cooper to see his speech therapist. She seemed fine with the answer, but it’s only a matter of time.

Even though there are hard and frustrating moments, sometimes autism can be funny. Ellen was being particularly saucy one day and I asked her, “Are you being a sassy pants?” She replied with, “I’m not being a sassy pants! Cooper’s a sassy pants!” Cooper, who was flying an airplane around the kitchen, paused, looked down at his pants and then looked at me with a puzzled expression. Clearly, his pants weren’t sassy. Through it all, he’s a genuinely sweet kid that’s actually quite intelligent. It’s just unlocking it that’s sometimes the challenge.

As a parent of a child with ASD, we often feel a huge responsibility. I know every parent worries about doing the right things to help their child succeed, but when you have a kid with a disability it’s so easy to feel that if you don’t try the right diet or therapy or eliminate the right chemicals from your lives, your child, and by extension you, will be a failure. It’s a challenge to figure out the balance of letting Cooper be himself (and being okay with it) and getting him the help he needs to thrive in this world. We have the luxury of his autism not being incredibly obvious, but with that comes the burden of figuring out how to share this fact with others. I personally struggle to know how and when to mention his autism, not because I’m embarrassed, but because on some level I feel like I’m betraying him, but at the same time I feel like I’m betraying him if I’m not open about it. I just don’t want the subject of autism to be his awkward life-long icebreaker; I want people to see him as Cooper first and foremost.

LIUB

Autism is a hot topic right now. While in some ways I’m glad it’s getting attention, sometimes the theories get tiring. As a parent of an ASD kid it can be frustrating to see your child turned into a statistic that gets thrown around whether it’s in scientific studies or stupid articles people share on Facebook. The next time you read an article about autism, just take a second to remember that people stand behind those numbers and that correlation doesn’t always equal causation. (Honestly, this is good practice for most statistics.) I don’t claim to be an autism expert, there’s a lot I’m still learning, but if you ever have a question I’d love for you to ask. Really.

They have a saying in the autism community that “If you’ve met one person with autism, you’ve met one person with autism.” Our experience is ours only. Some experiences are harder, some are easier, but for most of us, it’s a crazy combination of hard and easy.

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The Button

The Button

Intercom

The door at Cooper’s preschool is guarded by a buzzer. It protects the little ones from the dangers of the world as it allows the front desk to scrutinize those outside before deciding whether or not to grant them entrance. Or at least that’s the idea.

Every morning kids race to the building – elbows out, heads down, focusing like they’ve never focused before. When the “winner” smugly presses their chubby finger to the button, the rest of the kids stamp their feet and collapse on the sidewalk in fits of tears. All the parents politely laugh, then hold the door open for each other cheerfully telling their kids, “Maybe next time” or giving mini lectures on how we don’t want to unnecessarily bother the ladies at the front desk.  A few kids are dragged in, the rest shuffle in petulantly, but by the time the classroom opens all have forgotten their disappointment.

Here’s the thing about my son, he’s obsessed with buttons and he doesn’t forget anything. I’d always rigged the game for him, surveying the parking lot and slowing or quickening my own speed sometimes taking an extra long time to unbuckle Ellen from the stroller to avoid any competition. The method was effective, but it couldn’t work forever. The day a kid snuck up on us and Cooper came in second place, I took a deep breath and prepared to teach him a hard life lesson. I used that tired line about “next time” and dragged him into the building. He summoned all the strength his four-year-old body could muster and tried to drag me back outside forlornly crying “the button, the button!” in a manner that may have been deemed appropriate for the loss of a loved one. As the other parents tried to disguise their gawking, I used my calm adult voice to explain the injustices of the preschool world.  He continued to wail as children went to class, parents left, and I sat there trying to be the sensible parent I’d seen everyone else be. The classroom teacher said to just leave him and that he’d calm down. “Lots of kids have bad days like this.” Huge tears rolled down his cheeks and he clawed her arms as she carried him to the “cozy corner” to calm down. It was raining that morning and the seat of my pants was covered in mud from sitting on my haunches so I could be on his level.  I just stood there, damp and muddy, holding my squirming two-year-old, listening to his howls turn to whimpers, and  wondering if I was unfit to be a parent. When I couldn’t hear him crying anymore, I left in embarrassment, grateful for the rain as it hid the tears that streamed the whole way home.

When I picked him up he uncharacteristically didn’t ask to bring his water bottle home, which is one of the things he’s usually very particular about. I asked him several times if he wanted to get it and told him, “Once we leave the building we can’t come back for it.” The second we left the building he said, “Water bottle!” and ran towards the buzzer. My foot grazed over the stroller brake without actually making contact and I ran towards Cooper, angry that he’d played me.  As the stroller rolled towards a mail truck and Cooper’s finger reached for the button I had one of those slow-motion-out-of-body experiences.  I saw frazzled me, upset Cooper, and endangered Ellen all playing our role in a comical disaster. This wasn’t working. The mailman intercepted the stroller inches before impact and after thanking him profusely I collected my crafty son (who was more than pleased to push the button for the mailman) and headed home.  I laughed, albeit a little crazily, the whole way.

The next morning a mom was leaving when we arrived. She held the door open wide and said, “Sorry, buddy! You don’t get to press the button today!” I gave her a look that I haven’t used since one of my high school students asked me if I was kinky  and exasperatedly said, “Please, just let him press the button.” I could tell she thought I was a terrible parent, a pushover with no sense of discipline, but I didn’t care. Cooper, oblivious, pressed the button and skipped into school.*

I’m sure I’m looking down a long road of people disapproving of my parenting. I don’t expect I’ll be winning any awards and most days I’m satisfied with survival. I do believe that Cooper should learn that he can’t get everything he wants and we really do try to teach that, but the button battle just isn’t worth it and I have to learn to pick my battles. Interestingly, since I stood up for my child’s button pressing rights, I’ve noticed a few other parents’ hearts sink as I hold the door open for them and I’ve said, “Hey, do you want me to close the door so your kid can press the button?” It’s amazing how their eyes light up, almost as much as their kids and I simply say, “I totally get it” and shut the door.

* After this incident, I actually spoke with the ladies at the front desk and they said they don’t mind if kids press the button. They actually think it’s kind of cute how much the kids all care about it. Also, I’ve softened my approach to allowing my kid  to press the button so I’m much more polite than I was in this encounter.

Mormon Message About Autism

Mormon Message About Autism

I swear the people that work on the Mormon Messages are evil righteous geniuses. I feel like almost every one that I’ve seen has made me teary-eyed, but this one in particular had me full out crying. I guess you could say it struck a chord.

Ellen and Cooper are already good friends (they’re also excellent at squabbling) and I’ve had several people tell me they’re lucky to have each other and that they’ll help each other grow in different ways. I think they’re right.

PS I also found this interview about the making of the movie interesting.

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).