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1st Day of School, Etcetera

1st Day of School, Etcetera

This year, the first day of school was completely bananas. There was such an overload of emotions that I was pretty much numb. (And for most of the day Noel literally was numb.) But, let’s back up a minute.

Ortho P Dick
Noel has been using the dictation feature a lot lately. It has it’s quirks.

The Tuesday before school started, Noel had an appointment with the Orthopedic Surgeon. We knew there was a strong possibility that his arm would need to be reset since the bones didn’t look like they matched up in the x-rays from the ER, but we were honestly surprised when the surgeon recommended surgery. They wanted to do it as soon as possible before the bones started to heal improperly and of course the next surgery day was Thursday which was also the first day of school. It was a busy couple of days going to school open houses, getting Ellen’s hair fixed, and getting everything ready for the first day of school/surgery.

Kids ready to go to school
Kids ready to go to school
They were pretty excited, Ellen especially.
They were pretty excited, Ellen especially.

Thursday morning everyone was up early and anxious for various different reasons. First we headed to Cooper’s school for the first day of school parade. Cooper’s entire team was there waiting for us and said they’d be keeping an eye on Cooper for the next several days as he transitioned to full day school.

Our big first grader.
Our big first grader.
Waiting in line with his class.
Waiting in line with his class.

Ellen was so anxious to go to “real preschool,” so the second Cooper’s class walked into the building we left and headed to her school.

Ellen ready to head into class.
Ellen ready to head into class.
Ellen next to her cubby.
Ellen next to her cubby.
Ellen settled right in and started making friends.
Ellen settled right in and started making friends.

After dropping her off, Noel went home to do some meditation and I headed to the pool so we could both find some level of calm before heading to the hospital.

Bones

It was a little hard for my mom heart to not be there when my kids were done with school, but I think it would have been even harder to not be there for Noel. They put a metal plate and several screws in Noel’s wrist to line everything up. The surgery went as well as could be expected, but we were there for quite a few hours waiting for him to be both alert and not nauseous enough to go home. The kids were so excited to tell us all about their day, but a little mystified as to why Noel was so out of it. It was pretty much time to go to bed when we got home and when the kids protested I told them they needed to go to bed because they had school again the next day. Ellen was super excited about that, but Cooper wasn’t. After thinking about it he grumpily said, “Fine, but after school we’ll have lunch and play with my toys?” When I told him he’d be going full day every day now he said, “What?!?! Every day!?!?” Poor kid, it might be a rough 12 years.

Noel's hand, still orange from surgery. He jokes it's his spray tan.
Noel’s hand, still orange from surgery. He jokes it’s his spray tan.¬†

I wish I had some neat way to tie up this blog post or something philosophical to say, but the recovery part of this story isn’t over. Noel isn’t able to do much yet which has its challenges and frustrations for everyone. (Imagine not being able to do up your own pants or sit through church without your hand looking like a blown up latex glove. Then try to explain to your kids why they pretty much can’t touch Dad.) So, let’s just end this post with some counting of blessings. We’re grateful for amazing insurance that is making what could have been a financial burden manageable, for friends that watched our kids, and for the scouts that are going to move that giant pile of mulch that of course ended up being delivered this week. Lastly, I know they look dorky, but if you go rollerblading consider wearing wrist guards ūüėČ

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!

 

Cooper Turns 6

Cooper Turns 6

This year, Cooper was sick the week of his birthday. He had a rough couple of nights with a croupy cough and I kept him home for two days. The day before his birthday, Ellen was inconsolable from the moment she woke up. She had a fever and just wanted to be held. I gave her medicine and it finally seemed to kick in after about an hour when she became deliriously happy. After 45 minutes she crashed again and fell asleep in my arms.

Poor Ellen

Generally, she’s the type of kid that doesn’t get slowed down by a cold,* so her behavior was concerning to me. I called our HMO and they were able to get us in that afternoon. Of course, the appointment fell during the period of time when her second round of pain medication was working and all the nurses seemed somewhat skeptical and I may have felt somewhat vindicated when her rapid strep test came back positive. ¬†They ran a test on Cooper too, but it came back negative. Since strep doesn’t cause coughs, we figured he just had a cold and nothing more. They said they’d send it to be cultured just in case and let me know if the longer test came back positive. We went home and continued birthday preparations alongside house sanitizing.

Birthday Morning

The morning of his birthday, he seemed pretty healthy when he woke up. It was the first night he hadn’t woke up with a coughing fit and he was really excited to go to school. We let him open a new outfit and a game from grandma before going to school.

Kabobs

He’d chosen to take berry and marshmallow kabobs for his birthday treat and there was no way he was going to miss sharing them with his friends.

Scootin' to School

He really wanted to ride his scooter to school and I decided to let him even though I knew we’d be late. The secretary is pretty used to giving us tardy slips anyway . . . When we walked into the classroom several of the kids yelled, “Happy Birthday Cooper!” and he just beamed from ear to ear.

New Shoes

We’d bought Cooper new shoes for his birthday, but they didn’t fit. He was pretty upset that I wouldn’t let him wear them to school, so I told him we’d try to find some that fit when he was done. As we were walking into the store, I got a notification that the long strep test had come back positive and I just had this image in my mind of him handing out fruit kabobs to every kid in his class . . . We quickly tried on shoes and I even let him by the blue ones he wanted even though I wanted to buy the black ones (because they were cheaper).

Connect Four

Back at home, we played one of Cooper’s new games while we waited for the doctor to call, then swung by the doctor’s office/pharmacy to get Cooper his antibiotics. **

Present Poser

Planes!

Marble WorksWhen Noel came home from work we let him open the rest of his presents from us and from the family. Pretty much every gift was met with excitement.

Tres Leches Cake Blowing Out Candles

We had empanadas for dinner followed by tres leches cake. (Happy Cinco de Mayo!) Every time someone asked Cooper what kind of cake he was going to have for his birthday he would say, “The one with cherries!” because of the picture of this recipe. We made sure to buy maraschino cherries for the occasion.

Pi√Īata Helper

We’d given Cooper the option of going camping or having a party with friends for his birthday. I really thought he would choose camping, but he was very excited about having a party with friends. Even though we didn’t invite everyone in his class,*** I was still kind of overwhelmed by the guest list. ¬†Cooper has gone to a couple of birthday parties and they’ve all been pretty fancy. (Think: rented petting zoos, build-a-bear, and playing sports at an indoor sports complex.) I didn’t even entertain any thoughts of competing with that for something like a child’s birthday party. Our plan was to draw with sidewalk chalk, blow bubbles, play some games with balloons, beat a pi√Īata, and have cake.

Bubble Madness

The weather of course, had other plans. An hour before the party there was a torrential downpour complete with hail and thunder. Luckily, I had a backup plan. We kept the bubbles on the porch and drew on black construction paper with sidewalk chalk at the kitchen table.

Balloon Madness

I cleared as much as I could out of the main room in the basement for balloon games. It was a little bit crazy to have 10 kids running around the house, but the kids had a lot of fun. I like to call it controlled chaos . . .

Mike Wazowski

Mike Wazoski pi√Īata

We’d hoped to do the pi√Īata on the porch, but by the time we got to pi√Īata time thunder was booming again and we decided it was best to stay indoors. I made a homemade paper mache pi√Īata that looked like Mike Wazowski from Monster’s Inc. It held up really well to the hits of 12 kids. ¬†(Ellen and a friend joined in.)

Pi√Īata Goods

I made little fabric bags out of scrap fabric (really easy) and put homemade play dough, homemade robot crayons (kids helped me make these), and skittles in each bag. Then we put all the bags in the pi√Īata. I thought this would cut down on the fighting that would occur when the pi√Īata broke, but not all of the little boys were able to process that idea. We figured it all out in the end though.

Blowing Out Candles Dulce De Leche Cake

Cooper chose a Dulce de Leche cake for his birthday. I don’t think the other kids were used to such fancy cake and a lot of it got thrown away, BUT I have no regrets about making it because I got to eat some of it and I have very high standards when it comes to eating baked goods.

Exhausted

This was us after the kids left. I should mention that we also ran 11 miles that morning, so we were pretty much exhausted. I think Cooper really loved it though and that’s what matters most.

New Toy

*One time, I took Cooper to the doctor because I thought he might have an ear infection. While we were there, the doctor looked at Ellen’s ears too and discovered she not only had an ear infection, but two. While we waited at the pharmacy she ran around like a crazy person and almost toppled a display for online prescription renewal. My dad happened to be with me and I remember him saying, “If this is what she’s like with a double ear infection, are you sure you want to get her the antibiotics?”

** It’s always a tiny bit stressful to me when both the kids are on antibiotics because Ellen is allergic to the ones Cooper takes so I have to be extra careful not to mix them up.

*** One day after school Cooper was listing off names of people that said they were going to come to his party. I panicked a bit because we hadn’t invited everyone and I didn’t want him talking about the party at school. I told him, “Buddy, you can’t talk about your party at school. We didn’t invite everybody and we don’t want the kids to feel bad.” He started to cry and told me very firmly, “Mom, they’re not bad kids, they’re good kids!” Sometimes the literalism of autism can be fun. I told him, “You’re right, they’re good kids. I meant, we didn’t want them to feel sad.”

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.

Golden Birthday

Golden Birthday

I get pretty excited about birthdays, but especially excited about birthdays with special dates like a golden birthday or the time¬†Noel had a birthday on 12/12/12. Needless to say, I’ve been looking forward to Cooper’s fifth day, probably since the day he was born. This is also the first year that Cooper has anticipated his birthday. Ever since Ellen’s birthday¬†whenever the subject of birthdays comes up he would¬†tell us, “My birthday’s next!” The Sunday before his birthday they sang to him at church and gave him a little gift. When we picked him up he beamed, held up all five fingers, and whispered “I’m five!” When I broke the news to¬†him that it wasn’t actually his birthday he was pretty upset, but then when I showed him the calendar and talked about the next couple of days of birthday fun he brightened up.

P5040052

About a year ago I learned that the fire stations in our district do free tours if scheduled four weeks in advance and I put a reminder on my calendar to call and schedule the tour a month before Cooper’s birthday. Once the date was set I prayed there wouldn’t be a fire since fires would take precedence over the tour. (Then I felt bad and prayed no one would have to be involved with a fire as it seemed less selfish . . . ) We invited a handful of friends from church and preschool and started the party at the fire station.¬†The firefighter that led our tour was really great with the kids. We had one of those small world moments when he noticed Cooper was wearing a CTR ring and told us that he too was LDS¬†and used to attend meetings at our building when he lived in the area. After the boys had their fill of hoses¬†and trucks, we headed back to our place for lunch. I let Cooper choose the menu and we ended up having¬†Mac n’ Cheese and Churro Cupcakes.

The day after the party was Cooper’s actual birthday.

CincoHe woke up early and perched on top of the couch grinning over his presents, waiting for Noel to get back from a run so he could open them. Our schedule was pretty normal (school and speech therapy), but he was excited to take fruit kabobs to school, show off some of his new toys to his therapist, and have a “special” lunch at Costco.

That night we finished our fiesta with fish tacos and chocolate tres leches cake. I thought for sure he’d be completely worn out from all the excitement, but about an hour after bedtime I heard Woody announce, “There’s a snake in my boots!” and went into his room to find him huddled under the covers with several of his new toys.

Tres LechesBecause we hadn’t done enough celebrating, I took him to the zoo the next day where he got his free birthday ice cream cone and ride on the carousel. I was kind of glad when the birthday celebrations were finally over, but I really did love what a kick Cooper got out of everything. Even though mothering him sometimes stresses me out or makes me emotional, I’m truly blessed to be his mother.

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.

DSCN0856

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

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.

Our Four-Year-Old

Our Four-Year-Old

When you live far away from family, birthdays tend to stretch out over a couple of days as the gifts, cards, and phone calls trickle in. Fruit is still his favorite food, so Cooper was pretty excited when this edible arrangement showed up from Noel’s Aunt Brenda a couple of days before his birthday.

Edible Arrangement He’s been coveting the Thomas the Train and Cars 2 rugs at Lowe’s. Every time we go there he’ll drag us to that section of the store (the kid also has a pretty good memory) where he’ll stare at the rugs longingly and throw a fit when we tell him it’s time to leave. Grandma Glenna gave us some money for a rug and we took him to make the purchase a few days before his birthday. He debated for awhile before choosing the Cars rug and grinned from ear to ear as he carried it to the checkout.

Cars RugOn his birthday he woke up to a living room with gifts and balloons. He kept saying, “It’s my birthday” over and over again as he tore open the packaging.

GiftsWe had a fun outing at the park scheduled with some of our friends. We brought some of Cooper’s favorite treats (popcorn, applesauce, and flavored milks) to share.

Park!

Unfortunately, we had to cut our playdate short to get Ellen to a doctor’s appointment. She’d woken up with a head to toe rash and we needed the doctor to confirm what I suspected was¬†an allergic reaction to amoxicillin. (I’m allergic to it too, so I wasn’t super freaked out.) Fortunately, Cooper was really good about leaving the park when our time was up.

Spotted Baby
I kept telling everyone at the park, “Don’t worry, it’s not contagious!” The rash actually looked worse on day two, but I didn’t take any pictures.

After our trip to the doctor we picked up Noel and went out to lunch and made a quick run to Target for Benadryl. Back at home, Ellen took a nap and Cooper and I made his birthday cake. He really loves helping and I’m trying to let him even though I don’t always find him helpful.

Cake MakingWe had Noel’s cousin, Jaimie, and her husband Wolfgang who are recent Denver transplants over for dinner. They were even nice enough to bring Cooper a present. It combined two of his favorite things: Legos and Thomas the Train. We think they might be vying for the title of “The Favorites.”

Jaimie and WolfgangFinally it was time for the cake and Cooper couldn’t have been more excited.

Birthday CakeHe even blew out all the candles by himself. We made sure his slice of cake had lots of berries.

Blowing Out the CandlesCooper has really grown a lot in the last year. He’s talking more and mastering a range of skills from riding his bike to recognizing letters. He’s really good at puzzles and has been praised for his “math skills” so perhaps we have an aspiring engineer on our hands.¬†(Apparently pattern matching is considered math at the preschool level, who knew?)¬†I know I’m a wee bit biased, but he¬†really is one of the sweetest kids you’ll ever meet. Happy Birthday Cooper, we love you!

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‚Äôt lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won‚Äôt happen without you as my foundation. Be my advocate, be my friend, love me for who I am, and we‚Äôll 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).

Behavior Issues

Behavior Issues

The other day, I was filling out some paperwork to start the process of getting Cooper into some therapies and I had to go through a list and check all the behavior issues he struggles with. As I went through the list I noticed something interesting.

Disrobing (removing portions/all clothing)

Cooper – No, Ellen – Yes

We are constantly finding Ellen naked around the house. We especially have to make sure to check on her after she’s fallen asleep because she apparently prefers to sleep nude even though she isn’t potty trained.

Elopement (running away)

Cooper – No, Ellen – Yes

Cooper riding his bike home from the park. He like to lead, but never crosses streets without help.
Cooper riding his bike home from the park. He like to lead, but never crosses streets without help.

Frequent screaming/crying

Cooper – No, Ellen – Yes

The other day, Ellen climbed into her stroller and screamed and cried. She didn't want in, she didn't want out.. Cooper kindly brought her a puppy in hopes that it would calm her.
The other day, Ellen climbed into her stroller and screamed and cried. When I tried to unbuckle her she screamed louder. Cooper kindly brought her a puppy in hopes that it would calm her.

Noncompliance/refusal

Cooper – Sometimes, Ellen – Often

I put on Sesame Street for the kids one morning while I did my hair. Apparently it wasn't entertaining enough for Ellen so she took all the magnets and papers off the fridge and even tore apart homemade magnets from church and our class.
I put on Sesame Street for the kids one morning while I took some pictures for my shop. Apparently, Ellen didn’t want to watch Sesame Street because she came upstairs and took all the magnets and papers off the fridge and even tore apart all the homemade magnets.

Physical aggression (hitting, kicking, biting, etc.)

Cooper – No, Ellen – Yes

Cooper kindly "making me eggs for breakfast."
Cooper kindly “making me eggs for breakfast.”

Property destruction

Cooper – No, Ellen – Yes

One morning while I was doing my hair Ellen got a carton of strawberries out of the fridge, took one bite out of every strawberry, and tore open a stack of mail I hadn't put out yet for pick-up.
One morning while I was doing my hair Ellen got a carton of strawberries out of the fridge, took one bite out of every strawberry, and tore open a stack of mail I hadn’t put out yet for pick-up.

Obsessive/repetitive patterns

Cooper – Nothing concerning, Ellen – Says whatever she wants over and over again until she gets it, repeatedly destroys everything she touches.

Ellen pouring baking soda all over the blender.

Self-injurious behavior

Cooper – No, Ellen – Accidentally, all the time.

Ellen precariously standing on a chair while playing with cars at a local auto shop.

Verbal aggression (threatening, swearing, etc.)

Cooper – No, Ellen – It isn’t always clear what she’s saying, but when she gets mad it sure sounds aggressive.

Cooper on top of a climbing wall at the park patiently waiting for me to notice.
Cooper on top of a climbing wall at the park patiently waiting for me to notice.

Even though Cooper is supposedly more high risk for behavior problems it seems our “normal” child has more cause for concern. Let’s hope it’s just part of being two.

Proof that Ellen isn't always a monster.
Proof that Ellen isn’t always a monster.