autism awareness month

The Special by jen geigley

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“One day, a talented lass or fellow, a Special one with face of yellow, will make the Piece of Resistance found from it's hiding refuge underground. And with a noble army at the helm, this Master Builder will thwart the Kragle and save the realm, and be the greatest, most interesting, most important person of all times.

All of this is true, because it rhymes.”

Every so often, I feel inspired to write down our life stories. And every time the month of April comes around, I feel it’s important to document the autism stories. Today (April 2) is World Autism Awareness Day. This is our unique story, because every person with autism is different. (And that's what makes this world a beautiful place.)

Autism Awareness Day happens to be very close to the date my son Bowie was diagnosed with Autism Spectrum Disorder three years ago and when this day approaches every year, I can’t help but feel all the feelings. I often think back to those very first days of knowing our little boy had autism and what life was like at our house then.

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The thing that immediately comes to mind from that time period is Emmet. 'The Special' ... the main character in the Lego Movie. When Bowie was 3 years old, the Lego Movie became his first major interest … and borderline obsession. Like most kids who fall in love with a movie, he wanted to watch it over and over again. And if you sat next to him while he was watching, you’d see his lips moving. He wasn’t a clear speaker whatsoever at this age but you could tell that he knew every single word. You could see it in his eyes; the way he concentrated, focused and listened. He was memorizing the whole movie.

We watched him do it.

He’d try to speak along with the characters as best he could, and he'd fit those sounds in ... in perfect unison. He wanted to get those words out. He knew every inflection. He’d copy the facial expressions. In no time at all, he had all of the dialogue completely memorized. And every single action too. He’d stand near the t.v. and perfectly act out every movement Emmet made. Every jump, turn, kick … everything. He could do it without looking. He could copy the characters’ movements perfectly, exactly on time while listening to the movie from another room. Our whole family became mesmerized watching Bowie watch this movie. None of us had ever seen anything like it.

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So we all tried to memorize the movie too. He would talk to us in Lego Movie quotes (this is common with ASD and is called echolalia) and we’d respond back.

“Jumping Jacks, him them! 1, 2, 3. I am so pumped up!”

“Today shall now be known as Freedom Friday... but still on a Tuesday!”

“Croissants? I love croissants!”

“Honey, where are my paaaaaaaaaaaaaaaants?”

He was practicing his language. And we participated in the practice, because it was working. The Lego Movie gave him the confidence to speak. This movie was a BIG deal to him. It was funny, it was engaging. And we knew it was helping. During Bowie’s toddler years, Bo and I honestly did not know if Bowie would ever learn how to talk. He babbled. He didn’t say ‘mama’ or ‘dada’. If he was super into something that seemed to help bring out his speech, we were ready to dive in head-first.

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Predictably, the Emmet Lego mini figure (or mini-fig) soon entered our lives. When we found Lego Movie Lego sets in the store, we had to buy one. As soon as we brought the Lego set home, that Emmet mini figure was in the palm of Bowie’s tiny hand.

And Bowie didn’t let Emmet go for the next two years.

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He took Emmet everywhere. He held Emmet in his hand while he slept. He would cry uncontrollably in sheer panic if he dropped him or if the plastic hair fell off or if Emmet lost a hand. We had to dig for Emmet in muddy, slushy snow. Once, Emmet fell into a sewer. Bowie would carry Emmet on bike rides with Bo and yell out if he had dropped him along the way so they could turn back. We’d spend hours searching for a lost Emmet around the house. And while I completely understand that most kids do this and get attached to a certain toy or stuffed animal, this was different. A whole new level that I had never seen or experienced before. Losing Emmet could bring Bowie down to a crashing halt … for entire week. Or longer. ASD kids can be an extremely sensitive, emotional bunch and we got a crash-course on how completely devastating an Emmet mishap could be.

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We quickly realized we needed replacement Emmets. So we bought our first three-pack on Amazon. This was great because I figured I'd have an easier time keeping the Emmets clean and could carry back-ups in my purse or in our car … whew. But then we realized each Emmett figure came with different facial expressions or features. Some had a red hat, others had the brown hair. One had brown hair and a red hat. And some of them just looked too ‘new’. Bowie would only find certain Emmets acceptable and he really just wanted his old one that had some of the graphics rubbed off (from never letting him go.) He’d stare at each Emmet, turn them around in his hand studying every tiny part of them and then decide if they made the cut or not. Luckily, he became a little bit more flexible with the different Emmets over time and each of these little guys eventually got their turn as the favorite.

By this time, Bowie had started 3-year-old preschool. His teachers quickly learned that Emmet was coming to school with Bowie and would be in his hand all day. I think they eventually worked out a system where Emmet could stay in Bowie’s cubbie while he did school work but that was a process. Even the receptionists in the school office knew about Emmet and if he was ever left behind at school, I could go to the office to pick him up and our little Lego guy would be sitting on the top of the office computer screen, waiting patiently.

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Bowie finished his first year in preschool and went on to 4-year-old preschool. He made great strides. Progress was slow but steady and we were thrilled to see what he was capable of. He had his struggles but was doing well with his numbers, colors, shapes, alphabet and could write his name. He was also becoming an incredible artist.

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By the end of that second year of preschool, Bowie didn’t need Emmet anymore. (It almost makes me cry to type that.) As kids do, he moved on. Sometimes he’d carry a train, a turtle or a dinosaur to school instead and by the time summer rolled around, he didn’t need to always have something in his hand.

Emmet really was 'The Special'. For Bowie. And for our family. Emmet was there for us during that important, sometimes rocky, new autism phase. He was there for Bowie too.

And Emmet taught us some really good things. Quite frankly, he left all of us with some fantastically inspirational messages that will remain ingrained into our brains and lives forever.

Bowie recently started watching the Lego Movie again and to no one’s surprise, he still knows all the words.

Like these.

“You are the most talented, most interesting, and most extraordinary person in the universe. And you are capable of amazing things. Because you are The Special. And so am I. And so is everyone. The prophecy is made up, but it's also true. It's about all of us. Right now, it's about you, and you still can change everything.”

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Perfect squares by jen geigley

Bowie was diagnosed with autism spectrum disorder (ASD) exactly one year ago on 4/4/16. I will always remember that date, even though I am terrible at remembering dates.

That day, I took Bowie to his autism evaluation at Blank Children's Hospital and to make a long story short, was given the ASD diagnosis by our (now) beloved, wonderful Dr. Noble.

After it was over, I didn't know what to do next. What was I supposed to do now? I had a stack of papers in my lap and lots of work to do – waivers to apply for, waiting lists to add our names to and a bunch of things I could not quite wrap my brain around just yet. So I looked at my super cool, brilliant boy ... knowing he was the exact same kid that he had been a few hours before. And decided he deserved ice cream. Maybe we both deserved ice cream. So we stopped by Orange Leaf on our way home. Okay, frozen yogurt ... not ice cream. Close enough.

Later that day, our family went to Target to pick up a couple of things. (What an extremely normal thing to do after such a defining moment in our lives, you say! Life goes on.) Bowie loves to collect the small plastic zoo animals they have in the toy section, so we let him pick one out. At the checkout lane, he was fidgeting with the tag on his animal (because he hates tags) and was urgently saying 'cut it with scissors.'

Almost immediately, our tall, young cashier bent over and cut the tag off the toy animal. He said 'That tag is bugging him, huh.' and proceeded to make lots of comments about the things we were purchasing. Lots of comments. I looked up and thanked him for cutting the tag and he told me it was a special day. That took me aback ... because yeah, it kind of had been a special day for us too. A day that had not exactly sunk in just yet.

He said "Well, today is a square root day, which is really rare. 4 x 4 = 16, 4 is the square root of 16, 4 and 16 are perfect squares, and it's 4/4/16. He went on about this and then I realized ... I was pretty darn sure our cashier was on the autism spectrum. (I later wrote a letter to Target in praise of this cashier and confirmed this.)

I realize this is a completely random, fragmented story, but this cashier could not have been in a more perfect place at a more perfect time. He was a young adult on the spectrum. He worked at Target. (Yay Target, by the way!) And he was just doing his job, but was also incredible and bright and interesting. And he was unintentionally helping me understand and accept a million things all at once. That everything was going to be alright ... now and in the future.

It's kind of the low-lying constant question in the back of every ASD parent's mind ... what about the future? Then you remind yourself to focus on the now. But that question comes back. This cashier provided a bit of foreshadowing I didn't know I needed. Every single person on the spectrum is totally, completely different. But knowing that kind of makes me want to meet them all. Life with autism might not be a piece of cake; it might be different but it will be alright. Bowie is doing fantastic things. And he will continue to do fantastic things.

We've learned a lot this first year. We've had a lot of ups and downs. And we've had a little refresher on square roots and perfect squares. 

 

* photo by Alexandra Crahan Photography

The A-word by jen geigley

Yesterday, our son Bowie was diagnosed with autism spectrum disorder/ASD. And today nothing is different, yet it sort of feels like everything has changed. It's just a word. The A-word. And it might be a tough word to say at first but I think we are just about to break through some doors, help Bowie in brand new ways and discover more about him. We are excited about the future. He's a fantastically cool, intelligent, fascinating boy and I am oh-so-proud to be his mom.

It's a tiny bit ironic that April is National Autism Awareness Month, because our family is feeling very aware. And that is what is pushing me to write this blog post. I'm an autism mom – technically only since yesterday – but really I've been one all along. And while my viewpoint on this might be super fresh, this is the story of the beginning of our journey. We don't feel the need to hide the results of Bowie's evaluation yesterday. We think it's better to share. It's not a scary thing, or a sad thing – it's our everyday. It's so many people's 'normal.' And we are ready to do more for him and learn more about him. Like our amazing doctor said yesterday "Autism is just a word, just a diagnosis but it doesn't change who Bowie is. He's a great kid ... he has a great name."

First off, I have to tell you that Bowie is my heart. If you know us or have seen us in person, you already know that he and I are stuck together with super glue. Pretty much all of the time. He is extremely cute and funny and sweeter than sugar. He spontaneously showers me with hugs. He will hold my face in his hands and smoosh his cheek into my face. He is very smart, caring and has memorization skills that will blow your (average) mind. He used to be very quiet but now has started chatting much more and honestly, he is a delight to be around. I love listening to what he has to say. And he has a lot to say.

Bowie was also a delightful, perfect little baby. He loved to be snuggled and was affectionate. He smiled and laughed. Did he look directly at us ... in the eyeballs? Not always. I remember him staring at the windows in our bedroom when he was nursing or when I'd rock him to sleep and I used to think he could see ghosts. I wasn't sure he could hear me sometimes. We sought out help for Bowie early on because he had a significant speech delay as a toddler. We weren't super worried though. He was doing well in so many other areas that it wasn't a huge concern at first. But by age two, he still hadn't said typical first words like 'mama' or 'dada' ... and I wasn't sure he ever would. Our pediatrician set up in-home speech therapy visits. And that really helped. He went from using baby sign language to developing a slowly growing vocabulary. Our sweet therapist was like a friend to me and at one point, I did muster up the courage ask her if she thought Bowie might have autism. She didn't really say yes or no, and maybe she couldn't. But she opened my eyes to things that we needed to see. Like Bowie's reclusiveness, which we thought was independence.

Once Bowie learned to say a few words, he was fantastic at being social and loved to say 'hi' and 'bye' to people. He would make eye contact ... for a brief second. He was very coordinated. But he flapped his hands. He loved to be held. But he spun in circles. He could sing the alphabet and count to 20. But he couldn't always hear us call his name. It was all very confusing even though I analyzed everything on a daily basis. A lot of the things he did or struggles he had looked like they could be caused by something else. And a lot of his strengths threw us off. Maybe spinning in circles and constantly jumping off the furniture was just him being a boy. Maybe his older sister talked a lot so he stayed quiet. Maybe he had speech apraxia. Maybe he had a cognitive delay that would work itself out by kindergarten. Maybe he was just super independent. Even some of our favorite therapists and our beloved pediatrician were uncertain. Maybe I was crazy for thinking it could be autism ... but I couldn't shake that feeling in my heart and in my head that it might be. All the pieces add up and make so much sense now in hindsight. Of course they do. But we didn't know. And that's okay.

And so we waited a bit. And things became more apparent during his first year of preschool. His wonderful teachers brought out the best in him and he's really done well in the classroom. We set up his IEP. We had conferences. We met with his amazing team of therapists and teachers at school. A whole team of professionals who are committed to our family and truly care about my child. And I could eventually see that they were kindly, softly, carefully nudging us toward getting an evaluation and a diagnosis.

There was a phrase I had heard them say when one of us would mention testing ... 'It wouldn't be a waste of time...'. And after I had heard three different teachers/therapists say that phrase, I finally understood. They were telling us to go. So we decided to get the ball rolling. We, like so many other families were referred by our pediatrician to a local child development center at our local children's hospital. And we were put on a very long waiting list for an autism evaluation last November. And had our appointment yesterday, April 4. And let me tell you, the waiting is the hardest part. It sucked. But it gave us a chance to accept the possibility of having a child with autism. It gave me time to get ready for it. To read about it. But no matter how prepared you think you are, the A-word can hit you like a ton of bricks.

But it can also open doors. We are embracing it. And now we can see (and feel) how fantastic it can be. I felt a literal wave of relief come over me yesterday after we left the doctor's office. I took a deep breath – inhaled, exhaled. And then took Bowie out for ice cream. Now that we have a diagnosis, we are eligible for the additional speech therapy that Bowie needs most. There are so many resources available and we are lucky to live in a city where we can access them easily. We have an outstanding doctor who will help us along the way. We have a plan now. We have answers to the questions we've had in our heads all of this time. We are excited and optimistic about Bowie's future. We have so much hope. He's healthy. He's okay. We're okay. We woke up this morning, the kids ate breakfast, and I took them to school. Just like always. Every little thing is gonna be alright.