There are so many times in our life with Curtis that remind us how different we are.  As he grows, we have to alter our existence less and less to accommodate his different way of thinking, as he has learned how to live in our world.  Of course, there was a recent incident where he locked himself in a friends' bathroom during a playdate because "his stupid sister was crying like a baby and i didn't want to hear it!"  But I am not writing about those moments right now.  I am writing about one time when Curtis was just like every other kid in an arena packed with 53,000 people.

When I opened the Taylor Swift tickets on Christmas day 2010, I was so excited I could burst.  Greg got me and Curtis the perfect gift.  Then I started to wonder how Curtis would react to a screaming crowd, if he would understand that we have to sit in our seats and can't walk right onto the stage, and would he be able to stray from his 8:30 bedtime to stay up late for a concert.  But the months passed and Curtis began to change...a lot.  He seemed to be understanding "our" world in ways I didn't expect he could.  And so Sunday, June 26th, 2011 arrived and we spent all day waiting to leave for the concert at 4:30pm.  And when 4:30pm arrived, Curtis hid in my bed under the covers and said, "I don't want to go to the Taylor Swift concert."  Classic Curtis.  So we let him chill out for a bit and put on our "no big deal" attitude and got out the door.

That night I got to dance and sing with my little boy like there was no tomorrow.  He had the absolute time of his life...and so did I.  He was just the same as every starstruck kid around us, except he kept asking what song she was going to play next (as if I knew) and what time it was almost every time a song started and ended. He also thought I should know the exact time at which the show would end, so I made a time up and came pretty close. I thought the fun would come to a screeching halt when fireworks went off mid-show, but to my pleasant surprise, Curtis' fear turned to a smile when I covered his ears and showed him how beautiful the lights were.  The next day he insisted upon wearing his Taylor Swift T shirt and told everyone we saw that he was up until 11pm and Taylor wore a red dress, a gold dress, a green-blue dress, a purple dress, and a black dress.

I think back to the poem I wrote three years ago about how hard Curtis has to work to do the things other kids do, and this concert was no different.  He spent years learning the skills to survive in that setting and it all paid off when I got to see him kick back and have fun just like every other kid there.

Laura, Mom


I was waiting for them in an adjacent parking lot in case all was not so smooth. I was reading "Born On A Blue Day" and getting devoured by bugs when I left my car but managed to avoid the $40 Gillette Stadium parking lot fee by hanging out in the parent drop-off. I knew Curtis would be fine because his mom would navigate the scene to make him feel as safe as possible. Then Taylor Swift would take care of the rest. I was glad they had so much fun and happy to drive them home. Curtis fell asleep about 7 minutes into the ride shortly after telling me I should not be going south on route one because we live north of Massachusetts. He was skeptical it was necessary to travel south briefly before heading north but didn't have the energy to wait it out.

Greg, Dad

 hi my name is curtis. my favorite things are playing video games
going on adventures and i love swimming. i love my summer vacations. yesterday i got 2 holes in one at miniture golf and i got a free game so we dont have to pay next time.i have a box of rolled coins worth $578.50 because I find them everywhere and ask my family for coins and don't spend my money. its getting late and its bedtime bye!

Curtis

Curtis finished first grade today and his parents are naturally very proud. It was a great school year. He read all the "Diary of a Wimpy Kid" books in a matter of two or three weeks and began wearing a "I'm pretty much one of the coolest people I know" wimpy kid t-shirt to school. A real hit with the 4th and 5th graders. His handwriting, spelling, and other areas of academic life improved as we had hoped but it was his social growth that we appreciated the most. Curtis flourished socially this year, feeling more comfortable as his class was unchanged from the year before. This year, a small group of his friends would wait for him as I walked him to school and great him with hugs. Eventually those hugs turned to morning handshakes as Curtis hugs can be quite strong when he's excited to see someone and the "engine" starts running high.

In second grade, Curtis will have a new classroom though hopefully with more than a few familiar faces. His teacher will be different and it takes time for him to build a trust with a new authority figure. His three closest friends are joining a newly opened school a few blocks away and Curtis will surely miss them as they will him. Re-igniting or developing a new social circle is already on my mind but for now it's the start of summer. Time to have some fun new adventures with the coolest kid I know.

Greg, Dad

We realized around the age of 12 months that Curtis was not like other children. He would not respond to his name or make any eye contact. He would spin the wheels on cars instead of rolling them. When we gave him a bag of letters to spell words he made patterns of the letters or laid them out in order. Curtis would not point, wave, and showed no inclination towards speaking.  When Curtis was diagnosed with Autism around the age of 2 years, his mother and I were not exactly sure where to turn for help. Coming to terms with the fact your son (or daughter) has autism is not easy. The developmental disorder is fraught with uncertainty from how your child will develop to how he got the disorder in the first place. Instincts tell us to blame, worry, and fix the problem. It's frustrating to discover the lack of real answers pertaining to autism.

What I really wanted was a projection. You say he is ranked here on the autism spectrum so does that mean he can have a career or make friends or is none of that going to happen? What I've found is that the progress and changes are unpredictable and changes happen fast. I've gone from wondering if he will have the ability to sort silverware as an adult to expecting him to become an engineer (he says artist). My advice to parents of autistic toddlers is expedite your grief over the diagnosis and get to work. Early intervention therapies have been instrumental in our son's progress and have allowed us to unlock his potential but they are not without red tape. If you feel there is a stigma attached to the autism label you're going to have to get over it for the sake of your child. There is simply no benefit to waiting. if you suspect your child has autism there are simple screenings which can confirm or deny the symptoms. If you have already been told by a specialty physician that your child has autism, it's time to get to work.

Greg, Dad

ADHD diagnosis
     Up until Curtis was about 5 years old, he had absolutely zero safety awareness.  He would run full speed into the street and had no regard for how far away from his adult companion he would go.  Despite countless hours of work by his in home support specialist, we were finding it impossible to get him to respond to the simple directions "stop, no, and wait."  I lived in constant fear that Curtis would jump into a body of water, run into a busy street, or fall off of a cliff before he entered kindergarten.  In addition to this fear for his safety, I was also concerned for his development aside from the common delays associated with Autism.  He seemed incapable of sitting for more than 3 minutes, which really compromised his fine motor development, as he could not sit long enough to learn how to hold a pencil, use scissors, and do puzzles.  And he would run around the house for hours on some days and even his most preferred activities couldn't grab his attention.  Again, his in home support spent countless hours using strategies to try to calm his body, but nothing worked for long.
     One day we were walking out of the Children's Museum and his hat flew off his head.  I turned around to pick it up and when I turned back around, Curtis was running full speed toward a busy Portland street and had no plans of stopping.  I ran, screaming, "Curtis, STOP!" but he just laughed and ran faster, thinking we were engaged in a game of chase.  Thankfully, I caught him about a foot from the street, but that was the day I knew he had to be tested for ADHD because his brain was not able to tell his body to stop.
     Once the results came back showing Curtis had ADHD combined type (hyperactivity and attention deficit), we had to face the tough decision whether or not to medicate.  Due to the extreme safety concerns, we decided to go for it.  We had to try 3 different medications before we found the right one for Curtis.  My advice to parents is not to take the first med you try if it has too many side effects.  Every kid is different.  The medication helped Curtis learn safety skills and his fine motor skills skyrocketed because his brain could finally slow down enough to work through those skills.
     Now we use meds to get him through the school day, but generally, he can maintain himself without them on weekends and vacations.  When we go to visit family or a birthday party where there is a lot of stimulation, we can rely on the meds to help Curtis control his body.  He is more successful in certain settings with it and with that success comes pride.  And he hasn't been "smashed up like a pancake" by a car (as he would put it.)

Laura, Mom

He's right of course, it isn't, but most of us see the value in rounding increments of time. Not so much for Curtis. The time on the clock is the time so call it what it is. It's here and other places that we choose our battles. He will not eat a slice of pizza that has dangling cheese. He will not eat watermelon with seeds. Curtis won't eat his pb&j with even a slight bit of crust left on the bread. You won't budge, he won't eat. It's here and other places I will accept that I'm spoiling him if it means he will eat. The truth is, I have no idea what that dangling piece of cheese looks like in his head but I know it isn't good. Getting frustrated that he didn't see what I saw was a losing battle.

During Curt's kindergarten year he needed a virtual battle suit to go to school. He needed his watch, his Michael Jackson necklace, water bottle designating how much to drink, and his Curious George stuffed animal which rarely left his sight. It was my job to make sure he had all of these items and I would get a call if I missed one to retrieve it and get it to the school. I believe I was as good at this job as could be expected but these items were in motion, traveling between cars and we didn't have backups for all of them. Thankfully it was a short commute from the office to the school to get Curtis an item I missed so he could get on with his day. The only disappointment I felt was in missing one, like a goalie who let one get by. Comfortable is a relative term and for Curtis, comfortable means high maintenance for mom and dad. But we know a comfortable Curtis is a productive Curtis and so be it.

Greg, Dad

At 5 feet and around a hundred pounds Curt's mom is small in stature but big in heart and determination. When his primary care doctor rebuffed our concerns by telling us Curtis was a late bloomer, it was his mom who insisted we get to a specialist. She knew something wasn't quite right with our son and that waiting it out wasn't the answer.

Since the time we got the Autism diagnosis she has undertaken a series of fights to make sure our son receives the help and services he is legally entitled too. His mom immediately enrolled him in an early intervention school so he could get the occupational and speech therapies that have allowed him to make incredible progress. Most of all she's a mom who loves her son unconditionally and for that, he is an eternally lucky boy. Here is a poem Curtis' mom wrote when he was about 4 years old.

Greg, Curt's dad

Curtie's Poem

I went to the park yesterday
And played with some kids
It may not seem like a big deal
But it is.

Just one year ago
All the same kids were there
But that was something
Of which I wasn't aware

I didn't know how
To wave or say "hi"
And when I did see them
I'd just keep running by.

My mommy didn't know
How different it could be
But yesterday that changed
She was so proud of me!

She saw me run up
To a boy and say "hi"
And say "she's sad"
When I saw a girl cry.

I said "I want goldfish"
When I wanted to eat
And then I ran off
On my two tiny feet.

Last summer it seemed
No matter how hard I tried
I just couldn't figure out
How to get down the slide.

So I'd wander in circles
And gaze at the sky
While the joys of a playground
Kept passing me by.

Yesterday I climbed
Up each rung of the ladder
Then ran across a bridge
With a sweet pitter-patter.

And next I climbed steps
One, two, and three
Then I sat on that slide
And came down with a "weeee".

I saw a new friend
Running on the paths
So I said "hi" and joined him
And we shared a few laughs.

For other kids these things
May come easily
But its been quite a bit
Harder for me.

So these things may not matter
For those who don't know
What my life was like
Just one year ago.

I went to the park yesterday
And played with some kids
It may not seem like a big deal
But it is.

Laura, Mom

Curtis is finishing up his first grade year and naturally his parents are quite proud. He has never been in day care and is rarely supervised by anyone other than his mom and dad. We are protective parents to be sure but as those most familiar with the challenges a typical day can present for Curtis, we feel our apprehension is justified. For the past two years he has been a part of a typical classroom setting with a 1:1 ed tech who facilitates his learning and perhaps even more importantly, his social interaction with his classmates.

Emotions are very difficult for Curtis to understand. He may see a child cry and his instinct is to laugh. Here he is pictured next to an emotional thermometer starting at calm and escalating to scared. When Curtis started school he was anxious, timid, defensive, insecure and lacking communication and social skills. We were lucky enough to get a fantastic support person who began building a level of trust and support to make him feel comfortable while at school. Once the trust was built, he was more amenable to the social groups, sensory input work and problem solving steps his ed tech was putting into place. Each day Curtis comes home with a summary of his day assembled by his support person. She lets us know his moods, progress, distractions, anxieties, and the outcome of her front loaded day play. School is not easy for Curtis but he loves it. He loves it because he receives the support he needs to be successful. And he inspires his parents and others who know him by taking the challenges school represents (the loud cafeteria, screaming kids, games and jokes he doesn't understand) head on and coming out on the other side with a smile.

Greg, Dad

Plenty of 7 year old kids enjoy basketball but don't play quite the same way as Curtis. He lines himself in front of the hoop and shoots granny style with the goal of making as many shots as possible. He tallies the score in his head and and multiplies the number of makes by 2 or 5. A made hoop is followed by a sentence like "Score!, 18 in a row, score 36." A few minutes later, "Score!, 27 in a row, score 54". His goal is to make as many as possible in the time he has at that hoop and that goal is uncompromising. I usually don't even notice anymore until another kid shows up and says "Woah, that kid's smart, is he right?" He is right about the number of shots made and he'll also keep your tally if you ask him but the shots were not in a row. He claims all of his makes are consecutive.

Curtis gets very easily "obsessed" with an activity. He has had temporary obsessions with using sidewalk chalk, playing with his Thomas table and collecting coins. Collecting to be interpreted as trying to obtain any coin he can see and frisk acquaintances for their spare change. Basketball was also an obsession so it was restricted to dad and Curtis time, for which I'm grateful. It's a wind down time in the evening for both of us and a time when I'm most likely to get his ear.

Greg, Dad