Raising a child with autism is a life lesson in patience.  We practice patience when our children are throwing tantrums in public places and people stare, we are patient when our children take 20 minutes to put on their own coats, and we patiently wait for our kids to reach developmental milestones that they should have met months or years ago.  I remember feeling my heart sink when I saw the first set of evaluation results placing Curtis anywhere from the 6-9 month range up to 18 months in a variety of developmental areas.  This was so painful because Curtis was almost 3 years old at the time.

Curtis could not speak, he could not pretend play (if you handed him a cordless phone, he'd put it upside down on a table and spin it like a top instead of pretending to talk into it,) he could not use a spoon or an open cup, he could not go up and down a ladder (limiting his playground trips to running in circles at full speed,) and he had no desire to communicate with anyone, especially his peers.  His sensory system was completely disregulated, causing him to clear off bookshelves and tables because a clean surface was not visually overstimulating, and he would run at full speed constantly to calm himself.  He was terrified of swings and couldn't use a tricycle.  And this is just a list of the skills Curtis lacked at 3 years old off the top of my head.  I'm sure if I looked in an old data book from his early intervention program, this list would quadruple.

So why am I rambling on about the skills he lacked?  Because there is one skill in particular that society will pressure you into teaching a child who is over 3 years old, regardless of his actual ability to learn that skill:  POTTY TRAINING.  I spent countless months trying every way imaginable to potty train Curtis because I was embarrassed that my 3 (and eventually 4) year old child was in diapers.  I tried pull ups that got cold when he peed, a "potty watch" to remind him to go every half hour, and even put him in regular underwear hoping that if he we himself he'd be uncomfortable and this would motivate him.  Instead, he would wet himself and leave a puddle at his feet while he kept playing at his train table like nothing was wrong.  Looking back I realize how silly I was.  He had so very much to learn that was way more important than peeing and pooping in a toilet and every hour I spent fighting a losing battle with the potty could have been spent working on advancing a skill he was capable of learning.  After almost a year of trying, I put him back in diapers.  And then, one day, just a couple months before his 5th birthday, Curtis started to use the toilet.  We instantly went from diapers to big-boy underwear and had very few accidents.  We just had to wait for him to be ready.  Curtis was in fact developmentally delayed and his brain was not understanding his body's signals that it had to use a toilet, so he couldn't be potty trained until he could understand those sensations.

I wish there had been a parent who had "been there" to tell me to relax and not waste my time fighting the potty battle just because people disapproved of my 4 year old wearing diapers.  That time could have been so much better spent not fighting this no win battle with autism.  So now, here I am, three years later telling all of you parents of little kids on the spectrum not to worry.  Your kids will be ready to use the potty when they are ready.  It is worth a try every now and then to test the waters, but don't force it and don't waste precious time with your little ones forcing something that just isn't going to happen yet.  Toilet trai  will come (most likely before kindergarten) so don't stress out.

Laura, Mom

When Curtis turned one, everybody told me I'd want another baby soon.  When Curtis turned two, the same people seemed perplexed that I didn't miss holding a newborn.  By the time he turned three, they realized that we might just be a one kid family, and by four, people stopped bringing it up.  It was around the time he turned six that I started struggling with the idea that I would likely only have one child, not because I only wanted one, but because I can't imagine throwing a baby into our mix, especially considering the huge likelihood that child would also have autism.  Until about a year ago, I was content being a one child family, but then I started to doubt that choice.  Perhaps as Curtis grows older and easier to care for, I am forgetting the days of constant work and worry as we tried to keep him from running into traffic or teach him how to speak.  It seems like forever ago we couldn't put a drink on a table because he'd dump it on the floor and we couldn't bring him in a grocery store because he'd run at full speed until he found a shelf he felt like clearing off.  We're moving past the physical difficulties into the emotional ones as he tries to adapt to a socially and emotionally demanding experience at school, so I'm not as exhausted from chasing him all day long.

Part of my baby itch comes from watching our friends have their second and third children.  We were the first in our social circle to have a child, so having just one was the standard of the group.  Since then, everyone has had their first typically developing child who learns to talk and listen and use the potty effortlessly and so they go on to have a second child who develops the same way.  It is very hard on me emotionally to know so much more goes into us considering a second child.  Can I give Curtis what he needs if I have to tend to another child?  If that child is typically developing, will he/she resent the attention they sacrifice because of Curtis' needs?  And what if we have another child on the spectrum who isn't high functioning like Curtis?  Could I live with myself knowing that we took such a huge risk and had a child who was low functioning and never learned to speak or use a fork or use the bathroom?  If we didn't know the risk, it would be one thing, but because we know we are 25% likely to have another boy on the spectrum, we might be fools if we roll the dice on this one.

The other thing I lose sleep over is who will take care of Curtis when we are gone?  I spend countless hours securing a safe and meaningful life for Curtis.  I am constantly checking up at school, making sure he has the right insurance, having meetings and filling out paperwork to keep his in home support going, and teaching him the skills he needs to get by in a very complex and confusing world.  I'm terrified that he will get devoured by the system when we're gone.  So if we could have the guarantee that our future kids would be neurotypical, would it be wrong to have more partly for the purpose of looking out for Curtis?  It is kind of a demented notion in some ways, but so practical in others.

Greg is pretty dead set on keeping our kid count to one, so sometimes I feel like I'm struggling alone, not because he doesn't care or listen, but because he doesn't experience the same emotions as I do regarding this issue.  All I can really do is keep counting our blessings and thinking of all the awesome things we see in Curtis that our friends might not get to see in their kids.  I feel lucky to have celebrated every minute detail of Curtis' development because it all took so much work, but I will always wonder what it is like to not break into tears because your child points to a bird at 3 years old, and to not worry about who will look out for him 50 years from now when I'm gone.  I will always think, "what if we had another and everything turned out ok" and "what if  we had another and it all went horribly wrong?"  These are questions I will likely never know the answers to, so we'll keep truckin' and making the best of our life as a family of three.  And I will continue to smother Curtis with love until he inevitably pushes me away sometime around sixth grade.

Laura, Mom

I prefer to blog about funny things Curtis says and does and how his autism has enlightened us and enriched our lives.  However, there are certain things Curtis needs that typical children don't need and many of those things are obtained via state agencies and public schools, both of which are the antithesis of user-friendly.  Today, I will share why one of those agencies, DHHS, is likely to drive me completely insane.

Autism is a disability that qualifies Curtis for Medicaid insurance through a program called Katie Beckett.  This program is essential to Curtis because the insurance he gets from Katie Beckett covers services that our private insurance may not cover or may require extensive authorizations or place limitations on how frequently Curtis can receive those services.  The insurance is not free to us, as a matter of fact, we pay more for him to be insured this way than through our work insurances, but the coverage is so much better its worth it.  There is one massive problem with this program....we deal with six different offices to receive this coverage and none of them communicate with each other.  We have to deal with the local DHHS office in Portland, the Medical Review Board in Augusta, Maine Care member services, a contracted nursing agency, the Katie Beckett representative at DHHS, and a payment center that processes our monthly premiums.  Every year, I have to fill out the same paperwork as someone who is applying for Medicaid based on low income, even though we are not accessing the insurance for that reason and we clearly make too much money to qualify anyway.  Then, I have to photocopy Curtis' IEP, his service plan for in home support, and his progress notes from any therapists and doctors who see him (totaling about 70 pages) and mail it to DHHS so they can have a nurse meet with us to determine that Curtis still has autism.  In addition to this, I have to copy and mail the same exact 70 pages of paperwork to Augusta every 3 years so the Medical Review Board can determine that Curtis still has autism.  Last time I checked, you're pretty much signed on to autism for life, especially once you enter grade school, but I guess I'm not qualified to determine that. 

So, after this never ending, irritating process, someone deems Curtis disabled enough to get the insurance and I get to mail payments to a payment center in a completely different town every month.  Guess what they do with these checks?  They cash them and never tell the Portland DHHS office they got them so every couple of months I get a notice from DHHS saying his insurance will be canceled.  Its not annoying at all...except it is.

Laura, Mom

*After re-reading this post, I must make two disclaimers.  First is that I am completely grateful for every bit of help Curtis receives, I am simply discouraged by a system that is so engulfed in red tape it is difficult to access.  Secondly, I am in no way blaming the hard working employees at DHHS.  I am sure they work very, very hard and probably don't get paid nearly enough for what they do.  My problem is with the system they are forced to work in.  I believe they would benefit as much as we would if there was some kind of central database and less paper coming across their desk every day.*

Curtis has discovered a new favorite song, "Born This Way" by Lady Gaga.  I have never been a fan, but one of the great things about Curtis' frequent interactions with other adults is that he is exposed to a variety of things that Greg and I may not expose him to.  So when Jamie let him hear this very appropriate song in her car, he started singing it everywhere, and he hasn't stopped yet.

The more I listen, the more I realize that this song has a lot to do with Curtis.  I often have people ask me what I think about vaccines and autism, and I always tell them Curtis was "born this way."  He was a very fussy baby, requiring constant motion and constant feeding.  He never went more than 2 hours without a feeding, and this included overnight.  Greg and I spent countless hours walking up and down the hallway with him in our arms to keep him from crying and I would watch TV on an exercise ball to keep him bouncing.  It was exhausting to say the least.  We didn't even feel comfortable leaving him with family for a couple hours when he was a newborn because he was so high maintenance and he would cry the whole time.  In hindsight, all of those hours of crying were related to a dis-regulated sensory system, something that is part of his autism and adhd.  So now when people ask if he got autism from vaccines, I can say with confidence that was not the case.

Aside from literally being "born this way" Curtis also embodies the chorus of the song:

"I'm beautiful in my way
'Cause God makes no mistakes
I'm on the right track baby
I was born this way."

He's literally beautiful on the outside, but what comes from inside of him is pure and brilliant and something I wish we all possessed.  And, although Greg and I are not church goers, we have always believed that God gave us Curtis for a reason.  He was created as this person and given to us as parents with a specific purpose in mind.  Now that we're through the really hard parts of autism (and trust me, I never thought we'd get through it), I don't think I'd want a "cure" even if there was one.  Autism is part of who Curtis is.  It makes him...well...Curtis, which means he is on the right track.  We are not trying to make Curtis "normal" because he IS normal.  He just needs to know how to be himself in a world that doesn't always know how to react to him.  He is so lucky to be surrounded by people who don't want to change him, but rather want to prepare him for what lies ahead.  That approach makes for a happy, successful kid!

Laura, Mom

When Curtis was first diagnosed, I felt like I was thrown into a tornado.  Everywhere we turned there was some magical cure or a stranger offering unsolicited advice about how to help our son.  Add to that the mental strain of accepting a life that is completely different from what we had planned and the challenge of trying to keep Curtis alive (see the many posts about how he spent countless hours trying to get hit by a car) and I became very irritable when everyone I encountered told me about the gluten free diet.  Here's the thing:  every family will take their own path in treating (not curing...there is NO CURE, despite what Jenny McCarthy says) autism.  Some find great success with gluten free diets, vitamin b12 injections, chelation therapy, and a variety of other methods that are not research-based.  Guess what?  I don't love my kid any less than those who try alternative therapies.  I didn't keep gluten in his diet because it was too hard or too expensive and I didn't skip the therapeutic listening that one occupational therapist suggested to us because I didn't want him to improve.  We, as a family, were seeing outstanding results from the therapies he was receiving and opted to stick with the research-based interventions.

(There was one time we took him to a "speech therapist" who was doing this alternative therapy that helped calm children and increase attention.  The therapy required Curtis to sit in a chair and click a computer mouse to a rhythm.  He repeatedly tried to bolt out of the room and then threw the mouse at the computer.  We were politely asked not to come back.  What we realized later is that the therapy itself required Curtis to possess the very skill we were bringing him there to learn, so it really made no sense at all.  But we had a good laugh thinking about that poor woman trying to keep our kid still for an hour:)

I am completely in favor of every family doing what works for them, but I have to say after a couple of months of listening to every idiot on the street tell me Jenny McCarthy cured her son with a gluten free diet, I was ready to punch the next person who said it to me.  Anyone who has lived with autism, whether they choose a gluten free diet or not, knows that you can treat the symptoms, but you can not cure autism.  Greg and I have met many families who swear by alternative therapies just as much as we swear by early intervention, and that is awesome.  We had a child who wouldn't eat anything other than goldfish, chicken nuggets, and applesauce until he was about 4 years old, and cutting him off of goldfish and chicken nuggets would mean a slow and painful death.  By the time he expanded his food repertoire, he had shown such outstanding progress without dietary interventions, we chose to stay on that path.

So the moral of this little post is:  We all love our kids and we all choose different interventions for different reasons.  Don't pass judgement, because the road we travel is one we draw for ourselves.  There is no map for families living with autism and we are just trying to do what's best for our kids.  So when you see the gluten-free kiddo at a party, don't think its no big deal to give him a piece of cake, because it IS a big deal, and when you hear we let Curtis eat all the crackers he can handle, don't tell us we shouldn't, because you might be the unlucky one who drives me over the edge.  (Just kidding....or am I?)

Laura, Mom

When Curtis was in preschool and receiving early intervention services, he hardly noticed his classmates. He had his favorite teachers who were more likely to elicit responses from him than others but when he was four and five he was feeling his way though the fact that he was expected to interact with non family members. However, he has had a close relationship with his cousin Jayden (pictured) since birth despite the very difficult time they have understanding each others actions.

Jayden is 8 months older than Curtis and has the street smarts of a kid much older. He has often been frustrated with Curt when he doesn't play like other kids and does "odd" things for entertainment. I spend a lot of time observing the relationship between the two in addition to acting as referee. Without knowing it, Jayden has given Curtis a consistent and often sobering education on how other kids play together. These two have sometimes exhausted me as a pair but Jayden's sense of adventure won Curtis over early on and Jayden is thoroughly entertained by Curt's sometimes bizarre antics. Lately, they are sharing favorite video game websites and showing each other new music on youtube. Each of those activities of course requiring extensive parental supervision or things get off track quickly.

Having just finished first grade Curtis has made tremendous strides in socialization. A lot of the credit goes to his one to one support person. She has taken the time in the past two years to foster communication with peers and stepping back when her interference is unwarranted. Believe me when I tell you it is important to find the right support person for your son.  Someone who is interested in knowing your child and doing the work to help him succeed. Curtis got to spend the last two years with the same class and developed real friendships with all types of kids. He has no concept of cliques and makes no judgments about anyone. He is attracted to the kids with big hearts and they are inevitably attracted to him.

Today when we are out an about and a kid approaches Curtis on the playground to play she often has no idea Curtis is autistic. He will suggest a game of tag or hopscotch and try to follow the rules if a kid brings up a game with which he is not familiar. He is still likely to look off to the side when he speaks and ignore hellos on occasion but we are a lot further along than we expected a year or two ago and he is making more social strides all the time. He is much more socially confident now and secure that he has some good friends who care about him

Greg, Dad

I went to the beach and played with some kids, it may not seem like a big deal...but it is!

Curtis and I spent at least 3 days a week at the beach last year (2010), and during that time he only wanted to play with one person:  Me.  I would constantly encourage him to play with other kids in the water, or play catch with a beach ball, or share his sandcastle toys when others approached, but he was so anxious and socially incapable, he would rather go home than be forced to play with a peer.  When a kid would accidentally knock over his sand castle or splash him with water, he took it very personally and needed a lot of encouragement and redirection to recover.  Although I love that he loves to play with me, it always concerned me that he had no interest at all in playing with other children in such a kid-packed setting.

We have referenced many times on this site how much Curtis grew socially in first grade.  Today, we went to the beach for the first time this summer, and he saw 2 of his schoolmates there.  He instantly ran up to them and said "hi" and when he began his sandcastle city, I prompted him once to invite the boys to join him and he went right for it!  Quite appropriately, he asked them if they'd like to join him.  One said no, the other said yes, and they began building castles and collecting shells to decorate them with.  They went for a swim and played ball together, and not once did I have to intervene in a social exchange.  For one hour of his life, Curtis independently performed social interactions that he was completely incapable of this time last year.  I got to sit back and watch him genuinely enjoying his time with his peers.  After they left he was so proud he could burst and he said, "I like playing with you Mom, but I sure like playing with my friends, too!"  And with that, he took my hand and led me to the water to go for a swim together.

Laura, Mom

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

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

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