Curtis is still finding comfort in asking a lot of questions. He's been doing it pretty much since Halloween. The flow of questions is constant, whether he's relaxed, stressed, eating, or working. It's mostly funny but occasionally infuriating. Seems like at some point this behavior will be gone and replaced by another. For now, here is a short representation of the questions he has been throwing at me, Laura, Jamie, and Caron lately.





"Is it okay if I left some hair out there?"
"Is it ok if I did anything with my fingers?"
"Is it ok if I touch the table and then my glass?"
"I didn't sniff my water did I?"
"What would happen if there were no guns and MLK Jr. was still alive?"
"Is it okay if I got some lemonade on your bag?"
"What would happen if the Earth was split into two circles?"
"is it ok if i did anything?"
"Is it okay if I dropped a fingernail in the fire?"
"What would happen if i got an eye booger in the heater?"
"Is it okay if I got a little pizza grease inside my ear?"
"Is it okay if anything ever gets on my jacket?"
"What would happen if the world was heart shaped?"
"Is it okay if something comes out of the Earth?"
"Is it okay to let go?"
"Is it okay if salt got on the wood?"
"Is it okay if I touched your knee?"


Greg, Dad

_"This is my back scratcher! Ms Barber got it for me because she has been scratching my back for three years and wanted a break!"

That pretty much sums it up. I have been planning on getting him a back scratcher for awhile now. Every time he is sitting at circle or sitting at his desk he requests that I scratch his back - a sensory feeling he seeks when he needs to be soothed during stressful time. And who doesn't love their back scratched? I could get away with being his personal back scratcher in kindergarten and even in first grade - but now that he is in 2nd grade I thought it was (finally) time to implement an independent and a self-soothing skill that he can take control over during the day.

He has taken to this in a way I knew he would. I painted it red for him, and he was quick to put 7 smiley face stickers on it first thing this morning, representing the 7 people in his life who help him out - his idea. The back scratcher has accompanied him to morning meeting, it has provided a break during a math test, it has walked with him down the hall (scratching the whole way), it sat next to him during lunch and it has provided quite a bit of conversation among his class and friends. The way he describes the feeling of it ('OMG - this feels SO good!") and the way he describes the reason he has it are priceless to hear.

Caron, 1:1 School Support

There has been a lot of press coverage on the redefinition of autism since the story broke last Thursday. Experts are attempting to reduce the number of children diagnosed, not through therapies, but by changing the criteria of what qualifies as autism. The bottom line would mean no services for high functioning classic autism, Asperger's and those diagnosed PDD-NOS. The reality is that preventing these kids from getting early intervention services is short cited and will only end up costing a lot more in the long run.

The Autism Society, using the Government Accounting Office Report on Autism 2007, estimates that "Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention". Personally, I have no doubt that the services Curtis has received since his diagnosis are preparing him to survive, work, and live in the real world, and that lifelong costs associated with his care, which some estimates have at over $3 million, will be greatly reduced by the therapies and help in school that he has received in his formative years.

I've read several articles on the topic in that last few days and identify with this mom completely. Her son exhibits more classic autism visual signs than Curtis, but there are lots of similarities with our kids. They need help in school, but there is intellect and talent to unlock that could be turned into productive, wage earning ability. She says of her son:

"He scored 98% and 100% on his two most recent French tests, exactly the same tests the typically developing students in his 7th grade class took. Sam can tell you the day of the week your birthday falls on, going forward or backward about 50 years, and also remembers most of what he did on any particular date for the past several years."

The article points out a cost of about $30,000 a year for a full-time aide to get her son through his day. I believe it is this cost and any associated cost driving this redefinition as a quick fix on school. Sounds like a lot of money and it is. However, it pales in comparison to providing full-time care to adults with autism in group home settings, with estimates between $75,000-$200,000 a year. Save today, pay a lot more tomorrow because without early-intervention services, these people with autism are going to have no where to go when their parents pass on.  I have no doubt Curtis would need full-time care for the rest of his life if he hadn't been receiving the services he's been getting since he was three years old just as I have no doubt there is now hope for him to work and live independently after the. We would love nothing more than to ween him off these services, as soon as he's ready, but Curtis and kids like him require these services in order to figure out the rules the rest of us are playing by and figure out a pretty confusing world, then adapt.

With appropriate supports, autistic individuals like Sam are able to learn and to grow into productive, taxpaying members of our society. If a far narrower definition of autism is adopted — allowing insurance companies and financially-strapped school systems to deny beneficial services – society will pay far more in the long-run, more families will be financially devastated by this condition, and people with a significant disability will be relegated to a lower quality of life.

There is a rather annoying article from The New York Times today which talks about new definitions of autism that will reduce the number of children diagnosed. A sort of bell curve of autistic symptoms where high functioning autistics and those with Aspergers or PDD-NOS may not get the early intervention services they need because they aren't autistic enough. As Dr. Fred R. Volkmar says in the piece of the surge in autism diagnoses:

“We would nip it in the bud.”

Wow, that sounds like a guy who doesn't get it. We would nip it in the bud? Great choice of words doctor! This reads like he believes autism is like welfare abuse or some sort of insurance scam. I'm still not sure what people think parents of autistic children are getting from the diagnosis. If they are handing out money to parents of children on the spectrum, I'm still waiting for a check. Do they think we long for our kids to have their own personal babysitter at school in the form of an ed tech? Yeah! Isn't that every parents dream??? I think it's more likely there are budget cutting agendas in mind and not so much what's best for these kids who need some help. Color me shocked.

I was watching a little Spongebob with Curt the other day and just before the end of the episode, he asked me why Mr. Krabs had set up a hotel. As so often happens, Curtis had missed the entire point of the episode which unfolded in the the first few minutes. That Mr. Krabs set up a hotel and you had to rent a room in order to get a Krabby Patty so he could make more money. It took a long time to explain that, because in the world of autism, this plot makes no sense and doesn't even register. Curtis has seen entire movies like Shrek or Madagascar several times before finally asking us the most basic plot line questions. So many things are going over his head all the time.

Now translate this into the school setting. When the teacher is speaking to the class, Curtis likely gets lost quickly without some help. Any number of words or phrases confuse him and then you've lost him. And if he can't follow the trail, he isn't going to pick up the path. Without the support he has now, he would need to be home schooled. Curtis is only now beginning to ask enough questions and eliminating those times where he doesn't understand something as just lets it go.  He looks like a normal kid and even manages to sound like one sometimes, but right now he can't do it on his own. He's making progress towards that, mostly because he's had years of early intervention that have developed his speech and ability to interact with and befriend other children and he's had the support he needed to be successful in school. Support we fully intent to ween him off as soon as he can handle it.

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

I'm inclined to agree with Ms. Shery. The article also mentions autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. together to lump them into one category, though there are pretty clear differences between my son with classic autism and someone with Aspergers.

Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

Sure hope my kid isn't too "cognitively able" to get the services that have allowed him to make so much progress thus far. Or any other autistic child who would greatly benefit from early intervention and similar services.

I'm willing to admit could be a flip side to the argument. There are probably some kids who have developmental delays by means of flat out parental neglect or other factors and they aren't truly autistic. Who knows. I have no idea what percentage of the autistic population this comprises but I doubt it's a lot.

People on the spectrum are typically diagnosed as such because their brains are wired differently and I would hope the specialists who are diagnosing autism know the specific behaviors. I believe for the most part they do. We have a terrific specialist who has seen Curtis every since months since his diagnosis and is always charting his progress.

The continued rise in autism and Asperger's probably has more to do with recognizing signs that have existed for years but around a lack of awareness that now exists. These kids need intense support at a young age in order to unlock their potential and my hope is that they continue to get it once this redefinition goes though.

Greg, Dad

_Walking through the door in the morning is often the hardest part of the entire school day for Curtis. I see him walk up to the building with a look of fear on his face that he often masks with a smirk as he relives a funny story or rethinks a funny joke. This is how Curtis registers and/or prepares for the transition into another "world" -  he dips into a coping skill that many of us use all the time; covering up fear with confidence and humor. This balance - or his attempt to balance - between the two extreme emotions can be a lot to handle first thing in the morning. It usually takes us 10 - 20 minutes to ease out of his transitional survival mode and into a calm and happy school day.

However, within those 10 - 20 minutes I get the most "road blocks" thrown my way, the most questions asked, the most attitude on his sleeve, and the most anxiety centered behaviors demonstrated. The transition out of school and into his home life is pretty similar.  I prepare for this transition on my end the same way as I prepare for the morning, keeping everything predictable and timely.

Every now and then, based on his mood, we will exit out of a different door to alter any negative "exit" habits he may have formed and allow some spontaneity if it eases the transition. For the most part, he likes these two transitions to be predictable and down to the minute. I very rarely get a "goodbye" once I open the school and the two worlds (school and home) come smashing together. If I want a goodbye and/or an exit debrief - I have to do that in a very sneaky way without him even knowing we just said "goodbye". He has never been a fan of saying goodbye to his friends or any of his other teachers since he started coming to school three years ago. I think he musters through the school day with all sorts of social etiquette strength (that does not come natural for him) and survival energy (that takes a lot out of him) so once 3:05 hits - he is tapped and he needs to exit in his own way.

I dont take any of his transitional moods personally. He is a kid that does not like pressure and/or emotions and more often than not those attributes are present in any transition. When people are transitioning into a new event they often say hello, goodbye, how are you - questions are asked, energy is shifting and different expectations are present. Curtis has a lot he is trying to register in a short time and the best thing I can offer is my patience and thick skin. I do believe though that it is as important to pay close attention to these transitional moments and to acknowledge what a child needs during the transitions as much as during the activities or events that tend to follow a transition. The transitions only last a few minutes, but for Curtis, I am quite certain they are the longest few minutes in any day.

Caron, 1:1 School Support

Getting Curtis to school in the morning isn't my easiest part of the day. Typically, it involves ending an activity he likes, such as playing "Monkeyquest" online or watching a cartoon, then getting him to participate in putting on his clothes, gathering everything he needs for school, and getting out the door. He doesn't do much of this willingly and usually wants to argue about why he can't bring his batcave or some other toy or electronic to school. Curtis always pushes the clock and we get out the door three or four minutes after our planned exit time. He always asks if I'm mad if we're late, if it's okay if we're late, what will happen if we're late. I reassure him each time that everything is fine.

I think I've written on this before but I always keep the walk to school as light as possible. I won't bring up a topic that will get him thinking too much or make him nervous. I understand how hard the transition into school is for him, or at least my perception of how hard it is, and do what I can to get him to the door happy and ready to take on the day. There is something that happens as he approaches the door however. Generally, there are kids running by us screaming, yelling, laughing, and Curtis gets that "oh shit" look like he doesn't want to or can't deal with it. But he gets in there and takes on the day despite the uncertainty and complications that come with integrating with neurotypicals. I always walk away from the school worried about him, but more inspired than worried, because nothing I have to do during the day is as difficult as what he weathers every time he goes to school.

Greg, Dad

I've been asked a couple times about the type of feedback we get on this site so here are a few of the comments/reactions that have come in outside the comment areas attached to the posts.

Email: MagnificentMindsToronto@gmail.com

Comment:  Hi There, FANTASTIC blog and resource. Feel free to check us out online at www.MagnificentMinds.ca We are a brand new ABA center in Toronto with a holistic approach to education. We seem to be on the same page! We also have a blog. Thanks for posting.

Email: jennifermerritt636@

Comment: My son James diagnosis is PDD NOS, he is 24 and I really enjoy your blog. Thanks for taking the time to share Curtis life and pics. You are wonderful parents. Jennifer

Shannon K.

11:24am Jan 19

Hi Laura,

I just wanted to thank you and Greg for writing your blog. Dylan was diagnosed with High Functioning Aspergers and ADHD this past summer. Something I guess we've always known but it became official this year which I'm sure you know is a blessing and a curse all at the same time. I hate that he's "labeled' but unfortunately it seems that without it services and supports are nonexistent. It's still a battle especially with our school district but like every other parent ,I'm sure, its one I gladly fight. Again just wanted to say thanks its comforting to read your posts and see how you guys approach different situations it has been a huge help to me!!!

In regards to basketball

Carla Butorac • Greg, Try giving your son a visual "procedure" for whatever it is he will be doing that answers these 4 questions: What do I have to do? How much of it do I have to do? When will this end? What will happen after this ends? You won't have to say anything and he won't have to say anything back.

Stephanie James • Greg, Another way to look at what happened with your son at basketball practice is that he was sensory overloaded and trying his very best to cope. Just as at school when it is important for parents to create an IEP team that works well with them and their child, understanding the child's unique needs, it is also important in everyday life for parents to create a team to help get their child's needs met at a daily, functional level. Then you, the parent, are not left trying to figure everything out while you are in the midst of it all. Since my daughter is no longer in school, I have involved over the years an OT, a cognitive behavior therapist, friends with grown kids with disabilities, a psychiatrist, her boss at work, my ex, a local support group of parents with grown kids with disabilities, her own friends.... (We rely on a Medicaid Waiver program and our county's mill level funding to pay for the professionals.) Knowing that I can call on them all (individually or as a group) when I am dealing with a behavioral issue and can't quite figure out what is going on, relieves me from always being "super mom" and to access other's advice and common sense.

So, re your son, you may want to observe what is happening when he is stressed at basketball games and take little steps around that. Maybe he is overwhelmed by too many directions from the coach; the coach may need to limit his language to certain familiar phrases your son will know and what he is supposed to do when he hears one of those few phrases; maybe find what moves on the court your son is good at and have the coach ensure that your son will participate only when he is able to do the moves = for positive reinforcement. But most of all engage the coach in getting to really know your son in a positive manner, initially limiting his time on the court right now only when he can be successful - and then build from there. The coach can be part of your and your son's functional, everyday living team.

It would be way too much of a generalization to say that all individuals on the spectrum can't keep secrets. I came across a message board titled wrongplanet.net when researching the topic and there are people with ASD who can keep a secret just fine.
Of course, individuals on the spectrum tend to have a hard time with social norms and understanding the "rules" associated with keeping secrets is no different. Typically, they won't understand the social situations that surround keeping secrets. Whether its the autism or the combination of that and his young age, one thing is for sure, Curt can't keep a secret to save his life.
A few days ago, Curtis broke a small figurine of his mothers. It was an accident and he felt bad about it. Mom was exercising and I told him I was sure I could fix the two broken areas with super glue. The repair on the porcelain went fine, much smoother than Curt's ability to deal with his accident. He asked if I could keep it a secret and keep it between us. I told him he wouldn't get in trouble if he told his mom and that we had fixed it, but I was also curious if he could keep it a secret, since I'd never actually seen him keep one successfully before.
As the glued figure sat drying, Laura sat next to him with no knowledge of what he had done. As she asked a couple of unassociated questions, he broke down and hugged her, burying his head in her chest for a long time. SHe was obviously curious about his condition. He didn't spill his secret, but didn't exactly play it cool either. I told her what was going on and after a little time, Curt was relieved of the burden of his secret. It's typically excruciating for Curtis to try to carry any secret at all. This blog post from Autism Speaks does a good job of pointing out some of the difficulties I see in Curt when he attempts to keep a secret.

"Those with autism spectrum are concrete thinkers and exceptionally honest – if asked a question, they will respond with the truth, without taking the time to analyze and reflect what should be said and not said. Thus, secrets are hard for them to keep for any length of time."

This is certainly true for Curtis. Not that the broken figurine was a secret he had to keep. However, even though it was his idea to keep the secret, he simply couldn't handle it. As soon as his mom asked him something, he folded.

"those with ASD will usually tell it like it is – revealing to parents, siblings, their friends, acquaintances and perfect strangers things that shouldn’t be told. This can be either a positive or a negative; how others handle the completely honest statements made by the child with ASD will determine how much trouble will follow. If a very young child, most adults will laugh over the blunder; if an older adolescent or adult, grave consequences can result."

As many of Curt's qualities go, the lack of an ability to keep secrets is more endearing than anything else. He'll usually tell you what is in a wrapped present or reveal anything meant for a surprise.

"For the child with autism spectrum, this whole business of keeping secrets can be very confusing. Appropriate instruction on secret keeping is both difficult and delicate and should be tackled carefully by parents and teachers. Even after intensive instruction however, making this type of judgment requires split-second analysis of multiple factors, both concrete and humanistic. So don’t be surprised when the kid spills the beans."

Greg, Dad

In September, I posted some comments from an Autism Awareness thread on Linkedin. Parents of children on the spectrum share a piece of advice they would give to parents of newly diagnosed children. The thread is still popping up so I thought I would check back in with it and transfer a few more posts that caught my attention, beginning with:

"Brenda Considine • I was given the best advice EVER by my son's pediatrician: "Keep your child's self-esteem in tact, and he will be fine." It has guided nearly every decision we have made for him."

This advice reminded me of the shirt and hat we encouraged Curtis to get at the Boston Museum of Science this past weekend (pictured). Keeping Curt's self-esteem in tact is always a top priority for his caregivers and is vital to his success so far. We believe he can do anything and it gets him believing it too, even when he doubts it. Curtis went from being intimidated by his Razr Scooter on Christmas to taking on large hills over a two week period because we left no doubt in his mind that he could do it if he was willing to try. Now he's got a good riding foundation for when we pick bike riding lessons up again next spring.

More posts that caught my eye

Alan Fox You have to do as much as you can for your child as soon as you can. Waiting and hoping will not help. All the research says do not wait, intervene early, even without a diagnosis. Your child is unique and so is his or her autism. Anyone (author, doctor, guru, self-advocate, or me) who tells you he or she can help your child without knowing your child first cannot help your child. What works well for one will not necessarily work well for another.

Meredith Zolty Keep a notebook with all your meeting notes, doctor/therapist contact info, school details etc. Bring it with you to meetings and appointments to help coordinate your child's IEP.

Debra Severson Forgive those in the schools. They don't know that they dont know- but be patient and offer them resources to learn and ask (insist, really) districts to provide staff the training they need. Don't be afraid to disagree. Just have sound reasons and look for an alternative intervention that makes sense to you and takes in account your child's motivations. Push when you have to push.

Mary Kay Forster • Knowledge is power. You MUST be your child's advocate. Learn all you can about all kinds of therapies, help groups, treatments, etc. You have to determine what to discard as not appropriate and go forward and fight if necessary for the things your child needs. Grow a group of like-minded teachers, administrators, doctors, friends and family to help you on your way.

Brenda Difonzo The road ahead will be a long and challenging one. I would advise you not to compare your child to other "normal" children his/her age - they will achieve what they can when they're ready. Also remember to take care of yourself, your spouse and any other children you may have.


Greg, Dad