Each month Curtis's elementary school has a community, school wide meeting in which everyone - all teachers, staff, students and even some parents - come together in the gym and listen to music, sing songs, play drums and recognize which students have demonstrated certain character traits that has been highlighted each month (and received the positive reinforcing "ticket"). This is a new concept and monthly activity for school this year, so of course it has taken some time to get Curtis comfortable with the whole ordeal.

He hasn't jumped on board as much as other kids but he has been able to move from 100% refusing the first community meeting to attending yesterday's meetings in their entirety. I did have to alter both the conversation about the "character trait tickets" as well as the expectations I have for him in order to calmly get through these school wide assemblies and get him on board with demonstrating the traits daily. Curtis is expected to stay for the whole meeting, but I have sound blocking head phones to omit the loud noises that come from the cheering or the sing along. He is expected to show respect to those that are getting the monthly awards by giving them a thumps up (instead of clapping) and those that choose to participate in the singing, but he does not need to actually sing the songs himself.

He is expected to demonstrate the highlighted character trait of the month, but I do not expected him to "make a big deal" about it - nor does he expect that out of me. Instead, we have a private "deal" going where if he demonstrates the trait 5 times in a month ( he tends to demonstrate the trait numerous times a day but to avoid overkill I wanted to narrow it down to 5 really good examples of the trait) he receives a $5 gift card for ice cream. These tweaks to the original school wide idea have made it possible for Curtis to feel what the others are feeling and experience what the others are experiencing but fine tuned to his needs. This is a goal that I am trying to constantly reach with him - finding the balance between being one among his school but tapping into his individual needs as a student with Autism.

Caron, 1:1 School Support

By definition, A developmental delay is any serious lag in a child's physical, cognitive, behavioral, emotional, or social development in comparison norms for specific ages. The most common delays are children not crawling, walking, talking, etc. by a certain age. Global delays indicate a lag in all developmental areas.

Curtis' delays have taken a number of shapes and forms. His speech was very delayed, rarely speaking until about 3 years old, and he is still learning some of the basics when it comes to interacting with people and understanding feelings. There have also been a number of other cognitive and sensory delays. However, there are also a number of delays that no one would ever notice except those closest to him and they are often the most interesting.

For instance, Curtis could not process his sense of smell until he was about 7 and a half years old. He seemed to have no frame of reference for what something smelled like and it's rather difficult to explain the interpretation of a sense to a child. Out of the blue, about 8months ago he started to relate smells. It began with him recognizing the smell of pizza as pizza and realizing he knew the smell. He immediately began to relate other smells and realizing he knew what watermelon, popcorn, and pickles smelled like. It was a big deal for him and us. I often wondered if he was going to go through life never knowing what anything smelled like.

Last week on our way to Connecticut to see family, Curtis winked at me. This was something he had previously practiced to no avail. He was very proud of himself as he had been trying to figure out how to get his face to wink for months. All he had been able to do prior was shut both eyes and open them and would get frustrated that I could wink at him easily.

Today, he took a piece of scotch tape and rolled it up with his fingers like you would to hang a picture from its back. It doesn't sound like a big deal, but it was a huge deal for Curtis who previously deferred to an adult to roll him tape for him. All prior attempts had ended in frustration. There are other delays that continue. There are bigger ones like butt wiping and teeth brushing that he needs help with. Others like tying shoes and riding a bike, where he isn't too far being his peers but he isn't that close to getting them right either. But with every conquered delay his confidence increases. As parents and caretakers, every time he is frustrated by a delay we remind him of the large number of delays he has already overcome. And how we'll be there with him every step of the way to conquer the rest of them.

Greg, Dad

As stated on previous occasions, we love Easter Seals. Much of the success Curtis has had in school stems from strides made during his developing years at Easter Seals. Then Laura began working there and we still value our relationships with Easter Seals staff. As Autism Awareness month approaches, I am re-posting an e-mail I received from Easter Seals today. Pass on the questionnaire to anyone you may know who could use an effective developmental screening tool to assess a child's progress:


Developmental Milestones Screening The first five years are critical in a child's life. And this is the most important time to get your child support for a developmental delay or special need.

Children develop skills, or "milestones," at their own pace. How is your child doing? You only need 10-20 minutes to check with the Ages & Stages Questionnaires®, Third Edition. Your ASQ-3™ results will help you see if your child's developmental progress is on time and alert you to concerns that you can talk over with your health care provider.

Please note: ASQ-3™ is designed for screening, not diagnosis. It is a quick check for children from birth through age five. If your child is age six or older, please discuss his or her development with your child's health care provider, your local school district, or your child's teacher. Results from the questionnaire will be emailed to you within two weeks.

Below in the link to the questionnaire

http://www.easterseals.com/site/PageServer?pagename=ntlc10_mffc_homepageasq&autologin=true

The Flood of Water

I’m sitting there doing something when I begin to feel I’ve heard the toilet flush about five times in a row. Then I hear Ned call, “Alex has flooded the toilet!”

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”

“Ned!”

“What?”

“Ned, I need your help!”

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

“Jeff, I’m coming!” says my wife Jill.

“I’m not talking to you! Ned, bring me the dustpans!”

The only bathroom trouble Alex (13, PDD-NOS) has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from his typically developing younger brother Ned.

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex ripped the crap out of the car-washing sponge we bought for these floods. This is the sense of autism.

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

“Ned, bring the Swiffer!”

Ned does help. He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We went him back in half an hour to put them in the dryer. He gets a laundry lesson.

We have to look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated.

Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

I'm not sure how true this is of other kids with autism but Curt has a very hard time with rainy days. His mood often matches the weather even before he looks out the window in the morning. Rainy, cloudy days can result in a sluggish, unmotivated little guy who seems unable to summon the gusto to take on the world. Rainy Mondays, after a weekend of freedom, are especially tough.

Thankfully, today was beautiful

To the left is a picture Caron took while he was at school recess and below is a video Jamie took from swimming as Curt audibly practiced his extended stroke.

I introduced yet another "tool" to Curtis for him to put into his Coping Skills toolbox.  Any way I can eliminate my voice and my direction and still meet Curtis's needs is a good tool. This most recent addition is a menu of sorts that Curtis can chose from when he needs a break. The flip book is clearly called "What to do when I need a break". He wears it around the school like a bracelet and anytime his body, brain or emotions are feeling as if he needs a break - he is learning to flip threw his options rather than ask me first. The options in the book include:

1) Taking a walk around the school with Ms Barber.

2) Grabbing a snack and sitting in the quiet space while he eats it.

3) Taking a walk to the schools water fountain with a friend and getting some water.

4) Journaling in his self-time journal at his desk for 2 minutes.

This form of self-directed soothing is vital to his long-term goal of reduced 1:1 support. I can read his body language, his facial expressions and his energy like the back of hand at this point in our working relationship but there will be day when I am not working so closely with him. It is crucial that he knows what to do when he needs a break and how to get through stressful situations calmly and in a way that will benefit himself and his environment.

The work with Curtis is filled with focused baby steps - he is slowly getting to a place where his voice is getting more and more defined and his needs are getting better met by either himself or from his peers. My work with him is still vital in his growth but as a fellow teacher put it yesterday (at its best) while she passed by him in the hall she said, "Curtis - I have noticed such growth in you over the past three years. Your hard work has really paid off! Good Job!"

Caron, 1:1 School Support

It's not shocking when children on the spectrum refuse to participate in something out of the ordinary. Well, Curt finally won a persevering ticket at school. Each month its a different trait that teachers give tickets out for when we catch a student exemplify the trait. He has been against this whole thing (even though he could have won 50 tickets by now) but I have been able to see a difference little by little in him and his curiosity for getting one and accepting one. I finally found a time where I knew giving him a ticket for persevering would not freak him out - while he was drawing roads! He got so excited but really wanted to keep it a secret so no one would make it a big deal. He used it as fuel to focus on activities the rest of the day and would say, "Things are so good because I got a persevering ticket" :)

Caron, 1:1 School Support

This is how Curtis coped with an unexpected schedule interruption last week. By throwing his baggie of pretzels on the ground, "hiding" himself with a turned over table and retreating to the comfort of a multiplication poster he has already memorized. He didn't flip the table in a rage or anything, rather this table closing him in the corner is his way of being alone.  Curtis  tends to take surprises personally, generally feeling betrayed by his caretaker at the time, and it takes some work to get him back on track. But generally he needs some solo processing time first.

In this case, he was surprised one morning to learn he would be doing some testing  with the special ed. director and that his trusted 1:1 would not be accompanying him. Ideally, we would prep him a day in advance with this type of news, letting him ask as many questions as he wanted,  but this time it didn't work out that way. You see how he took the news.

This is also one of those instances where I can see those who don't understand autism rolling their eyes. He's spoiled, coddled, etc. It's easy to say if you don't know or understand him and children like him. But those of us who know him know what's running through his head. What will this be like? What about what I was supposed to be doing at 10am? Is that pushed back or cancelled? When will I be done this exam? How does this effect the rest of my day? He is noticeably overwhelmed by such a situation and no one's judgement of his reaction changes his process one bit. To him, at that moment, the sky is falling.


Before his exam he was clingy, nervous, and angry. Once he got through the testing, Caron walked him around the school to discuss the testing, why it came as a surprise this time, and how the rest of the day would still go as planned. There would be no more surprises though a surprise can still happen at any time. He still had X, Y, and Z to look forward to on the day and everything would be fine. As his parents, we are just thankful he has someone he can trust to get him through these tough times so he can stay in school for the 90% of the time when he is engaged, productive, social, and happy.

Greg, Dad