As I've stated before, I do a lot of my autism research based on what comes up on Linkedin. It's just that much easier when things show up in your inbox. There is a string that has gone around for a month or so where experienced parents of kids on the autism spectrum offer advice to parents of newly diagnosed children and information on autism. Below are some highlights from the string.


* Karen Sudom Breathe. Autism lasts a lifetime. You don't need to read everything and try everything to be a good parent. Your child is the same today as he/she was before diagnosis. I think approaching parenting as a journey takes away the panic that I've missed my chance if it isn't all perfect today.

*Debi Taylor Start by learning about how your child sees the world so you can learn that most issues are not chosen behaviors, rather sensory or avoidance survival tactics from overwhelm. Once you start seeing things from their eyes the best you can, you can start making decisions that best support your child. 

*Susan Gurry, Ed.D., BCBA-D; Play therapist • Take your time, do your research, and decide what is best for you and your family. Some kids do recover, but the 'how' and 'why' are not proven. There is so much heterogeneity in the autism spectrum that anyone who tells you that their method works on everyone is not telling the truth. What's clear from the research is that intensive early intervention is extremely valuable....but the evidence about whether it has to be all ABA or any other intensive (40 hours/week) intervention is not clear.
And everyone is going to want to sell you something: pills, vitamins, toys, CD's, reading programs, squeeze machines, flashcards....be careful and thoughtful about what you buy. 

I think the most productive use of your time is to stay engaged with the child...play with what he likes, have him eat one bite of non-preferred food before his preferred food, stay in his 'face'. 

*Renee' Barbier-Brown Autism isn't mental illness... each child is completely in tact. I read quite a bit in the early days... I read the most recommended books... Tony Atwood etc... I got involved with Easter Seals right away... they really helped because they were able to give us additional test and help us get along as a whole family. They helped us all grow in a great way. I slowly learned how to parent autism much better.

Jaye Reckers • Read as much as you can without going on total overload and remember that at the end of the day, no one will ever know your child better than you. Don't be bullied into something you don't believe in and ask for help when you need it. 

Carla Cummings • You never know what the future will hold. Your child will develop in their own, idiosyncratic way so no one can really predict how they will be functioning when thay are adults. Also, PLAY WITH YOUR CHILD! Board games are wonderful teachers. Join them in their interests and they may eventually join you in your world. And last... NORMAL IS OVERRATED -- noone ever changed the world by being normal and average!

Cinder McDonald OK, new parents, your kid is never going to be "like you". The things you get to brag about your kid doing will be markedly different from the things other parents get to brag about their kids doing. Your kid will have a lot of ups and downs, with more downs than ups. But your kid is amazing. Your kid will show you a world that you never knew existed. You will see wonder in the most ordinary things. You will never take a hug for granted. If you work very, very hard and battle with systems that act like they hate you, your child will grow into an adult who will surprise you with all they are able to do.

Jennifer Lee  Being a newly diagnosed parent - I have to say, remember there is always hope. I believe that if we could not handle this it would not have been put in front of us. The best advice I have gotten from anyone is "I am the only one who is going to advocate for my child and always follow my gut." It's not the end of the world, they are still your wonderful child, you can still have expectations and dreams for them. I plan to do whatever it takes to make sure my son has the best life possible, the same thought I had before we knew about the Autism.



Greg, Dad

Around Wednesday of last week, Curtis started telling me I had to bring him to school early on Friday so he could hang up the numbers. I didn't know what this meant and he had a hard time explaining it. He reminded me about 10 more times before Friday morning and got antsy when the day came that we wouldn't get to school early enough. He explained as we walked to school that each Friday, three sets of numbers were hung up and he wanted to be the one to do it. I believe he thought someone might beat him to it if we weren't at least 10 minutes early. When we got to the classroom, he showed me where the rest of the number lines were and how eventually they would wrap around the entire classroom. He then surrounded himself with the numbers before telling me there was 200 numbers total and he thought there should be more. He was especially excited about the negative numbers that started the border.
Curtis finds great comfort in numbers as do many on the autism spectrum. Before he began drawing roads, he used to regularly write strings of numbers with his sidewalk chalk. He does Sunshine Math in his free time or to calm down when he's feeling stressed, including multiplication. Since kindergarten he has been able to remember the birthdays of all his classmates and has long since had his family members birthdays committed to memory. He loves license plates and keeps an old one on his desk that he says he wants to put on his car when he is 16. He memorizes plate numbers as well. Curtis remembers a variety of phone numbers and can recite them even when he hasn't seen or dialed them in some time. He remembers street addresses with ease and seems destined for a fascination with social security numbers, bar codes, and any number of other numeral strings.
Curtis has shown similar aptitude with letters. He knew the alphabet and was reading by the time he showed up for kindergarten and aces his spelling tests now in second grade. But his relationship with numbers seems more intense than with the alphabet. He gets energized by numbers and as a parent who sucks at math, it's exciting to see where that interest could take him. Tomorrow is Wednesday so I'm sure the chatter will begin that there's two days until the next sets of numbers go up and how we'll have to be sure to be the first ones from his class to show up at school and hang them.


Greg, Dad

We were recently contacted through this site by Magnificent Minds, an  Applied Behavior Analysis (ABA) center in Toronto with a holistic approach to education. The parent testimonial complementing the teacher who targets her son's needs and implements techniques that address these needs hits home for us. We feel lucky to have had excellent teachers and aides like this for Curtis for the last few years.
One of the common questions we get from friends is wanting to know what Curtis' aids do when they work with him. Below are examples of the work Curt's aids do and why it is so valuable in aiding his development.

It's very easy for Curtis to get off track at school. He is a couple of years ahead in math and reading but a couple of years behind his peers socially. This makes for all kinds of awkward situations that can leave him confused and sometimes defensive. He has a hard time at school without a very defined schedule. Recently when Caron knew she would be out, she broke the day down into 10 clearly defined periods of time for the substitute, including where to lead Curtis at recess so that he would feel comfortable and built in time for reflective journaling he likes to do at 1pm. Knowing that Curtis would be a little nervous with a sub he didn't know, the schedule was constructed to keep him busy but comfortable. The best case scenario for Curtis. He likes doing the same things at the same time whenever possible and this type of front loading prevents Curtis from having an otherwise lost day at school.
After school, the work Jamie does with Curtis helps him to overcome different challenges presented by his autism. She helps him to initiate conversations and stay involved once it has started whether at the playground or a grocery store. Goals include getting Curtis to make eye contact with people he does not know well when he speaks with them. Currently, there are still many times that he won't even bother to make eye contact with people he trusts. When I come home from work Curtis will ask me how my day was and sometimes offer to tell me about his day. These are not questions that are instinctual for Curtis to ask, but working with Jamie has helped him to understand the rules the rest of us play by. That these are the types of questions you ask and this is why you should be interested. Caron and Jamie help with the things that Laura is now trained to do but I am not and Curtis has benefited in his development tremendously with their help.

During these very important developmental years it's great to have people like this in Curtis' corner.

Greg, Dad

The answers to a recent interest inventory Curtis took at school

1.) My favorite kind of pet- Bunny
2.) I am really good at- Art and Math
3.) I collect- Coins
4.) Something I really like to do is- Draw Roads
5.) I take lessons in- Swimming
6.) Something you should know about me- My favorite color is red and I have autism.
7.) The worst show on T.V. is- Baseball
8.) I read books about- Big Nate, Animals, Science
                                                                                 9.) The food I really hate is- Carrots
                                                                                 10,) The best tasting foods are- Red Peppers, Apples, Sour Pickles, and Watermelon.

Curtis

Curtis' coins more closely resemble a hoarding than a collection. While he has cooled in his pursuit of coins in the last half year, he does still hit up family members for change and does well at Nana's house on the weekend. He keeps an open roll of pennies, nickels, dimes and quarters on a shelf in the living room and marches a finished roll up to a box in his room too heavy to lift. He then adds the sum of the new contents to the last figure on the sheet for a new total. So far there is still no intended use of the proceeds as he expects to never cash any of it in for any reason, ever.

Greg, Dad

Along with the survey, Curtis also filled out a worksheet on what he can and can't do when he grows up.

I will be able to

A.) Tie my shoes
B.) Watch inappropriate videos (because swearing is just so funny)
C.) WIpe my own butt

I won't be able to

A.) Ask for help tying my shoes
B.) Cry in a Store
C.) Order off the kids menu!

Believe it not that this is Curtis’ reaction to what he now calls his favorite cupcake shop. When I met Curtis a few years ago he had a pretty short list of foods that he would eat. Not only was the list short but things had to be prepared in specific ways. It took me about a year and a half before I could manage to pull together an acceptable peanut butter and jelly sandwich. One day Curtis was eating an ice cream cone at McDonald's while I had an M&M blizzard when I plopped an M&M on top of his ice cream cone. Curtis looked at me like I had lost my mind and ate all the way around the ice cream cone without going near the M&M. Today, with a great deal of work from everyone around him, Curtis has expanded his pallet exponentially. One thing that I think made this a little easier was letting Curtis pick his own food.
By picking his own food I mean literally going to the strawberry patch and picking a strawberry. Once Curtis realized that he liked strawberries it was a natural jump to go blueberry picking a few weeks later. Curtis is a pretty big fruit fanatic so it wasn’t a big leap for him to like these foods as well. ( fruits at supermarket, supermarket in general) This may just be my perception, but it seems as though Curtis is more open to this in the summer. Perhaps it's because he doesn’t have the demands associated with the school year. This summer Curtis tackled vegetables in a big way. It became a little ritual on Wednesday mornings to go to the farmers market and get some berries. One day they had a mix of blueberries and raspberries so I grabbed that rather than our usual plain blueberries. I also grabbed a couple of honey sticks at the register. Curtis was a little upset with my raspberry mix but I was able to convince him to try them. I also got him to try the honey stick, which was another hit. Feeling bold I asked if he would want to try a cucumber. I let him choose which one he wanted and we headed home. I cut the cucumber into circles and sprinkled salt on it tell Curtis it was almost like a pickle. Upon first bite he looked disappointed, but after that first bite, I couldn’t stop him. Laura ran with the veggie trend from here getting him red, orange, yellow and green peppers, all of which were instant hits. Curtis has tried a few more things since his new found love of vegetables developed this summer: purple peppers, corn on the cob, birthday cake pops from Starbucks, iced coffee (I knew he wouldn’t like it but would
also never ask me again so I let him.), many different ice cream flavors, frozen hot chocolate, celery (which he chewed up and swallowed despite the horrible reaction.) and ranch dip. None of these last few things really stuck but the important thing is that Curtis is now able to take that leap and try new foods.

Jamie, 1:1 Home Support

Hearing sensitivity for kids with autism spectrum disorder is quite common. Helping a child on the spectrum understand his senses can be hard, since he is often more sensitive in one area and less in another. For instance, Curtis has a hard time likening smells to each other, be they good smells or bad. He has always been very sensitive to sound and that's an issue every day of his life, especially at school. Curtis had a fire drill at school this week and Caron makes sure to get advanced notice when these will occur. About 10 minutes before the fire drill goes off, she leads him just off campus by an Oak tree he likes and waits the process out. A fire drill, which can be a negative potentially throwing his whole school day off course, is instead turned into a positive. A small break where he can anticipate the fire drill from afar and not be disturbed by the blaring alarm.
A busy cafeteria is a source of volume that Curtis generally can't handle without some help. He is usually only capable of locking into one sound and a cafeteria offers too many "crazy" options as many of the kids have "high energy". Curtis spent most of his lunches outside the cafeteria during his kindergarten year, in a quiet area with Caron or in a small group lunch. Starting in first grade, Laura began packing an mp3 player and headphones in his backpack and Caron would help him get them on at lunch time. When Curtis feels comfortable, he can remove them and talk to friends. When the volume is too much, he can get lost in some Taylor Swift and drown out all other noises. It's been working great for him.
Protecting Curtis from loud noises is an instinct for those who know him best. A few days ago when we were playing and a fire truck drove by, I reached my arms out and covered his ears without even thinking about it. Curtis prefers not to enter bathrooms with automatic hand dryers if the bathroom has occupants. Horns, sirens, construction, yelling, any number of loud noises can cause a massive turn of direction in Curtis' mood. While loud noises can't always be anticipated, reacting to the situation for his benefit is what's most important.
There are various sound therapies and tools available though we haven't directly explored them. Sometimes headphones work and often times he just needs to be removed from a situation until his senses are calm and he feels relaxed again. He let's us know when it's all too much and we adjust his environment accordingly. Ultimately, we do want him to be able to take on the world as it is and he understands it can be a noisy place. Slowly acclimating Curtis to these situations and respecting this character proves the best way to tolerate these sounds over time.


Greg, Dad

im listening to victorious soundtrack and i watched a brand new episode of spongebob squarepants yesterday and went to chuck e cheese too! i get in trouble from playing my cousin jayden on saturdays! second grade is awesome! i like my new classroom and i knew all my friends from last year! i got the school store open again and i got two new pencils and a second grade pencil! its good to be back at school but i miss summer! its almost halloween but im going to be batman this year! its getting cold out for shorts!

Curtis

This was a fun Halloween. Curt's costume was fitting as he sprinted the streets of downtown Portland in a glide that resembled flight. He didn't knock on doors so much as soar past them. He didn't care about the candy, an apple was good enough, and he didn't like getting dressed up in a costume. Over the years his mom's love of Halloween has won out over his desire not to conform to wearing a costume.This year he is already excited to sport a Batman costume more than a full month ahead of time.

Greg, Dad

This blog from psychologytoday.com explains some non-typical, or as we call them with Curtis, "unexpected" behaviors, from people on the spectrum. Sensory overloads caused by crowd noise, bright lights, sudden loud sounds, sensitivity to touch, etc. result in behaviors that can be tough to witness and difficult to correct. Time and patience go a long way and it's a learning process for the child and parent. Here are some of the behaviors mentioned that immediately reminded me of Curt.

1.) Supermarket floor tantrums: These were pretty embarrassing to be sure but it was cool to read this as an item on a list. I hadn't made the connection that this behavior was common with autistic children, I thought maybe it was a Curtis specialty. These happened frequently enough when he was younger where Laura and I would try not to bring him into a grocery store if we could help it. I think at the time I assumed it was something he just had to get used too. In hindsight, the fluorescent lights and noise may have just been too much to handle when he was very young. His main goal in any grocery store once he could walk was to free himself so he could sprint down the aisles. When he wasn't allowed too a tantrum was likely not far behind. If he did break free, you never saw a happier kid in your life as he ran down the aisle.

2.) Haircuts- When Curt was younger it was just easier to let his hair grow long. He was very sensitive to getting it cut and a pair of clippers was out of the question. Actually, clippers are still out of the question. I think we've only done that once.  Having his hair pulled and cut at the same time there is a buzzing sound in his ear proves too much to handle and we respect that. We have turned a trip to Snip-Its into an event and though sometimes apprehensive, he's willing to do it.

3.) Classroom Focus- The blog mentions the difficulty for some children on the spectrum to copy down homework and simultaneously listen to a teacher's instructions. This is just one of many reasons Curtis is helped by having an ed tech in the classroom. He has not yet developed that ability to handle two tasks like this at once. On his own, An entire school day would be lost for him in the first 10 minutes as he missed one crucial instruction while paying attention to another. Being able to pay attention to two things at once is something we constantly work on with Curtis and is a huge goal in mainstreaming him in school.

What I found most interesting about that blog was the comments. One in particular from a teenager with autism and others discussing the topic. As "neurotypicals", our focus can be to try and change the way kids on the spectrum are doing things and try to get them to execute a script. The comments express that it's not always this easy. Even for a person on the spectrum who has been taught a script, the over stimulation of a situation can force all that out the window. Any one of us can relate to not doing what we're supposed to do even if we know what we're supposed to do because of a situation we're presented with. As a parent or teacher, all we can do is be patient and try to help them with what they are going through because we don't know what that type of over stimulation feels like. Their experience is very different than ours, always has been, and always will be. In many ways, it's unrealistic to expect someone whose brain is wired differently to conform to our ways of thinking. All we can really do is help them.

Greg, Dad

I've told the following story a couple times over the last few years. It's scary to some people, so I generally choose my audience, but since no one actually has to read this, consider this a warning if you scare easily. Maybe I should have saved this for Halloween, but it's a story that's fun to tell so here goes.
One thing you hear now and then about autistic children is that they tend to be "Indigo", with bright auras and the ability to perceive things the rest of us don't. It does makes some sense. Kids like Curtis are open minded and absent many of the preconceived notions of typically developing children. They need explanation as to what is "normal" and might not think anything weird of seeing or hearing a ghost.  Anyway, he's never mentioned seeing a ghost, but this little story happened in 2006, not long before Curtis turned two years old, and it's 100% true.
Laura's grandparents had come up for a weekend visit and Laura and I set up the futon in Curt's room to fit everyone into our 2 bedroom space. We gave her grandparents our room and slept in Curtis room not far from his crib. The first night was normal. We both slept fine and there was nothing out of the ordinary. We had no reason to expect anything out of the ordinary. Night two however was a little different.
Laura and I went to bed around 10:30pm but she has an easier time falling asleep than I do. She fell asleep a few minutes after getting into bed while I lay there listening to the clock in Curt's room. I probably drifted off at about 10:45.
At about 11:30pm, Laura and I both shot up out of a sound sleep with me yelling "WHOA!" and her saying "Oh my god, what was that!". I knew immediately she heard exactly what I just heard and also that she would not want me to confirm it, but of course I had too. I couldn't wait too. The conversation went something like this.

Greg: "You just heard that too, right?"
Laura: "What did you hear, no wait, don't say it"

There would be no denying it if we both heard the same thing

Greg: " A woman's voice just said, "What are they doing in here?"
Laura: "Oh my God, shut up"  (pulls cover over her head briefly)

We had both heard the same exact thing

I can't express enough how clear this voice was. It wasn't angry, it wasn't upset, it  just sounded curious. We were both asleep and it was so clear we both looked right above Curt's crib and to the right when we shot up where someone should have been standing. Looking at the same spot and confirming we'd heard the same sentence. It took a long time for Laura to get back to sleep as we discussed what we'd heard. I was pretty sure I was staying up the rest of the night. I laid there thinking about what it could have been. All windows and doors were closed. I dismissed Laura's grandmother as a sleep talking candidate as she speaks with an accent and this voice had none of that. It was just a woman's voice asking a matter of fact question.
So I laid there for about an hour and a half just looking around the room, waiting to hear something again. As I finally started falling asleep, all of a sudden the smoke alarm in Curtis' room starts blaring. This smoke alarm had never gone off before and never again after, but here it was blaring away to punctuate an already bizarre night. Laura jumped out of bed and started fanning the smoke alarm with her pillow. It added levity to the situation and made me laugh since there was no smoke around. I left the room and Laura's grandmother was in a slight panic in the hall, understandably, woken in the middle of the night by a smoke alarm. She followed me downstairs to confirm nothing was on fire and we returned to our rooms. I never let on that I was basically terrified at this point but that it had nothing to do with a potential fire.
I'm pretty sure I didn't fall back asleep again that night. I just laid there trying to make sense of both events. The conclusions I came to were these. I think the smoke alarm was a playful nod to me from whomever it was we heard. I don't believe we were meant to hear that question, but that whoever it was knew they were overheard and the smoke alarm I believe was intended as a playful acknowledgement. One that I wasn't particularly asking for.  This is just my guess. The other conclusion I came to is that there was nothing malevolent about that voice. It seemed more like a protector or a friend who just didn't understand why we'd choose to sleep in Curtis' room. Like, don't they know I have things covered during the night? The one thing I always wonder is if it was a ghost of some sort, were they posing the question to a sleeping Curtis, or were they asking another ghost? And if it was another ghost, how many of these things are visiting my kid?
I can't say for sure it was a ghost we heard but it was definitely a loud and clear disembodied female voice coming from a specific location in the room so I don't know what else you'd call it. But I do believe whatever it was liked Curtis and meant him no harm. That was the last night Laura's grandparents were staying that weekend so we returned to our room the next night. After that and for months, I would make sure his bedroom door and ours were both open and I would always be listening for anything out of the ordinary during the night. But truth be told I was in no hurry to sleep in that room or hear that voice again. Even if it meant no harm.

Greg, Dad