Children on the autism spectrum are not known for having the most diverse palate. Generally speaking, they will find a few foods they are comfortable with, such as chicken nuggets, and show little to no interest in most other foods. There have been plenty of meals where we've put pasta, meat, or vegetables in front of Curtis that have been rejected out of hand because of texture, appearance, or any number of other reasons. We rarely won the "eat it or go hungry" stand-off. He was willing to go hungry without thinking twice. But times they are a changing and tonight Curtis was willing to give Mexican food a shot. Specifically, he wanted to try a quesadilla, or as he knows it from Napoleon Dynamite, a "dang quesadilla". Hopefully this is just the start of a willingness to keep trying something new. Even if he did just more or less nibble the edges.

Greg, Dad
Jamie, 1:1 Home Support

For about the past 3 years, Curtis has been taking swimming lessons through the Center for Therapeutic Recreation, sponsored by Easter Seals, which develops programs for children with autism and other disabilities.  When he first started swimming, it took Laura and I all we could do just to get him in his “swimming shorts” (god forbid you call it a bathing suit because those are for girls) and into the pool.  Curtis would fight us all the way from the living room until the moment his swim coach inevitably peeled him off whichever one of us he clung to for dear life.
To this day, Curtis still tries to get out of swimming lessons just about every week, though it is much less of a battle than previous years.
We still have to use the locker that is one number higher than the previous week, a routine he has stuck to since he began swimming. It nearly went terribly wrong this week, as someone was already using locker 48, but after assuring Curtis that this was not a big deal, he chose to use locker 47 for a second time. Although we may seem a little cruel for having him go week after week I assure you as soon as he actually hit the water he is all smiles. 
When he first started swimming lesson, Curtis couldn’t swim much at all.  He had to wear a float around his waist and use a pool noodle. He was terrified to swim on his back because he was afraid he would hit his head at the end of the pool, which he had done once before and it's difficult to convince him it won't happen again.  I think all of us have said before on this website that we have all spent a fair amount of time worrying about Curtis’ physical safety which obviously extends to water. A year ago, Laura was happy that they would have at least 30 seconds to save him should he get into the water alone because at that point he could tread water for about that length of time before going underwater.  It has always been a goal in the back of my mind for him to be able to swim across the pool without assistance.  Last week, I sat on the side watching him swerve and circle his way almost across the pool before finally grabbing the sideline. 
I asked, “Curtis what in the world are you doing?” knowing he would have made it across had he just gone in a straight line.  “Drawing roads!” was his response. 
Of course Curtis had found a new way to do his favorite activity.
I told him after swimming that if he went in a straight line he would have made it across the pool.  He seemed a little surprised by this information.  This week, Curtis got into the pool, threw a noodle to his swim instructor and took off.  He made across the pool.  And back. And back across again.  All of the swim instructors cheered and Curtis could not have been happier asking if I taped it each lap that he did.  I am so happy to report that Curtis now stands a good chance in the open water for at least 50 yards.  Hallelujah!  Another goal set for Curtis and another goal exceeded.

Jamie, 1:1 Home Support

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

I saw coupons for a local water park this past weekend and didn’t hesitate to scoop up a couple for Curtis and myself. I didn’t know if he had been to one before, but he had had a solid and adventurous summer thus far so I figured we may as well give it a try. Laura showed him pictures of the park before our trip so he would have an idea what to expect and when it came time to go, he declared himself “ready to party.”

Curtis’ excitement was high, singing “Poker Face” as we pulled into the parking lot. I could tell he was nervous once we exited the vehicle as he repeatedly told me the same joke as we stood in line. “How do you wake up Lady Gaga?...Poker her face.” “Hahaha. That’s funny right, Jamie?”

Once inside, we set up an area with our things just in front of the wave pool. Curtis skipped into the pool and began jumping the waves and laughing. The water in the pool was rather cold so it wasn’t long before we chose to move on to something else. We decided to head over to this large inflated bubble with a pool at the bottom. Children are supposed to use ropes hanging from the top to pull themselves up and then bounce down. I was not allowed to climb up because I am too tall but I was permitted to enter the pool with Curtis. I was nervous waiting in the line because I didn’t know how Curtis would react when we entered. It was tough to tell if he would be able to pull himself up, if he would understand how he was supposed to do this, and if he would come down once at the top. When we got into the pool, Curtis stood in a line by a rope waiting his turn and watching the other children climb to the top. All of the other children would grab the rope and walk up the bubble using the rope to balance. Curtis grabbed the rope and somehow crawled up the 10 foot high bubble with little assistance from the rope. Once he reached the top he turned around, bounced on his bottom, crashed into the water and did it all over again two more times. We each had chattering teeth as we finished with the bubble pool so we decided to warm up for a minute then do some mini golfing. I suspected I would be doing at least 2 rounds of mini golf but after only one Curtis was ready for lunch.

Curtis was quite excited to discuss my lunchbox because I don’t usually eat when I am with him. He is a visual kid and I would guess that as we prepared for lunch he wanted to have a mental picture of what my lunch would look like. He questioned me the whole way back to our stuff about what color my lunchbox was and Curtis wanted to know the entirety of the contents before we got back to our things. He quickly approved of my floral lunchbox and ham and cheese sandwich, surprising as he would probably never eat something like that himself and usually only approves food he understands and accepts. As we ate lunch, I told Curtis he should look around and remember what it was like at the water park in case he was invited to go to another one someday. This way he would have a mental picture of a water park and know what to expect next time. He didn't exactly follow what I was suggesting but he probably has a diagram of the park imprinted on his brain already anyway.

After lunch Curtis was ready to hit the waterslides. He was very concerned as we approached the slide area because he was not tall enough for all of them. We came to a slide he was able to go on and we grabbed a couple tubes and approached the line. Again my anxiety began to build as I knew I would not be going down with him and it was pretty clear he had never done a water slide before. Curtis and I watched a few people go before us and listened to the direction of the staff member to make sure the handles on the tube were in the front. At this point I decided it was best if we branched off into two lines so I could go down the slide immediately after him rather than have a stranger in between us. I stood 4 feet away as Curtis adjusted his tube and effortlessly plopped himself down the slide. Twenty seconds later I was on my way down hoping to find him happy at the bottom. As I splashed into the pool at the bottom I saw Curtis still on top of his float with a huge grin on his face.

The next set of slides required a mat rather than a tube. I told Curtis to hold his mat sideways a few different times as he dragged it on the ground and nearly tripped over it several times. Finally I stopped, held up my mat and showed him what to do to handle the mat appropriately. At the top of the slide I had to explain to Curtis how to “scoot his butt” to get himself going. I explained it was just like sledding in the winter and pushed the mat as much as I could to help him start. Curtis, like many other children with autism, is a visual learner. After watching a few other children get themselves started on the slides, he was better able to understand what he needed to do.

As we approached the top of the line, Curtis looked at me and asked if he was holding his mat in the right direction, which he was. At the top of the slide he put down his mat and sat down. This time, the girl running the slide asked him to “sit back on the mat.” A look of panic came over his face and he looked to me for guidance as the woman repeated he needed to sit back. I sat back o my mat and told him “Sit like this.” He sat back and off he went. We ended up staying at the water park for about 4 hours that day. Four hours that Curtis was just like every other kid there. With the exception of his need for visual input to understand what he needed to do in some situations, Curtis’ autism was undetectable. I’m quite certain Curtis enjoyed himself because he said to me several times, “I’m having a good time with you here, Jamie. Can we stay till they close at 6 pm?” Another great summer adventure for Curtis whose confidence continues to soar with each new and successful experience.


Jamie, 1:1 Home Support

Tonight during hoops, Curtis had some new found knowledge of Lady Gaga to share, so thanks to Jamie for that. Here is Curtis' unfiltered, unsolicited take on Lady Gaga. I did not fact check this so...I guess he is right.

"I didn't like Lady GaGa until I went bowling. Her first hit was "Just Dance". She is older than Taylor Swift. Taylor is 21. Taylor Swift is actually her first album. Lady GaGa put out albums when she was 23, and 24, and 25. Her name is Stephanie Germanatta. She will put out another album when she is 27. She can do like....one a year or something like Diary of a Wimpy Kid books come out like once a year. She has an inappropriate video named Judas, and wears bad outfits in the video, so I shouldn't watch it but, I don't think there's swears in the video, though. I should just watch the hits, right? You should watch "Born This Way", dad" . It's on demand, you know"

Greg, Dad
Curtis


      This blog entry takes me back to the entry titled “7:28 is not 7:30” and reminds me about Curtis’ need for stability and predictability. At the beginning of this summer, Curtis wanted to me to choose to do the same thing every Tuesday, Wednesday and Thursday so that he would know what would happen each week. While I have cut him a lot of slack this summer, I was not willing to give him predictable adventures. In July, the Portland Red Claws started a summer kid’s concert series, which I have brought Curtis to every week. This past Thursday the weather report was grim so I decided we would do something other than a summer kids concert. Curtis is a busy kid and if there is something to do in the Greater Portland area for kids we have already done it. I looked outside our usual scope and saw that the Maine Aquarium had re-opened so I texted Laura about it before heading over. Curtis naturally did not want to go because it was something new and not the Thursday kid’s concert.

      After convincing Curtis to go, we hopped in the car for the hour and a half trip. I had been hiding my Lady Gaga CD's from Curtis because I agree she is not exactly the most age appropriate role model for him and I don’t quite know how to explain an unexplainable woman to someone who wants concrete answers. I do not know why she wore a meat dress and I do not know why she arrived at the Grammy's in a golden egg. The first thing out of his mouth when we got in the car was “Did you find the Born This Way album yet?” With Curtis it is all about a give and take balance, he had given and agreed to go to the aquarium, it was not my turn to give a little and let him listen to Lady Gaga. He wanted to look at the liner notes while we listened so I gave a quick look at the pictures and agreed. I found out she uses the word b**** once in that album and once in The Fame Monster album pretty quickly. Curtis wanted to know about every song and if there were videos. I answered and told him which ones had videos and that her videos were generally inappropriate for children. “Why?” “Because she wears inappropriate outfits.” “Why like what?” “They are just bad and you don’t need to see them.” “Well I’m going to look them up when my parents aren’t around and I’ll decide if they are inappropriate.”

        Curtis then wanted to know if her first name was Lady and her second name was Gaga. I told him no, that was her stage name, another difficult concept to explain to him, and that I knew her first name was Stephanie. Liner notes in hand he found her full name. Curtis likes to know how old people were when different things happened. “I don’t know,” isn’t an acceptable answer. I told him she was 25 now so he asked if the other CDs came out when she was 23 and 24. At this point I was winding around narrow coastal roads I was unfamiliar with so my answers to his inquires generally became “Yes.” At most times I try not to just agree with him because the world is full of “I don’t knows”, but in this situation he was already anxious about the aquarium so I relented and agreed that Lady Gaga was 23 when her first CD came out and that she would put out another when she was 27. It is interesting to see that Curtis, who likes concrete facts, regurgitated this information with his own spin, slightly different from the “facts” I gave him.

Jamie, Home Support

I’m not going to claim to have coined the phrase, “I’m having a weird thought about that,” nor am I going to claim it’s the best way I could have said Curtis was doing something that by any social norms is unusual, but it works for Curtis.  Anyone who knows or meets Curtis immediately falls in love with him.  He is charming and hilarious to say the least.  Because I care about Curtis, I have the responsibility of telling him if he is doing something that other people are going to think are weird to spare him possible embarrassment in school or other social settings in the future.  Curtis gets just as embarrassed as the next kid if something embarrassing happens to him.  He has come to a point where he no longer resists interacting with other kids to participate in solo activities.  Curtis wants to be liked just like everyone else so to help him with this myself and others around him let him know when he is doing something that others may not like or may find strange.  It all started when Curtis was going through an obsession with collecting coins.  He would stop at almost nothing to get coins.  I let a lot of these behaviors go because like many other activities he once was “obsessed” with I assumed this would pass.  One day we were in a convenience store when suddenly he was on the floor, completely flat trying to get coins from under a chip display island.  Needless to say the floor was less that spotless and I was horrified that he had his entire body pressed into it trying to get some pennies.  I had heard the term “I’m having a weird thought,” from another educator and it rolled out of my mouth at that moment.  Curtis was so caught off guard that he jumped up and immediately questioned what I meant.  While the idea of someone having a “weird thought” was challenging for me to explain and for Curtis to understand, it has been worth it.  Curtis has insisted from the get go that certain people in his life will never have weird thoughts about him and I have agreed with him on this point.  He also insisted that he doesn’t have weird thoughts about others.  After a few months of using the phrase we were on a playground where he saw one of his friends from school.  After several attempts to say hello to this child with no response Curtis looked at me and said, “Jamie I’m trying to say hi to him but he’s not answering.”  Seeing that the child was clearly not interested in the interaction today I responded with, “Well yes now isn’t that interesting?” “That’s not interesting, it’s weird,” he exclaimed!  I quickly took this opportunity to pull him aside and explain he just had a weird thought.  Since that day he has not questioned what one is or how it makes you feel.  We also have developed hand signals to use in public so that I could reinforce him when he was playing nicely with others or reassure him other children are behaving in unusual ways when they stray from the social norms he understands.  Finding a simple way to explain the complex thoughts we take for granted about social norms has been really important for Curtis.

Jamie, In-Home Support

Curtis was delayed in several areas as a toddler but walking and running were not among such delays. He walked at 10 months, was running at 12 months and full on sprinting by 15 months. I believe he sprinted from 15 months old until about 9 months ago, straight. He wouldn't get winded, was rarely deterred, and tried to run in any and all public situations. Drug stores were a favorite because he loved sprinted and hugging the aisles as he run on the occasion he broke away. I would take him to a small revine where kids would swim when he was 4 and 5 and we would spend the whole time running laps around the park. Curt's love of water couldn't get him in there among the 15 or so other kids who were splashing water on each other.

I never really minded the running, it was the nature of some of the running that just flat kept me up at night. While Curtis was aware that cars were dangerous he had no fear of them at all. Or bodies of water, or balconies, or anything else that could end his existence. What do you do when your child doesn't respect his own mortality? He seemingly took pride in trying to run away from us and into traffic and this went on until about age 5 when he fell in love with sidewalk chalk. One time when he was 4 I had to almost knock a woman over to catch him in the concourse of a baseball stadium when he broke away from me. He would do this thing where he'd get a little distance on you, shoot you a smile over he shoulder, and kick it into 5th gear. He didn't run so much as glide and it was always effortless. That incident and a recurring nightmare of him running into the path of a moving vehicle still serve as the boilerplate for any anxiety nightmare I may occasionally have.

At a 40th birthday picnic when Curtis was about 5, a friends sister in law saw me chasing Curtis and promised me one day the running would slow. I told her that was nice of her to say but that I didn't believe it. Not only would he not stop running but he'd run straight into his demise just to prove to me that he could. Well, he's 7 now and the running has indeed slowed. He respects cars now (though he still forgets to look when crossing the street), and he has a sense of his own mortality. However, the only thing to do until he slowed down was to stay on top of him every waking second and repeatedly explain the consequences of kamikaze living until he figured it out. As is the general rule with Curtis, it's a shitload of work that is worth every second.

Greg, Dad


I feel confident saying the first 18 months I worked with Curtis my primary goal each day was simply to keep him alive.  Before I met Curtis, his mother cautioned me that he was a bolter and that he was quite fast.  I felt confident with my past experience that this would be no big deal. In fact, Curtis took bolting to a level I had not previously seen.  As Greg wrote, Curtis would simply look over his shoulder, smirk and take off as fast as he could with no regard for collisions of any kind.  While today he no longer bolts, he still loves to run and his body seemingly requires it.  There are few things he enjoys more than a game of tag.  Curtis has learned over time when it's okay to run, be chased, and how to ask for these things.  We are fortunate enough to be in close proximity to a playground that is fully fenced in and this was a great place to take him and teach him how to ask to be chased.  When he took off running, because we were securely fenced in, I didn’t go after him unless he asked me. Once he mastered the fenced in running we moved on to trails.  Curtis would take off running on trails he knew well and ask me to come after him, eventually alerting me instead of just running. He also looked at some online coloring pages about street safety, his favorite being “Don’t stop in the street.”  Slowly but surely Curtis has calmed down and does not bolt at all anymore, not to say I ever let him get out of arms reach.  I was lucky enough to be at his house the day that he looked at his mom and asked, “Mom can we take the locks off the doors?”  Both exit doors had covers on them so that Curtis couldn’t open them simply because he would be out the front door if you turned your head.  Laura did remove the door locks that day and you could see the pride in both of their faces as she did this.  We now work on more functional safe walking, i.e., using crosswalks and waiting for walk signals.  It can be difficult to wait for a walk signal while it is clearly safe to cross, but Curtis is not ready to make that judgment without that little flashing light so I meet him at his ability and we continue to build. With patience, slowly but surely, Curtis always meets the goals set for him.


Jamie, In-Home Support