Being Flexible

About six months ago, Will was finishing his first year of special ed preschool. He had made a lot of progress since he started preschool last fall, even despite moving across the country around Thanksgiving. The transition into his class here in Oregon was very smooth and his teachers were great. I documented some of his progress in a recent blog post (you can read it here).

Even before Will's diagnosis with ASD, we felt like Will's summer birthday (August 17th) meant that he would turn 5 years old just before the cutoff for kindergarten to begin. Our plan all along had been to keep Will in preschool until he turned 6 and then start kindergarten that year. Unfortunately, the way special ed services are set up in Salem, children under 5 can receive services from the Willamette Educational Services Department, but once a child turns 5, they must receive services from Salem-Keizer School District.

In short: Will could not do another year of public preschool, since the school district does not provide preschool. In May, we had a transition meeting with Will's preschool teachers as well as the principal at the elementary school closest to us (the same one Ashley attended as a child) to discuss the best way to meet Will's needs.

Sumpter Elementary is also the school with the big US map that Will loves

As the meeting approached, Ashley and I discussed some of the options we thought would be available to Will and prayed about them. We were concerned that Will was too far behind his neurotypical peers and would be out of place in a kindergarten class with its heavier emphasis on academics. We decided instead to enroll him in a private preschool that Ashley and her siblings attended.

At the transition meeting, Will's special ed preschool teachers recommended that he attend a mainstream kindergarten class this fall but only for half a day until he could build up his stamina to be there longer. They also would hire an aide to be with him at all times in order to keep him from running away (a continuing struggle with Will) and to help him stay on task with his work. While at school, Will could be tested for occupational therapy as well as speech therapy. If they determined that he needed such therapy, he would receive it from the school.

Ultimately, we told the school district that we'd like Will to have another year of preschool before advancing to kindergarten. We felt like the most important thing for him would be to have more interaction with peers in a less structured environment. In other words, we wanted to give him a chance to "be a kid" for another year before starting school.

The administrators at the elementary school were accommodating but also emphasized the importance of having all the paperwork ready on their end in case we changed our minds. In the meantime, Ashley met with the teacher from the private preschool and discussed Will and his needs. Ashley even provided Will's IEP. The school has the proper training and credentials to be able to accommodate children with special needs. In fact, they have had students with autism in recent years. The teacher gave us assurance that she and her co-teacher would be able to meet Will's needs.

Soon, the first day of pre-k was upon us. Will was excited to start school again after spending WAY too much time with his younger sister this summer. He was also looking forward to being in the same class as his cousin Anthony, who is only nine days older than Will. Here is a picture of the two of them on the first day:

Within the first week of Will attending the preschool, his teacher reached out to Ashley and expressed her concerns that it was too difficult to keep Will from running away without disrupting the class. Given the number of children in the class, and the limited manpower of the school, it would be necessary for Will to have a full-time aide.

A flurry of text messages and phone calls between me and Ashley led to us deciding that maybe we should re-think having him be in kindergarten this year. Unfortunately, we moved into a new rental home in July, and it was in the boundaries of a different elementary school than we had done all the paperwork with before. Nevertheless, Ashley went straight to the school whose boundaries we now live in and started the registration process there.

By the end of the day, Ashley had received a phone call from the principal assuring us that Will would be welcome to start attending kindergarten immediately and they would make arrangements for bus transportation and would also hire a full-time aide for Will. By a weird coincidence, Will was sick for the next week or so. By the time he was healthy enough to attend school, everything was in place for him.

So far, Will has seemed to do better than we imagined he would in kindergarten. It helps that he is only there for half a day at a time. In fact, he is often quite tired when he comes home. He also has a fantastic aide who meets him at the bus stop and rides to and from school with him. We are able to get regular reports from her at the end of the day and we get detailed weekly reports from his teacher.

Will still has a difficult time not running away constantly but he is doing better. Some days he only tries to get away once. Another area we find promising is that he seems to care more about the fact that there are other kids in his class. Whenever we would ask about his friends in preschool, he wouldn't really say anything. It was like he didn't even notice there were other kids there. On his first day of kindergarten, I asked if he made new friends. He responded by telling me the name of a girl who sits next to him. 

One thing that is also helpful is that two of his kindergarten classmates are also in his Sunday School class at church. The mother of one of those girls recently told us that her daughter described Will as "the one who likes to run". That's a pretty good summary of his personality.

Will's teacher has been motivating Will to behave throughout the day by rewarding him with a fun activity before he goes home. It is sometimes reading a book or playing with a certain toy, but often it is engaging in an activity with one of his classmates (playing a board game, building with blocks, using play doh, etc).

I've talked before about Will's ability to read at a higher level than normal at his age. One thing his class has been working on is learning vocabulary words which are written on flashcards in the shape of hearts. There are several different groups of words based on the color of the paper heart they are written on. The kids are supposed to work on learning the words and then passing them off in class by demonstrating that they can read them all.

Will's ring of heart words

Will recently became the first kid in his class to pass off ALL of the words in ALL of the colors. According to his aide, one of the other students came up to her and asked "Did he REALLY read all of the words?" and the aide said she was a little annoyed that the other student didn't believe it. In a few shorts weeks, she has gotten to know Will very well and she knows reading is one of his strengths. It's nice to know that she is also proud of Will's accomplishments in that area.

The hearts Will earned by reading all the words.

I think I've mentioned before that Will often has a hard time being flexible with plans changing. The last few months have involved a lot of necessary changes and he has handled them like a champ. One thing that we definitely need to give some credit to is the TV show "Daniel Tiger's Neighborhood". If you are not familiar, it is a cartoon on PBS based on characters from "Mister Rogers Neighborhood". Throughout the show, Daniel Tiger repeats shorts songs to teach kids how to cope with things like frustration, being scared, and plans changing.

On several occasions, Will has responded to a change in plans by getting upset, but calming himself down by singing "Things will change and that's okay / today you can do things a different way."

Life never seems to go the way you planned, and having to make changes is inevitable. We feel very fortunate to have Will's recent schooling needs met fully. In hindsight, we would have done things differently but it did give us a chance to figure out what was truly important for Will. It's not always going to be this easy, but it will help if we are willing to be flexible along the way.

Rose's Day

This is going to be a bit of a departure from my recent posts about Will and his progress since being diagnosed with autism. That's because today is a special day for our family. It is what we have come to call "Rose's Day". On September 10th, 2014, we said goodbye to our second child, Rose Marie, who was stillborn at 22 weeks. For an account of that day, please read Ashley's post from this blog entitled "Mother of Two".

Following Rose's passing and burial, Ashley and I wondered how we could best remember and honor this child who was is very much a part of our family even if she was only with us for a short time. One way developed rather organically as we found ourselves visiting her gravesite regularly. 

I never imagined that a cemetery would become one of my favorite places to visit, but Mt Calvary Cemetery in Richmond is my own little piece of Heaven. It is always so peaceful whenever we had visit and Will always recognizes it as where Baby Rose is. My parents and Ashley's mom have also been able to visit Rose's peaceful resting place.

Now that we live on the other side of the country from Richmond, visiting the cemetery is nearly impossible. However, we still try to commemorate Roses membership in our family by including a rose (or multiple roses) when we take photos together as a family. 

   

Shortly after Rose passed away, I had a dream in which we were visiting with some friends of ours. In my dream, Will was a little older than he was at the time as well as our friends' two children. In addition to these three kids, there was a little girl who looked to be about a year old. She was wearing a white sun dress and wavy blonde hair. I stared at this little girl as she toddled across the room. I wondering to myself who she was when a very distinct impression popped into my mind "This is your daughter."

I woke up from the dream slightly confused and it wasn't until hours later that I had a sudden realization: the girl in my dream was Rose. I shared this dream with Ashley and my family and my impression that I got to see what Rose would look like as a one year-old.

Earlier this year, Ashley commissioned a family portrait based upon the dream I had three years ago. She asked the artist to draw Will and Felicity at their current ages, but to include Rose as she would be this year.

99% of the time, when people ask me or Ashley how many kids we have, we say two. Deep down I know the real answer is that we have three children but that I don't get to meet my second child until the next life. Until then, and especially on her day, I will continue to preserve my memory of my baby Rose Marie.

"Our loving Heavenly Father knows our hearts. His purpose is to give us happiness. And so He gave the gift of His Son to make possible the joy of family bonds that continue forever." - Henry B Eyring

Communication

This is a video Will and I made a few days ago. It's a good representation of what it is like to interact verbally with Will. It may not seem like it, but this is a VAST improvement over what it was like to try and talk with Will a year ago when he was first diagnosed with ASD.

For the last several months, Ashley, Will and I have been in a program called Parent Child Interactive Therapy (PCIT). It is offered through the county health department for families who have children with special needs including communication or behavioral issues. The principles can be applied to a variety of settings and even with kids who aren't special needs. In even a few short months, we've seen some great improvement not only in Will's communication and behavior, but it has also helped us learn how to interact with him in more positive ways.

Will reenacts the Pixar short film "Mater and the Ghost Light"

Every day at home, one of us has one-on-one playtime with Will called "Special Play Time". We usually do it after dinner while the other parent is putting Felicity down for the night. We put away all of Will's other toys and get out his box of Special Play Time toys that he only gets to play with during SPT. We set a timer for five minutes and Will gets to lead the playtime however he wants as long as he follows two rules: 1. Stay in your seat and 2. Play gently with the toys.

During this five minutes, we are to follow the "PRIDE" method which I will outline here:

PRAISE: Give a much praise as possible when Will follows directions and obeys the rules of Special Play Time. This can be labeled ("Good job staying in your seat") or unlabeled ("Way to go"!).

REFLECT: When Will makes a statement that is true or correct, reinforce that he has said something right by repeating it with emphasis on what he said that was true. ("The car is blue." "The car IS blue!")

IMITATE: Reinforce good behavior by imitating what Will does. For example, if he is humming quietly to himself rather than making a lot of noise, hum in a similar fashion. Make the same animal sounds that he is making while playing with animal toys.

DESCRIBE: Narrate what Will is doing, how he is playing with his toys, what he is saying, etc.

ENJOY: Have fun with it and try not to get so caught up in the rules.

Felicity was apparently annoying Will so he boxed her in with pillows.

Doing these things sounds pretty easy and doable but there are also a few things that you have to avoid. For starters, you can't ask ANY questions. If you need to get information from Will, you have to phrase it like you are thinking out loud about something ("I wonder what toys we are going to play with tonight..."). You also can't use any words or phrases that sound like you are directing the play or trying to control Will's behavior. This is words like "Stop", "No", "Quit", "Don't" and "Let's do (blank)".

If you watch the video again, you'll notice that I am trying to apply some of the things I'v listed above even though it's not during Special Play Time.
1 I described him poking his head
2. I imitated AND praised his quiet humming to himself
3. I attempted to use the "I wonder" phrasing to get an answer out of Will twice before finally breaking down and asking an actual question (which he ultimately answered)
4. I successfully avoided saying many of the forbidden words and phrases.

The "homework" portion of PCIT is only half of the program. The other is a weekly observed Special Play Time. This takes place at the therapist's office in a room with a one-way mirror. Ashley and I alternate from week to week taking Will. The therapist asks us questions about Will's progress since the last visit before leaving the room to observe Special Play Time for five minutes. After five minutes she starts to coach us on how we can better apply the principles during our play. She does this through an earpiece we are wearing while we play with Will. Afterwards, Will gets to eat a treat (usually he picks Cheez-its) and we get a score on how well we did during the observed five minutes and we get advice on what to do at home. Once a week, another therapist comes to our house and observes Special Play Time to see how Will does on his own turf.

Will has converted my old Ghostbusters toys into containers for holding Cheez-its.

The therapist always reminds us that we're only required to follow the PRIDE method during Special Play Time but if we find ourselves incorporating it into our regular interactions with Will, that is perfectly fine. We've taught Ashley's parents and siblings the PRIDE method and pretty much everyone in the immediate family uses "I wonder" statements when they are trying to ask Will something. It all sounds crazy BUT IT WORKS!!! Will rarely answers a direct question, but if you rephrase it as an "I wonder" statement, he somehow feels more compelled to response.

I think the most amazing part of all this is that Will now starts conversations with total strangers even if they aren't following the rules of the PRIDE method. We were at a park playground on Saturday and Will probably said hello and hugged five random kids he had never met before. One of them was probably 2-3 years older than Will and seemed a little weirded out by Will hugging him. When Will sensed that his new friend wasn't reciprocating and wasn't saying anything, Will looked him in the eye and said "Can you talk?" I know Will had classmates in preschool who were nonverbal so it was interesting to see him try to understand why this peer was not interacting with him either verbally or nonverbally. Furthermore, it was encouraging to know that Will WANTED to interact with another child that badly.

Will (left) climbing on the playground equipment with one of his cousins.

In another example, we had two men from church (our Home Teachers) come visit us on Sunday afternoon. Will had never met them before, but sensing that we knew them, he climbed up on the couch and sat between them, asking to be squished "like a pancake". When they eventually got up to leave, Will said "You need to go!" Almost immediately he hugged one of them and exclaimed "I will miss you!"

In my last post, I reviewed Will's strengths and weaknesses. A year ago, social interactions and verbal communications were two of his major weaknesses. They still aren't strengths, but it is encouraging to see the progress he has made in these two areas. It is also exciting to see that through PCIT, I am actually contributing to Will's positive growth.

Speaking of strengths, Will has really kicked his reading skills up a notch lately. He found my old Calvin and Hobbes books and now likes to read them out loud before bed. Here is a video of him reading one recently.

Progress: Strengths and Weaknesses Revisited

It has been almost a year since Will was formally diagnosed with Autism Spectrum Disorder and I felt like it was a good time to update everyone on ways that he has progressed in the past twelve months. Shortly after I started blogging about Will, I wrote two separate posts detailing Will's strengths and weaknesses. Here I'll attempt to explain how these things may (or may not) have changed in a year.

Strengths

Reading - I touched on this in my previous blog post. Will enjoys reading so much that he'd forget his anxiety of leaving for school by getting lost in a book. Often we find him reading alone in his room. He likes to read out loud or quietly to himself. His preschool teacher told us that the kids in his class are usually given the option of either playing outside or reading a book after they've completed a specific task and that Will almost always chooses reading a book.

Will's interests in reading are VERY diverse and include a healthy mix of fiction and non-fiction. He currently has books about weather, electricity, buildings, music, the human body, space, dinosaurs, Rome, and maps. I keep waiting for Will to develop a fixation on a particular topic but he seems too interested in learning as much as he can about everything in the world around him.

Building Things - If you follow me on Facebook or Instagram, you'll know that I frequently post pictures of impressive things that Will has built. Below is a picture of the 4th of July float Will and I rode on during a parade this week as well as his lego reproduction of the float and the tractor pulling it. Will did this completely on his own with any help or encouragement and yet when he was finished, we knew immediately what it was.

A few weeks ago, Will asked me to build the Eiffel Tower with his toys called Magformers. They are plastic shapes with embedded magnets that allow you to snap them together to make three dimensional shapes and structures. I made an attempt at building the tower but gave up when I couldn't figure out how to build separate legs at the base without making the whole thing fall apart. Will kept trying to fix my tower for me but got frustrated when I didn't accept his unsolicited help. The next day, Ashley sent me a photo of Will's Eiffel Tower that he made himself from start to finish.

I don't think it is a coincidence that Will was reading regularly from his book about buildings in the days leading up to his Magformer masterpiece. Clearly the knowledge he is gleaning from his books is being retained AND applied.

Playing Pretend - Tonight after I put Felicity to bed, Will met me on the stairs and said we had to go fight "The Black Knight". He led me to our bedroom where Ashley was folding laundry. He told me she was The Black Knight and that she was trying to steal his gold. He was the king, of course, and wanted me to protect his gold. He wasn't a very brave king since he ran away as soon as The Black Knight took a swing at him with her sword, but he was certainly very imaginative. 

Will dressed as a knight / jester at a cub scout activity.

One of his favorite things to do before bed is to read the "Elephant and Piggie" books by Mo Willems. He treats the books like a script and likes to read the lines and act out the part of Piggie, while I read the lines for Gerald the Elephant. He really gets into playing his part and makes the book come alive. I honestly think he has a future in theater.

Memorizing / Remembering - There is a memory game for kids called "I'm going on a camping trip". The idea is that each child in the group takes turns saying what item they would like to take on a camping trip but they must list all the previously mentioned items in the exact order that they were mentioned before adding their own item to the list. I was sitting in Will's sunday school class a month or two ago and the teacher declared that it was time to play the game. The kids (all 4 and 5 year olds) didn't seem to grasp the concept of the game and fumbled along with a lot of help from the teacher. 

Will was last in line and based on his body language, it seemed like he wasn't paying any attention let alone knew how to play the game. However, when his turn came, Will looked up and said "I'm going on a camping trip and I am taking a tent, food, a friend, a bag, a blanket, and a book." He listed each of the previous items perfectly and in the exact order they had been mentioned. He also added a book as the item he wanted to bring (Surprise, surprise!). His teacher excitedly pointed out that not only had Will been paying attention, but he played the game correctly. I smiled and explained "You've discovered his superpower: reciting memorized lists of information."

One thing Will recently memorized is the name, shape, and position of each of the 50 United States on a map. He did this mostly with the help of a US map game on his iPad but also with a puzzle in his room. The closest elementary school to us has a US map painted on the blacktop and it is one of his favorite places to play. Here is a video of me quizzing him on his knowledge.

Following a Plan / Set of Directions / Incentivizing - I talked about this a fair amount in my previous blog post here. Will still does VERY well when it comes to following a predetermined plan and responds well to positive reinforcement and incentives.

Weaknesses

Safety / Self-Care - It used to be that if you were not holding Will's hand at all times, he would bolt and run off on his own and there wasn't anything you could do to stop him. I credit his preschool teachers for helping him make huge positive strides in this area. Will is still a very curious kid and is prone to wander a bit to check things out, but now if you tell him to stop and come back, he will almost always listen and obey. He also stays close when we are outside and seems content to hold our hands and walk with us. We still stay vigilant at home, keeping all the exterior door locked in such a way that he can't get out and he will still make big messes and climb on things when we aren't looking. He definitely has room for improvement but he's made a lot of progress in this area in the last year.

When playing catch with our neighbors, Will prefers to use THREE gloves.

Communication - I want to focus on one major aspect of Will's ability to communicate and that is echolalia. This is the tendency for an individual with ASD to repeat a word or phrase back to someone without seeming to understand its meaning. Often the word or phrase is repeated back with the same inflection that the first person said it with. For example, I might ask "Do you want mac and cheese?" and Will would respond "Want mac and cheese?" It made for very frustrating communication because Will never seemed to have an original thought. 

A year ago, Will's verbal communication was predominantly echolalia combined with the quoting of tv shows, movies, or songs. It seemed like Will never expressed his own original thoughts. Now Will's speech has a much larger percentage of actual original useful information. This was a change that we noticed shortly after Will started preschool and he has steadily improved ever since. Will still has trouble engaging in full conversations but he is hands down better at communicating than he was before. 

There is so much more about Will's communication skills that has improved that I think I'll do a separate blog post on that in the near future.

Social Interaction

This is an area that I think will always be one of Will's struggles but we have seen some great progress from him this year. One thing that has helped greatly since we moved to Oregon has been having Will's cousins nearby. He loves to rough house with his three male cousins and especially chase them around the house. The other day he was building a boat with Duplo Lego blocks and his cousin Jack who is almost 7 started to use pieces that Will wanted. Instead of pushing Jack or grabbing the pieces from him, Will chose instead to use his words and say "Jack I don't want you to use those pieces." That was a HUGE step for Will to be able to express verbally what he wanted a peer to do. Furthermore, Jack listened and they were able to keep playing together peacefully. 

Will (in the foreground) wearing almost the same shirt as his cousin Anthony during the family easter egg hunt

Will also continues to build a loving relationship with his sister Felicity. The laugh and play together but just like any siblings they can get on each other's nerves. Will knows that when he gets fed up with Felicity he can go to his room and play by himself to calm down (or read one of his many reference books). He is also acutely aware of how Felicity is feeling and often tells us when we should give her a bottle or put her to bed when she is hungry or tired. I'm very excited to see how their relationship progresses as they both get older.

Other Weaknesses: Will is still not the most adventurous eater although he does surprise us from time to time, like when he asked for (and actually ate!) a "meat lovers" pizza slice from a restaurant. Milk is still his favorite thing to consume and it has lead to him being tall, muscular, and solid. Will has shown some interest in potty training but still doesn't seem to grasp the concept. He has read entire books about potty training out loud and can probably teach other kids about all the steps that go into it but when it comes to actually doing it, he seems lost.

Overall, we are pleased with the progress Will has made in the last twelve months and there are some exciting new breakthroughs we have witnessed lately. It hasn't all been easy and there is still plenty to work on with Will but we are encouraged by his progress thus far.

Transitions

(Left) Will's first day of preschool (Right) Will's last day of preschool

The first time I took Will to meet his preschool teacher back in September, he was very excited to check out the classroom and play with new toys. We were visiting after school hours and he had the room to himself. Seeing how much fun Will was having, his teacher turned to me and said "What is your transition strategy?" I replied that I didn't understand what she meant.

She explained that for most children on the autism spectrum, it is difficult to move on from one location or activity without some kind of positive incentive. The incentive could be offering a snack, a treat, or pointing out that there is something else fun to do at the next location. Sometimes it is necessary to explain to the child beforehand what the plan is ("First, we go to the park, then we get ice cream") and repeat it several times so that when it is time to go, they understand that is something good waiting for them if they follow directions.

Unfortunately, I did not have a transition strategy that day and Will was NOT happy when I told him we had to leave. After a long negotiation, Will agreed to go home only if he could take some Fisher-Price knights and their castle with him. We sent it back to school with him on his first day and were mildly surprised when he brought it home at the end of the day. Apparently they needed to use the same transition strategy. Eventually he got used to the routine of going to school and coming home and the knights got to stay at school.

There are different ways to help a child with ASD to understand plans and schedules. One of them is called a social story. It uses pictures and words to break a normal routine into easy-to-understand pieces. It is also a good reference if they need to know what happens next. Here is an example that I found on Pinterest that just happens to be about going to the dentist.

Sesame Street recently released a website and app to help educate parents and children about autism. It also had tools to help kids with ASD to learn about navigating daily routines. Here is a link: Sesame Street Daily Routine Cards. Will loves to read these cards on the app and has actually quoted from them while he is engaged in one of the routines.

Sometimes things that were once routine for Will suddenly become difficult and we need to calibrate our approach. Other times, Will surprises us and will happily stop what he is doing when we ask him to and transition to the next activity or location. Life with Will can be unpredictable but for the most part both we and he have gotten better equipped at handling transitions.

Transitions come in all shapes and sizes and our family went through a fairly major one about six months ago when we moved from Virginia to Ashley's hometown in Salem, Oregon. Prior to moving to Oregon, we were able to visit and meet with an administrator in the special education program in the school district about Will and his needs. That meeting allowed us to set up his IEP with his new support team exactly one day after we moved there. All told, he only missed out on a week of preschool and that was partly because of the Thanksgiving holiday.

The immediate transition was fairly smooth because Will was once again excited to be in a new classroom with new toys. He also got to ride on a new bus. Within a few weeks, the novelty of this preschool started to wear off and Will would cry when we put him on the bus in the morning. According to his teachers, he would usually be calm by the time he arrived at school but it didn't make the transition onto the morning bus any easier for him (or us). His crying became worse each morning until some days he screamed as we buckled him into his seat. One day, his morning bus driver surprised him with a coloring book and crayons to play with while he rode to school. She reported that he was a lot happier on the bus.

Unfortunately, Will was a lot less enthusiastic about the coloring book the next morning. After one day, it just didn't interest him anymore. Ashley and I decided we would let Will take one of his favorites books to read on the bus. The bus driver told us that the difference in his demeanor was like night and day. She said he was so busy reading the book that he didn't seem to care that he was having to say goodbye to us in the morning. This was the beginning of a daily routine in which Will got to pick which book he would read on the bus and instead of him dreading the ride to school, he was now excited for his special reading time. In an effort to supply Will newer, interesting books to read, Ashley started making regular trips to the library. Here's a picture of Will wasting no time in starting one of the library books that Ashley just brought home.

Last week Will had his last day of the school year at his preschool here in Oregon. You can see how much he has grown in the photo comparison at the beginning of this post. The ways he has grown emotionally and behaviorally over that same time period are very encouraging.

In a similar vein, I recently put together a video showing Felicity and Will growing up together over the first 12 months of Felicity's life. 

Making the video gave me a chance to review what Will was like a year ago. That in turn lead me to re-read some of my blog posts from this fall and not only encouraged me to write THIS post, but I am hoping to write again soon to explain some ways that Will has grown since his diagnosis.