Tuesday, July 25, 2017

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.


Thursday, July 6, 2017

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.

Thursday, June 22, 2017

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.

Saturday, December 3, 2016

William the Wise

Several weeks ago, Will's Sunday school class made royal crowns with the words "I can be an example" on them. I took this picture of him in the gymnasium of the church where he declared that he was "King Will". He loved wearing it so much that he asked to wear it to church the following Sunday, and we obliged. A few nights later, when I went in his room to check on him, I found that he had fallen asleep while wearing the crown.

I've been wondering what sort of nickname King Will would have. I searched wikipedia and found what I think is a perfect match: "William the Wise". The real-life William the Wise was known for his love of astronomy, a subject that Will definitely has a passion for. Here is Will listing off the planets in our solar system from memory:


Being able to recite things from memory is Will's true talent. A few months ago, Will had a speaking part in the children's program at church. His line was "the scriptures tell us to be baptized." We helped him practice the line over and over at home and even printed it on a piece of paper that he could read if he forgot. Will had no problem reciting the line for us in the comfort of home, but we wondered how he would do at the pulpit in front of around 200 people.

When Will's class got up to recite their parts, he was at the end of the line. The kids before him all did a good job but, some were a little nervous. One child froze in terror as he started to deliver his line and had to be helped back to his seat. Several kids clearly knew their parts but the pressure of being in front of everyone caused them to ask their teacher to prompt them.

Will's turn came and he confidently walked right up to the microphone. Even though he didn't need to read from the paper we printed for him, he still carried it up and put it on the podium. Then, with a smile on his face, he looked out at the crowd and said his line perfectly. It was probably my proudest moment as a parent.

A few weeks later, Ashley and I were putting Will to bed and he said he wanted to read a story. We asked which story, and he said he wanted "The Very Hungry Caterpillar". This is a book that he reads all the time at his Grandparents' house in Oregon but not one that we had at our house. Before we could tell him that we didn't have the book, he launched into reciting the entire story from memory. I was able to get my phone out to capture the moment: (NOTE: It's a really long video)


What's interesting to me is that Will not just spouting off the lines - he adds in pauses and changes his inflections here and there. He has since made his recitations more and more elaborate. Sometimes he will walk to the light switch to turn the lights on and off to signify the change from day to night. Sometimes he uses stuffed animals for props. In short, he's not just repeating things he has memorized but turning them into a performance.

Here's a video of me asking him to read some names on the wall in a room in my parents' house that they call "The Granddaughter Room". My mom paints letters to spell out the name of each of her granddaughters and Will has learned to read them all. I took this video while I quizzed him on what the letters are and what they spell. Will gets into it the more we go on and you can see how proud he is of himself for being able to read.


In conclusion, our William the Wise has a flair for performing, a love of science, and reading skills. I'll leave you with a short clip of a few other skills that Will has demonstrated: playing the piano, exercising on an elliptical, and giving his baby sister a tour of the house in her high chair.

King Will is a true renaissance man.






Friday, September 23, 2016

"Press Cool" AKA Preschool

It's been over a month since my last blog post about Will and quite a lot has happened in that time. Back in August, we had Will's IEP meeting. IEP stands for "Individualized Education Program" and for any child with special needs, it serves as almost a road map to guide them, their teachers, parents and other professional on how to help the child to set and achieve his or her goals. During the meeting, we reviewed Will's strengths and weaknesses and worked with a special ed teacher to set goals for Will. We feel very good about the goals as they will help push Will towards being better at listening to directions, interacting with others, and taking care of himself.

The county provides different levels of services for kids on the autism spectrum and the services that we all agreed were the most appropriate for Will were afternoon preschool five times a week. After a bit of a mixup regarding what school Will would attend, we finally got things straightened out and he had his first day of school last week. Here is the obligatory "first day of school" photo as well as a few photos of Will in the classroom on his first day.




Will is in a class with other kids with special needs. These can include developmental delays, speech issues, behavioral problems and autism. We don't know much about the other students but right now there are five total kids in the class. In October, they will be adding one "typically developing" child to the class. The purpose is to give the kids at least one child to interact with that doesn't themselves have any special needs. In a very strange but welcome coincidence, the child that is being added to Will's class is actually the daughter of some of our friends. She and Will have played together multiple times and I think it will be nice for both of them to have a familiar face in class.

For the first week of school, the bus routes were still being figured out so we had to drop Will off at his school and pick him up afterwards which was a little inconvenient since the school he is assigned is not the closest to our house. Thankfully, by the end of the week he was able to start riding this bus home and starting this week, he rides the bus both to and from school. Here's a video of him getting picked up at our house of the first time:




Will wears his backpack to and from school and his teachers help him eat his lunch while he is there. They send home a report every day detailing things they did, how Will performed certain tasks during the day and any suggestions or requests the teachers have. Every morning we send a report back that talks about what Will did at home after school, what he eat, what he played with, etc. Sometimes we even have to help him with homework. Here's a picture of Ashley helping Will with his "About Me" poster.



Will loves going to preschool and still gets excited about the bus every time he gets to ride it. We've also noticed some small but encouraging changes in his demeanor and his willingness to listen to things we ask him to do. He's also even started to answer past-tense questions. One day my mom asked him "How was preschool today?" and he responded by saying "It was fun!"

Right now, one of my favorite parts of Will attending preschool is the way he insists on saying "press cool" and I think it's because when he reads the word "preschool" he only sees one letter E and therefore concludes that it should be pronounced almost with a French accent. I think in his mind, everyone else around him is saying it incorrectly when they say "pree school". He'll figure it out in time but right now it's just another one of the things that makes him so quirky.

Monday, August 15, 2016

Getting to Know Will Part 2: Weaknesses





I believe every child has strengths and weaknesses and it is the job of the parents to help utilize those strengths to make the child the best they can be. There are a lot of positives that we see in Will that give us hope that with the right kind of help, he'll really be able to thrive. At the same time, Will's weaknesses not only tend to make every day life difficult for both us and him, they also make a lot of sense given his diagnosis of ASD.

Once again, I'll add my disclaimer that what I'm sharing is mostly my own opinions and observations as a parent and that while I feel like I know Will very well, my knowledge of ASD is still quite limited. Information I have received from professionals, other parents of children on the Autism spectrum, as well as family and friends and my own research have helped me pick up on a few more traits and behaviors in Will that make his ASD diagnosis even more apparent.


Weaknesses


Safety / Self Care


Will seems to have no concept of danger or that it if possible for him to be hurt or injured. If we are in a parking lot, the sidewalk along a busy street, or even someplace indoors like a shopping mall, he will take off running if one of us is not firmly holding his hand or his arm. It doesn't matter how many times we tell him he needs to stay close to us or how much we try to explain what might happen if he runs away. If he sees an opportunity for freedom, he will take it.

Even if Will is seemingly contained indoors he can still manage to escape. We live with my parents and their house is on a dead-end street. It would say it is about half a mile from their driveway to the intersection at the end of the street, which is quite busy. Once, when all four of us adults were home, Will somehow managed to escape through the garage and by the time Ashley and my mom realized he was gone, he was already well on his way to the intersection.

When they found Will just before he reached the dangerous intersection, he wasn't scared or even the least bit worried. He was smiling and acted as if a three year-old walking down the road alone a half mile from home was the most normal thing in the world. We now have those door-handle covers to prevent him from opening the door to the garage and we make sure all other doors are dead bolted with the key out of reach so that he can't get away.

I mentioned before how Will likes to build things and for the most part, it's quite impressive and shows how creative he is. The other side of it is that he can figure out how to climb on furniture or stack chairs and stools on top of each other to reach high places. If you turn your back for a minute, he will quickly scramble on top of bookcases, countertops and dressers. When you chastise him for being naughty and pointing out how dangerous it is to climb on things, he will just laugh at end up trying again later.

It's stressful knowing that your child is capable of putting himself in a position to get hurt but that he has no inherent fear of injury or danger and it impacts our lives greatly. Taking Will to new setting or a public place is stressful because we have to be especially on top of him to keep him out of harm's way.

Communication


I would definitely describe Will's communication level as being "verbal" as opposed to "nonverbal". He was evaluated by a speech and language pathologist who helped demonstrate to us that he can fully understand the things being said to him and is capable of putting together sentences that are at the level one would expect for a child his age. However, his spoken communication is not practical or pragmatic. In other words, although Will is capable of understanding the words people say to him, and he has the ability to respond verbally, much of what he does say either doesn't fit the context or the responses he gives aren't useful. Let me provide some examples.

Will generally doesn't do well with questions that start with the words "why" "how" or "when".  In fact, if you use those in a question, he just won't respond. You can ask things like "who is that" or "what are you doing" and he'll answer correctly pretty much every time but the other question words seem a mystery to him. Likewise, despite having an excellent memory, Will won't answer questions about things that happened in the past. It doesn't matter if it was last week, yesterday, or an hour ago. If it's not happening right now, Will doesn't seem willing to talk about it.

Along the same lines, Will doesn't verbally express "like" and "dislike". He also has never used the word "favorite" correctly. Most kids his age seem eager to tell anyone who will listen what their favorite color, food, song, and toy is. I can tell you what Will's favorites probably are in these categories but not because he's told me.

A lot of the time when Will doesn't know how to respond to something we've said or a question we've asked, he will fall back on repeating a line from a book or tv show. This comes back to one of his strengths, which is that he is good at memorizing and repeating certain words or phrases. Sometimes when we are trying to communicate with him, the ONLY thing he will say is stuff he's heard from tv shows or movies. It's frustrating because while the words that he says may be clear enough that you can discern the content of what he is saying, it has no meaning within the context he is saying it in. Here's an example:


I think I just asked Will what he was doing with his sticks. In response, he says "Oggy and the Cockroaches dot com" which seems to be a reference to a random french cartoon he found on Netflix months ago about a cat named Oggy who is tormented by three cockroaches that live in his house. SIDE NOTE: the show is a poor knock-off of Tom and Jerry and not worth checking out. At no point is the website for the show ever mentioned but Will still somehow decided to take the title of the show and add "dot com" at the end. It makes no sense, has nothing to do with what I was saying to him, but Will just kind of does his own thing sometimes.

The last bit about communicating with Will has to do with him repeating back things that we say to him. For example, we might say "Will, do you want to eat mac and cheese or peanut butter and jelly?" and he will respond by saying "Want mac and cheese or peanut butter and jelly?" This is something we have learned is VERY common in children with ASD and it is called echolalia. Often when he is repeating phrases back to you, he does it in this weird monotone voice. As a result, he sounds kind of robotic. In fact, I've joked with Ashley that in those situations Will seems like a robot that was programmed to act like a child but the robot is really bad at actually pulling it off. 

If you are my age or older, you might remember a 1980s sitcom called "Small Wonder" in which an inventor creates a robot who pretends to be his daughter. Somehow despite the robot clearly talking and moving like a robot, no one outside the family is able to figure out that she's not a real little girl. Here, a boy tries to talk to her and she responds the same way Will might in a similar situation.




Obviously this is an exaggeration and unlike the robot girl on the show, Will doesn't ALWAYS talk in a monotone voice. As I said earlier, it's usually when he is just repeating phrases back to you. Still, if you spend enough time around Will you'll notice that the way he says things and the mannerisms he exhibits are pretty strange.

I shared a video last time of him reading a book. He was reading slowly but I feel like he enunciated clearly. Below is a video I took a few nights ago of him narrating a picture book that has very little words in it. He was excited and kind of laughing but the way he described what he was saying was hard to make out and he's speaking in kind of in a singsongy voice.




When Will is fluctuating between a repetitive monotone and a high-pitched sing song voice, it can be difficult trying to have any kind of meaningful verbal exchange with him. Even asking what he wants for dinner can take several minutes since he tends to either just repeat the question back to us or says something completely unrelated. Having a conversation with Will is basically impossible. He seems to have no desire to keep a steady exchange going with another person which deeply affects our next section....

Social Interaction


Obviously if Will is unwilling or unable to have a conversation with another person, social interaction is going to be difficult. He usually is content to play by himself with his toys. The only activity he really seems to enjoy doing with other kids is playing chase, which requires very little verbal communication and a lot of running (one of Will's favorite things to do even though he's never told me as much since he doesn't use the word "favorite").

If anyone says or does something that Will doesn't like, he usually just shouts "no" or "stop it". If other kids crowd his personal space or try to take one of his toys, he escalates pretty quickly from a forceful "no" to a shove or a hit. Will doesn't seem to have the patience or capacity to explain to anyone what his boundaries are and will instead push, hit, or scream, to keep others away.

Lately I have been trying to secretly make videos of Will to try and capture what he is like on a daily basis. Here's a video of his reaction when he realizes I am once again filming him.


Will sometimes reacts the same way if another kid even looks at him, let alone tries to engage him in conversation. I think Will knows that if someone can't pick up on his verbal attempts to keep them away, he resorts to hitting or pushing. It doesn't happen often but he does the same thing with adults. During one of his sessions with the child psychologist, she was trying to engage him in a particular game. He wasn't interested at all and took a swing at her. I think she must be a trained in some kind of martial arts because she blocked his swing with cat-like reflexes. That or a child psychologist is used to having kids react physically when they are pushed out of their comfort zone.

Clearly Will has very little desire to engage other kids in playing or in conversation and it's going to keep being a problem in any kind of social setting moving forward.

This next video isn't necessarily a conversation, but he has started to show more interest in his baby sister and it's a sweet moment that Ashley captured the other day:



Food


Here is a pretty exhaustive list of what Will is willing to eat / drink: milk (lots of it), pizza, cheez-its, Lucky Charms, one particular type of Granola bar, soft pretzels, macaroni and cheese, grilled cheese, quesadillas, peanut butter and jelly, Eggo waffles, and goldfish. He also likes M&Ms, Oreos, and Kit Kats.

A few things that Will absolutely will NOT eat include: fruit (unless it is pineapple on a Hawaiian pizza), meat (unless it is Canadian bacon on a Hawaiian pizza) and vegetables.

Fortunately for us, Will has never had any trouble meeting any of his growth milestones. If you ever have a chance to pick Will up, you'll also know that he is very solid and well-built. Milk is a huge part of his diet and probably his favorite thing to eat. At one point he tended to eat only white colored foods like milk, yogurt, and string cheese. He's a little less picky about the color of the food but we think texture probably plays a big part of his pickiness.

Right now, Will's pickiness while eating isn't a huge problem but it could potentially be one in the future.  He can't eat only dairy and carbs forever! It certainly adds to our stress at mealtimes because there are only so many things we know he will eat and sometimes he's either not hungry or just won't tell us what he will actually eat.



In summary, I think a lot of the weaknesses I've listed are very clearly in line his diagnosis of ASD. These are also things that hold Will back as far as being able to have meaningful interactions both with other kids and adults as well.

Thursday, August 11, 2016

Getting to Know Will Part 1: Strengths



I feel like most of the people who read our blog regularly have probably met Will at some point. Some may even see him on a regular basis. Others maybe haven't seen him for a while or may not have a chance to meet him in the foreseeable future. I think it's reasonable to provide something of a snapshot of where Will is right now as a reference.

Before I start, I want to point out that most of what I'm sharing is just my own personal observations and opinions of Will. As I've already mentioned in previous posts, we've had him evaluated by professionals and they have given us quite a bit of information about him and the Autism spectrum but Ashley and I are still basically novices when it comes to ASD and child psychology. Instead, I'm going to focus on Will's strengths and weaknesses and how they affect us on a daily basis.

Strengths


Reading


Will became fascinated with numbers and letters at a young age. From what we can recall, he knew all the letters and numbers 1-20 by about 18 months and by 2 years he was reading most 3-4 letter words. He developed these reading skills largely on his own (and using the "Endless Reader" app on my iPad). Now he reads words anywhere he finds them. He'll call out words when we are at the store whether they are on signs or displays. He can even work his way through challenging words he's never read before by sounding them out.

For reference, here is a video of Will reading himself the book "A Birthday for Cow" by Jan Thomas. This was recording in March of this year, so will was a little over three and a half.


Hands down, reading is Will's biggest strength and it's not just a parlor trick. When I was his age, I remember pretending for my mom that I could read a sign for a carpet store. She was so impressed that I could read the word "carpet" when in fact I just recognized the logo from a tv commercial and knew the name had "carpet" in it.

Will, on the other hand, actually recognizes the letters, puts them together, sounds out the words, and comprehends what he reads. I have heard that some children on the Autism spectrum can exhibit early reading ability, which is termed "hyperlexia". Will has not been formally diagnosed as hyperlexic but I wouldn't be surprised if he was at some point in the near future.

Building Things


Will loves blocks of all shapes and sizes. He also likes rearranging couch cushions and other furniture. Often he will put something together and tell us what he was trying to make. Once he stacked pillows in his crib and said it was the eiffel tower. Another time he told us that his styrofoam tub blocks were an opera house. Here's picture showing his opera house and the one in a book he regularly reads.



He's also really good at stacking furniture to access hard-to-reach places. Once, while we weren't looking, he stacked some chairs and boxes in our closet to reach some play-doh that we had told him was off limits. He was successful in his efforts and we only learned about his makeshift ladder by finding the remnants of it in our closet later.

Playing Pretend / Make Believe


Will loves to dress up in various costumes. We recently bought him several themed pajama sets because he loves to pretend that he is different characters. His favorite right now is Buzz Lightyear but he also likes wearing his Captain America costume. He's also regularly asking us to participate in make believe with him. His action figures have conversations with each other, his building blocks are actual cities, and the beanie babies he calls his "animal friends" have names and travel around the house with him. Just the other day we had a lightsaber battle in the backyard using sticks. He rotated from being Han Solo to Darth Vader and finally Luke Skywalker.

He also knows the difference between make believe and real life. A friend from church was over one night and saw Will wearing his Woody pajamas and jokingly asked if Will was Buzz Lightyear. Will said "no" to which our friend responded "oh, you're Woody". Will looked at him with a straight face and said "I'm not Woody. I'm Will."

Memorizing / Remembering

Will is exceptionally good at memorizing and repeating words and phrases that he's heard. His favorite thing to do is quote from movies and tv shows and sometimes if we don't recognize what he's saying we aren't sure if it is something he has made up on his own or if he really heard it somewhere. Months ago, he went around the house saying 'We've got to find that lady" over and over. It was actually a little creepy, as if there was some ghost woman in our house that only he could see. We were relieved to finally discover that it was dialogue from the Garfield cartoon that he had been watching on Netflix.

Sometimes the things Will repeats are things that we've said, songs that he's heard, or words from a book that he's read. What's surprising is that he often seems like he isn't listening or paying attention but later he will say and repeat a snippet of a conversation or song that shows he was actually listening. This happens frequently at church when it seems like he isn't even remotely interested in what is going on but days later he will be singing the words to one of the hymns we sang.

The flipside of Will's memory is that he often is only repeating words and phrases that he's heard that it makes it harder to communicate with others. I'll touch on that more when I discuss some of his weaknesses.

Recognizing Emotions in Others (and himself)


Will can tell if someone is happy, sad, angry, or excited. There have been several times in which he has seen me crying and stopped what he was doing to give me a hug. This past Sunday, one of the speakers became emotional and started to choke back tears. Will turned to me and said "He's sad". Likewise, he knows when we are happy or please with him. He likes to be praised.

Will also verbally and nonverbally informs us when he is happy, sad, or otherwise upset. Recently we were at the beach and I got him situated in the bathtub in the beach house where we were staying. I let him in the bath to go get his towel and I guess I took too long for his liking because by the time I returned, his 13 year old cousin was trying to comfort him. Will took one look at me and sobbed "Dada, I'm afraid!" I burst into tears after realizing that leaving him in an unfamiliar room for even a short time made him uncomfortable enough that it scared him. At the same time, I was impressed that he articulated very well the specific emotion he was feeling.

As I mentioned before, Will can recognize emotions in himself and others and sometimes knows how to respond appropriately. Unfortunately, we have learned that Will does NOT respond to angry parents like some kids do. Instead of being shocked into stopping naughty behavior when he sees we are angry, he usually laughs and continues what he's doing. That is definitely an area that we are hopeful that we can improve with Will but the fact remains that he KNOWS we are mad. He just responds the wrong way.

Following a Plan / Set of Directions / Incentivizing


This is a more recent trait we've recognized in Will and as parents we've started to use it a lot to motivate Will. One day when Will was at a screening appointment, the child psychologist asked him to explain what he thought was happening on the page of a children's picture book. Will seemed confused at the fact that the book had no words and rather than play along with her request, he threw the book across the room and said he wanted to leave. The psychologist responded by telling Will that if he finished telling her about the picture in the book, he could play with bubbles. Will eagerly picked up the book, sat back down and somewhat finished the task. It was enough for him to rewarded with the bubbles.

Afterwards, the child psychologist told me that it was a pretty big deal that Will could be "redirected" from one activity to another with "if / then" statements and incentives. We have since learned that if we thoroughly explain to Will what we want him to do or what our plans are, he is much more likely to go along with what we say. Furthermore, we know the toys and food items that we can use as an incentive to get him to do things. It's not a foolproof system and sometimes Will resists us no matter what we do, but the fact is that Will can be very obedient when he knows what to expect.


Okay, we'll take a break here so Will can finish eating his mac and cheese. Next time I'll talk more about some of the areas where we hope with the proper help we can see some improvement.