Back to School

For those who follow me and Ashley on social media, you are probably familiar with how Will has been attending an autism therapy center for the last few years in lieu of public school. He ended up there during the 2018-2019 school year after his transition from kindergarten to first grade was, to put it lightly, a disaster.

During the previous school year, Will attended kindergarten for only half a day. He also had an aide with him at all times to help him stay on task. You can read a little more about that in my previous blog post: Being Flexible. This arrangement was effective and we considered his kindergarten year to be a success.

As Will began his first week of first grade, we discovered that the school district would not be able to provide a full-time aide for Will but rather an aide would check in on him from time to time and help as needed. It soon became obvious that this arrangement wasn't going to work; Will regularly tried to escape the school and would not remain seated in his classroom. Not only was his ability to learn impacted, but it was a distraction to the teacher and his classmates.

The staff at the school were committed to making things work, but with staffing limitations, they really did not have the numbers they needed to provide adequate help to Will and the other special needs students at the school. Ashley put forth a lot of effort to find a therapy setting that would be effective in helping Will develop the skills he would need to eventually thrive back in public school. That search led Ashley to Adventures with Autism, an ABA therapy center that provides help to children with autism, some in an academic-like setting.

In the three and a half years that Will has been receiving therapy at AWA, we have witnessed tremendous improvements in his behavior and self-regulating ability. Will no longer tries to escape places like home, school, or church. He also follows directions and knows how to regulate his emotions. Alongside these improvements in his behavior, Will has also become more articulate, and social, and expanded his academic capabilities.

This summer, one of the therapists at AWA suggested we start to consider transitioning Will back to public school. We always knew Will would eventually need to return to public school, but we had concerns about how such a transition would go. The failure of his time in first grade was still fresh in our memories.

When Ashley floated the idea to Will, he was very excited and encouraged us to have him make the transition sooner rather than later. Lots of prayer, fasting, e-mails, and a meeting with Will's "team" (including public school and AWA staff) led to Will making the transition back to public school a couple of weeks ago. On his last day at Adventures with Autism, Will had a graduation ceremony.

To say that Will is thriving at school would be an understatement. He LOVES his teacher and his new classroom. We live so close to the school that Ashley walks Will and Felicity to and from school every day. Next week Will starts taking lessons to learn how to place the double bass. He hopes to join the orchestra this year.

This is a very encouraging step forward for Will as he continues his autism journey. We are very thankful for countless family, friends, and professionals who have gotten him to this point.

Will's Baptism

On Sunday, August 30th, 2020, I had the privilege of baptizing my son Will. As members of The Church of Jesus Christ of Latter-Day saints, we believe that baptism is an essential ordinance of salvation and required for entry into the kingdom of heaven. An ancient American prophet named Mormon taught that all those who are accountable should follow the Savior's example and be baptized.

Within the LDS church, eight is considered to be the age of accountability. Mormon taught that children younger than this are innocent and do not require baptism, nor do those who are unable to make decisions for themselves. Ever since Will was diagnosed with autism spectrum disorder in 2016, Ashley and I have wondered about Will's accountability and whether he would need to be baptized.

What we have learned in the past four years is that Will is a loving, tender-hearted boy who enjoys making others happy. He doesn't like it when he finds out he did something wrong and is often quick to apologize when we realizes he has made a bad choice. Will is also very intelligent but often lacks the ability to fully express his thoughts and feelings.

Earlier this year, Ashley and I met with our ecclesiastical leader, Bishop Jacobson, to discuss whether Will needed to be baptized and if so, how we might accommodate Will's needs. In the Church of Jesus Christ of Latter-Day Saints, baptism is by immersion, meaning a person must be fully submerged as part of the ordinance. Will has an extreme fear of water getting in his eyes such that he rarely, if ever, puts his face underwater.

First, after discussing Will's unique situation and personality at length, the bishop explained that he felt like Will was likely not at a point where he could be considered fully accountable for his decisions. However, the bishop saw no downside to Will being baptized if it was something he wanted to do. As we pondered this together, Ashley and I wholeheartedly agreed.

The bishop further explained that there is some flexibility in some of the smaller details of the ordinance that might afford Will some comfort during the baptism. Namely, the bishop suggested that Will could wear goggles to prevent the water from getting in his eyes or a nose plug to keep water from going up his nose. While these items are traditionally not used by most who receive baptism, there are no specific policies or rules that prohibit them.

Shortly after this meeting with the bishop, the COVID-19 pandemic reached the United States and the rest of the world. Soon, we were unable to meet in our regular Sunday meetings and began to hold church services as a family at home. In a way, this was a blessing to be able to work more with Will one-on-one to teach him about baptism and prepare him for the ordinance.

As Will's 8th birthday approached, we became anxious about how Will would be able to actually be fully immersed in the water. The pandemic had made it nearly impossible to enroll Will in formal swimming lessons that might help him. Thankfully, some friends of ours offered the use of the artificial pond they had made in their backyard.

Baptisms are typically performed in a purpose-built font within church buildings. Due to restrictions in the state of Oregon, we would be limited in who could attend the ordinance in person if we chose to use the font. Instead, we decided to have the baptism at the pond where we had been practicing. In a way, this would be even better because Will wouldn't have to practice in one body of water only to encounter a wholly unfamiliar one when the time came for the actual baptism.

Multiple times throughout the summer, Ashley took Will and Felicity to the pond to swim and become familiar with the surroundings. For the most part, Will wore inflatable arm floaties and goggles while swimming in the water. At times, there were other kids swimming in the pool and Will seemed unfazed by their occasional splashing.

When possible, I joined Will in the pool and did what I could to help him overcome his fear of putting his face in the water. This included having him blow bubbles and float on his back. Although I had plenty of experience teaching swimming lessons as a lifeguard during the summer when I was in high school, Will presented an especially difficult challenge.

Several weeks ago, amidst this practicing, Bishop Jacobson visited our home to interview Will prior to the baptism. This is to ensure that anyone desiring to be baptized understands the ordinance and what is expected of them afterwards. Will was able to answer all the bishop's questions about the importance of making good choices, and how the baptism symbolizes the death and resurrection of the Savior. At the end of the interview, Bishop Jacobson said he felt like Will was ready and worthy to be baptized. When he asked if Will was ready, Will said "no" quite emphatically. The bishop smiled and said that whenever Will decided he was ready, he'd be there for the baptism.

After the bishop left, we talked with Will and eventually determined that his fear of his eyes getting wet was the main reason he said he wasn't ready. He agreed to do more practicing before baptism, which had been scheduled for the 30th and my parents were flying out here for. My parents made it clear that they were happy enough to visit even if Will ultimately decided he wasn't ready to be baptized while they were here.

The day before the baptism, I spent an hour in the pond with Will trying to get him to put his face under the water. I tried various different approaches but nothing quite worked. Eventually, Ashley promised him that he would get a new toy if he went underwater. That seemed to do the trick and he worked with renewed focus.

Traditionally, people being baptized are lowered backwards into the water and raised back up in a clear similitude of the death and resurrection of Jesus Christ. As I mentioned earlier, full immersion is the main requirement and the manner in which the person goes under is not as important.

Eventually, I devised a method for getting Will to go under the water that would allow us to override his fight-or-flight response. I had him stand in water nearly to his shoulders and then with one hand on his upper back and another on the top of his head, I forced him straight down underwater and brought him back up again.

Will was ecstatic. He was obviously happy about the new toy that he had just earned, but I could tell her was proud of himself for finally going completely under the water. I breathed a sigh of relief knowing that it was possible to get Will fully under the water. Now I just needed him to be willing to do it again.

On Sunday afternoon, we drove to the pond for the baptism. Will's cousin Anthony who is 8 days older than him was also being baptized. Slowly members of Ashley's family joined us and my parents as well as members from Anthony's dad's side of the family. A few other friends were also on hand. With the venue being outdoors, everyone was able to socially distance themselves while participating.

Will was very excited to get into the water and finish the ordinance. He had requested some Spongebob Squarepants bath toys as a reward for going under the water again. As Will and I changed into white baptismal jumpsuits, I realized that his googles were not in the bag. At the last minute, Ashley drove home to retrieve them and returned before the service started.

After Anthony had been baptized by his father Wes, it was Will's turn. The bottom of the pond consists of a tarp and large smooth river rocks. Will found it uncomfortable to walk on the rocks, so I ended up carrying him into the water, which was VERY cold. After gradually carrying Will further into the water, I put him down in a spot that was deep enough for the baptism. I offered the baptismal prayer and then bent down to let him know that as soon as he was ready, I would push him under the water like we had practiced the day before.

Will started to talk about how cold the water was and how he felt scared. Before I could say anything, he began to sing a song that a character on the cartoon Little Einsteins sings when he gets scared. Although the song was a bit silly, it worked and Will was able to compose himself. We got into position, I took a deep breath, and forcibly pushed him fully underwater.

Everyone in attendance knew about Will having ASD and that being baptized would be a challenge for him. However, the only people who had witnessed us practicing the day before were Ashley and my parents. Most of the crowd looked on in stunned silence until Will came back up out of the water and happily declared, "I did it!" at which point there was an audible sigh of relief followed by laughter, spontaneous claps, and congratulations from the crowd.

Following baptism, the next important ordinance is receiving the Gift of the Holy Ghost by the laying on of hands. I once heard an analogy that explains the relationship between these two ordinances. When a baby is born, two of the first things that the nursing staff does is wash the baby. They then wrap the baby in a blanket to keep it warm.

The ordinance of baptism is not only a symbol of death and resurrection, but also one of rebirth. The immersion in water is similar to the washing of a newborn baby and the Gift of the Holy Ghost is like a protective, warming blanket for the child. The Holy Ghost is often called The Comforter, which is also another word for a type of blanket. The Gift of the Holy Ghost helps those who have received the ordinance of baptism to make good choices. As such, it acts as a protector of sorts.

We went inside and while I helped Will change into dry clothes, I explained that next he would receive the Gift of the Holy Ghost. He gasped and looked up at me and said "I am going to have the best friend in the world inside me!" I don't think I could have said it better myself.

Back outside, after Anthony had received Confirmation (another term used for receiving the Gift of the Holy Ghost), it was Will's turn. I offered the prayer as Bishop Jacobsen, Will's Uncle Wes, my father and Ashley's father joined in placing their hands upon his head. Knowing Will's ability to sit still is limited, I tried to be concise as I completed the ordinance and pronounced a brief blessing upon Will's head. I made a point to tell will that his namesake (William Timothy) comes from my father (William) and my father-in-law (Timothy), both of whom were in the circle. To me, it was a special moment to have three generations of the family present for such an occasion.

Ashley's mother Cindy gave both Anthony and Will their own leather-bound scriptures embossed with their names on the cover. Knowing Will might be overwhelmed seeing hundreds of pages of text in one book, I flipped to the section that had maps and pictures of ancient Israel. Geography and architecture are both passions of Will's so seeing them made him happy and declared, "I am falling in love with this book!" Later that night, he even asked to sleep with the scriptures by his head like a stuffed animal.

I believe in a God who is out literal Heavenly Father who knows the thoughts and intentions of our hearts. Each of us has our own strengths and weaknesses as well as our challenges and limitations. I believe that Will is a truly special son of God and I feel blessed to be his father here on earth. While I may not be able to fully understand how Will's mind operates in this life, I take comfort in knowing that he conquered one of his biggest fears in order to follow the example the Savior Himself set in getting baptized.

13 Wherefore, my beloved brethren, I know that if ye shall follow the Son, with full purpose of heart, acting no hypocrisy and no deception before God, but with real intent, repenting of your sins, witnessing unto the Father that ye are willing to take upon you the name of Christ, by baptism—yea, by following your Lord and your Savior down into the water, according to his word, behold, then shall ye receive the Holy Ghost; yea, then cometh the baptism of fire and of the Holy Ghost; and then can ye speak with the tongue of angels, and shout praises unto the Holy One of Israel. - Book of Mormon, Second Book of Nephi, Chapter 31, Verse 13

A Day in the Life of Will

Saturday February 3, 2018

Salem, OR

5:45 AM: Will wakes up and stomps like an elephant from his room to the living room. This is my cue to wake up and start my day. I change Will's nighttime diaper, give him a bag of Cheez-Its (his favorite food) and a bottle of water with a little bit of Miralax mixed in (He had some constipation problems recently and we've found that giving him a small amount of Miralax at the beginning of the day keeps things moving).

6:26 AM: Felicity is awake so I retrieve her from her crib, change her diaper, and give her some milk. She entertains me while I eat my breakfast by acting out a conversation between Mickey and Minnie Mouse. I have no idea what they are talking about. I'm not sure Felicity does either.

8:15 AM: Will has been playing with various toys for quite some time now but he's really settled into building things with his Duplos. He builds boats, planes, robots, cars, houses, you name it. I honestly think he could play with these all day if we let him.

8:33 AM: Not to be outdone, Felicity has dumped all of her Disney figurines onto the ottoman. Right now her favorite character to play with is Buzz Lightyear. She runs around the room holding him and making "whooshing" noises as he flies.

9:15 AM: One of my goals on Saturday morning is to let Ashley sleep in as late as possible. This means I have to keep the kids in the living room at all costs. Often this requires the use of the iPad and repeated viewings of whatever movie the kids are into this week. Despicable Me 3 is the current favorite. You will notice that Will is now drinking milk from a sippy cup. He earns his milk once he finishes his "magic water" in the morning. He demands that all his milk be warmed in the microwave or he won't drink it. He calls it "hot milk". At this point, I've also fed him a cinnamon roll flavored eggo "waffler" and a strawberry pop tart for breakfast. Those are the ONLY things he is willing to eat for breakfast.

11:31: Lunchtime! Ashley has been up for a while and I've slacked off a bit in taking pictures. Felicity needs to go down for a nap at noon so I've corralled the kids at the table for lunch. If you look closely, Will has successfully removed all the pepperoni from his slice of pizza. Felicity meanwhile is eating a piece of Little Caesar's crazy bread, one of the few things SHE will eat these days.

12:59: During Felicity's nap, Will and I play videos games on my Nintendo 64. Will's favorite thing is to watch me play Super Mario. I've basically finished every level in the game and he still makes me play each world over and over. I let him take the control at this point and he was pretty good considering he's only 5 and a half. It doesn't help that the control is about three times the size of his hands.

2:25PM: Ashley bought will a Lego Sphinx set while at the store. He has been using his Duplos and Mega Blox to build his own version of the Sphinx lately so she thought this would be fun. He LOVED putting it together and even wanted to have the Sphinx with him at bedtime.

3:01PM: Will has been inside all day and is practically bouncing off the walls so I suggest that he and I go to the park together. This is us getting ready to leave.

3:09PM: I've talked about this map before in a previous blog post. Will still enjoys running around on it but I think his fixation on maps has kind of passed. Still, we had fun quizzing each other on which states were which before moving on to the playground.

3:11PM: While climbing on the playground Will declares that we should play "Sneaky Thief vs Detective" and decides that I am the "sneaky thief". He chases me around and then we have a dance fight culminating in him defeating me with his electric guitar. That makes more sense if you've seen Despicable Me 3 since that is how Gru defeats the villain, Balthazar Bratt.

3:20: We recently went to eat at The Olive Garden and when our server came to order the drinks, Will looked up at her and said "I want a pepperoni pizza please." We were very impressed that he knew it was time to place an order, even if he was a little early on the food part. While playing at the playground, he said this table was like a restaurant. I asked him what he wanted to order and he said "I would like a pepperoni pizza and hot milk please". He's becoming a natural at this ordering thing.

4:55PM: After playing for a while at the park, Will is finally starting to get tired so we drive home, get in Ashley's car with her and Felicity and head out for dinner. There is a place nearby called Beehive Station which is basically a food cart pod. There is a parking lot and a covered seating area with several different food carts to get food from. Ashley and I take turns getting out of the car to order food so the kids don't have to get out. Once we get our food, we drive home to eat.

While driving home from Beehive station, the following exchange took place.

Ashley: Will, when we get home I'll make you mac and cheese for dinner.

Will: But I don't like cheese.

Me: You LOVE cheese! Everything you eat has cheese in it.

Will: Huh?

Me: You eat pizza with cheese on it, quesadillas, mac and cheese, and cheez-its have cheese in them.

Ashley: And you know what cheese it made from?

Will: What?

Ashley: Milk! You eat cheese and drink milk almost all day long!

Will: (Laughs) Oh! Okay. I will have mac and cheese at home.

6:09 PM: Will eats the aforementioned Mac and Cheese while reading one of his graphic novels. It's hard to get him to eat unless he is focused on doing something else. Books do the trick except sometimes he reads them out loud which doesn't really allow him to use his mouth for chewing. Still, it's easier than chasing him around the house with the fork trying to get him to eat it.

6:32 PM: Ashley has added a new element to Will's bedtime routine. She has started to read out loud from the illustrated version of the first Harry Potter book. It's hard to tell how much Will is paying attention but he says he enjoys it. Yes, he has an iPad in his lap while she reads but again, it is keeping him occupied and seated on the couch. If Will's brain isn't engaged in doing something he really can't sit still.

7:03 PM: Ashley brushes Will's teeth to get him ready for bed. We've struggled to find a solution to helping him fall and stay asleep at night. We used melatonin for a long time but its effectiveness for him started to wear off. His doctor prescribed a medication for him to help him sleep which has worked fairly well. The problem is that getting him to swallow a pill is asking an awful lot. I end up crushing it into a fine power and working it into the frosting of some mini oreos. So far it has been an effective way to get him the medicine. The downside is that we have to brush his teeth REALLY well before bed since oreos are notorious for sticking into the grooves of the teeth. You can see how much he enjoys it.

7:05PM: I read to Will from his children's bible stories book. We are currently in the Old Testament. He's fully capable of reading these stories himself but he insists on me reading them out loud.

7:07PM: After a bible story and praying together, I let Will choose a book to read for five minutes before I turn out the light. Lately he has been choosing to read this collection of Peanuts comics.

In total, Will and I spent almost 13 hours together on this particular Saturday. I know it's probably his favorite day of the week because we get to do so much together. In a lot of ways, spending time with Will is a lot like it is with other kids his age. However, f you look at the photos you'll easily see that Will didn't interact with anyone outside of his immediate family. Obviously it's easier for him to be comfortable in familiar settings and interact with people he knows well. Still, his teachers and his full-time aide have told us that he continues to make progress in interacting with others. Here are a few examples that they have observed as well as one that Ashley saw:

-While getting off the bus and walking towards the school, Will saw two teachers talking and he called out to them "Hey Ladies!"

-In his classroom, Will approached some kids playing with toy cars and started to ask them questions about what they were doing and joined in with their playing.

-In the waiting room at his therapist's office, Will randomly approached two other kids, introduced himself, and started a conversation with them.

It's very promising to see how much progress Will has made in the 18 months since his diagnosis with ASD. It will continue to be something we need to adapt and it does affect our daily routine on a regular basis, but as long as he is continuing to learn and grow and we learning new ways to help him fulfill his potential, each day is better than the last.

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.