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.

Monday, August 8, 2016

What is Autism?




I have to admit that even before Will was diagnosed with ASD, I wasn't even completely sure of what Autism is or what signs or symptoms accompany it. Ashley and I have spent a good amount of time the last few weeks learning about ASD and one of the most helpful resources we have found comes from Autism Speaks, which is an Autism advocacy group.

The "100 Day Kit" produced by Autism Speaks helps parents of children diagnosed with ASD to navigate the first 100 days after the diagnosis. I really recommend that anyone who wants to know more about ASD read this document as it touches on many different aspects of ASD, how it is diagnosed, what therapies are commonly used, what family and friends of children on the Autism spectrum can to do help, etc. A link to the kit is here.

Towards the beginning of the "100 Day Kit", there is a very a concise definition of Autism:
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. 
Later, the packet describes how Autism may affect different individuals in very different ways
Symptoms and their severity vary widely across these three core areas. Taken together, they may result in relatively mild challenges for someone on the high functioning end of the autism spectrum. For others, symptoms may be more severe, as when repetitive behaviors and lack of spoken language interfere with everyday life. 
At this point in our journey, we have only received a diagnosis of Will having ASD. None of the professionals involved in evaluating him have even come close to qualifying his level of function and I am certainly not qualified to do so myself. We truly are at the beginning of this journey and I expect that we will continue to learn more about where Will stands as we start to involve more experts in his care. That may include additional diagnoses of behavioral, emotional, and medical conditions we are not yet aware of.

My next few posts will talk a little more about what Will is like, how he fits the diagnosis of ASD, and what some of his strengths and weaknesses are.

In the meantime, enjoy this video of Will riding off into the sunset, dressed as Woody from Toy Story:






Monday, August 1, 2016

A Rainbow Baby and A Child on "The Spectrum"


Life has been very busy for our family since the last time Ashley posted on the blog. I graduated dental school, we moved to Northern Virginia to live with my parents and I have been working as an associate at my father's dental practice. In May of 2016, we welcomed our second daughter, Felicity Jane Stringham. Ever since we lost our sweet Rose Marie, we have anticipated the arrival of a future "rainbow baby" to follow the storm of loss. We miss Rose but are overjoyed at the addition of Felicity to our family. We look forward to sharing more about Felicity on our blog in the future.

Another recent development with our son Will has been a long time coming and is one we would like to start sharing as well. Over the past few months, we have had Will screened by the Child Find program here in Fairfax County. This came about as we came to realize that Will (who turns 4 this month) has been lagging far behind his peers socially, and also through the encouragement of loved ones. Although Will is a very bright child (he started reading before he turned 2) and is generally quite happy, he doesn't seem interested in playing with other kids and it is nearly impossible to have a conversation with him. He also often gets frustrated with others and seems to have a hard time expressing his frustrations verbally.

After completing a questionnaire and an interview over the phone, we had our first in-person screening for Will on May 3rd (which ended up being the day before Felicity was born). Several additional screenings, parent questionnaires, interviews, evaluations, and appointments took place over the next two months. Throughout the process Ashley and I started to get a better idea of what Will's strengths and weaknesses were. We also began to realize on our own that in certain ways he is very different from other kids his age. The team of child psychologists, audiologists, speech and language pathologists, and social workers were all very professional and informative. We had gone into this experience with open minds and grew even more confident that these professionals would be able to tell us what Will needed to help him thrive.

A few weeks ago we sat down with members of Will's evaluation team and they reviewed with us their observations, combined with our own and the results of the questionnaires we had filled out. They listed Will's strengths and weaknesses and the child psychologist explained that based on her observations and all the information, she has diagnosed Will with Autism Spectrum Disorder (ASD).

Ashley and I have both experienced many different emotions since we heard Will's diagnosis, including sadness, relief, anxiety, guilt, loss, and encouragement. I expect that we will continue to experience all these emotions and many more as we continue on our journey as Will's parents. We know from our experience with losing Rose that by sharing what we were going through, it helped us find love and support from many people, including those who had experienced the same thing.

Moving forward, we hope to do the same as we share more about the joys and challenges of raising our beautiful rainbow baby and our smart, funny, caring child on the autism spectrum.


Friday, October 10, 2014

Mother of Two

I've been putting off writing this. I guess because it's painful and makes it all real. But I know it will be cathartic, too, so I need to do this. And I feel like I owe it to all of you who have been following our story, loving and supporting us. I can never adequately express the gratitude we feel. And I hope you forgive me for not personally getting back to each and every one of you. Please know how incredibly grateful I am for the dinners that were brought, the cards sent, care packages received, prayers offered, and kind words spoken.

On Wednesday, September 10, 2014 Matt and I went to my OB appointment. We went right into the exam room after checking in as per the doctor's instructions so that we wouldn't have to sit around those excitedly expecting. She felt it would be less harrowing for us to not be placed in that position and I agreed. I didn't begrudge any of those other expectant mothers with healthy babies, but it was a stinging reminder of what I had lost.

As we were waiting in the exam room, my mind was consumed with fear. I had had some spotting over the previous week and had been cramping since the night before. I had this overwhelming feeling that it was the beginning of the end. An end that would make things "easier," but an end I wasn't prepared for. The nurse came in to get my stats and to use the doppler to find Rose's heartbeat. There is nothing in life that can prepare you for the horror of that non-silent silence. We were then shuffled to ultrasound through the back way. Our OB met us there in that darkened room lit by screens that usually reveal joy and anticipation. After several minutes of probing and searching, they determined that there was definitely no heartbeat. But to me it meant something very different. Rose hadn't been able to fight anymore and had been called Home. We arranged that I would be induced on that Friday. My mom had surprised us earlier in the week by telling us that she had bought a plane ticket to come out to see us and help out. Clearly she was inspired in that decision.

We went home and I finished getting dinner ready. As we were eating I was in excruciating pain. These weren't normal cramps that I had been having: I was in labor. We called the after hours number and they told me to go to the hospital. Then we were in a frenzy trying to get packed and ready to go to the hospital while trying to make plans for making sure Will was being taken care of. Luckily, we have been blessed with many dear friends who dropped everything and came right over.

We went to the hospital and got checked in. We were put in the very same labor room that Will had been born in. Somehow it seemed right being in the same room where we experienced so much joy and hope, almost like a reminder that life continues and we can't know the sweet without the bitter.
















The doctor who was on that night, Dr. Hirata, came in to check on me and to let me know she had spoken with my OB. I was already dilated to 6 cm. but the intense labor pains that I had been having were settling down. Then it became a waiting game. I was hooked up to an IV in case I wanted an epidural (I didn't since the worst of the labor pain was over), got settled in with a book (Scarlet by Marissa Meyer), and later was hooked up with an M&M McFlurry.




















A few hours later I was ready to try and get some sleep. I went to use the restroom and delivered Rose by accident - the sack completely intact. I was pretty hysterical- this was not how I had expected the delivery of my baby to go. I called for Matt, sobbing, to tell him what had happened. He called for the nurses who rushed in and helped get me back to bed before going back into the bathroom and getting Rose carefully out of the toilet. Honestly, I'm horrified and embarrassed to even admit that's how it happened. Looking back, I'm so glad that she was in the sack otherwise I don't know how her fragile body wouldn't have been destroyed. Matt and I sat on the hospital bed together in grief. I had always wanted a September baby. I had just envisioned it somewhat differently.

The nurses brought her out and took her to remove her from the sack and wrap her in a blanket so that we could have some time with her. She was incredibly small and so fragile looking that I was afraid to hold her. Her head looked especially frail, I'm sure that the Triploidy contributed to that. In a way I felt so disconnected from this tiny person that Matt was holding in his hands. This couldn't be my Rose. My mind had always conjured a picture of the most perfect baby to match her perfect spirit. The ease of her delivery, in my mind, testified of her perfect love and compassion - not wanting to make my body hurt like my heart did. So when I saw her, so imperfectly perfect, it was hard for my mind to wrap around the fact that she was who I had been carrying. I'm sure many of you think I'm callous for thinking or feeling this way, but you have to understand that the body that her spirit resided in for a time is not in the perfected form that it will become after Christ comes again and she is resurrected. And knowing that made it hard for me to see how weak the flesh really is and how incomparable it is to the radiance of the unencumbered spirit. In my mind, Rose is the embodiment of beauty and love and all that is good. Maybe that's fanciful, but I don't care because I have meeting her in the flesh to look forward to and I know I won't feel disappointed.

I'm pretty sure the weight was actually 1 lb some odd ounces



















The next morning after tossing and turning all night, our nurses brought in a box full of momentos for us; something that they give to all parents in circumstances like ours.



















Matt also went home to bring our first miracle back to the hospital to see me. And bring me edible food. We were able to make arrangements for a burial (I'll go into that more in a future post). And then I was free to go home.


















It's a very strange thing to come home with empty arms (aside from an overnight bag and a couple of hospital water jugs) after delivering a baby. And to have a body soft from pregnancy and childbirth with no newborn to nestle in that softness. You just walk in the door as if everything should be like it was the last time you came inside only everything has changed. The only physical evidence of the huge difference being the extra pounds from pregnancy which now mock you cruelly. Part of me thought, "I should be able to go on like before because I have nothing to show for what we have been through." Nobody can see the gaping hole in my heart, there's nothing that illustrates the yearning that I feel for a baby to hold and take care of, there's not outward sign that there's a child that I won't get to watch grow, learn, and discover. At least not in this life.

I'm reminded again of the story of Job. As you may recall, at the end of the story all of Job's possessions and wealth were restored to him two-fold. And he had seven more children. Some people may think, "well, if everything else was doubled, why didn't he have fourteen children?" The answer? He did. His first seven children were still his children. Death doesn't change the eternal nature of family. The number of children he had was doubled, the first half were just beyond his reach for a little while.

That night the number of my posterity was doubled. I just have to wait to meet the other half.