About A Duke

With all the hoopla that is currently surrounding Will, I’ve realized that I have completely neglected documenting Duke’s milestones for the past few months. Even though Duke is completely un-forgettable, he’s just so simple and easy to please that he often gets overlooked because his happiness is just so easy to maintain.

But even with his mellow attitude, during the trials of the last few months our little Duke knew something was awry. He had streaks of anger and started hitting out of frustration, which I think was him modeling Will’s behavior and his natural reaction to being part of a family that was currently in distress. But thankfully since things have slowed down in the last few weeks, Duke has returned to his normal old self.

Since Will has gone back to school, I have completely fallen in love with Duke all over again during the 9 hours a week that we get to spend together uninterrupted. This is really the first time I’d had Duke all to myself. The week Will started school the first time, I started being a nanny for a baby girl and while it was so fun to see Duke have a “best friend” come to play every day, I sure love just having him all to myself. When my mom calls to check in on everyone, she always asks, “What’s Duke doing that’s new?” to which I usually reply, “Um…I’m not really sure. He just keeps smiling, eating, and pooping his way through life.” This is such a true statement.

Here are some of the funny things Duke is currently doing.
- He really does still poop A LOT. Like at least three times a day. Since this is such a common occurrence, he has learned to announce his bowel movements by coming over to me and meekly saying, “pooooooof”.
- He is becoming very social and if we happen to be anywhere besides home, when we leave he always bids farewell with a wave and a “Bye! Thank you!”
- He goes to sleep around 7 and wakes up around 7. A few times a week he will wake up in the middle of the night and we just grab him some milk and lay down in bed next to him, where he quickly curls up like a stink bug (he still sleeps like this all the time) and burrows into our body and falls asleep instantly. It’s hardly an inconvenience and truth be told, I cherish these moments after I swear silently that I have to leave my warm bed momentarily.
- Will usually wakes up around 8, so Duke I get to have some alone-time most mornings. I have started recording Ace of Cakes on The Food Network and Duke loves watching it! If I say, “Duke, do you want to watch the cake show?” he gets a huge smile and runs over to the recliner where he sits on my lap under a blanket and we watch the show.
- He’s still a champ eater. He definitely has “hungry” days where he seems to eat his weight and other days where he just eats normal. Some of his favorite foods are blueberries (or “boo” as Duke says), cheese, black beans (he would eat a whole can if I let him, but this always makes for a horrible diaper the following day), pasta, and apples (he loves holding a whole apple, carrying it around, and munching on it).
- I was worried Duke would be our “leech” child, as he seemed to have a hard time separating from us if Will wasn’t around. But he has done wonderful in nursery without Will there! As long as he doesn’t see us leave, he’s golden.
- If there is music on, Duke is always dancing. His most famous dance move is where he tries to jump, but he can’t make it off the ground. It’s down-right hilarious.
- He (IMO) looks exactly like Cort, just with my hair. His facial shape and eyes and smile are identical to Cort’s. And I think Will is looking more like me every day.
- Duke has made a new friend here- Liam. Liam is just 4 days older than Duke and when I tell Duke that we are going to Liam’s house to play, he smiles and runs to get his shoes. Liam’s mommy, Alia, has been a wonderful asset and confidant in the last month. So thankful we were connected by my neighbor, Ellen.
- He’s a pro at being in pictures. We get out anything that even remotely resembles a camera and he instantly says, “cheeeeeeze cheeeeeeze”.
- He pretends to go potty all the time. He frequently stands at the toilet and tries to take off his diaper. The top of the toilet bowl hits him at about his belly button. If only he could really pee when he was on the toilet…
- He loves saying prayers. And he prays every night after Will prays. We do the whole everyone-wants-to-say-a-prayer-so-everyone-gets-to-pray thing.
- When he’s hungry, he climbs into his high chair. His way of saying, “Hey, I’m hungry, so I made myself ready for you to give me food.”
- When we’re in the car and I park, is always says, “Oh Gaaaaayyyyy!” (aka OK!)
- He still has a lot of chub, which I love. Or, a lot of chub in comparison to Will. He has a healthy fat roll behind his knees and I have to shimmy on all of his pants over his saddlebags. And his size 7 chubby feet are equally adorable.
- He loves reading stories and whenever he finds a book, he runs over smiling to sit on your lap to have you read it. He especially loves the David books.
Duke really is a treasure. That kid turns heads daily with his stunning good looks and his charm is down-right over the top. We’re so lucky to have him.

He has been such a calming influence for me these last few months (even though he has definitely had some pretty awful days as well). I still call him “baby”, even though he’s really not a baby at all, but referring to him as a baby makes me feel like maybe he’ll stay small and innocent forever.

It’s worth a shot, right?

My Quirky Kid-Update

Will has good days and bad days. A bad day would be like last Sunday when by the time we made it to church, all four of us were either screaming or crying. Or, like Wednesday night last week when at 9:30 pm and the kids were finally all asleep, Cortney and I realized we had failed to eat dinner and not wanting to eat fried eggs again (we’ve been averaging that meal about twice a week for the last six weeks), we put in an order for Thai food and ate dinner at 10 o’clock at night. We looked (and felt) like we had just lost a 10 round boxing match.

Although I’d love to blame the “bad” days on APD, I’m sure a majority of the time Will is just being a normal active three year-old boy, but I tell myself he’ll calm down after he starts therapy because it makes me feel better. Releases some of the control into the unknown, and gives me hope that I will feel like we have everything under way in the near future. He’s been so incredibly defiant lately. I just feel like I can’t get him to do anything, and instead he just does the opposite.

I’ve had a lot of medical professionals lately ask me how Will’s speech delay effects him. Does he have a hard time making friends? Is he social, at all? Is he shy because of his speech delay? Does he understand that he can’t speak well? Does he play well with others?

As I have spent time contemplating these questions, I can’t help but feel an incredibly sense of irony in this whole thing. Will can hardly talk, yet is the most social kid I’ve ever known. His speech delay in no way inhibits him from making friends. Will makes friends SO easily, and he’s so proactive about it. I always tell Will that’s he’s going to be the most amazing missionary because he already loves everyone he meets and wants to be their friend. Within the first day of school (at the 2nd preschool) every student knew his name and when he left, he waved goodbye like he owned the place, to which all the kids responded “Bye Will! See you tomorrow! Let’s play again! Have a good day!” and all kinds of other well wishes. He is the big man on campus wherever he goes.

A few months ago, every kid could mostly understand what Will was saying (way more than I could understand, anyway) and I loved the “kid language” that seemed to exist where all kids four and under could understand what every other toddler was saying. But now, I’m starting to see other kids look really confused when Will talks. And I cant help but wonder how long it will be before Will’s speech delay affects the kinds of relationships he can make.

Possibly the worst byproduct of this scenario is Will retreating from his smiling outgoing personality to that of a shy, low confidence kid who is sad and frustrated because he can’t talk like other kids.

And truthfully, that is my biggest fear in all of this.

Will has this incredible ability to connect with any person, any age, and any station in life. A person is a person, as far as he’s concerned. With no fear, he talks to everyone, greets them kindly and honestly, in his mind, I think he sees the whole world as a sea of friends and potential friends.

But I also have faith that we are catching this early enough that within a few years, I really don’t think he’ll have much of a lag at all.

As frustrating as he (and this whole situation can be), I’m constantly in awe of my kids. Will has been so incredibly adaptable thus far in his life, that it took a monumental move to shake things up enough for us to even be tipped off that something wasn’t right. And to think that he has spent his whole life not understanding half of what we were saying, but he was still an incredibly “normal” kid, truly speaks of his intelligence. He is a really smart kid and has no doubt had to learn how to think on his feet quickly. Maybe this is why Will is so talented with his hand-eye coordination—when his ears and mind couldn’t understand something, he used his hands to figure it out. But possibly the best explanation is that Heavenly Father gives us strengths to help us where we are weak.

This week is a big one. Will has a hearing test on Wednesday (through the school district), and a private speech evaluation with Miss Kathryn on Friday. I’ve decided not to give Will Coke for breakfast on Wednesday, because I’m positive Will does not have a hearing problem and I want them to have every reason to agree with that. After this we won’t have anything until the speech assessment with the school district on the 27th of February.

The last two weeks seem to have been so busy, I hardly have enough time to do anything (explanation for fried eggs for dinner twice a week). One day I was getting really frustrated with myself as to why I could not keep my house clean, or even just get the laundry done. It seemed like no matter what I did, there was just no way on earth I could ever get the clothes folded and put away without laying in huge piles in the family room for a week. In my mind I ran through each day and tried to look at times that maybe I was being lazy and could have folded laundry, only to find that there was no wasted time. Just no time. I feel like all day I’m in the car taking Will from point A to point B, or at home trying to direct him from activity A to activity B.

We’re making more friends little by little and that is wonderful. Alia invited us to a play date with some old friends of hers, and the moment I walked in the door I thought, “these are my kind of ladies!” I’m really excited to get to know them better. And yesterday in church, I sat on the couch in the foyer and talked to a woman during all of Sunday School and Relief Society and it felt so good to talk someone for long enough that I knew I would remember their name when I saw them again:)

I just read over this post and it sounds so Debbie Downer. I promise, I’m not as depressed as I sound! Cortney and I both feel good about being here and things are really looking up! My aunt sent me a fridge magnet that says, “The future is a bright as your faith” and I think about that all the time. I hope my faith matches the magnitude of the bright future I have in my mind for Will.

I was texting my friend, Christy (speech therapist), the other day and Christy happens to come from probably the best family I know- the Frosts. The Frost family is one of those rare families that “gets it”. They are so genuine and funny and they do the right things for the right reasons. Some of the best parenting advice we have ever received has come from the Pam Frost, matriarch of the family. Christy’s brother, Jacob, lost most of his hearing due to meningitis as a toddler and for the rest of his upbringing, Pam (mom) sat at the table with Jacob, and taught him how to talk in spite of his hearing handicap.

I was expressing my frustration with Christy about our initial assessment with the school district and my desire for Will to be accepted to a Special Ed preschool, but fearing that he wasn’t “handicapped” enough to be let in. She joked that I should call Pam and have her bully the school district into letting Will in. Pam is about the nicest person on the planet, but when it comes to her kids, I could see her making herself known, in every possible way. I laughed and said that in her heyday with Jacob, I’m sure Pam was a force to be reckoned with. Christy said, “Oh, she was a legend.”

So my mantra for being Will’s advocate has become: Be a legend. It makes me smile and laugh and feel feisty all at the same time, just thinking about it.

We also made the decision to pull Will out of his current preschool. He was able to get into a preschool that was much closer to home, it was the same price as his last preschool, and they seem to be much more equipped to help Will. His current preschool teacher is very sweet, but has such a strong accent, I can barely understand her, so I don’t think Will would have any chance of progressing in speech there. Let’s hope another major change won’t completely derail this kid.

Gratitudes to: Emily for taking the time to research APD and then buying a book about it and shipping it to me. Alia for always being so happy to watch Duke during all of Will’s appointments and being so excited for Liam to have someone to play with. Casey for watching Duke on Friday during Will’s speech assessment, and letting me crash at your house while Will is at school. Harrison James for being my resident babysitter across the street and always coming over with a smile on your face when I need to run an errand and the kids are asleep. Sue for getting the boys new Adidas shoes—baby Superstars are so cute I am giddy when I look at them.

My Quirky Kid--The Initial Screening

Before I give the rundown of our assessment yesterday, I want to mention a few things.

1) Thank you thank you thank you to everyone for your love/support/concern/prayers/fasting in our behalf. The initial response to our last post was overwhelming and I can’t even put a number on how many texts, calls, emails, Facebook messages, etc I received expressing love to our family.

Will is a really easy kid to want to rally around. He’s pretty much the coolest kid around and if there were a smile contest between him and Magic Johnson, Will would win in a landslide.

But that aside, I want everyone to know that I can feel your prayers. I used to question people that said that, but I can honestly say there have been more than a few times when I have contemplated our situation and then remember that there are literally hundreds of people praying for our son, and our family, and it really is humbling. Thank you.

2) I feel like I was prepared for this struggle a long time ago. In my iPhone contacts I have three social workers, two speech therapists, and two Psychology PhD—all friends I have accumulated over the years. As I pause to think about it, I really can’t think of any other kind of issue my kids could have that I would have more resources at my fingertips, just through my friends.

Those of you in this “circle” know who you are and Cortney and I refer to you as Will’s “Dream Team”. I only hope my friendship has been/can be as comforting to you as yours has been to me over the last month.

3) Many expressed that they felt Will’s change in behavior over the last month is him reacting to the move. We feel the same way, and I guess I didn’t mention that. But had his behavior not been as drastic as it was over the course of last month, I don’t think we would be as aggressive about pursuing therapy as we are now. It was a wakeup call for us and that was when we started noticing more patterns about his processing issues because we were watch him so intently, out of concern.

4) One of the reasons I wanted to write this series was because of the blog Steven Battles Cancer. Steven (age 9) and his family used to be in our ward in Columbus and have since moved to Utah where he later was diagnosed with cancer. I started to read this blog about 6 months ago and I’ve followed it closely because of the way it makes me feel when I read it. His mother, Sonja, has kept track of all his chemo, medications, surgeries, and the impact this situation has made on their family from diagnosis to now, where Steven is in remission. It’s so moving and uplifting and in general, so relatable because it’s written from a mother’s perspective. I love how honest and real and funny and empathetic it is.

Very few processes are completely documented from beginning to end, and I thought this was a perfect opportunity to do just that. This won’t be the last and it more than likely will not be the most difficult challenge I face as a mother, but I hope my family’s experiences over the course of diagnosis and therapy will be one of hope, humor, and unity.

And if nothing else, when Will is being a punk teenager I can show him this series and yell in his face, “Look, you are the product of hundreds of peoples’ prayers and faith. Now get your crap together and act like you deserve it!!”

Alright, on to the real reason for the post. The assessment.

Our appointment was at 9:30, which we were on time for. But no one really started talking to us until 10:30. Luckily, Will was able to keep busy in the playroom and the wait didn’t seem unbearable, even though it seemed ridiculous to wait that long for an appointment that was relatively early in the day.

At 10:30, a sweet social worker names Doreen came out to talk to us. No one else was in the waiting room at that point, so we sat on the floor and talked about everything. I told her about Will developing slowly in speech since his birth, his recent behavior issues, recommendations from his teacher, theory on processing problems, etc. She was so wonderful in the way she listened and validated my concerns, I almost wanted to hug her. I knew we were on the same page and I thought, “Ok, we can do this! They’re going to be all over helping Will.”

She documented everything we talked about and at the end said, “Ok, so just to be clear, your biggest concern is Will’s speech delay and possible processing issues?” Yes, absolutely.

She took us into another room to meet with Lindsay, the psychologist. Will thought it was pretty cool that whenever he went into a new room he had new toys to play with, so he immediately sat down at the table and was ready to play with her. She explained that she would be using the Batelle test to assess his motor and social skills. She started by hiding a ball under a cup and switching it with another cup to see if Will could figure out which cup the ball was under. After a few times, he started figuring it out and she moved on to the next test of giving Will a picture of a zoo and asking him to point out different things in the picture from flashcards she put in front of him. It took him a little while, but he got them all. Then she asked him to repeat several words, which he did fine (he can repeat anything, but most words he would never repeat on his own, let alone understand what they mean). Then she asked him a few questions that went like this:

Lindsay: “Will, who do you play with?”

Will: “fjdksafjdks fdjskafjds fjdskfjewjrek Mommy afjdshfieow fjhieownf nioewf Duke fhwefnj fnwoiwfe trains.

Lindsay: What do you play with?

Will: vvnreiovnr reeiergnir greirebner erigerner trains.

At this point Lindsay (she’s a psychologist, remember) puts down her pencil and says, “Well, he’s testing at or above normal range in every category, so we usually stop the assessment at that point because I don’t think there are any services we can offer him.

My jaw dropped.

Mind: Did you listen to what the kid just said?? You really want to tell me that an almost four year-old just blurted out 4 audible words in 2 sentences and you think that’s normal??

I was so shocked that I felt intimated and wasn’t sure how to respond. The analysis took a grand total of 15 minutes and she was telling me that the assessment was over and he was fine, or at least not impaired enough for them to look at him any further.

I expressed that I didn’t feel like this was a good assessment because Will can understand much more verbal commands when you’re right in front of him. His biggest problem was that he couldn’t understand verbal instructions in a group—a vital skill to succeed in school—and there was no way this assessment could test for that since he was the only kid in the room, but the psychologist didn’t seem amused by my explanation. She wasn’t mean or rude about it, but didn’t think it was worth her time to keep looking at him.

Doreen, the sweet social worker, was in the room during this so-called psychological assessment and when I seemed unhappy (read: on the verge of tears) about their assessment findings, she said, “Well, his speech was really hard to understand and his mother has noted that even she can only understand 50% of his speech. Maybe we can pull in a speech therapist to take a quick look at him.”

Mind: Wasn’t that the freaking reason I came to you in the first place?? I know a normal psychologist should be able to detect a speech delay, but when a mother says that HER BIGGEST CONCERN is a speech impairment, shouldn’t he been seen by speech therapist no matter what? From the way they handled it, I don’t think they were planning on having him assessed by a speech professional at all.

Doreen went and found the speech therapist, Kathy, and brought her in and she talked to Will for a little bit asking him about pictures in a book and other small talk questions. She said, “Well, he mixes his word order around a little bit, so it might be a good idea to take a closer look.”

Mind: Oh my gosh, are you serious? Who even cares about his word order! What about the fact that my kid is almost four and can’t speak a complete sentence?!? But whatever, at least you’re willing to take a second look at him.

Everyone leaves the room except for Doreen, Will and I and she explained that she is now going to write up a summary combining the background information I gave her about Will, and the referral from the speech therapist to be assessed further for speech problems. This summary will have to be presented to a committee and they will decide whether or not to go forward with assessments. I wasn’t sure whether to be nervous or to laugh. Do really have a committee that decides these things?!

We walked into a room that looked like a board room with four women sitting at the long table—a principle, a social worker (different than Doreen), a psychologist (different than Lindsay), and a special ed teacher. Doreen and I presented our case and why they should take Will on and they seemed completely indifferent, but conceded. They scheduled Will for a hearing test and a second speech assessment (at the end of February), I signed a bunch of papers, and we were on our way. From the time Doreen started talking to us to when we were walking out the door was about 45 minutes—far too short in my opinion. However, I left in complete disbelief of what had just happened and the only way to even begin to explain it was to say that the two hours prior had been a complete emotional roller coaster.

For two people like Cort and I, who believe so strongly in education and the lifelong pursuit of learning, to know that our son has a serious problem that can drastically hinder his ability to learn in the classroom, is heart breaking. But its nowhere near the heartbreak of feeling that no one at the district level is very concerned about helping him (besides the lovely Doreen, of course). I learned a lot of things today. First is that I need to have “the best offense is a good defense” strategy. We have already started contacting private speech therapists to do evaluations on Will to help prove to the district that he needs help. And I’ll go to multiple other “specialists” to have them do the same thing. Second, trying to find help through the government for a special needs child is a full-time job. I have spent many hours on the phone/internet in the last week contacting doctors, therapists, insurance companies, the school district, etc. It really consumes all of my free time, but like I really have a lot of that anyway. Third, to really be an advocate for your special needs child, you have to be assertive, and do a lot of homework. Luckily, I’m good at both.

Above all, Will is so happy and when I picked him up from school today, I could hear all the kids in the class saying, “Goodbye Will! Bye Will! See you later!” to which Will waved back at all of them. Mr. Popularity.

*After talking to a close friend today (Psychology PhD), she told me the Batelle assessment is outdated and not very accurate. Add those in with the thoroughness of Miss Lindsay and we were destined to have a crappy assessment.

* I think we found a really great speech therapist. I found her from a referral from our pediatrician (whom I’ve only seen once for Duke’s 18 mos check up) and she is a stay at home mom who schedules therapy while her kids are at school. I love that she is a mom first and I want to support her in her endeavors to be at home with her kids. Plus, she has such a small case load, I think she can give us really good service. And (the coolest part) she has a home gym and you can work out while your kid is in therapy. She said that as a mother, she knows that could be the only time mothers have to exercise is while their kids are in therapy. Holy crap! This lady gets it! Will is scheduled to be evaluated at the end of the month with her. When I described the situation with the assessment at the district to her (Kathryn), she said, “We’re going to sit down and we’re going to be a team and we’re going to make a plan so that Will can get all the help he can get.” Cool, I love her already. But she also delivered some bad news…Due to budget cuts, Will has to score in the 7th percentile or below to qualify for any services. Ouch. Next time Will goes to the district for an assessment, he’ll be coming in on 5 hours of sleep, and having a coke for breakfast to put a few more eggs in our basket. A mother’s gotta do what a mother’s gotta do

My Quirky Kid- Part 1

*While by definition Will is a “special needs” child, I feel somewhat like an imposter. I’m very aware that on the scale of special needs Will’s struggles are incredibly mild, but I have realized that while under different circumstances, the emotional patterns of parents with special needs children are the same. Writing the series, “My Quirky Kid” is indented to bring to light the emotions I face as my family goes through diagnosis and therapy of our special needs child, the same emotions many other parents face. Every parent and special needs child deserves a voice. This is mine.

Maybe I should begin with the first time we saw Will. Twenty pounds lighter than pre-pregnancy weight, I feebly made it up on the exam table for the doctor to do the first ultrasound at 10 weeks. We looked up at the monitor speechless. It wasn’t his jellybean shaped body that amazed me, or his little twig-like arms—it was his heartbeat. His heart seemed so huge for such a small jellybean, and it was beating so strongly, and at lightning speed. That was our first introduction to Will. Little did I know how much my amazement of that rapidly beating heart would be an archetype for our lives together.

Will has always been a 100% kid. When he’s happy, he’s happy with 100% of his body, and conversely when he’s sad or angry, he uses 100% of his body to express it. His hand-eye coordination and overall agility was remarkable, right out of the gate. He rolled over at three months, started holding pencils correctly at 12 mos, and as a three year-old, I’ve had multiple people suggest that he’d make a great engineer because he can figure out how to open/climb on top of anything.

I’ll never forget at his sixth month check up, when we were concerned that his weight percentage had fallen and my husband asked the pediatrician if this is anything we should be concerned about. She explained that usually around this age, kids start becoming very mobile and by extension, lose weight because of all the exercise they do each day. Simultaneously, Will is rapidly circling his arms in big circles and flapping them up and down, perfectly exemplifying the doctor’s point. He’s just always been on the go. He never did anything slowly or gently. Everything was at lightning speed—just like his heart.

He played hard and slept hard. I always joked to my friends that I could keep up with Will (then, 14 mos) because he always gave me twelve hours at night, and two naps a day to recuperate. And while he was very active, he was a sweetheart, always hugging and kissing all of his friends and with his jumbled speech asking, “Ok? Ok?” when someone fell down. Will’s heart was pure and he was so loving and happy. He said his first word at fourteen months, and while we knew that was late, it never concerned us because he was so expressive in other ways and could easily get his point across.

This pattern continued over the next two years. Sleep hard. Play hard. Talk a little. He was always at the bottom of speaking skills for his age, but was still always in the “normal” range. But even our pediatrician agreed it was nothing to worry about, because it was so obvious that he was developing so quickly in physical talents that it wasn’t like he wasn’t progressing at all—he could out pitch any eight year-old at three and a half. And just when we would start getting concerned, he would turn a corner and we’d think, “oh, he’s fine!”

When he started preschool in the summer of 2011 and we saw speech improvements right away. We were so lucky to get him into a peer model program through our school district, which means the class was a mixture of special needs students and more “average” developing kids, like Will. The benefit of this class (besides that it was the cheapest preschool option around), was that it had a lot of resources for the special needs students that Will could participate in. Like having a speech therapist in the classroom once a week, and with a teacher trained in Special Education, we felt confident that if we should be concerned about Will’s speech, she would let us know. We were overjoyed by the progress Will made in school, but as his classmates improved also, the gap between Will’s speech level and his classmates was still the same.

Then October of 2011 came and completely out of the blue, we were offered a new opportunity in Washington, D.C. and we would be moving to Virginia the next month. We had a parent-teacher conference with Miss Lisa to talk about where Will was at academically so we would know where to begin when we got to Virginia. We sat down and she immediately glowed about Will being so funny and sweet, and how well-liked he was by his peers. And then she said, “But as his teacher, I would recommend that you test him for speech delays.” We weren’t shocked in any way, and in fact, I think we were relieved. And then she said, “I think there’s something going on where he doesn’t understand certain verbal instructions, or some kind of processing issue.” This was a new concept for us, but when she explained that she always had to get down on Will’s level and give him specific instructions, because verbal instructions given to the class seemed to be lost on him, we recognized that we had to do the same things for him at home and this idea made sense. I went home and immediately called Fairfax County School District to schedule testing for Will, but because of the holidays approaching the soonest they could schedule us was January 10, 2012, as the start of a two-month assessment.

The next few weeks were a complete whirlwind and everyone felt the effects of picking up and moving in such a short amount of time. Everyone was physically, mentally, and emotionally exhausted so when Will started having massive tantrums that week, we easily attributed them to all the stress of moving.

But they didn’t stop.

These tantrums were a force to be reckoned with. It was like someone and taken my son and replaced him with the Exorcist. At the drop of a hat, our sweet Will would become belligerent with animal-like instincts of rage and violence. These started happening multiple times a day and it felt like walking through a minefield. You just never knew when he was going to go off.

Instantly he would take whatever he could find and throw it at my head as hard as he could. If I wasn’t around, they were thrown at the wall. In our efforts to calm/restrain/punish him we were constantly hit, kicked, bitten, and spit upon with incredible strength for a three year-old. The only thing we could do to calm him down was to strap him in Duke’s carseat in the car and leave him there for ten minutes until he calmed down. But even harsh discipline tactics like this didn’t change his behavior in the slightest—it was just a temporary bandaid—and these tantrums continued almost like clock-work multiple times a day. Will became irrational and general protocol that he never had a problem following in the past, became impossible. Like running away from me in a store, not holding my hand in the parking lot, and other normal things seemed to be like trying to force him to drink molten lava. There seemed to be too many things awry in Will’s behavior for this to just be a problem adjusting.

I tried new tactics of putting all my focus on Will each day and letting him choose what we did, hoping this would give him a sense of power and in-turn, less blow ups. Other days, I scheduled out every minute with activities in hopes of keeping Will busy enough that he had no time to be bored and have a tantrum.

But to no avail.

A dear friend, (social worker/pediatric therapist) recommend some other ideas to try, like restraining him in a loving way to help calm him, but that only led to him vomiting multiple times from the terror of his mom sitting on top of him to prevent him from wreaking more havoc. The tantrums continued with a vengeance and my other son, Duke, was completely neglected. I had never been more exhausted and beaten down in my entire life.

Nothing was working.

I was so incredibly exhausted every day and I craved sleep for two reasons: my body sincerely needed it, and sleeping was the only true way I could escape how insanely hard this situation was—for all of us.

My world came crashing down one afternoon when I pulled into our drive way and opened up the door for Will to get out and he sprinted two blocks away from me, completely out of my sight. I had Duke on my hip and there was no way I could catch him carrying Duke, but I couldn’t leave Duke both because there is no fence in our yard and we live on a busy street. I was outraged, frustrated, heart-broken and I didn’t know what to do.

So I cried. Sobbed, actually. Right there in the front yard, while my son ran away from home and I held my other son on my weary hip.

And it was then that I conceded that this was a problem bigger than I could handle by myself. This was much more than a speaking delay. Especially when he did the exact same thing the next day.

I was completely distraught and I was overcome with sadness and guilt. What happened to my son? He felt completely unreachable and I felt like I couldn’t even reason with him in anyway. But as his mother, there was a whole deeper layer of guilt. Was he acting this way because of my faults as his mother? Was it my fault that I didn’t know what he needed to feel better? I knew Will better than anyone, but even then, I was at a complete loss with how to help him. I carried him for nine months, and have raised him and loved him every single day for almost four years—shouldn’t I be able to calm him down when he’s upset or be able to parent him in a loving way to prevent such violent behavior? I felt like a complete failure, and as a caregiver, I was completely drowning. At my lowest point, I sobbed in my husband’s arms that I wanted “the old Will” back. The month after moving to Virginia was dotted with bouts of my crying (daily), and every night talking with my husband about what we were going to do. All we could do was hold out hope that January 10th would give us an answer.

I took the boys to the library and as I was passing a table at the door, I saw a book called "The Elephant in the Playroom: Ordinary Parent’s Stories of the Highs and Lows of their Special Needs Children". I started reading it that night and was overcome with other parent’s stories of their children diagnosed with Autism, ADD/ADHD, Aspergers, Sensory Integration Disorder, Bi-Polar, Speech Delays, and Schizophrenia. While our experiences were very different, our emotions—as parents— were exactly the same. One mother talked about her son’s speech delay and they knew something was wrong when they realized their son only understood nouns, and was eventually diagnosed with Auditory Processing Disorder (APD), meaning that what he hears is different than what his brain interprets. His behavior seemed similar to Will’s and I thought about if Will could have APD. I knew Will understood more than nouns. He understood verbs well, too. But the more I thought about it, the more I realized that Will didn’t speak or understand anything except nouns and verbs. No prepositions, pronouns, or other filler words.

The realization floored me. This was why when I’d tell him to go look for his lost toy behind the couch, he’d walk over to the couch and look confused when he got there. This was why I always had to get down and look him in the eye when I gave him a verbal instruction, one simple instruction at a time. This was why when he was in a group and a verbal direction was given, he was the last kid to do the task because he had to wait to see the other kids do it first to be able to understand what to do.

I called my friend (the lovely therapist, noted above) and told her some of the things I had noticed in his behavior with regards to speech and I said, “it’s like he just doesn’t understand what most words actually mean,” and she confirmed that she thought he had a problem processing information he heard. I asked her what kind of therapy is given to kids with processing issues and she explained that while diagnosis is different, therapies can be really similar to children with autism, using speech and occupational therapy. I also did more research matching more symptoms from Will’s behavior to those of APD. But I also learned that an APD diagnosis is lengthy and can only be given by an audiologist. But the biggest problem was the test for ADP isn’t done until age seven, due to the complexity of the assessment.

We talked for a long time and I expressed my fear of going into Will’s assessment next week and the powers at be from the school district won’t give him the help I really feel he needs and she said, “Amy, you don’t have all the answers as the parent, but you’re the best advocate for Will and you’re going to break down the door if you have to for Will to get the help he needs.” I could feel the hairs on the back of my neck stand up as she said this and I knew she was right. I was Will’s advocate. I didn’t know the answers, but I knew what I needed to do to get the answers. This is my job as his mother—to to stand up and speak for him when he can’t on his own. To be the voice of his pacing heart, when he didn’t understand and when the words wouldn’t come out.

We felt impressed to ask our family and close friends to hold a special fast for Will that next Sunday. All of his actions screamed, “I’m not ok, Mom. I’m really not ok right now, Mom. I need help.” He needed help, and so did we. I haven’t been very vocal about this struggle, mostly because I haven’t had time to vent to my friends about it because I had my hands full helping Will as much as possible. But even with a very vague description that Will was having a hard time adjusting to our new life in Virginia, I had a few dear family members and friends comment about how close they felt to us as they fasted for Will. We knew (and have always known) this was a really special kid.

The next Wednesday, Will started preschool again and it was like a switch went off inside him. He was the “old Will,” loving, kind, and so very happy. It was amazing. Of course, his speech was still the same, but his behavior had done a 180 and we know that was an answer to our prayers and fasting. Tackling Will’s special needs are so much more conceivable when I’m not constantly worried about Will’s blow-ups.

So today is the big day. January 10th. Today starts the diagnosis, and hopefully, therapy process.

Let’s go.

Missing

Will and I made the mistake of looking through all the pictures on my phone. We found this picture of an adorable little boy with a blonde Afro, taken by his best friend's photography skills.


Will really misses this little boy and the countless hours they spent playing/fighting over trains.

I miss his mom and all of our boring afternoons spent together pulling our kids off each other, discussing recipes, NPR stories, and randomness.

Duke really misses his little brother. They were just getting into the "play with each other" stage when we moved. Surely they would be great playmates by now.

Cortney really misses his Daddy and all the late nights they spent together watching BYU Sports, knowing he was the only other person in Columbus that knew/cared as much as him about a group of 18-23 year-old boys they would never meet.

We really miss this little boy. And his family.

Please come visit us. Soon.