best friends

There is a boy in Joel's class that Joel says is his best friend. His name is Michael, and of course we love Michael. I remember the first time we did a play date with Michael. Michael's mom and I laughed and joked that this was the quietest playdate we'd ever seen.

Although Joel loves Michael, I have no idea if he and Michael have ever had a real conversation, or even really talked to each other. They are off in their own world, playing near each other but not with each other. There's not a lot of interaction going on, but Joel talks about Michael at home and asks "Michael please?! Where's Michael?"

The other day I dropped off Joel at school, and he sat down next to Michael. Joel looked at the door as I left and started to cry. As I watched through the window, I saw Michael pat Joel on the shoulder, and hold his hand gently.

(So now two of us were crying.)

I will always treasure the sweet relationship between these two little boys. Thank you Michael, for being his friend.

2015

It has been so long since I have written anything here. I started to worry that I was only sharing depressing things, that by focusing on our struggles I would somehow depress my friends and family. But honestly, I do better when I am sharing stories, whether they are good or bad.

Joel has made so much progress. He's using so many words and phrases that I have hard keeping track. He loves to read and play on his Ipad. (We are mean parents, there are only educational apps on his Ipad and primary songs... no games unless they involve reading or math.)

The things we are working on have evolved, as have we as parents. I remember going to an event at Joel's school around Christmas time, and a mom told me about her nonverbal kid. "Mine too," I said. Totally out of habit. And I sat there and ate my words when I met her son, who is TRULY nonverbal, while my Joel sat there and chattered about Nemo and Lightning McQueen. Sometimes it's so hard to remember how far he has come, how difficult that phase was.

Joel is at a special charter school for autism students this year. His class is all little boys with autism, a crazy little kindergarten group full of quirky kids. He loves going to school, and seems to have a good time while he's there. His teachers are great and we feel so fortunate to be part of a community that  understands these special kids.

like all you lovely folks, I have a dream

We wrangled the kids into the car the other day to pick up my sister and grab some goat cheese pizza (so good!). While I was getting the kids in the car Joel noticed a container of mini-m&ms and asked repeatedly for it. "Candy... please candy... candy please. Candy!!!!" I tried to distract him from the candy, and our way, we started listening to our favorite Pandora station, Disney music. "I've got a dream" from Tangled came on and Joel was very very excited, he loves to sing "I've got a dream" and jump on the trampoline. After singing the song I turned to Joel and said "What's your dream, buddy?" He started to say something, then paused and changed his mind. "Candy!" he shouted.

Yup. Candy is his dream. I gave in after that. I mean, it IS his dream, after all.

empathy

Just got this email from Joel's teacher:

Hi Kristen-

I wanted to e-mail you right away and tell you about what happened today! Joel bumped into a friend on the carpet, and after he noticed that she was upset he took her hands in his hands and bent down to look into her eyes (and followed her eyes when she turned away). He kept following her eyes until she made eye contact with him , It lasted for about 45 seconds. It appeared he was showing empathy and trying to say sorry in his own way without words. I wish I would have had it on film because he hardly ever makes eye contact with anyone, let alone him initiating it! I was so proud of him!! J

Spooky! Hello, friend, and what's a bear to do.....

A few random Joel happenings:

Last week Joel was over with Peggy, our respite care worker. They were watching a movie and Joel came up and grabbed her hand. He then said "Spooky....spooky." Peggy was concerned that he was scared of something and said "Oh, ok, what's spooky? What has you scared?" He looked right in her eyes and said "I'm... POOPY." And he was. This is groundbreaking, earth shattering progress here, if we can get this kid to verbalize we may finally be able to potty train!

Yesterday Joel went up to Ike, a friend at school. He tapped Ike on the back, and said "Hello, friend!". First time we have ever really seen him initiate contact with another kid that didn't involve him stealing their toys..

His current favorite app on my phone is a Winnie the Pooh one that he wouldn't even play with for the longest time. Something must have changed, because the other day in the car he just asked "What's a bear to do?" That's the name of the story that Pooh is reading in the app. Such a cute boy.

Cole and Joel

There is a little boy in Joel's summer camp whose name is Cole. For some reason (actually not that surprising) the preschool staff has a very very hard time keeping them straight. As a result, we have Cole's swimsuit, Cole's towel, and Cole's water bottle. Cole's family has two of our swim trunks, our towel, and all of Joel's diapers. The relationship between Cole and Joel is pretty funny as well. Cole seems rather high functioning to me, and gets irritated by Joel rather easily. However, he also follows Joel around and seems to love playing with him. I'm very into my son "having friends" and so this is his first kind of friend. It;s a big deal for me, and I find myself wanting him to be "good" so Cole will want to continue to be his friend. Hmmm. Unfortunately, yesterday Joel elbowed Cole in the eye and gave him a black eye... don't know how that will affect the blossoming friendship. I saw the whole thing happen, and Joel kept trying to rub Cole's hair. Cole asked him to stop three times, Joel ignored him, and then elbowed him in the eye. Ah well, one day he'll get it, right?

"Awesome" and "What's stock?"

Four and a half years. I have been waiting for my son to have a conversation with me for four and a half years. In my more depressing moments, I used to daydream about what we'd discuss and all the things he'd tell me. I promised him I would always be here to listen to him or to help him understand anything he was struggling with. I wished and hoped that he'd one day say things of his own accord, but some days progress is slow. And other days, it just pure awesome progress that makes you want to laugh and cry with happiness.

Today is one of the good days.

The past couple of days have been fun in getting some spontaneous speech from Joel. Rob and I have been talking about going to see the new Star Trek movie and I wanted him to watch the first movie with me again so I could make sure I understand the characters and everything (I am really easily confused lately, and have never seen an episode of Star Trek in the first place. So basically, consider me a blank slate.) Anyway, we were at about the middle of the movie and Joel came downstairs. Although he shouldn't have been out of bed, he had a huge grin on his face when he saw a movie playing. He watched for a bit, then snuggled right up to Rob, stared at Captain Kirk and said "Awesome!". It was one of the cutest things I'd ever seen.

And today! Well, today was the day. We were watching "Mater's Tall Tales" and got to Joel's favorite cartoon, featuring Tokyo-Mater and a drift race? (Yeah, I don't know what it's called. Grift race? Shift race? Lift race?) There's a part where they are outlining all the rules for the race and one of the rules is that the losing car will be stripped of all it's modifications and become stock. (Here's a clip of the cartoon in case I am not explaining this well..... after seeing it so many times I just gloss over it now.) They make being a stock car sound like the most awful thing in the world, which I suppose is fair if you are a Tokyo racing car. 

       Joel turned to me and asked, clear as day, "What's stock?" The first thing going through my head was "Seriously, kid? We've waited nearly five years to have a real conversation and you're wasting precious time asking me about cars?"  I fumbled a bit. "Well, uh, it's when a fancy car gets all of it's shiny accessories taken away, all the paint and extra pieces and becomes a boring car." I hoped that would answer his question, and I felt so nervous, like I didn't know what to say or how deep of an explanation he was really looking for. But that seemed to suffice.

So, in the words of my Joel, today was "Awesome!"

fish, fish, swim, fish............

Well, we have ourselves a little boy who is obsessed with water. From the time he was little, he has loved to take rocks and drop them into water. he loves the sound, loves the splash, just loves the whole thing. One of his favorite things to do has been to go out on my dad's boat. And with that means swimming. This is a whole mixed bag for my family, seeing as how Rob is not a huge fan of the water. (I should say was, he is pretty great in it now with our two little fish children.)

Like probably all moms, I am super nervous about my kids in the water, and especially Joel. You tell him not to get in the water yet and he does not even hear you. He went through a phase where he would just run and jump into a pool, and then a phase where he was afraid to get in the water at all. But now he feels pretty confident in the water, and it has absolutely nothing to do with me. It's because of my dad and my sister, really. My sister has a pool where we spent at least every other day last summer walking him around in the pool, swimming with him. Because we had that available, he got to go really often and just loved it. And whenever my dad is around Joel, there is one thing on the agenda-- swimming. Without my dad and sister working with him, we would never have this:

My son is holding his breath and going underwater! I want him to succeed but I am too hover-y and he does better when my dad pushes him. If it were up to me, I'd just carry him around the pool all day because he's scared! He's my baby! The last time my parents visited, my dad taught him how to "monkey-walk" around the pool with his arms. This had positives and negatives, as he quickly figured out how to climb out of the pool and run into the hot tub before Grandpa could catch him. Still, I am so encouraged to see him working on something he so obviously loves to do.

The water fixation doesn't end with swimming though. The boy knows "Finding Nemo" by heart and always has his Nemo fish and Daddy Nemo fish and turtle with him as he watches the movies. I see him doing things like making the fish swim, and the turtle talk to the fish, and I think "He really does get this. He just can't get the words out!". In fact, yesterday Joel stole my phone to play with his beloved "Finding Nemo: My puzzle book" app. When I had the sound turned off, that didn't stop him, he just tried to read the story to himself. Granted, it was some gibberish  but then you'd hear "Nemo... boat.... Marlin... daddy....Sydney Harbor......Dory......Turtle....Shark".  

Our last development in fish is rather boring, but fascinating for Joel. He has taken to watching (and loving) fish nature documentaries. His current favorite is the Blue Planet series from National Geographic. Rob and I have found ourselves alternately fascinated and bored out of our minds as we watch the tidal migration patterns of salmon or the growing variations of coral. (And in one case, I ended up sobbing my eyes out during a documentary about a turtle who almost gets killed about a million times. I kept yelling "No little turtle, no!")

So, that's our current fascination. Pretty much every day when he wakes up he says "Swim, fish, swim, fish?"It's rather fun to be let in a little to his world.

I wish

I wish I was better at this. I wish I knew how to help my son, how to communicate with him that I cherish him, love the snot out of him, and also that it is not ok to poop and smear it on the walls. I wish there was a way for me to push a button and see what is in his brain, what he is feeling at school and in therapy. The challenge of having a severely speech delayed kiddo is that I have no idea how much he is getting. At times, I can see glimpses that he is far smarter than I give him credit for. But here I stay, in this limbo of wondering how much to expect and how realistic I need to be. Will he be baptized, serve a mission, get married, go to college? Does he understand about our Heavenly Father, and Jesus Christ? When I read him stories about praying and having faith, does that mean anything to him? Does it make him feel special? Will I have to put him in someone else's care, a group home at some point?

Unfortunately, every parent deals with many of these questions, whether your child has developmental issues like mine or behavior issues or whatever. All we can do is do the best we can as parents. Because it boils down to this-- am I doing the best I can for him? Darn tootin' I am!

If I had to pick a perfect mother for my son, I can guarantee you it would not be me. I would pick someone much more patient, more tolerant, more intelligent, more fun, more active, more beautiful, more compassionate. I do not deserve this precious boy, and I struggle with understanding why this is our journey. But, I am the mom he has. And so that is that.

I feel so guilty when people tell me "Oh, you are such a good parent." Well, I have my days. I also have my bad days, where I moan and groan and hate autism and just want my son to be "normal". I don't write all this down to get accolades or more notches in my mom belt. If I can help one mom out there who is going through what I am going through, than all this is more than worth it.

our normal

I'm often asked what type of therapy/preschool/interventions we are doing for Joel. Here is an outline of our day:

Up at 7:00 am. Bath, frozen waffles, sesame street, then wait for the school bus to come at 7:55. I've found that if he is awake any longer than this he gets too excited for school and acts crazy for the rest of the day, so I have it timed down to the minute when he needs to wake up to keep him busy before the bus gets here. He goes to a special needs/ developmental preschool from 8-12, then back home. We eat, lunch, almost always a variation of chicken nuggets, pb&j sandwiches, waffles, or fries. Maybe a muffin or a banana. He is very, very picky about food lately, so that's something we have been working on a lot (in fact, he ate an egg salad sandwich at school the other day!). We have about an hour or so of free time, then our Habilitation worker for ABA therapy comes for a few hours. ABA therapy is Applied Behavior Analysis, where we chart a bunch of goals and watch his progress over time. Then we use the data to make new goals for teaching. Our Habilitation has been recommended for 35 hours a week-- that's a lot of time! Our worker comes every day, but we are still nowhere close to hitting that "recommended goal".

 Depending on the day, we will either have occupational therapy, speech therapy, or physical therapy during the afternoon as well. Around 5, everyone goes home and we eat dinner. Sometimes Joel goes to his respite provider's house, and sometimes we hang out as a family and wait for Rob to get home to play. Kids are in bed around 7, and I can finally use the bathroom in peace :)

Phew! They are crazy busy days, and Charlotte is in speech therapy and occupational therapy too, as well as weekly visits from her developmental specialist. We also have a couple other random things we get to do-- Joel has an eye condition that requires visits to a pediatric opthalmologist and Charlotte has tubes in her ears and has to go to the ENT periodically. Making sure we make it to all these appointments has made me crazy! But it is so rewarding to see things progressing and changing. I look at where Joel is now compared to where he is a year ago, and it is astounding,

April is Autism Awareness month

As many of you know, my son Joel has autism. I'd like to take the month of April and help explain a little more about my son, how he communicates, how autism affects us daily, and what we can do to help him.

Inherent intelligence:

It has never been my style as a parent (or a person really) to stay at home all day. I am the type of person that craves interaction and connections with people. So we do not shy away at all from taking Joel out to do run-of-the-mill daily things, like going to the grocery store or the mall to buy new shoes. These outings don't always go smoothly though-- Joel is constantly distracted by things like water grates in the street or the tread on a car's tires. He gets excited or over stimulated, flaps his arms, squeals, screams, and sometimes tries to find other ways to express how he's feeling. As you can imagine, a lot of times when normal social behavior is expected (church, the post office, the library), these behaviors are often seen as him misbehaving or being naughty. It breaks my heart to see people give him dirty looks or tell me that he needs more discipline at home. These behaviors are the only forms of communication I get with Joel-- his speech is coming along well but spontaneous speech still isn't his strong suit. But just because he can't tell me how he's feeling doesn't mean he's stupid or dumb. He's a smart kid-- he knows all his letters and an read several words. He loves music. He loves sports. I look in Joel's eyes and can see his little mind just working on something. He has intelligence, he wants to be loved.

Some friends of mine have shared this video from youtube. I think it's worth watching to see how different a simple thing like walking down the street can be for someone like Joel.

facing reality

 I remember filling out the m-chat form in the pediatrician’s office. I knew about the m-chat, my husband was in medical school and I’d read about it in the developmental books I was reading. I left several answers blank, deciding how to answer them. Would he grow out of these tendencies to not look people in the eye, not interact with others? I found myself blindly trying to predict Joel’s future based on a split second impression and a stupid form in the pediatrician’s office.  But when the doctor came to clarify the answers, I couldn’t accept the fact that Joel might need help, more permanent help. So I told the doctor he was fine. A week later, I finally talked to my husband about the fact that everyone was saying Joel needed to be in speech therapy and physical therapy and probably occupational therapy and yet I refused to put him in any of the programs, stubbornly insisting it was a phase and that he’d grow out of it. I still remember that conversation and how neither of us wanted to admit it, but Joel was getting worse.

   

The day I found out my son had autism is stored way back in my memory, in a spot I’m afraid to access. I’m tired of crying. The feelings and roller coaster motion of the day happen in a part of me that I try not to open too often.  When we began Early Intervention, I was sure it was a short term thing. Joel has been in therapy of some kind since he was 16 months old. It started out as physical therapy, when he wouldn’t walk. He was 18 months old and still crawling around, eating things off the floor. I thought he only needed a little physical therapy and that would be that. I had no idea we would be in therapy for years more. We progressed into speech and occupational therapy.

At one of our appointments, an aide asked me if my son had autism “No!” I said, spitting the word out. “Why would you ask that?” She met my eyes and seemed as uneasy as she backtracked. “I just work with autism kids a lot,” she stumbled, seeing my reaction. “Does he qualify for long term care?” she asked. Long term care, for people with severe disabilities, life altering conditions my son could not possibly have. I was angry now, so incredibly angry that she was asking me this, and angry at myself for not reacting well. I didn’t answer her, but we left the office and switched therapists.

 But she had planted a seed. Here was my beautiful, talented Joel at 20 months whose babbles of “mama” and “dada” had been reduced to shrill screams and tantrums. He wouldn't look people in the eye and seldom played with other children. He spun in circles and ran into walls. I knew that she might be on to something, but I pushed it away.

After that I would find ways to bring up autism at all our appointments. At this point, I feel now that I was just begging someone to actually tell me yes, it is autism. We had great therapists, so no one did because that wasn’t their job. It wasn’t until we took Joel to a developmental pediatrician, almost a year later, that I heard the words I had been wanting and waiting and dreading to hear. “Yes, it definitely looks like autism,” the doctor said kindly. Rob and I nodded and held hands tightly as our son wandered around the room, oblivious to any human interaction. I gulped and tears streamed from my eyes as I asked her “Well, what do we do now?” The answer was what we were already doing, plus so much more. Find a habilitation program, start ABA therapy at once, continue with speech therapy, find an occupational therapist, find a music therapist, and keep him in his developmental preschool class.  That was our beginning, really. From then on, we jumped into anything Joel qualified for

    I look at our history and sometimes want to kick myself for not just accepting things and diving in. When he was first recommended for speech therapy, I laughed and rolled my eyes. “This kid talks all the time! Why would he need speech therapy?” I said to Rob. Well, because he wasn’t speaking English, that’s why.  When we began Early Intervention and I felt frustrated, I took us out of the program for 3 months because I truly thought he did not need it or was just a late bloomer. I was struggling to face reality, and at times I still am. But that's part of life with a kid on the autism spectrum. The good part, the absolute best part, is that his victories are hard-fought. Although his progress seems slow and at times interminable, when he hits a goal it is the sweetest, most beautiful feeling.

. 

appointment anxiety

We just had our bi-yearly developmental pediatrician visit for Joel. These visits give me such crazy attacks of anxiety and panic that I often wonder if I'd be better off medicated into a stupor. The past couple of visits Rob has been able to come to, which really helps. He can hold my hand and let me squeeze it when I think that I'm going to cry. And he usually comes away with a pretty bruised hand. the doctor is nice, and I know she doesn't mean to make me cry, it's just the nature of the beast. I mean, I wouldn't want to be in her position, telling well-meaning parents that sorry, your son is not going to fit the perfect mold you've planned on.

That sounds bitter. I am, but not really. Yes, I wish things were different, wish he were totally happy and communicative and didn't get made fun of for his tics. But then I see how far we have come, how much progress and potential there is in this kid, and I lighten up. The truth of the matter is, he's very self-motivated. So most of the time, he IS happy because he's doing what he wants to do.

We've just got to work on me, then.

Intro

Hi. I'm Kristen, and this blog is about my son Joel, who is now 4 years old. I need a place to put down all the crazy things that run through my head in terms of Joel's development. I'm married to a great guy, and we also have an 18 month old daughter, Charlotte, and a dog named Tess. And some fish, but I'm not sure if they are still alive so we're not including them in the headcount for now.....

I should back this crazy train up to about four years ago.

In the beginning, everything was perfect. My husband had been accepted to medical school in Arizona, I was  due with our first baby in September, and we had just bought our house. Sure, moving away from our families in Utah was difficult, but we were so darn excited to start a new chapter of our lives. We were going to be parents-- we would be our own little family unit. we were expecting a little boy, and he'd be a carbon copy of all of our best features-- mechanically minded like his dad and love to read like his mom. We'd play soccer together outside in our new backyard. Life couldn't get much better.

Fast forward 18 months. We had this, a beautiful, beautiful moment with my husband's family where our son FINALLY took his first steps. After months of coaxing, Joel finally started walking at nearly-19 months-old.
Surely all this would come around now, all the speech we'd been waiting for would bloom, we'd finally see what was going on inside that little head of his. We were positive, no doubt, that now that he was walking everything else we had been anticipating would fall into place. "He's a boy," I heard all the time. "Just wait, he'll be talking your ear off soon."

And sadly, in some ways we are still waiting.

In fact, most of his speech disappeared. Where a cow had said "moo" and cars went "vroom" they just.... didn't anymore. He stopped looking people in the eyes. He began spinning in.circles and flapping his hands and running into walls. He became obsessed with finding soft things to run against his skin, and especially fixated on using people's hair as a way to get this "fix". And he would scream gibberish for hours at a time.

I don't want it to sound like the past few years with Joel have been torture. But it was these things, these "symptoms" that drove me to early intervention, that drove me to insisting on therapy and a developmental pediatrician consult. I am incredibly grateful for these "symptoms", because they were the driving force I needed to get out of denial and into a proactive state.

The kid has made some great, great progress. Right now, he is communicating verbally with an echolalic tendency. A typical "conversation" with Joel goes something like this.

"Who's that on your socks? Is that Lightning McQueen?"
"McQueen."
"We're going to go downstairs and eat some lunch."
"Lunch."
"Do you want a sandwich or chicken?"
"Chicken"

These conversations are HUGE, and are what usually get me through the hard times. Because he IS communicating with us-- slowly, limited, but yes, it is there. This is the result of many, many hours of ABA therapy, developmental preschool, and speech therapy.  The boy has taught us so much and to see his growth and progression is truly remarkable. It has been a hard couple of years--the years of 2 and 3 for our boy were some of the angriest I have ever had and have ever witnessed in a child.

Our "official" diagnosis is ASD- autism spectrum disorder. Behind it are also a global language delay, and a handful of other oddities-- Duane syndrome, poor muscle coordination, etc. etc. Obviously, I have a lot to say on all of this, so don't be afraid to jump in and say hi! Do you have special needs kids?