Hanging in there

The last few months have been a whirlwind.  Some days we feel like we are barely keeping our heads above water.  Day to day life gets so overwhelming at times with 3 kids (an extremely high energy 6 year old, an autistic 4 year old in the midst of potty-training, and a full-fledged toddler who likes to climb everything).

Since Matt's diagnosis of 15q24 microdeletion syndrome, he has undergone a lot of expensive testing.  The good news is that his brain, spinal cord, and heart all appear to be structurally normal.  The bad news is that his insulin-like growth factor 1 (IGF-1) and thyroid stimulating hormone (TSH) are low.  We have an appointment with a pediatric endocrinologist next week to discuss what comes next.  We've already been told that he will have to undergo a workup in the hospital for growth hormone deficiency.  From what I've read about this process, it will not be a fun day for Matt-man :(

All parents of special needs children understand the financial strain medical and therapy bills can take on a family.  I did have to start working full-time 3 1/2 months ago and am grateful to finally have good health insurance as a result.  With our old insurance we had met our very high deductible pretty early in the year, but were still paying hundreds extra each month in co-insurance for Matt's various therapies and medical bills. Applied Behavior Analysis (ABA) therapy is one thing that will not be covered by our new plan, but the state of Ohio is working toward insurance reform, and there is a chance that ABA therapy coverage could become mandatory within the year.  We are keeping our fingers crossed for this to happen!!

In terms of Matt's overall progress in therapy, we seem to be taking 2 steps forward and 1 step backward.  If we look back to where he was a year ago, he has made incredible progress, but it is easy to forget this on a day to day basis because the older he gets the more obvious the difference between Matt and his neurotypical peers becomes.  

Today I took him with me to get an oil change for our vehicle.  He spent the entire time making guttural noises from his throat, climbing on the furniture, doing headstands, and at times just writhing like he wanted to crawl out of his skin.  He then proceeded to lay face down in the middle of the waiting room and started to lick the floor.  I felt embarrassed for him and wanted to lie to protect him from being thought poorly of when someone else in the room asked me how old he was.  

I feel sad for Matt when I think about how he is perceived by the neurotypical world in which he lives.  I don't want anybody thinking poorly of my little Matt-Man.  He is so smart and charming and a true sweetheart.  What the other people in the waiting room didn't understand is that Matt hears fluorescent lights.  When he is in a place with a lot of them (like today), we've noticed that he consistently goes into sensory overload and has no idea how to cope and drown the lights out.  In these environments, he has a hard time even understanding his name when I call him.  I'm sure he needed his noise-cancelling headphones and to be body-brushed from head to toe, but I had failed to bring his body brush or his headphones.  I'm also torn over the idea of body-brushing in public.  When we got away from the lights and into the van in the parking lot, he was his old giggly charming self again.

I feel blessed to be Matt-Man's mommy.  I do hope that life gets easier for him and that I get better at teaching him to cope with difficult situations.  He has a long road ahead with daily therapy, a world that doesn't "get" him, and now the possibility of daily injections of growth hormone.  Through it all, he loves to laugh and be a clown.  He brings joy to all who have taken the time to get to know him.  Thank you, God, for our little boy.

Matt, 4 years old
Photo courtesy of  Remember When Photography by Jamie Jahns

15q24 Microdeletion Syndrome

As you can probably guess from the title of this post, we finally have a medical diagnosis that more fully describes Matt-man and his many unique features and challenges (thanks to some expensive lab tests known as the CGH microarray and FISH).  We learned that Matthew is missing 9 genes on the long arm of his 15th chromosome including NEIL1, MAN2C1, SIN3A, PTPN9, SNUPN, IMP3, CSPG4, MIR631, and SNX33.  It doesn't really change anything, but it gives us a better idea of what to expect and what other health concerns to be on the lookout for.  Many of the things we find most endearing about Matt-man, like the cute way his ears poke out, are a part of 15q24 microdeletion syndrome.  Here is a great link to an informational booklet about the syndrome 15q24 Microdeletion Syndrome.  It describes things much more clearly than I could.  Unfortunately, genetics is not my medical specialty!

Thank God for good friends!

These past few weeks have been filled with a lot of uncertainty as we await the final results of Matthew's genetic testing.  We were supposed to get this done as part of his initial autism workup 9 months ago, but we waited until we had met our insurance deductible and life had settled down a bit from initial doctor and therapist appointments.  He had a test done called a CGH microarray, which can detect tiny chromosomal abnormalities.  This actually did pick up a possible chromosome microdeletion, so we now have to wait for the results of a more targeted test called FISH before we know anything for certain.  If this second test is positive, it doesn't really change anything as far as current therapy and treatment goes.  What it does do is give us a better idea of what is going on and what other health problems we need to be on the lookout for.   As you can imagine, the past 3 1/2 weeks since getting his blood drawn have been a little bit emotional.  A dear friend from church sent me this note and scripture tonight.  It was just what I needed to hear right now.

"I was awake at about 4am and thinking about Matt (among other things) and this scripture from Psalm 139 came to me, and I felt I needed to personalize it and share it with you. As frustrating as autism is, it is really cool to know that God made Matt just the way he is and God has a plan for his life....

For you created Matt-Man's inmost being;
you knit him together in Evangeline’s womb.
We praise you because Matt-Man is fearfully and wonderfully made;
your works are wonderful,
We know that full well.
Matt-Man's frame was not hidden from you
when he was made in the secret place,
when he was woven together in the depths of the earth.
Your eyes saw Matt-Man's unformed body;
all the days ordained for him were written in your book
before one of them came to be."

The Unintended Consequences of a Doll House

When it comes to toys, there are some toys that are stereotypically “male” and others that are “female.” Tea sets and baby dolls are usually for the girls while army men and weapons are usually for the boys.  Now I can hear many of you say, “There’s nothing wrong with girls playing with army men or little boy playing with dolls!”  Of course girls can be caught playing with “boy” toys and boys can be caught playing with “girl” toys, and if that should happen, you're right; there is nothing wrong with that.  But dance around it all you want, some toys just scream “BOY!” and others politely whisper, “girl.”  There is nothing wrong with the stereotypes and there is nothing wrong with boys and girls treading into one another’s territory once in a while.

Toys, whether gender-neutral or geared for a specific gender, are meant to assist children with the world of make-believe.  They are intended to foster a child’s imagination and encourage play.  One of the problems we encountered with Autism early on was the fact that for Matt-Man, make-believe, imagination and play were not simply hard to come by, they were altogether non-existent.  He played with toys so differently, so as to lose himself in the toy.  When Nathan was turning two, he would line cars up, make them race one another and throw out the losers until only one car was left.  Conversely, Matt-Man was content to sit in a corner by himself staring at the spinning wheels of a car, sometimes for hours.

Nathan would even give different voices to the different cars in order to identify which car was speaking.  Matt-Man had never raced cars nor made them speak.  He had never taken army men and made them fight each other.  He had never pretended to drink tea or even play with dolls.  For about three and a half years, he has been content with nothing more than just sitting in a corner, spinning wheels.

Slowly that has changed.  A doctor told us that when Matt-Man begins stimming on something (like spinning wheels), we shouldn’t stop him from doing that, but we should engage him with whatever has his attention and try to show him a different way to play.  So when we saw him spinning wheels, we started to say things like, “Is that a car?  Can that car drive on your head?”  We would then take the car, drive it up his arm, gently up the side of his face, and park it on top of his head.  Then we all laughed when it fell off his head, but before long he was back to spinning wheels.

So perhaps you can imagine the shock Matt-Man gave us on our daughter’s first birthday.  She was given the stereotypical little girl toy: a dollhouse.  It came with a mommy, daddy, a baby, and some pieces of furniture.  Our daughter did what most one-year old girls do when they get a new dollhouse and people—she put the baby’s head in her mouth.

What surprised us was Matt-Man’s reaction to the dollhouse.  This stereotypical girl toy caught his attention.  He grabbed a car (stereotypically boy) and started creating an imaginary scene with the car, first putting the car on the roof.  Then, he made the dollhouse daddy say, “Hey, there’s a car on that roof!  Get off the roof!”  After that, he pushed the car off the roof of the dollhouse, followed by, “Uh oh!  The car got an owie!  Do you need a hug?”  He then gave the car a big hug and said, “The car is all better.”  The story kept going when he put two cars on the roof and the dollhouse quickly became a fight scene between Lightning McQueen and a dump truck.

Evidently he had been doing some of this with a teacher at school just that week.  The teacher “galloped” a toy horse to Matt-Man and said in a silly voice, “Hi!  What’s your name?”  He answered the horse’s question in an equally silly voice.  Then the two of them clip-clopped their toy horses into the sunset.

This type of play, the use of toys to foster an imagination, has been a long-time in coming.  What Nathan was doing before two years old, Matthew has only begun to do just weeks before his fourth birthday.  Despite the delay, this is worth celebrating!  And if it takes a little girl’s dollhouse to foster this kind of play, perhaps our home will have a lot more pink toys in the future.

Making Conversation

No matter how much you love your child, there are always going to be some rough weeks where the autistic behavior and lack of communication can really get you down.  We've had a lot of those this summer, so this past week has really been a breath of fresh air.

When I pick up Matt from school, I always ask him how his day was.  Typically there is no response to that question, and I feel like I am carrying on a one-sided conversation the whole way home.  This week, however, Matt has been answering that question with a lot of enthusiasm:  

• I had fun at school today!
• It was a great day at school with Brycen!
• I like my teachers!

We learned that he doesn't tell us about his day like a neurotypical kid would.  If we ask Nathan a direct question about his day, he can give us a direct answer.  For instance, "Nathan, tell me about your day."  "It was fun.  I did a lot of coloring today, and I chased the dog.  She was barking at a squirrel!"

Matthew will not answer quite so directly, but we learned that he does tell us about his day, by "parroting" things he heard his teachers or peers say throughout the day.  We realized that by quoting his teachers verbatim, he is telling us what went on at school, things that were funny or important to him that he wants us to know.  This week we have heard him say:

• Do you need to sit in the hallway? Yes! (I'm guessing he was telling me that he got in trouble)
• Are you ready? brushy, brushy, brushy (I'm guessing he's telling me about having body brushing done today)
• It's Brycen's turn to pull the wagon (apparently Matthew was monopolizing the toys)
• No sleeping at school! (hmmm.... either this was a game, or he was very tired today!)  

Since realizing that he was using echolalia to try and tell me about his day, I've been able to engage him in conversation a lot more effectively.  It seems to be a big boost to his self confidence when he realizes that mom actually understands what he is saying and wants to talk about it.  This self confidence has encouraged him to start making more verbal requests in the past couple days.  Today it was, "Mom, can I have some peanut butter?"  Such a simple phrase, but this was one of the very few times I've ever heard him call my name to get my attention.  Of course I gave him some peanut butter!

To top it off, we continued one-to-one conversation last night by making faces in the mirror together.  This is something that Nate and Audrey have both liked from babyhood, but Matt had never shown any interest in until last night.  We were making angry faces, silly faces, surprised faces, sleepy faces, sick faces, and his favorite - scared faces.  He was using sign language and making very animated expressions as he told me that he was scared of the alligator (daddy took him in an alligator bouncy house a couple weeks ago).  Matt was really into it and giggled his head off when he saw what he was doing in the mirror and how funny his face looked.   I'm looking forward to many more silly evenings making faces in the mirror with my little dude!


Make no mistake; Matthew is still autistic, and in being autistic, he still has some peculiar, often frustrating behaviors, but these things are trivial in comparison to the pure joy of two-way communication with your child!

Difficult Encounter

Today was a very difficult day for me, but not for the usual reasons.  I work as a pediatric physician assistant and part of my job is monitoring normal growth and development.  I met a child a little younger than Matt-man with many classic signs of autism today.  Usually when parents share concerns about autistic-like behaviors with me, they've already seriously entertained autism as a possibility and are almost expecting the referral to get a further workup.  This family was different.  They had no idea that this was a real possibility.  The "A" word had briefly entered their thoughts, but never seriously.  They were in for a routine sick visit and mentioned some of his unusual behaviors as an afterthought.  After a very long discussion and more probing I had few doubts that their child was probably on the spectrum, and I really didn't want to tell them.  I remember keenly the feelings of shock and grief that I had experienced when first going through the diagnostic process with Matthew and those feelings resurfaced today when I looked into their eyes.  I teared up along with them as we discussed the long medical and educational diagnostic / therapeutic process that awaited them.  They have such a beautiful intelligent child with such a long difficult road ahead  - just like our little Matt-man.  I have prayed for them a lot this evening - that God will give them peace and strength through this all.

Bittersweet Milestones

Audrey, our 10 month old, is developing very normally so far.  In fact, she is ahead of schedule on a lot of things.  She walks well, and is now trying to bounce on our little trampoline and dance - 2 things that Matt still doesn't do.  She can climb halfway up the slide in our backyard - Matt just figured this out a few months ago.  It really hit me hard today when she very carefully and gingerly stabbed 3 different cubes of avocado and put them in her mouth.  There was no intense concentration and forceful missed stabs and tears like we still see with Matthew.  It just seemed like the most natural thing in the world to her.  I know you are not supposed to compare your kids, but it's hard not to when your 10 month old is starting to pass your 46 month old on certain skills.  I don't want Matthew to feel more frustrated when he sees his baby sister doing things he struggles to do.  Hopefully it will just encourage him to keep working hard.

Matt-Man's New Voice

We haven't posted in a while.  There haven't been any major happenings in the past couple weeks.  Just normal ups and downs associated with life :) 

I did get a really neat video of Matt this morning.  He is using his "new" loud, non-singing voice to tell me that he got an 'owie'.  He does revert back to a sing-songy echolalic phrase in the next sentence, but this is some amazing progress. 

Just so you can understand how big of a deal the video clip from this morning really is, I'm going to first post a video from a couple months ago.  This first video is Matt using his sing-songy traditional echolalic manner of talking.  This is what we heard constantly for months!  I didn't know if he would ever find his real voice.

And now, here is the clip from this morning.  I am SO proud of Matt!  His hard work at school is really starting to pay off.

Breakthroughs

Matt-man has had a couple of amazing weeks!  His teachers have been working really hard with him to help him learn to answer simple questions appropriately.  He has some classic catch phrases that he typically uses to start a sentence: "Oh no, it's ...." or "I want ......" in a very sing-songy voice.

All of a sudden last week Matt started dropping the catch phrases and speaking with inflection in his voice!  It has truly blown me away.  With prompting he is now saying almost anything!  The most special phrases I've heard from him this past week are "hi, mommy" and "I love you, mommy".  I've waited almost 4 years to hear those precious phrases from his lips.  These still require verbal prompting, but I'll take it!

I'm also starting to hear a few phrases from him that he seems to have come up with on his own.  He had his 2nd session of hippotherapy this week.  The indoor arena where this is done is full of birds.  As he was riding the horse, he all of a sudden looked up and said completely on his own "there are birds up there."  Just a simple phrase, but he thought it up on his own and wanted to share it with us.  He then repeated it several times very proudly :)

Matt's play skills are improving too.  His new favorite game seems to be "ring around the rosie".  He seeks me out and asks to play and is an avid participant - he gets to yell "THREE" when it's time to jump up, and he loves it.  This is a massive improvement on the child who could lay and stim for an hour off of the lights and sounds of an electronic toy just a few months ago and did not initiate play with others.  We've been very intentional in trying to help him learn how to play.  It started with removing all of the electronic toys from the house and minimizing the amount of time he was allowed to spend alone during the day.  This has been good for all of us, and I certainly don't miss the sounds of toys singing obnoxiously!

Matt is still very autistic and has a lot of sensory issues, but he is making definite measurable progress in learning how to interpret and interact with the world.  I'm so proud of my little guy!

Matt, May 2012

"Therrible Threes"

If you are not a parent, or are a new parent, don't let anybody fool you into thinking there is such a thing as the "Terrible Twos" with kids.  There isn't.  In fact, the only reason the "Twos" are called "Terrible", I think, is because of the hard "T" sound that begins both words.  "Therrible Threes" is more accurate.  When my older son was two, life was wonderful.  He slept through the night, was progressively on his way to being fully potty trained, still took decent naps during the afternoon, and genuinely wanted to share.  Unlike babies, he didn't put everything he could get his hands on into his mouth (we are reliving that nightmare with a new baby in the house as legos, paper, dog food, and you name it go straight down the hatch).  He was generally playful and still liked his mommy and daddy and his every aim was to please us.

Something drastic happened almost overnight.  On the day before his third birthday, we put our sweet little toddler to bed, without a fuss, but a ferocious monster woke up in his place the next morning.  Throughout the next year, that same ferocious monster woke up morning after morning.  We had been told that the twos were terrible, and when age two passed, we thought we had been spoiled.  Little did we know that many other seasoned parents had gone through the same thing: the "Therrible Threes".  He no longer wanted to please us.  His life was now marked with temper tantrums, throwing food, and fighting us at bedtime.  He didn't want to go outside to play, but he didn't want to be inside either.  Our happy-go-lucky two year old turned into an indecisive hard to please three year old.  He no longer wanted to please us.  Quite the opposite; it seemed as if the more frustrated he made us, the more satisfied he became.    

Now, we have another three year old who happens to be Autistic.  There are some quirks and character traits he displays that are clearly derived from Autism.  But he is also three.  So now, we're having a hard time deciphering between what is Autism and what is "3".  Breakfast time, lunchtime, dinnertime, bedtime, potty time, play time and any time are all "Therrible."  

The kid has been drinking from a cup for a long time now, and since he is still a little guy, we expect the occasional "spilled milk."  However, once in a while (and by "once in a while" I mean "daily"), he takes a big drink and then lets the contents in his mouth dribble down his chin, onto his lap.  We think to ourselves, "Is that typical with most autistic kids?  Do many of them just let their drink dribble onto their laps?"  Often times, he asks for another drink and against better judgment, we oblige thinking, "it was just an accident, he didn't mean it."  This happened just the other day.  He took a big drink of milk and slowly spit it out of his mouth.  When he asked, I kindly gave him another drink, only to have him turn the cup upside down and pour the milk directly onto the floor.  This, of course, is followed by a giggle as he looks up at us with his mischievous grin.

Or, take his newfound life as an exhibitionist.  Our sweet, compliant two-year old Matt-Man used to let us dress him any way we chose, and he would be satisfied to wear clothes, period.  He is now learning to dress himself which is great!  At some point, the kid has to learn independence.  At the same time, he is also learning to undress himself which, while also a great step toward independence, is also turning into a nightmare.  "Matt-Man, go put your pants on," we say, as he is running around the house in a tee-shirt and undies.  I know he can do that, I've seen him do that before.  Yet of late, he returns wearing nothing at all!  Just the other night, we put both boys to bed, fully clothed, and like all brothers who share a room do, our boys did not fall immediately asleep.  Instead, they played in their bedrooms, with lights off, causing a ruckus, as boys do.  And as dads do, I went in to break up the party and remind them that they were to go to sleep lest they meet the wrath of dad.  Upon entering the bedroom, however, there I found my little Matt-Man naked as the day he was born, laughing his silly little head off.

One last example.  He is also learning to go potty, which again, is a positive thing.  This has been a long time coming.  He has been in diapers for far too long and those things ain't cheap.  Even better, he is learning to pee standing up much earlier than Nathan ever did.  It won't be long before he and his brother are in the bathroom having a "sword fight" into the toilet.  In the meantime, here he is, standing on his red stool, proudly shooting a long stream of urine at a Cheerio tossed in there for him to have something to aim at.  It has gotten to the point where he's getting pretty good at it too.  "Matt-Man, get on the stool and go potty!" is all we have to say, and he does it.  Except, recently, he had a change of plans.  We were in a bit of a hurry, so I opened the toilet, placed him on the red stool, gave him a target and said, "Go Pee".  Then I left to attend to the baby.  When I returned, he had shut the lid of the toilet and was peeing on the lid, laughing hysterically.  I caught him in mid-stream and yelled, "Matthew, NO!"  But I was too late.  He simply looked up at me with his mischievous grin and kept peeing on the lid, watching his urine puddle on the floor.  

He is cute and adorable and such fun.  Our little Matt-Man has an infectious laugh, a grin that will melt the hardest heart, and blue eyes that could convince a pretty girl to do anything he wanted.  He has some quirky behaviors strictly tied to Autism, like lining up toys, echoing what he hears, staring at patterns, and constantly opening and closing doors.  Yet, he also has some behaviors that prove he is a three-year-old, like peeing and pooping anywhere except into the toilet, running through the house naked, and dumping milk on the floor, almost for sport.  Whereas he used to do everything to please us, now it seems as if his one desire in life is to make me bald by my next birthday.  He's doing quite well, thank you very much.  Yes, my little Matt-Man is cute, adorable, and such fun, and also "Therrible."

“Echolalia” and Small Victories (and Small Victories)

“Echolalia” is one of the fun new words that has entered our vocabulary in the recent past. Merriam-Webster’s dictionary defines it as “The often pathological repetition of what is said by other people as if echoing them.”  Echoes can be fun.  There are some places where you can talk and then hear your own words bouncing off of walls, or coming back at you from inside a cave.  “Echolalia” is when someone else echoes what you say.  For the longest time, this is how Matt-Man has talked, and even to this day his speech is very much echoing word-for-word the things we say.  It’s like he is a cave, and when I speak to him, whatever I say bounces right back.

In general, this is how all people learn to talk.  Our infant daughter is learning to talk and does her best to mimic the consonant-vowel combinations we say to her.  Evangeline won the game of getting her to say “mama” before I could get her to say “dada”.  Pretty soon, however, her vocabulary will increase to about 10 words she can use on a regular basis and after that, her speech will boom exponentially.  All of the words any of us know were words that we heard someone else use and we found the right context in which to use them.

My 5-year old participates in “echolalia”; the annoying 5-year old version where a child repeats everything you say just for the sake of being annoying.  For instance,

Me: Nathan, what are you doing?
Him: Nathan, what are you doing?
Me: No seriously, what the heck are you doing?
Him: No seriously, what the heck are you doing?
Me: Stop it, that’s annoying!
Him: Stop it, that’s annoying!

Even verbal threats can’t stop him from this.  The sequence of “I speak” and “he obnoxiously repeats” usually ends when I say, “Nathan eats boogers!”  That is something he will not echo.

While all children learn to talk by repeating what others say, and while other children repeat what you say just to get on your nerves, Matt-Man echoes to an obsessive degree, as do many verbal Autistic kids.  It was cute to begin with.  We would encourage his speech by saying, “Matt-Man, say ‘Mommy’”.  He would respond with the exact same phrase, word-for-word.

“Hey Matt-Man, let’s go for a walk.”
“Matt-Man, it’s time for a bath.”
“Come and get your diaper changed, buddy.”

All of these and more would receive the same “echolalic” response.  Again, all kids learn to speak by repeating words they heard from someone else.  Yet at some point, kids take their corpus of words and make it their own.  They begin to use those words in a context that makes sense and can respond appropriately to questions when asked.  I could have a conversation with my older son when he was 2.  Granted, it was a very basic conversation, usually about what was for lunch or Sesame Street, but he had taken the words he learned and used them to have a meaningful dialogue with me.  This has been hard to come by for Matt-Man.

He is steadily improving, even within the last few months (now that he is almost 4).  Much of his speech is still echolalia, but more and more his repetition is in context.  He clearly repeats words and phrases he has heard us say, but he uses them at the right time.  He is exceptionally food-motivated, and the only time he will voluntarily engage us in conversation is when he wants a snack, or lunch, or a snack, or a drink, or a snack.  We used to say, “Do you want some peanut-butter toast?” and he would answer, “You want some peanut-butter toast.”  It was only a few months ago before he would switch pronouns and say, “I want some peanut-butter toast” when asked.  And now, he doesn’t even need to be asked.  Instead, he will tell us, “I want some peanut-butter toast.”  We had never been more ready and willing to satisfy a child’s desire for a snack than we were the first time he, on his own, asked for some food.

It took no time to convince him to talk when motivated by food, and it seems, much to the chagrin of mom and dad, that he echoes those things we would prefer he didn’t remember.  For instance:

Me, yelling at the TV: That stupid idiot!  If you’re a major leaguer, you should be able to turn a routine double-play!
Matt-Man: Oh no, that stupid idiot!

Finally, there are those things we would give a kidney to hear him say and no matter how hard we try, he simply will not budge.  We have tried for the longest time to get him to say, “I love you, mommy,” or “daddy.”  It’s funny; I could probably get him to recite the Pledge of Allegiance backwards if it involved receiving a Twix, and just about everything he hears throughout the course of a day, he echoes, but if we try to fix his mind on loving mommy and daddy, he stares at us stone-faced.  He can copy his brother when he says, “Guess What?  Chicken-Butt!” but I couldn’t pay him to say, “I love daddy,” even with a Twix.

However, just the other night, we got what has been the biggest, most uplifting surprise to date.  We follow a pretty regular bedtime routine: clothes off, go potty, jammies on, brush teeth, hop in bed, pray with mom and dad, kiss and hug goodnight.  This is usually where we push the hardest, “Say, ‘I love you mommy’. . .” met with the same stone face every night.  That particular night, nothing was out of the ordinary.  The boys undressed, went potty, put their jammies on, brushed their teeth, hopped in bed, prayed with us, and got a kiss and hug from us.  And as always, we tried to get Matt to say, “I love you mommy/daddy,” and not surprisingly, we were met with a stone face.  Nevertheless, we told Matt that we loved him, and told Nate the same.  That’s the moment when we had the biggest surprise, at least in Matt’s life.  Totally unprompted, and without us having to offer him a Twix, Matt-Man said in the clearest, most distinct voice, “I love you, Nate.”

Echolalia, for sure, but echolalia with incredible meaning.  Echolalia, but genuine and sincere.  Echolalia, but Matt-Man meant it when he said, “I love you, Nate.”  The dad in me would love for that to have been my name, but not only did Matt-Man echo in context, he also expressed affection for his very best friend—something that has been incredibly hard to come by.  I am satisfied with that.

Echolalia can be cute.  It can also be a bit frustrating.  Sometimes I wish I could just chat with my kid, about bugs, snowmen, baseball, or cars.  I can’t do that.  I have good reason to hope that some day I will be able to do just those things, but if God were to forbid him ever to speak another word, we will always have the memory of those unprompted, sincere words from one brother to another, “I love you, Nate.”  It was meaningful to us, his parents, and you bet it was meaningful to Nathan too!  So frustrating as it may be, we celebrate the small victories.

Progress

I wanted to share excerpts from an email and video I received from Matt's therapist this morning.  So encouraging to see as a mom.

"... I love, love, love to work with Matthew.  He is a puzzle in the works.  I am so encouraged with his progress.  Yesterday was really an amazing day.  He was not just conversational for just a little part of the day, he was off and on for the whole day.  I hid things I knew he liked before he came in the room in the morning and after he was there an hour or so he looked at me and said, "I want the drums".  So, I said, "oh, okay, here they are".  Then there were several other items that I did that with.  It was a bit of a test for him.  This was because we came off of a weekend where I knew that his routine of school had not happened for several days.  For him to recall such an appropriate request was awesome.  I can tell that you are working with him at home on a lot of things.  You as parents are the real reason for his growing success.  Your work is what makes the difference.  There is no one else more important or more influential in Matthew's life than his family, most specifically you as parents.

...To  explain the video.  I had made a lengthy video but it will only allow for me to send 42 seconds.... (what a rip off, lol)  We are sitting in circle time in the morning.  Between his legs are weather pictures (sun, snow, clouds, rain, and fog).  When we sing the song we are doing different motions (clapping, rubbing hands, patting knees, etc.).  He is doing all of the motions without my prompting at all.  He is watching the teacher but then does look to me for approval.  He makes great eye contact and continues with the motions as he is looking at me.  He also was pointing to each picture (the right one) as we sang about it.  "

Matt has had a good week at home too.  He initiated play with me a few days ago without any prompting from me at all for the first time I can remember.  I've only caught him lining up items twice this week (that used to be something he did whenever he had the chance).

I'm thankful for these small victories.

Thoughts from Dad: What I wish you knew about Autism

Did you know April is Autism Awareness Month? Bam! You’ve just been made "aware". I’m not sure what awareness does other than simply get you to think, "Hmm, Autism exists. Now I am aware!" Perhaps now more than any other month, you might be motivated to do something you wouldn’t otherwise do for an autistic kid, or his handsome dad (Let me also make you aware that our kitchen is in dire need of straightening up, if you want to help).

Nevertheless, "Autism Awareness Month" it is, so I would like to take this opportunity to make you aware of some things you may not have already known.

1) My son, Matthew, is autistic. He is three years old. We call him "Matt-Man".

2) Autism is real.

Many (presumably those whose kids are not autistic) excuse it by saying, "Every child is different." True, but there is a range of "normal" and my son, and other autistic kids, fall outside of that range. There is "normal", and then there is "Something isn’t right."

Many (presumably those whose kids are not autistic) think it is one of those things like "ADHD" which has a reputation of getting overprescribed and overmedicated and blown out of proportion. I would challenge you to take my son to live with you for a week and see if you still think that’s true. Matt-Man does not make nor keep eye contact. He does not volunteer affection. Matt-Man is a social misfit—If there is a group of kids playing together, he will avoid them at all costs. Matt-Man cries when he is upset and will not—cannot—tell us why. Matt-Man has severe sensory processing issues—sometimes the only thing that can calm him down is to put a stocking-cap on his head, even in the summer; he requires daily brushing, scratching, and squeezing from head to toe. Matt-Man cannot jump, flaps his hands, crawls on the floor while rubbing his head on the carpet, lines up his toys in perfect rows, and can open and shut a cabinet door for hours. All of these things are true and Matt-Man is only mild-to-moderately Autistic. They are exponentially worse for other kids.

3) Some of Matt-Man’s weird quirks are endearingly adorable. Unlike many other Autistic kids, Matt-Man is verbal, and he starts every sentence (and I mean EVERY sentence) with either "I want…" or "Oh no!" "I want a cookie." "I want to go potty." "I want to throw me on the couch." "Oh no, the baby’s crying again." "Oh no, it’s raining outside." "Oh no, I peed in the bathtub." Also, he is monotone. By that I mean he talks in the note "D". Sometimes it is an "A" but most often it is "D". I could almost tune my guitar to the note his voice makes when he talks.

4) Autism is not caused by vaccines. a) Matt-Man and my other two children were vaccinated against the same things, yet only one is autistic. It would stand to reason that if one child were autistic, all of them would be, or none of them would be. b) The "science" that "suggested" there was a link between vaccines and autism has been debunked by the scientific community. It was downright fraudulent. As it turns out, a handful of quacks, led by Dr. Wakefield, using too small of a sample and questionable scientific methods developed a "report" which was later retracted by the broader medical community (http://www.bmj.com/content/342/bmj.c7452). (We should also thank former playmate, Jenny McCarthy, for jumping on the "anti-vaccination" bandwagon, spreading bad science). On a related note, if you haven’t vaccinated your kids, please let me know so my kids can avoid your kids like the plague (which, coincidently, vaccines eradicated).

5) Matt-Man is not stupid. Quite the opposite, he is very smart. He can follow simple commands, do some problem-solving, and he is incredibly resourceful. For example, we have a pack-n-play in our living room for the baby. Matt-Man wanted in one time, but the walls of the pack-n-play are too tall for him to climb. So, he independently went into his baby sister’s room, grabbed a small child’s chair, dragged it to the living room and used it to boost himself into the pack-n-play. Dumb kids with no problem-solving skills wouldn’t be able to do that.  In addition, he has a sense of fairness – if other kids are getting treats, he wants one too.  Just recently, he was in a situation where the adult in charge gave all the kids a piece of hard candy (a notoriously bad idea) except for Matt-Man because, ironically, she understood that would be a notoriously bad idea.  Matt-Man proceeded to melt down at the injustice of other kids getting a treat except for him.  He knows the difference between right and wrong.

6) Matt-Man, like other autistic kids, is a kid first; not a label, a statistic, or a science experiment, but a kid. He likes to laugh and be tickled. He likes to tackle his daddy (and as comes with the territory, likes to injure daddy with a swift knee to the crotch). He likes to be thrown into the air and thrown onto the couch. He also likes sitting on mommy and daddy’s lap having a book read to him. He likes eating candy and cookies and does not like eating vegetables. He steals candy and cookies and throws vegetables on the floor when we are not looking. While he does not often volunteer affection, he loves hugging and being hugged, kissing his baby sister, giving and receiving hi-fives. He likes going down a slide and swinging on a swing set. He likes playing in dirt and picking up worms. He likes being mischievous and causing trouble, like putting dirty socks on his brother’s head. He likes playing with cars, throwing balls, watching Thomas the Train and swimming. He likes petting, playing with, and being licked by the dog. He thinks bodily noises are funny and fights us when it is time for bed.

7) I love my little Matt-Man; not more than my other two kids, and certainly not less. And while I would not have signed up for having an autistic kid before we had Matt-Man, fully acknowledging that some days are worse than others, I would never in a million years consider going back. I will take my Matt-Man with all the frustrations, challenges, joys, and opportunities he affords and will continue to thank God for the incredibly wonderful enigma that is my son, Matthew.

ABA (Applied Behavioral Analysis)

Matt has been in ABA therapy at a private preschool for 2 1/2 months now.  It was so hard to go from having my little boy home full time with me to suddenly being in school for 25 hrs a week. 

ABA is hard work for a little 3 year old.  The first few weeks he would come home exhausted, go right to bed, wake up for dinner, and go back to sleep for the night.  Every day was the same thing.  I have to believe this is the right thing to do.  The most widely accepted research states that this is the best way to help a child with autism.  It is hard as a mom though.

I wish I could keep my little guy home with me.  Let him spend his days playing outside with his brother and sister.  This is his big brother's last year at home before starting kindergarten - part of holding Nathan back a year was to give the boys another year at home together to just be kids.

So, is the ABA therapy working?  I guess so in some areas.  They tell me Matt is passing his programs and doing great.  He is becoming more independent.  The potty training is starting to actually produce some good results. 

I don't know if he is talking any more though or connecting with us any better than before.  It's only been 2 1/2 months, so I'm sure these things will come, but I wish we could see big results a lot quicker. 

He is just now getting to the point where he is not utterly exhausted after school every day.  Now I have to make the decision on whether to get him started in his prescribed occupational therapy 2-3 hrs per week and his prescribed speech therapy 2-3 hrs per week.  More hours of not interacting with my son, but his developmental pediatrician feels that he needs this.  My mommy heart wants to just let him be 3.  I wish I knew what to do.

Emotions

It really is remarkable how many conflicting emotions we have experienced over Matt's diagnosis.  For me it started with denial followed by deep grief over the loss of what MY hopes and dreams were for my child.  I worried that he would always be stuck in his own world and never have deep meaningful relationships with others outside of his own family.  This was mingled in with fear - will he ever be able to live independently?  I have so much uncertainty about what the future holds for him or our family.  Mingled in with these emotions was a deep sense of relief that we finally knew what was going on with our child and could understand him a little better, and help him be the best that he can be with what therapy is available at this point in time.

I am at the point now where I have accepted the diagnosis and have discovered a lot of joy in being able to relate to my son a whole lot better than I was before when I expected him to be "normal".  I am much more sensitive to his subtle cues than I ever was before.  We do have a lot of very hard days.  Days when he cries a huge portion of the day and can't tell us why in spite of our best efforts to break through to him.   Days when he hums or sings to himself all day and gives us zero eye contact.  Then suddenly, something will strike him as funny and his blue eyes look deep into mine and his whole face lights up in the most beautiful smile.  I love catching these glimpses into his world.  There is so much more to Matt than he lets on. 

Those who know me well, know that I am not prone to outward displays of emotion - Matt gets some of his introverted nature honestly - but sometimes I am caught off guard by somebody who is particularly kind and caring in their question of "how are you doing, really?"  These are the moments that I want to break down and cry right there.  I can't summarize all of my emotions, but the fact that they truly cared and wanted to know is enough to make my day.

My husband, Danny, is not prone to outward displays of emotion either.  I've known him for 10 years and can count on one hand the number of times I've seen him cry.  He is absolutely right in his statement that the label of autism doesn't change who Matt is, and it just helps us know what to do to help him.  Even he has been affected by some unexpected cycles of emotion though.  It hit him in the sports aisle at our local department store that Matt may never be able to play a game of catch with him.  That was when the tears came for him.

My son, Nathan, is 5 years old and has had a rough time figuring this all out.  We tried to explain what autism was to him, but it's difficult to explain to a 5 year old.  We told him that Matt's brain works a little differently, that he's a smart kid, but he just has a hard time with a lot of things that come easy to the rest of us.  At first Nathan thought that autism was contagious - he didn't want to sleep in their shared bedroom for fear that he would catch it.  He also wanted to know if you could die from autism.  This was heartbreaking to hear, but I gently explained to Nathan that autism is something you are born with, that is just means your brain works a little differently, and that no, people do not die of autism.  In a typical kid-like fashion, he rebounded from these emotions within minutes and was fine sharing a room with his brother again.

I've found him to be a lot more patient and protective of Matt than he used to be.  He also has a lot of pride in his voice when I hear him tell other kids that "my brother has autism, his brain works different".  One thing that really seems to have helped him is enrolling him as a "peer buddy" in the autism school that Matt is attending.  He is interacting with kids his own age with mild to severe autism, and seems to be a little better at understanding that different is okay.  He has one buddy at school who runs up to hug him whenever he sees him, and I've seen them walking hand in hand at school.  I really think Nathan is already an awesome brother to Matt and will only get better.  He actually fights more with his 7 month old precocious baby sister than he does with Matt!

Audrey will grow up accepting autism as a part of daily life; she won't know any different.  At 7 mos old she is always crawling over to Matt and joining him in whatever he is playing with.  I actually think it has been great for Matt to have a baby sister.  She clearly loves him, and it is much harder for him to retreat into his own world and perseverate on a task when baby sister is crawling all over him and stealing his toys.  He seems to have a very soft spot for her already.

There will be a lot of ups and downs with autism, but this happens with parenting anyway.  Right now the difficult days seem to outweigh the really good days, but I am confident that as we grow in our role as parents and as Matt gets the therapy he needs, that the balance will shift.  I feel incredibly blessed with the family I have been given and would not trade any one of my kids for the world!

The Long Road to an 'official' Diagnosis

There is enough awareness being raised in this day and age that most of us know how crucial early intensive treatment is to having good long-term outcomes with autism.  With that in mind, I assumed that once I mentioned my concerns to Matt's pediatrician the referrals and treatment plan would follow very quickly. 

I emailed the M-CHAT results to my son's pediatrician that very night.  A month later we talked about them at Matt's routine 3 year old check up.  A month after that we finally got in with an occupational therapist for an evaluation.  She was concerned that he might be on the spectrum, so scheduled us a follow up appointment to get a 2nd opinion from a speech therapist.  That appointment was scheduled several weeks later (all this time, my son was not in any type of therapy, mind you).  The speech therapist had the same concerns and recommended an appointment with the developmental pediatrician.  The earliest appointment the developmental pediatrician had available was 4 months out (I later learned that this is not bad compared to some areas of the country where patients have to wait 8-9 months).  We and our general pediatrician called the office several times, which is probably why when there was a cancellation, the developmental pediatrician offered the appointment to us - this allowed us to get in 3 months sooner than we would have. 

The diagnosis was pretty clear cut and expected, our son was autistic.  For us, the journey from the failed M-CHAT to an 'official' diagnosis was almost 4 months to the day, and this was significantly shorter than most people have to wait. 

Okay, so now what?  The doctor recommended 25 hrs per week of Applied Behavioral Analysis (ABA) therapy.  He recommended we get an educational diagnosis of autism through the local school district so that we would qualify for our state's autism scholarship which we could use to pay for one of the private autism schools in the area if we were willing to opt out of the public school options.  I later found out that getting an educational diagnosis of autism would have qualified him for this program even if he never received the medical diagnosis! 

If I had to do it over, I would have set up an evaluation with our local school district the minute I had concerns.  We could have gotten that educational diagnosis and started ABA therapy much much sooner!  Instead, it was another month and a half waiting for that educational diagnosis and then I had to submit all the paperwork to the state to get approved for the autism scholarship.

My son was not yet 3 when we had our first concerns that he might be autistic.  He was almost 3 1/2 when he had his first day of ABA therapy.  There is something wrong with our system.

Trust your instincts

I think most of us with an autistic child share the frustration of having had our concerns explained away and missing clues to an earlier diagnosis.  Hind sight is 20/20 after all.

I voiced concerns about Matt's development several times, but he passed his M-CHAT (autism screening test) at 18 months and 24 months, so I was reassured that he was just developing at his own pace.  After all, every child is different, and Matt was so quiet and laid back that we just assumed it was a personality issue.  We decided that since his screenings were all normal, that he was just going to be an introvert.  He had also had a lot of ear infections, so the doctors and I thought that maybe this was the reason for his speech delay.  All of a sudden Matt started to talk at 2 1/2 years old (we later learned that all he had was echolalic speech, but we didn't know that was something to worry about at the time), so we pushed the secret fears even farther away.  When he had an abnormal gait at 15 months, we took him to a nationally renowned specialist in pediatric orthopedics.  We were assured that he was within the realm of normal and to come back if he was not walking well by 24 months.  All he needed was time.  He had extreme aversions to textured foods, but the pediatric dentist noted a highly arched palate to explain that fear away - he just couldn't mash food well because of his anatomy.

Deep down inside though, I knew Matt was a special kid.  He just had a vulnerability about him recognized by all - we couldn't put a finger on it.  As he got closer to the age of 3, my fears that had been suppressed for awhile started to resurface.  He just wasn't catching up with his peers.  In fact, the differences between him and other kids his age were becoming much more apparent.

It really hit my husband and I one day when we had some kids over for a play date.  The pack of children would be playing on one side of the backyard, and Matt would be on the other side of the yard.  Wherever the pack of kids went, Matt would go the other way.  I didn't want to consider the word 'Autism' as a possibility.  I had the irrational fear that if I said the word, it would make it true.  It would cause my perfect child to be something less.

Around Matt's 3rd birthday, I brought the matter up with my husband.  The conversation went something like this:  "did you ever think that maybe Matt is the "A" word?"....... I couldn't even say the word for fear it would make it real.  My husband said, "well, yeah, but you didn't seem worried so I never said anything."  My response:  "well, you never said anything, so I thought I was being overly concerned."  We pulled up an online M-CHAT, filled it out, and had it automatically scored.  We didn't realize just how much regression had taken place between ages 2 and 3, but this was the first time he had failed it.  The dreaded result:  "your child is at risk for autism, see your doctor" came up.

I just stared at the screen in front of me, letting it sink in, a million thoughts running through my head.  I'm a medical professional in pediatrics, how could I possibly have missed this in my own child?  I got out my journals and reviewed the diagnostic criteria for autism with a more objective eye toward my own child.  Sure enough, he fit criteria perfectly.  I'm trained to recognize autistic spectrum disorders, how could I miss it in my own son?  Thus began the journey towards an "official" diagnosis and getting help.

This experience has made me a better practitioner.  I've learned that if a parent is concerned about their child's development, even if they've passed all of our validated screening tools, you need to take them seriously.  At the very least, they deserve to be referred to early intervention services or the developmental pediatrician for a closer look.

My ever contemplative Matthew at 3 years old

Getting started

I need a place to put down some of my thoughts.  So much has happened in the past year, I don't know where to start.  A year ago, 'autism' was a word that rarely entered my vocabulary outside of the work realm (I work in a pediatric office).  Now it's an integral part of my life.

I can explain the difference between autism, PDD-NOS, and asperger's without any difficulty.  I use words like "stimming" and "perseverating" in context.  I've spent countless hours studying the latest research, battling with insurance companies for coverage, making appointments with specialists, therapists, and school evaluation teams.

Initially I obsessed over the diagnosis and spent my nights worrying and researching instead of sleeping.  I almost allowed the word 'autism' to take over my life.  Meanwhile, my precious little 3 year old boy, hadn't changed a bit since being officially labeled.  He was still first and foremost a 3 year old little boy who needs his mommy and his naps!  He adores his big brother and baby sister and can charm the pants off of anyone who meets him.

He brings a very special dynamic and joy to our household, in spite of the unique challenges.  This is going to be an interesting journey for sure.