Interesting Stuff About Matt Man: Echolali-huh?

Echolalia is one of the fun new words that has entered our vocabulary in the recent past. Merriam-Webster defines it as “The often pathological repetition of what is said by other people as if echoing them.”  Of course, an echo happens when you 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 to an exponential degree.  For the longest time, this is how Matt-Man talked, and still 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 we speak to him, our words bounce right back.

In general, this is how all people learn to talk.  No one learns language in a vacuum.  We all learn by hearing, making sense of what we hear, and then appropriating those words, repeating what we've heard.  Evangeline and I were always in competition with one another trying to get our kids to say Mama or Dada first.  We did this by saying Mama or Dada repeatedly until they could mimic what we said.  

Our 8-year old, of course, takes full advantage of this, teaching his baby brother words like poop, toot, and vomit.  And if the public schools today are anything like they were in my day, our kids will soon be bringing home a whole new colorful French vocabulary. 

While all children learn to talk by repeating what others say, children like Matt-Man who are verbal are prone to echo to an obsessive degree.  At one point, 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.”

“Hey, you need to go potty.”

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 is hard to come by for children like Matt-Man.

Hard to come by, but the amazing thing is that while they are prone to Echolalia, they have an ability to adapt their mimicking speech to the context they are in.  Much of Matthew’s speech is still imitation, but increasingly his repetition either answers a question or informs us about something that happened in his day.  

One day when he was about 4, on the car ride home from school Matthew said, “We’re going to take a walk.”  The next day it was, “You can’t have M&Ms until you do your independent work.”  And the next day was something different.  When we talked to his teacher, she said, “That’s how he’s telling you about his day.” 

By repeating verbatim "We're going to take a walk," he was telling us that on that day, he and his classmates went on a walk.  And the next day, he was telling us that his work was rewarded by M&Ms.  He still does this.  Periodically, he gets off the bus and tells us, “You need to go think.”  His teacher has a time-out chair in the classroom where students who make a bad choice have to go and think about what they’ve done.  “You need to go think,” is Matthew’s way of tattling on himself!

Other verbal children with Autism do something similar.  I met a woman whose brother (in his 20s) loves movies and has memorized movie lines.   That is how he communicates.  If he is asked a direct question, he quotes The Dark Knight as a way of answering the question.  Beyond being a clinical example of Echolalia, this is his way of adapting his language in a way that can communicate with others.

All of us learn the same way: hearing, making sense of what was heard, and making those words our own.  Children like Matt-Man do this to an excessive degree.  At first glance, it seems like Echolalia is senseless babbling, but it is simply their way of communicating.  These children are impressively skilled at being able to adapt their speech into a form of active and direct communication with others.  It isn’t that they can’t communicate, but they have learned to use their language skills in a way that makes sense to them.  Now all we have to do is learn their language.

Musings from Mom on Mother's Day Weekend

Life has been clipping along at a pretty steady pace lately.  We've fallen into the routine of 25 hrs of ABA therapy plus an hour of speech and OT every week.  Matt is making slow steady progress.  He occasionally has his setbacks, but overall he is doing amazing.

One of the biggest life changers for us has been that we no longer have to clean up his poop and pee multiple times every single day.  Forcing him to wear underwear and use the toilet is finally paying off. He still needs prompts to remind him to go, but he is so close to being completely potty-trained at last!  I can't even begin to express how proud I am of my little guy for this major accomplishment.  Many of the children with his syndrome really struggle with toilet training.

Growth Hormone therapy has been one of the best decisions we ever made on Matt's behalf.  He turned from a sluggish child to an energetic one literally overnight.  This has carried over into his response to therapy as well.  He is able to focus better and for longer periods of time.  When I get home from work he actually runs to meet me at the door and hug me.  I had resigned myself to the fact that I would probably never get that type of a greeting from Matt-man.  My heart overflows with joy and thankfulness each time I see him running to me with open arms.  What an incredible blessing to this mother's heart.  It has taken 4 1/2 years.  He is also physically growing taller from the Growth Hormone.  He grew as much in the past 3 months as he had grown in the entire year previously!  It is a huge relief to see his growth curve turn around.  He is not fazed by the daily shots, and non-medical dad has taken on the responsibility of giving him his injections every other week.  I'm proud of them both.

We are tossing around the possibility of integrating Matt-man into a typical preschool part-time this fall to prepare him for kindergarten next year.  If we do, he will have one of his behavioral therapists with him to guide him.  I hope this will work out.  I'd love to see him integrating more with neurotypical children.

Speaking of integration, Matt-man is on his first ever tee-ball team!!  He is on a team with his 6 year old brother, Nate, and many of Nate's classmates.  They are all very protective of Matt-man and extremely helpful.  He has a lot of difficulty with the mechanics of fielding, throwing, and hitting the ball, but that kid sure loves to run the bases.  He has a look of pure joy whenever he gets to run with his very unique gait.  I think it puts a smile on everyone's face to see him running with all of his might and a grin on his face!

The biggest thing on my mind this weekend in regards to Matt-man is that he is happy.  He works so much harder than the rest of us just to do the activities of daily life which causes some frustration, but for the most part he is smiling and giggling as he goes through his day.  He loves his brother and sister more than anything else in the world.  He loves to sing and bang on the piano.  He loves his sign language videos.  He loves our chronically misbehaving beagle, Lucy.  He adores a good dirt pile full of dump trucks.  He doesn't seem to worry at all about what others think about him.  He loves to wrestle with dad and get tickled to pieces.  He begs daily for a "nice, warm bath" with his siblings before bed.  Perhaps my favorite thing about him is that he loves to curl up on my lap and read book after book after book.

I wish life was easier for Matt-man and that he didn't have some of the medical issues (such as the growth hormone deficiency, recurrent ear infections, hypotonia, feeding difficulties) and sensory processing issues that come with his syndrome, but I am conflicted on whether I would ever want him to be fully "cured".  So many of the things that we have come to love about him are intrinsically tied in with the 15q24 microdeletion syndrome.  He just wouldn't be our same little Matt-man without these traits.

Pray that he would continue to improve on his toileting and communication skills and his other activities of daily living; pray that God would continue to give us patience and understanding as we deal with all of our children each day; and pray that God would continue to use Matt-man to make a positive difference in the lives of all of those around him in his own unique way.

Matt-man, age 4 1/2 yrs

Happy Autism Awareness Month!

Today is the last day of April, which seems to have been “National Awareness Month”.  Folks were encouraged to wear blue and green on April 19th to recognize Organ Donation.  It was dubbed “Child Abuse Prevention Month” as well.  Additionally, it was “Jazz Appreciation Month” according to Toledo’s 88.3 WXTS - Real Jazz For Those Who Feel Jazz!  

It is also “Autism Awareness” month.  While I think organ donation, child-abuse prevention and Jazz appreciation are all causes worthy of your attention, I have a particular vested interest in Autism, which is also worthy of your attention.  In keeping with the “awareness” theme of April, I would like to make you “aware” of some things.

My son, Matt-Man, was diagnosed as Autistic in December of 2011

My son, Matt-Man, was also diagnosed with a rare genetic syndrome called “15 q 24 Microdeletion Syndrome.”  If I may bore you with some genetics, everyone is born with 23 pairs of chromosomes.  Those pairs are numbered.  On Matthew’s Chromosome 15, he is missing 9 genes (they have been “micro-deleted”) on the “q” arm of the chromosome.  It is not likely that 15 q 24 causes Autism, but neither are the two mutually exclusive.  Among other medical conditions (growth-hormone deficiency, 15 q 24 Microdeletion Syndrome, and those lady-slaying handsome blue eyes) Matt Man is also Autistic.  

A very ugly misconception regarding Autistic kids is that they are stupid.  More than a few times in the last few months I have had different people (all of whom I suspect had good intentions) tell me, “Did you know Matthew can talk?”  This usually comes after they have babysat him for an hour or so, having only previously unconfirmed misconceptions about what he is capable of.  

The sarcastic adolescent buried deep inside me wants to make a smart-aleck comment like, “Are you kidding me?  He only grunts and burps when he’s at home.  It’s a Festivus Miracle!”  The short-tempered Irish guy inside wants to throw a brick and say, “I know he can!  What!  Do you think he’s stupid!?  I’ll show you stupid!!!”  Yet, the polite pastor inside of me, remembering what it was like to be unaware of an Autistic kid’s potential, quietly says, “Yup, he sure can!”

Truth is, he is incredibly smart.  One of the reasons I don’t get ugly when people are genuinely surprised at his intelligence is because sometimes he takes us by surprise too.  He has an impeccable memory.  Quite often, we will hear him singing a song that we didn’t teach him, only to find out it is a song he has only heard once.  I also have a feeling he has perfect-pitch—he is quite a remarkable singer.  He is an adept problem-solver and also very preceptive.  

Another ugly misconception regarding Autistic kids is that they are unemotional, or that they have no feelings.  Indeed, he may be oblivious to social and emotional cues of others, but he does have feelings.  He knows what he likes and he knows what he hates.  He likes Tonka trucks, bacon, Chick-Fil-A, and gets excited when he sees his teachers and friends from school.  He loves piano, but he doesn’t like dad playing piano when he wants it all to himself (he has often pushed me off the piano bench saying, “Daddy, do you want to leave?”).  He doesn’t get excited by some of the same kinds of things that excite other kids, but he loves what he loves, hates what he hates, and is passionate about many things.

Whereas most people might be able to tell if someone else is sad or angry simply by reading facial expressions, such non-verbal cues might be completely missed by Matthew.  However, he does understand that crying and tears equal “bad”, and when he hears his sister crying, nobody has more empathy than our son.  He is usually the first to her side, saying, “Audrey, are you okay?”  He is also quick with hug and a kiss to her forehead to make her all better.  On the other end of emotions, he loves to laugh and he loves to make others laugh too.  Our little comedian will do something that his siblings think is funny and will do it again and again until someone inevitably pees their pants.  

Matthew is still a kid like other kids.  He loves cars and trains.  He loves his trike.  He especially likes to ride his trike at full speed, crashing into our car.  He likes sitting on our laps with a favorite book.  He loves “Good Night Moon” and still to this day laughs hysterically when he gets to the part, “Good night, nobody!”  Like other kids, he loves junk food and hates vegetables (and as his parents, we don’t let him off the hook until he eats his vegetables too).  He loves the playground: running, sliding, swinging, climbing, falling, and getting dirty.  And like other kids, he often throws a temper-tantrum when it’s time for bed.  

He has grown exceptionally well over the last year, but so have we.  For instance, it is futile to attempt to get him excited about some things he genuinely doesn’t care about.  If I find something interesting, I can tell my neuro-typical 6-year old, “Hey, come look at this!” and usually he finds it interesting too.  I cannot do that with Matt-Man.  If I find something interesting and tell him, “Hey, come check this out!” he might come, but loses interest very quickly.  Instead, we have learned that instead of him joining us in the things we find interesting, we need to join him.  

For instance, he gets lost in cars, driving them in circles atop the ottoman in the living room.  Nothing we do can divert his attention away from those cars.  However, he loves it if we also grab a car and join him on the ottoman and ask, “Where are we driving?”  Then we can say, “Hey, let’s drive to the grocery store,” and on hands and knees, as we drive our cars to the kitchen, he will follow us and help “pick up” imaginary groceries from the fridge.  Then it’s off to the bank so he can get a sucker!

If you know an Autistic kid (like mine), I wouldn’t recommend trying to divert their attention from the things they love.  Instead, join them in those things, and try to expand those things a little at a time.  If the kid (like Matt-Man) likes driving a Hot Wheels “to school,” “go to school” with him, and then encourage him to “drive to the bank”, or to race.  

And if you know an Autistic kid, let him or her play with your kids.  We have had stellar therapists providing wonderful programs for Matthew’s continual development, but they work much better when Matthew is modeling neuro-typical peers, seeing what they do and copying it, hearing what they say and repeating it.  Matthew’s progress explodes when he is able to model other kids, and those other kids benefit too from being able to accept and interact with kids who are very different from them.  

Matthew is different, there is no hiding that.  But he is also very smart, very funny, very kind, very sweet, and has as much potential to succeed in life as any other kid.  Even with all the challenges afforded to us by Autism, 15 q 24 Microdeletion Syndrome, Growth Hormone Deficiency, and those lady-slaying handsome blue eyes, our family is better off in every conceivable way because God gave us Matthew.  And so with that, you have just been made “aware.”

Happy Autism Awareness Month!

The Medical Saga Continues

We recently had to go through growth hormone stimulation testing with Matt-man.  His height percentiles have been steadily dropping over the past few years (from about the 80th percentile down to the 3rd percentile).  In the last year he grew an inch at most (should be growing about 2 1/2 inches per year).  He also is extremely delayed in developing muscle mass, which we assumed was due to the 15q24 microdeletion, but it is also a very common symptom of growth hormone deficiency.  He really just looks much younger than the other 4 year olds we know.

We finally heard from the endocrinologist yesterday (13 days after his testing) with his final results.  It turns out that Matt-man is indeed growth hormone deficient.  I don't really know if this is good news or bad news.  I am SO glad to have more answers.  I want to provide him with the best care possible, and we need all of the information to be able to do that.  The good news is that we now know why his growth and physical development seems to have significantly slowed down over the past year.  We can now help him by providing daily injections of growth hormone to replace what his body isn't producing.  It will not be fun, and there are possible side effects of the medication, but the risks of not replenishing his growth hormone are greater.  Without growth hormone his bones will not grow like they should.  He won't metabolize fat and sugar like he should.  He will always have poor muscle mass and low stamina.  He is more likely to develop high cholesterol and die from heart disease.  It is good news to know that we can treat him and prevent these things from happening down the road.

The bad news is obvious - he has just been diagnosed with another chronic disease.  He will at least need daily injections through puberty, and there is a chance that he may need to continue them throughout his life.  Nobody wants this for their child.  A part of me was hoping that not growing was just a part of the 15q24 microdeletion syndrome and that he would be completely healthy in spite of his size.  Also, growth hormone injections are atrociously expensive.  My understanding is that at his weight (about 33 lbs), the weekly cost of his medication at retail prices would be in the $400 range.  This will increase as he gains weight and grows.  I am grateful to have good insurance right now and have been reassured by an endocrine nurse that there are several options available to provide financial assistance to those that cannot afford growth hormone therapy if we ever find ourselves uninsured in the future.  Right now we are awaiting insurance approval before we can start therapy.

Please keep Matt-man in your prayers.  He is such a sweet soul, and he will not understand why he is getting shots everyday.  Please pray that he will respond well to the medication with minimal side effects.  Pray that Danny & I will have the patience and understanding to be better parents to all of our children through all of the unexpected challenges that have arisen over the past couple years.  Loneliness and discouragement are a constant threat.  Thank you to all of you who have come alongside to support and encourage us in this journey.

Matt-man going through the arginine and insulin stimulation testing for growth hormone deficiency

"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."

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!

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