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