Hope

This week went so much better than the entire last month.  Keep those prayers for Matt-man coming.  The tantrums that have been our multiple-times-per-day frustration were almost non-existent.  He was happy and giggly most days actually.  At least 4 times in the past few days he actually told us exactly what was wrong instead of melting down.  I have been completely blown away.  That boy never ceases to surprise and amaze me!  I really hope this trend continues.  I'm clinging to the hope that as time goes on the good days will really start to outweigh the bad days.

Matt-man, 5 yrs old. Photo copyright of Portrait Innovations.

A Glimpse of Real Life

I don’t think many people really understand the cycles of grief that come with raising a special needs child unless they themselves have lived it.  It is a strange thing.  It comes and goes in spurts and often rears its head in very unexpected moments.  These past couple weeks it has hit me hard again.  Our family is extremely blessed to have Matt-man in it, and I wouldn’t trade him for the world.  He is a source of much joy and laughter in our home, but right now I just need a place to vent a little about some of the struggles we are going through.  

I hate what autism and 15q24 have taken from Matt.  He has to work so much harder than any of his peers or siblings to learn the simplest tasks of life, and there are some things that he may never master.  I don’t want to sound like I’ve given up or lost hope, because I haven’t, but the reality of how severely delayed Matt-man really is has finally started to sink in.  Yes, he is continually making small steps in his development, but the disparity between him and other kids his age continues to get greater and greater as he grows older.  This is really difficult to swallow.  

My 7 year old, Nathan, and 2 year old, Audrey, play and talk together all day.  They sometimes try to involve Matt, but he just doesn’t understand how to participate without a lot of prompting and assistance from me or Danny.  The way his siblings play just doesn’t seem to make sense to him.  They engage in quite a bit of play that requires a very active imagination.  For example, tonight they were making a special stew for worms using grass, sticks, leaves, acorns, garden herbs, etc.  I don’t think Matt had a clue what they were doing.  He was happy to roll a truck back and forth for an hour.  That is the kind of play that makes sense to him.  There are other times where I think he would participate if he could, but his fine motor skills prevent him from doing so.  Nathan and Audrey spend a lot of time building legos.  Trying to manipulate legos is very difficult and frustrating for Matt-man.  He would prefer to be off by himself doing something that makes sense to him – like rolling cars back and forth or hanging upside down off of the couch.

He can carry on very basic conversations about his immediate needs and wants, but there is very little meaningful conversation beyond that.  He couldn’t tell you his favorite color or favorite food.  He has a difficult time answering the question “what did you do today?” because he still doesn’t understand the abstract concept of time.  Words like today, tomorrow, yesterday, this week, next week, etc., are just that…. words.  They don’t seem to hold any real meaning to him.  He is smart enough to know that a question was asked so he responds with one of his memorized sentences, which may or may not make sense in the current context.

One of the biggest things we are struggling with right now is that he has started having crying spells.  Now by crying spells I don’t mean a little tantrum; I mean he cries hard for at least an hour until he is physically worn out and cannot be comforted.  Throughout the crying spell he will periodically start laughing his head off for no apparent reason and then go back to crying.  All we can guess is that some point in the tantrum he must decide that the sound or sensation of crying is funny in some way. Sometimes there is an obvious trigger to the crying spell, but many times he starts crying for apparently no reason and we can’t figure out for the life of us why.

The other big struggle we are having with Matt-man is the constant fear of elopement.  When he is not at school, we have to watch him pretty much every second of the day for fear that he will take off on his own. I do not think this is an intentional desire to “run away” per se.  I think it is a matter of wanting to explore the world and being completely oblivious to the things around him as he does.  He has learned how to unlock our front door handle and deadbolt, but that door is pretty loud so we have learned to very quickly check the door if we hear it open.  The back door opens into a fenced in yard with a padlock on the gate, so I am less worried about him sneaking out the back.  Honestly, it is much more difficult when we are at a friend or family member’s home.  Instead of just relaxing with friends/family, we spend the entire time stressing out about our child getting away unnoticed.  Church dinners are just awful for this same reason.  They are usually held in the gymnasium, which has multiple emergency exits.  If I take my eyes off of him for a minute, he often has disappeared.  He has gotten out of the building unnoticed more than once, which is very scary considering the church is on the corner of 2 fairly busy streets.  I worry less about my 2 year old because she has a healthy fear of the unknown and always returns to mom or dad or cries for assistance.

Matt-man is only 5, so I honestly have no idea what life still has in store for us.  He could make some unimaginable gains with continued therapy and blow all of us away.  I really hope this is the case, but I am preparing myself for the very real possibility that Matt-man will always need to be in the care of his family.  Nathan recognized this a long time ago and has said for a while now that his brother will live with him when they are grownups.  

Please keep us in your continued prayers.  We really do covet them.  We are doing the best we can with God’s help, to raise all of our children right, but this is done with a lot of stress, exhaustion, and the guilt that we aren’t doing enough.  I am thankful for the little bits of encouragement that come along just when we need them.  Just this week my oldest son, Nathan, prayed and thanked God that we have such a happy life.  We must be doing something right.

Won't You Give My Kid His Genes?

In the last five years, I have learned more about genetics, hormones, and behavioral therapy than I ever knew existed.  At 3, our son Matt Man was diagnosed as Autistic.  Shortly thereafter, he was diagnosed with a genetic syndrome, 15 q 24 Microdeletion Syndrome.  In short, he is missing 9 genes.  He was also diagnosed as having a growth-hormone deficiency.  

Evangeline and I are doing what we feel are all the right steps.  He is in a behavior program, and will be starting a Developmental Kindergarten program this fall.  We have also been blessed to give him hormone injections over the last six months (to continue in the future indefinitely), and the difference that has made has been remarkable.  

Yet, for as far as he has come, and for as far as anticipate he will continue to go, there are still many moments where our frustration and mental/emotional exhaustion levels go through the roof, things that if he were "neuro-typical" we most likely wouldn't have to deal with.  (Evangeline recently saw a research article which said the stress levels of a mom of an autistic kid are about the same as an active-duty combat soldier).  

So I must admit, I got a little irritated recently when I heard a preacher on the radio lecturing parents of special-needs kids about how we need to understand that God made those kids, "knitted them in the womb" with special needs and all, and therefore we should value them like any other kids.  To give him the benefit of the doubt, I think he was trying to convey the idea that children, regardless of physical, social, or mental ability, are a gift of God and they need to be cherished as such.  It came off, however, as him saying, "You need to just accept the fact that God intentionally made your kid deficient for whatever reason, and you simply need to resign yourself to that."  

Which got me to thinking about Mark 2.  There Jesus spoke at a full house, so much so that the line of people trying to hear him extended out the front door.  Four pushy guys with a paralyzed friend on a mat shoved their way through the crowd, and when they realized they couldn't get in either, they went up to the roof, ripped it open, and dropped the guy through the ceiling to Jesus' feet.  Jesus' initial response was to forgive the guy's sins, and afterward, heal his paralysis.  

And there are a plethora of other examples where Jesus encounters people who have physical needs and he heals them.  Blind people see.  Deaf people hear.  Crippled men gain strength. Even ol' Lazarus was raised from the dead.  And the list goes on.

Back to Mark 2, on the one hand, Jesus' exchange with the paralyzed man proved a point to the Pharisees in attendance.  Namely, Jesus DOES have authority to forgive sins, which in turn speaks to his divine character.  Yet the man is far from simply being a theological prop to prove a point; Jesus genuinely has compassion on the poor guy.  Not only that, he sees the faith his friends have, that if only they could get him to Jesus, He could heal the paralysis.  

I like to speculate as to the reason why the four men came to Jesus in the first place.  They brought their friend to Jesus because they thought Jesus could help.  But even before that, the notion of any man being paralyzed was, in their minds, unacceptable.  Perhaps this paralyzed man was even "knitted" in his mother's womb that way.  Perhaps the man was destined to be crippled from the time the egg was fertilized.  Even so, on some level, his friends determined that being crippled was unacceptable.  The fact that Jesus would help him suggests that even our Lord agreed.  

Not only that, but blind men begged healing from Jesus because blindness is unacceptable.  Deaf ears are unacceptable.  Crippled limbs from birth are unacceptable.  Even death is unacceptable.  In the same way that all these things are unacceptable, I wonder if nine missing genes is also unacceptable.

So you see, mister radio preacher, our son has a special need, and we see him as a gift.  We love him and adore him and cannot imagine our life without him.  But a blind man asking to be able to see is not unreasonable, even if he was "knitted in the womb" that way.  It is not unreasonable for a deaf man to ask Jesus to open his ears.  It is not unreasonable for a crippled man to ask Jesus to heal his limbs.  It is not unreasonable for a paralyzed man to ask Jesus to let him get up and walk.  So again, I wonder if it is too unreasonable for me to ask Jesus to give Matt Man the genes he is missing.  

The tricky part is understanding that IF Jesus were to give my son his genes, Matthew would not be the same kid.  For five years, we have gotten to know and fall in love with this particular kid as he is.   Would I be willing to trade who he has become for the kid he would be, if only he had those 9 genes?  

Maybe I would.  For as far as he has come, and as far as we anticipate he will go, he will nevertheless live a very difficult life.  There is a good chance he will need to continue taking hormone shots for the rest of his life.  There is a good chance he will always have difficulty making friends.  There will be a good chance that all of the things that come so naturally to most people, things we take for granted, will always be foreign to him.  All because he is missing nine measly genes.  If Jesus could raise ol' Lazarus from the dead, certainly he could give my son those genes, right?

In conclusion of my little exhaustrated rant (no, I didn't misspell that word), here are some things I've come to know.  I don't speak for all parents of special-needs kids, but to some degree, we might all agree:

1. We know what a special gift our son is.  Even if he was "knitted in the womb" with nine missing genes, we love and adore our little dude.  We cherish his life, and if we had to go back and do it all over again knowing that he would be born missing nine genes, we would not change a thing.  Frustrations, complications and all, we love our little Matt Man.  He could be missing ninety genes and we would love him all the same.  We love Matthew to the same degree that we love our other children; not more, and certainly not less.

2. Loving and accepting who he is does not mean we don't secretly wish things were different.  If Jesus were to appear today and say, "Here are those nine genes.  Do you want me to put them in?" it would be hard to say, "No."  If paralysis, blindness, deafness, and crippled-ness are all unacceptable, perhaps so too is missing nine genes.

3.  Parents of special-needs kids don't need a lecture about how we are supposed to be grateful for the gift God has given us, how we are supposed to value our children like any other parent values his/her child.  We already know that.  

4.  We want a safe, non-judgmental place to vent our frustration when we have a tough week; non-judgmental ears that will hear us without giving any advice.  Some place like a dumb ol' blog.  

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!

Growth Hormone Update after 2 Weeks

Well, we have survived the first 2 weeks of Matt's growth hormone injections.  They are going surprisingly well!  He seems completely unfazed by the shots, and hasn't cried a single tear over them.  This is a huge relief.

I did not expect to see any effects of the shots this quickly, so I was blown away by what we did see. Matt-man finally has energy!!  It's almost like he's coming out of this chronically tired, unfocused, foggy state.  He is way more active at home and a lot more focused when you interact with him or help him work on little tasks.  He actually came running to the door to greet me when I got home last night from work.  He never does that!  He has also been talking and laughing more than usual the past couple weeks.  Matt-man genuinely seems happier.

I am so hopeful that Matt-man's new energy levels will help him make even greater strides in his development and learning.  It must have been extremely difficult to spend so many hours in therapy each week with being tired all the time.

Most people think that growth hormone injections just make a child grow taller.  I had a great discussion with an endocrine nurse this week, and she told me that it is actually very common for parents to report massive increases in their child's energy levels with growth hormone shots.  I hope things continue to go this well!!

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