Interesting Stuff About Matt Man: He's "Sense"-ational!

Once in a while, you come across a thing in life that you didn’t know was a real thing until you met someone who had that thing.  Not that you scoffed at that thing, you just weren’t even aware that thing existed.  Sensory Processing Disorder is one of those things.

The completion of even life’s most mundane tasks requires all five senses and their ability to communicate with your brain in a way that produces appropriate responses.  If you touch a hot stove, the heat on your fingers travels through the nervous system to the brain which sends back to the hand the impulse to pull the hand away from the heat.  The brain also sends the impulse to your mouth to speak “French”.

Sensory Processing problems happen when sensory inputs get log-jammed somewhere in the nervous system, prohibiting an appropriate response.  Many children with Autism either under-respond to stimulus (their hand could be on fire and they wouldn’t know it) or over-respond (a slight change in temperature is literally painful).  The inability to appropriately respond to stimulus makes things like balance, physical touch, eating certain tastes and textures, and general performance of simple tasks rather difficult.  

Like many other kids on the spectrum, Matthew over-responds in some areas and under-responds in others.  Sounds are things that he can be sensitive to.  If we’re in a crowded place with a lot of hustle and bustle, the noise can be literally painful.  Lights don't usually cause him trouble, but a combination of lights and sounds can cause a meltdown of biblical proportions.  The display of expensive watches at the jewelry counter of a department store has been saved more than once thanks to noise-canceling headphones.  That and a quiet room with the Berenstain Bears is usually enough to bring him peace and tranquility.

On the other side, Matthew under-responds to touch and taste.  For some, just a gentle pat on the back can be painful.  By contrast, Matthew loves a good hug.  If he is really weepy for no good reason, a good squeezie squeezie is enough to recalibrate his system.  In fact, there have been several times when at small gatherings Matthew continually circled the living room and gave hugs to everyone again and again and again and... .  If you are sad and in need of a warm embrace, Matt is your man.

Small wonder, then, that his favorite clothes are his Under Armour.  They are meant to be a little constricting anyway, and when you consider that what he calls his “tight shirts” are two sizes too small, it’s like getting a perpetual hug.  

But by far, his favorite method of sensory input is spicy food.  Taste seems to be a sense that he under-responds to, and we can somewhat realign his taste buds with a little kick.  Matthew single-handedly got his brother to eat our salsa for the first time.  Nathan didn’t even want to try it because it had jalapeños in it.  When I offered it to Matthew, and he had three helpings, Nathan couldn’t be one-upped by his little brother; So he had a whole bowl full, even though he didn’t want to, only to show he was as tough as Matt.  Since then, Nathan is no longer interested in proving a point.

More than loving pancakes, Matthew loves hot sauce.  Frank’s Red Hot’s motto is “I put that (splat) on everything” and Matthew does.  Eggs, Mac ‘n Cheese, toast, chicken, fish, hot cocoa, waffles, pizza, corn on the cob, salsa ... you name it.  Nothing is off limits when it comes to hot sauce (except pancakes).  We even used to feed it to him by the spoonful At His Request.  

The point of all this is, for a child with Autism, or someone who has Sensory Processing Disorder, they may over-respond to some stimulus and under-respond to others.  So if you know an Autistic kid, do not, under any circumstances, give him or her a hug, high-five, or pat on the back until you know for certain they do not over-respond to touch.  If you see Matt-Man, the only thing you can do for him that will be better than giving him a big squeezie-squeezie is if you give him food and put a little splat on it.

Matt Man wearing his favorite shirt

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

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

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.