Matt-Man's Going to Summer Camp!!

Matt-Man works harder than any other 6 year old I know.  In fact he's been forced to work hard since starting therapy full-time as a 3 year old.  He has to.  Simple tasks of daily living and communication are not simple to him.  He has had to invest many hours to learn each task of life slowly and as a whole series of smaller tasks.  Matt-Man doesn't get summers off.  He spends his summers in therapy or summer school, working hard all day.  Well, this year will finally be different.  For the first time ever, Matt is going to summer camp!

The Special Recreation Association in our area provides a summer day camp that is specifically designed with autistic children in mind.  The days are carefully structured and aides are available to help the campers out.  He will spend his days enjoying music, art, games, socializing, and swimming and his evenings at home with us.

We are so thankful for this opportunity.  We are considered non-residents of the districts served by this camp and had to remain on the waiting list until all residents had registered, praying that there would be a spot left for Matt-Man.  We were ecstatic to get the call that he was in.

Please pray that this is a good summer of fun and growth for him.  Matt-man has very few friends.  Not because he doesn't like other kids but because he doesn't know how to interact with them appropriately.  I've often watched him try to initiate contact with other kids his age only to get funny looks and be ignored.  I would love to see him develop friendships and better social skills this summer!

Matt-Man with his baby brother.  He is becoming a good playmate!

What's Helpful, and What Isn't

What often happens with blogs is that one writer assumes the duty of speaking on behalf of an entire community, even when the community hasn’t granted that one the authority do to so.  For me, whenever I see an Evangelical Christian saying on behalf of other Evangelical Christians something I would never say (like, Vote For ....), a small part of me throws up on the inside.  

So in what follows, I do not presume to speak on behalf of the entire community of special needs.  Our reason for writing this blog is very narrow: we want a place to share our personal experiences, and for you to get to know Matthew.  I am not the voice of authority, so please do not interpret this as “What All Dads Of Special Needs Children Want You To Know.”  We are hardly experts on Matthew, let alone the entire world of Autism and 15q24. 

When people hear we have a special-needs child, there are various responses.  Very few of them are intentionally hurtful and bigoted, and I refuse to dignify those by writing about them any further.  Most of the responses are wrought with good intentions, even if those good intentions fail to land.  Some offers of advice, comfort, or encouragement I have found to be a little less than helpful:

• You have a son with Autism?  Oh, my sister’s husband’s uncle’s neighbor’s son has Autism too (I appreciate the attempt to relate, but even my experiences with Matt are different from another dad’s experiences with his kid. Don’t pretend you know what it’s like)
• There’s no such thing as “normal” (When my 14-month-old has better fine-motor skills than my 6-year old, that’s not normal)
• Someday you’ll miss this (This seems more like an attempt to guilt me into enjoying the harder parts of parenting. It may be true, but is entirely unhelpful in the present)
• Have you tried this diet/therapy/insert-crunchy-advice-here? (It’s hard enough to dress my kid, let alone research the gamut of fad-diets)
• God doesn’t make mistakes (Really? Then why did Jesus bother healing a man who was born blind in John 9?  Why would he bother healing anyone for that matter?)
• God gave you a son like Matthew because he knew you could handle it (No I can’t)

I have never found any of these to be helpful, but I also recognize these are all given with good intentions.  I have learned to be extra patient because these responses, though they may be unhelpful (and even at times, hurtful) they are nevertheless given with sincere love and a desire to encourage, relate, and even join us on the journey.  So I do not belittle the honest attempts made by good people to stand alongside us.  On the other hand, what follows are some things we, personally, have found to be helpful.

How’s it going?  No seriously, how are things going in your home?  

Just the other day, a friend genuinely wanted to know what was going on and didn’t buy that things were “fine.”  After not letting me leave until he pressed further, I explained to him that life with Matthew is a bit like taking two steps forward, one step back.  This particular month has been “one-step-back.”  The entire time I shared that with him, he didn’t stop looking into my eyes with deep concern.  He didn’t try to sympathize with me but simply gave me the freedom to vent frustration.  And he offered me absolutely no advice, just a listening ear without judgment.  And as a person of faith, I also appreciated his promise to pray for our family, and then the follow-up text messages indicating he was, in that moment, doing just that: praying.

That really sucks!

This phrase I learned from Evangeline when she was gigantically pregnant with our last child.  She was complaining about her feet, knees, hips, and how nothing fit her anymore.  Fresh out of ideas, I offered some trite platitude about how I wish I could help, and suggested she buy bigger clothes.  Instead of breaking my nose, she said, “Danny, all I really want to hear from you is, Evangeline, that sucks!”  Sometimes we’re not looking for help, or answers.  Sometimes we simply need a safe outlet to blow off steam.  

Teach me how to interact with Matthew

Our church is small, but filled with dear people who earnestly want to know how to relate to Matthew in a positive and meaningful way.  So instead of simply giving up and shuffling him off into a corner with a tablet, they ask.  Matthew was doing this in class; is that normal?  If he starts to do that, how do I respond?  What can I do to make sure he gets the most out of this class?  Nothing is more encouraging to us than people who love Matthew enough to go the extra mile to make him feel special.  

Why don’t you let me take the kids for the weekend?

Honestly, sometimes our life feels like a prison sentence: hard labor under the Special-Needs Warden.  Sometimes just surviving another day is quite literally all we can accomplish.  The routines, doctors appointments, medications, IEP meetings, report cards, and the day to day drag every last ounce of energy we have.  With our other kids, we have complete confidence that they will, at some point in their lives, be self-sufficient contributing members of society.  We sure hope for a great surprise, but with Matthew, we just don’t see it yet.  Will he still be living at home when he’s 25?  35?  Will we ever see an end to this?  Will there be even one day in his entire life where he doesn’t wake up and cry?  Sometimes the burdens get to be too much and what we really need is serenity now!  

What I haven’t found helpful is, If there is anything I can do, just call me and let me know.  Not only do we have the duty to see our children through another day, but now you’ve just given us an assignment.  Far more helpful than the hypothetical If has been when people voluntarily showed up to help without having to be asked.  We have one dear lady from church who periodically says, “I’ll be over tomorrow to help with laundry.”  But she doesn’t just do laundry, she also cleans the dishes, feeds the kids, mops the floor, washes and waxes the car, does our taxes... the list goes on.

All parents, whether they have special-needs children or not, need to remind themselves what it means to be a couple, romantically involved with one another.  Even if just for a few hours in the middle of the day to sit across from one another at Starbucks, what Evangeline and I really crave is a break.

Finally, there are all the other things people do to support us from afar, even if it doesn’t directly impact our family.  Evangeline has sisters who have sat their own children down and explained Autism to Matthew’s cousins, hoping they will understand him a little better and be able to relate to other special-needs children in their own communities.  My younger sister donates her time and energy to a local fund-raiser (shameless plug for Project iAm), raising money and awareness for Autism in Toledo.  And that’s only a few of those who have done whatever they could even from afar.  Parents, siblings, cousins, aunts and uncles and countless friends have all done things that, even if they haven’t directly benefited us, are nevertheless far more meaningful than suggesting there is no such thing as normal.  

Again, I’m not presuming to speak for the entire community of parents of special-needs kids.  These are simply things Evangeline and I have found helpful, contrasting with those we haven’t.  Maybe some special-needs parents actually like hearing, “Someday you’ll miss this.”  If you miss it so much, you are free to take my kids to your house so I can have an uninterrupted nap.

Items carefully lined up are a very common sight in our home

Interesting Stuff About Matt Man: Excessive Rigidity To Routine

Wake up at 6:15 AM.  Immediately undress and put on school clothes.  To the kitchen for Aldi-brand mini-wheats, a fried egg with hot sauce, and a cup of milk.  Brush teeth, shoes on, fill the backpack with the red folder and lunch box.  Coat on, hat on, backpack on.  Stand on the chair to see when the bus is coming followed by the announcement, “The bus is rolling,” when it makes it’s approach.  A giggly sprint to the bus, two steps up, “Good Morning,” and taking the same window seat, off he goes.

Bus returns at about 3.  “See you tomorrow,” two steps down and an immediate request for five animal crackers: not four, nor six, but five.  A brief period of playing outside or reading Berenstain Bears.  Half an hour of, “Daddy’s cooking chicken for dinner / You can have dinner in 10 minutes / I can wait patiently for chicken.”  Dinner, then homework which is motivated by five chocolate chips - not four, nor six, but five.  

Bedtime begins with a “pokey-poke,” the daily injection of HGH which he always assumes is going into his right belly.  Go potty, change into pajamas, Flovent, brush teeth, a quick prayer, and then get tucked into bed.  

Wake up at 6:15 AM and do it all over again.  Same thing every day.  This is what Evangeline calls Matthew’s excessive rigidity to routine.  Matthew, like other kids with Autism, loves strict adherence to a routine; in fact, he thrives on it.  Knowing what is coming next is the closest thing to a security blanket Matt-Man needs.   

We all have a routine.  Generally, my own day follows a typical pattern that starts with coffee and ends with a few strums on my Fender.  But if my daily routine, no matter how structured, is somehow interrupted, there is a high degree of probability that I will be able to roll with the change.  You may be the same way.  A deviation from your routine may be annoying but won’t ruin your day.  If Matthew’s routine gets interrupted, the hot sauce may literally hit the fan.

In general, Matthew likes to make his world smaller.  He often has a hard time relating to and understanding the world around him.  He does not intuitively interpret social cues.  His sensory input is often times out of whack.  To make matters worse, when he stims or perseverates or senselessly echoes what he hears, so much of the world doesn’t understand him, which multiplies the frustration.  The number one coping mechanism for Matthew is to make his world very small and very predictable.  

This is why he loves routine.  There is comfort in knowing what is coming next.  There is so much comfort that when he doesn’t know what is coming next, it makes him very anxious; perhaps a little violent.  

Here is an example of how attached he is to his routine: Our two older boys have swimming lessons every Tuesday.  One day, traffic was a little heavy on the ride home, so I took a different route down a side street.  Since the new route was not part of his normal routine, Matthew had a complete meltdown that ruined the rest of his day.  

This is also what makes snow days an absolute nightmare.  Most kids pray for a huge blizzard that paralyzes the city.  Those end up being lazy days full of cartoons, sledding, free play, and no homework.  If Matthew is expecting the bus, and the bus doesn’t come, his marriage to his routine refuses to let him simply enjoy the impromptu day off, and the pancakes hit the fan.

We combat this by trying extremely hard to prepare him for what’s coming next.  If we are going to take a family trip, we begin to tell him about at least a week in advance.  If we know there will be an off day at school, we will tell him, “No bus on Friday, we’re staying home.”  If there is any foreseeable deviation from his routine, we try to inform him as soon as possible and then try our best to give him a routine in it’s place.  And if tomorrow is a snow day, you'll know why our kitchen is covered in pancakes and hot sauce!

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.

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

A Reflection on Having a Brother, from Dad

I have a brother, two years younger than me.  Growing up, we were close enough in age that we played well together.  And as with most brotherly relationships, it would all begin by me shooting him in the face with a Nerf gun or him hitting me in the face with a playground ball.  Either way, one would provoke the other and the game was afoot.  

Together, we did everything that boys typically do together.  We fought with each other.  We fought other boys in the neighborhood together.  We played sports together.  If there wasn’t a sport to be played at a given moment, we made up our own games -- still do.  Once on a rainy day, we commandeered the living room and played an entire tennis championship, volleying a paper wad back and forth with our hands on our knees: the walls were out and a strip of tape on the carpet was the net.

We had our friends, but when friends were unavailable, we had each other.  From the moment he could walk until the day I moved out of the house, that was our relationship.  Still to this day, one of us can expect to get hit by the other in the back of the head with a snowball in my mom’s kitchen on Christmas.  

Evangeline’s brothers are similar to that: close enough in age that they were simultaneously each other’s best friend and mortal enemy.  In fact, most brothers who are close in age like that might say something similar, though the nature of play between sets of brothers may vary.

So when we gave birth to our second son, we had stereotyped visions of what our sons’ relationship would look like.  Our boys would ride bikes together.  They would play catch together in the yard.  They would chase girls with worms together.  On a rainy day, they would play games, or make up their own games together.  They would hate each other at breakfast and join forces to torment their sister before lunch.  They would have that typical brotherly relationship that I had with my brother.

And so, grief confronted me at a rather surprising moment this morning as I compared my experience as an older brother with Nathan's.  Nathan and Matthew are as far apart as I am to my brother, yet their sibling relationship is significantly different from ours.  All Nathan wanted to do this morning was have a sword fight with Matthew in the living room.  If my brother and I had light sabers when we were kids (we weren’t the biggest Star Wars fans), I could have taken the red one, chopped my brothers’ arm off, and expected him to pick up the blue one and fight back.  We might have broken a lamp or a window or a bone in the process, but the risk would have been worth it.  

All Nathan wanted to do was play with his brother.  All he ever wants to do is play with his brother.  So he took a light saber, chopped Matthew’s arm off, and tried every trick in the book to get Matthew to chop his arm off too.  “Chop me, Matt!”  “C’mon, hit me right here Matt!”  “Matt, I’m Darth Vador and you’re Luke Skywalker!”  “Let’s have a sword fight!”  

Matt just doesn’t get it.  

He stands there not knowing what to do.  He holds a light saber up, like Nathan tells him to do.  He stands there while Nathan attacks him (Nathan is a great big brother; his “attacks” are pretty tame).  And there is just no response.  No fighting back.  No chopped arms.  No laughing together.  No joining forces against their younger sister.  Eventually, Matt drops the light saber and finds a car to drive on the couch like he always does.

This is typical.  “Let’s play soccer,” Nathan says.  So he kicks a ball toward Matt, and Matt just lets it roll on by.  “Let’s play basketball,” Nathan says.  But Matt doesn’t dribble or shoot or play defense; not because he can’t but because he just doesn’t get it.  “Let’s shoot each other,” Nathan says.  So he takes a gun, puts another gun in Matt’s hand, shoots Matt, and Matt simply drops the gun to go drive a car on the couch like he always does.  

Nathan often tries play with Matt on Matt’s terms.  Some days, there is little success, but even on a good day, their relationship is far from reciprocal.  As desperately as Nathan tries to play with Matt, it just doesn't happen.  Honestly, I would give a kidney if it meant I could replace a window they broke during a sword fight in the living room.  

I suppose the silver lining is that while I know what Nathan is missing, he doesn’t.  I have to believe that when he is an adult, he will be more well-rounded because Matt is his brother.  But in the meantime, it is hard to hear Nathan say, “Matt, try to chop me!” and see Matt just drop the light saber and walk away.  

Certainly not all brothers have the kind of relationship that I had with my brother, that my dad had with my uncle, that my brothers-in-law had with one another.  Some brothers were too far apart in age to have any kind of meaningful relationship.  Other guys grew up with no brothers at all.  And you might be tempted to say, “Yeah, well Nathan will have a different kind of relationship with his brother and will be better for it.”  That’s certainly true.  And maybe it isn't fair for me to impose on my boys the kind of brotherhood I had with my brother.  But what I saw today made me grieve.  All Nathan wanted this morning was a sword fight with his brother; something Autism has taken away from him.  

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!

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

Hanging in there

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

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

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

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

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

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

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

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

15q24 Microdeletion Syndrome

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

Thank God for good friends!

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

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

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