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

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.  

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.

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

Emotions

It really is remarkable how many conflicting emotions we have experienced over Matt's diagnosis.  For me it started with denial followed by deep grief over the loss of what MY hopes and dreams were for my child.  I worried that he would always be stuck in his own world and never have deep meaningful relationships with others outside of his own family.  This was mingled in with fear - will he ever be able to live independently?  I have so much uncertainty about what the future holds for him or our family.  Mingled in with these emotions was a deep sense of relief that we finally knew what was going on with our child and could understand him a little better, and help him be the best that he can be with what therapy is available at this point in time.

I am at the point now where I have accepted the diagnosis and have discovered a lot of joy in being able to relate to my son a whole lot better than I was before when I expected him to be "normal".  I am much more sensitive to his subtle cues than I ever was before.  We do have a lot of very hard days.  Days when he cries a huge portion of the day and can't tell us why in spite of our best efforts to break through to him.   Days when he hums or sings to himself all day and gives us zero eye contact.  Then suddenly, something will strike him as funny and his blue eyes look deep into mine and his whole face lights up in the most beautiful smile.  I love catching these glimpses into his world.  There is so much more to Matt than he lets on. 

Those who know me well, know that I am not prone to outward displays of emotion - Matt gets some of his introverted nature honestly - but sometimes I am caught off guard by somebody who is particularly kind and caring in their question of "how are you doing, really?"  These are the moments that I want to break down and cry right there.  I can't summarize all of my emotions, but the fact that they truly cared and wanted to know is enough to make my day.

My husband, Danny, is not prone to outward displays of emotion either.  I've known him for 10 years and can count on one hand the number of times I've seen him cry.  He is absolutely right in his statement that the label of autism doesn't change who Matt is, and it just helps us know what to do to help him.  Even he has been affected by some unexpected cycles of emotion though.  It hit him in the sports aisle at our local department store that Matt may never be able to play a game of catch with him.  That was when the tears came for him.

My son, Nathan, is 5 years old and has had a rough time figuring this all out.  We tried to explain what autism was to him, but it's difficult to explain to a 5 year old.  We told him that Matt's brain works a little differently, that he's a smart kid, but he just has a hard time with a lot of things that come easy to the rest of us.  At first Nathan thought that autism was contagious - he didn't want to sleep in their shared bedroom for fear that he would catch it.  He also wanted to know if you could die from autism.  This was heartbreaking to hear, but I gently explained to Nathan that autism is something you are born with, that is just means your brain works a little differently, and that no, people do not die of autism.  In a typical kid-like fashion, he rebounded from these emotions within minutes and was fine sharing a room with his brother again.

I've found him to be a lot more patient and protective of Matt than he used to be.  He also has a lot of pride in his voice when I hear him tell other kids that "my brother has autism, his brain works different".  One thing that really seems to have helped him is enrolling him as a "peer buddy" in the autism school that Matt is attending.  He is interacting with kids his own age with mild to severe autism, and seems to be a little better at understanding that different is okay.  He has one buddy at school who runs up to hug him whenever he sees him, and I've seen them walking hand in hand at school.  I really think Nathan is already an awesome brother to Matt and will only get better.  He actually fights more with his 7 month old precocious baby sister than he does with Matt!

Audrey will grow up accepting autism as a part of daily life; she won't know any different.  At 7 mos old she is always crawling over to Matt and joining him in whatever he is playing with.  I actually think it has been great for Matt to have a baby sister.  She clearly loves him, and it is much harder for him to retreat into his own world and perseverate on a task when baby sister is crawling all over him and stealing his toys.  He seems to have a very soft spot for her already.

There will be a lot of ups and downs with autism, but this happens with parenting anyway.  Right now the difficult days seem to outweigh the really good days, but I am confident that as we grow in our role as parents and as Matt gets the therapy he needs, that the balance will shift.  I feel incredibly blessed with the family I have been given and would not trade any one of my kids for the world!