They Called Him Monster

“They called me monster,” Joel whispered. Tears streamed down his face. My heart twisted and I was angry. Actually, it wasn’t anger, it was fury. The fury made me want to inflict bodily damage on the seven-year-old students that had crushed my son.

My sweet Joel was starting to realize how different he looks.  Born with Goldenhar syndrome, he’s missing a large portion of his jaw bone and other bones within his face.  He doesn’t have a right ear and is hearing impaired in his left ear.  His vision is impaired, so he has a lot of gear strapped to his head. As his mother, I often forget he looks different. I honestly don’t notice his features and it’s not until someone stares or kids call attention to them that I’m reminded.

They called this sweet little boy with Goldenhar syndrome "Monster." Here's what his mom wants you to know about him and his abilities.

We were blessed with Joel when he was 18 months old.  Since birth, he’d been in the foster system and was lucky to have a great foster home.  When we first heard about him, we were told he was considered “unadoptable” because of his deformities.  We were encouraged to google “Goldenhar syndrome” and see if it was something we would consider adopting.  We did not initially receive pictures, but were told to look online at pictures of children with Goldenhar syndrome.  When we said that we didn’t care what he looked like, they allowed me to meet him briefly in a park.  He was beautiful and in my eyes, just perfect.

The day we signed the commitment papers to adopt Joel was sobering.  They took my husband and I into a small room and paraded a team of therapists and social workers through.  Each explained all the problems Joel had.  Then they brought in a stack of papers that was 6 inches high.  We were told that these were Joel’s notes from every hospital, doctor, specialist, etc. that had seen him.  Each page outlined every single thing wrong with him.  I wanted to cry.  I could not imagine how tall my stack of papers would be if they outlined my every flaw.

They left the room and my husband and I looked at each other and we both knew.  We weren’t going to read a single page.  Joel was our son.

Joel has taught me so much about parenting.  I’ve failed more often than succeeded and he is so forgiving.  I’m learning that there is a line between “able”ing my son and disabling him.  Helping him and holding him back.  I walk a fine line between helping him receive what he needs in order to be successful, yet pushing him to achieve in spite of the impairments.  As a parent, I have to be careful to prepare my child to succeed in this world.  And this means that when children hurt my son by calling him “monster,” I have to teach him how to handle it. His whole life, people will stare at him.

The reality is that there are no anti-bullying campaigns in the grown-up world.  I know because I’ve been in public. Adults have actually followed my son around to get a better look.  They’ve asked “what’s wrong with him.” And as a parent, I’ve had to learn to not become instantly enraged.  We’ve modeled with Joel how to tell people why his ear is missing and we also use humor. We’ve had people ask where his ear is and I admit, I’ve furiously searched the floor pretending to look for it.  Joel has an incredible sense of humor and I look forward to watching him handle stares and comments with good humor. I want people to see that my children’s disabilities are part of who they are, but it’s not everything and certainly does not define them.

Special needs is not scary, it’s just what is says.  It’s a person with needs that are different or special.

Many say it’s wonderful that I’m parenting special needs children and I’ll be honest, that statement hurts.  I’ll say this again, never tell the parents of a special needs child that you could never do what they do, or that they are wonderful for parenting their child.  Think about how that would sound to someone whose child was “typical.”  When someone has a newborn, we do not look at the mother and say, thank you for parenting this child, I could never do that.

One of the hardest moments of my life was watching Joel be rolled back for a rib graft surgery.  My heart was in my throat the whole surgery and then I spent six weeks feeding him purees through a straw because his jaw was wired shut.  I carried around wire cutters given to me by the hospital in case he choked. There wasn’t a single moment I worried about my son being a star on the ball field or getting an A in his classroom. No, I was absolutely blown away by his courage and ability to endure such a difficult surgery and recovery. These types of experiences are what have shaped our son into an incredible child, and someday an amazing man.

I want to switch gears and write this next part to special needs parents everywhere.  I see you!  I know you’re scared and lonely. I battle your same fears. It’s often a dark journey that has you fighting for every scrap of sanity and worth you can find.  I’ve asked the same questions in the middle of the night and worried the same worries.  Some of the questions are big and they engulf me.
Will he ever live on his own?
Will he be able to hold down a job?
And then there are the little questions, like persistent little gnats.  Will this firetruck obsession ever end?  Can he stop separating his food and quit sniffing things?  These questions are only answered with time and I try to keep my hopes little.  Like, I hope he doesn’t obsess over firetrucks when he’s 30 and I think the sniffing has almost stopped, at least for today.

I’m writing this stuff about weird nuances and obsessions and I am guessing that you’re nodding. Your child does atypical things and I’m here to say it’s okay to be afraid and lonely.  But guess what? It’s also a beautiful journey. Your child will have depth that children without adversity will never have. A child that battles to learn what comes easily to others is a warrior.

You, mama, are the parent of a warrior.  

Now you have to determine how to “able” your child, not disable.  You’ll walk a fine line being your child’s biggest advocate and fan, but also pushing them when no one else believes in them.

Here are the things that I’ve learned in my stumbling and falls:

If my child is capable of doing it, I don’t need to do it for him. Sounds simple right?  My son Israel is a good example.  He has a thoracic level of impairment and has no feeling from the waist down.  We’ve taught/pushed Israel to climb stairs, get in and out of chairs and do things that take him a long time.  There is struggle and there are times I want to step in and help. I’ve received negative comments for pushing him, but what you may not see is the absolute pride of accomplishment he feels when he does something that feels impossible.

stairs1 copy

I must “out” my child if he/she “plays the system.”  This means that a child with special needs can easily learn to use their impairment to get out of work. Joel is a master at this.  He often pretends he doesn’t hear or understand instructions, and this usually pertains to chores or bedtime. When Joel started Kindergarten, he spent the first week pretending he did not know how to write his name, count, etc.  I had to take a picture of his handwritten name and send it in.  When the teacher called his bluff and took out the picture, he shook his head and then proceeded to write his name and the names of the rest of the people in his family.

joel copy
Love your child unconditionally. I think the first part is the easiest. You love your child, I love my children. However, that unconditionally part is the toughie.  This means that I will love my child even if they never attend a regular education class, they never swing a bat at the ball field and never live independently. I must set aside my world view and realize that my child is not meant to be “fixed.”  So my love for them is meeting them right where they are…today.

GodOur world has a caste system, we applaud and esteem the wealthy, the athletic, and the beautiful.  We prize privilege, talent and wealth.  That’s not how God’s system works.  The caste system in heaven is exactly the opposite.  I’ve learned to stop looking at what the world values.  As a parent I am a steward for my children.  They do not belong to me, they belong to God.  My job is to teach them their value and identity is found in Christ.

John 9:3  “Neither this man, nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”
They called this sweet little boy with Goldenhar syndrome "Monster." Here's what his mom wants you to know about him and his abilities.
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One thought on “They Called Him Monster

  1. I love the looking around on the ground for his ear! Hilarious. Thank you for the education about Goldenhar. I am amazed at how much I don’t know about so much. You’re a great mama!

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