“They called me monster,” Joel whispered with tears streaming down his face. My heart twisted and I was angry. Actually, it wasn’t anger, it was fury. And this fury wanted to be released to do bodily damage to some 7 year old students that had crushed my son. My sweet Joel was starting to realize how very different he looked. Born with Goldenhar syndrome, he is missing a large portion of his jaw bone and other bones within his face. He also does not 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 it, that I am reminded. I sat holding back tears as my son told me they surrounded him in the hallway and pointed and said he was a monster.
We were blessed with Joel when he was 18 months old. Since birth he had 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, we 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 then paraded a team of therapists and social workers through. They 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 have failed more often than succeeded and he is so forgiving. I am 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 this. His whole life, people will stare at him. The reality is that there are no anti-bullying campaigns in the grown-up world. I have learned this by walking around in public. Adults have actually followed my son around to get a better look. They have asked me “what’s wrong with him”. And as a parent, I have had to learn to not become instantly enraged. We have 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 have began to furiously search the floor and surrounding area, pretending to look for it. Joel has an incredible sense of humor and I look forward to watching him handle the stares and comments with good humor. And as this blog has gained in popularity, I have decided to share my children, because they are not their disability. I want people to see that their 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 it 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 6 weeks feeding him purees through a straw because his jaw was wired shut. I packed around wire cutters that were given to me by the hospital in case he choked. I will tell you that there was not a single moment that 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 are scared and lonely. There are many a day, I battle your same fears. It is often a dark journey and one 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 in their enormity. 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 fire truck 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 fire trucks when he is 30 and I think the sniffing has almost stopped, at least for today.
I am writing this stuff about weird nuances and obsessions and I am guessing that you are nodding. You get it. Your child does atypical things and I’m here to tell you it’s okay to be afraid and lonely. But guess what, it’s also a beautiful journey. Your child will have a depth that children without adversity will never have. A child that has to battle 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 will 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 have learned in all my stumbling and falls.
If my child is capable of doing it, I don’t need to do it for him. Sounds simple right? Israel is a good example. He has a thoracic level of impairment, this means he has no feeling from the waist down. We have 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 have 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.
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 shortcut or 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.
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.
Our 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 have 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.
