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What I Learned When I Adopted My Son With Special Needs

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Joel in a tie and glasses smiling
Stacey’s son, Joel.

“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 — fury at the 7-year-old students who 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 hard of hearing 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.

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 differences. 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 six 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 and his sister smiling and reaching their hands out.
Joel and his sister.

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 “ableing” 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 on his own. As a parent, I have to be careful to prepare my child to succeed in this world. And this means when children hurt my son by calling him “monster,” I have to teach him how to handle this. His whole life, people may stare at him. The reality is 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 begun 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 they’re not everything and certainly do 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 children with special needs, and I’ll be honest, that statement hurts. I’ll say this again: Please never tell the parents of a child with special needs that you could never do what they do, or that they are wonderful for parenting their child. 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 will tell you 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. I feel these types of experiences are what have shaped our son into an incredible child, and someday an amazing man.

Joel before surgery.
Joel before surgery.

To special needs parents everywhere, I see you! I know you are scared and lonely. There are many a day when I battle your same fears. It can often be a dark journey and one that has you fighting for every scrap of sanity 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 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 OK to be afraid and lonely. But guess what? It’s also a beautiful journey. You, mama, are the parent of a warrior. Now you have to determine how to “able” your child. You will walk a fine line being your child’s biggest advocate and fan, but also pushing them when no one else seems to believe 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 and 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.

Israel climbing the stairs.
Stacey’s son, Israel, climbing the stairs.

I must “out” my child if he or she “plays the system.” This means that a child with special needs can learn 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. This means 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.

Joel in a shirt and tie smiling outside.

Follow this journey on Ransom for Israel.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 13, 2016
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