Recently someone reached out to ask what I would tell a group of Boy Scouts if I could speak to them as a special needs mom. This friend, who works everyday as a speech therapist, had been invited to speak to a local Boy Scout troop about interacting with children with special needs.
Upon reading her message, a flood of thoughts raced through my mind.
What would I share?
What would I want that group of young men to know about children like the precious son who ushered me into the world of special needs parenting?
About six years ago I knew very little of special needs. I was a mom of three healthy, typically developing children. Two of our children had been adopted domestically as infants, so we were no strangers to adoption. I very vividly remember riding down the road after church one Sunday, talking with my husband about adopting a child with medical special needs. We both agreed that it was something we would be open to… in the future.
Unbeknownst to us, the future was closer than we could imagine.
Within two weeks, I had the file in my email inbox of a heart-melting, smiley, little boy who lived in an orphanage in China. Brennan, his American advocacy name, was four years old and had lived his entire life in an orphanage. He was amongst the first twenty files to be prepared for a new agency partnership at his orphanage.
Oh, his precious smiling face!
I could see in the file photo that something seemed different about his ear. What I did not anticipate was opening his file to discover photos of a right upper limb difference as well.
This little boy, whom I had quickly become so attached to right through my computer screen, had been born with left microtia and atresia and a right upper limb difference.
Microtia literally means “small ear”. Brennan had been born with an underdeveloped left outer ear, no middle ear (ear canal), and only small portions of the incus, malleus, and stapes (the three ear bones). Thankfully, he had a functional cochlea and nerve. This meant that although he could not hear from his left ear, he was a candidate for a BAHA (bone anchored hearing aid) so that he would be able to achieve bilateral hearing.
Shortly after bringing Brennan home from China, we visited an ENT doctor and an audiologist. Brennan was scheduled for an implant surgery for the post that the BAHA attaches to. That surgical procedure was honestly a breeze in the grand scheme of surgeries, and we began the wait for “osseo-integration”. In regular terms, we were waiting for Brennan’s bone to harden around the implanted titanium post. Six months later, our son had two hearing “ears”, one in the form of a BAHA.
Although we were thrilled for our son to have bilateral hearing, a device attached to the side of one’s head wasn’t exactly inconspicuous. In public, we noticed looks. Now they were not only at Brennan’s arm, but also at his new hearing aid. Some folks were brave enough to actually ask… usually whether or not Brennan’s device was a cochlear implant since those are much more widely known. At times over the past five years, Brennan or my other children would tell me that a child had made an unkind remark about Brennan’s ear or arm. Thankfully that has largely been the exception and not the norm.
As Christian parents, my husband and I strive to instill the truth in our children that they are wonderfully created. We want them to understand their value in light of the loving Father who knit them together in their biological mothers’ wombs.
For the past five years my “momma mantra” to Brennan has been, “I love you as you are. How the Lord created you is just right to me. I don’t see anything physically ‘wrong’ with you, only a physical difference, and that certainly doesn’t affect my love for you.” Within the past couple years, he once asked for a bigger left ear. If, as he continues to grow and develop into a young man, this remains a priority to him, we’ll support his decision for surgery and assist him with having the surgery.
So, getting back to my friend and that Boy Scout troop. Quickly, I typed out a few points which I felt would be important for my friend to make. The first point being that “weird” and “gross” are not acceptable words when talking about a child with a disability.
My son’s ear and arm are not “weird” nor are they “gross”. Rather, he is a joyful, loyal, and selfless boy who happens to look different than most other people. I also charged my friend to encourage the Boy Scout group to introduce themselves and engage, if appropriate, with children they meet who have disabilities. Then they can kindly and respectfully ask the questions they have about the physical differences because, let’s be honest, kids are curious by nature and learn by asking questions. I have seen over and over that if my son feels respected rather than threatened, he will willingly answer the questions that help others understand and process his differences.
Lastly, I encouraged her to tell these Boy Scouts to include children with physical differences in whatever it is they are doing. My son is much like other kids. He wants to be included and given the opportunity to participate. He wants to be “just another kid”. And who knows, in having a friend who’s different, it just might help you learn to see and do something in a way you’ve never thought of before.
As a parent, having a child with a conspicuous physical difference has certainly given me a new way to see. Most days I am blessed to witness this child I adore learning to accomplish things in his own way. Determination and problem solving skills are a part of our daily life. I rarely tell my son “no” to trying new, reasonable experiences because he sees accomplishing that task in a way that my eyes usually don’t.
Sometimes in life, a vision adjustment can come in the most unexpected ways.
How thankful I am for the vision adjustment that the Lord saw fit to bring into my life through a little boy born half a world away!
– guest post Mika