APEX —
(part five)
Raising a child who is ‘different’ is a remarkable experience. I’m not sure that ‘remarkable’ is even the correct word to describe it. The range of emotions and experiences one encounters in those years (sometimes, all in one day) is truly astounding. Everything from joy to terror, anger to frustration, inclusion to outcast, weightless to weight of the world. And that most troubling of thoughts seemed always to be lurking in the back of your mind: “Am I doing this right?”
Once we were able to tell people that Aaron was a dwarf, we knew that our lives had forever been changed. The first signs were the unintentionally cruel questioners who would ask, “What did YOU do to make him that way?” You learn fairly quickly to resist the temptation to punch them in the mouth for being so ignorant and insensitive. And you find yourself suddenly charged with educating everyone you meet about what dwarfism is.
The truly amazing thing that still happens to this day is the way kids see Aaron. When he was 14, we lived in Durham. A little boy, about seven years old, saw us getting out of the car to go into our apartment. He rode his bike over to Aaron and said, “You look like a little boy. But you’re really a big boy, aren’t you?” The kids always get it right the first time.
On the other hand, there were those sweet little old ladies who would see him and think he is just “so cute!” and had a need to give him a hug. The fun began when they'd reach down to pick him up. Surprise! He’s not a 30 pound five-year old. He’s a 65 pound 11 year old. Oh! The look on the faces of those poor women was priceless. It’s a cheap laugh, but I’ve always liked slapstick.
There were, of course, moments when other kids would be cruel because he was different. Once a group of four boys in elementary school put him in a tall trash can in a hallway that he could not possibly get out of. Then they walked off and left him there. His big sister found him, rescued him, and promptly stormed into the principal’s office and gave the staff what-for. Though only big-as-a-minute herself, big sister became one that no one wanted to deal with if they had abused or harassed Aaron in any way.
Fortunately, such incidents were very rare. Aaron’s outgoing personality, sharp wit and killer smile had a way of disarming and charming most all he met. These traits would serve him well in years to come.
I didn’t make any major modifications to the house to accommodate Aaron. Unlike some parents of ‘little people’, there were no special risers in the kitchen or bath installed for him. We didn’t keep a set of dishes in a lower cabinet just for him to have ease of access to. The doorknobs and light switches were not lowered either.
I did add a length of chain to several of the ceiling fans so that he could easily operate them. Of course, I often forgot the chains were hanging low and would get a surprise slap across the face by them when I crossed the room. I changed the door handles from the common round ones to a lever type, similar to what one would find on a bathroom door. The handles on average doors were above his head. The round ones required him to use both hands to turn them, then pull the door open and try to race through before the door closed on him. The lever handles made it easy for him to open doors with one hand. Similarly, I replaced the faucet knobs with four-inch long ‘wing’ handles, which were much easier to reach from across the sink.
I changed all of the light switches to a ‘rocker toggle’ type. These were easy for him to turn on and off by using a yard-long miniature pool cue he kept around. He had, and still has, an eight-inch tall wooden step stool that he used to reach things. To get a drinking cup or a dish, he had to climb up on the counter, open the cabinet, then bring it back down.
By the time Aaron was in third grade, his homework assignments increased dramatically. His books, literally, weighed more than he did. We got him a backpack and a collapsible luggage carrier to cart them around with. But, too frequently he missed his bus home because of the extra time it took to load the books that were coming home with him. We begged and pleaded with the teacher and the principal to give him some extra time and a head start (his class was on the opposite end of the building from the bus lot) so that he could catch his bus. They permitted that for only a short time. For reasons that were never fully explained, his teacher decided that allowing him to do that constituted ‘special treatment’. So, she put an end to it. Nothing we could do or say could change that.
At wits end, I called the Shriner’s hospital again. They put me in touch with a local representative of the
Little People of America (LPA). I thank God to this day for Mrs. Helen Ford. She is a “LP” (‘
little person’ – the generally preferred term for a dwarf) and a take-charge person who knows her stuff. She coached me to write a letter, which mentioned numerous items at the school that could and should be changed to accommodate Aaron. Of course, she quoted chapter and verse of the Americans with Disabilities Act (ADA) for me to include in the letter. After sending them the letter, I got an amazingly quick invitation to come to the office and discuss these matters. Unknown to them, I had no intention of pushing the matter further. But I did have a secret suggestion, thanks to Mrs. Ford, that would give them an easy out and make us all look absolutely brilliant.
You see, the ‘problem’ was that we couldn’t see the simplest of solutions right in front of us. The principal and someone from the school district were there telling me of the expense and hardship it would place on the poor school to change water fountains, faucets, door handles, etc, just to accommodate one student. I said I could empathize with that. Then I offered them the ‘Slap Your Forehead And Say D’OH!’ solution.
“How about we simply do this? Give us a second set of books for Aaron to keep at home. He won’t have to carry anything but his notebooks and pencils. And, best of all, he’ll never be able to say he didn’t do his homework because he forgot his books.”
In less than 20 minutes, I was leaving with a second set of books in my hand. Aaron has never forgiven me for this.
These are just a few of many memorable events that occurred as Aaron grew up. Looking back now, I know without a doubt what the absolute, most difficult part of being his parent was. Like any kid, he would ask for help at times. “Would you get that down for me?” And I would have to go against all my parental instincts. As hard as it was to do, I’d have to say “No. You can get that yourself.” Watching him struggle with tasks such as making his bed or doing his laundry or just getting a cup to drink from was painful, but necessary.
The world isn’t built by and for people of short stature. He had to learn to do those things on his own. One day, he’d be a grown man and there wouldn’t always be someone around to help him. He would get angry at times. He would get frustrated. But as he grew, he realized that the greatest help he received was those around him who would not help him.
From his experiences with having to learn how to cope with tasks on his own, he became very independent. Now, he will only ask for help once he’s exhausted all of his own efforts.
This independence, along with his natural charm and an instinct for knowing how to handle being the center of attention of any room he walks into, has led him into an adult life that none of us ever dreamed he would have. Still, the spotlight remained on him.
It’s now time to answer the bell.
(Note: from Part One, each chapter has a link to the following chapter)
(...the series concludes tomorrow)
