There is no Special Education Week, contrary to an internet post that keeps circulating through social net-working sites. Several times in the recent past, though, I have had friends point out there should be, and some have even asked me to make an argument for why. So to my friends who have asked me to describe the struggles, the obstacles, the determination involved in living with a learning disability, and why there is something heroic about these awesome individuals who accomplish it on a daily basis, here is my tribute to their daily victories and sometimes their moments of defeat.
In September of 2005, our three year old son, Hunter, was diagnosed with an inoperable brain tumor, after having surgery to implant a shunt to relieve pressure on his brain caused by hydrocephalus. A year and a half later, he underwent 28 radiation treatments at University of Iowa Hospitals in Iowa City, IA, under the care of a Radiation/Oncology team directed by Dr. John Buatti, and under the supervision of neurosurgeon, Dr. Albert Menezes.
By August of 2007 Hunter had undergone a second laser surgery to drill a hole through the part of his brain where the cerebral fluid was pooling after the shunt quit working to allow the fluid to drain more naturally. The surgery called a third ventriculostomy successfully accomplished its job and Hunter has had no additional surgeries on his brain since then. However, by then, he had had two major surgeries on his brain, 28 radiation treatments, and MRI’s too numerous to count.
All of these invasive treatments leave brain damage in their wake. The original shunt that failed is still in his brain, not functioning, but still there because to remove it would have caused additional damage that no brain can afford, let alone that of a developing child. In addition to that, he had already suffered brain damage prior to his cancer diagnosis from pressure the tumor and the hydrocephalus were putting on his tiny, developing brain.
It’s a nothing less than a miracle that Hunter learned to walk. However, his gait was awkward, and he stumbled and fell a lot. He actually walked at about a 33 degree angle to the left to get where he was going. His speech was limited, and at the age of 3 years old the sum total of his vocabulary was thirty-three words. He struggled to grasp a crayon or a pencil with any kind of command.
After his diagnosis, he received a development evaluation at the University of Iowa Center for Disabilities and Development to establish a base line, a diagnosis that was a little disheartening. Based on his first scores, it was really up in the air if Hunter would ever read or ever solve a simple math problem.
Because Mike and I are both educators, we were in a position to seek out all available early intercessions available for a child in Hunter’s particular set of circumstances. Hunter went to McCarroll three and four-year old preschool, had physical therapy, occupational therapy and speech therapy. We requested, and received a one-on-one teacher associate for him.
However, Hunter, himself is the real hero of this story. Hunter never quit, Hunter persevered. Hunter never doubted he could do what he set out to accomplish. Hunter would go after something he wanted like a tenacious pit bull, even in the face of our sometimes saying, “Hunter, you can’t.”
After the fact, I blame it on that danged “Nemo” movie, which he watched by the hour when he was going through all of this. You know, the one where the fish daddy is telling the little fish son who was damaged before he was born and has this weak fin, “Nemo, you can’t.” Well, Nemo didn’t pay a whole lot of attention to his daddy saying that, and if we were foolish enough to say it to Hunter, he didn’t pay a whole lot of attention either. If anything, he just tried harder to accomplish whatever he had set his mind on to accomplish.
I’ve seen Hunter spend a half hour on a math problem one of his peers spent two minutes on. I’ve seen him work on his kindergarten book from supper until the 10:00 PM news when his classmates were probably already in bed. Eventually, we began to catch on that Hunter wasn’t going to let his learning disabilities hold him back, and we started being a help instead of a hindrance.
We too, have expectations of Hunter now. A couple of days ago, I attempted to let his kindergarten teacher and resource teacher know how grateful I was to them for many of Hunter’s reading accomplishments. I publicly posted a note to Krista Burton and Sandy Saunders on the internet.
For those of you who don’t know, Krista Burton was Hunter’s kindergarten teacher at Agassiz Elementary in Ottumwa. Not only was she his teacher, but Krista campaigned to be his teacher. We knew Hunter was going to be struggling, and we actually interviewed Ottumwa personnel looking for what we felt was a good fit for Hunter, and we were going to open enroll him when we found what we thought would be that perfect fit. Well, God bless Krista, she wanted the job, and she made her case like an Ottumwa Bulldog going after a touch down. I went home and told Mike, “We’ve found our kindergarten teacher, and it’s just a plus that she happens to be in our school district already.” Krista and Sandy Saunders got Hunter off to a fantastic start in elementary school in spite of all the obstacles he was struggling with, physical therapy, occupational therapy, speech therapy, hyper activity, attention span deficit. These two teachers laid all the groundwork that helped Hunter move up four grade levels in reading in one summer at the beginning of his third grade year (yes I tutored him in reading all summer, but he knew all the building blocks when we began). We all knew he had conquered the basics. We were just waiting for them to all align themselves with little bridges in his brain until it all started to make sense, and it did. I don’t think there are any accidents, Krista. I think we were supposed to run into each other in the hallway that afternoon at Agassiz School, and I’m most grateful that we did
Krista replied to my message with this: Jody, thank you so much for the kind words. I don’t believe I deserve that much credit, it truly does take a village! I think Hunter taught me many things that year as well! I think the world of your family and you guys will ALWAYS hold a special place in my heart.
Krista, Hunter has taught me plenty of things as well, and thank you for your kind words. You have a special place in our hearts too.
Hunter can read, and he’s reading at 6th grade reading level. He’s slow. lt’s laborious. But he comprehends what he reads in the 90 percentile. Hunter is also main-streamed in 6th grade math. It may take him an hour to do a homework assignment that takes his sixth grade peers 10 to 15 minutes to accomplish, but he can do it. Hunter still struggles to express himself in verbal and written language skills, and his productivity in both vacilates like a teeter-totter, but if it means enough to him, he manages to get the job done.
Hunter is the poster boy for main-streaming in Ottumwa, IA. At one point, a team from the Child Disabilities Clinic came to observe in his classroom. After being there 15 minutes, they couldn’t pick the resource student out of the crowd, and had to ask who they were supposed to be observing. He plays violin, and shows some real appitude for it. He is in honor choir at school and loves to sing. He’s empathetic and sympathetic to other human beings, qualities we hope will stand him well as he begins to become a young adult.
There are hurts children with learning disabilities run into as well. There are times when Hunter doesn’t get an invitation to a birthday party or a bunk party. There are times when somebody mocks him and makes fun of him for showing that empathy for another’s pain, or when he bows his head and says a silent prayer over his school lunch. We’re proud of this young son of ours, though, because he has convictions, and he’s willing to stand for them, even if it does hurt.
We’re proud of the self-confidence we see emerging in a remarkable young man who has had to overcome a mountain of obstacles to stand where he is today, and he has another mountain of hurdles still before him he’ll have to overcome simply to make it through higher education, and then who knows what the future will hold after that. If anybody can do it, though, my bet is on Hunter, that he can.
There is no Special Education Week, but maybe there should be. These children are too often obscure little heroes living with their daily struggles to overcome the adversities they were born with, physical, academic and social, with little recognition and much too often, their challenges are accomplished with a whole lot of blood, sweat and tears.