My nephew is 13 years old. He is disabled. I was there the day we first found out found how severely disabled he is. This is the story of his life, as I know it. Some of it may be condensed in order to keep this diary from becoming too lengthy, and because much of what I know about his situation was related to me second hand by my brother over the course of the last ten years. In addition, to be frank, I am relying on my memory and, as we all know, human memory is fallible. Still, most of what I will tell you is true or as close to the truth as to not make much difference.
* * *
My nephew is the oldest child of one of my younger brothers. He is three years younger than my youngest, my daughter who suffers from ADHD and an anxiety disorder (undiagnosed at the time, though her symptoms were apparent at that age). My son, my daughter and I were visiting my brother and sister-in-law during my children’s school break. Jack (not his real name) was a highly active child at age three. And by highly active I mean he bounced everywhere, like a little Tigger on amphetamines. Literally, he didn’t walk anywhere– he hopped. Everywhere. Super should have been his first name, with Hyper his second.
My daughter fell in love with Jack the day we arrived for our visit (my brother lives out west and I live out east). Perhaps she found a kindred spirit in Jack. Even though my sister-in-law (call her Colleen, a pseudonym) and my brother had just had their second child, a five month old baby boy. Though we all know how little girls often adore babies, she spent the entire first day after we arrived playing with Jack. They ran around, they jumped on the bed, they played with Jack’s little pooh bear stuffed animal (to which he was devoted) and in general had a grand if very vigorous afternoon and evening enjoying each other’s company — this after a two flights and a layover starting at 6 o’clock in the morning (Eastern Standard Time) that lasted eight hours and crossed two time zones.
Finally, my brother and I had to literally pull them apart from each other and tell them it was time for bed, around 9:30 or so, or maybe 10 PM. They were both so wound up we realized we needed to separate them and calm them down. So, after promising them both that they would have plenty of time to play the next day, I took my kids down to the basement of their duplex where air mattresses had been set up for us to sleep. After about 45 minutes, my daughter finally calmed down and fell fast asleep. I did the same about an hour later. I was exhausted.
At 7 am, my son, shaking me violently, awakened me. Something was wrong upstairs, he said and my brother needed my help immediately. Jack was having a seizure, an ambulance had been called, and paramedics were working in him. This awoke my daughter, who quickly became very anxious after hearing something was wrong with Jack. I instructed my son to keep her downstairs at all costs, and then ran up the steps. I saw the following when I arrived upstairs (everything else was regarding what had occurred before I woke up my brother told me).
Jack was on the living room floor. The paramedics were working with him. He seemed to be under control. However, within thirty seconds of my arrival upstairs, his eyes rolled back in his head, and he began shaking violently. Paramedics on the scene continued to try to get his seizures under control. Colleen was hovering nearby, in tears, in full panic mode. It was obvious that Jack was going to be taken to the nearest hospital as soon as the paramedics could get him stabilized. They were afraid to move him onto the flat board until his seizures stopped because the feared he might break his back or neck. In addition, he had stopped breathing several times over the last thirty minutes while having his seizures.
My brother pulled me aside and told me that Jack had already had at least two or three other seizures that morning. He had crawled into his parents’ bed complaining about feeling sick. That was around six am. Shortly afterward, he vomited. After cleaning up the mess, they put him in their bed, thinking he might be coming down with a virus. Shortly after that, the seizures began while he was watching a children’s show on their television. The first one lasted over a minute, but he came out of it. Soon thereafter, he had another, more violent seizure. That’s when they called 911.
If you’ve never seen someone have a severe seizure before, count yourself lucky. If you have never seen a small child related to you (son, daughter, niece or nephew, it makes no difference) have a severe, life threatening seizure count yourself very, very lucky. And, make no doubt about it, what I witnessed that morning was a deadly serious emergency. Jack had three paramedics in my brother’s small living room working on him, one in constant contact with a doctor at the hospital. He had an oxygen mask strapped to his face and the paramedics were giving him injections through an IV of various medications. They were also taking blood samples (why I do not know).
Colleen, normally the most serene, caring and beautiful women I know (by which I mean she borders on being a saint) was beside herself, and frankly, I didn’t blame her. We were all scared. For all I knew Jack might be dying. The paramedics were all business and none of them had much time for us except for occasional questions they referred to my brother or Colleen. To say their behavior as they worked on Jack that morning was not very reassuring would be an understatement.
Colleen rode with Jack in the ambulance. My brother followed in his car. I stayed behind to take care if their five month old baby, Jack’s brother (hereafter “Ricky”). My brother and Colleen left me their house key and a key to their second car, along with instructions regarding the baby. I heard from my brother over the phone that Jack had more seizures at the hospital but gradually they diminished over the next few days. When I did see my brother, he looked very haggard. Both Colleen and he spent the next several days at the hospital with each taking a few trips back to their home, either to catch some rest or to check on Ricky. I don’t think either of them spent a full night at home to sleep. They were always at the hospital.
Needless to say, what began as a happy family visit was turned upside down. My daughter was particularly distraught, though her brother and I did our best to distract her by allowing her to play with Baby Ricky, feed him a bottle or rock him in her arms to sleep (under close supervision – she was only six after all). On our last scheduled day there, the hospital released Jack, and so we were able to share a breakfast with him before leaving on our flight home. Jack looked like he had been through a train wreck, with big bags under his eyes. He’d undergone numerous scans and procedures while there in an attempt to determine what had happened. He was on some medicine for the seizures. Apparently, Jack’s meds were working well enough for him to be released from the hospital.
(cont.)
Over the next few years, Jack continued to have seizures, though with changes in medications and knowledge of triggers (flashing lights for one thing) those became less frequent as he grew older. However, to date no doctor, including any neurologist has come up with a definitive diagnosis for his why he has seizures. Furthermore, Jack’s problems were not limited to some form of epilepsy.
Jack, even before the episode I described above had developmental issues. He was a late walker and a late talker. He continued to lag in speech development. He also expressed other issues. He didn’t like to be touched at times. He became easily agitated if he became over-stimulated. He would repeat words, and often it was difficult to understand what he was trying to tell you. The neurologists and doctors who treated and examined Jack, and there have been many over the years, always refused to label him with the “A” word (Autism), perhaps because he continued to be treated for seizures, but it was clear to his parents and to the rest of us that Jacob exhibited many classical behaviors of an autistic child.
Whenever my daughter and I visited him, they got along famously, and she became very attached to Jack and him to her. However, Jack now had competition from two other brothers, younger, but ones who did not have his problems with speech, behavioral control and so forth. They were normal little boys, or at least more normal than Jack. Over the years, whenever we visited with my brother and sister-in-law, I often noticed that Jack would become withdrawn and lost in his own world, as if he recognized that though he was the elder brother, his younger siblings had surpassed him in some way. Colleen, his mother, my brother and my daughter could sometimes shake him out of his lethargy, but it wasn’t easy. Ricky, once a five-month baby, was now the second son, but as he grew older, he fell into the role of being his older brother’s protector and caretaker, a reversal of which I am sure Jack is aware.
When Jack started school, my brother and his wife immediately began to have trouble with the school district. Jack did not fit in with the other kids. Other kids bullied Jack, but mostly he was left alone and isolated. He also had difficulty keeping up with his fellow students. It was very hard to keep him focused or concentrated. And, of course, there were behavioral incidents when Jack would “lose it” or “melt down.” I know these are not traditional medical terms, but if you have a child with disorders that affect their ability to function in school, whether because they are autistic or have ADHD or some other disability that affects their behavior then you know what I mean. He would become agitated, often screaming or otherwise acting out in a manner that expressed his distress at his situation.
Eventually the school district recognized that Jack needed special attention provided him with a personal teacher, one dedicated solely to helping him. She was a wonderful woman, and a great help. Eventually, with her help Jack began to make progress and get better grades. He still had few friends at school (I’m sure most of the kids didn’t know what to make of him), but this teacher was a godsend. She worked with Colleen on a program to help Jack stay focused and not get distracted or overwhelmed by extraneous stimuli in his environment. She learned everything she could about his medications, his seizures and any other information Colleen and my brother passed along to her. More importantly, she worked tirelessly to help Jack fit in at school, not to be an outcast. She became a second mother in a way for Jack.
In addition, most of Jack’s regular classroom teachers understood he was different and needed special attention. I can’t commend them enough not only for teaching their full contingent of children, but also taking the time to work with Jack’s personal teacher to help him learn better and to make the environment in the classroom as best as it could be for someone with his disability. They also helped his classmates understand and accept jack’s limitations and his problems with interacting with others. The bullying for the most part ended.
Not that there wasn’t trouble with the school district at times, and Colleen had many run-ins with school officials,for various reasons, which I will not get into here. I do know that at one time Jack almost lost his personal teacher (I can’t recall what the exact reasons were, whether financial or some bureaucratic foul-up), but for the most part Colleen, with the help of my brother and the support of Jack’s elementary school teachers, prevailed. Meanwhile Jack continued to be seen by numerous physicians and specialists (some doctors, some not), had speech therapy and other therapists who worked to improve his communication skills and cognitive skills and, most important how to filter out the excess stimuli in his environment that was related both to his seizures and his autistic symptoms.
My sister and her husband, who had moved from the east to within an hour from Colleen and my brother, also helped out. They purchased a portable hyperbaric oxygen chamber for Jack’s use, when research studies and some of his doctors suggested that use of that medical device might help children with autistic disorders like Jack. Hyperbaric chambers raise the level of oxygen content in the chamber to roughly 85-95 % while you are in it. Jack has uses it for about three years now. We think it provides him some benefit (he usually sleeps while inside) but the benefits are uncertain at this point.
Jack is also currently participating in a program designed to help kids with ADHD, autisim and other learning disabilities. My brother and Colleen are paying the full cost for this program — thousands of dollars for each 3 month session — even though their health insurance will not pay for it. Jack has been going to the facility that offers the program for over 5 months now. Again, they are not certain the program is helping Jack.
One thing that is definitely not helping Jack is his current school district. When Jack turned 12m the school district borders were re-drawn and as a result Jack lost his personal teacher. The new district either doesn’t provide funding for children with special needs or disabilities like Jack, or they have in some way managed to avoid providing the individualized care Jack needs. He is in middle school now and has been “main-streamed.” That means he, like every other middle school child, has a different teacher for every subject and has to find his way to a different classroom each period. He has no one at the middle school dedicated to assisting him in school to my knowledge. He has no longer has single classroom teacher who knows Jack well, nor does he have classmates who know about him and have learned to accept his differences, his struggles and the reasons why he needs extra help. Nothing in his prior educational experience prepared him for this.
To use an analogy I believe is apt, he’s a child who doesn’t know how to swim who has been tossed into a shark tank without a flotation device while the adults, who should be protecting him, have run away after shouting “Bon voyage.” The results have been predictable. Jack is frequently the target of bullying — on the bus and at school. He is very anxious and afraid all the time. He is falling behind in his schoolwork, because he is expected to keep up amid all the distractions just like any other middle school age kid. He tells his parents he hates school and has asked if he can just not go anymore. He has become depressed and more withdrawn.
It probably doesn’t help that my Ph.D. (Statistics) brother was laid off from his job in February 2011 and lost his health insurance. My brother fortunately has been able to find a long term (at least for one more year) consulting gig with a Fortune 500 company but it requires him to fly to a big eastern city on Sunday and not return home until Friday. He can talk to Jack on the phone or Skype but it’s simply not the same. My brother is a great father, but he can’t be one from long distance.
My brother purchased a lousy if expensive single-family health insurance plan. For the time being, that policy covers Jack’s pre-existing conditions, but we all know that the health reforms President Obama and the democrats in Congress passed in 2010 are at risk and could be taken away at anytime should the Republicans obtain control of both houses of Congress and/or the Presidency. Health Insurance Super Pacs will be spending big this election cycle to help Republicans win wherever they can. In 2016, they will spend even more. Same for Big Pharma and no doubt the folks on Wall Street who probably already have a scheme to securitize health insurance policies and sell them as derivatives to their clients suckers (just kidding on that last one — maybe).
I’m also concerned that Republicans will eliminate or cut disability benefits for kids like Jack. It will be very difficult for him to live in the world on his own without help. At present SSDI allows disabled children to apply for lifetime disability benefits when they hit 18. My wife, who has been through the SSDI application process has been trying to help my brother and Colleen get all their ducks in line for when Jack hits 18. My only concern? That Congress with Republicans and Blue dog/DNC Dems cut a deal to eliminate these benefits before Jack reaches that age, or shortly thereafter. It certainly isn’t beyond the realm of possibility, especially from the we’re only a selective pro-life party that was more than willing to cut or eliminate the SCHIP program for kids back as evidenced by President Bush in2006, and the cuts the Republicans have called for healthcare programs during the budget deficit fiasco last spring and summer.
The federal government expects to spend about $275 billion in 2011 on Medicaid, the program that provides medical care to the poor and disabled, up from $117.9 billion in 2000. The Congressional Budget Office projects Medicaid spending will roughly double by 2021.
Indeed, cutting programs and benefits for disabled people is part of the Conservative/Republican/Corporate supported American Legislative Exchange Council’s (ALEC) agenda for eliminating or drastically reducing America’s social safety net:
Like cartoon schoolyard bullies, the American Legislative Exchange Council (ALEC)—the powerful coalition of corporations and rightwing legislators—has worked out plans to trick special ed students and their families into giving up their federally protected educational benefits, in exchange for cheap vouchers that can be used in unregulated, fly-by-night academies.
Working off ALEC’s proposed legislation–recently leaked by a whistleblower to the Center for Media and Democracy, and viewable on the web site ALEC Exposed–Republicans are pushing private-school voucher bills for kids with disabilities in states across the country. […]
What a lot of people don’t understand, says Jeff Spitzer-Resnick, managing attorney for Disability Rights Wisconsin, is that disabled students who take advantage of special ed vouchers forfeit their rights under the federal Individuals with Disabilities Education Act.
That means they no longer have a right to a “free, appropriate public education” or the specific services that come along with that.
Not only that, they give up their chance to get their school districts to cover the costs of private education, if the local public schools can’t meet their needs.
“Embedded in the law is the ability to either voluntarily or legally force school districts to pay for private schools, at significant expense,” says Spitzer-Resnick.
Here’s how ALEC’s privatization scheme to fleece parents with disabled kids has worked out in Florida:
From June 2006 through November 2010, the woefully cash-strapped Florida Department of Education (DOE) forked over $2.057 million to Julius Brown, former middle school basketball coach and cofounder of a string of obscure sports apparel businesses.
The money was in the form of tuition vouchers for kids with physical and learning disabilities to attend the South Florida Preparatory Christian Academy, the Oakland Park K-12 private school of which Brown — a looming and lean former basketball pro with a slug-like mustache — was founder, president, principal, athletic director, and boys’ basketball coach. […]
While the state played the role of the blind sugar daddy, here is what went on at South Florida Prep, according to parents, students, teachers, and public records: Two hundred students were crammed into ever-changing school locations, including a dingy strip-mall space above a liquor store and down the hall from an Asian massage parlor. Eventually, fire marshals and sheriffs condemned the “campus” as unfit for habitation, pushing the student body into transience in church foyers and public parks.
The teachers were mostly in their early 20s. An afternoon for the high school students might consist of watching a VHS tape of a 1976 Laurence Fishburne blaxploitation flick — Cornbread, Earl and Me — and then summarizing the plot. In one class session, a middle school teacher recommended putting “mother nature” — a woman’s period — into spaghetti sauce to keep a husband under thumb. “We had no materials,” says Nicolas Norris, who taught music despite the lack of a single instrument. “There were no teacher edition books. There was no curriculum.”
Read the entire article by Miami Times reporter Gus Garcia-Roberts excerpted above, even though parts of it may sicken you, because this is what conservatives and Republicans have in mind for the future of disability benefits for children. Fraudulent companies and con artists ripping off our most vulnerable children and their parents. And then when those kids become adults letting them loose on society with no proper education, no safety net and no protection unless they happen to be lucky enough to be born into a wealthy family who cares about them.
This is their plan for the future America where my nephew jack will have to sink or swim, either costing his parents hundreds of thousands of not millions of dollars to continue to support him or choosing instead to let him go when he is 18 or 21, when they can no longer afford to support him. Except I know that Colleen and my brother won’t do that, not so long as they are alive. The trouble is, what happens once they are no longer alive? What happens when all their money has been stolen from them by our future corporate owned America, which wants desperately to eliminate their social security and Medicare benefits, unemployment benefits and any other government benefits that cannot be passed straight through to private companies, much like what we are witnessing in the privatization of our prisons and our military.
My nephew Jack’s present greatly disturbs me. I am even more concerned about his future. He is just one among millions of people who will suffer horribly of the Republican Party’s future comes to fruition. As we have seen in Arizona, Michigan, Wisconsin and Florida and any other state where the GOP obtains control of the democratic process, this is their one and only goal. Treat corporations like people. Treat human beings below a certain level of wealth like animals, or worse, cogs in a machine to be disposed of when the corporations can no longer profit off them.
Every election from now on is life or death for my nephew. In addition, for anyone else with a disability, or a veteran, or a union member, or anyone really, anyone who isn’t friends with lots of NASCAR team owners. I don’t want that future for my nephew, Jack. Do you?
