Overheard at a summer camp:
Q: Which group do you have this week?
A: I have the ”Alphabet Kids.”
Q. Why do you call them the “Alphabet Kids?”
A: Because they all have letters after their names.
My children were young when the “letters after their names” first started to appear. My oldest daughter was labeled SLD (Specific Learning Disabled.) My son soon followed with a diagnosis of ADHD (Attention Deficit Hyperactivity Disorder) My youngest son was labeled PDD.NOS (Pervasive Developmental Disorder, Not Otherwise Specified) and his twin sister, was given the inclusive label DD (Developmentally Delayed).
It was official. I had a house full of “Alphabet kids” and I became an “Alphabet Parent”. I learned how to navigate the system in this new world that may as well be known as “Alphabet Land”.
Our world is full of professionals and each professional has their own agenda. I talk with other parents and discuss these letters that define our children’s diagnoses. We have had conversations that only the parents of a child with letters after their name would understand. We talk about ESE (exceptional student education) and IEP (individual education plan) meetings. Our kids went to OT (occupational therapy) and PT (physical therapy) and we spend our share of time reading and learning as much as we can about this new Alphabet.
Alphabet kids and their families are drawn to each other. We recognize each other long before we are introduced. We are capable of bonding with total strangers in unusual places, like grocery stores and waiting rooms, for example. We watch each other or the children and someone will speak up and say some letters in the form of a question, like “ADHD?” or “PDD?” We smile and nod. Then we move closer together and start talking. We may be from completely different backgrounds and otherwise be worlds apart, but no one understands Alphabet Land better than we do!
I often have people express pity and sympathy about the isolation that my family must face daily. Yes, we face many challenges. I have children with a disability. I must deal with my own emotions, too. I often feel pangs of jealousy when I see other families having some type of fun experience that I or my children may never know. There was my own denial that I had to work through, the fear, and the social rejection that comes with being part of family that is “different”. Yet, as my children grew, I grew also. Acceptance became a path that I have chosen, not one that I was forced to take. The small accomplishments that many people take for granted become cause for celebration at our house. My 9-year-old son tied his shoelaces all by himself! I called my friends, who are also Alphabet parents, to share the great news, and they celebrated with us. Isolated? No, there are a lot of Alphabet kids, and their families in this world.
As the kids get older, we often become accidental mentors to other newly diagnosed Alphabet families. As I explained before, somehow, we are drawn to each other. One time, while I alone waited to see the dentist, a little boy bounced by and spilled my purse. His mother apologized, and as she helped me retrieve my things she explained, “We just found out that he has ADHD”. I laughed out loud. Then I took a seat beside her and we started to talk about our kids, and the letters after their names.
Is the term “Alphabet Kids” offensive? Is it discrimination? It is not intended to be. Again, another means of communicating a concept that is often misunderstood by neurotypical humans. Nobody understands the concept more than a fellow Alphabet Parent.
I wrote that story about 15 years ago. We had an Alphabet family long before it was cool. We were not very educated either. Sure, we graduated from college, but we went to work and stayed home and didn`t attend any local parent groups or any of that. We had no idea what “an indoor voice” was and we were not aware of the other societal norms for the average child. We knew our kids and our family issues but did not realize just how society viewed our alternate lifestyle. You know, the lifestyle where our special needs children were treated with respect and were free to develop at their own pace. We also did not understand that the school was incapable of educating them. Someday, we are going to write a book with the individual stories of each child. Oh, the stories we can tell….
First, we had the kid with SLD. We found out that she was dyslexic amongst other things. We were uneducated and trusted the school system to help us. They were professionals after all. It still makes me sick to think about those days and how they used our naivete against us. They stuffed our kid in a composite classroom and left her there. She tested as gifted, but her disability created limitations that we did not understand. The guidance counselor told us that our daughter’s disability required placement in a special education class. I believed that they were professionals and went along with the plan. She could read and write and was doing well with math. I did not realize that by moving her into a special education class she would not be allowed to read books on her own or do regular math. We found out much too late that they had her return to using manipulatives for math as well as only group reading. In short, she was reduced to learning at the same pace as the lowest level of the class; something they reassured us would not happen. We were such fools to trust the school system. In our defense, how could we have known that they were simply getting funding for another disabled student when she could have been mainstreamed.
Then there was the one with ADHD and that was quite an experience. There was a learning curve with that one. Trust me, there is no one that can compare busy days with us. A nice therapist once told me that some homes were simply not meant to have crystal or china. Nobody told me that the school would expect me to keep him on task in the classroom while I was at work and they were in charge! My 5-year-old son would climb over the fence and into the road during school. I was told that my son’s behavior had to improve, or he would be expelled. They said I needed to talk to him. I found out this was only happening when the children were all outside of the lunchroom unsupervised after they had eaten. The teacher on lunch monitor duty was inside the cafeteria. Some kids were throwing a ball over the fence and telling my son to “fetch”. There are so many things wrong with this situation. They were all unsupervised during the school day, yet the school called me to talk to him and threatened expulsion. Another fine example of our education system at work.
Then…one vaccine triggered a monster. Autism. I do not believe that vaccines cause these things by themselves, but they trigger an underlying susceptibility to certain conditions in the same way that a virus can trigger an autoimmune response. Like watering a seed in the system. Of course, this is coming from a parent that has experienced these things. There are no doctors here. (We do have one scientist in our crowd) Still, we will never really know if it was always there or if it was truly triggered by a vaccine, but there it is. Autism is horrible in case you were wondering. Nobody wants it. It is forced upon parents. It is much more common now than it was when our son entered school.
Schools and therapists are prepared and have experience now. We have PTSD because of dealing with the public school system. That is simply revolting! Can you imagine a world where parents of a disabled child are tortured by school personnel because they bring a disabled student to school? It is hard to imagine but that was our world.
Our son was the first autistic child our local public schools had in our district and they did not want him. He rocked back and forth. He did not answer questions the way they expected or not at all. Several teachers kicked him out of class when he did not stop a behavior on command. It was sad to see grown men so angry because a child did not respond to their commands. We were in a teacher’s conference once where I was chastised for writing my son notes of encouragement and leaving them in his folder. What kind of teacher does that? How does a teacher allow themselves to get so frustrated with a disabled child?
Our autistic son was arrested for breaking a car windshield. Some kids on the bus were shouting out the window at another kid outside the bus at the bus stop. The kids on the bus gave my son a 4-ounce plastic juice pack and told him to throw it out the window at the kid. He did, but it hit the kid’s Mom’s car windshield and bounced off. She pressed charges. The prosecutor offered a deal for probation. Seriously? A 4-ounce plastic juice pack could not break at windshield even if it were shot from a gun! We fought and the charges were dropped. Another fine example of our legal system at work.
Our son was accused of stealing a book from a teacher and was about to be arrested. The teacher let him read the book in class. My son took the cover off the book and set it aside while reading, something we taught him to do to protect library books. When it was time to switch classes, he took the book and cover with him to the next class and was reading it when a few minutes later, the school resource officer arrived and took him out of class. The teacher that owned the book explained that it was obvious that my son was stealing the book because he left class and took the cover off. My son explained that he was taught to take the covers off library books to prevent damage. He also misunderstood the “loan” because he thought he would be allowed to read the whole book. Another fight with the school. We won, but we were getting weak. I could tell stories for hours.
Social workers were the worst because some of them were convinced that our kid`s condition was caused by our drug use. Ridiculous assumption even if we didn`t already have documentation to prove otherwise. It was the fight from hell, and I wish those bastards all the karma they deserve. He won, though. He scored the highest in the Accelerated Reader program. He walked across the stage and they had to hand him a diploma because he earned it. Everything they did to make our lives hell and to get him expelled got thrown in their faces that day. He continues to be an inspiration to a lot of people.
Now, here is a thought. What if your kid is a monster? You have done everything. You are at your wits end. Remember the tragedy at Columbine High School? The two boys’ parents said, “we didn’t know”. Maybe they did and tried everything they could. What if they told the media they tried everything they could? It would have been a disaster for them. They lost their child, and they must live with the horror of their child’s actions forever. If they had owned one single parenting mistake the media would have focused on that admission and they would have been lynched.
Speaking from experience…. parents simply do not get enough support from the education system or the legal system. Our family psychologist taught us not to own anything our children did wrong because we did not do anything. For example: One of our kids was on drugs. His first question would have been “How do you know that” Then he would have broken it down into a series of specific questions that proved to us that we should not state facts that we could not prove. We have not witnessed our kid do drugs so quite simply….”We didn’t know”. At the time we did not realize that he was teaching us as parents, how to protect ourselves from a system that tends to blame parents. Anytime a person under 18 (or any age that still lives with their parents) commits a terrible crime the world will flip the situation from a criminal’s personal choice into a “blame the parent” scenario.
All our children graduated from high school and went on to live happy lives as productive members of society. There were some huge bumps in the road. Some drug use, a couple of arrests, some loss, and some gain. Two steps forward and three steps back on a long road to a basic education. Each kid had their own separate story. It was HARD. We do not have the strength now to even consider such a battle moving forward. It is difficult, painful to talk about some of it now. Oh, sure we make a lot of jokes. We must cope with our reality. But the worst is behind us now. There were times that living was a dream and surviving was all we could hope for. Not everyone is as fortunate as we have been. Once a week there is another article in the paper about a disabled person killed by restraints or shot by a cop. The sad part is that we see both sides of these stories from experience. If you have an out-of-control child and you call police for help, then anything can happen. After all the word “child” is relative. Your out-of-control child might be 17 and weigh 300 lbs.! We understand that better than most parents. Our 8-year-old son met the cops with a weapon. We wish we could forget that day. We are grateful that he survived. Still, the police are not trained in most disabilities. Anyone with a weapon could get shot! Every agency preaches that calling law enforcement is the best response, yet they leave out the part about law enforcement officers being trained to respond by eliminating threats with a bullet. Usually, law enforcement and school personnel have no training at all in how to respond to a situation involving a disabled or mentally ill person. Our school system required a training be done. The school can check a box on the form required to prove that the school has performed all the appropriate training to provide for the safety of the students and reduce the liability for the school. There. Done. Check the box. You are on your own if you live in the real world with living people that do not live their lives on a desk in a stack of paperwork. As parents it is our job to protect our children, even from themselves. Nobody tells you at the hospital when they are born just how hard that might be or how to do it. You will not find out what protecting them might involve until the situation presents itself.
So, from that perspective…I also had to practice acceptance. I had to accept that if my son did something at school that threatened the safety of himself or other life forms then he would have to face the consequences. Often, unfair consequences. Right back to the fact that nobody cares about your kid.
Schools are inclusive now and more aware of the possibilities and the differently abled children that they may have in their classrooms. I am excited for the rest of you that it is 2021 and you are raising kids now versus 20 years ago. It may not seem like it, but it is a great time to raise kids.
Yes, we have a house full of Alphabet Kids. We deserve some sort of medal of honor. Yet we believe that medals of honor belong to the kids. Nobody asks to be differently abled in a neurotypical world. Their lives have been hard. Yet in the face of adversity, they have achieved the ultimate measure of success. They survived in a world that was out to get them. And we are still a family!
Here`s some inspiration:
Listen to the mustn`ts, child,
Listen to the don`ts,
Listen to the shouldn`ts,
The impossibles, the won`ts,
Listen to the never haves,
Then listen close to me.
Anything can happen,
Child, anything can be.
We want other parents of special needs children to know that even thoug life may be difficult now, one day they will be grateful that they did not give up.
*Special thanks to the Center for Autism and Related Disabilities at the University of Florida*
*Special thanks to the teachers at Yankeetown Elementary School in Yankeetown, Florida for the time and patience it took to teach disabled children to read* We believe our kids were your greatest achievement!