So I wrote a letter. I wrote it and Mike edited it, because we think that I am better at emotive writing (vomit, ha!) and Mike is better and legal writing, at facts, etc. Here is the letter:
Anthony Beck is our firstborn son. He is nine years old. He is a happy and smart person, he loves to run and jump and watch The Wiggles. He loves to be tickled and roughhoused, he loves music and dancing. He is the oldest of four children, our only boy, and he is the only one with autism. He had a difficult babyhood, he has always had trouble sleeping, but he is now a very nice nine year old and everyone who comes in contact with him loves him.
Our hopes and dreams for Anthony are the same as our hopes and dreams for our daughters. We want him to use the gifts that he's been given to be the best person he can be. We want him to learn how to live and thrive in the world. We are willing to do anything to help him achieve his dreams.
Every day, we wake Anthony up and get him dressed. If the pull-up that he is slept in is dirty, we clean him up. Sometimes this requires putting him in the bathtub. We get Anthony dressed and get him downstairs. He frequently does not want to get dressed and responds by passive resistance or by kicking us or pulling at our clothes. On a good day, Anthony will walk downstairs himself, but sometimes I have to carry him on my shoulders. If Anthony doesn't want to go somewhere, he drops to the floor and I have to pick him up. Sometimes Anthony grabs me by the shirt and pulls me to the ground. He requires minimal assistance going to the bathroom, but sometimes he has accidents and sometimes when he has accidents, those accidents require him to be cleaned up, or we have to clean our house or our yard. We try to get Anthony out once or twice a day on the weekends, but it is challenging because Anthony will if given the opportunity bolt away from us in a store, parking lot, or park. He is fast and getting faster and catching him is becoming more of a chore as he sometimes refuses to stop when you call out to him. He requires 100% of either my husband's or my attention.
Anthony's room has barely anything in it; because we are concerned he will climb on or break anything that it is there. His dresser is in the hallway because he had tipped it over several times in his room and we were afraid it would fall on him. Anthony tore both the sliding doors off his closet, and we did not attempt to re-hang those because they are heavy and again we were afraid they would fall on him. We have a hook and eye lock on his door, which we lock every night because otherwise Anthony would wander the house at night exposing himself to all kinds of dangers which he does not even recognize let alone know how to avoid. He has only a mattress and not a box spring or frame, because if he has anything to make him taller, he will tear at the window, or the ceiling fan, both of which he has broken in the last year. We have put plexiglass over his windows so he can't get to the glass panes (he put his fist through one of the panes last year), and we have removed his ceiling fan from his room because he was pulling on the blades, and the whole thing was at risk of being pulled from the ceiling. We can't leave any of the doors in our house open or unlocked. My husband or I have to check the door every time someone goes in or out to make sure that the door is locked, or Anthony will try it and run out of the door and down the street. He shows no concept of knowing that the street is dangerous. Recently, he ran down the street and straight into a neighbor's home. We never go anywhere with all of our kids, except to church every week and sometimes if it is too noisy or something else bothers Anthony, he will start yelling or grabbing my husband and I and pulling at us, and we all have to leave.
At this point in Anthony's life, we do not see a way in which he could thrive in a school setting, because his medical needs are too great. He is incapable of sitting still or being quiet for long periods of time. I have read with great concern recent news stories which talk about special education teachers taping mittens to children's hands, belting them in chairs, or turning those chairs to lie on the floor, because I could see this happening to Anthony. It is my greatest fear that something will happen to him because he can get so frustrated and he won't be able to tell us about it. Because of his inability to sit still, not run away or understand or follow the most basic of rules, Anthony cannot attend religious education at our church, he can't go to the pool with us in the summer, he can't go to bounce house or trampoline places, which he really enjoys, because he can't wait in line, or take turns. It's not a matter of him not wanting to behave. He literally can't.
Anthony has been making slow and steady progress with his iPad and communication device but he still can't say his name if you ask him what it is. He could not cry for help if he needs it. He could not tell us if someone was hurting him. My husband and I are in tune enough with Anthony that we can tell if he needs something urgently when he is up in his room, but he cannot make his wants or needs clear to someone with whom he is not really familiar.
Anthony has taken swim lessons for several years, through an adaptive program at our local YMCA. He is learning how to swim because we are very concerned about the high incidence of water accidents for kids with autism. Every single teacher he has had has tried to show Anthony how to swim by making the swimming motions and expecting Anthony to imitate them, but that is not how Anthony learns. It simply does not compute for him to imitate something in the way it does for other kids, since Anthony lacks joint attention.
At this point in Anthony's life, my husband and I know that a public school setting is not the place for Anthony. We are deeply concerned that Anthony will regress and lose all the skills that he has acquired at Little Star Center. As an example of our concern about regression, Anthony had been doing very well with toilet training for over a year, but his toileting regressed in a major way last winter when he was out of Little Star for two weeks for holiday break and one week for weather. In three weeks, we lost months and months of work on toilet training and we are still working for him to get back to where he was last December. Because of our experience with Anthony’s regression with toilet training over three weeks, our grave concern is that if Anthony goes to a school environment where he cannot get the therapy he needs, he will regress and lose years of progress. Anthony is prescribed 40 hours a week of ABA therapy because that is what he needs - in fact, he probably needs more than that, and my husband and I do what we can at home with him on the weekends and off hours. By Sunday night, we are both exhausted from trying to keep Anthony and our three daughters safe and happy all weekend. Sometimes all we can hope for is that he is safe. Anthony can be very destructive, he loves to splash in water and see water splashing, so he will often fill a cup with water and throw it on the floor. He will spit water on the floor. He also likes to open our freezer and throw all the ice cubes on the floor. Sometimes if Anthony is upset, he will grab one of his sisters and pull at them. This usually results in them crying, and the noise making Anthony even more upset.
Although our hopes and dreams for Anthony include his attending a regular school, and learning to read and write so that he can communicate and expand his world, we know that if he were to go to a school at this point, it would do nothing but harm him. He has an urgent and medical need for the ABA therapy which he has been prescribed.
Of course we lost the appeal. A "medical professional" goes over it and decides whether or not Anthem was right in their decision to cut Anthony's hours so that he could take advantage of his free, public education. I am really mad, heartbroken even, but not because owe lost the appeal. We both knew that there was no way that we could win - the system is set up for us to lose. It would be like banging your head against the wall and being SHOCKED and SURPRISED that it hurts, oh look, it's bleeding! Wow! How did that happen? We refused to consider the possibility that the scumbags at Anthem would suddenly grow a heart and see Anthony as a person and not just a number on a large spreadsheet.
But what I am really mad about is that they made us write this letter. It seems so mean, so cruel - write this letter, pour your heart out and say all this terrible stuff about how miserable your son makes your family life and then guess what you'll get? The very services that are helping him will be taken away, so you can have MORE time to be miserable. I don't understand why the extra punch in the gut. I wonder if it ever works - if anyone ever writes such a MOVING and COMPELLING letter that it ever works. I don't think so, and it's not just because I think I wrote such a good letter, although I do think it's good and true. I think it's because it was never going to work, this plan to take his hours away has been in place for years. It's unbelievable to me, how unfair it is and I am miserable about it.
BUT, starting a week from Monday, Anthony is going to start school. He's going to - ride a bus? I guess? And then he'll be in a classroom for autistic kids and there will be one teacher for every five kids or something and ugh I just do not see it going well. Little Star is being really wonderful, beyond wonderful, and they are going to send someone there to ease the transition and then I guess we will decide how we will use the 20 hours a week that Anthem is still going to cover, although God knows how long that will be. We are planning on suing Anthem but we are taking a week or two off from all this. I have never wanted to quit something so badly in my life as I want to quit this job, and I've never had a job that's more important to NOT quit, which I think is some B.S.
