An Open Letter to the Psychologist Who denied my Son's Hours
Dear Dr A
I'm not sure if you remember us. I expect you are very busy denying lots of requests at the end of the year. It is such a pattern for your agency that I'm pretty sure you must earn a bonus. Use it wisely! So, anyway, I'll remind you about us.
We requested eight weeks of an extra ten hours per week to help our 16 year old son with autism adjust to his first year of high school, and his first year of cyber school. We explained that he hadn't been able to school at home because of his brother, who is more affected by autism. So we made all the accommodations we could. I took him to my office. I help him between work and after. I love helping him with algebra, since that is my personal favorite. But explaining metaphors and racism in ways he can begin to understand is a huge joy to me. It made all the loss of personal time worth it.
But he was still having trouble. His live lessons are in the morning, when I am busiest at work. In case you don't understand autism, auditory processing is often very affected. And this is the case with Sam. Because it is hard for him, he tunes out and misses the point of the lecture. We are seeking further accommodations for him with the school, but he also NEEDS to practice paying attention because as he goes on, listening for content will never go away. Especially if he goes to college, as we hope.
He is also having trouble using the cyber school website, and could use someone who could help him with flexible thinking. If the information is not in an email, perhaps it is on a message board.
So we asked for 80 hours. Two full time weeks spread over eight. I bet you get more vacation than that, don't you. Or perhaps, you get additional ones if you come in under budget?
No one from your agency attended that first meeting. No one knew what my son was like. Or what his brother was like, the one that meant he couldn't study at home. But it was denied.
And you conference called for our grievance hearing. So you didn't see his brother walk into the room and smash a lightbulb laying on the mantle before he could be stopped. And you didn't see Sam laughing to himself as he played his favorite stim in his mind and tuned us out. You questioned us so much about our report of Sam walking out of my office without my knowledge that I actually thought you might report us for child neglect.
But that wasn't why you questioned us. Instead I found out from your colleague that you wrote down that we had applied for those eight weeks of help because we wanted 'child care.'
I was enraged. And I found it ironic in such a very unfunny way. Because if we were wanting to abrogate our duty, we could have left him in school. Where his help was so patchwork that we found out about weeks long projects days before they were due. Sam was told over and over to 'hurry up and get to work on it' without anyone realizing that he didn't know how to begin, how to organize it, how to overcome when he got stuck. His solution to getting stuck is to stare at his paper. Which is one of the problems he had starting cyber school. Another time we found out he had a concert 8 minutes before he was supposed to be at the school for that concert. Because no one had taken into consideration that he has theory of mind problems. And so did they, apparently, because everyone had assumed that, since they knew and he knew, we knew.
But you know what they say about the word 'assume.'
If we were wanting relief from taking care of him we could have left him to fail upstairs. He's a really quiet kid, and rarely makes an appearance where his brothers are creating noise. As long as we keep him fed, he's happy. If we installed a dumbwaiter to raise his food to him, we wouldn't even have to look at him.
If we were wanting childcare, I could have skipped the meeting, stayed at work and made enough money to have someone work those lousy ten hours a week.
But we wanted someone who was trained to help him. Someone who could actually teach him the skills he needed to do it independently. Which is why we only asked for eight weeks.
Funnily enough, that same colleague of yours asked why, when we were denied those eighty hours, we came back and asked for 30 hours per week to work on clinical needs.
I didn't bother to come to that meeting, because I knew it would be denied on the initial request and wasn't going to waste my work time for it. But I'll be at the next, have no fear. If I had been there, I would have opened up my mouth and told him it was for two reasons:
1. Sam has a lot of skills he needs to learn. Social skills, life skills, job skills. He needs to learn to cope with the noise his brothers make, because he can't go through life putting his fingers in his ears or shutting down the music, video, loud vocalizations of others. We had planned on working on that in the evenings and weekends with him. You know, when we could be relaxing but don't. But it is a thing that professionals could do. And that would free us up to be a family.
2. I wasn't going to waste time for a lousy 80 hours. If I am going to have to hire a lawyer, take time off work to travel to you 90 minutes away and then take it off again for our Fair Trial.
You are right that we could use childcare. We have no one to help us. I go to work and come home. When I take off from work, it is because of my children. My husband stays full time with our middle son. Who, if he was in school, would be one on one. Paul homeschools him because when he was in school they assumed that nonverbal meant not intelligent. They kept teaching him the same prelearner shit over and over. When we brought him home we realized he could read. Even though no one had actually taught him. So Paul wakes up and goes to work before he even has coffee. And stays at work all day. When I come home I spend 1-3 hours making sure Nathan is safe while he falls asleep. On the weekends I try to take all of the boys off Paul's hands at least one day so he can pursue his hobby of long distance bicycle riding. But he never goes to organized rides anymore. That involved at least one overnight and we can't risk having him away in case Nathan becomes aggressive.
We have sacrificed so much for our kids that to be accused of being, essentially, lazy that it is ludicrous.
I have attended so many seminars, read so many books, researched so much that even without my 'on the job training' I bet I have more actual autism-related training than you.
We have spent over a hundred thousand dollars to help our kids. Nathan was barely born and Sam was not yet three when I went to my first seminar - Barry Prizant. Since then we have read up on ABA and started our own program at home, because nothing was available in West Virginia. Then I found out about Verbal Behavior, bought books, traveled 8 hours to a seminar, then 4 hours to another so we could set up a program in that. I researched PECS in the days before tablets. There was no speech therapist in our town, so I had to do it all. Since then we have gone to seminars and camps for sensory issues, medication issues, anxiety in autism, preparing for transition, preparing for adulthood, preparing for work, the best ways to teach visual learners and kinesthetic learners. I researched AACs and we traveled to Deleware to find out the best way to help our middle son communicate. I now take Sam to meetings where there are adult autistics so that he can be proud of his gifts and have role models like him. Yesterday he saw Temple Grandin and it seemed to make quite an impression on him.
Dr A, I am going to assume (that word again) that when you went to school to be a psychologist, you believed you were going to be able to help people. You had somewhat grandiose notions of how much people would benefit from your services. And then you got out in the real world and found out that it was more complicated. Not all people were willing to accept your recommendations to change their lives for the better. I don't know how you came to work for CCBH. I don't know what exactly it is that leads to these end of the year denials, the claims on the agencies that they are doing their paperwork wrong, that they are using the wrong words, that the way they've been doing their work all along is dead wrong and you want the MONEY BACK RIGHT NOW. But I'm willing to bet that money for your boss, and perhaps for you, comes into it.
And when money comes before people, that means you are serving the wrong group. You have failed as a provider. You are not the person you intended to become.
If you are not helping the people you are supposed to serve, you are a failure.
Sincerely, the mom of the boys you are paid to serve.