Ask any parent who has a child on the spectrum and they will tell you about the constant fight to get FAPE, services, respite care, etc. for their child. The struggle is never ending. From what I have heard from parents who have offspring that are older than Boo, the struggle gets even more intense after the child turns 21 and graduates out of the system. We do not have to think about this for another six years, but the upcoming battle is never far from my mind. This week gave me two good examples of when it is time to fight and when it is time to call it a day. In an earlier post I talked about tooth care, nail care, and sensory issues. I mentioned that Boo had an upcoming dental appointment. Well, long story short, I cancelled it. The other day I looked at Boo’s nails and realized that they were fast becoming talons. Usually, I wait until he is in the bath and good and sleepy before I tackle them but they were clearly at critical mass. So, I cut his nails. He was not a happy camper. Despite my being very careful he began to wiggle like a spring loaded squid. He fought and he squirmed. I made it through to the very last nail without nicking him when suddenly he jerked loose and the nail got cut back to the quick. This was immediately followed by a flood of crocodile tears. He was devastated and quickly starting to hyperventilate. He spent a long time in my arms sobbing. Yes, this is the same child that broke two bones in his arm and never even whimpered. Apparently, broken bones are one thing but a snagged thumb nail is much, much worse. I felt horrible. I decided that I was not going to put him through the terror of a dental appointment without the help of some anti anxiety meds on board. Unfortunately, his psychiatrist was out of the office for the week and I was unable to contact her. So, no meds. Without even pausing a beat, I cancelled the dentist appointment. I will reschedule it when I have some medication that can help him cope with the situation. Yes, I am aware of calming techniques, massage, sensory toys and a range of other things in my arsenal of tricks. Sometimes these things work. Sometimes they do not. I know that they will not help at the dentist office. Boo is getting to be a big, strong kid and very hard for me to control. Luckily, he is also very docile and easy going, but a trip to the dentist without some medical help is just a recipe for disaster. So, this was not the time to fight.
That was yesterday. Today is a new day and a new issue. Boo is on a waiver from the state that pays for all his medical expenses, lets us send him to sleep away camp, and also pays for his PCA (personal care assistant) help. Basically, I am given a set amount of money each fiscal year and it gets divided up between paying his PCAs, camp, therapies, etc. Recently, we had a wonderful new PCA come to us. She works at Ravi’s school and they adore each other. Immediately, we put in all of the paperwork necessary to hire her. That is when things slowed to a stand still. I got a notice from our agency that all her paperwork was in and I should have a date of hire shortly. That was two weeks ago. I gave the company a few days and then sent an email of inquiry. I was told that the paperwork had to be okayed by Boo’s county case manager. That struck me as strange, but I called up Jon, our trusty county case manager. He told me that he had nothing to do with the hiring process at all. I thanked him and dutifully sent this information to the agency. They responded by saying that maybe the paperwork needed to go to another case manager. There is one other person with whom I have worked briefly that might qualify as a case manager. I emailed her. She promptly responded that this was not her job, either. This was pretty much what I thought. So, I emailed the agency again, saying that neither of these individuals had anything to do with the hiring process of the PCA. I got a prompt email back from the agency saying that she really did not know what to do. I was not amused. In the course of about 10 minutes I sent her 8 emails of things that I thought she could do to help my PCA get hired. I wanted to know exactly whose desk the paperwork had landed on so I could call and email them, too. Not two minutes later I got an email from the agency saying that my PCA had been hired. As I suspected, the paperwork had just been sitting on someone’s desk for two weeks and they had not felt like dealing with it until I lit a fire under them. So, today was a good day to fight. I will add that I was very civil the entire time, but unrelenting. I had a good person to hire, she was depending on me for a job and there was no good reason why she could not have the job.
So, sometimes it is a day to fight and sometimes it is a day to lay low. I got my PCA hired which makes her, me and Boo very happy. I cancelled the dentist appointment and will not reschedule it until I have some pharmaceutical help in hand. Ultimately, this will make Boo much happier and hopefully we will have less of a wrestling match to get him in the chair at the dentist’s office. Being an autism mom means being a mama bear, but even a mama bear has to choose which battles to fight on any given day.
Harriet's Hedgehogs and Autism Advocacy 