We have been lied to, cheated on, and taken advantage of so many times since we started down this path, that I am numb to the inequities and unfairness of our situation. And I will reiterate, Zach is not the problem. Zach is wonderful. People treating our need as if it is something they can take lightly is the problem.
As much as I am grateful for help - I do not like the lack of professionalism I feel that we have been forced to accept because of our situation: there are those who are paid to assist us who show up late, leave early, miss multiple sessions, text during sessions, show up unprepared, don't do what they say they are going to. I have always tried to be fair and understanding. But all this latitude I have afforded people has created much too much a comfortable environment - and people, purposely or not, took advantage of that.
As "smart" as some say I am, and as much as I know what my son's needs are, that just hasn't managed to equal that Zach gets what he needs. Initially I thought it was my stubbornness getting in the way, my difficulty in asking for help after many years of being fiercely independent. Autism has definitely taught me to ask for help. When it turned into pleas for help, I realized that my stubborness was no longer the issue.
I understand that I have a strong personality, and I realize looking back these last few years, that I have tried to compensate for that. I have accepted poor performance and inappropriate conduct to neutralize my particular negative ways. I feel terrible guilt that in an effort to make up for my faults, I may have jeopardized my son's future.
It has been a particularly bad week here. Steve just realized two days ago that our main therapist will be leaving in two weeks. I am not sure how he didn't know this other than there has been so much turnover and confusion, and he has been in the midst of major deadlines at work, that he just didn't hear. Zach is getting bare minimum services right now. And his latest special ed teacher has no experience with kids on the spectrum.
On top of that - we are currently in the process of determining if Zach may have Lyme disease. This has required testing and administration of many rounds of antibiotics which has me growing weary. As discussed in a previous post, hair cuts and dentist appointments are two particularly difficult tasks for some of our ASD kids, for which I can personally attest, and taking 6 doses a day of medication, each one a struggle, pure torture for both me and Zach, is yet another common difficulty for some of us, too.
Yesterday, after an hour of unsuccessful attempts, and the clock ticking as the time to get to an engagement clicked closer and closer, I lost it. For the first time ever, I yelled at Zach. I couldn't calm down. I was so upset, so exhausted, so resentful, I couldn't believe it. But he couldn't help it either. Some of it was his refusal to comply, but I keep in mind that he does not have good receptive language; he does not understand that it is something to do with his health- I cannot get that information across to him, so why would he comply?
In the end I became totally ashamed that those people who I should have been yelling at received my patience, and my beautiful son who deserves nothing but total compassion and every ounce of patience I have, likely received their portion of my frustration.
Trudging through mud again.