Covid was a rough time for everyone, but it was really devastating to what it has permanently done to our children’s future. Like everything else in the lives of a parent of disabled children, we got the extra benefit of the situation being worse for us than anyone. I know people hate it when they hear me say this but if you are not in our position you don’t have a clue how good you have it in comparison. If your car has four gears, our cars have five that is just how it is, and if you don’t believe that then you can switch places with me any day of the week and see how you do. No this isn’t meant as a bash fest to NT parents it is just the obvious truth that people fully understand but have such a hard time admitting to themselves. The truth is some of us don’t have that end in sight with their children growing up and moving out to have an empty nest, we have a full nest until we are gone. We also have struggles literally everyday for things others don’t have to think of. My choice of struggles I am going to talk about today is school struggles, and the struggle is real.
A few years ago I thought to myself, how do I really help my children and children like them, so I thought about the school system. Now I wasn’t going to go back and get degrees in education or anything like that, I am too old and have a family so I wasn’t going to start over again. Many of you know I work with the disabled so I already help in a certain way but it also isn’t something that would help them directly so I thought there has to be something else. Well one night I was watching our public access Chanel and I found that there were a few openings on the school committee so I looked into it and decided to give it a shot. There were some resignations so these positions were appointments and not elected positions so I wouldn’t be out collecting votes. I went to a few meetings and expressed my interest, but when it came to a vote for the open positions, I wasn’t picked for one of the two open positions. I was sad about that but I was ok with it, you can’t win them all. It actually came down to a tie breaker.
I had let the thought go until about seven months later when there was an actual election and there was very little interest in filling the the positions. I was approached by someone in town that didn’t think the tie breaker was fair and asked me if I was interested in running, so I reconsidered. I ran as a write in candidate and I was elected to an open seat. I was very excited because I actually received a lot of votes which was really a surprise, although a lot of people know me in town. The other members of the committee welcomed me with open arms and this began my term on the committee. I have to say I enjoyed my time and I learned a lot I didn’t know, but the most important part was I was making a difference in the lives of children. By the time my term ended I was vice chair which made me very proud because the other members trusted in me.
Now last year during Covid it was difficult to say the least because we had to decide whether to have the children in remote or hybrid. Meeting after meeting all summer long, and a late spring of failed remote was not helping the situation. The thought was that remote was rushed so if we could plan for it, then that would be better, I had my doubts, and I still think in the end our children have lost a year they will never get back. People don’t really realize that we were literally having to decide something that could hurt children, and that we had to have it in our conscience if something bad happened. It was a lot of stress and it was a lot of long restless nights. In the end because of being able to distance six feet and the ventilation was pretty good we went with hybrid. I can tell you the union fought that to no end because they wanted full remote, and it wasn’t just the district, it was the state as well fighting us. We had a strong committee so we were not willing to give in because we knew it was best for the children. the thing is most of us had different backgrounds and expertise but we all worked very well together.
By the time summer was over and we were solidly into the fall, the two a week meetings, and the late meetings were over, but it left me exhausted. During this same time I was also opening a new branch office in a new state at work so I had zero free time and I was burnt out. During this time my wife and I were also fighting for out of district placement for my son because he desperately needed it. I let her handle most of it because I was on the committee and I didn’t want a conflict of interest. The fighting got pretty bad so in the end I resigned my position a few months before my term was up because I felt really weird fighting with the district I was on and did not want to be accused of using my position as a means to get what we wanted. Trust me when I tell you the district wasn’t playing favorites and they were not giving in. I will get into that story in another post but it is still going on six months later. The whole fight has been over a year, close to a year and a half. Just as the district wasn’t giving in nether were we, and we have 12 years of experience so it has been a prize fight. I am not sure they have been up against parents like us, but they will sure remember us. We didn’t give up for our daughter seven years ago so we were not going to give up on our son. She got what she needed and so will he.
The advise I would give others is don’t get pushed around, don’t give up, and go in loaded for bear. You have to be prepared and you have to come in with experts and paperwork from them. Even then it is still hard but at least you have a chance. Know your rights and fight for them, your children’s future depends on you. If you don’t understand the law, learn it, and know it. If all else fails get an advocate or a lawyer if need be. My wife and I fight on our own most of the time because we can, but if you are not equipped to do that get help. Look to be honest, the schools can’t just give up expensive services to everyone if it isn’t required, but if it is and you can prove it fight for it because no one is going to be nice and give it up. This is actually a good life lesson, going with the flow and just trying isn’t good enough, you have to go in armed for battle and fight until it is won. No quitting, and no quarter given because your children need you.