Today started off like any other day. The only difference being that Barney took the first of his new medication to calm his anxiety. I know it takes a while to work, but how bizarre that he has had the most anxious day in a long time?!
Marty took him to school. At 9.30am I had a call from Marty saying he was still at the school and that Barney wouldn’t go in. Marty had taken him right to his classroom door as usual, and then he suddenly freaked out and begged not to go in. His teacher came to help whilst Barney clung for dear life to his dads trouser leg. Eventually the teacher had to go and attend to the other kids in the class and poor Marty was left in the corridor wondering what on earth to do. He tried talking to Barney. But he was panicking, feeling sick like he does when anxious. He couldn’t give any reason as to why he didn’t want to go in to school today. The school have rarely seen the very anxious side to him. They think they’ve seen him anxious, but I know for a fact that its nothing compared to what we see at home.
Eventually Barney decided to go into class. But when he got to his desk another panic attack came on and he was screaming and clinging to his Dads trousers again in front of the whole class. So the decision was made to bring him home to calm down, and then I was supposed to take him back in again a bit later for another try. I really didn’t want him to learn that he could get out of going to school any time he liked by being anxious.
So he came home, had a snack, watched some telly and had a snuggle with me. He could give no reason as to why he’d been that way.
At 11ish I took him back to school. He was worried about it but I assured him we wouldn’t make him do anything that he couldn’t handle.
The situation was not helped by the fact that when we got to school his class had gone to assembly to watch a performance. So I couldn’t take him down to his classroom. The receptionist who knows nothing about Barney said that she would take him to assembly. I saw the panic on Barneys face and explained that he is autistic and Mrs D is expecting him back, but that she would really have to tend to him herself as there was no way he would go off with this woman that he didn’t know, into a scary unfamiliar situation. She looked at me as if I was a pandering parent who was giving in to her child’s pathetic attempts for attention. I was not impressed. “Well Mrs D has a lot of other children too you know”. Yes, I know she does you patronising little ****** is what I wanted to say. I held my breath and calmly said that Mrs D was the one who told me to bring him back in, that she was aware that it was a sensitive situation, and that if she had told me about the assembly I would have made sure to avoid bringing him in at that time. Again she replied with something about the teacher having so many children that she probably didn’t have time to worry about things like that. I said ‘well I don’t know what to do’. And she just stared at me blankly. All this time Barney was next to me trying not to cry, holding his breath and looking like he was ready to freak out.
I asked if there was any chance she could get Mrs D, even though she was in assembly. She said she’d try but looked like she was breaking every rule in the book. Of course when Mrs D arrived she was totally understanding and aware of the situation. She offered to take Barney into assembly. He wouldn’t go and clung to me. She was concerned because she’d left her class unattended in assembly and was bit rushed. That didn’t help Barney.
So I offered to sit in reception while he went off with her and told him that I’d stay in reception until he was happy for me to go. He thought I might just sneak off and so I told him I’d stay as long as was necessary. I was prepared to stay there all day if needed. The teacher clearly didn’t like this idea and we were obviously taking up too much time so she said perhaps it was best if we just went home. Again.
I almost totally lost it at this point. I got quite upset and started wittering on about how no one had time to help him and I was sick of sitting on waiting lists whilst my child got more and more anxious. I explained that I was worried that if we let this fear of school take hold I might never get him back in again. Once he develops a fear it seems to stay with him indefinitely and I couldn’t handle thinking that his school life was going to be as difficult for him as his home life. The kids were coming out of assembly and she started trying to find a room for us, but all she really wanted was for us to go home. She was too busy, which I understand. But what am I supposed to do? I made some comment about everyone being too busy to help and that we’d just go home. I tried to take him to the door but she grabbed his hand and started walking us to a private room. Barney was troubled by this because he thought that if he took his eyes off of me I would sneak off and leave him there.
When we got to the little room Mrs D was trying to hold back the tears herself! She was all choked up explaining that she was upset seeing what we had to go through. Whilst I appreciate her sensitivity and that she cared about us, I don’t think getting upset was helpful to Barney. Barney is terrified of upsetting people. If he thinks he has somehow hurt someone’s feelings he gets very panicky about it and worries on it.
She sat us down and started explaining that she wasn’t trying to send him home to get rid of him but that she thought it would be best for him due to the amount of anxiety he was in. I explained to her that this was a pretty mild panic attack compared to what we experience at home, and that I felt it would be worse for him in the long term to just send him home each and every time he got anxious. If we do that he could very well never be in school.
At that point the Special Needs teacher came in. Mrs D headed back to her teacher-less class, whilst Mrs M sat with us and looked at the clock every few seconds because she too had left a group of special needs children with an assistant. Mrs M, in my opinion, was pretty much useless. She talked over me and Barney. She said things that would make his anxiety worse, like “Mrs D was very upset that you didn’t want to come in to her class today” and “your Mummy and Daddy will be very upset if you do that again”. All that does is give him guilt and make him more anxious. He has a very real problem with that already. Eventually she wrote him a social story about coming in to school tomorrow – a total waste of time in my opinion. She kept saying to him “you will come in tomorrow without all that fuss wont you?” and then expecting an answer and re-asking him. Of course he wouldn’t answer, because the answer was ‘no’ and he knew that was the wrong answer. But he wouldn’t lie.
We left the school both emotionally exhausted. I wanted to come home and cry my eyes out. Barney had been anxious all afternoon, more-so than usual. Anything and everything is setting him off. I’m wondering if this was a negative side effect of the new medication? Or just a coincidence? Barney is adamant that he needs to be home schooled and can’t go to school any more. We read a book written by a boy called Kenneth Hall who lives in Northern Ireland too, has Asperger Syndrome, and is home schooled. He has tutors that come to his house and teach him. Barney read this and had decided that’s what he needs too. I’m pretty sure that would be the best thing for him too but I can’t afford tutors and don’t think that the education board are likely to pay for it until he has suffered long term enough for them.
We will see what tomorrow brings but I’m not feeling very positive about it at the moment. Far from it. I feel that I’m the only person on the planet who has even the slightest understanding of how Barney feels, what sets him off and what makes things worse. How am I supposed to leave him with people who I can see are going to make the situation worse rather than better?