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It's been a week since my last blog post, and two weeks since Barney started his anxiety reducing medication. And what a two weeks it has been. Things are no better. Barney is not going to school well. The Special Needs Teacher is phoning me up to 3 times a day (before school, during and after school) and nothing seems to be settling him.

Today is his first full day back at school. As usual it was horrific. As soon as we get near the school doors he started panicking, clinging on to me, begging me not to make him go in. He cries, screams, shouts. Holds onto me for dear life whilst the teachers try to peel him out of my arms. All the children in the cloakroom are watching him, whispering, and wondering whats wrong. He's screaming 'I cant leave you Mummy, I just cant be without you'. It is heart breaking.

Yesterday some boys from an older class were making fun of him; laughing at him and calling him a Mummy's boy; pointing and saying 'there's the boy who wants to take his Mummy to school with him!' He was very upset about that, and I don't blame him.

Today was possibly the worst so far. Probably because he knew that he was expected to go in for the full day. His anxiety started in bed as soon as he woke up. Usually it's not too bad until we get into the car. He was met at school by the SENCO and the principal, who both tried in vain to prise him away from me without too much drama. This was the first time the principal had seen whats been happening.

20 minutes of crying and pleading passed before Mrs M (the SENCO) decided to take him into the classroom whether he wanted to go or not. She told him that I'd wait in the cloak room until he was settled. If there hadn't been children coming in and out I think I would have sat down on the cloakroom floor with my head in my hands and just sobbed my heart out. I could hear his cries from the classroom. And I could see the worried looks of his school friends. He kept escaping from Mrs M and throwing himself at the classroom door. I would see his wee horrified face at the glass, pleading for me. Mrs M kept putting herself in the way of the door whilst he grappled for the handle. He kept throwing himself towards the door, begging to leave. It was really hard to see.

I felt awful for him that his school mates could watch him like that. So publicly upset. It wasn't fair on him or the class.

Mrs M finally came out and said that Barney was expecting me to go to the staff room until he had settled down. I told her that this couldn't continue as it wasn't fair on Barney to be humiliated like that every day in front of all those children. Mrs M's response was that it wasn't fair on the other children to have their day disrupted so badly. She always seems more concerned about the other children. But her role is as the special needs teacher, so you'd think she'd be more concerned about him.

In the staff room the principal came to talk with me and Mrs M. We came to an agreement that trying to get Barney into school through the usual cloakroom area just isn't going to work. He associates that whole entrance with a place of panic now and we are never going to be able to get him in that way. So the principal, and I decided that the best thing would be for Barney to come into school 20 minutes later than the other children - to avoid the hustle and bustle, pushing and noises that autistic children often find so distressing. I will bring him into school through the main entrance, past the school office and up to his classroom door without going anywhere near the cloakroom or back entrance that they usually use. I will take him to the double doors just outside his classroom, which is also where the school office is. I will stay in the school office for 20 minutes every day, so that he knows I am there whilst he settles. I am hoping this will stop him from going into panic. But if he does panic, he will be able to panic in the staff room with me; away from prying eyes, worried children, and the sneers of the older nastier kids.

Today at 1.45 I am going in to school where we are going to do a walk through of the process so that he knows what to expect. We are going to start at the car and do an entire walk through the process, so that tomorrow morning is less worrying for him.

I hope that this works. I know it may not work immediately. But as I have been trying to stress to Mrs M; we need to find a routine and stick to it. Doing something different every day is not going to succeed as autistic children need that routine. They need to know what is happening, and we need to stick to it. It might take a few days, or even weeks, but I'm hoping there will be some improvement.

In the meantime, Barney has decided that he just can't do school and that I should be home schooling him, like I did with his older brother and sister. I have to admit that if this continues I shall be tempted to do so. I mentioned to Mrs M that Barney wanted to be educated at home. Her face lit up and she laughed and said 'oooh well wouldn't you?' I thought to myself 'yes that would make your life a lot easier wouldn't it'. Honestly, through this whole thing all she seems to be worried about is how Barney affects the other kids. And for someone who has an autistic child of her own she seems to have very little understanding. For example- when Barney is anxious it takes him longer to speak, or formulate replies to questions. This is pretty normal for an autistic child, even when not anxious. The autism alert card that I was given even says on it to understand that there may be a delay in replying, and that people should be patient and allow for this. But Mrs M is so manic, and so noisy in general, that she asks Barney questions and when he hasn't replied in an instant, she just carries on talking.

Three phone calls

It’s been exactly one week since Barney started his medication to calm his anxiety. It’s been the most anxious week so far! From the morning he started taking it, he got more and more panicky. Having meltdowns trying to get into school, panicking hourly about our trip to Turkey in June.  Today I had three phone calls… one from the school, one from the Autism Intervention Team, and one from his psychiatrist.  The psychiatrist was phoning to ask how the medication was working and whether we were seeing a reduction in his anxiety. I explained that he had actually been worse, and asked if that could be a reaction somehow to the medication. He seemed pretty stumped.  He was a bit silent on it for a while and I wondered if I was coming across as if I was exaggerating or making it up!  He said he’d never heard of it having that reaction and that we should stick with it for another week, when he will phone again.

Yesterday a lady from the Autism Intervention Team came out to see us.  She was very nice, very understanding and seemed to be the most clued-up so far on how serious this issue of anxiety is.  She talked with us for about an hour and offered a lot of useful advice. Today she phoned the school and spoke to Mrs M, the SENCO (Special Needs coordinator) and then phoned us. Then Mrs M phoned us too. I’m not too keen on this Mrs M - out of everyone involved she seems to have the least clue. And she’s the one supposed to be helping.

As I wrote below, we were sent home from school three times last week, due to his anxiety and refusal to go into class. The school did not phone me, or offer any advise or help. We were just left to it.  So the lady from the AIT helped us come up with a plan that would help Barney get back into school. She said the important thing was to get him into the classroom, even if only for a few  minutes, before the fear got so big that it got blown out of proportion. She said we had to make an agreement with Barney about steps he could take to get back into school.

So that’s what we did. She suggested using a timer, and Mrs D (his teacher) had already said that I could sit in the car and wait if necessary.  So we came prepared with a social story that I’d made, showing him staying in school with his timer for 15 minutes. He agreed that he could try to manage 15 minutes whilst I waited in the car. Although he looked as white as a ghost and totally petrified he managed to make it into class with him timer. I told him I was proud of him and waited in the car. 30 minutes went by before he came out.  He had managed the 15 minutes and felt ok to do another 15. So that was great. 

Tomorrow he has agreed to go in until break time, and hopefully on Friday he will make it to lunch time.

But when Mrs M phoned, all manic and hyper as she usually seems to be, she was going on about it being no good him just sitting looking at a timer waiting to leave. And then something about not being able to sign him in for a full day and the education board getting wind of him having too much time off. I told her that I didn’t give a stuff what the education board thought under the circumstances, and that I had been given no help by the school to come up with a way to get him in. Plus my way had actually worked and was progressing.  Then she started waffling on about me not being allowed to stay in the car whilst Luke was at school because if I do that then all the parents will want to. What? Parents will want to join me, sitting in the cold doing nothing instead of getting on with the millions of chores we always have? I don’t think so. She seemed to be totally missing the point that I’d actually managed to get him into the classroom without any help from her.

I said that I wanted a meeting with her, and Barneys teacher, as advised by the woman from the AIT and was greeted with ‘well lets concentrate on getting him back into school first time, then in a few weeks when he’s settled again we can have a meeting to discuss things’. I wasn’t too impressed by that. Surely if things are bothering him or he has issues with school that need addressing, it is better to address them now BEFORE it starts upsetting him again? The AIT was talking about him having time out sessions during the day where he could be alone and have peace and quiet, which is common in schools for autistic children. In my opinion it would be better to get those things into place so that he feels happy to settle back into school; rather than waiting.  I don’t think me and Mrs M are going to get along somehow.

Anyway, the AIT have requested that Barney be assessed by an educational psychologist, to assess his needs at school. This may well lead to him having his own assistant in the classroom. But once again it is a waiting game.

In other news…..

Tarja and Badger are off on half term holidays this week. So Rosie is getting plenty of attention.  We have our concerns about Rosie who is also showing several autistic tendencies at the moment. I’m not sure whether I’m being paranoid and ‘on the look out’ for them, or whether she will just outgrow these things in time.  Only time will tell. 

I’ve barely had a moment for my nutritional studies the last few weeks and have fallen behind. (Well, there’s not actually a time limit so I can’t really fall behind I suppose). Excitingly we will be travelling to Turkey in June for the wedding of my sister and her fiancé… we are all very excited about that. The big kids can not wait. Especially since they’ve seen the photos of our apartment, with its lagoon swimming pool.  Barney is very nervous about flying but I’m hoping we have time to work on that.  BIG thanks to the most wonderful Mum in the entire world (no, not me!! hehe) who is paying for us to go to the wedding in Turkey. Such generosity. For which we are very grateful.  I’m really looking forward to it now, and can’t wait to see my little sis in her beautiful wedding dress, with her dashingly handsome new hubbie at their sunset beach wedding. Sounds like a dream!

Oh, and we took a trip to the Ulster Museum on Friday. Just Marty, me and the two little ones.  I wanted to show Barney the dinosaur bones, in the hopes that he would develop an interest in them rather than a fear. The second we walked into the noisy museum (I was expecting a quiet place!) he totally freaked out and wanted to go home. With the aid of his ear defenders we calmed him down and actually had a great family day together.

Some photos….

 

School troubles

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?

Little chatterbox loves her bath

Playing the waiting game (edit)

Although this blog post is not about Rosie, I just had to add this photo to it cos its just so cute!  Here she is modelling a hat that Granny made for me; but that Rosie likes to wear. Isn’t she just too cute???

Anyway, down to business. Yesterday was Barney’s review appointment with the psychiatrist at the Communications Clinic.  The appointment was supposed to be to check that all help had started and was in place. But it hasn’t.  I had a list of issues to discuss that I took with me.  This is what I took on my list….

1. Panic attacks daily about our trip to Turkey in June
2. Irrational fears and intrusive thoughts about death, dinosaurs, disasters etc
3. Seeing things at night in the shadows and believing they are real
4. Worry about wasting things – paper, food, toys
5. Worry about hurting peoples feelings in the past
6. Needing protection – wont go upstairs on in other rooms without me
7. Voice in his head tells him upsetting things that he doesn’t really feel
8. Can’t bear any type of music as they all make him think emotional thoughts

He took notes of what I was saying whilst Barney sat playing at a table of toys with his baby sister who was squealing with delight the entire time.  I got the feeling the doctor was taken aback by the fact that I knew so much about my own child and was insistent on getting help! He started ‘googling’ books that might help me learn about anxiety in children which kind of annoyed me because he wasn’t recommending books that he knew to be good, and I can google books myself any time. Plus I am building up an entire library of books about Aspergers!  I laughed when Barney piped up and said “if we buy any more books Mum we will have more than the library at school!”

Barney is supposed to be receiving one on one help from the Autism team, using cognitive behaviour techniques. The reason he isn’t getting this is because some of the staff have gone off on long term sick leave.  Dr M is going to write to them and ask that Barney is made a priority because of his anxiety.  However, in the mean time he wants to put him on a medicine called Risperdal.  This is a temporary measure until the one on one therapy starts to teach him how to cope with his anxiety. I am cross that my child requires medication because there aren’t the staff to help him.  Risperdal is used to treat adults with bipolar disorder, or schizophrenia; as well as to reduce anxiety problems in autistic children.  I am not happy about this, but see no other option at the moment. It is cruel to let him suffer.  One of the side effects of Risperdal is weight gain, so he was weighed and measured and this will be monitored.  The doctor said his anxiety was bordering on the obsessional, and I’m well aware that OCD is often seen in people on the autistic spectrum.

The doctor has also referred him to see an OT, to be assessed for sensory processing disorder. This is because of the problems he has with sounds.  Sensory problems in autistic children can make them extremely anxious, and he wants to see whether this might be the cause of his anxiety rather than a sort of obsession thought process. I’ve no idea how they test for this but I’m sure it will be very interesting.

So there we go. Still playing the waiting game.  Still learning about all this mostly by myself and hoping for the best.

Rosie aged 13 months

We love you Daddy, we do!

Rosie takes over the web cam

"Daddy"

A night to remember…

Last weekend was Marty’s 38th birthday.  This year I decided to make it a really special one for him, since he puts so much effort into taking care of us all.  He’s always spoiling me and springing romantic surprises on me; and more often than not I’m too busy or tired to do likewise.  So this year I got organised and made his birthday a good one.

One of my sisters baby-sat the night for us.  Marty thought he was just going out for dinner, but instead I shocked him by taking him to the Hilton in Belfast for the night. We stopped for pizza on the way, and then went to see the Belfast Giants ice hockey match. 

When we arrived home in the morning wee Barney had organised a party for his Dads birthday.  I had taken him to Tesco’s to buy treats and a cake, and he organised balloons and food to be ready in time for our arrival home.

Marty had the best birthday ever! Result.  It was a hard night for Barney who had several upset moments where he phoned me and cried down the phone.  I felt bad for putting him through the pain.  Tarja was a star and looked after her baby sister all night.  Rosie didn’t leave her side and was none to impressed that her parents disappeared on her!