Beware long rant ahead

Anyway had our psychologist appointment last week, went well not a lot to report there, but we did discuss Chris going to school maybe one more block a week, so had a meeting last Wednesday with the current school he is enrolled in. Well we had it at 8.30am so that his teacher could come for 10 minutes well she was not there, not even sure if she knew it was on so not blaming her at this stage. Anyway had the meeting with the SENCO (Deputy Principle) and health school teacher and Chris and I, well I held my mouth shut for most of it then walked out and burst into tears. We are still waiting on GSE so no funding yet for a teacher aid. What a bloody waste of time, I really feel like they can not be bothered - I said to them that I would be attending school with Chris like I do for tech. until I know he feels OK about school, they said yes it would be a good idea to go for one or two sessions, I said it would be a lot more than that, I would continue to go until the psychologist and I both thought he was emotionally stable enough to cope alone. I also mentioned I had done teacher aid work for 5 years and have the teacher aid certificate etc.... and considering he is in a class of 32 low achievers I said I was more than happy to help the other kids but still be there for Chris if needed. The reason being I can pick up the tics well before they get to bad, I know when he is about to have an anxiety attack. They basically told me that that was not possible because they wanted to keep the class as normal as possible, fine keep the class as normal as possible and let the kids struggle. I said I was not risking Chris going back to where he was 18 months ago and they had no idea what it was like. GGGGRRRRR. Not once in 6 months has the school bothered to contact me how Chris is getting on, and also in that time I had never meet the SENCO even though he had been in our Tech class but never bothered to introduce himself to us. Anyway walked out and burst into tears and decided that that school was not for Chris, I mean to say 900 students 2 teacher aids in the whole school no other kids with special needs, why because they all go to Tauranga Intermediate. Anyway was talking to the health school teacher and asked her if I was being overprotective.... I am beginning to doubt myself as a parent. Anyway got home and rung the Tauranga Intermediate and made an appointment to see them Thursday, had a meeting with the SENCO there and she was a lovely lady, introduced herself to Chris , spoke to Chris, asked him if he had any questions, she then spent the next 20 minutes showing us around the school. Such a difference in attitude, and they have a roll of 1200 but about 15 teacher aids. They also have ORRS funded children, other children with all different levels of special needs etc. Chris felt much more comfortable in this school. So before we left we placed his name down on the list for out of zone kids and find out in October, for next year. This year we will just continue to do the tech classes and wait for GSE to see if they can help in anyway. If not then I will get another SPELD assessment done on him towards the end of the year so that Tauranga Intermediate have something to go on. I just feel that at this school even if we don't get funding that they are better equipped to accommodate Chris and his needs. And that was the school he chose out of the two. I know no school is going to be perfect.......
Still waiting on GSE apparently they are way behind in assessing Chris because they are short of case workers.........
Anyway onto other things horse riding is still going great........
Steph is a lovely pink cast now with glitter and is allowed to do a bit of horse riding now......
Oh yeah heard from the Women's Weekly and they are publishing my letter to the editor.

Chris favourite mouse has a sore foot and he has been stressing the poor kids tics have gone way up again. Anyway just to end a photo of his mouse.

Kids are in Auckland

Was beginning to think Chris would not be going as we decided that if the Concerta had not arrived then he would not be going.... Anyway 5 minutes before we were due to leave the pharmacist rang and said his meds had arrived.
What I could not believe is the difference in him especially with his vocal tics, they were loud now this is the first time that we have been without his ADHD meds since the tics have gotten so much worse, is motor tics were hardly noticeable but full on vocal tics all day and all different ones.... it was really interesting.
Have an appointment at CAMHS for Steph on July 6th, so am pleased about that. Her tics don't seem to have gotten any worse, but still tics daily but just less obvious than Chris. Her teacher is also pleased we have a referral, as she has some concerns too. She is actually in a cast now, she fractured her arm, so she is not happy because she is not allowed to ride. We go back on Tuesday and they will decided if she needs another cast or not.
Well heard back from the Women's Weekly and they are not prepared to do anything about the story, as it is her personal account of a story here is the letter that I responded to again and have not heard anything surprise surprise

There response: "This was Audrey and her family's story and told from a personal angle. Every case is different, as you know. Please feel free to send a letter which can be considered for our letters page"

My response:

"Yes I understand it is a personal story told from a personal angle, but I also feel that the Women's Weekly has some responsibility in making sure that the correct information is put out there. I feel that you have chosen to publish the story, that you have a responsibility there.

Another words anyone can write anything no matter how inaccurate the story is..........

Yes every case of Tourette Syndrome is different but there is no way that what was described in that story was just Tourette Syndrome and that is my concern. Like I said I have had parents contact me worried that what your story portrayed is Tourette Syndrome. I am having to reassure them that, that is not the case.

Also on a personal level for my son it is stories like this, that make it hard for him, as it is such inaccurate information.

People with Tourette Syndrome DO NOT behave like this child.

Now that I am aware that the Women's Weekly is just gossip and not accountable journalism I will no longer be buying it and I shall be informing others of your shallow approach to stories."

So I have sent a letter to the letters page......GGGRRRRR.

May 16th 07

Well does time fly when you are having fun..... The horse leasing is going well, both kids are really enjoying it. Apart from the fact Steph is in a cast at the moment, fractured her arm, so not impressed because she is not allowed to ride.

Chris is doing OK apart from the fact that he is currently not on his Concerta, the suppliers in NZ have run out of the meds.....this is making an interesting few days. We have a meeting with the school next Wednesday morning, re integrating him back to school. I don't know what the hell is happening with GSE have not heard a bloody thing from them.

Also speaking of not hearing from people, I have not heard back from the Women's Weekly and there inaccurate description of TS, so have sent them of another email today and will ring them next week if still no response, I am not going to let this one slide.

Oh well that's it, catch you in a few days.

May 8th 07

Well things seem to be improving the motor tics are still there but the verbal tics are dying down again........
Last night we went to Circus Quirkus These guys tour around NZ and Australia doing shows for special needs, they are awesome and do an excellent show. Tickets are all sponsored by local, businesses, so t is accessible to all families. What I love is that they start on time, and the show is only just over 1 1/2 hours long just long enough for kids with short attention spans. They do shows yearly.
Had our first horse leasing yesterday went ok, considering we were a bit pushed for time to get to Circus Quirkus.
Chris seems a bit out of sorts lately, not sure why..... proberly just the tics exhausting him, well he said that he gets tired from them and they frustrate him.
Today we have the psychologist.....
Well that's about it for now

May 1st

Well Chris's tics are back again in full force the last couple of days lots of motor tics, today he has started a new verbal tic, now I am not used to verbal tics as Chris's only last a few minutes at a time, but today he has started neighing like a horse, every few minutes, now this is taking some getting used too. He even ticced heaps in tech class last Monday, normally he can disguise them quite well there.

He went horse riding today and enjoyed it, helped Pete with breaking in a a horse and loved it!!!!!!! Tomorrow his teacher comes and we have tech......

Well that's about it, all else is going well :)