What a busy 6 odd months we have had.....

First of sorry for the delay in blogging but when you read what we have been up to you hopefully will let me off.....

I met this man last year and over the Christmas holidays, I moved to Rotorua to be with him , yes we sold the house and made the big move. The kids are doing well considering, they are about to start a new school again next week. Chris had a pretty good first 6 months last year but the last 6 months in school went a bit ummmmm lets just say not so good. But he has a new beginning this year so cross fingers please :-).

High and Complex Needs well lest just say some of it is awesome, other parts of it not so sure, at the moment we are in the process of transferring it all over to the Rotorua team.

Chris had a mentor from Healthcare NZ last last year for nearly 3 months, this guy was fantastic with Chris and Chris related to him so well, anyway he taught Chris snorkeling and Chris loves water so we have enrolled him in a Diving Course in March... he has also started at the gym and thanks to his mentor his confidence and fitness level has increased. His Tourettes are pretty much non-excistant right now but his OCD is shooting up but we think it is because of the stress of the move and starting a new school etc so hopefully that will come right over time again.

We are all going to Aussie in May to the Gold Coast, it is a kids holiday and David and I will be going to Sydney some time later in the year, just the two of us.

All in all things are going pretty well...... will be back soon in a couple of weeks to let you know how school is going.

Attitiude TV and High and Complex Needs Update!!!

UPDATE: Found out the High and Complex Needs has been approved a long 2 years but we got there.....

Well we hit the TV screens yesterday at the moment you can watch it "here", click on part 3 but I think it is only available to New Zealand viewers only but come about Friday it will be available on Youtube which I will post a link to.

Tomorrow is decision day for the High and Complex needs, and we should hear within 5 working days so as you can tell it will be a stressful week for me.

Don't forget to check out my other "blog" to fund raising for Mental Health, which I was doing the 1/2 Marathon but due to my leg still playing up have changed it to a 2.8K surf swim.

Here it is on YouTube:

So whats been happening......

A hell of a lot - still waiting on the High and Complex needs but finally after 2 years they tell me I will know the outcome by the 16th June, so fingers and toes crossed it is going to be a good outcome.

Chris has been doing awesome apart from the last 48 hours, not sure if he is having waxing mood swings if that is possible but he is having them and also he is ticcing quite a bit.

Chris for the last 3 nights has been eating dinner with us at the table and better still eating what we are eating that is a huge breakthrough been years since that has happened long may it last..... we also have been working on his social skills and he is now eating of cafe plates still working on the drinking glasses though.

There was in incident at school last week which has knocked Chris back a bit, I can not discuss it on here at the moment, but it involved a teacher aid (no not his one) and Chris at the moment the school has put it in the hands of the lawyers/unions etc.....

Chris has come so far the last few months it is wonderful, certainly still a battle but I feel like we are getting somewhere. It is not Chris giving me the stress it is dealing with things like High and Complex needs, the incident at school last week etc etc anyway thats it for now I will let you know as soon as i know about the HCN but cross fingers for me it will get approved please.........

My 1/2 Marathon Challenge...

I have set myself a challenge to complete the 1/2 marathon in Taupo in August, I have set up a blog and am using it to fund raise for Mental Health Foundation of New Zealand. To check out the blog click here

I am looking for people to join me so go check it out :-).

Our Day with Attitude TV

Today was the day and what an awesome day... the team that came down were fantastic...... we could not have asked for a nicer group of people to do the filming..... so Thank You!!!!.

Chris was really relaxed with them and it was just a fantastic day and on that note I will leave you with pics.......

Curtis (Presenter) and Chris

Lunch at the Mount

Mount Beach

Cameraman

Director and Cameraman

Steph, Chris and Curtis

Director

Sound Man

Curtis and Me

Wednesday.... 18th March 09

Just a couple of photos of Chris at the Special Olympics school swimming the other week.. got to love that smile :-)



Well got a phonecall from school yesterday at about 11am could I come and pick Chris up his neck was so sore, so picked him up after a meeting I had for him at lunchtime, gave him Brufen and into bed slept all afternoon, got up for a couple of hours and then back to bed to sleep.

I think the hardest thing I find with his ticcing is the pain and exhaustion that goes with it when he tic's badly..... he has woken up and his neck is still tight and stiff.... and he says it is still really sore so not sure if he will go in to school today or not.... it is a good thing I don't have a job.... Yesterday I had a meeting, and then I had to go get him at 12pm, today I have his IEP (or whatever they are called, GSE change the names of stuff all the time) at school and then have Jan from Youth Horizons coming to work with Chris on some OCD stuff this afternoon. Tomorrow have another meeting for him so tell me how I am suppose to fit a job in there as well..... Monday we have an appointment at the hospital with the psychological services at the public hospital - and no it is not the Child Adolescent Mental Health team - have no idea who they are an appointment card came yesterday in the mail was going to ring and find out who they are but hey might leave it for a surprise.... lol.

As Chris said yesterday oh well the TV cameras will have good coverage of him ticcing if he is still like this on Friday..... I said the one thing I love about Attitude is that they are not there to film him ticcing (unlike some other TV programs we have been approached for) they are here to film him as a person.... and on that note my day begins so catch you later all :-).

What I love about Chris is that when people ask about his tics, he just causually says "oh I am going through a waxing period with my tics" whereas a few years ago, he would not go anywhere cause he was so embaressed about them but now he accepts they are part of him and will just talk about a lot of his stuff now......and we all know that once these kids accept there disabilites they are the ones that will best educate the public.....

16th March 09

Well after not seeing tics in months and months (well not bad ones) Chris is having bad ones again now, all neck and head movements but bad enough his neck is sore.... bugger bugger bugger... have no idea why he does not seem stressed.....

Apart from that all is going well still, he is more settled this week after not having a great week last week both at home and at school.

This Friday Attitude is coming for the filming, he is excited about that so maybe that is what is causing the tics... anyway not much else to say so on that note am outta here will be back on the weekend with an update on Friday and hopefully some photos of the day :-).

Another update....

Well after decreasing Chris's meds, we are increasing them again, lets just say he got into a bit of trouble at school, why a combination of things I think, 1 being he has this whole new world open to him (school) and he is trying to see where he fits in, 2: the decrease in meds I feel had a part of it as well. Anyway things are improving again.

Chris is loving school which is so nice to see and it is lovely to see him smiling and ready and rearing to go when the taxi arrives to pick him up.

Some more great news is that Attitude TV (Channel 1 Sunday 9.30am) is coming to do a story on Chris on the 20th March, I am pleased about that as they are not going to focus on just the Tourettes or OCD but they are going to focus on him as a person with mental and neurological issues. If it makes 1 person understand kids like Chris better then it will all be worth it and also knowing what sort of stories they do it can only be positive. Chris is excited about this too.

Chris did the school special olympics swimming the other week, his relay team got a first and he got a second for 25m freestyle and third in Breastroke, which was meant to be Backstroke but somewhere along the line they got it muddled but was proud of him for doing it anyway.

High and Complex Needs well this is still ongoing, the application is going ahead again so cross fingers we will hear in the next month or so.

We also have Youth Horizons Trust wrap around program in our home, right now we are working on some of the OCD stuff... she (Jan) has only just begun and I can see it will be a long and slow process but just maybe we can work trough this OCD stuff.

So yes quite a bit has happened but right now Chris is doing ok and he is happy and I couldn't be happier right now with that..... back in a couple of weeks to let you know how the filming goes.... anyone know how to lose 30 kilos in 2 weeks lol.....

Have fun and take care all catch you soon :-)

2009 Catch Up.....

Well lets go back to the holidays, over all Chris had a great holiday he is so much happier at the special needs unit at Otumoetai College and I give the staff and the unit 10/10. It is a fantastic place and for Chris it is ideal. We used emergency Respite a couple of times that was all over the holidays. Huge thanks to Youth Horizons trust for giving us this respite. There was one sad moment in the holidays one of his classmates in the unit passed away Boxing morning, he was in Auckland so never got to the funeral but we did visit the grave on his return and the school had a memorial for her last week was beautiful RIP Queree xx

He spends some time in the unit and some time in the mainstream with a teacher aid, he does English, Maths, Cooking yes cooking and Tech in the mainstream. He has made some friends which is fantastic, he is happy and looks forward to school every day, in fact he can't wait for the taxi to come and pick him up.

At the moment things are going just brilliant and I really could not ask for more.

Don't get me wrong things are still far from normal in this house - but then what is normal, have no idea anymore lol..... We have even decreased Chris's anti psychotic meds again now he is settled. Youth Horizons also have a program where they come inside the house and work along side us as a family and work on behaviour stuff and also his OCD stuff which is the killer. I met Jan last Thursday and she is meeting the kids next week and we will begin, I am excited about that especially if we can work through some of the OCD stuff......

Right now for Chris I think life is pretty good, and I hope so much that this year will be the year he stays at school full time, wow how exciting is that. The High and Complex Needs application is once again going ahead..... I am not even going to start on that how frustrating that is.....

Anyway back soon with an another update.....

Merry Christmas ....

Hi all, well Chris has settled down again, school has finished for the year, he enjoyed the last couple of weeks at college doing transition for next year, the same teacher aid is continuing with him next year which is great.

We upped the anti-psychotic meds both mornings and nights and think that has helped heaps.

We have been approved crisis respite for the holidays which is fantastic cause at the moment Chris is very high needs and I am exhausted... they are off to their dads on Christmas Eve and back the 4th January, so will get a decent break then.

Chris has been doing some animation with lego so thought I would post it here... the quality is not that great cause he was using a webcam.... but have said to him I will look at trying to get him a decent video camera next year.









Anyway have a wonderful Christmas all and I will catch you all in the New Year. Stay safe :-)

Chris slept through....

Chris enjoyed the college again yesterday :-).

Heard from the psychiatrist and we are upping Chris's anti-psychotic in the morning for now. I did give him an extra med last night and he slept through the night the first time in about 10 days :-) (the meds make him tired till he adjusts). I have now locked away all the sharp knives as again yesterday I caught him cutting himself.

Think today we will have a quiet day just cruising :-)

Friday Morning...

I am out of routine and I hate it, I love routine like Chris.... discovered Chris had cut himself some more on Wednesday night. he had new cuts on his arm yesterday morning, they are still on the top of his arms but are getting deeper :-(. He went to the Intermediate yesterday to watch the trolley derby (with his teacher aid) and to collect his books, another kid saw the state of his arms and asked him how it happened -
Chris: "I cut myself"
Kid: "why"
Chris: "cause when things are hard I want to hurt myself, it makes me feel better"
Kid: "when I am sad I eat chocolate that makes me feel better"
LOL I could so relate to that last comment.... speaking of chocolate I have been eating a bit to much of it the last few days....

Today he has the college for the morning, and he is looking forward to that.

Another day over...

And Chris had a wonderful day at the college, well till 1.30pm anyway. He walked out he was smiling and laughing, the learning support unit I think will be a great success for him. We have just been approved another 7 hours a week teacher aid hours so am hoping the school will let him go there 4 mornings a week for the last 2 weeks. Else I think we are allowed to use the extra hours for the teacher aid to come to the house. He is even talking about wanting to do the special Olympics next year. The school is also happy to adapt to his OCD needs as well. Today he even made a pizza and ate it something he would never have done at the Intermediate. And I think he even used the toilet there.... this just means how safe he is feeling in that environment.

Had our paediatrician appointment, today I had not mentioned this but he had low cortisol levels and has been having blood tests etc, he also had a 24 hour urine test a few weeks ago but that has come back normal so we will wait and see what happens and how it is when we go back in 3 weeks. They did a puberty check and he is ok there for now as well. He is still gaining a bit to much weight to quickly which is a concern but we are very closely monitoring him there, the meds he is on is certainly not helping there.

Anyway am feeling much more positive today about it all :-)

Decisions have been made....

Chris had another rough day, and I was rung up at about 11.15am to come and get him, after an emergency meeting Chris will only be going to school minimal hours. He will be doing 2 mornings a week at Otumoetai College and will do a couple of hours at the Intermediate, he will have to have a teacher aid with him at all times and we are hoping to get some additional hours, his current teacher aid will go with him to the college. So today we went and got him a uniform so he looks the same as the other kids. He is ticcing like crazy and the kids were teasing him like crazy today about it. It just breaks my heart when the kids do this.

I am trying to get hold of the Psychiatrist to see if we can up his anti-depressants to get through this.

I am tired and exhausted from all this.... I am sick of battling the education system to find a place where my boy will fit. As for the High and Complex Needs they have decided yet again to get the application up and running again, I think they finally have realised that he has high and complex needs, what I don't understand is why it took him to start self harming again and hit depression for them to realise this.

Been a while....

First of I am sorry about the long delay between posts but have made a decision to update more regular from now on, just that things were going pretty well.

Well what a year... what has been happening quite a lot. Chris had been back at school full time since term 3 with a part time teacher aid. At the beginning of term 3 he decided he wanted to go to school alone, which was not a good move, he started deteriorating and beginning of term 4 we reinstated her.

Chris's tics up until the last couple of weeks have been hardly there, you would not even notice them. Just lately in the last couple of weeks his facial tics have returned. Right now he is not doing well after such a positive year, he has been having a hard time at school with bullying and being bullied.... and things have got pretty bad. He has been having a few night terrors again and his sleeping patterns are all out of kilter. He has also started self harming again and not just at home but also the school.

We are really beginning to think Chris may have bipolar. He fits the bill perfectly and his mood swings are so up and down and he changes so quick, he is going through changes of depression then he will hit a high. Right now he is going through a state of depression and like I said above he is self harming again, he is talking about wanting to commit suicide as he feels it would be better than living right now. Needless to say we are keeping a very close eye on him right now.

His OCD is still bad but has not got any worse, well most days anyway. Next year he is going to college and he is going to Otumoetai College to there Special Needs Unit, where they have like 1 teacher and 2 teacher aids to about 8 students. I think this will be perfect for him he has had 2 transition days and really enjoyed them. He is still going to respite which is great and his High and Complex needs application has been stalled a long story.....

Anyway just a quick update for now and I am hoping to be back at least once a week from now on :-)

March 2008

Well here we are, been a while.

Chris is doing really well at the moment, We have started Chris on Quetiapine (Seroquel), and this as helped with his mood swings and also his Tics. Chris is back at school 2 hours a day - 3 days a week with a teacher aid and actually enjoying it. We are hoping to increase these hours over time. We have taken him of the Concerta, so currently he is on Fluxotine and Quetiapine and this combination is working a treat. He is now starting to go to friends houses again and just generally feeling a lot happier and more stable. His school is fantastic and his teacher is awesome and Chris really likes him.

Chris is also going to respite fortnightly for a day and loves his caregivers. As he said it is his other family :).

We are still waiting to hear on the High and Complex Needs, hopefully soon.

Anyway just a quick update catch you all soon :)

Cant have been this long......

Ok where are we at - a number of things have happened over the past few months, first of Steph got diagnosed with Epilepsy and is on meds which have helped, they still need a bit of tweaking though and go back this afternoon.

Chris had a $1500 emergency fund approved to get him a teacher aid part time, She has started and comes 3 times a week for one hour a day - but as from Monday he will be going to Tauranga Intermediate 3 times a week for 1 hour a day, small steps. He will not be in a classroom but will be just getting used to a school environment etc and am hoping by day 1 next year he will be able to start again, it wont be full time but will be part time. In the meantime for other funding we are going through High and Complex Needs so fingers crossed for that.

His medication has changed and we have increased his fluxotine which has helped with his stress which has decreased which in turn has helped with his tics.

His tics have been really good for a while now, still has bad days but generally pretty good.

Anyway will be updating now more regularly so keep checking.

For Terry in Atlanta Re: Rubifen

My son was on Ritalin slow release and Rubifen, he was on 20mg Ritalin in the morning with10 mg Rubifen and then he took a 10mg Rubifen at 3pm. So his daily total was 40 mgs which for Chris is his cut off point as any higher and it affects the Tourettes. We had great success with this combination for 18 months the only downside with this was that when it wore off we had extreme highs and lows so he would be high as a kite till the Rubifen kicked in which only took about 30 minutes and then at night once the final Rubifen had worn out he would also be over the top. We found the Rubifen lasted about 2 hours in his system. We have changed now to 36 mg Concerta and though it takes a bit longer to kick in the morning we are not getting the real extreme highs and lows at the beginning and end of each day.

We had Chris's psyc. appointment last Friday not to much to report there, discussed the tourettes a bit and the increase in tics, we are getting a referral to the physio for his neck and back as the tics are making it very sore for him, we talked meds again and have decided not to try them just yet mainly for the fact that he is not at school, if he was at school we probably would have done it. Tomorrow we have the psychologist again.... then on Friday we have Steph's appointment with the same Psyc. I discussed Steph briefly with him last week and agreed with me that she is not clumsy and he also does not feel she has ADD or whatever but agrees that yes it sounds like Absence Seizures, so he will do a referral to the paediatric neurologist and to a paediatrician and order an EEG. I am not sure if I mentioned what happened at the GP when I asked for a referral for Steph, for a couple of years she has always dropped things sometimes up to 40 times a day she also lately has been having a lot of times when she zones out her school work has deteriorated in the last 12 months anyway went to the GP concerned as her teacher had also mentioned that she was "zoning" out at school at times. He told me in front of her that she was clumsy and needed psychological help so he referred us to CAMHS (Child Adolescent Mental Health) so hence why we are of to the psyc. when he should have really referred us to a paediatrician. Anyway the psyc. at CAMHS is awesome and he will do the referrals. I will tell them that we will go to Waikato for the appointment so that we can be hopefully seen quicker as they only come to Tauranga once a month I think that neurologist that is. Beginning to think CAMHS is our second home, but I just want to put a plug in for them from me, they have been fantastic and without them we would not be where we are today. They were our lifesaver when we hit an all time low.

GSE came

and all in all is was successful, at this stage we are just going to focus on getting Chris back to school forget the educational side of it for now. She was lovely, spoke to Chris, listened to him and liked his mice, so that was a bonus, if you like his mice he will like you LOL. Anyway will know more in a few weeks.
His tics are still bad, but I think they are getting slightly less, he told me had 22 facial tics that he knew off LOL. We have the psychiatrist appointment on Friday so will catch you after that.

Guess what I got on Monday

On Monday I got phone call from GSE (Group Special Education) they are coming out tomorrow Monday 25th June at 1.30pm. So will let you know how it goes.

Tuesday we had our fortnightly psychology appointment, went well, have decided to not make Chris go to cooking tech classes due to his OCD, the psychologist feels it could do more harm than good. Oh well tech was good while it lasted. He actually didn't go to tech on Wednesday his tics were so bad, his neck was so sore that we even went and trailed neck braces to see if they would help. I am not sure what I can do to help or maybe we just got to wait it through....... any suggestions please!!

I have set up survey on TS on the main page of the website and results can be seen here.

This week we have GSE tomorrow, and psyciatrist on Friday - then school holidays yippee. My girl has camp on Wednesday and back Friday. Then next week we have her appointment.

Anyway catch you in a day or so to tell you how we get on with GSE.