butterfly minds

Archive for August 2013

Following my letter of complaint to CAMHS I was offered an appointment for last Thursday , which was surprising as I was previously told it wouldn’t be until the end of October.

I was very nervous before the appointment and was actually feeling a little guilty about the letter , but my mum came with me for a bit of support.

We managed to get both of the boys to the appointment without too much palava , which was a small miracle .

The consultant psychiatrist was extremely thorough and he asked ALOT of questions , explained lots of things , chatted , and further assessed both boys. It’s amazing what a complaint can do.
We had a two hour consultation , he formally diagnosed O with autism and tics.
He has prescribed Melatonin to help O sleep at night and hopefully help me to start being able to leave him to go to sleep on his own.
He is also going to start O on medication for his tics. He’s already asked the gp to arrange the ECG that O needs before he starts the medication so hopefully he will be able to start taking it soon.
He’s also making a referral to the autism advisory service , I believe the school have already done this but it’s good that now they will have his proper diagnosis .
The psychiatrist also said I need to start planning secondary schools already. As he needs somewhere with ALOT support.
O has taken the melatonin twice now , I give it to him at 8 , by 9 he’s very sleepy so I’ve taken him up to bed at 9 and so far it’s taken 15 minutes for him to fall asleep , rather than 2-3 hours , and no screaming tantrum.
On Monday I going to start leaving him on his own in bed. I need to do it before he goes back to school as it will be too stressful for him to do it then.

The psychiatrist also finally diagnosed my 17 y/o , he has been under CAMHS since he was 9.
At first I was told he was just ‘misbehaving’ I was even referred to parenting classes.
Then at 14 when he was no longer able to cope with going to school and stopped leaving the house he was diagnosed with depression and social phobia , he also has tourrettes.
He was never statemented or given any real help when he struggled in school. Nor when he tried , and couldn’t cope with college in September.
He has been formally diagnosed with autism , social anxiety , tourrettes and OCD. Like O he has been given melatonin to try and help him sleep at night.As he usually stays up all night and sleep for a few hours in the day. And after an ECG he will also get new medication for his tics. He’s staying on sertraline for now , I just need to push him to take it regularly.
The psychiatrist will be referring him for CBT. And also helping him to get special needs help in college. He wants to try again !
His support worker will be seeing him twice a week to get him out of the house and help him to learn to manage being out and around people.
I’m angry that it took this long to get help. But , I think we are on the right track now. It’s not too late !

The psychiatrist chatted ALOT about autism , explaining it to the boys and talked about famous people that have had / got autism. And he said at the end of the appointment that …the most important thing is that people around the boys ( ie college , school, anyone who works with them , family )understand that this is who the boys are , the autism is part of their personality and nobody should try to make them change , just help them to be who they are.

I’m not upset to get a diagnosis for the Boys because I already knew. I think I have come to terms with it already. And I think that now we can move forward and help them both to do as well as they can.

There were apologies , and the psychiatrist told me that he has been asking his manager for help for years. And that it keeps being promised but never happens. Apparently he was promised £300,000 for CAMHS this year but It didn’t happen.
He said that he has tried to help my boys sooner ( aswell as other patients) but that the children self harming and trying to commit suicide have to come first for him , which I think goes without saying. I completely understand that but there should be someone other than just him to deal with patients that otherwise stay at the bottom of the pile.
It’s disgraceful that CAMHS are not able to help young children properly.
How many of the children that stay at the bottom of the pile become those who are self harming and suicidal ??
I don’t know ! But I bet it’s quite a lot.

I am glad I made a complaint because while I understand CAMHS are understaffed and underfunded my priority has to be my boys.
And I hope that if people do complain the people in charge of the purse strings will one day see that they need to do more.

Change won’t happen unless it is demanded.




Hi , as you know butterfly minds has moved to over here on wordpress.
Butterfly minds is my baby , my creation. It’s my autism blog.
For raising awareness , understanding and finding support.

It’s about 2 months old and it was doing really well, it was growing in numbers of hits.
I felt like I was reaching people.

But since I moved it and ( in my opinion) made it better … I’ve lost about 30 views a day.

Now if this was my personal blog I wouldn’t be bothered. That’s mine , my ramblings. But this is my way of trying to help autism.

Maybe people aren’t finding it in its new home
I hope that’s all it is.
Also I would love to hear from more autism bloggers who would like me to feature a blog post of theirs.

I have a page for links to autism blogs.
If you would like to be added let my know.

I’m also going to make a twitter support page where people can easily find twitterers happy to give support and understanding.
Please help me by doing a number if things for me , for my autism site.

Tweet my link please https://autismbutterflyminds.wordpress.com

Retweet links to posts , please

Follow @butterflyminds on twitter.

Let me know about posts I can share.

Join up to the twitter support page.

It seems like I’m asking ALOT.
I know and I’m sorry.

But this site was my idea , my creation and its having a rough patch.

It’s not my personal blog

It’s here to touch other autism parents.

Please kind reader ( I do know that I have lovely readers ) help me out.

autism needs more understanding and acceptance , together we can change things.


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