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Old 19 Feb 18, 07:01 PM  
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#11
Tinkermom
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I was only thinking about you and your son earlier today. I don’t think I’ve ever commented but I’ve followed your journey right from your first post. I’m so sorry to hear that things sound like they’re still so difficult. I can’t imagine how frustrated you must feel by they lack of support for yourselves and your son. Mental health care in our country is a disgrace and in years to come future generations will look back in horror at how little support and care there is for families and those affected.

I wish I could send you some advice but other than positive thoughts and prayers I have nothing else to offer.

Your son is incredibly lucky to have you both as parents and I hope you have a fabulous break xx
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Old 19 Feb 18, 07:01 PM  
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Bootrip2
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You are doing so well, your son is lucky to have you. I know its such a tough job. X the battle with getting the right services on board never ends. X stay strong. X
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Old 19 Feb 18, 07:25 PM  
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DISNEYLIZ
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Thank you for taking the time to update us.
You are so strong and so caring.
Hope you a have a relaxing holiday
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Old 26 Feb 18, 03:26 PM  
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Erial
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I often wonder how you're getting on. Whilst things aren't perfect you've come such a long way. Your son is so lucky to have such caring parents.
Thank you for the update and I hope that you have a lovely, relaxing holiday with your husband.

Claire
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Old 10 Jun 18, 09:31 AM  
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Consistent
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Hi thought it’s been a few months so I would update.
More than four years into our journey though, can’t believe it’s almost four years sinc eI started this thread 😲

Well our son has been on the new oral med now for 7 months and can say that this has been the best for him.
He’s mostly content, he’s connected to us, cares, laughs, he’s appreciative .
Last night I was upstairs on my I pad, heard son talk to his dad saying about when hubby is out on the road working , my son said dad if you don’t eat much make sure you stay hydrated , I was upstairs and it brought a huge smile to my face. It ,rant to much and these little things make me realise that he is getting better. He also does anything we ask, he’s a good help around the house, he almost welcomes us asking him to do stuff.

He recently had two weeks at his grandparents , he went to the gym with my brother, out for walks, out for meals .
My mum said she could say his name outside and he didn’t get annoyed like before.

We still can’t discuss the meds too much, we don’t have to right now, he is taking them and that’s enough.
Funny when he packed his bag to go to his grandparents I went into his room, the first things in there were his meds and phone charger.
That again is something that confirms things to me.
At times he will say I don’t need them but by same token he wil, now go into the pharmacy and ask at the counter for his prescription .

We haven’t seen his care coordinater for months, but in a funny way that’s been good as it helps us all connect together without the animosity from my son feeling we aren’t on his side.
I know an appointment with his psychiatrist is due quite soon.

I do worry a bit too about his benefits, they too are due review, think it’s been a year now , I worry they will get taken off him and he will just fly under the radar not claiming and not going to app etc.
It’s funny as some people don’t want Dss contacting their dr etc, but I hope they do with him.
He still is affected and I know he can’t work right now simply as he still wants to keep a “low profile”

We had an Asda delivery the other day, he had to go to the door, he was fine then later said he shouldn’t have gone to door as he wasn’t to keep low and not let people know where he lives.
He also won’t give anyone but his dad and I his phone number. Not even his grandparents or uncle.

He is very compassionate and can’t watch the news , tv etc if something cruel or bad has happened, especially to children or animals.
That in itself makes me recognise from the child he was that this is how I predicted he would be as an adult, sounds silly but it’s like we are getting to know the real him.
Not going to pretend it’s all fine and rosy as it could crumble again but for now I’m taking this 💛.

He has put on a lot of weight, he doesn’t seem bothered, he says it’s “muscle” 😃
He did buy a bike and go out bike rides but someone said something to him on a bike ride about two months ago and it’s made him think they knew something was going to happen to him, so he’s avoided bike rides now as he still does the link and association thing with what’s done and said to him.
He will at times find the link that’s not there and read into it and feel it’s against him.

Anyway went on long enough here. Thanks all for reading and all the support you have given me.
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Old 10 Jun 18, 09:39 AM  
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Glad things are improving for all of you
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Old 10 Jun 18, 09:41 AM  
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what a great post.
So pleased to hear from you and that things appear to be going well.
I was hoping that the lack of posting was because things were sailing along ( relatively) smoothly. You were the inspiration for my own ramblings about our DD , so will be forever grateful for that, as it does share the "burden" a little

Hope you yourself are doing ok, you sound like you are x
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Old 10 Jun 18, 09:43 AM  
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I’m pleased to read a more positive post. I hope it continues for you.
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Old 10 Jun 18, 09:50 AM  
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DISNEYLIZ
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What a great update, thanks for posting. Hope your son carries on making progress
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Old 10 Jun 18, 10:33 AM  
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judy22
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Thanks for the positive update.
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