DS refusing School...battling for specialist school...and coping, just!

[whatthewhatthebleep]

Hi there!

my last thread has maybe gone so I've started this new one

I am now of the 'fxxk it' school of thought - I've been dealing with so much and have realised that really, most of this situation is actually out of my hands at the moment.
I had the worst panic attack ever on monday night...paramedics had to come and check me and everything
I had gone to bed but was restless, suddenly my heart just started racing like crazy, I could feel the thumping and hear it so loudly in my head...I thought I was going to have a heart attack...
it went on like this for 20 mins, trying to take deep breaths, etc and calm myself but it didn't work.
I got down the stairs, feeling very weird and awful...I phoned nhs24..they sent paramedics to me....I was so scared. I've never experienced a full on panic attack before so I was really worried about myself. I was so glad to see these guys and felt a bit daft once it was established I wasn't dying!!!...so scarey and such an awful feeling....they were so nice about it all and very supportive...even killed a huge spider on the wall for me!!

I need to step back from everything and just focus on my DS and supporting him. We both need the balance and peace. I'm not getting up every morning and having this awful battle scene between us, it's damaging for our relationship and too much to put him through and watch the fall out over and over for him.

It's his birthday today...we have stayed in our pjs and have been building lego, we are both so tired and this is not much of a celebration but it's what he wants to do.
I've emailed school and things but not hearing anything back since this time last week...my theory is now 'well, if they aren't bothered, then why am I so worried about everything.'... He's not in school, I've done all I can.

I'm just thinking about home and us and waiting for this 'placing request' meeting next wednesday with all the powers that be. I'm going to request medical files and school files and collate everything together for myself. I may need all this if I have to take a legal stance to secure specialist placement I believe my DS must have.

Glad to be back here and be able to post and share with you all xxx

He just seems so overwhelmed and unable to do anything at all. Every Q is too difficult, he can't think, can't make a decision, nothing...he just gets upset or frustrated and angry.....egg shells with everything...

He's drinking fine but he isn't eating at all well....today he woke at 10am and has not eaten a thing yet...just some milk and he says he just isn't hungry and I can't find anything he likes the suggestion of....
Has been getting like this since friday...just not eating much and not feeling hungry either...

It seems things are deteriorating further instead of the balance I hoped we would find, (now he isn't under the pressure of school)...it's not happening that way though and I feel pretty lost in knowing anything to help him or how to really support him...other than giving and offering lots of cuddles, sitting on his bed watching a movie together, there is little he can tolerate or manage at all.....he's shutting down and it's really worrying me.

whatthe...I sent you a pm

porridge I PM'd back sorry I was rambling a bit too xx

I've now completed and printed 2 reports for meeting tomorrow.

1. to report on findings and opinions on the various provisions I was able to find and visit, etc

1. is information, evidences and reporting on Statement of Needs for DS from my perspective and what my overall conclusions are with regard to suitable provision and placement...it's 8 pages!!

Brain drain now but feeling like I can do no more at this stage. Looking forward to the meeting and feeling nervous too....wish me luck guys

Absolutely best of luck whatthe and DS.

I hope it goes well for you...sounds as if you have your homework done.
I will be thinking of you and wondering how it goes.

well, it's been a very charged up day in many ways. The meeting was about 2hrs...identifying and finding the best option for DS....

Unanimous decision all round the table...Residential is definitely the route forward from here!!

I feel relieved about this but also strange too...this could really be happening soon and I need to get my head properly round this now

It's gone from a thought to a deed iykwim...sinking in...the reality of it, this time next month we could be heading to a new horizon entirely....it's a lot to think about!!!

Fingers crossed I don't have to battle a Tribunal scenario...at this point I don't see it being this way ...but...just can't be sure..

Roll on Panel meeting to deliberate!!

whatthe you sound relieved.
Is that what you had in mind for DS? It's a big step but if it means he gets access to all the services he needs?....
Big changes ahead chez-vous!!!

I had no intention originally of even considering residential but as these weeks have progressed and I was putting everything down in writing, it began to emerge that in order for DS to really be best served and fulfill many of the areas of need he has, I realised that delivery of realistic interventions, supports and help would be more achievable if it was within 1 place in a holistic setting.

There are so many things outstanding, with food restrictions, his isolation at home and therefore mine, the environment best suited to him is one where he could be truly accepted, understood, valued and cared for, where he would have support to maintain friendships and develop social skills. .....so many areas that would otherwise be sketchy, piecemeal and not intensive or sustained enough to benefit him realistically, to say nothing of the continual disruption to a school day with attending the various appointments, therapies and outwith services he needs, which would all be impacting his education regularly....not to mention me trying to coordinate all of this and be available 24/7 for everything.

Residential means he is holistically best served in an environment which is conducive to his needs from waking to sleeping and I can return to being his mum and having our very close relationship kept intact and good between us.

It is a big decision and a huge change for us both to navigate through but I believe I now have to let him go so that I can get him back and that he has a realistic future ahead that's positive and bright for him. I feel very good about this now and really want this for him.....it all makes sense to me

What sort of 'residential' placement is this? Is there suitable local provision? Have you visited yet? How does DS feel about this? Do you feel he needs a waking day curriculum within the environment of a special school?

My DS would really rather not board but sees it as a price worth paying. At his evaluation in an indy ss it was immediately noticeable that the 1:1 adult support needed in ms was not needed at all and DS was able to be independent in that setting.

It is ASD HF specific, in-house specialists, good links to community resources and further links onto study and work with a very successful outreach service for leavers at up to 19/20yrs if chosen and would also support independent living and supports in doing so as they leave the placement and move forward.

There is nothing locally at all and even the ss day schools are limited, too much of a protected environment not utilising enough community resources...seeming to be very insular and maybe in a sort of regimented way iykwim. I couldn't see how this environment would serve him and realistic social skills he needs in the wider world and actually felt it would hinder him within the ss provision.

My DS has expressed his needs very clearly in his way that he wants and needs friendships, to be accepted, respected and he wants to be somewhere that he can cope with and be happy. He is in agreement about this. The placement is Mon-Fri and home at weekends and during holidays but that he may stay at his school for some of the time to maintain the continuity through holiday times too.

Tbh ms has never been the right setting at all but previously it was easier to manage in some ways. As he has got older ms has become a very challenging environment and his fears and anxieties have become crippling for him. He was so busy just trying to cope for most of these years, that he was unable to learn and apply himself to any work. He has been on and off suicidal, self harming and overwhelmed by school for all of his primary years.
I was seeking ss provision 2 yrs ago but didn't go forward at that time. Then transition for HS came along and I knew it wouldn't be right for him but had to go along with this.
It was a case of LA needing the proof that ms had failed and now having been exercised...we are at this point now...my DS a victim of due process and policy.

I have a school in mind and have spoken several times with them, there is 1 other so between the 2 provisions I will now need to make visits and deduce my findings and how DS feels about either of them....other than these 2 which are within and hour and a half of home...it may mean having to travel further if neither of these are appropriate....not at this stage yet and am very hopeful about the first school. I also know that they already have 3 children from my area there, so this could be a real bonus for socialising when at home, etc

Now the decision has been made that the best option is residential...it now begins the searching process to identify the right place to meet his needs and that he feels good about.....

Great news! It sounds like your DS has similar social anxieties to mine and sense of belonging is key. Its important DC have a taster session that lasts several days so that DS can get a feel for the place and the potential peer group - to them it is most important that they would like to be friends with some of the other DC. My DS will be a weekly boarder and I worried that he would not be able to cope and tbh on the first night of his evaluation he was on the office phone begging and pleading to be brought home . But the difference was that the staff listened to me when I told them what had worried him and when and actually did things differently the the next day.

I also have concerns about boarding (DH particularly doesn't want DS to board) and in calm moments, which have increased since DS has 'left' school, I desperately want that person to be at home with his family. But I know that like you I have to put aside what I want and focus on what is best for DS. I fear that a lot of people may think 'how can it be best for a 11/12 year old to live apart from their family?' - but when you have lived through suicide threats in particular you know it may be a life or death decision. I find it helps to remember that when you fear you are being selfish or in denial wanting to go back to being more of a mum and less of a carer.

Good luck with the search - you will find a place that will be unimaginably better than anything DS will have experienced before in the ms.

TBH I really do believe that my DS will find his wings at last and be thriving very quickly once he gets to the right place in meeting his needs...
I'm feeling quite positive about it all really.

He does a couple of day visits and then a 3night stay during which he and the other children will be closely observed and integrated with each other and the routine of the day, etc and then the outcome will hopefully be positive and he will gain his place there.

It may be the end of October before we have a decision though so at the moment it is just about the 2 of us at home 24/7 and trying to get my DS into a happier frame of mind and well again I hope.

At least we now know what the end goal is and have some direction now....it helps a lot knowing this...my stress level is already reduced a bit I'm glad to say

Whatthe, havent been on MN all week, too busy lol. Thats is brilliant news im so happy for you and your DS. You must feel so relaxed and happy now you know what is going to happen, and more important your DS can now relax and hopefully get well soon now that he is happy with this decision too. It will be great for him as you say he will have access to all kinds of things which wouldnt be possible otherwise. And you can enjoy your time together, being mum and son instead of you both always being anxious, exhausted, upset, and every other emotion you'll both have gone through. so happy for you both xx

Thanks Shazian ....my next problem is being stranded with no car...need to beg borrow and steal to try and find a wee runaround we can use...
buses just aren't possible without many problems and we live in a small village so really need to not feel trapped, etc....
Headache!

Oh no, one thing after another. Does your DS not qualify for mobility? I get mobility so have car on that, without it i'd be lost and trapped my DS dont cope well on public transport. Hope something comes up for you, that is a headache. Always get something sorted then have an added problem :( xx

just recieved new dls award but mobility is low rate...wondering how best I could appeal for this to be changed...any ideas??

I meant dla oopps!!

I have been given blessings of universal light and have been given 2 great pieces of great help today....
Yesterday I was feeling so low and upset but today I have been given news and support and it has changed everthing....

I got a csa letter about maintenance and it's very good news and have now got the funds available to fix my car on monday too!!!

Still going to appeal on the DLA mobility part though and hope I can 'win' this for DS.

just thought I'd update things....

Since the meeting, we haven't seen or heard from anyone involved so it has felt a bit strange tbh...gone from almost daily contact to nothing from anyone at all!!...just carrying on at home as best we can.

DS has had a few difficult days...very low and upset. I'm watching like a hawk that he doesn't hurt himself, etc It's been awful to hear him saying these things and how he is feeling. I have recorded some of these times on my phone and have it set so I can do this easily without his knowledge....not that anyone is actually helping me to address his emotional state anyway.

Seen the GP 3 times now but are no further forward apart from getting the blood test done) (the GP quick to explain he was only doing it to alleviate my worry over nutrition issues)....saying ''well, he seems to be growing fine so I don't really see an issue here''
That may be but what about how exhausted and lifeless he is, the lack of energy for anything, the fact that there are barely any fruit and veg sources within what he will eat because he is so restricted and fears even touching new foods, never mind putting in his mouth.....I think everything I say falls on deaf ears tbh. If it wasn't for the huge amount of milk he drinks...I'm not sure he would be managing at all!!

When it comes down to anyone actually taking a lead...nobody is bothering...it makes me so angry...just been left to deal with it as usual....

Seems we are in limbo until this panel reach a decision...maybe this will be the answer to our prayers...and what will happen next if it doesn't happen, doesn't bare thinking about for me right now....