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

[EllenJaneisnotmyname]

Hi whatthe. Can't remember all the back story, sorry, but glad you are back and feeling a bit more sanguine. Panic attack sounds really scary...

[cornzy]

I don't know the back story, but I do know how stressful it is when your child struggles to attend school. ((hugs))
do you have a placement in mind already?

[shazian]

whatthe so sorry your having a crap time at the moment. Happy Birthday to your DS, glad youve both had nice relaxing time . Hope you manage to get the placement at new special school for DS. Do you have a placement in mind, have you had any contact with new school. (been to see it). Glad your feeling better re panic attack. My ds not been in school from november 11 due to various problems incl self harming and anxiety, he at special school for complex needs and im now thinking not right placement im hoping to get meeting with ed psych soon. Really feel for you xx

[whatthewhatthebleep]

yes...I've spoken a few times now to the school I really want DS to go to. I'm just waiting for some sort of nod from the Ed Psych at this meeting next week and hopefully we will be able to move forward with proper visit and maybe start process of admission work....
There is another possible school too but not spoken with them yet.

shazian I so feel for you with your DS. It's awful to see such suffering and we feel so helpless at times to resolve things for our children....all strength and hope to you both.
I often wonder if things would have ever been so bad for my DS if only school, docs, etc were listening and then responding effectively in the first place to us as parents
The system is so lacking and so uncoordinated in any way....makes me want to run away and live in a cave!!!

[shazian]

Whatthe totally agree with you the system is so lacking in every way. It is a daily struggle to bring up a child with additional needs, never mind everything having to be a fight. My ds now getting properly assessed which im ever so grateful for. The wee soul is 11, has severe autism, GDD, low muscle tone, pica/ He was nipping, biting himself rubbing his head so bad went bald at sides head bleeding and weeping and hands all cut. Kept asking school nurse to look at him cos she usually got the comm paed to then come in. Nurse said behavioural. I told them no way he never cries and is now screaming constant along with cant stand at times and legs twisting and going away from him. I was attending Yorkhill Glasgow from february until mid august on daily (mon-fri) basis. DS still in nappies doesnt talk or commnicate in any way. My poor boy had been in agony his testes were in his tummy had op in june been better since then but still a way to go. Imagine everyone saying behavioural saw so many doctors, nurses and turns out DH noticed his testes not there. Anyway since then he been in prudhoe ferndene hospital northumbria, for approx 12 weeks (been gone 4 now) for reassessment and diagnosis. Possible catatonia in tourettes, along with possible tourettes movement tics. Now def dx of SPD when i questioned why now at 11 when it obvious sensory problems quite complex and severe, one doctor told me due to not enough OT all down to money :(. Im so grateful ds getting properley assessed now he is 11, so many probs over they years and everything put down to autism when he has so many other issues. So i 100% agree the system is crap. I hope your situation is resolved very very soon x

[shazian]

catatonia in autism

[whatthewhatthebleep]

shazian I cannot imagine your heartbreak and how hard this all has been for you. I am glad to hear that you are not alone at home and hope your DH is there for you both as much as he can be.
I am choked up for you right now...I am so sorry you have faced all of this and your poor little boy has been so misunderstood too long.

It sounds as though you are turning a corner with it all now and I wish things will be much better for you all soon

(((((hugs)))))...xxx

[shazian]

Thanks whatthe yes dh here and other 2 ds (13 & 10) and lot family near us, not much help with ds2 (too much to deal with), however always willing to help out with other ds and very supportive. My ds same as a lot on here so misunderstood and if hadnt been for the operation he needed would still be. On right road now, thank god. I so hope you manage to get positive outcome next week at meeting with ed psych. Hope your ds enjoyed his birthday, and hope you both manage a nice relaxing day tomorrow too (pj's building lego all day sounds bliss) xx

[whatthewhatthebleep]

My hands seem tied at the moment and not heard back from Ed Psych on anything.....

With DS at home and not going to school it has meant I cannot go and visit and discuss anything with these possible schools for him.
I don't know whether taking DS with me is a good idea when I have no definitive's about whether a placement is even realistic to secure for him. It would be nothing short of confusing and stressful for DS and may be to no avail in the end if I cannot gain the placement for him...(raising hopes for him and letting him down if it doesn't happen)

I don't know what to do about this and the dilema is testing my patience...

I have this Options Analysis meeting next week but won't know what schools I am asking for in the Placing Request without these visits and discussions....

feels backwards and frustratingly delaying everything longer....I've asked for any clarification but heard nothing....limbo land!!!

[shazian]

Poor you, though totally agree would be confusing to your ds to take him along to possible placement. Definite be better to let him visit once place is confirmed. Where do you stay? Is it possible for someone to care for ds for an hour or so to let you visit possible school. x

[porridgelover]

whatthe glad to see you are still around.

I have no advice with the Education side of things but hope you start to get some movement for him..
Is he still off the ADHD meds.....how is that going?
You sound as if you have a battle but are ready for it?

[whatthewhatthebleep]

Managed to make a deal with DS re going to see the GP (been trying to negotiate this with him since last week)
Birthday money shopping trip IF he comes to the GP with me...

Well my poor DS melted into the floor of GP waiting room, curled in a corner, rocking humming, groaning, fingers in ears, banging his head and shoulders off the walls and like he would explode any minute. We ended up (thank goodness) queue jumping a full room of patients.
The GP was good with DS and got him to agree to return and see him next week again (without the waiting room bit). He is going to review all the medical notes and catch up with whats happening for DS and hopefully help us both with trying to get at least a better communication going between education and specialists involved, etc. He is also offering to talk with DS if he would like to do this with him too.

GP is of the opinion that any pressure on DS with regard to school and education is futile and needs to be put to one side entirely, until DS is feeling better within himself and provision is found that will meet his needs ther is nothing to be gained from discussing anything surrounding this at the moment. He recommended I simply focus on managing home and DS wellbeing and phone him if I need advice or whatever before next week.

He gave me a script for Diazepam but I am unlikely to use it at all. Perhaps it is just a comfort though, knowing it is there if I do get into a horrible panic thing again.

I feel a bit more relaxed right now and maybe feeling that my GP is with me and DS and supporting us.

[whatthewhatthebleep]

A more relaxed start to the day today. I think we slept ok too which is good.

I have SW coming today to catch up, etc

We are both a bit choked up and maybe heading into nasty colds...joy!

I heard back from Ed Psych last night too...(must be working from home I think) anyway I have a better understanding of this next process we are starting next week in finding suitable provision, etc

I need to gather all my evidence and formulate what exactly the 'needs' are which would be required to be met within a provision for DS

Once I've written my personal view and description of my DS's 'needs' within a provision...will you help me review it and offer any further points I maybe should make with regard to this? It would really help me to pinpoint and clarify and make sure I bring the strongest case forward to this meeting, to at least secure the agreement over the type of provision that DS really needs from this process.

back soon x

[porridgelover]

whatthe ....
would it help to think of headings and put things under them
e.g.

• gross motor skills and needs (I havent heard you say DS has any but just to think of).
  
• Fine motor skills and needs.
  

-Interpersonal strengths and weaknesses (e.g. empathy, gentleness, poor awareness of social rules etc)

• Intrapersonal strengths and weaknesses (e.g. severe anxiety, self-esteem)
  
• Sensory (all his issues that you've mentioned before)
  

-Language (dont know if this has ever been assessed- is his expressive language better than his receptive etc. If never assessed, then there's a need probably)
-Personal care skills (washing, dressing, feeding)
-Educational/Work skills (time-keeping, scheduling, managing transport, managing work materials, meeting standards).
You probably need to go into this in some detail as the big issue (as I take it from you) is that he is not getting his educational needs met under the current provision.

Happy to offer any help I can.

[whatthewhatthebleep]

Yes, thanks porridge...I've done a beginning document...so far.....

Ed - auditory and visual processing (assessments needed), Dyslexia and lack of progress with attainments as a result. Inability to sequence and organize, time scheduling and the order of things. Being unable to apply focus to tasks or importance of things. Distracted, sensory inputs overwhelming which impact ability to focus, concentrate or access understanding of tasks or instruction. Poor memory function, recall on learning skills attained but not concrete knowledge to build from.

Social skills - inability to access anything within the community, isolated at home, no peer friendships, anxieties severe, inability to go out of the house, public transport impossible (re waiting for, being able to cope within crowds and noise), social awareness very poor, empathy none but can apply verbal understanding on this but not follow through himself within any given situation. Very self directed, he is right and very rigid in his thinking.

personal care - hygiene issues,

Diet and nutrition - poor restricted ability with foods. Sensory issues re smells, visually and textures making for worrying health balance and needs.

Environmental issues re the space, sound, atmosphere's, other people and understanding of others around him.

Non-compliant often, argumentative, shut down, anxieties and fears, overwhelmed easily, leading to these responses and self harming, biting self, head banging, hitting body off furniture, stimming, tics (blinking and eye movements),etc. Increases in severity and regularity within this area. Has demonstrated these behaviours to a greater degree since beginning MS Secondary Schooling, leading to complete shut down and refusal to attend at all.

I'm trying to be very focused on all the area's of conflict and needs for DS. I am to present all of these areas that will make for a clear picture of all the 'needs' and areas of difficulty. This should translate into being able to identify where and what provision will be able to fulfill these needs holistically, appropriately, etc.
From this meeting it should be decided on what provision is to be looked at and how this will be met...locally if possible. I have investigated locally but found no possibles so far...
I have my own ideas about this but need to wait on due process and info gathering exercises to be done with Ed Psych and other profs next week.

Any further ideas, areas I need to think about?...points I should make?...chuck em at me...I'm all ears!! lol...thank you

[porridgelover]

whatthe that looks good.
The only thing that would occur to me (and you've prob got it covered) is how much detail to go into.
I understand what you mean when you say (for instance) ''Environmental issues re the space, sound, atmosphere's, other people and understanding of others around him''.
But will school 'get' what you mean and how this impacts on him during the day?I'm sure you know the answer and they will either 'get' it or if they are not interested, 'not get it'.

[whatthewhatthebleep]

yea, I'm not sure about how to word things and how much detail to explain iykwim.
I don't want to write a novel but I don't want to leave anything out either.

I could definitely use some help with how to convey things clearly, esp the sensory area's and the impact of these...it's difficult to describe easily

[porridgelover]

Can you use the sensory checklist ? Fill it out and copy it to them...with maybe a sheet attached re how this affects him.
The Auditory stuff sounds horrendous for him....cupping his ears at the GP's? Owww.
PM if I can help

[Walter4]

How about perhaps , using some examples on each section eg a time when the aptmosphere was too much for him etc.When I did my diaries/ observations there was so much ,but I think I got my point across. I wouldn't worry too much about making it too long.

[whatthewhatthebleep]

of course, yes the sensory checklist!!!
I made several copies of it so that I could give it to whomever .... and then a covering letter with it to convey examples, for the main difficult areas which are in relation to the school environment....of course, of course...it speaks for it's self in so many ways and I can detail with examples and common experiences for DS within environments and school settings, etc....great

So glad of this help and advice....it makes me feel pro-active and making sense of things

I should be taking this to the GP next week too...see what he thinks about referring for assessments to be done fully for this too. I did have sensory issues on my list I gave him but forgot to take the checklist with me....

[whatthewhatthebleep]

This morning I searched for legal advice. I found an Education Law Unit and have sent an email to describe our circumstances and request advice and any assistance they may be able to give me with regard to placing requests and specialist provision applications, etc.

I will await their response with hope. Even to be pointed in the right direction with exactly how I should be wording things, what are the criteria needs I should focus on discussing, etc to ensure I am going about this the best way, etc.

Fingers crossed I hear from someone soon and have more info with regard to ed law and how to approach everything to best effect and strongest case.

[porridgelover]

whatthe......how are things after the weekend? Hope you and DS had a rest?

[KOKOagainandagain]

I always find it useful to include the findings of any experts, to quote teaching and LEA staff positively and where this is not possible to provide an example rather than to make assertions which are always open to interpretation and can easily be overturned by almost every other 'expert' involved in DS's care and education. Even the pressurised equivalent of a written affidavit by the TA recording 'progress' will trump the unsubstantiated opinions of a parent. You need to be able to back up everything that you given as an opinion - if you don't have evidence, suggest it - 'may' - record absences of assessment and ongoing confusion at the same time as collecting the evidence that you need. Create your own evidence by collecting 'data' - no-one else is doing it and so they are not in a position to challege.

I know it can be confusing for DS to visit potential placements but how else are you going to know if the school can meet his needs? My DS recently did a 3 day evaluation at Frewen which he ended up loving (after pleading to be brought home on the first night) and which, seemingly miraculously, enabled him to work in ways that are simply not possible in ms. My DS is currently out of school and so this not only shows that there are schools out there that DS will attend (ie they are not a 'refuser') but also that the ss (but not ms) is able to meet his needs. Otherwise there is just a comparison between experienced ms and imagined ss.

[whatthewhatthebleep]

after a weekend of pjs and doing very little...monday has brought on the need for a bath and hopefully shopping...

So far I managed to get him to go in the bath...explaining I would come back soon and help him finish off and wash his hair,etc....he just got out, pulled the plug. Don't think he did any washing and now can't get him to wash hair over the bath. He wanted pjs but managed to get him to put clothes on and I don't know if I have the energy to start a battle to go out and get any food shopping today.The bath experience has me drained and it seems a useless exercise all round....basically he got wet and little else and it took me so long just to get him in the bloody thing in the first place...

I'm not managing this very well and tbh I'm feeling lost and very tired and unable to feel strong enough to handle everything... when it's all so bloody difficult just for anything simple and basic...I'm feeling a bit defeated and pathetic today.

Worried I have to take my car for it's MOT in the morning and if I'll even get there with things the way they are.

keepon you have given me a lot to work on. Thank you for this advice. I'm pulling as much as I can together. Have an appointment for Visual Processing/Dyslexia assessment issues next week so should have more info to include from this being done. I already completed the Sensory Processing Checklist which I was given this very useful link to and we are seeing the GP this week, amongst other outstanding area's, so should have this moving forward too and at least his (GP's) findings and opinions to include too. My presentation and profile for my DS, as I see it, is coming together quite well so far and just needs formatting and making more easy reading and concise, etc.

Just regaining myself right now and will try to do some more work on things and muster myself for a possible shopping trip if I can....likely it will be another day of very little achievement...sick of the 4 walls and the place is a disaster area too!!....not good here

[porridgelover]

whatthe....babysteps. You sound as if you have got lots done. It will be worth it.
He is not refusing the bath just for the hell of it; therefore it must be hell for him to contemplate it.

Do you have to go shopping...of ever there was a time for a delivery this sounds like it? and can anyone sit with him while you get a walk for an hour? I get great thinking done while I walk.