I am drowning in my life

[SparkleRainbow]

How did I end up here? I acknowledge this is a cry for help, but it is like an out of body experience I can be rational enough to see where I am and why, but still feel the same. I am wiped out emotionally, physically, spiritually, there is literally nothing left, and I guess you would say that is not surprising but still where do I go from here. I will get up tomorrow because I have to, I will keep fighting becauise I have to, because this is what life is.

and I know there are people with so much more to cope with than me, most of whom I have "met" through here, and I am ashamed at having to admit that I am steamrollered here, in the presence of such amazing women.

SparkleRainbow

I see something familiar, you mentioned that you dc have a genetic issue, and that you share this problem yourself, and that you did not get much practical support from your own family regarding this issue. So when others are not understanding your dc they are also not understanding you or your needs as well.
This where me and my partner are, we both have the same clinical diagnosis as our dc and we feel it when thye have problems in school, problems with their friends, and problems with our extended family.
There are may areas of denial at all levels, and those who want to appear normal by ticking all the so called normal boxes are only really trying to hide their own failings, deficits or disabilities. To avoid the focus of being different from the pack, and especially those who dominate the pack.

There are many online support groups for a vast range of issues, some can have a USA bias, but there are quite a few UK based support groups online now. Most of the focus is on children who have this wide range of problems and the focus is less about the children who have become adults who still have these life long issues. But the daft thing is, that it from these self same adults that the best ways of coping can acquired.

You are doing a great job, it is the others who are failing, not you.

Please don't beat yourself up, its very hard for others to understand the stress and anxiety. I have recently felt like i'm losing my grip on reality, am all blown out. Done alot of the above councillor, head of services crap but in the end they all back off. DH is in denial hoping that it will all blow away, have been refused SA by LA and have yet 2 wks in which to appeal. have a brain tumour which adds to difficulties, as worry about the future. I understand your isolation have been to doctor who prescribed one weeks worth of diazepam to help with anxiety and sleep difficulties. this has helped. I would seriously put request for SA find out if your entitled to legal aid.

It will cost me my last penny in savings but have sought legal representation for tribunal. Ask for a counselling to help work through your problems in confidence. don't threaten anyone anymore you need to take action and get some help/ emotional support, parent group etc . La's are aware of the pain they inflict on parents and hope that we will cave in. contact ipsea

We are blessed with caring for some very special children and its my belief that this requires amazing mothers like yourself, its very understandable that some days will be more difficult than other. Hope this helps

no your not your human we have feeling were not robots us mums are we you need a rest and recharge the batteries but i totally understand that is not possible or realistic i have no one to help give me a break either have you tried gobal mediation service:

global mediation ltd (sen)
elwood house, 42, lytton road
barnet en5 5by

0800 064 4488

[email protected]

there a free service and ask you to send or have ready 1, your name
add and phone number
2,your childs name & dob
3, your childs school
4, your local authority
5,a brief discription if in email of your disagrements
I got this from the EP office and a friend gave me one as they used them so recomended them

What do global mediation do, are they a parental advocate service?

Dh is largely in denial too, but also working ridiculous hours to keep the money coming in, so although that leaves me doing all the chasing, fighting, medical emergencies.

I have investigated support groups related to the genetic condition, but they are based in the US, there really isn't anything else avaible here. I do lurk on the american sites. You are right dolfrog in that I did not have a full dx until I was in my 20's, whilst my ds was dx at 20months ish, but because I knew what was happening and because he has many more severe symptoms than me.

Maybe it is because I am a teacher, I know what is supposed to happen, I know what I have always championed for my classes and schools, it makes it harder when ds doesn't get the most basic level of support, a school that meets his physical needs and reduces as far as pssoible the risks to his life and future mobility.

I should be able to cope with all of this, and stay sane. My self esteem and confidence should not be shattered by the unthinking ignorance or prejudgement of others, but it is. I should be able to lead my family through this dx and its implications, but I can't. Dh has mental health issues, he is quite high maintainence too, I have had breast surgery to remove a tumour earlier this year (this is fine now) dd2 has issues around her heart (although she is completely stable at the moment). Ds was turned down for dla earlier this year, mainly becuase they didn't understand the medical condition despite a lot of details I asked for a reconsideration, but left it at that and didn't go to appeal because I couldn't fight LA, NHS, DLA, surgery and keep the family unit together as well, something had to give. If I don't cope with all of this and more no-one else will.

they mediate they know all the legal rights they are the next step before solicitors ,you can go to them after trying to speak to senco the LA and parent partnership yourself ,they are free and neutral and independat of schools and the LA ,you can also try DLA again now i know its a lot to handle all at once so ask someone to help dont think (and i can tell from your posts your much better educated than me means ) you have to do it alone why not ask someone as i did the first time i filled out DLA i got welfare rights to do mine for me it took all the stress out of it there in amalgamation with CAB now but its so much better than spending as i see MNrs on here spending hours/days filling it out and worrying themselves sick over it , after the first time i now can fill one out in about an hour so used to doing them, my DH is disabled so im used to it so when i had to fill one out for my DS it was easy (groan) at thought of the new forms when they arrive though.but i know where your comming from on the dealing with LA,DLA,NHS its a nightmare you wouldnt wish on your greatest enemy at times it really has strained my relationship with DH and my two other Dcs who are teenagers (nightmare in itself) so maybe get one bit sorted at a time but for gods sake dont let them get away with that wishy washy sort of a DX

I did do the dla alone, and I think I probably didn't do ds justice, god it was hard to do, so negative. It is a nightmare isn't it, why do these organisations think that it is ok not to do their jobs properly.

Have just lost it with the toddler (dd2), I know she is tired, she had a bad night but I am just not coping.

you can only do your best and im sure you did there designed to try and trip you up and make you fail these dla forms and yes very negative the new ones are apparently written asking what you can do rather than what you cant but im sure they will be just as long and testing
be kind to yourself just say mummy is sorry and give her a hug kids are resilient and very forgiving. sounds like you need an early night maybe watch a dvd in bed or read a book in bed before trying to drift off if you can

i meant to add yea they are negative and i cried my eyes out filling it out for my ds wasnt upset when doing dh lol am i mean , but it seemed so real suddenly it upset me more than hearing the inevitable and expected DX that felt a combination of sadness & relief