Just having a sad moment

[ShadowsInTheDarkness]

I am just having such a shitty day. Filling out a form for my daughters EHCP thing and having a little cry. I have realised recently that I need to accept that I cant just say "she has x condition", I sometimes need to be able to say "my daughter is disabled" and that's so so hard. Everytime I write it or say it my eyes leak. I've had to write one of those long spiels - "a brief history about your child" detailing all the ways in which she struggles. Then there's this section about what you want them to be able to achieve in the future and I just want her to be happy. That's it. I want her not to worry, or be anxious, or to have to be brave and strong. I mostly just want her to be ok, but she isn't going to ever be ok is she? Ugh. Have no idea why I'm posting, I just needed to get it out somewhere.

Anyone in a similar boat? or having a sad moment?

Oh OP, I've recently done this myself. It's heartbreaking. Don't feel bad for feeling sad about it. It is sad. But then you also have to keep in mind that an EHCP is such an important thing when a child needs one, and the fact that you're doing this for her is really very likely to improve her outcomes greatly.

and or for you.

Yeah i know, we have fought so hard to get to this point as well. I don't think I can fill it all out in one go, i have to keep walking away and then coming back to it or I get too emotional and feel it needs to be accurate but concise. I do like that the form enables you to talk about their strengths and what they enjoy - it seems so rare to be able to talk about something other than the issues. Its bittersweet though because its sandwiched between pages of detailed descriptions of every aspect of life that she finds hard. All in one place like that makes for pretty hard reading.

I'm sure that nothing I can say will help but 🌷🌺🌷 for you both. X

It is hard going filling the form out and I couldn't do it in one go.
I am a bit sad because one of dd's very few friends isn't responding to her texts but I saw the friend at the bus stop tapping away at her phone. I guess we won't see her over the holidays then...

Alun we luckily aren't at the age for phones etc yet but i'm dreading it. DD already struggles with friendships and I think that's just going to get worse as she gets older and her differences more obvious. I worry so much about her childhood being lonely. Teenage friendships are horribly complicated as it is!

I've been there, it's heartbreaking.

Almost like grieving I think, writing down all the things your child can't do just reminds you of all the things you were looking forward to doing as a parent and then realising it will never happen.

Worrying about the future non. stop.

I remind myself daily, that I am very fortunate to have a healthy happy child and that things could be much worse.

This will hopefully get your child the support they deserve.

Stay strong

Yes we're buckled in for the teenage years and hopi and we are are still standing at the end! The friendships (or lack of) are such a minefield. She is a bit lonely but she equally needs (some of) the solitude to cope with school.

Needcoffee Yes that's exactly it, although I hesitated to use the term grieving as I'm aware I'm so lucky to have my lovely girl. I definitely think a lot of my upset today is about letting go of this idea I've had in the back of my head that she will just grow out of it, or get better somehow. I know that's so stupid, I obviously knew it was impossible, but I think chose to allow myself to be a little bit in denial because, well, it's easier isn't it?

It's very hard to embrace the full truth, when she looks so normal, and everyone on facebook is showing off their childs ballet awards and amazing school reports.

I should probably seek out some kind of local support group if such a thing exists. Just a few comments on this thread from people who get it has made such a difference. Thank you.

It's really ok to think of it as a kind of grief...obviously there's not the horrendous physical loss but there is the loss of what we thought would be. The future is now not only not what we thought, but not do we have any idea what it might look like. It's scary.

*nor do we

Everything you've said resonates with me.

When friends suggest we go to X and I know my son will not be able to tolerate the noise/crowds, when he doesn't get invited to any parties etc, it's hard! But we celebrate the small victories.

I really hope your application is successful.

X

Yes fly I really agree with the future being scary. Every year that passes the gap gets wider between her and her peers, and I just don't know what life will look like for her in 5 years time. YY to the not being able to go to x Needcoffee even from friends and family who know her diagnosis. There just doesn't seem to be any real understanding of how much of her life is impacted, and I don't have the strength to keep explaining.

I think what I'm getting from this thread is that I need to accept not just her diagnosis, but my responses to it - that its ok to be sad, to find it hard, to grieve for the childhood and life she wont have, to admit that I'm scared for her future. I guess owning all these hard feelings makes us better able to be their safe space and support and advocate doesn't it?

Been there and worn the t-shirt. If you ever need any help with the EHCP then PM me. I've become something of an expert and happy to help as many as I can

To be honest, if you aren't crying by the time you've filled the form in, then you haven't done it properly. It is well and truly shit and I would have several feeling very glum for a few days afterwards. But..it got him what he needed so much so, that that child, who has, on last count, seven conditions ( every little helps), now has a full time job, can travel anywhere on public transport, drives his own car, runs his own bank accounts, hopes to buy a flat one day and has just shimmered downstairs to make risotto for tea. He still needs our support and I'd be lying if I didn't say we both worry about the future. He doesn't have the same social life as his younger brother and although he would make someone a brill husband, I fear the liklihood of him having a romantic relationship is dim. But, if you had told me, when I was filling out those forms and crying, that we would be in this situation now, I wouldn't have believed you.

It's all been so much better since education finished! Do cry. It shows you are a fab mother doing the very best for their child and putting them first.

Just off to remind him to slosh wine in the risotto

Oh Flying he sounds amazing, it's really nice to hear from someone at the other end of the journey if that makes sense? I really hope one day I'm writing a post like yours on someone elses thread who is where i am now. Also nice to be told to cry!! Thank you

BurnedToast thanks so much, I'll bear you in mind if i come across any bits I need a hand with.

Flying he sounds great!

I think what I'm getting from this thread is that I need to accept not just her diagnosis, but my responses to it - that its ok to be sad, to find it hard, to grieve for the childhood and life she wont have, to admit that I'm scared for her future. I guess owning all these hard feelings makes us better able to be their safe space and support and advocate doesn't it?

^ absolutely right. You're spot on. Some days I'm fine, some days I'm angry, some days I'm jealous of other people and their NT DCs, some days I'm just numb. It's all fine, and it comes with the territory.

@Flyingarcher He sounds incredible. You must be so proud.

And OP, it took me a long time (and a few threads on here) to learn that it's totally ok to say no to things that aren't going to work for us. I had to realise I couldn't parent him like a NT child. Which is painful, but in the long run life has got easier since I just say no to some things.

I think its totally okay to grieve for the childhood she wont have. Its the reality and it hurts. We can as parents be proud of their achievments whilst sad at what they cant acheive, all at the same time. I often find my 7yr old DS can do more than the 17yr old DS without all the anxiety and stress. I watch him with fascination as its almost like a totally different childhood.

I am in the same boat, had a diagnosis 2 weeks ago and it has knocked me side ways. I am grieving for the life she will never have and the new unknown future.
I can't stop crying and generally feel low xx

Thank you all. Flyingboy drives me potty not infrequently but he is pretty marvellous. Having an EHCP opens so many doors when they are older to social care. His package paid for a PA to go on trips with him. That's what helped him gain some independence and he was looked after in jobs by a fab group who provide someone to work alongside them for the first few days and then liaise with the work place. We couldn't have done it without them. Queen Elizabeth Foundation driving assessment was also paid for to see if he was capable to drive.

There is a lot of stuff out there but no one tells you about it.

Risotto was, as usual, yummy. His life skills are so much better than his younger brother's. Having an obsession with washing machines and hoovers when little has paid dividends in terms of housework getting done. The best thing is his sense of humour and word play. He's not supposed to be abke to do that but he can, does and is very witty.

Your children will be brilliant too. It's other people who are the problem!

I'm sorry you are having a bad day OP and I'm sorry your daughter will have to face some extra challenges along the way. Don't forget that you daughter has something that many other people don't and thats a mother like you who clearly adores her and who is going to do everything possible to make sure she is as happy as possible. 💐

Hi OP my DD is 5 next month and I completely understand where you're coming from. We recently had my DD's EHCP amended and had a formal meeting with the school and various agencies involved and I cried bucket loads. When I'm alone and reflect on it I still feel glum and it happened in April.
When it's written and spelt out in black and white it's difficult to bury my head in the sand and think think for awhile that everything will be fine. My DD will be going to a resource based school once a place is found and I am very much grieving for what could have been.
Like your DD when you look at her you'd never know and socially she is really coming along and I am guilty on occasions of just wanting her to be able to join in the same activities as her peers.
I'm hoping that a change of placement will give her the support she needs to flourish but she is so happy at school I feel so bitter that she is unable to attend mainstream as she is so bright when she focuses.
It's ok to cry OP. It shows that you care and that makes you a good mum.
I hope you manage to get your EHCP