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Here some suggested organisations that offer expert advice on SN.

Do you ever get past the pain?

(14 Posts)
boohoomum Fri 07-Oct-11 12:02:46

I've name changed as a few people know me in RL, but I've been a poster here for a few years.

On the outside I've perfected a very happy positive front to all my friends and family, (to my parents they have seen the odd wobble but nothing much). My DC has lots of therapy input and 1:1 help at school. I also do therapy every day with him. As far as everyone knows I love my life!!

Inside I'm scared and I hurt all the time. I'm scared that he will never have a friend, I'm scared about schools, I'm scared about him being bullied, I'm scared I won't always be there to help and protect him. My heart breaks when I see his peers running around together playing without a care in the world and he is on his own.

I just hurt so so much and I know that many of you, if not all will know how I am feeling, or at least relate to it. I only have 1 sn friend and her DC is very severe so I can't moan to her as she has it worst that me.

DH is great at a practical level, but emotionally not switched on at all. He doesn't feel the worries that I do.

How can I make my happy positive front be on the inside, I want to stop hurting???

insanityscratching Fri 07-Oct-11 12:23:21

I'm not sure that the pain ever goes tbh. I manage to bury it successfully for the most part although sometimes it rears up and bites me on the bum. I too have perfected the brave front, I think because that's what people want from you, they don't want to see the realities I don't think.
I don't want to be seen as vulnerable because how can I be seen as a force to be reckoned with in the constant battles that we experience if I appear as though I am falling apart?
I take joy from the here and now and relish every good time but I think being happy and positive as a default option is more than I personally can manage.

imogengladheart Fri 07-Oct-11 12:27:21

Message withdrawn at poster's request.

FauxFox Fri 07-Oct-11 12:35:33

My DS is 6 now, he was diagnosed with ASD when he turned 3. Around that time I spent 2 weeks crying literally all the time, not eating, not sleeping etc i was a mess. Then I stopped and decided that although DS will have a different life it need not be worse. He is very happy, it is my job to make sure he stays that way and I WILL succeed. I am not sad for him, when I cried it was more for my lost dreams, now I look to him and what he can/likes to do and do all i can to make sure he reaches his potential and has a lovely life.

It's how I chose to see things and I look forward to seeing what exciting paths he will lead me on smile

cansu Fri 07-Oct-11 17:24:16

I have also perfected the front and am extremely good at getting what my dc's need (both ASD). However, I am also permanently sad about the shit I and they have to deal with. I don't think it will ever go away for me. I thought initially that it was just me and that most people seemed to just get over it eventually or 'come to terms with it'. I don't think that is necessarily true. In the end though you can let it swallow you up and have a shit life or fight to enjoy some parts. I find wine, my friend who has a severely disabled ds and my work kind of gets me through most weeks. I also try not to think about the future too much and avoid things that will make it worse like chatting with mums of NT children as this tends to remind me of all the stuff they can't or won't do.

coff33pot Fri 07-Oct-11 19:11:45

I am a good liar to the outside world and when my kids are awake. Only when I am on my own do I let my guard down. I have acquaintances and two friends one lives far away and the other I am married to. I used to go out before DS was born but gave up due to the pitying looks that did my head in or the convos about their kids and then they stop and check themselves then look at you and try to change the subject. I dont know anyone with SN children at all so the good people on this board is my link into that world where I learn from.

I dont think how you feel ever goes away. Maybe when I know what its all about with DS and I can actually put all this fighting authorities and proffs behind me it just might settle.

boohoomum Fri 07-Oct-11 19:25:21

Thank you very much everyone. Most of the time I am ok, but as you say insanity occasionally it just gets you and bites you in the bum.

fauxfox - I hope to feel like you. Most of the time I am happy, but you are right I think I cry for 'my' lost dreams. He is actually a really happy content little chap which I should be very grateful for.

imogen There aren't any groups around here but I would give it a go. There used to be one which I went to, but due to my "strong, I love life" front I was the one everyone confided in, and I'm not good at opening up face to face. I like being anonymous on here.

cansu I'm trying very hard not to let it swallow me up. Unfortunately all my friends have NT kids. They are very good friends and always make an effort for their kids to be friendly to DS, but you can see over time it's now being forced upon them and it just hurts. I definately need to stop looking to the future as this is what gets me down the most. Right now it's all good. Great provision, statement, help etc. I actually don't have anything to complain about really.

I think it's time to stop wallowing and slap on my happy front again. There's a lovely thread at the moment about what our children CAN do and at the end of the day this is what really matters.

boohoomum Fri 07-Oct-11 19:32:22

cross posted with you coffpot. I do have friends, and good ones at that but that's exactly what they do. They tread carefully when talking about their DC, which in some ways I want them to as I can't stomach it when they talk freely about what they're doing, their friends etc. I'm so unbelievably jealous that their kids make friends so easily when my DS doesn't have 1 (only kids of mums I happen to be friendly with).

I don't think that you ever TRULY get past the pain, but it doesn't consume your every waking thought forever.

My DS2 is 14 now and most days I genuinely don't think about his disability. He's just himself. Day to day we enjoy life, do the things we enjoy and have totally accepted that his life is how it is ( he's autistic with learning difficulties, hypotonia, goes to a special school etc etc). When he was small the pain was terrible.. would he walk would he talk, and each milestone was fraught with anxiety.. years later I am able to relax and accept that he will never be like his siblings, that he will probably always be dependent and lining up his pens in another room instead of being out with friends... and it's ok.

But just now and then the most random things jump up and hit me with a wave of pain.. daft things. A couple of months ago he was excitedly talking about Father Christmas.. I glanced at him and noticed he needed a shave... and a fresh wave of grief hit me as I thought about how I had a 6 foot young MAN who still believed in Father Xmas like a 6 year old.. how he would always be a man-child.. and it hurt so badly.
BUT those moments are fewer than they weresmile Birthdays, milestones that may never come.. reminders of all that should be and never will.. yes they hurt, but then I shake myself and remind myself that whatever will be, he is loved and ours..

It has also helped me to join groups (I personally recommend www.specialkidsintheuk.org/ where everyone GETS it.. everyone understands ..like here too...smile

BakeliteBelle Fri 07-Oct-11 22:35:11

I have found solace in a group of SN families. It hasn't all been friendly all the time - there are tensions like in any group - but after years of feeling really on my own in this SN world, they have been a life saver. It is like finally finding someone else who speaks your language.

I don't expect NT families to get it, they simply can't, but you might find that you can drop the front around people who understand you and who are strong enough not to lean on you.

Why do you think you put on a front all the time? What would happen if you revealed your true feelings?

LaydeeC Fri 07-Oct-11 22:41:30

For me, no, the pain has never gone away. I have however, come to terms with the fact that I will never come to terms with it iykwim.
I find being around a couple of friends with nt kids very very difficult because I am bombarded with their children's successes. I should celebrate them and really try hard to but generally feel gutted and heartbroken that my son grows ever more isolated whilst his friends from birth develop, spread their wings and grow further and further away from my boy.

SOTIRIA Fri 07-Oct-11 22:51:54

As I'm typing I can hardly see through tears as I'm having a bad day. However, I am blessed with several friends and acquaintances who have children with SN. i try to be open about our son's issues and I have found other families sometimes open up once I have been honest. They may have children with issues or know someone who they put me in touch with. I remember laughing with my friend as she described a disastrous day at the zoo. It really helps to share our difficulties in person or online.

boohoomum Sat 08-Oct-11 20:06:57

Thank you all.

medusa it's good to get your perspective and see that it gets easier as the years go on. Ds is 4, so all quite raw still. Thanks also for the website, I havn't heard of them before.

bakelite if I dropped my front I think I'd cry and never stop. Plus, noone likes a misery guts. I really care what people think, I always have and I like that everyone thinks I'm this super mum that can deal with anything. I'm the one people lean on and come to for advice.

laydee Like you, I struggle to look pleased when my NT friends kids have achieved something or got too many parties to go to and can't decide which one to choose (Oh poor them).

sotiria I hope you're day has been better today. It's been so long since I was open and honest face to face I'm not sure I even know how anymore. mumsnet has definately been a lifesaver for me.

Had a better day today which has helped, DS went to a party and coped brilliantly, no outbursts and we made it through the whole thing. I'm grateful for that as this is a break through for him.

Thank you again everyone xx

SOTIRIA Sat 08-Oct-11 23:11:47

I've had a better day thanks. I'm so glad that the party went well. It sometimes seems that our Ds will never achieve the same as NT kids but it's comforting to realise that they can sometimes do things that we never thought possible. May there be many more days like this.

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