when do you start accepting it all?????

[anniebear]

From what I have read so far, some of you have older children with Special Needs.

Can I ask, do you think you can ever accept your child's disability and move on in life? (pretty deep I know and it's past my bedtime!)

My Daughter Ellie fell ill at the age of 8 months, until then she was a healthy baby. She will be three in two weeks time.

Obviously I don't cry as much as I used to but still am at the point were I think it is all so unfair, why us? why not the horrible families who don't keep their kid's safe and don't look after them properly?

I wouldn't wish illness on any another child, but it seems really unfair when you see children in cars with no seat belts, young children playing out when it is dark, I could go on... Then there is us and plenty of others who do everything within our capabilities to try to keep our child as safe as possible and she gets a serious illness that leaves her with brain damage.

Do these, sometimes bitter, feelings disappear? I thought I would be accepting it all by now but I am not.

I feel like I have been robbed of my little girl and often think what she would have been like.

I am sorry to do a depressing e mail. I am sure many of you feel as I do.

Many people ask me how I cope. I just shrug and say "you just do" What else can you do?

That was such a touching message although an experience that i have not been through but fear it as any mother would do. Unfortunately i can't offer any advice but am here to listen and send you big hugs. May i ask what illness it was that caused such a tragic thing to happen? i think you have every right to feel bitter and angry, don't feel guilty for whatever emotions you experience. xxx

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She had Pneumococcal Meningitis

Thanks for your reply xx

Poor little poppet

"You just do" sums it up for me. It's hard to come to terms with the child you have, instead of the child you thought you had. It doesn't mean you love them any less, but readjustment takes time.

Dd1 had hydrocephalus, 2 heart defects, gdd, and at one point we were told she may be blind, deaf, and a vegetable, so to not bother with her. We cried for ourselves and for her, it's the only way to start recovering imo. She is a young ,vibrant, intelligent, beautiful,stroppy pre teen now, and all the doom and gloom went unfounded.

Ds2 was diagnosed with cerebral palsy aged about 16-18 months, he is almost 3 1/2 now. I knew in my heart what the problem was from about 7 m old, but docs kept telling me all was fine, and dh preferred to believe them over me at the time, saying that ds was just laid back. We (esp dh) still get upset and cry every now and again,but I think it's healthier than bottling it all up.

You have so many hopes and dreams for your children, it can be shattering when you realise that some of these may never come to fruition. I don't think it's been v long at all to come to terms with everything that has happened since your daughter was tiny tbh. Don't feel like you have to move on just because it has been x amount of time, go at your own pace. You obviously love your children so much, it's v clear from your posts, and you are v v proud of them. You are allowed to grieve as well .

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Sorry !

Kids Who Are Different by Digby Wolfe,

Here's to the kids who are different,

The kids who don't always get A's,

The kids who have ears twice the size of their peers,

And noses that go on for days...

Here's to the kids who are different,

The kids they call crazy or dumb,

The kids who don't fit, with the guts and the grit,

Who dance to a different drum...

Here's to the kids who are different,

The kids with the mischievous streak,

For when they have grown, as history's shown,

It's their difference that makes them unique.

Stand Tall

You are stronger than you think-remember to stand tall.

Every challenge in your life helps you to grow.

Every problem you encounter strengthens your mind and your soul.

Every trouble you overcome increases your understanding of life.

When all your troubles weigh heavily on your shoulders,

remember that beneath the burden you can stand tall,

because you are never given more than you can handle-

and you are stronger than you think.

-- by Lisa Wrobel

anniebear - I just started a reply to your post which I had to stop and delete because it was going to be of epic length and far far too emotional.
I'm afraid I can't answer your question. My feelings about my own dd are really still too raw. Day by day I think I am learning to accept it but I still have very bleak moments (and I really really am going to stop drinking because I don't think my dh should have to pick up any more sobbing drunk wrecks ).
A friend once asked me if having dd had changed me and I replied that I didn't think I would ever be truly happy again. Now I am trying to get to a place where I can accept not only my dd's condition but also my sadness about it. Because I think if I am honest I will always feel some sadness and anger about it. But I also know that I don't want that sadness to hold us back or get in the way of our family getting the most out of life. I suppose what I am saying is that I don't think I will ever truly accept it but I also think that's okay.

And that, believe it or not, is the shorter less emotional version .

With ds1 it has been something of a rollercoaster ride. At first I suspected he was somehow 'different' but couldn't quite put my finger on why, other than the fact that he just didn't seem to need sleep. Then it was as though someone had flicked a switch and suddenly he was a smiling, happy angelic little boy. I think I'd just about convinced myself that he was fine when his more autistic traits really started to come out of the woodwork. By the time he was 2yrs 6mths he was completely oblivious to most people, walking round and round in circles and didn't speak or try to communicate with anyone. I can remember the SALT telling me that he would almost certainly be going to a mainstream school when he was older and I thought that she was completely mad. Luckily I didn't tell her so! There were quite a few tears but I think I resigned myself to the fact that this was who ds1 was.

At about 3yrs old someone flicked that switch again. Ds1 suddenly started using words here and there. 3 months after that the SALT wrote in her report:

" laughed during today's session - something that I had never seen before."

It seems as though every time I start to accept one 'version' of ds1, something changes and he does something that really surprises me and the people around him. He may not be how I would've imagined him to be back when he was a baby but he is a million miles away from the person I would have imagined him to be back when he was a young toddler. The autism hasn't gone away but I think that if the autie bits of him were somehow removed he just wouldn't be ds1 anymore. It's hard to explain.

I wish that autism wasn't so difficult to deal with on a daily basis. I wish I could just decide on the spur of the moment that I wanted to go out somewhere or do something, without first having to hunt for the right symbols for ds1's visual timetable and then getting ds1 mentally prepared for the change to his routine. I wish that I could walk into a room/building with him and not have to look out for things that might act as triggers for a meltdown. But I think I've finally accepted that his autism is here to stay.

I've just been sent this today, which may help. Its a bit long, but worth it. Apologies if this has been on here recently, but imo, its worth repeating:
Welcome to Holland

When you're going to have a baby, it's like planning a
fabulous vacation trip - to Italy. You buy a bunch of
guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in
Venice. You may learn some handy phrases in Italian.
It's all very exciting.

After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands. The stewardess comes in
and says, Welcome to Holland.

Holland?!? you say. What do you mean Holland?? I
signed up for Italy! I'm supposed to be in Italy. All
my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've
landed in Holland and there you must stay.

The important thing is that they haven't taken you to
a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different
place.

So you must go out and buy new guide books. And you
must learn a whole new language. And you will meet a
whole new group of people you would never have met.

It's just a different place. It's slower-paced than
Italy, less flashy than Italy. But after you've been
there for a while and you catch your breath, you look
around.... and you begin to notice that Holland has
windmills....and Holland has tulips. Holland even has
Rembrandts.

But everyone you know is busy coming and going from
Italy... and they're all bragging about what a
wonderful time they had there. And for the rest of
your life, you will say Yes, that's where I was
supposed to go. That's what I had planned.

And the pain of that will never, ever, ever, ever go
away... because the loss of that dream is a very very
significant loss.

But... if you spend your life mourning the fact that
you didn't get to Italy, you may never be free to
enjoy the very special, the very lovely things ...
about Holland.

Anniebear {hugs{}} to you and all the other mums who have wrote such heartfelt messages.

From my point of view (my daughter is nearly 5) things are getting easier to accept and I am more 'used' to it than say 2 years ago when the feeling were very raw. The main problem I have is that my daughter still hasnt been diagnosed and we beleive her problems were caused by a mis-managed birth. We are having to get lawyers involved now to get her medical records and my obstectric notes because even attempts made by the genetic Dr to get them has failed I sometimes feel more angry than upset that she SHOULD have been normal and someone else may have caused it. I feel angry that if the hospital are holding her notes back and know they have caused, how do they think it affects our life day in day out? They are wasting 'our' time, it is cruel.

It must be really hard for you (and I dont mean that patronising) but the cause of your daughters special needs was illness, so you are bound to feel some bitterness about it. The 'what if's?' must seem worse I imagine. But from what you have said your daughter is doing very well and you will be proud of her no matter how small the acheivement. The last special school my daughter went to 3 of the children died there I always think, no matter how hard it is some days, at least I still have her.

I am just waffling on now. It is hard but at least you have people, like on the special needs section here who can relate to your feelings and be a sounding board. I am pretty sure joining mumsnet, 2 years ago, has helped me no end emotionally. Just knowing you are not the only one 'helps' and you realise your feeling are NORMAL after all

heartinthecountry, my husband often has to pick up a drunken woman(me, of course ) so you are not alone there!

Oh my god..not a good strart to the day,,all this emotion! I am fighting back the tears as I try to type a positive response- I may not suceed but at least you know my intention.
I think that everyone copes in their own different way and after reading this thread I am definate that it must be different to deal with one child's condition to another even though there may have similar needs.
My dd is now 2.9 and has Down Syndrome. Although I had my suspicions from the moment she was born, we were told proffesionally after a few hours.
This is our daughter, this is how she was born, this is the little lady that we adore and we haven't known her any other way. Every now and then I used to wonder, what of her is my dd and what is the DS characteristics, at the end of the day, does it matter she is who she is and we love her for being her.
I think it must be so much harder to have, what you think to be a NT child born & to end up with a child with SN further down the line. I don't think I've worded that very well, but hopefully you will know what I am saying!!
This poem was, I believe written for my dd when she was first born, it sums it all up for me.

I guess you must be feeling shocked
Perhaps uncertainty
and maybe for your future
you're unsure of what will be.
It must be overwhelming
such a massive fear to face,
like a roller coaster ride
you can't get off- they've upped the pace.
But please don't feel diheartened
though it must be hard I know,
I would have felt that way myself
till fourteen months ago.
But now I work with people
who've got Down Syndrome and more,
I have a different view on life
to what I did before.
I'm blessed to have the job I do
The people touch my heart,
They're so full of affection
and they're funny, bright and smart.
They fill me up with joy.
They see the world through different eyes-
-My nan discribes them perfectly
As "Angels in disguise"
They're so polite and trusting
Their love so freely shown
and most of the comedians,
a fact I hadn't known.
They have no hate or malice
they don't judge on what they see,
they take you as you are
and that is all you need to be.
And though naive and vulnerable
you worry some might harm,
it's that exact same innocence
that's all part of their charm.
i hope you can believe me
for I'm sure that you will find,
your little girl will grow up
to be clever, warm and kind.
It's changed my life completely
this is what i'm meant to do,
perhaps you'll be surprised
by the effect it has on you.
I believe firmly in fate
and think you've something precious there,
and if it wasn't meant to be
then she would not be in your care.

Dingle, thats a lovely poem, its brought tears to my eyes!

Going back to your first post anniebear, where you said 'why us?' We go there often but can you imagine some people looking after a child with SN. I know many who couldnt cope, so maybe thats why we have been given them. Not that I am an angel or anything but I was accepting of special needs conditions long before I had my daughter. Mind you, I have also met people who have got SM kids who cant cope aswell and I do go through periods when I feel I 'cant' cope. usually appointments etc are the worsed!

off to polish my halo now

worst! sorry about my spelling/typing/grammar!

So very well written all of you. ... don't think I can add to it at all. My feelings are still very erratic, particularly around appt times (todat for afa splint) as Fio said. I wept for what i had 'done' to my elder daughter and what the effect of having an sn sibling would do to her. Still don't really think dh has truly accepted it if i'm honest.

If someone had told me 5 years ago that I would have a child who was disabled I would have told them I wouldn't be able to cope with it. I don't think I believed that I would really love a child with SN. To be honest I always felt really uncomfortable about disability. I realise now that that was mostly because I just didn't really know anyone who was disabled and I guess it was fear of the unknown (one of the reasons I am pro-inclusion now).
But what I hadn't counted on was the love I would feel for my dd no matter what and how that would be so strong that I infact wouldn't question whether I could cope or not, I just would. If people ask me how I cope I just say "she's my daughter".

PLEASE stop posting those awful poems.
anniebear, will post later but no time now and far too upset. Really feel for you {hugs{}} (rare from me )

My ds2 is just 3 and clearly has some problems both with his motor skills and communication although I don't know what the cause of them is and that also means it is harder to predict what the eventual outcome is likely to be. I felt that his development was a bit behind from when he was very young and I think I was acutely aware of it because my ds1 was quite advanced especially with language. When I first took him to the HV and said I thought he had problems I expected to be reassured and was quite shocked when she looked at him and said she agreed he should be seen by the paed, even though I would not have been satisfied if she has tried to reassure me.

I certainly haven't come to terms with the situation at all yet. I have progressed a bit in that I can manage to talk about it most of the time without bursting into tears and I have realised we have to get on with living. But I feel like a cloud is hanging over us the whole time in the background just taking the edge off everything.

Also I feel resentful and I feel guilty for feeling resentful. I don't feel resentful towards ds2 but I have the "why us?" feelings you describe. Ds2 is now at an age where things should be getting much easier, and I feel resentful that they are not. I also feel sad for ds1 who wants to play with ds2 so much and has trouble getting him to join in and understand what to do and for ds2 who loves to play with his brother but keeps getting it wrong.

I think it makes things worse not having a diagnosis. It means I don't relax, I am constantly analysing his behaviour - was that echolalia, why can't he understand that question when he can understand this one, why can he do this puzzle and not that one etc etc. That's no fun for either of us, and it has spoiled a lot of my pleasure in him as a child. Also drives dh mad!

I also feel guilty for minding as much as I do. My son's problems are relatively mild compared to a lot of children's and I am nothing but full of admiration at the positive attitudes and patience shown by the parents on this board.

I understand the feelings you describe, anniebear, about it seeming unfair when other people neglect their kids and they are still okay whilst you look after yours and they are not. But with this I try to think it is better that I should have a child with special needs because I will do my best for them, than someone who is going to neglect them. Also I am privileged in other ways - for example we have a big house and garden and are reasonably well off, which makes it easier to look after a child with special needs than if you are stuck in a high rise flat. I am not trying to say that I am doing a better than someone who doesn't have these things but that in some ways it should be easier for me to have a SN child than for other people. I think I am trying to say a similar thing to Fio2.

Sorry I have gone on long enough. It is comforting to know that everyone else has similar feelings. You all seem so positive and coping so well (which is good) but sometimes I feel I'm the only one who feels like this.

I read this earlier today and went away for a think........

anniebear, you probably have a couple of separate issues going on here. Getting used to the day to day things and accepting that things will always be 'different' and also getting over the huge trauma that you went through when Ellie was critically ill.

Like you I thought I had a healthy child. She had two heart attacks at 3 months and was in hospital for weeks, many of them in ITU. That was 10 years ago and our day to day life now is quite calm, different in many ways but not a trial everyday like parents of ASD or ADHD children, I can get in the shower when I want to or go out on the spur of the moment, like coppertop says. I have accepted this life, yes I worry about her future as her health will deteriorate I have no doubt. I've wept for the child I thought I had. I have down days and days when the tears come, but generally speaking I'm fine. I know I'm lucky in many ways - she's here with us for a start. I find the memories of the initial illness and the time immediately after much more difficult to deal with and still cannot talk about it without tears. Even as I type this my hands are shaking and my heart is pounding.

You will get to a stage where you feel more accepting but it will come in its own time, when its right for you. Feeling anger and the unfairness of it all is part of it. Don't be rushed into 'moving on' if you're not ready.

Hugs to you

Anniebear - you've voiced all the thoughts that I've been having on my drive home from the hospital today. My dd is 4 months old and has a mixed bag of problems, but ultimately her dev is delayed. I'm finding myself grieving for the baby that I thought I'd be having all through my pregnancy, but at the same time I love my dd to bits and am very proud of her.

What I find tough at the moment is being surrounded by new mums with their NT babes - some of whom have been really thoughtful, others telling me of concerns that in my mind aren't really important at all. However, I guess their concerns about their babies are as real to them as my concerns are about mine & I need to accept that. I also know that my dd's problems are on the milder end of the SN spectrum and that I should be focusing on the positives rather than the 'what she can't do yet'. I wish we had a crystal ball that could predict her development & progress, but sadly we just have to wait and see whether she will stop deviating away from the norm.

I do struggle with people telling me to 'get on with things'. Whilst I'm not weeping at home every day I do find it's a rollercoaster of emotions, some days will be great, others not so. I know I need to let the grief go, but I think everyone has their own way of dealing with the sadness, anger & anxiety, and I know I need more time yet.

Thankyou for posting this, and everyone for their replies as reading them has made me feel less lonely on a day of horrible hospital appointments and diagnosis. Hugs to you all. Off to crack open the vino ....

Another one here who has one too many vinos on occasion (hmm we need a drunken emoticon!) These are all lovely messages and hugs to you anniebear.

It's now coming up to 2 years since the paed confirmed that dd2 (now 3) has global dev delay and microcephaly. We don't have an official diagnosis but for some reason I don't really mind this, as it means no one really knows what dd2 could achieve and this could be very positive.

The worst time for me was the first 18 months which was when we had to gradually come to terms with dd having SN - a real rollercoaster ride, is she, isn't she. Having confirmation almost made it easier, although it was terrible at the time. Now also having positive therapies to do helps, rather than being alone just waiting to see what might happen.

I worry about dd1 (age 5) and the effect on her - we aren't likely to have any more children, so feel in a way as if she's an only child in that she doesn't really play with dd2. Also don't want her to feel obliged to look after dd2 in the future, I want her to have her own life.

Perhaps I haven't really accepted it yet, as I keep trying to take dd2 along to dd1's school events (eg Sports Day, School Fete) and be like other families. dd2 is very unhappy and cries a lot - everyone stares (one person even offered me a rounders bat and said jokingly perhaps you'd like to use this to keep her quiet ) - it's thoughtless comments in difficult situations which are the hardest to deal with for me.

btw dd2 is only very unhappy when out in big, busy crowds in strange places - she is usually very cheerful!