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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I'm so sad . I feel like i've lost her.

65 replies

Floopytheloopy · 03/02/2011 14:27

First of all thank you for reading.

I have a dd(4)who is more than likely on that very broad and varied autistic spectrum and each time I think i've got my head around the probability I lose it again and I go into mourning mode. I wish I could just snap out of it and pull myself together. But like dd doesn't have the tools to do certain things, I don't seem to have the tool to just move on and accept it.

I've had my concerns about dd for a long time now but it was the classic situation of family members and hv's saying that she was just behind and that she'll catch up etc. Pre school showed their concerns and she has recently started foundation class at school. This is going ok. We have a home/school book as she has had a few tantrums and sometimes been very defiant, but never the less, it's going better than originally assumed.

You're probably wondering why i'm feeling so low if things are going better than originally though. Well, dd seems to have becoming more aggitated at home and her tantrums, although much shorter, are much more intense and for completely bizarre reasons(to me anyway).

I don't want to dwell too much on her behaviour as much as my feelings. I can't get over the fact that i've essentially lost a daughter that I assumed I had. I try to get things sorted in my head and then I just think "will we ever go out for coffee and talk about boys when she's a teenager?......will she have any friends atall?will she get married, or have a job?" The second these questions come into my head I burst into tears and I feel like i've been hurtled back to square one again. I can't bare to think that this is just going to be a constant life long struggle for all of us. I can't stand the thought of people making fun of her and laughing at her disabilites, which thankfully at the minute she is blissfully unaware of. I see them though and it's like someone has just shot an arrow through my chest everytime.

Everyone always said it would get better, but the older she gets the more apparent things are become, so therefore does this not mean it gets harder?

Any words or comfort or experiences would be greatly appreciated.

I'm sorry if I have rambled on, but was really struggeling to cope.

Thanks again.

OP posts:

coff33pot · 08/02/2011 18:07

:( sorry to hear you had a horrible time Lifeintheslowlane.

Are they really that horrible in CAMHS??? I have yet to get a phone call for an appointment. It would be good to have an insight as to what happens at those places.

And you are not rubbish...........rubbish mothers would ignore there dc and not get them help :)

LifeInTheSlowLane · 08/02/2011 18:22

Thanks Coff33pot! No, the camhs lady wasn't really that bad, feel awful for saying she made me feel that way, it wasn't her fault . It was just ME feeling inadequate I suppose. Although I know I shouldn't, sometimes I can't help thinking it's all my fault

coff33pot · 08/02/2011 18:43

Ah I see! Well for what its worth I was doing that yesterday and only this morning I was telling my DH that this is my fault and some of my traits have rubbed off on him and he is suffering for it. ie I am not the most patient of ppl and although I can do things like accounts every year I tell my DH I am no good at this. Neither do I live in other ppls houses for coffees and chats etc This is the reason I registered here. I have been used or hurt too many times to trust talking to others other than the world is ok and everything is fine talk.

I think we all go through thinking that it is us that have made our DCs this way. Also guilt as a mum that you cannot take it away and make them feel better as it is a mums job to protect and there is nothing more annoying that not being able to help your child and having to ask for outside help. :)

My DH just hugs me and tells me to buck up lol and mentions my other two DCs and said if it was me then they would be all the same as they have been brought up the same.

Soooo my girl you need hugs and chocolate! :o

dietstartstmoz · 08/02/2011 20:25

Hello, i'm also going through this grieving process, DS aged 3.5 and will prob have a dx of ASD. His nursery first raised concerns in Nov and things have moved quickly since then,. Have seen paed once (no dx, have to go back early march) we are getting support from specialist early years service and Ds has an IEP and is school action plus. We are undergoing SALT and are waiting for a hearing test. I think I have cried everyday since Nov, and still can't tell some people what we are going through, it's still too much for me at the moment. It's so hard, i'm just heartbroken and can't get my head around the future.

coff33pot · 08/02/2011 20:43

@ Diet..I really do feel for you BUT stop thinking about the future. You havent been there yet and cannot predict what is going to happen :)

Just concentrate on your lovely DS and pat yourself on the back that you have all these plans/peads etc in motion as he will only benefit from it!

Your DS will learn abilities to cope with whatever comes his way I am sure and with your support he will be bound for a great future! :)

Anna85 · 08/02/2011 20:57

My DS is 5 and was diagnosed in September. I knew from a early age something was not right! Different people saw him and had mixed views as sometimes the problems were noticable and other times not!!

I felt like you during that process of getting diagnosed and I often said I was grieving.....but that all changed when I got a diagnosis. I felt totally different about him and that I could manage him better and it was a positive thing.

Like most people say you need a diagnosis to get any kind of help and support!

Good luck with it all x

Davros · 08/02/2011 21:37

Oh dear, psychotherapy for parents of a child with probable ASD, inappropriate imo and ime.

coff33pot · 08/02/2011 22:01

Davros?? You have lost me?

Davros · 08/02/2011 22:27

Referring to Lifeintheslowlane at the top of this page although I think she may have meant the therapy was for her DS which could be helpful.

coff33pot · 08/02/2011 22:43

Ah! :o

only1lucylocket · 09/02/2011 08:57

It is so natural to feel like this, it takes time to come to terms, we never imagine our children will be different, and it hurts so much when they are.
Maybe with a diagnosis, you may slowly start to cope, and you might see some positives.
Our boys were both born with a degenerative condition and along the way came across some hurdles where we had to grieve. Both boys have passed away aged 10 and 12 (Tom 17.9.98-13.12.04 and Harry 10.8.98-17.12.10) and we have grieved for many years not just following the loss. They both had fantastic lives which I think was due to the difficulties so nothing stopped us.

AJcat · 09/02/2011 18:54

Hi Floppy,I am another parent who has gone /still going through that process but to be honest my DD 10 was dx last September and now after an initial shakey start with the SENCO and I quote "Well she has done alright up to now without a dx" the school has put some stratergies in place that are really helping. Before she was just drifting and going un noticed as she is very well behaved at school but it was obvious that she was falling behind her peers. She is now producing completed pieces of work instead of 2 sentences and is having help with her social skills. So from our experience it is a positive one, as many people have said on her it opens doors for support. You will get there, just take it one day at a time and don't be too hard on yourself. Keep posting on here you will get loads of advice, I have and am very grateful to everyone for their time and knowledge.

daisysue2 · 10/02/2011 12:03

Hi Floppy

I just wanted to offer my support to you as I have been through everything you are going through now and am out the other end.

I was just on the phone to my best friend last night whose ds has just been told by nursery that he needs to go to a special school. She is at the begining now as you are. I am at another stage my dd is 11 now and I have been through, I would say, 7 years of mourning, fear, and fighting for her SEN at school and everywhere else.

Fast forward 7 years and I have an amazing dd who is doing so well. We talk over a cup of tea about boys and friends. I never thought she would ever have a real friend at school, now she tells me she is so fed up as her friends are fighting over who is her best friend. She has had boyfriends. These are all things I never thought would be possible.

I've just come out of hospital and she made me a big sign saying welcome home mum. She made a curry from scratch the night before last for the family so I could rest, she wants to be a chef.

So all the dreams I though I would never see are happening right in front of my eyes and I am so proud of what she has achieved. It is worth all the battles and fights with schools, LEAs getting the right services.

When I first had the diagnosis the only thing I could think about was the worst possible outcome and what I had lost. But I have gained so much from my beautiful dd they are just different dreams.

lingle · 10/02/2011 19:48

apologies, I know you have done lots of research already, but have you worked through the Hanen "Talkability" book? It is aimed at the friendship issues.

I used to feel fine (well, mostly) about the language problems but the friendship thing got to me (reminders of own social isolation in childhood,etc,etc).

"Talkability" was good because it treated these friendship problems as just another project, rather than as the thing that you dreaded and feared.... you worked on it slowly like you would with language problems or potty training problems. It took some of the emotional heat out of it.

mum2GKH · 01/03/2011 13:45

lingle, our SALT just recommended this book this morning and came across this thread, did you buy it from Winslow, just looking online now.

Floppy have only skimmed through the thread, did you find out about your local NAS branch? I totally know where you coming from, my DD is 4 too and I feel everything you do. I pushed myself to go to a meeting of our local branch which luckily was just down the road and I'm now on the committee and we organise lots of things for the kids, days out, cinema, bowling etc. It's made a huge difference having that understanding. Where in the UK are you and have you looked on the NAS website. And you definatley do not have to have a dx to join or does it cost anything. Take care

Flip

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