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SN children

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Original poster

Feeling low...

19 replies

Pages · 26/04/2005 12:18

Have just spoken to the Area SENCO (Pre-school teacher counsellor) re getting the statementing process moving for DS and she agreed he looks like a boy who needs a statement, and mentioned his "interesting cocktail" of needs (he has developmental delay, but doesn't fit into any category, have a particular dx, etc.) It was me who rang her to speak to her about ABA and to try and get things moving, because everyone had a couple of months ago said how well he was doing and lets wait and see. But it still hurts to hear it confirmed.

I know in my heart that he needs help and want to get it for him, but I guess having her agree with me has brought it all home that this is real, he is not making progress as quickly as he should be, and now I am dreading telling DH that it is all going ahead (the statement process) because he is so much worse about DS than me, needs constant reassurance that he is going to be alright (from me) and gets very down about him, and then I will have his emotional needs to contend with as well as my own.

I am posting from work, which I never do, but I just feel like crap at the moment. I have told my brother we aren't coming to his (NT) DS's birthday party because his (NT) DD is the same age as my DS and I can't face seeing her. I feel awful for feeling like that, but I am mad at him for having NT children and sailing through life as he always has when it has always been such a struggle for me.

I'm not normally like this, so sorry for whingeing. Please can someone tell me something positive.

OP posts:

Thomcat · 26/04/2005 12:23

Well babes, the positive side is that he'll get the one on one help that he'll benefit from. It's always so hurtful and difficult to have thigs confrimed and to see thing in black and white. Remember though that nothing has changed, not as far as your little boy is concerned. Your just one step nearer to getting him some great support at school and that's a good thing.
I'm sorry babes, I hth a little bit.

Jayzmummy · 26/04/2005 12:45

The pain you feel because you are hurting at the realisation that your son needs help is proof that you care.

Thinking of you.

Fio2 · 26/04/2005 12:46

well at least with the statement you know he will get more help than what he would without it. Sorry you are feeling so down pages. It really is hard when your child has no definate diagnosis and doesnt 'fit' into anything. You do also start to feel resentful of people who have an easier time of it then yourself especially family, who seem to carry on as normal and dont acknowledge you are having problems. just try to keep away from your brother for a while, until you calm down and get your head together. Sorry you are so down, its swings and roundabouts sometimes isnt it?

KarenThirl · 26/04/2005 12:57

Yes, if the statement goes through he'll get the help he needs and that's a very positive thing. As for dh, it seems to be harder for dads to come to terms with their children not being perfect, so you're not alone there. He'll get used to it but it will take longer than you.

Blossomhill · 26/04/2005 13:01

Pages - hugs to you xxx

I felt exactly the same as you with regards to a statement and can remember vividly how I cried my eyes out when the sn playgroup said dd needed to see an EP. I was adamnet she didn't need one as she wasn't mad (I can laugh about it now).
All I can say is that since having the statement dd has progressed so much. It is basically securing the things that ds needs to help him progress. My dd has come on so much since she has had hers and the thought now of them taking it away fills me with fear.
It does hurt as it is facing up to things but I promise a statement is such a positive thing.
Blossomxxx

MandM · 26/04/2005 13:15

Pages - I know exactly how you are feeling, as I'm sure must of the SN mums on here do. Not that that makes it any easier for you, of course.

It is so, so, hard when someone confirms what you already know about your SN child rather than telling you everything is fine and the problems will just float away (which you know they won't but are still somehow secretly hoping they will). I can remember feeling just as you've described when dd's statementing process got underway, but at the same time I knew it was the right thing to do to allow her the help she needed to cope in mainstream nursery and I am SO glad we went through with it all, she has had a fantastic time and has come on in leaps and bounds.
We've got the review meeting on Thursday for her amended statement so that she can again get the help and full time support she needs to go into mainstream school. We've been getting the copied reports through from the different professionals and even though I've seen it all in black and white before it still hurts to read it, but on the flip side I know that this is the best thing for dd - and she is blissfully unaware of all the upset!
I didn't mean for this post to be quite so long or self-centred, but what I am trying to say is, as hard as this whole damned horrible process is, it is worth it in the end and it is the right thing to do. HTH

Davros · 26/04/2005 16:32

Hi Pages, sorry to hear you are so down. It all stinks and then we move on
There's quite an ABA gang on MN now but please CAT me if you think it will help and I'm always happy to talk on the phone if you want any advice or info about ABA. The others are a bit newer to it than me so actually might be more useful!
Fio, I was thinking about you today and wondering how you're feeling? When is DD's annual review? Sorry to hijack.

Fio2 · 26/04/2005 16:34

its on tuesday davros i am feeling like shite i have a sinus infection and have spent most the day lazing about (no kids obv) how are you?

Davros · 26/04/2005 16:36

Tuesday next week? Bugger, I thought it was this week and would be over or happening soon.
I can't answer that last question, would take FAR too long.... and be very boring! On balance, OK is the best I can say

Fio2 · 26/04/2005 16:39

LOL

MeerkatsUnite · 26/04/2005 17:44

Pages,

Thinking of you also. We have "spoken" before and know what you mean when you write about the hurt inside.

Haven't had any personal experience of ABA but many of here can help you in this regard. Take them up on their offers of help!. You need support too.

Would be more than happy to offer help with regards to the statementing process as have been there and secured statement for DS. He has developmental delay and a statement has done him a power of good.

You may also want to talk with IPSEA. They are very good also with regards to the statementing process and I can personally recommend them. Their website address is www.ipsea.org.uk.

With best wishes from Meerkats and her DS

maddiemo · 26/04/2005 19:19

It is better to have one than not but it does seem like a huge event and a big aknowledgement of the level of need that a child has.

Sorry you are feeling low. Its that sort of reality biting you on the bum type feeling isn't it. You can bob along quite nicely, knowing your child has needs but coping the best you can. Then something like this happens and you feel like you are being hit in the face with it constantly.

Hope you feel on top of it all soon

JakB · 26/04/2005 19:32

Pages, sorry you're feeling down and don't, for one minute, apologise for telling us about it! The whole statementing thing is really hard, no way round it, but once it's all in place I'm sure things will look more positive. Totally understand avoiding NT parties. God, been that and got all the Tshirts. Some weeks, life is just s* and the emotion is just too raw to pretend otherwise. Thinking of you and hope things look up soon. {{hugs}}

Fio, sorry you're feeling so crap and good luck with the annual review

Vix4boys · 26/04/2005 21:40

Hi Pages, I'm sorry you're feeling so down. I felt the same when DS2 was dx'ed with ASD. Although I knew what it was (lots of it in DH's family) I was absolutely gutted when they confirmed it. Deep down I was hoping they would say there was nothing wrong and I was just a paranoid mum.

We are just starting the statementing process with him now.

At least your DS has had his problems acknowledged and will hopefully get all the help he needs with his statement. I hope it all goes well for you.

Take care.

Original poster

Pages · 27/04/2005 13:50

Thanks so much everyone. You have all really helped. I feel much better today. What Thomcat says is right, nothing has changed and he is still my gorgeous little boy. I think I needed to accept (as does DH) that he has a disability and that's life, and it will be crap sometimes.

Without going too much into what I do for a living and boring you all, I had an occasion today where a child with behavioural problems was being heavily criticised, he had a SEN though no specific dx, so obviously something was wrong, but people were assuming that he was just a nasty little kid because he had done something wrong. (I actually thought he was gorgeous). I stuck up for him and the parents and told everyone they have no idea what life is like for him or his family - after reading all the posts on mumsnet about some of your kids' behaviour problems and other peoples reactions, it had really opened my eyes. And I was really listened to today, and I realised how ignorant I've been in the past, and maybe I can help try and change things in even a small way instead of feeling sorry for myself, as well as helping my dS. I think half the battle for us is the fact that society automatically accepts NT children and ours are the exception, the "different" ones, when they should really be accepted totally as who they are and part of life's rich tapestry, and everyone should be responsible for and provide for them, instead of making them and the parents feel alone and different. Right, I'll get off my soap box and back to the real world now!

Davros, I will CAT you when I get a minute about ABA, and I will be in touch again Meerkats as may need some help with statement. Thanks again for helping me feel less alone, everyone.

OP posts:

heartinthecountry · 27/04/2005 13:57

Glad you are feeling better Pages and well done you for saying your bit.

You are right - life would be so much easier if we were more accepting of difference as a society. I do think that for me, one of the hardest things about dd being disabled is my concern about her future, whether she will be bullied or lonely..., and that has nothing to do with her and everything to do with society. It is pants .

MeerkatsUnite · 27/04/2005 16:30

Pages,

Glad also to read that you are feeling better today and well done you for saying something. It may well have given them food for thought.

Integration into society and acceptance of differences are certainly important issues which certainly need addressing by society as a whole. After all, we all look different from one another and our blood temperature is the same.

One of my friends said to me once with regards to her son who is autistic (there were problems at school re acceptance and integration), "its not the children who are the problem, its the adults".

My best wishes to you and your son.

Meerkats in Essex

JakB · 27/04/2005 16:43

Pages, good for you for speaking out and enlightening people Society does, indeed, have a long way to go... But I feel very lucky to have been given an insight into disability

Davros · 27/04/2005 22:26

Pages, I think you did really well to get something positive out of a bad patch, well done for speaking up. Now you have started you'll have to keep doing it!
HITC's post is also very moving
Although I agree with all the sentiments and views expressed about society being the issue and acceptance being so important, I'm afraid that there is no way my DS is ever going to fit in with a bit of acceptance. I call his behaviour "unusual" which is a polite term for how he is at his best. But he can also be very alarming, if not a bit scary and other people can't help but notice it, its what they do then thta makes a difference and if they are interested in finding out more, being friendly or just nasty and judgemental to all of us, not just him......

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