Statement has come through, feeling pleased but underlying sadness

[ThomCat]

So, as you may have read, out statement for Lottie has come through. After being told to go away and that she was "developing age appropriate skills" and was too young we have now been 'awarded' 10 hours a week, out of the 15 hours she attends nursery. So all good.

However, can't help but have a moment to myself of sitting here feeling a teeny bit emotional as I read through her description, and if I'm honest, comparing her to the little girl who walked into school today and was chatting to her daddy.

This little girl was carrying one of those play ELC knives, and daddy was saying it was gold to which the little girl responded that it wasn't gold it was brown, it couldn't be gold. It struck me that this girl, Lotties age, knew what the colour gold was, knew that gold was also a precious metal, and could basically have a conversation and argue the point with her dad.

Made me smile and made me sad at the same time.
all colours are 'lelo' (yellow) to Lotbags. I know we'll get there and what does it matter but sometimes the difference in her and her NT peers seems so huge you wonder how you'll ever get there, how the gap will ever be bridged.

It says in the report "Charlotte presents as a confident, chatty little girl, with many engaging mannerisms. She shows curiosity and interest in her surroundings and is assertive about expressing her needs and wants'. Which is lovely. But it's the words delayed, reduced, only able to concentrate for 5 mins, finds it difficult to pronounce, needs help, shows no awareness and so on that just leave me feeling a bit down in the mouth tonight.

A liitle boy in her class came up to me this morning, all excited to see her, and said to me "I heard her talk yesterday". How lovely but at the same time how sad.

Sometimes being the odd one out, the novelty, the cute kid that can't walk or talk ... well it just hurts a bit. Sometimes it would be nice not to feel.... 'special' iykwim.

Sorry, self-indulgent waffle that I'm sure you'll allow me, and understand even, but self indulgent all the same.

Tomorrow will be a better day, I do, after all have a fab kid and we're getting some great support so what is there to moan about really?
The answer is nothing! Just that sometimes, every now and then it feels crap being different, it feels crap that your child needs so much help, it feels crap that she, that we stick out from the crowd, that she's a novelty, that she can't talk, that she can't walk...............

Okay, I'm done.
Thanks for listening, TC x

[chatee]

i know the feelings tc, but my dd has come on so much in the last 12 months and i am thankful that i did and will continue to fight for anything extra that will help her that little bit more.....chin up chuck

[lou33]

I think we can all understand how you feel here TC, xxx

[PuffTheMagicDragon]

Can't think of anything useful to say, but sending a ((((hug))).

[ThomCat]

I know Lou, xxx (kisses to you), and that's why I'm only telling you lot how I feel, no point in telling anyone else, just need to be like this for an hour and then back to normality, which is all good, just gonna let it be all rubbish for a moment, and kn ow this is somewhere i can do just that.

[lou33]

take as long as you need mate

[lekki]

hi tc, lekki here, its good to here someone gets exactly the same feelings as me about being different, and standing out so much, the attention hurts so much sometimes, i feel the stares burning me sometimes. my dd has just started nursery and she cant walk , and it hit me for the first time how different she is, i sobb my heart out sometimes, because i dread the day she really realises she so different from all the others and i never want her to feel sad, thats what hurts. but i must make her a really strong person, thats all i know, ive gone from one extrem to another, my elder child is very bright, clever, very very popular,which the kids and the teachers, and now i faced with pretty much the same as u, it makes me want to protect her even more when i see how different she is,iget so tierd though and feel like theres no fight left but if i dont help her noone will, see ur not alone, keep battling on,like the rest of us

[Blu]

Listening, TC. Listening.
You can be sad about all those things, we know, and she knows, that it is nothing to do with how much you love her. But doesn't mean you shouldn't be sad, or have wishes.
Just let yourself feel it.
XXXXXXX

[Blu]

Hi lekki

[anorak]

TC, your daughter is gorgeous and delicious, everyone who meets her wants to eat her up, she is loving and sweet and huggable...she beats other kids hands down at being super-scrummy!

Old cliche I know - it's nice to be important but it's more important to be nice

[JaysMum]

I know!.....why does it hurts so bloody much?????
Sending you a massive hugxxxxxxxxxxxxx

[mizmiz]

Thomcat, I wouldn't for a minute want to deny your feelings, but maybe a few points may make you see the silver lining (you are so good at that!)
As someone who participates in statementing, although as you say, seeing someone's needs so starkly set out can be demoralising, it does mean that people can start getting on with the serious business of addressing those needs.

Thus, if there's an issue with attention, that becomes a goal to work on, likewise issues of for example, pronouns, social skills, dressing independently.
When I write out a statement review, it is tremendous fun to put a tick into the 'Goal achieved' box and because it has been fought for, that goal becomes all the more precious.

A statement means that a child is being taken seriously, not patted and patronised and told that they are cute. Rather, that they are an individual bursting with potential and that it is our job to coax this potential out with respect and thought and care.

Consider also the lesson that Lottie is teaching the children in her class. When you were a child, no doubt people with SN made people feel uneasy and unsure. This is so different these days!!! Just NOT an issue, apart from that of teaching other children lessons about tolerance, support and respect.
Once worked in a summer camp and in my cabin, one of the children had DS. They were all about 12.
We decided not to mention it at all, just see how it went. One day one of the other girls was complaining about the one with DS. Heart in mouth, I asked what the problem was,thinking she would mention something about us having to do things a little slower for example. She proceeded to tell me that she was annoyed about her throwing her knickers onto the floor.
Her needs were not an issue for the whole 3 weeks and we all had a great time.

I recently helped a research student who was doing a study on articulation difficulties in people with Down's. One yoiung woman had to be discounted because there wasn't an articulation problem to speak of, but the three of us had fun as she regaled us (with lots of eye rolling and sighs) with stories of her parents' silly fights. She said she desperately wanted to leave home (already had a job) but didn't dare leave them alone!!! LOL!!

Lottie will be FINE. You won't believe how much she will come on, and how, like all people with SN she will continue to come on, long after you assume that she has plateaued.

[ThomCat]

Girls, girls, girls. Thank you, thank you, thank you.
Mu bessie mate rang just now and knew something was up but couldn't share it with her, only you lot would do tonight. Thanks.

Blu and Lou and anorak, my old muckers, always there, thanks, thanks for knowing.

Likki, not name i have co me across often but one I look forward to seeing a lot more of. You said it kid. Thanks for your post, thanks for sharing and letting me see you know.

Okay, I'm off, going for a kiss goodnight with my delicious little girl and by tomorrow I'll have forgotten I ever felt this way, for a good while at least anyway.
Thanks for your posts tonight, it was good to have responses to my ....'blip' and to feel you there, really, as ever, thanks.

TC x x x x x x x - one for each of you on this thread.

[ThomCat]

mizmiz, I posted while you were posting and you need a really big X. Thank you. What an uplifting post. How lovley that you took the time to share it. am going to bed now with big fat tears, but happy ones. Thanks for understanding but also for bringing that cloud and it's lining back into view. A truly lovley post and I'm so grateful.
Fuck it - being special is fab, I should be feeling sorry for everyone else, not myself .

God how I love mumsnet sometimes.

[ThomCat]

Sorry I spelt your name wrong Lekki.
Hi Socci, bless you,xx

[SleepyJess]

TC.. that section.. "Charlotte presents as a confident, chatty little girl, with many engaging mannerisms. She shows curiosity and interest in her surroundings and is assertive about expressing her needs and wants'.. I just need to tell you that your DD sounds adorable.. she sounds like a little bundle of love, just like my DS, Alex, although I'm sure she is completely different.. but the essense of her sounds the same as my precious little boy.

I feel everything you describe, regularly,.. sometimes its such a weird mixture of feelings that I can't put it into words.. I too have had children and staff say to me 'he said such a thing today and we all understood!' type stuff.. and I feel pride, sadness, joy, all at the same time and it's often hard to keep the emotion off my face and respond appropriately. Alex can't walk either. He is in mainstream and at a wonderfully inclusive school with many PD children among its pupils.. but is still one of the most disabled they have. The word special has become a double edged sword, because it describes DS in so many ways.. he is certainly the special one in his class.. there is no other in his class that can't walk, says so little, can't use a pencil at all, wears a protective helmet, dribbles, drags the daffodils out of the vase on the teacher's desk eats them, climbs into the packed lunch box trolley opens boxes and eats whatever he can get hold of, needs 24 hr one to one attention, can only 'behave' for small segments of assembly, has to be 'fed' most of his lunch, uses a wheelchair...

...But then on the other hand.. there is no other child I have ever come across, yet, (but perhaps your Lottie is one!).. who loves so unconditionally, who spontaneously shakes hands and greets complete strangers leaving the vast majority smiling openly, who gives me the biggest boost in the world when he said 'uv oo too' when I say 'I love you!' (maybe he hasn't grasped the full meaning.. but I don't care!).. who makes us laugh about 50 times a day, who can stop my other two arguing and stun them into silence for a second when they see him master some new (very basic!) skill... who loves his puppet as if it was a family member, who gets so excited that he throws his arms and legs around and emits high pitches squeals at the sight of a banana, who stands at his gate in the morning (and often at night!) and shouts 'mornin'! morning'! Brfast!' in a happy, joyful voice.. the list is endless... He is really is very very special.. and in a good way.. not in the way his very long ten page statement says he is! Ok he's that too.. but that's just paperwork.. and so is Lottie's.. its a means to an end for getting them the provision they need and not something we need to dwell on except to correct and update it at reviews. The statement does not capture the essense of our children.. only we, who are honoured enough to share our lives with them get to appreciate and experience that!

When DS left his (mainstream) pre school last summer, the supervisor (a man, not given to flowery statements!) wrote on his transfer notes for school.. 'Alex has made much progress and has been a joy to work with but I can't help feeling he has given us far more than we have ever given him and will be sorely missed!' When I read this (in front of the supervisor) he assured me that he meant every word. That's why I remember every word and treasure them for the bad days when I get bogged down by the unfairness of it all and 'what might have been'.

I know it would be nice not to be the parents of 'the special child'..I so know what you mean.. I think we all do on here.. but I think it also means that we are special too.. and in a good way.

SJ x

[mizmiz]

So glad it helped a little
XXXXX

[soapbox]

SleepyJess - that was a very moving post

[mizmiz]

I second that soapbox.
Quite quite wonderful.

[ThomCat]

Sleepyjess - i'm so glad I started this, first off it was lovley to feel the support from my mumsnet friends, then it was mizmiz, and now your post. I have to sy, that'sone of the most I've cried at a post, but in a good/emotional way.

Your strength, your love your gorgeous son,your hurt, all of the emotions that mothers of chikdren with SN came through so strongly just then. I wuite honestly don't know what to say to you right now.
I think I may to email you off boardws. I just need to say that I am so happy you posted tonight. I mean it fromt he bottom of my heart when I say that, and that your son, your family an dyou sounf totally amazing and I'm so pleased that this thread relly made me get to know you better tonight.
I'm going to leave this post now but you won't be leaving my thoughts for quite some time.
TCx

[ThomCat]

(appaling typing from me again, sorry, just rushing out how I felt after such a lovely, touching post from you SJ)

[SleepyJess]

Thanks Glad it helped. Feel free to email any time.

SJ xx

[ThomCat]

I was gagging for you to post again, can go to bed now. Will email you tomorrow.
Thanks, so much, TC x

[Cristina7]

Oh, TC, I understand so well your feelings on this. My son is 5, profoundly deaf, wears hearing aids and does very well with them. But it still takes me by surprise sometimes that he doesn't know some very common word and that it still hurts that he doesn't. He's absolutely great, has good speech, top of the class at reading, fab social skills etc etc, it is all getting so much easier. But it still hurts when something very trivial pops up which he doesn't know. I try not to compare with other children but it seems so unfair that some things will be an achievement for him to master when they are just easy and natural for others. Sorry, this won't be lifting your spirits...I guess I needed to say it too. Cristina

[throckenholt]

glad she is going to start getting the help she needs .

Can I ask what NT means - sorry but it has puzzled me for ages and I can't work it out - probably obvious to everyone else.