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Statement has come through, feeling pleased but underlying sadness

96 replies

ThomCat · 09/03/2005 22:36

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

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lars · 11/03/2005 18:57

Thomcat, ((((( a big hug))))))))

Just got my ds statement and know how you feel to read all the details. For a moment i thought why my child??? and then I thought why not me because i'm strong enough to fight for the right support and i've got it - hurray !!!
Thomcat they are listening and understand that our kids do need this support.
I know that half the kids that should have statements haven't through lack of funds.
Take care larsxx

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Pages · 11/03/2005 17:11

Thre isn't much I can say that hasn't been said already (so many wise words), except I know the feeling too. But reading SleepyJess's description of Alex and his banana made me laugh till I cried. Someone told me once that pain and joy are two sides of the same coin - worth remembering, I think. Hugs to you, Thomcat

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mamadadawahwah · 11/03/2005 09:58

Statements are only words. Yes, they incorporate a child's behaviour and are based on observations but at the end of the day, they do not "sum" up a child's potential, not by a long shot.

If we go to the psychiatrist, we are labelled as soon as we walk in, if we are late for the appointment, we are "hostile", if we early, we are "over anxious", if we are on time, we are "compulsive". If and when my child gets statemented, I hope to have the clarity of mind to remember 3 or 4 pieces of paper can never sum up my child.

Remember the guy in the States who woke up after 19 years in a coma??? Kids are capable of fantastic and awe inspiring things and I hope i will take a statement for what it is, i.e. the means to an end. Thats all.

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princesspeahead · 10/03/2005 23:21

isn't that crap that they didn't tell you? god. it is terrible when it goes wrong, isn't it. aurgh.

I demand a formal introduction, written CVs and 2 references now lol! Well I will do if they ever replace the lovely Bernice the Blood Lady!!!

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ThomCat · 10/03/2005 23:19

PPH - I had no idea until after that she was a student. lottie was doing her exorcist impression and I was despoeratly trying to soothe her and D was the one who was pinning her down. i was trying v hard not to cry and be a soothing calm mum. If I'd known what was going on on the other side of Lotties body, ohhhhhh god, there would have been blood alright but not Lotties. I know now and no student will get within an inch of her again let me assure you if that.

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princesspeahead · 10/03/2005 23:14

oh milge
sj GOOD on babyAlex! That, I'm sure, is exactly what the nurse required, booting out of the cubicle!
Mustn't be nasty, they are all great at what they do well, but bloods from babies is rarely it. Mind you there was one lovely SHO who used to be able to do a heel prick on ds while he was sleeping, and not wake him up! Whereas the WITCH who spent TWENTY MINUTES brutally trying to squeeze blood out of his heel with two hands, while he screamed and screamed and screamed the while (bruising his 8 day old leg in the process) will never be forgiven, I'm afraid.

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SleepyJess · 10/03/2005 23:10

((((More hugs)))) then Jaysmum. I think it's more unusual NOT to argue!! But I know it takes a lot out of you when you don't feel as if you have anything left to give. Hate rows.. but seem to cause them quite often unfortunately.

SJ x

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milge · 10/03/2005 23:08

TC, hope you are feeling ok tonight. I've just come across this thread and have had my own blub at SJ's post. I had a paeds appt with dd today, and the consultant said " well, i suppose we'd better start getting her statemented", and hearing him describe dd to the education dept on the phone left me v emotional. Explained to him that we had places for both of the dt's at local private school, and he said " well i can't see her reaching that level of mental capacity, but you never know". Great! or or ??? Not sure how i will handle seeing it written down by all the professionals involved in the process Any type of medical appt. generally sets me off grieving all over again for the little girl i thought i would have, and it takes a day or so for me to thank god i've got the little girl i have. Again, thank you SJ for a fantastic post.

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SleepyJess · 10/03/2005 23:08

PPH completely agree re: students. That period when he wouldn't have Emla was awful.. and we had some horrid experiences! On one memorable occasion he actually BOOTED a nurse right out of a curtained cubicle.. she shot through the gap in the middle into a group of surprised doctors doing rounds!!! He was only a baby (and 14 months) at the time.. don't think they thought the 'poor, cerebral-palsied child' had it in him! PML..

Lot easier these days.. the nurses who are qualified to take blood and so do so constantly seem the best by far. And I know which vein to tell them to use.. and as it's only six monthly now it's always usable. His hands are still scarred from special care though.. bless him!

SJ x

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princesspeahead · 10/03/2005 23:07

sleepy, glad he has found his level at the mo. My ds is on 3days one dose, 4 days another etc which is complicated! He is about every 5 months - just the way the clinics work I think. And if I think he is behaving in a way that is a bit off, I take him in whenever and get him checked. V rare but if he has had a huge growth spurt and is suddenly v bolshy and emotional it is often because his thyrox levels have dropped.

I've given up on Emla because I couldn't see it made any difference, he hated the patches, it aggravated his ezcema etc etc. He now gets a blast of the freezing spray just before they do it - seems to work better. Worth a try maybe? And that fact that is cold seems to interest him slightly just as the needle is going in - distraction!

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JaysMum · 10/03/2005 23:06

No I am not!!!!! Im in such a bloody tizz...and hubby and I have argued tonight WE NEVER ARGUE!!!!!
ARGH I HATE SCHOOLS!!!!!!!!!

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SleepyJess · 10/03/2005 23:04

Think nothing of it JM.. 'cos that's what I did.. ... nothing! Just wish we could help you more. ((((((hugs))))))) You are one clued-up, amazing mummy.

SJ x

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princesspeahead · 10/03/2005 23:04

NEVER accept a student for a child's bloods. They can learn on someone elses child as far as I'm concerned! I was brutal about it after some bad experiences - if the doctor doesn't get it first time then it gets worse after that. I give SHOs and Regs 1 shot at it, then I tell them to go away and find someone else who can get bloods properly. And I have been known to refuse a SHO who botched his one chance 4 months previously! He looked relieved, I think he remembered me.
Life has much improved since my local hosp got the funding for a full time paediatric phlebotomist, she is great, in and out first time, quick and calm... oh joy

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SleepyJess · 10/03/2005 23:01

DS is fine with his blood tests now.. but there were a bit of a problem before because when 'magic cream' (Emla)was applied, he used to bite off the patches, eat them! (I kid you not!) and suck all the cream off..!! He never cries for long though.. if at all.. he seems to have a very high pain threshold actually.. and a short memory of anything nasty, luckily

How often are your DS's PPH? Ours are 6-monthly now his T4 and TSH levels have stabilised so well.

SJ x

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JaysMum · 10/03/2005 22:58

SJ and TC.....thankyou.
JMxxx

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SleepyJess · 10/03/2005 22:58

PPH, DS does have a thyroid.. they 'ultrasounded' it when he was first diagnosed with hypothyroidism when he was in SCBU still. It was there.. it clearly just doesn't function. Has been very stable re Thyroxine dosage in last year.. previous to this he was always needing it re-jigged! (It's still on a tricky 3 day cycle dosage though.. but that's DH's department.. I have a head like a sieve!!)

You lot are bloody mental for performing virtual humble pauses because of that whiney thread I started the night I joined MN. Have not re-read it.. but KNOW it was whiney.. and not like I normally am! If you could see how I am (heaven forbid) you would witness me shieking like a banshee at my poor kids.. snapping DH's head off at nothing.. and generally being a bitch from hell periodically.. !! But think this is how I cope.. not really prone to depression as I vent it all out!!! So really.. not at all.. anything out of the ordinary.. except extraordinarily stroppy at times!

PML re the descriptions of a 'stereotypical SN mum'! Surely Jesus Sandels are more high-maintenance (and therefore inappropriate for us poor poor stressed creatures) than a nice comfy pair of chav-culture trainers..! All those buckles after all.. and exposed toes at risk of getting bitten of by passing SN rug-rat crawling by! ! (Alex loves toes! He is in his element in the summer.. he likes to taste painted toenails!!!!! )

SJ x

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tamum · 10/03/2005 22:57

This has turned into such a lovely thread. TC, you are such a fab mummy, and Lottie is such a lovely wee girl. Don't let the crap grind you down.
xxx

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ThomCat · 10/03/2005 22:53

Well that sounds full on. Lottie has had about 7 in 3 years and thet are so stressful, she gets so upset. Last time they had a student who hit bone. I just find them so traumatic, because Lottie does.

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princesspeahead · 10/03/2005 22:51

what do you mean by fullon? they take a cartridge of blood out of him. It was difficult when he was a baby because it would take them AGES to find veins (tiny veins, baby fat on top... bad combo). And also he needed them about every 6 weeks then. It is better now he is 4.5, because it is only about 3 times a year, but still a little traumatic! But he knows that he gets free run over the vending machine afterwards (completely banned the rest of the time) and the thought of a packet of wotsits usually gets him through it....
I look forward to the day when we can get his bloods done at the gp instead of having to go to the hospital to have the paed phlebotomist, the play-lady and another nurse to hold him still wrestle the blood out of him though

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mizmiz · 10/03/2005 22:43

Thanks TC, but I get it every issue anyway. Just wanted to make sure I hadn't missed it as I would have remembered something like that even if I hadn't known it was you!
I'll pick it up tomorrow.

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ThomCat · 10/03/2005 22:36

Does he have to have proper full on blood tests??? God I hope not.

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pixiefish · 10/03/2005 22:35

Hugs thomcat- you're a super mum and agree with mizmiz that you're a very trendy go- getting positive role model (If I can say that without offending)

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ThomCat · 10/03/2005 22:35

I was babes yes, it was Willows work of art so to speak, the one that has been out a few weeks now, has a delicious B&W close up of a baby's face. Willow did an amazing job. I'll scan & email it to you on Monday if you want, just email me through mumsnet.

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princesspeahead · 10/03/2005 22:33

the little white pill is thyroxine! so it isn't really medication, it is replacement. he just takes orally what he would make himself if he had a thyroid.
needs blood checks every 4-6mths or so to make sure his dosage keeps up with his size, and that is about it.
if you are going to be born without anything, the thyroid is pretty much the nicest and most manageable thing to be born without, it seems to me!!!

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mizmiz · 10/03/2005 22:32

TC, gather that you were in (correct me if I'm wrong) Junior Pregnancy&Baby? Which issue was it?

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