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SN children

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

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Original poster

Feel a bit sad today

53 replies

ThomCat · 14/07/2003 10:25

It's no huge thing, just feel really blue about stuff today. Saw physio on Friday and they want to fit Lottie into some metal contraption to make her stand up. Don't know yet how long each day etc. She suggested it, asked me to think about it and I said no let's just do it. Going again Thursday so may be taking it home then and will know more about what it involves. Just feel sad that she has to be forced into this thing and bolted in. It's no biggie I know but can't help but feel blue. Didn't help I suppose when on Saturday night there were 3 kids there younger than Lottie and they were all mobile and talking. I know I should shape up and it's all for the best blah-de-blah but just for today I feel low / blue / teary etc.
Sorry to come on here being all miserable!

OP posts:

Girly · 14/07/2003 10:32

Its ok to feel sad Thomcat, your feelings are just as important and you need to allow yourself that. I have been reading the special needs threads since watching the channel 4 documentary and stand in awe at the strength of you all.

So allow yourself to feel sad for you and your dd, you need some tlc too.

whymummy · 14/07/2003 10:33

hi thomcat,you dont have to say sorry youre in the right place to get sympathy and advice,i wish i could say something to cheer you up and im sorry you and lottie are going through this but try and stay possitive, lottie doesnt want to see you sad,lots of hugs {{{{{{}}}}}

doormat · 14/07/2003 10:37

Hi Thomcat, if it is any consolation this metal standing frame will really help your daughter.My ds didnt even like his feet touching anything. The physios and Ot's in his school have MADE him stand up in his frame and thank god they have. He is now beginning to stand up against furniture (you have to put him there but hey what an improvement I thought it would never be possible)
The next step should be the walking frame and my ds scoots around the school in his.He takes a couple of steps if you support him.They now think he will one day walk.Considering we were told he would never do anything, he is getting there and your daughter will hopefully get there like my ds has.
I know it is hard though, I must admit Xmas is the killer for me,I get very depressed at that time.

doormat · 14/07/2003 10:40

ps thomcat I must admit when I seen this metal standing frame I cried, it looks so medieval doesnt it. I also cried when he got his wheelchair, but hey keep ya chin up.LOL to you and hugs

lou33 · 14/07/2003 10:42

TC I have just mailed you so look out for it. Ds has a frame, I can send you pictures of him in it if it helps, looking very proud of himself!

Original poster

ThomCat · 14/07/2003 11:03

Well you've all made me cry now!!!! Ha haaa, only a couple of tears rolled out but feel much better for knowing that you girls understand. One of my best mates was so 'oh well, it doesn't matter' kind of thing. I just need to hear what you've all said which is 'no it's shit and it's upsetting and heartbreaking but hey you get results so chin up and be strong.' Thank you so much, it means so much to a soppy ole emotional cow like me I can't tell you. Still feel shit but so nice to know you guys are around.

OP posts:

GRMUM · 14/07/2003 13:10

Thomcat glad you're feeling somewhat more condusive to the idea of the frame now.It will surely help Lottie an awful lot.First of all the weight bearing will be extremely good for her (stimulates bone growth,strenghthen her back and therefore gradually be able to maintain an upright position on her own).She will be able to do things painting,plasticine,toys,puzzles,cooking (with or without help) whilst in the frame which will help her co-ordination and dexterity skills.And best of all perhaps she will see the world from another perspective.Love to you both and good luck.

Original poster

ThomCat · 14/07/2003 13:22

Thanks GRMUM, I'm sure that frame will become a friend to us sooner rather than later. I'm just not welcoming the idea too much initially but know that I'll be grateful for it soon. just wish she would use her legs and put her feet on the floor without the aid of some archaic contraction, but she won't and at least there's something to help her to do so. i'll let you all know how she gets on with it anyway. xx

OP posts:

dot1 · 14/07/2003 15:25

Hi Thomcat - just wanted to say hello and hope you're OK. My ds hasn't got any special needs, but you're such an inspiration on threads - I love reading your contributions! So, hope everything's looking less sad and good luck with your daughter and the frame.

doormat · 14/07/2003 15:26

Do you feel any better now Thomcat

tamum · 14/07/2003 15:34

Thomcat, I just wanted to send you a hug. I can completely see how it must feel, however much good you know it's going to do. She will be walking before too long, won't she? Try not to worry about what other children are up to, so long as she's happy that's the main thing. She sounds like such a sweetie-pie, I really hope it helps and she doesn't mind it. {{{{}}}}

Original poster

ThomCat · 14/07/2003 17:17

Wow! I am always completley bowled over by the warmth and support from other Mums on this website. Honestly it just blows me away. Thank you SO much, all of you. It's just a little thing that's happening really and yet you've all been so kind and so lovely! To be honest yes I do feel better and hand on heart it's 100% down to all of you, it really is. How can I feel sad when you're being so nice to me?! Really, can I just say a huge thanks to everyone who's posted on this thread today and now I'll stop with the emotional waffle as I'm probably just making you all puke!

Have decided that I'm going to make the frame my friend!! I'll ask if I can decorate it and I'm going to see this as a positive thing. How fab that here is this fabulous invention designed to help my wonderful daughter in standing up and eventually walking. It'll just be like having a baby walker, only it doesn't move and the therapists don't mind you putting her in it! I shall go out and buy her a table the right height for her to stand at and enjoy her enjoying life from a new perspective.
Yes this is great, I've almost convinced myself.

OP posts:

SamboM · 14/07/2003 17:21

Good on you Thomcat! And good luck to your dd with her cage.

SamboM · 14/07/2003 17:21

Sorry I meant Frame!!!!

Original poster

ThomCat · 14/07/2003 17:25

Ha haa, now if she were being put in a cage I'd really have something to cry about!

OP posts:

GRMUM · 14/07/2003 17:27

Decorating it is a fab idea thomcat as is getting a table.Wait for the table until you get the frame so you can get the right height IYSWIM
Even if dd doesn't like it at first,stick with it as she will with your love and help come to appreciate what a new world being upright opens up.

tamum · 14/07/2003 17:28

Thomcat, you're a real inspiration. What a fantastic attitude. I hope she really loves seeing the world from up there!
xxx

tamum · 14/07/2003 17:32

How about one of these ?

Original poster

ThomCat · 14/07/2003 17:34

Thanks again - when the frame is in place and the table has been bought and Lottie has learnt to love it i'll send you all a picture of her smiling when she's in it and we can all know how right we were. I'll keep you posted in general and let you know how we get on before the full on grinning occurs!
I'm also printing this thread off and showing it to DP and hope that your words have the same effect on him as they have on me. XX

OP posts:

tamum · 14/07/2003 17:35

Well then here's a hug for Mr Thomcat too {{{}}}!

Jimjams · 14/07/2003 18:04

ohh hugs thomcat. I do know how you feel- every time I see that bloody cbeebies advert "about now your child will say his first words, now he can say anything he wants" I want to throw the bloody TV out of the window!

Other kids the same age are always hard- and younger even worse

great idea about the table and the decorating. We don't hav much in the way of special equipment for ds1- but his PECS book is "his" iykwim, and it looks so fun that all the children want one

lou33 · 14/07/2003 18:41

Thomcat, we found it hard to get a table to fit the frame, because the base sticks out a lot, so ds couldn't get close enough to it. This is where a fantastic service called REMAP steps in. Ask you pt about it. They are all qualified engineers, mostly retired, who will design any piece of special equipment either free of charge or a nominal amount for materials. They use recycled stuff so if you had to pay it should be very cheap. You probably won't pay anything as the pt will probably reuse it when Lottie outgrows it. We got ours made and it's got extendable legs so can grow as ds does.

doormat · 14/07/2003 19:10

Thomcat I know where you are coming from re decoration. When ds got his wheelchair I went straight to Halfords and bought him a personalized number plate, it looks cool.

princesspeahead · 14/07/2003 19:21

thomcat, best of luck with the frame and with it helping lottie as much as everyone here says it will. I also think you are great for being brave enough to come on here and say that you are blue about it - and it is lovely to see so much support from people who have been in your position.

I think you should paint the frame pink and varnish it with glitter varnish - what little girl could fail to love it then?!!

best of luck!

chatee · 14/07/2003 19:44

thomcat,
just over a year ago(May) my dd was 21 months and would not put her feet to the floor.My dd was given a standing frame(a penguin) and yes it was hard at first putting her in and strapping her in but wow what a difference it made to her.
I could put her in the frame outside and she was the same level as her friends and could "play" with them-6 months later she could even manage to undo the straps herself
Like Lou33 we got a specially adapted table so make sure you ask your physio-failing that my Dad actually made the table for my dd so give me the measurements and i'm sure he can make you one(we have a spare and the tray that dd now does not use plus my dd would be only to glad to help)Our physio said it was better than some of the things she has seen!
keep your chin up chuck and buy some bubbles it's a great game for all the kids(we bought one of the cheap battery machines so dd could just press the button and make bubbles appear for her friends

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