Feeling quite isolated..

[alice&bump]

i know its different cos katie will be walking one day, but i kinda undrstand how you feel. i would love to take her to soft play and stuff, but i'm so scared of her being trampled on! and cos she's a big girl, really tall and proper soild, i've been being asked for months if she's walking yet, and having people suggest "helpful" ways of getting her walking! even eating her tea in her walker!! and obv there's no physical signs that you can see so people just assume she should be walking cos of her size!! i'm bracing myself for her having her opp and having to face the "omg why has your baby got plasters on both her legs, what have you done to her?" i hope you can find somewhere to take her hun

 

[Mamafy]

I know it's not the same but when Joe was on the apnea monitor I got tired of explaining what it was, why did he need it, what he's 9 months but he looks newborn

Sometimes I use to hide it in his carseat and there we would be in a crowded dr's waiting room with that deadly silence and in we'd come.......ticking It was as if it was a bomb and then of course he'd go abit 'quiet' and he'd alarm

I felt like saying 'yeah next time it will be a bomb knobs'

 

[Tegans Mama]

Tegan was on an apnea monitor when she was in hospital. Oddly I found it strangely comforting, she was in there 8 weeks and there were 7 other babies on the ward. There was clicking coming from all directions, and when we bought her home I actually missed the clicking, and I was sooo scared she might stop breathing

I'm having a really poo night Might put a thread in GS in a minute

 

[Mamafy]

Joe was on it for about 8/9 months. It was great but you would crap yourself when it went off in the middle of the night

Eventually had to take it off him as he kept biting the wires and it wouldn't work

 

[miel]

Tegans mama how are you doing today ?
xoxo,
miel

 

[Tegans Mama]

I am ok thankyou Miel, I am stuck in bed with a slipped disk at the minute so not much happening here! How about you? xx

 

[miel]

i am ok as well...getting ready to see the neuro doc on the 11th...i am trying to think of questions i should ask...any idea?

 

[petitpas]

Hey Tegan's Mum,
I'm jumping in here from a completely different perspective.
My best friend has SB. She can't walk, but crawls fine and at her Mum's house I used to wheelbarrow her up the stairs all the time (not that she couldn't get up on her own, but together was faster and more fun). As teens we used all the concessions we could get - cinema, concerts, and later the best parking spots. Ok, I'd drive and she'd get so drunk she'd fall out of her wheelchair and I had to smuggle her home without her Mum noticing, but hey

I used to be way more worried than she was that people would fall over her on the dancefloor and other crowded areas. Sure it happened, but she was fine and she certainly pays anyone lipservice who tries to mess with her.
I tell you, she's totally ace! She's beautiful, intelligent, and I'm looking forward to being her bridesmaid very soon! Especially, since she was mine last Summer

You have so much to look forward to with Tegan. Yes, things will be hard (and I don't envy you your slipped discs carrying her around), but I'm sure with her lovely Mummies Tegan will have a great and fun life!

 

[Tegans Mama]

Thankyou!! I know that Tegan will have a brilliant life, we take every step we can to ensure that. I just don't know anyone with children, which means Tegan doesn't have many friends and neither do I now, because my friends are still young and go out a lot etc and I can't go with them.

I just feel a bit low sometimes, I don't know why though

 

[Midnight_Fairy]

Hey Tegan's Mum,
I'm jumping in here from a completely different perspective.
My best friend has SB. She can't walk, but crawls fine and at her Mum's house I used to wheelbarrow her up the stairs all the time (not that she couldn't get up on her own, but together was faster and more fun). As teens we used all the concessions we could get - cinema, concerts, and later the best parking spots. Ok, I'd drive and she'd get so drunk she'd fall out of her wheelchair and I had to smuggle her home without her Mum noticing, but hey

I used to be way more worried than she was that people would fall over her on the dancefloor and other crowded areas. Sure it happened, but she was fine and she certainly pays anyone lipservice who tries to mess with her.
I tell you, she's totally ace! She's beautiful, intelligent, and I'm looking forward to being her bridesmaid very soon! Especially, since she was mine last Summer

You have so much to look forward to with Tegan. Yes, things will be hard (and I don't envy you your slipped discs carrying her around), but I'm sure with her lovely Mummies Tegan will have a great and fun life!

Aw thats lovely. I hope you have fun being bridesmaid x

 

[petitpas]

Hi Tegan's Mum,
Just wanted to send you another hug!
I hope you will find some local Mummy-friends through Tegan. Only the nice, caring type of course!!!!

 

[ella n girls]

aw sending u and tegan hugs xxx

 

[Emmea12uk]

Lea Lea I am sorry we dont get to talk much at the moment OUr softplay area has a bit for under twos which is perfect for Tiggy. Next time you come down I will show you. I used to take tom round the place before he walked and act as his bouncer during quiet times. There are times during term time when the place is empty.

It isnt so long now until she will get her wheelchair? is it??

Have you looked at direct payments for childcare on the direct.gov? Maybe having her go to a nursery one day a week would help you feel better?

 

[Tegans Mama]

Emmmmmmmm I know, I miss talking to you Buttt you will be turning up on my doorstep in about two weeks time I imagine. Fun times

I am going to look into her maybe going to nursery.

She will get her wheelchair when she's around 3. One and a half years to go.

 

[princess_bump]

oh honey, i cannot believe i missed this thread your a great mummy and tegan is a beautiful little lady xxx

 

[Lisalovesbean]

Can't you contact OT and tell them you need a Major Buggy, they have a high up seat and would be great as Tegan would able to interact a bit more when out and about....also she can talk can't she, so that's a plus as she'll have that interaction with people.

I have had an isolation issue and have done so since my eldest child started showing signs of varying problems....he started off with no speech and ADD diagnosis, which then once heavily assessed was found to be Autism of the severest scale, he is totally non verbal....(I will never hear him talk or say Mummy....), is Globally Developmentally delayed, has stomach problems which cause all sorts of eating problems, sleeps badly, uses a wheelchair sometimes, he can walk but has sensory difficulties and no awareness of danger, is still in nappies and will remain so...and is now also being tested for Prader Willi syndrome and underdeveloped reproductive organs....

I've experienced the comments and the stares with my son and I still do....and I imagine we will always have that....but will say that once you get a wheelchair you'll find people tend to see that and not ask...as it becomes apparent there is a disability, so you'll find that makes everyday easier to bear.....this will sound a bit weird, but a physical disability won't be questioned as much as a mental one as it's visual to see, iykwim? Sometimes people unfortunately still just think my boy is wild/feral/naughty/I'm a terrible parent...but sod them...If they don't ask, I don't volunteer any info....plus it's way too complex to go into!!


As a family we still have a lot of difficulties, with Ellis we can never predict what will happen and we do accept invitations out but they are never "normal"...we will go to family parties/occassions and one of us will sit in the car with him whilst the other go inside the party and we take it in turns...sometimes he will be social and other times it's a complete no go....it's just how it is...at least with Tegan she won't do that...she looks very sweet!!!

What I will say is LEARN TO DRIVE....do it for Tegan, it will open up a world to you and give you freedom...and her a chance to go out and have fun. You can contact various place like Family Fund and apply for free driving lessons and once Tegan is three you'll be able to apply for DLA Mobility and I am certain you'd be on the high rate because of Tegan's disability which would enable you to finance a car.


It's hard, I know....but you have a lovely little one there and it will get easier as time goes on and you get the chair and you start to become immune to people's comments/questions... just enjoy her cause she's lovely!

Don't hide yourself away, you need to get out and don't worry about what others think!