# Feeling quite isolated..



## Tegans Mama

I know not many people will reply to this thread, but I feel really isolated just lately :cry:

Tegan can't walk and she never will - she can't crawl properly (she army crawls) and I am tired of her getting stared at because she is a little bit different. We can't take her places where there are a lot of young kids (like baby/toddler group) because we are forever watching for other kids standing on her :cry: I am just so tired of the fact that I feel like I can't take my baby to be around other kids for fear of her getting hurt. 

And there is absolutely nothing I can do to change it, because I can hardly pin her in one place whilst we are out just because other kids don't know not to stand on her, and push her over. 

Pointless really, just had to get it out.


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## Nikkinoonoo

I'm so sorry you have been feeling isolated. I know Jessica's problems are much different to Tegans, but I have been there (before we got her prosthetic). I get times when it all get's on top of me, when she tries so hard to do something but falls because she hasn't got her leg on etc. I spose I don't really have any advice, just wanted to let you know you wasn't alone and to throw some :hugs: in your direction
:flower: xXx


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## Tegans Mama

:hugs: Thanks hun, it just feels like there is no one to talk to because no one understands :( Can't even take her to soft play areas because of the same problem :( The only place I feel safe to let her do her own thing and know that she won't get stood on or knocked over (by either another kid or an adult, yes that has happened :grr:) is at home or at CLOSE families houses (either OH's Mum, my Mum or my sister)... Tis doing my head in a bit :(


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## Nikkinoonoo

We've taken Jessie to a soft play thingy called snakes and ladders. We went midweek and it was fairly quiet. Theres an area for 2's and under which is where Jess went (obv) and I followed her about and sat in the ball pit with her, held her on the little slide and slid her down, put her on the swinging aeroplanes and stuff. Maybe it would be worth checking a few out and seeing if there is a way you can 'play' with her like that? They also did concessions for disabled children so her admission was half price. 
I don't know very much about SB so sorry if I have suggested things unsuitable :hugs:
xXx


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## Tegans Mama

That sounds quite good hun, thankyou for the suggestions, I think I might try it next week. OH wouldn't be up for it probably (bah humbug! :rofl:) but my sister would come with me. I just always feel like the odd one out, and it gets to me that every time I meet a new person they have to ask 'whats wrong with your baby' etc etc.. I have no issue with telling them but it gets repetitive after a while! 

Because of her SB Tegan has no control from her waist down. She can sit by herself which is a godsend, because she shouldn't be able to medically speaking. Its just hard sometimes :(


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## Nikkinoonoo

I hope you find somewhere suitable, shame you're not from London or I could meet you at Snakes and Ladders with Jess. Even when we put Jess in the highchair for a break of Milk and Quavers (lol) she loved seeing all the kids running about from area to area. She sits there waving at them bless her. 
I really hope you find somewhere suitable, sounds like it would do you both good to get out there for an hour or so xXx


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## Tegans Mama

I wish I was closer to a lot of people I know through here and Facebook hun, it would be great because I have some really great friends online, but is just not the same as friends IRL is it? :( Online friends you can visit etc, but they aren't there when you wanna go somewhere randomly :( 

I know where we will go, theres a place near us called Easy Tigers, I was meant to go before but since I don't drive its a bit out of the way! I'm gonna ask my Mum to take us :rofl:


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## Nikkinoonoo

Good luck with it, let me know how it goes :) 
Might be worth waiting for the schools to start again too :) xXx


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## Vickie

just sending you lots of :hugs: :hugs:


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## velvetina

Wanted to send you a hug hun. :hugs: 

I remember the early days with my son (he is autistic) so well, the strain of going to public places and seeing other nt children trying to engage or adults watching him because he acted differently or was so stressed because it was too busy and we would have to leave. It did get better and easier with time, but there are overwhelming moments when you just have enough and it's ok to voice it. :hugs:

I think Nikkinoonoo had some good advice about going at quiet times and do ask about concessions. We only paid a £1 entry (instead of about £6), it all helps. You may also like to ask your health visitor if there are any groups that meet in your area so you can find friends who are going through the same thing. I have met some long standing friends through the speech and language nursery my son attended, it really helps having someone who is in a similar position to you and understands totally how you are feeling.

Take care lovely. x x


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## oldermummy

Hi, it is difficult if your child has difficulties getting them out and amongst their peers, my son is being assessed for autistic spectrum and I was referred to a place called the toy library, i believe they have them dotted around the country, they are like a play group for pre school children with all types of special needs. They only have about 3 children per session and have a nursery nurse for each child. I am sure there should be something similar in your area, get in touch with your health visitor and see what she can suggest1 Good luck:)


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## Mumof42009

I wanted to send you :hugs: Tegan is gorgeous i wouldn't care what other people think sod them every child is unique and different in one way or other it would be a boring world if we were all the same! xx


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## Midnight_Fairy

do you have any sure start centres near you hun?


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## littlekitten8

Hey hun just wanted to give you massive hugs. We have a place around here (can't remember the name off the top of my head) which is a soft play place just for kids with special needs. I went to the one back at home as part of my nurse training and it was brilliant. Even had its own outdoor play area for the older kids. I will look for it when James is fed and asleep and let you know what its called.


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## Tegans Mama

EmzyMathRuby said:


> do you have any sure start centres near you hun?

We do, and we've tried them. People seem to think its ok to let their children stand all over Tegan. It makes me so mad. Because she's disabled she's seen as less important.


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## Midnight_Fairy

Oh thats a shame.

I kind of know how you feel but in a different way. My child was always the one that the other parents disliked! While the other children played nicely my son wouldnt interact and would bite or hit when frustrated. He was the only one out of the august babys thatw asnt talking etc I knew there was more to it then naughtyness but whilst diagnosis was going on I was made to feel like an outsider. I just gave up going in the end. 

Its such a shame that people are so judgemental.

I ended up not taking him anywhere to be honest as he used to be a total pain and it was far easier just me and him.

He is at school now and it makes it alot easier. I do look back and feel like I was pushed out of all the parenting groups though :(


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## Pyrrhic

I am so sorry you're finding things lonely in RL :hugs: You are such a wonderful person, you really don't deserve to feel this way.

Is there a special needs parenting group in your local area? If so, it might be an idea to join. I'm such a place like a soft play area would be happy to set aside an area on a quiet day of the week.

If there's not a group, have you thought about making one? There are probably quite a few Mummies feeling the same way as you :hugs:


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## Mamafy

I have nothing to add hun, it's awful how some people have so little regard :(

Tegan is absolutely beautiful, here for you :hugs:


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## Tegans Mama

rafwife said:


> I am so sorry you're finding things lonely in RL :hugs: You are such a wonderful person, you really don't deserve to feel this way.
> 
> Is there a special needs parenting group in your local area? If so, it might be an idea to join. I'm such a place like a soft play area would be happy to set aside an area on a quiet day of the week.
> 
> If there's not a group, have you thought about making one? There are probably quite a few Mummies feeling the same way as you :hugs:

Thankyou hun :hugs: It just feels kinda like hitting your head against a brick wall, Our town is a big town but we live very close (but not close enough for frequent trips :dohh: Unless we've got a hospital appointment for Tegan) to a big city, which is where all the groups are held. Since neither of us drive, although I am learning this year thankfully, its hard to get anywhere. 

Thanks Mamafy, its nice to know I have somewhere to go when I feel a bit crappy :lol: :hugs:


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## helen1234

have you go a sure start centre near you, they have sensory rooms etc, i bet she'd love that ours has soft play room in there too. 

https://childrenscentresfinder.dire...hire+Northamptonshire+Nottinghamshire+Rutland

here's the list of east midland ones :hugs:


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## alice&bump

:hugs: 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 :hugs:


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## 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 :hissy:

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 :rofl: It was as if it was a bomb and then of course he'd go abit 'quiet' and he'd alarm :lol:

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


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## Tegans Mama

:rofl: 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


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## 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 :lol:


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## miel

Tegans mama how are you doing today ?:)
xoxo,
miel


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## 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? :hugs: xx


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## 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?


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## 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 :blush: 

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 :happydance:

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! :thumbup:


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## 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 :lol:


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## Midnight_Fairy

petitpas said:


> 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 :blush:
> 
> 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 :happydance:
> 
> 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! :thumbup:

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


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## petitpas

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


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## ella n girls

aw sending u and tegan hugs xxx


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## 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?


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## Tegans Mama

Emmmmmmmm :) I know, I miss talking to you :( :lol: 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.


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## princess_bump

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


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## 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....:cry:), 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!:hugs:

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


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