Do you distance yourself?

[Midnight_Fairy]

Neurotypical = NT sorry I just hate saying "normal"

 

[Foogirl]

My 12 year old nephew came up with a great phrase, she's not normal, but she's not abnormal, she is Abby-normal.

 

[Tegans Mama]

I wish I had friends who have kids with SN's of any kind. I don't. Therefore I don't have any friends because I drive myself MAD with comparing, thinking she should be doing that, but she's not, and it makes me so sad.

So, I don't have any friends in RL who have children except my little sister - my niece is 11 months and for some reason I feel totally different about her.

 

[Midnight_Fairy]

I wish I had friends who have kids with SN's of any kind. I don't. Therefore I don't have any friends because I drive myself MAD with comparing, thinking she should be doing that, but she's not, and it makes me so sad.

So, I don't have any friends in RL who have children except my little sister - my niece is 11 months and for some reason I feel totally different about her.

Mines getting worse, I feel like I am isolating myself from anything outside of special need groups and other SN parents. I feel like other people just will never understand.

 

[Midnight_Fairy]

p.s I would love to live closer to you and hayley

 

[Tegans Mama]

xx

 

[Lottie86]

We use the abbreviation NFF - normal for Findlay

Lea: are there no SN groups near you at all? One of the Mums I'm friends with (met her when we were both pregnant as her baby had been diagnosed with mild SB and midwives thought I could talk to her about bowel and muscle issues) said our hospital has an SB clinic every 3 months where the children see all of their consultants in one go rather than going back and forwards to see each one individually and she's met other SB mums in the waiting room. Do you have anything like that at all at your hospital? Wish we lived closer to you as I'm sure F would love Tegan

 

[Midnight_Fairy]

I think you should move here and come to SWANS lol I would be lost without it. I just cant communicate properly with some of the other parents unless they understand. A few do

Its just the braggy parents I cant stand. A tiny thing he does means millions to me x

 

[Tegans Mama]

There is a combined clinic but it's not an SB only clinic. We go once a year and more often than not isn't another child there who has SB.

There are no SN groups here at all, I've spent three years searching lol and found NOTHING. I also find that even with other people who have kids with SB we are quite ostracised - Tegan's SB is a worst case scenario and she seems to frighten parents with very small babies who have SB and get left behind by parents whose children have mild SB because they face completely different issues to us. Wheelchairs that are a necessity and not a choice, pressure sores, standing frames. It's a LONG list, and it's no ones fault, but life with a child who has severe SB is worlds apart from life with a child whose SB is mild. Walking might not be everything but a lack of it sure makes my life harder.

 

[Tegans Mama]

I think you should move here and come to SWANS lol I would be lost without it. I just cant communicate properly with some of the other parents unless they understand. A few do

Its just the braggy parents I cant stand. A tiny thing he does means millions to me x

I know a few of those!

I actually find some parents of children with SN's quite obnoxious if I'm honest... we were at the zoo at the weekend and a family whose son was in a wheelchair just pushed straight through a crowd whilst shouting "excuse me, coming through, disabled child, he wants to see"... I just stood there shocked! At least be polite about it I have noticed a lot of parents expect me to have an attitude towards them because of Tegan's wheelchair but I don't. Yes I ask if I just put her in front of others so she can see but I'd never shout like that woman did!

 

[Lottie86]

Omg I can't believe that woman at the zoo did that!


That's a shame there's nothing near you Why would Tegan frighten people?? Surely they'd just see what I can tell from speaking to you online, she's a gorgeous bright happy girl with a huge personality who just has a lot of extra challenges that other children don't.
When I first met Riley's Mum she was really worried about how life would be when he was born as she'd never met a child with any degree of SB and I told her a bit about Tegan (obv I didn't use her name or anything like that) and how amazing she is in the face of everything she has going on and she said it gave her lots of hope

 

[Midnight_Fairy]

omg at the woman! How rude!

This week has totally drained me if I am honest. I have just become so short tempered with other people, unwanted opinions. I do get a bit defensive but seen hundreds of status about how well the kids are coping with new school. Just wanna scream lol.

 

[Tegans Mama]

Omg I can't believe that woman at the zoo did that!


That's a shame there's nothing near you Why would Tegan frighten people?? Surely they'd just see what I can tell from speaking to you online, she's a gorgeous bright happy girl with a huge personality who just has a lot of extra challenges that other children don't.
When I first met Riley's Mum she was really worried about how life would be when he was born as she'd never met a child with any degree of SB and I told her a bit about Tegan (obv I didn't use her name or anything like that) and how amazing she is in the face of everything she has going on and she said it gave her lots of hope

When you're told your child has SB they always tell you they won't walk, so that becomes the parent of a child with SB's worst nightmare. And Tegan embodies it - she is one of three children with SB who I know out of LOTS who are totally paraplegic. Most have some degree of feeling or moment. Tegan has nothing at all. So she does scare them, that THIS is what it might be like. I love her to bits and I wouldn't change her, her SB is part of who she is. But I'd give anything for a "mild" case. Or moderate.

omg at the woman! How rude!

This week has totally drained me if I am honest. I have just become so short tempered with other people, unwanted opinions. I do get a bit defensive but seen hundreds of status about how well the kids are coping with new school. Just wanna scream lol.

It was really rude! They didn't know Tegan was at the front either, normally when there are two or more kids in wheelchair there's the "Knowing smile", from parents who have been there and know how hard it is to have a disabled child. But this family TOTALLY blanked us.

Lol Yeah I am with you there, I have a few friends like that. X did this, X did that, X can count to ten million and say the alphabet backwards

 

[Foogirl]

Walking might not be everything but a lack of it sure makes my life harder.

This I think is one of the hardest things to get across to people - especially those with toddlers. When I mention Abby's frustrations, and the difficulties we have in the day, I get comments like "oh just take her with you when you go to have a shower" or "let her help with the housework, kids love to help" They don't understand that "taking her with you" means getting her organised to do her walking, supporting her every step of the way and finding somewhere for her to sit and something to keep her occupied whilst you do what you need to do.

The most annoying one is people telling me I shouldn't leave her sitting on the bed or sofa unattended because she might just surprise us and roll or push herself off. Yeah, all of a sudden the hypotonia in her trunk and hypertonia in her legs will disappear and she will magically find the ability to move unaided. Jeez, I've sat on the floor with both of us in tears trying to encourage her to move with no success, and all of a sudden she will do it just because "well, she's very determined....." The one time she launched herself off the sofa, we were beside ourselves with glee. She actually managed some independent movement!!!! She wasn't hurt, she thought it was funny. Of course, it was a one off and she's never done anything like it since.

And if one more person says "one day you'll turn around and she will have got up and walked to see you in the kitchen......"

 

[Tegans Mama]

People just don't understand what it's like unless they've been there themselves. TBH I find even parents whose children have walking ability but get tired easily are totally clueless and flippant about it.

I'm sorry you're going through this Foogirl, it's hard. You know where I am if you need to talk xxx

 

[Foogirl]

Thanks. We manage fine most days but sometimes it can get on top of us. Like you, the bad tempers are a tough side effect and the more heartbreaking because you know the cause. We thought we were getting somewhere then just the other day her physio flippantly said "you know she won't ever walk unaided". This was a body blow because we had always been led to believe she would. Such a setback, and the worse that her main physical is convinced the walking frame is the best solution whereas her other two feel it is wrong for her, plus Abby hates it, but it is the main physio who provides her equipment and stuff so we are stuck with what to do.