# Do you distance yourself?



## Midnight_Fairy

I have realized every single activity or day out we have done this holiday has revolved around special needs events.

A few mums I spoke to at support group say the same? I Guess it just makes life easier but I seem to be closer to the parents who do know what I am going through?

For example, we have only gone to the disabled swim times etc.


----------



## JaniceT

My SIL is very much the same although she has 2 other boys who don't have autism. It's filled with special needs playgroups, classes, etc. It's good in a way as it gives her support as much as it does to her daughter. However, she also needs time for non-special needs activities to balance things out.


----------



## Midnight_Fairy

I dont do anything for non special needs really unless its stuff as a family but any "event" is always an organised SN one. Someone asked if it was unfair for my daughter but thats not true, she is growing up having an open mind. I would hate someone to be awkward or judging of disibilitys and she is not :)
Plenty of siblings attend too :)

I feel very lucky where I live.


----------



## JASMAK

I have only done one thing, but they don't have much here to offer.


----------



## mom22boys

Where I live there are no special needs activity groups ect. The one that I would go to if I could is a 2 hour drive. We do more activities with my older son and my son with Down Syndrome just usually tags along! I wish I had more activities that I could take my son too. We as a family do things that he can do and if its something that stresses him out we just dont do it! Like movies! We dont go cause it scares him!


----------



## Midnight_Fairy

I only ever go to the SN viewings at the cinema! I hate "normal" cinema.

If we do days out we go with SN groups etc. I didnt realise how little we do with "normal" families until I thought about it?

Plus the SN things are normally cheaper...£2 cinema etc.

I just cant cope for too long in places such as play areas (no go zone) where people just do not understand.

When we do disibilty swim its so much nicer, no one stares and we all help each other. My friend helped me with my DD when my DS kicked off and I helped her by watching her son in his wheelchair while she got ready. Just the smallest things that some people just wont understand....


----------



## JASMAK

I wish we had those things here...it is a smallish city where I live though...probably in the bigger cities they do. Sounds nice...the SN swim sounds good.


----------



## Tegans Mama

Yes, definitely. I distance my self enourmously from people whose children are not "different" because Tegan is TOO different to them. I just can't do it. 

And lately I'm finding that no one understands how hard this is. Tegan has behavioural and physical and health difficulties, all rolled into one beautiful package. MOST of the time she is fine - well behaved, not ill, in her wheelchair. 

Sometimes she's not. Endless hours of screaming, physical violence, won't go in her wheelchair, we have to CARRY her if she's not in her chair and she's getting heavy. People think she's just physically disabled - she's just paraplegic, we just have to carry her everywhere, so what??? :rolleyes:

Sorry! Rant there :lol:


----------



## JaniceT

Unfortunately, a lot of people will not understand special needs children. And when SNchildren behave differently, strangers tend to blame the parents for 'not knowing how to discipline or bring up' their children. It's a cruel world especially for those who care for the LOs.


----------



## Lottie86

I do. I go out of my way to avoid the child a few doors up from us who's exactly the same age as F, I just can't cope with the fact that she runs around, chatters away etc when we don't know if F will ever be able to do that and I am also avoiding my friend who had a baby 2 wks after I had Iona as again I can't currently deal with seeing what I should have. Parents of 'typical' children can never truly understand how much it hurts us to see their child doing what they should be doing and think 'my child should be doing that too'

Findlay and I go to a special needs parent/carer and toddler group on a Thursday (not been for ages due to Iona) and it's sooo nice to speak to other people who understand and who act exactly the same to F and myself no matter what he is doing. It's also fab being able to talk KAFOs, physio, equipment etc with other parents IRL without them looking at you like you've got 2 heads.
Findlay is usually the happiest giggliest boy you'll ever meet but as he is unable to talk when he gets frustrated that he can't tell you what he wants/needs, if something sensory freaks him out or if he is in pain he will scream and/or bang his head and the looks you get from most people is awful. It's the same if he is sitting in his chair retching and gagging (he has major gastro problems) and you get people going 'awwww poor boy' and giving me disapproving looks that I'm not panicking about it and am just carrying on pushing him along as they prob think I just don't care when actually it's just that there is nothing I can do to help him other than aspirate his stomach and that doesn't always help plus people then stare at his tube and pump.

Tegan's Mama: I sooooo wish you lived nearby!! :hugs:


----------



## Lottie86

Tegans Mama said:


> we just have to carry her everywhere, so what??? :rolleyes:

Do you ever get the 'well I had to carry my child around at that age as they used to get tired or didn't want to walk anymore and they were bigger than your child' from people? I just want to turn around when people say that and point out that they don't have to lift and carry their child _endless_ times a day for years as their child is capable of walking and so it's not the same #^%*+$ thing at all!! ::growlmad::growlmad:

Ok that's my rant over, sorry! :blush:


----------



## Tegans Mama

Lottie86 said:


> Tegans Mama said:
> 
> 
> we just have to carry her everywhere, so what??? :rolleyes:
> 
> Do you ever get the 'well I had to carry my child around at that age as they used to get tired or didn't want to walk anymore and they were bigger than your child' from people? I just want to turn around when people say that and point out that they don't have to lift and carry their child _endless_ times a day for years as their child is capable of walking and so it's not the same #^%*+$ thing at all!! ::growlmad::growlmad:
> 
> Ok that's my rant over, sorry! :blush:Click to expand...

Only ALL THE F!CKING TIME! :lol: It makes me want to SCREAM. It bugs the living daylights out of me actually.. Even children who ARE physically disabled but CAN walk and their parents compare them to Tegan or any other child who cannot walk at all. It doesn't compare at all. Yeah they get tired easier than the average child but you won't be carrying them for every step of their lives. Just the physical carrying is hard on a person. 

I wish you lived closer too hun. Sometimes I could use a friend who really understands :hugs: :hugs: xxxx


----------



## Midnight_Fairy

Tegans Mama said:


> Lottie86 said:
> 
> 
> 
> 
> 
> Tegans Mama said:
> 
> 
> we just have to carry her everywhere, so what??? :rolleyes:
> 
> Do you ever get the 'well I had to carry my child around at that age as they used to get tired or didn't want to walk anymore and they were bigger than your child' from people? I just want to turn around when people say that and point out that they don't have to lift and carry their child _endless_ times a day for years as their child is capable of walking and so it's not the same #^%*+$ thing at all!! ::growlmad::growlmad:
> 
> Ok that's my rant over, sorry! :blush:Click to expand...
> 
> Only ALL THE F!CKING TIME! :lol: It makes me want to SCREAM. It bugs the living daylights out of me actually.. Even children who ARE physically disabled but CAN walk and their parents compare them to Tegan or any other child who cannot walk at all. It doesn't compare at all. Yeah they get tired easier than the average child but you won't be carrying them for every step of their lives. Just the physical carrying is hard on a person.
> 
> I wish you lived closer too hun. Sometimes I could use a friend who really understands :hugs: :hugs: xxxxClick to expand...

There is a big difference between a physical problem with walking and a mental problem. Its a shame people do not see that :(


----------



## DanielleM

Tegans Mama said:


> Lottie86 said:
> 
> 
> 
> 
> 
> Tegans Mama said:
> 
> 
> we just have to carry her everywhere, so what??? :rolleyes:
> 
> Do you ever get the 'well I had to carry my child around at that age as they used to get tired or didn't want to walk anymore and they were bigger than your child' from people? I just want to turn around when people say that and point out that they don't have to lift and carry their child _endless_ times a day for years as their child is capable of walking and so it's not the same #^%*+$ thing at all!! ::growlmad::growlmad:
> 
> Ok that's my rant over, sorry! :blush:Click to expand...
> 
> Only ALL THE F!CKING TIME! :lol: It makes me want to SCREAM. It bugs the living daylights out of me actually.. Even children who ARE physically disabled but CAN walk and their parents compare them to Tegan or any other child who cannot walk at all. It doesn't compare at all. Yeah they get tired easier than the average child but you won't be carrying them for every step of their lives. Just the physical carrying is hard on a person.
> 
> I wish you lived closer too hun. Sometimes I could use a friend who really understands :hugs: :hugs: xxxxClick to expand...

God I used to get this all the time, something they can't really say now that Evan is 7 nobody carries their 7 yr old around (and he is bloody heavy lol). I remember a time when I parked in disabled space and this woman pulled up and kicked off about me parking there as she needed the space. When I told her my son was disabled and I actually had every right to park there, she totally went off on one saying that I could just push him and she needed the space more. I then kindly told her to f*ck off!!!


----------



## Midnight_Fairy

ugh I dont blame you- what a witch!


----------



## Caezzybe

Midnight_Fairy said:


> ugh I dont blame you- what a witch!

Hey, that's insulting to witches :lol: ;)


----------



## Caezzybe

I started off taking Logan to "ordinary" baby group at the local Sure Start Centre and that was fine for a while. Then his friends were moving up to the Movers and Explorers group at around 6 months, so he moved with them. It's supposed to be for crawlers up to walkers and although he wasn't crawling (or even sitting) at that age, the staff were fine for him to move up and it meant he was still with friends the same age.

Unfortunately, the group changed due to some people staying there a bit too long and being asked to leave, they had children who were walking/running round and disrupting the group while the mums sat and chatted, leaving their young ones unsupervised. Now each week there is a "messy play" activity that all children are expected to join in with and be directly supervised by their parents. As far as I'm concerned, this excluded Logan, he is only just sitting and starting to commando crawl at 1 year old and I don't want him falling face first into a pile of jelly/custard/cornflour or whatever they are playing with that week. So I've stopped taking him there and he is missing out on some potential contact with his peers. I've been told he is more than welcome by the staff, but can't see how he can be included properly when all his friends are doing something else?

We are lucky enough to have a great group of friends that we met through one of the baby classes and stayed in touch with after. It means that Logan has contact with 6 of his peers and it's been doing him good as he has been copying their behaviour, something his paediatrician recommended. We do still have contact with the mums and toddlers from the Sure Start baby group but don't see them much any more apart from the round of first birthday parties that are going on. In any case, most of the mums are now back at work again unlike myself - I have mananged to take all my annual leave and then go straight into maternity leave number 2 as my second baby is due in December.

Logan's other activities involving other children are mainly with one of the local Down Syndrome groups who have lots of children of around the same age. He has an early intervention group, a new playgroup starting shortly and a coffee morning. I have also taken part in one of their Makaton classes. He also has a local authority therapy group with other children with multiple special needs (physio, speech & language, early years learning, occupational therapy). Interestingly, I had to pull Logan out of one particular special needs group as he was getting upset by slightly older children being disruptive and much older children not leaving him alone because he was the only baby and they wanted to cuddle him. The other parents/teaching assistants weren't making much of an effort to say "no" to any of this, so I felt forced to remove my son from the situation. Luckily, I did make one good friend at that group who I have stayed in touch with.

As far as the future goes, I'd be happy for Logan to take part in activities/classes/groups etc. with children who have special needs and/or children who don't. Then again, he is still very young and my opinions might change as he gets older. Also, I know that Down Syndrome isn't as much of a disability as some of you have to cope with on a daily basis and I can appreciate why things might be difficult for a child who has greater mobility issues or learning difficulties than I am having to deal with.


----------



## Foogirl

Lottie86 said:


> Do you ever get the 'well I had to carry my child around at that age as they used to get tired or didn't want to walk anymore and they were bigger than your child' from people? I just want to turn around when people say that and point out that they don't have to lift and carry their child _endless_ times a day for years as their child is capable of walking and so it's not the same #^%*+$ thing at all!! ::growlmad::growlmad:
> 
> Ok that's my rant over, sorry! :blush:

I actually get irritated when I see people carrying children who are perfectly able to walk. I just think "fuck sake, put them down, I would give anything to not have to carry my child.". Irrational and stupid, but I just can't help it.


----------



## Midnight_Fairy

Caezzybe said:


> Midnight_Fairy said:
> 
> 
> ugh I dont blame you- what a witch!
> 
> Hey, that's insulting to witches :lol: ;)Click to expand...

I mean bitch lol xx 

I have started back at my mornings with mums of children with additional needs, damn I missed that place over the summer. Its good to be back! I love my friends of NT children but you know, Its nice to have people that understand the isolation from normal society in some ways x


----------



## Foogirl

Midnight_Fairy said:


> I mean bitch lol xx
> 
> I have started back at my mornings with mums of children with additional needs, damn I missed that place over the summer. Its good to be back! I love my friends of NT children but you know, Its nice to have people that understand the isolation from normal society in some ways x

"NT" children?

I so agree about being with people who know. As the mum of a premmie, most of my mum friends are the same. Even though mostly their children turned out to be fine, they still have an appreciation of what I am going through, and also what I have been through. To me that is invaluable.


----------



## 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. :thumbup:


----------



## 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

Tegans Mama said:


> 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

:hugs: xx


----------



## Lottie86

We use the abbreviation NFF - normal for Findlay :haha:

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

Midnight_Fairy said:


> 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

:lol: 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 :nope: 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 :thumbup:


----------



## 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

Lottie86 said:


> 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 :thumbup:

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.



Midnight_Fairy said:


> 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. :shrug: 

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 :rolleyes:


----------



## Foogirl

Tegans Mama said:


> 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.....":dohh: 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. :hugs: 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.


----------

