Do you distance yourself?

Midnight_Fairy

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

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
 
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:

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

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

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

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!!!
 
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.
 
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.
 
ugh I dont blame you- what a witch!

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

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
 
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.
 

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