Can I Ask You About The Attitudes Of Your Friends With NT Children?

[boolifooli]

My DS who is just 3 has ataxia and walks like a 1 year old. I have often felt frustrated and sometimes even hurt by some of my friend's comments. One friend has a penchant for saying things along the lines of 'isn't it a shame he can't walk and run like other children, I feel SO sorry for him'. Maybe it shouldn't but it makes me want to scream! I have avoided her for several days after some of these gems. I do like her but I really wish she would try to be a bit more positive for me. I mean does she not think it has never occured to me? Does she not realise how much I worry all the bleedin' time about his lack of upright mobility. Argh, today I'm feeling like Peter Griffin doing a segment on 'You know what really grinds my gears' lol.

Simple
They have all buggered off
Find it much easier tbh being around others who understand and don't make bloody stupid comments, like is he talking yet,out of nappies etc.

But I'm quite flattered when friends ask me if my dd2 is talking/continent/whatever: its meant as a compliment, to inquire about the progress of your friend's child, whether sn or not. I certainly wouldn't consider it a "bloody stupid comment" . For the friend, it can be a conversation opener because they are genuinely interested in her progress - and if they're not, I still give them the full details! It spreads the word about how looking after a kid with sn is full-on!

I remeber years ago when watching a programme with disabled children in it, DH said, I don't know how you can watch these programmes, its so sad. I could never cope with a disabled child, I feel so sorry for them.

Roll on a few years.. out pops ds2, CP, ASD etc etc.. he is of course the apple of dh'S eye.
DH 's problem was pure ignorance, he had never known a child with a disablity & taking a glance at a TV programme he saw the disability & not the child.

Anyone who really gets to know our children, & sometimes that can be a hard thing to do, will undoubtedly love the child first & the disablity becomes secondary.

Sometimes friends with NT children of similar ages are so busy comparing & & saying thank god its not our children they forget just to relax & enjoy being with our children.

I had a real karma situation today - when dd was 6 months old I was explaining to a Mum at toddlers why she couldn't sit up at all yet. The Mum said 'I could never have a child with sn I would have had her aborted or adopted' so I told her it wasn't really a choice as dd was starved of oxygen etc etc. Anyway she's just told me today that her eldest dd is having an mri scan and they are suspecting she has muscle stiffness and has had since birth. Of course she's in a right state and was asking me for advice..

Just goes to show sometimes those crass comments do come back to haunt us!!!

I get "I don't know how you cope" and "You are so patient!" a lot from the school mums and some of my friends. I just reply "I find a bottle of vodka a day helps". They either get my little joke and laugh, or look at me as if I am bonkers and ru for the hills.

Scottie, your poor friend.I'm sure her comment was just pure ignorance, and probably fear of the unknown. I wouldn't say it was karma. Nobody deserves karma to come back like that. I wouldn't wish that on my worst enemy.

Didn't mean to sound unfeeling but I can't tell you how much her comments hurt me when I was so uncertain about dd's future. Of course I feel bad for her and I wouldn't wish what I went through on anyone but even ignorance wouldn't make me suggest a child should be aborted/adoped because they have sn

I can only imagine how you must have felt by her comments. Sadly there are a lot of people with this opinion . Sorry, I wasn't having a go at you, I knew what you meant, your post was just badly worded.

I had a friend, a best friend, who was also godmother to my ds1 and 2. She knew how hard I was finding it dealing with ds2's dx and how I felt about having him use the SN bus to school (which I have long overcome). She posted a few things on her FB account about SN buses, window lickers, etc and we are no longer friends because she couldn't see my problem. She is still posting things like this, I've been told she is.

Meltedmarsbars, of course you are entitled to your own opinion, however when you have a severely disabled child who will not reach the milestones of speaking, being continent etc and is now nine years old then perhaps you may see them as being bloody stupid comments.

When I started this thread it was particularly about long standing friendships.Some parents without SN kids just know how to handle parents of children with SN for want of a better expression and actually try to comprehend the worries and what would be helpful to say, and what would sound hurtful. And to be fair, in general, some people are just more thoughtful and tactful and 'thinking' than others and I guess it's these types of people and parents that we are most likely to find it easier to have a meaningful relationship with.

Before having a child with SN there were times friends would handle things badly and make me feel worse when looking to them for support or reassurance and it's likely that they will probably not fair well as friends in any difficult long term situation. It's just one of those things that sorts the wheat from the chaff.

I guess we have to be more fussy about who we invest time in. I can't feel guilty for deciding to give a wide berth to long term friends that are continuously leaving me hurt and frustrated. It's just one of those harsh realities of how things have changed for us.

I told my friend that ds1 has now been referred to CAMS and she said "what are you going to do when the report comes back saying that he is fine and its just you that's bonkers" and she wasn't joking. She asked again "why are you doing this" and I tried to explain how we cannot hve any semblance of normal family life without frequent meltdowns (which I can now not deal with physically as he is very strong) and she looked horrified (as usual) and pointed out that I really needed to be firmer with him .

Very true about sorting the wheat from the chaff boolifooli. I've distanced myself from friends who I find are a bit insensitive anyway because I just can't cope with it right now (eg gushing about their lo's latest acheivement when they know my son has problems), or those who I otherwise find ok in small doeses but not more than that (a friend who is quite overbearing and a bit of a know it all who tells me that 'autistic children don't smile' and 'your son's autistic because he's introverted' like it's a personality trait). Sadly my best friend was very unsupportive during the diagnosis process and although I'm less inclined to dissolve a friendship which I've had for more than 25 years, I don't think I will ever feel quite the same way about her. The best support I've had, and the people I feel most comfortable around, are those without kids of their own, but that could just be coincidence.