What support do you expect from your family?

[beccaboo]

I had a real hum-dinger of a row with my mother over Easter. I really lost it, I was screaming at her. I feel bad about it now, but I'm just so disappointed with the level of support she's giving us.

She lives at the other end of the country, so I obviously don't expect her to babysit often or anything like that. But I wish she would make an effort to find out about autism. She hasn't read a book or asked me any questions about ds' condition, how it affects him or what it might mean in the future. It's like she's blanking it out.

While she was here she said she didn't think his speech was much different to any other three year old, and did he really need speech therapy. I was so taken aback, all I could think of saying was that with NHS SALT being as it is, he definitely wouldn't be getting it if he didn't need it.

Maybe I expect too much. But he is her only grandchild, and I thought she'd be a bit more pro-active.

[colditzmum]

I dunno, my mother lives 10 minute walk away. and she takes very little interest in her only grandchild.

[beccaboo]

It's depressing isn't it? Thing is, my mum is very interesting in ds, loves spending time with him and is always buying him presents - it's just the ASD part she ignores.

[unicorn]

We aren't strictly special needs category - but I have needed support over the last few years with my 2 very active children.

My family have never failed to disappoint me.

I think I had a rather rosy eyed view of family until I had my own, and I am afraid my lot- siblings particularly, are a very selfish bunch, who have offered zilch.

I see some friends who seem to be coping brilliantly - look behind them and you find they have a network of grandparents and aunts and uncles etc.

Sorry to rant - a bugbear of mine this!

[MeerkatsUnite]

Beccaboo,

My parents aren't all that supportive either or show much interest.

I think your Mum is perhaps blanking it all out also she cannot or will not accept her grandson's difficulties. However, ignorance is no excuse though for how she is behaving and I personally think her behaviour is not on.

Was wondering how your Mum responded to your arguing with her.

[coppertop]

We get no support whatsoever from family. My mother lives a 10-minute drive from us but never babysits. In fact ds2 has only been inside her house once and he's 2yrs old. The only sibling who shows any interest is my youngest sister. She has a baby of her own and lives way down south. Bizarrely my mother has actually looked after my sister's baby more in the few months since she was born than she has my boys in the past few years.

I went through a stage of trying to generate some interest in ASD. I lent her a book and the video that MrsF copied for me. She hasn't read/watched them.

Like Beccaboo's mother she likes buying them things and visits them every few weeks but has no interest in ASD. She still sees ds1's ASD traits as naughtiness and I'm fairly sure she thinks that ds2 spends most of his time in just a nappy because I can't be bothered to dress him. The look on her face when ds2 ran out into the snow in just his nappy was truly priceless.

[KarenThirl]

Sometimes grandparents can't handle the fact that their grandchildren aren't perfect. I'm pretty sure now that was the reason I couldn't get my in-laws on board all the years I was trying to get a dx for J, and dh was the same. Didn't want to face up to the facts that J had problems. What I always found hard though was being unable to talk normally to mil about day to day things, the way we had to have routines etc or how J had to be managed in a certain way. She used to tell me regularly that she thought that all he needed was a good smack to make him understand how to behave properly. She's much better now that school and psych have acknowledged J's issues, but I'm not looking forward to the conversation we'll need to have if we go ahead with the GF/CF diet - she still feeds him crap whenever he visits so she'll not be pleased!

[macwoozy]

I really can sympathise with you beccaboo. I also know what it like to recieve no support. I would be astounded if I saw any of them read a book about ASD. Throughout my ds's life, I've had them say to me "don't worry he'll catch up". That is so irritating to hear when its obviously much more serious than that. Right back at the beginning when I began to speak about my concerns with my ds, I always got knocked back, telling me just to stop worrying. Even now I don't always think that they believe his behaviour is down to Autism but more to do with being an intentionally disruptive spoilt child.

[Jimjams]

My IL's spebnt years telling us that they knew exactly what it was like having 2 children (except I'm sorry but they don't- add autism into the equation and it is totally different), they also told us ds1 would catch up, be top of the class. FINALLY last summer it began to dawn on them. Ds1 is now almost 6, still not talking. We bought them George and Sam and a Lorna Wing book, marked pages with post it notes and comments and sent it to them, then insisted they read it. Now they are much much better. They help when they visit and have finally realised how hard it is. But he is 6 and not talking, so it gets hard at that age to pretend its all OK!

[Jayzmummy]

Families argh!!!! you cant choose them can you?
My family all sat us down a in march and basically over a lage sunday roast the disscussion got on to ASD.......havent spoken to them since.
They all have small minded ill informed opinions about ASD and SEN in general....all taking the line that you should "beat the child to make it behave."
My mother phoned last night to see how things had gone with the CP....I told her....her response to J being dx with Autism...dont worry dear he'll get better.....one day he'll just snap out of it!!!!!
Middle sister is the only one I have any real contact with....she was dx with Aspergers when she was 24, so she knows and understands me when I witter on.The rest of my family I really have not the time for....if they cant deal with having an "adopted autistic nephew/grandson" thats their problem NOT mine.

[JakB]

Oh blimey, Beccaboo, it's so difficult. I think that grandparents can find it so hard to accept their grandchild's autism. My in-laws have totally blanked it out and the only thing they seem to really 'rate' is whether dd is talking or not (which she isn't). My mother, on the other hand, is absolutely wonderful and has a real affinity with dd but I'm very, very luck on that score

[unicorn]

beccaboo...
would you mind if I asked this question in a general parenting thread, as I feel it is very relevant to non sn parents too?

[sparklymieow]

My parents are a great help, very understanding and supportive but MIL just like the attention she gets for having 2 disabled grandkids IYKWIM. My SIL is great and treats the kids normally and wishes she could help more, but she lives 40 mins from here and on sat. she is moving 4 hours away
Dh's real dad wishes he could help but he lives in Poole and doesn't get here often.
MIL doesn't like to have my kids because they "are too much hard work" DH is helping his sister move on sat. and is driving a luton van all the way up to Manchester and back. MIL said he shouldn't do all the driving and he said that unless we can get someone to look after the kids he has too, because I can't leave the kids, she said "well, I can't" and DH said "well, I'll have to do all the driving then as M (me) can't do both things!"

[Chocol8]

Looking at this thread I guess I'm quite lucky. My sister is fantastic (we are close anyway) and sees my ds all the time as she has a NT ds the same age. They get on well MOST of the time. She has a 15 yo daughter who we are 100% sure is undx AS.

My dad just doesn't want to acknowledge his dx. If he doesn't talk about it, it's not happening. He took him out today - about a mile to the doctors on his bike - uphill - and back again. Whilst he "popped" into the docs he left my ds near the porch area and told him not to go in the car park or road (I nearly exploded!!!!). My dad had a strop this morning as he didn't want to use ds's booster seat and I told him he had to. He has him for the day again next week and I'm sort of dreading it.

When my Mum was alive, she was fantastic with him - always taking him out and showing him the garden and doing things in the kitchen etc. He used to wear her out as she was not in the best of health, but she still did it.

I think i'll take the idea of giving my dad a book on AS and asking him to read it.

[jmb1964]

Expect nothing and you won't be disappointed is our motto.
My mum is elderly and physically frail, but also stubborn, and I think in denial about ds1 (AS). Just about every time we see her she says 'oh but there can't be anything wrong because he's so beautiful'. Where do you start?
Then PILs - physically fit, still drive etc, but live 3 hours away, and are always too busy to help. Only asked them once - ds1 had chicken pox and couldn't go to nursery, and dh and I both had work commitments we couldn't get out of. MIL was moaning about having been left at home on her own as FIL had gone off sailing, so we asked her to come and look after ds 1 (for one day). She refused, because... she might get shingles!! Not just selfish and unhelpful, but just wrong, but she would NOT believe me, so we've never asked again.
We have found it easier to build up our own (chosen) network of friends and helpers locally, and I try to suppress the green monster when I hear about other people's families..

[Merlot]

My mum and dad would move heaven and earth to help us, but unfortunately neither of them are in the best of health and whilst the heart is willing the body isn't always capable.

My inlaws are getting on in years too (mid seventies) and they live too far away.

[beccaboo]

Well it's comforting to know we're not alone - I suppose - but very disillusioning too.

Perhaps I feel our family are lacking because I compare to friends. For example, a couple I know have 3 kids, and both sets of parents (who live in Spain & Scotland) have the children for up to two weeks at a time while they go off for 'couple time' together. But reading all your messages, perhaps this is unusual .

When we got the dx my mother said "it's worse for me". I promise you she really said this . Her reasoning was that she had to worry about me AND my ds. I only have to worry about him apparently. Of course I also only have to look after him 24/7, cater for his gf/cf diet, ensure he gets his SALT, IEP ...... not that I resent a single moment of it, and he is the most gorgeous child, I adore him. But it is not worse for her.

My MIL is on the defensive. I asked her(in what I thought was a casual manner ) about her niece, who dh and I are sure is undx-ed AS. Her response? "I hope you're not saying it comes from MY side of the family".

Although, Coppertop, I feel bad for moaning - I'd be a lot more p'd off if my mum lived 10 minutes away.

[beccaboo]

Unicorn, of course I don't mind, I'll be interested to read the responses.

Just read my previous post. Since I discovered emoticons I've been emoticon crazy . Sorry about that.

[coppertop]

I have a friend with a toddler who is a similar age to ds2 (the toddler, not my friend! ). She is also the sister of one of my closest friends. Her parents look after her ds for her a couple of days each week so that she can carry on with her part-time job. They never seem to resent this. The parents are also the same lovely people who offered to look after ds1 for us for a few hours while I was in labour with ds2. No-one in my family bothered. They (my family) didn't even visit me in hospital.

I've reached the point where I've given up hope of any help. We accepted a long time ago that they would never be babysitters etc.

[beccaboo]

Coppertop - . If I'm ever lucky enough to be a grandmother, i'm determined to be bloody wonderful at it.

[lou33]

don't expect any

[Davros]

I've never had any help from family and don't expect it now. Sadly my dad died when DS was 5 months old, he was great with kids and would have been wonderful with DS and DD. I think you'll find its very common for people in our situations not to get help from their families but also to find them more of a burden with having to justify everything to them and them being judgemental. We do have family members who could help but if you don't expect it you won't be disappointed. Last year we asked SIL and BIL to come on holiday with us, everything paid for expect flights which would have been about £100 in total both ways. They said no so we coudln't go on holiday. I also asked my niece who lives up the road to drop in on Xmas day to break it up for us and give us a bit of company on what can be a difficult day, she said no

[Twiglett]

Can I just mention the generational difference in terms of verbal support

I think it is actually the way people were brought up (I certainly was) to minimise any perceived or actual problem to the point of actually denying it is there

Maybe by saying 'his speech wasn't much different to any three year old' she felt she was being supportive and putting your mind at rest?

I know from personal experience (not with my kids, but with DH) that this 'brushing it under the carpet' is extremely annoying / frustrating / makes you livid, but have come to accept that it is just 'manners' and a bizarrely twisted form of support and I won't be able change it

Just out of interest, my mother said to my sisters that 'I've had my children, I don't want to do it all again, I can't be bothered' and proceeded to be a grandparent that wouldn't babysit or do anything to actively 'help' - she is very loving, and has changed in the last 17 years and does lots more now though

I know you need the support, I know you deserve it but unfortunately its not a god-given right that your parents provide it - they may just be knackered and wanting some peace

[Davros]

I think its true that a lot of grandparetns are much less interested or active with their grandchildren than we might expect, whether SN or not. I also think that, as Twiglet says, they often found being parents, especially the mothers, very hard work and just don't want to do it again. They envisage grandparenthood as getting the pleasures without the hard work. So I'm sure its not uncommon for people with NT kids too (whcih includes many of us too) but when you have a child with SN you DO need more practical support and finding that you'll only get it from others in the same situation or from people you pay is very disappointing.