Here some suggested organisations that offer expert advice on SN.
I think my husband is ashamed of our children.(26 Posts)
Bolt from the blue this morning.
I email our nephew's wife in the US, they've just had a baby and she sends me pictures etc.
We were chatting about my children and I made a crack about my eldest's latest obsession and the joy of autism (this is not a thread about me making jokes, it's how we cope and it works for us to find a way to laugh)
She didn't know.
Neither did my nephew.
I told my husband that I didn't know they didn't know, and they must think I am a real weirdo randomly cracking jokes about autism. And I was replying just to fill them in and let them know that I'm not some horrible person who mocks those with disabilities!
He stopped me.
He said don't give them too much information. I am to pretend that it is very mild and barely affects them at all and if you met them you would think they had no difficulties at all. I am not to describe any way in which they are affected because it is their information, not mine and I shouldn't disclose information about their lives. And any disclosing of their information is me being like my mum and dad - using their children's personal struggles to get attention for themselves!
Our children didn't talk until they were 6 and 7, didn't come out of nappies until they were 5 & 6, our youngest was largely echolalic until a few years ago, he's possibly going to be medicated for ADHD, 5 minutes in a room with him and you know!
I wasn't proposing giving them a minute by minute account, but to be accurate. He made me delete it and I am to give the impression that they are barely affected at all.
I feel really uncomfortable about this. It feels like he is ashamed of the children and also - eventually we are going to meet all his family! He's on about us all going to Kenya next year. How the holy hell is he going to hide it then when there they are in all their stimming and ignoring you glory?
His mum has come over twice, but she didn't speak any english (she's since learned a bit) a few siblings have come over but mostly when the children were much younger. I think the brother that he has over here knows. But my husband talks only of 'communication delay/difficulties'.
Telling our family the actual extent of our children's autism isn't about getting bloody attention! There's no desire for oh poor you what a hard life you have we don't have a hard life! But to try to disguise/deny their autism is like denying a part of them. If that makes any sense. It makes me feel like he's ashamed. And I am angry that anyone could feel anything other than proud as hell of my wonderful children.
Oh dear... Im sorry to hear this. Sadly this is not so uncommon amongst families, I hear from so many school carers of children diagnosed with moderate to severe difficulties that many many parents refuse to accept their child has a need, which I can't get my head around but it's usually to do with the "shame" of having a disabled child.
As you said how are you going to "hide" things when you go to Kenya, if the family are not aware, they will think you have rude rotten kids, then talk about your poor parenting and this is where I worry about you and the kids. I would never want a couple to cone to blows but I think you should urge your hubby to rethink his decision or simply tell your nephew, especially if you are going away and the kids will be meeting other family members, etc..
Very sorry to hear this: I would be angry and hurt- and I expect you are. If their own father can't be proud of who they actually are in the face of the whole world, then who can?
You need to have a very serious talk with your husband about this. Are there cultural differences that might make him worry about how his family will cope? You need to spell it out very clearly that unless your children's situation is fully explained, then they will be judged badly behaved and poorly parented- and there is no culture on earth where that is not considered shaming. Make it clear that you will not consent to visit his family unless explanations have been given, as it is not fair on your children.
That's what I fear - that they will be seen as out of control children and that people will judge them, not knowing that there is an actual problem. Or not understand that they can't give them the same level of freedom (any freedom!) or responsibility that you would give children of their age?
The thing is that he fights hard for them to get all the help they need. He isn't in denial about their condition, he just doesn't want to tell anyone who, in his words "doesn't need to know". How can you not know? How can you not need to know if they are your family or if you interact with them?
And how do we explain to his family how to keep them safe if they don't understand? His mum is expecting us to leave the children with her when we go to kenya - as all her grandchildren are, they all have a great time. But if they don't understand the need to manage them differently, how are they going to keep them safe in rural Kenya (or anywhere!) And what when they try to talk to them and my youngest walks away? or my eldest does a flapdance? or my youngest beeps and wheeps at them?
And, most importantly, what is WRONG with people knowing who don't 'need' to know. It's nothing to be ashamed of, nothing to hide.
Oh dear I read your post and agree with what your saying but have to confess that we have not disclosed ds's diagnosis to our families. A few friends know and obviously school etc. it's genuinely not about being embarrassed or ashamed of him, in fact I'm very proud of ds. I think it's fear of how others will treat him or that family will turn it into a huge drama and it will be the focus of EVERY discussion. Ds bobs along well at home, we are happy and home life sn't hugely affected so I guess i do subscribe to the thought that I'm only interested in discussing with those who will be beneficial to ds's progress and I have no energy to deal with ignorance and "helpfully" advise others.
Oh I don't know but your post is food for thought and maybe I'm wrong. (not helpful to you whatsoever!!!)
Although I have to say that now you've told them that you dc's have autism I do think it would be a little odd to pretend they aren't really affected by it. Friends that do know of ds's asd I am totally open with.
I minimise how much my DS's AS affects him to a lot of people - not because I'm ashamed of him at all, I think he's fantastic and because of that I don't want people to see only the AS and the problems, if that makes sense.
Not to people that he spends time with though, they need to know.
My PIL don't know the girls have autism or how it effects them. Mainly because they never see them.
There are some cultures who refuse to accept SN and are very horrible about it. Have his family shown any signs of understanding SN?
I understand that your upset but dh knows his family and maybe he knows they just won't get it.
I wouldn't leave my kids with PIL
Tough one. I don't know if dh ever got round to telling his family dds offocoal diagnosis. But she wasn't until she was 13. my own family know but i really don't think my siblings have any idea at all what aspergers or autism actually is and what it means for dd or us.
My husband and I come from very different backgrounds, like OP. I think you should take a deep breath and try not to build a huge "he is ashamed of us ahhhhhh!" scenario about this. Yes you need to come to some practical arrangements as to how you are going to leave ds with grandparents with some training (by you). But you wold have had to do that anyway.
Your husband knows his family and culture. He loves your children and is fighting for what they need. Why would you think this is any different?
Perhaps Autism is considered a dead end there and he wants them to know his kids before writing them off?
Perhaps it doesn't translate well (I can't describe how difficult it was for Dh to find out if he'd had chicken pox as a child! He hadn't.....he has now) . In which case communication delay/difficulties is not a bad start.
Perhaps he thinks they will be devastated and it will be easier if they can hold you and the children while they come to terms with it?
Perhaps he wants to look into their eyes when they hear/see and make sure they need to be part of his kids lives?
Perhaps he still on some level believes they will grow out of it?
Most likely a messed up muddle of some or all of the above. Love each other, love your children. Help each other where you can. Eat a lot of mango and come home brown, happy and stronger.
Hecate, I don't know if this helps but I often tailor my explanation of ds' difficulties to the audience and for the benefit of DS. So when trying to get him into a swimming class I might say communication difficulties to avoid frightening the teacher, or to DH's cousins, language delay with some sensory problems. He also managed a whole half year in an Indi preschool with 'communication problems' as I never disclosed the dx.
I am not ashamed. I am carving a path for DS. Perhaps your Dh wants to start with communication probs until they meet them so that they don't form any prior opinions or fears!? Also, your Dh might not understand in the way you do, the extent of their problems. My DH spends loads of time with DS but I can see even still he does not 'get' something's because he just hasn't spent so much time researching etc.
Thanks folks. Lots to mull over. Lots of really good points and insights. xx
Poor you that's a difficult situation. I think it's got to do with cultural differences, here in UK the attitude towards disabilities has got much better than in the past, but it is not the same everywhere...I'm Czech and over there my son wouldn't have have global development delay, he would be 'retarded' - normal medical term still... My husband is South African and he used to also play down ds problems in front of his family... partly he was in denial and partly he was worried how they would react.. So you are not alone in this, he told them recently everything in detail, but no support anyway, they all respond in the same way, 'Oh he is just a bit slow, he will be OK' - denial again. Hope you find a solution as how much to say and to whom. ...
How sad for you op. Has he given no inclination before that he felt like this about telling his family?
I agree with zzz and star. FWIW I think there's a far more complex muddle of emotions going on than being "ashamed", and also wonder whether he thinks being vague about the DX is better if his family wouldn't understand autism. As you know, my DS never did get the DX of ASD, but other than my nearest and dearest, relevant health prof and schoo, a(nd of course all you internet sprites on MN) etc I would always describe my DS as having language delay as it just seemed simpler.
I agree that the dads deal with this in a different way to the mums.I know with us that I spend my life researching,reading up,finding websites/forums etc and I feel I know ds (aspergers) inside out. Dh on the other hand never looks at stuff online,doesnt talk about it much and just engages normally with ds as he would have before dx. While I often feel that dh just isnt interested enough and wish that he would talk more to me about ds's asperger's I am coming to realise that maybe this is just his way of coping with it all. Its probably better for ds in the long run because we balance each other out.I am OTT whereas dh acts as if nothing has changed really.Besides I now feel that I havent the energy to waste on worrying about dh also so I just concentrate on ds and what support I can get for him.Dont worry OP, he will probably open up more when he is ready.
I've had something similar myself with my youngest son aged 6 who is autistic. Showing his Dad a video of him in his school play where I'm beaming with joy that he's even on the stage and actually smiling for him to give the response "I can't watch anymore, you can really see he has mental health difficulties, he looks autistic, please don't show my Dad (sons Grandad) he will be embarrassed!!" Ok I suppose it was clear that Daniel had special needs by the constant moving around and chewing his jumper and refusal to sing while the other children on the stage were singing perfectly and doing all the moves to the songs. This really upset me however as I was just so delighted by the progress he made to even take part and actually manage to smile at me indicating he was not quite as uncomfortable as he appeared. While I watched it with adoring love for my son he clearly saw a child that was an embarrassment to him and his family. I'm really upset but unsure if I'm being over sensitive.
Old but very interesting post!
I have made a conscious decision to only tell certain family members and close friends my DS asd diagnosis.
Don't want people to feel sorry for me which has been my immediate families reaction.
If I didn't have to tell these people I wouldn't have said a word.
Fuck it, tell who you like. His shame is his own business
I took 2 years to tell my own parents but there was a reason I held off. I had bad social anxiety as a child and teenager and my parents were completly over anxious about this and put huge pressure on me to socialise. I was always ashamed of the way I was. When DS was diagnosed the fact that he too might have social difficulties reminded me of the painful time in my life. I didn't want my parents being all doom and gloom about DS. I've told them now and their reaction is ok. I find my sister annoying though because she kind of puts a focus on DS because of it.
Crikey. Talk about a blast from the past!
Since I posted this, things have certainly changed for us.
Our youngest has dual dx of asd and adhd, he was on equasym for quite some time but began to have a bad reaction so was weaned off it. He has become violent when stressed and has had episodes of self harm. He remains volatile and unpredictable and funny and kind and amazing and stroppy and loving and a gigantic teenage pain in the arse
He will require a group home with 24/7 support for the rest of his life. He currently has constant 1:1 at school, increasing to a minimum of 2:1 if he is offsite. He still rarely talks but has bursts where he can be very engaging. He spends most of his time at home alone because he needs to recover from being with so many people at school. He has a mobile phone now and prefers to text. He is VERY chatty over text but very rarely verbally. Getting him that mobile was the best thing we ever did for him! I actually get to chat with my son now!
Our eldest had a very bad year where his mental health deteriorated as he came to terms with his dx. He is much improved now and is very happy. He has become more independent and is at college, he will always need support but it looks like he will manage some sort of independent living accommodation - say, his own flat with support. Time will tell. He has a group of friends with similar needs outside college and they are supported to do things like go watch sporting events, go to a film, etc and he has a mate he hangs out with a couple of times a month for pizza and movie night. He is the happiest he has been in years.
My husband remains unwilling to disclose their dx to anyone who does not need to know and fierce in fighting for the support they need.
Which is better than the other way round!
I no longer believe he is ashamed of their challenges. We have come together on this now and both feel that it's none of anyone else's business and the only thing that matters is they get the support they need. Joe Bloggs in the street can be strangled by his judgy pants for all we care.
I think I was just so afraid of anyone thinking badly of them that I rushed to say it's not their fault, they aren't badly behaved/brats/rude etc... But I came to realise that was my issue not theirs and some people will always judge and that's just tough.
They all went to Kenya and were welcomed with open arms. the entire family was absolutely thrilled to bits to meet them, thought they were amazing and loved them and totally accepted them just the way they are. The cousins are all friends with each other on facebook and everything.
Right now we are transitioning them to adult services and doing some long term planning. In maybe 10 years or so (they are 16 & 17 now) we should be looking at moving them into their own homes, whatever form those homes will take.
What really lovely update. 2012 was when thing unraveled for us. This thread has reminded me how wonderful it was to find MNSN and all the things we used to discuss so easily.
sorry you had a hard time too.
yyit's been an amazing support and resource for me over the years.
i only hope ive given a bit back too.
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