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How do you deal with a family member who will not accept that your child has SN.(30 Posts)
DS has autism, dyspraxia, SPD and Hypermobility. Obviously these multiple conditions have a great impact on his behaviours and he can be extremely challenging, especially at school and when away from home.
However he appears "normal"much of the time and functions well. Various family members
inlaw grandparents do not accept that he has any of the above condtions and therefore do not make the allowances needed for him.
They don't say too much to me but to any other family member who will listen they have stated that it is me making it up for attention, that ds has issues because of the problems me and his dad (their son) had in our marriage. He loves them and I know they love him but after has visited them unsupervised by me there is always a massive meltdown and I know that their dealing with him ie by being super firm and sharp toned with him to prevent any "nonsense" makes him massively anxious because he simply cannot process why they appear to be angry with him. The meltdowns have happened in front of them also and this simply cements their view of how badly brought up and naughty he is.
He cannot manage at school at all, his anxiety there makes him a danger to himself and others my inlaws tell me that he needs to be "sorted out" and he is going to "have to learn to fit in!" I have tried to discuss it calmly but they simply do not listen. They also suggest ridiculous activities for him eg quad biking which he is not physically or mentally capable of doing. On holiday I practially had to physically hold onto ds to prevent them from putting him on a bloody jet ski!
I try not to let it worry me but I get more and more unhappy about it and I know that one day it will just explode out of me how stupid and ignorant and cruel they are towards ds because of their unwillingness to accept his conditions. They are his family for crying out loud, supposed to love him.
I suppose this is more a rant than anything else because I can't see a solution that does not involve me verbally ripping heads off next time a situation arises.
It is very, your poor Ds and poor you.
You don't need this garbage, it is bad enough getting it from strangers but from family its worse.
FWIW you are definatly not alone, on this board there are a number of people who have trouble with families.
My family are a mixed bunch, they vary from being very supportive to thinking I have spoilt Dd3 and treat her like a baby.
TBH I don't let them look after Dd3, my sis is ok and I would trust her to be caring towards her but the rest of them think that if they impose their rules on her she will be fine.
Feel free to rant on here and maybe one day you will rant at them, so what you are only looking out for your Ds and you have every right to do that.
Take care and be kind to yourself.
Rant away. I had DMIL saying well all children do that blah blah at the weekend. Well quite clearly not as the other two grandchildren managed to say hello to the family and not hide away upstairs and the other two gc aren't being assessed for ASD
However that is far away from trying to get him to jet ski and quad bike
my inlaws dont know about our girls, and we have no plans to tell them as they dont see the girls.We do however have friends who say that the girls dont need dx, and LA is too quick to piegon hole children
I would be tempted to write them a letter, give them a copy of doctors letter and include a leaflet about ASD ect.
I get "Oh he can't be autistic, he has a great imagination", "my kids do that too", "Oh leave him alone, there's nothing wrong with him", and "fill him up on mashed potato, that way he'll sleep" (that particular gem from my Mother!).
Would be it any use to get them a simple book to read about his conditions do you think?
Aww poor you and your DS
I dont know what to say other than you know your son and they are refusing to learn to really know your son.
If his meltdowns get worse keep him home and tell them he cant handle it. Send them a few books like others had suggested and perhaps invite them on a autism course to give them an insight or something. x
That sounds so hard, what you need is support not another challenge
I bought this book recently for me, dh, our ds's, family, friends - anyone who I thought might need to read it really... and second the idea of letters, 'evidence' - could someone speak to them for you??
I guess, do you want to change their ideas or for the time being just protect your little boy? It sounds like it'll take a lot of emotional energy to tackle, huge hugs xx
Rant away. You have my sympathies.
Dh's family don't know about ds1's dx because they already rant regularly about modern nonsenses such as ADHD and Autism and its all in my day they'd have had some proper discipline and that would have sorted them out, etc.
As a result, we have had to distance ourselves from them more and more over the years, to the extent that, despite them only living ten minutes away, we only see them a handful of times a year, when we absolutely can't avoid it without causing a huge family row.
They haven't babysat for us or been left alone with the dcs at all since ds1 was a toddler, because they just don't have the level of awareness or understanding necessary to keep him safe and get cross with him for things he has no control over.
Ironically, ASD appears to run through the male side of their family and can be traced right back to some rather colourful characters around 100 years ago, who were well known in some very high brow societies for their 'eccentricities'. Dh's dad almost definitely has AS, his brother (now also distanced from the family) suffered terribly throughout school and now admits that he would have got a dx of AS himself, if his father hadn't physcially removed the Ed Psych from their house when he came to do a home visit. The same brother has a son who has AS, who he refused to let them dx and who has also had a terrible time at school. Both he and his wife have now admitted to us that they do believe he has AS and regret not allowing the dx. Finally, it now looks like dh's sister's little boy also has AS, which is something dh and I have suspected for a couple of years. He is in his school Reception year and the school have approached SIL and her husband with their concerns, only for them to say the school is talking rubbish and there is nothing wrong with him. Its all very sad to see the effects of all the denial on those members of the family that have ASD.
As far as they are concerned, I am just over-anxious about my children, far too controlling of their diet (we are all veggie and ds1 is gluten free at the request of his Paediatrician) am generally too uptight and all that's wrong with ds1 is that I have brought him up to be a cissy. They also think I have somehow poisoned dh into thinking the same way as I do about these things. Er .... no, actually he has to live with ds1 the same as I do and was there through all the assessments and the dx.
I know exactly what you mean about feeling like one day you are just going to explode and it will all just come spilling out, as I have the exact same thought/feeling. The day that happens, I know I am going to completely lose it and tell them exactly what I think of their small-mindedness and what it has cost not only them, but also their grandchildren. I shall also remind them that families are supposed to love unconditionally and not judge or expect their loved ones to be different or more than they are just to fit their idea of the perfect grandchild.
In the meantime though, I will just carrying on avoiding anything more than minimal contact with them and spend the rest of the time trying not to let my anger towards them affect the way my children, because they are still their grandparents and they do love them.
Know the feeling. My mum spent a lot of time hinting that if we only hadn't chosen to live in a <shock horror> foreign country (aka the UK), dcs would be fine. Excuse me, they have Ehlers Danlos syndrome because they have inherited it from you, mother.
Or pointing out that dd didn't seem as bad as I made out when we were staying with them (that's because we were on holiday, she got to swim in the sea three times a day and didn't have to get out of bed until she was ready).
It has got a lot easier in recent years: I think as they grow older it becomes much clearer what the situation really is and that I as a mum am not actually in charge of making them.
i get this too..I get told that I just haven't "trained" DD enough and she "just isn't used to other children"..FIL said at the start that her regression was because we let her "rule the roost".
Unfortunately the worst offender is my auntie who also watches DD once a week when i am working, its rather stressful.
I agree with coffeepot, that educating them on autism and the various disorders is a good step in the right direction. They need to get their heads round the fact that it will take a lot of time for your son to get used to new experiences, reduce his anxiety etc. Perhaps the only way is for you to spend time with them alone explaining exactly what it's like, what the needs are.
It is worth making the effort with this as it could strengthen the family bond which looks like it might be stretched to breaking point. The alternative is to avoid meetings etc which would be awful.
You must also stand up for your son. If they speak to him 'sharply' you must deal with it then and there. Don't let them think it's acceptable.
I'm glad I found this thread we are currently going through the whole assessment process with ds and to date we haven't discussed it at all with dh's side of the family for many of the same reasons people here have posted about. I was thinking the other day if he does get a diagnosis we would have to tell them but I really don't think I can stomach it.
I can imagine all the insensitive comments, veiled criticism of our parenting, helpful tips from the daily mail on how to cure him and endless, endless amounts of discussion about it behind our backs.
Is he just 'catching up' ????? Arrrgggghhhhhhhh ..... as time goes on and the more you involve them the more they get it. I just thre it all in my parents face. We live 200 miles away but hooray for skype... she now see's it all constantly. The lycra suit and gloves, AFO's, Triton chair, walking frame and very soon wheelchair!!! It is easier for them and yep we wqould like to take the easy route of denial too bit life is not that kind to us parents... i now involve them as much as possible and although it is tough to see my mum shedding the tears i want to shed because my boy is getting a wheelchair... it goood for her to know i am not over reacting and he is not just catching up for his poor start.
He is who is he is... and every day i thank God he is mine.... i love him
Babble I'm always telling my mother about what my girl is going to be when she grows up - how many children she wants to have, etc etc. I make bald statements about her future - which she will have and which they often just think will fade away.
For the older generation, having a diagnosis of a disability meant losing your child to an institution for life. I try and remind them that times have changed.
I love my mum, but I know when (if) she is able to come visit next summer that she will really struggle with DS2's difficulties. My parents were extremely strict when we were growing up (my dad was a military officer and our behaviour "reflected on him" ). They were of the "children should be seen and not heard" mindset.
I know it's going to be an ongoing onslaught of "he needs more discipline" and such. sigh
MIL is fairly good, but doesn't really get it either. She thinks he will just grow out of it, and tends to get upset thinking he's being naughty over things he truly just can't control. Some of it just puzzles her as she doesn't understand why he does some of the things he does. But she IS making an effort, she is just having difficulty understanding it all, which is fair enough.
Our older son avoids all mention of it, I suspect because his son (our grandson) of the same age is having some speech problems, and it upsets him, so he pretends it's not there. All of it. I sometimes wonder if he thinks that will make it all go away.
I do find myself repeating things over and over, explaining things again and again. It seems like every time you turn around, they are making odd assumptions - not nasty or anything, just something they'd heard "someone else say" and assumed it was fact.
Funny but I don't get much advice - I wish I had got more in fact. Some of the best handy hints came from people who never understood the term SEN, but who have dealt with the symptoms in the past so have worked out their own ways of doing things.
But it's the 'discipline' thing that is very hard to deal with. But never say never, it's amazing what your kids learn from other people. Sometimes another adult can create a different relationship with a child that can trigger something really positive.
My nan thinks that ds should go to bootcamp 'that will sort him out'
My mum struggled for years to accept that ds had adhd and suspected autism. All I got was oh your mollycoddling him/don't be ridiculous theres nothing wrong with him, he's fine when hes with me/perhaps if you and his dad blah blah had stayed together he wouldnt have behavoural issues/its your parenting sheep.
she's more accepting now, especially after the panicky meltdown he had when we all went bowling when he couldn't cope with the noise and the lights and his 4 yr old sister and completely blanked my mother for the whole night.
It is hard when family members are like that, maybe print this out and let them read it.....
Autism Night Before Christmas by Cindy waelterman.
'twas the night before Christmas
And all through the house
The creatures were stirring
.....yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally all nestled in bed
When nightmares of terror
Ran through my own head
Did I get the right gift
The right colour and style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands
"he needs discipline,"they say
"just a well needed smack,
"you must learn to parent....
And on goes attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with the spectrum
The struggles and triumphs
But what they don't know
And what they don't see
Is the joy of we feel
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on his potty
Who cares if he's ten
He stopped saying the same thing
Again and again!
Others don't realise
Just how we cope
How we bravely hang on
And the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste
But what they don't know
Nor sometimes we do
Is that children with autism
We don't get excited
Over expensive things
We jump for joy
With progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock
You will realise
What it is I go through
And the next time to judge
I can assure you
That you won't say a thing
You'll be quiet and learn
Like the years I did
When the tables were turned...
We are struggling with this non acceptance at the moment. My DS is 7 and is in the process of being assessed. We think ASD and possible ADHD. We're waiting on a DISCO at the moment.
My MIL and FIL as well as my 2 BILs and my SIL refuse to believe there is any problem other than my failure as a mother. My MIL once commented, after I had said that smacking wouldn't work with DS (to my shame I have smacked him, that's how I know it on't work!), that I obviously hadn't smacked him hard enough!
Thing is that my eldest BIL is definitely on the spectrum and has other difficulties as well, he was supposed to be assessed as a child (he's nearly 50) and my FIL refused to allow an assessment to take place. My BIL is in a dreadful state, suffering from depression. It makes me so cross!
I'm afraid it has coloured a lot of the decisions I have made. When DH and I were making our will I refused point blank to allow his brother and sister to be named as Guardians. I have become a 'smile and nod' person. Sometimes I have to bite my tongue.
Now, if we go, we stay in a hotel or we meet somewhere neutral so that DS doesn't have to endure a tiny house filled with people who can't see how stressed it makes him. (Have I mentioned that they raised 4 kids in a 2 bedroomed bungalow, not because they couldn't afford to move but because FIL hates change? Hmmmm)
OK, rant over.
never oh dear you have chosen an unfortunate family to marry into. Your MIL and FIL are transfering all their failings onto you. You are very wise to keep an emotional distance from them.
Your BIL can get help that could change his life even now. I hope they don't continue to neglect him and he gets to access the help he deserves. Are his parents his carers - or is he just out there fending for himself?
Hi. There's a leaflet somewhere on the internet for grandparents about autism. I'll try and see if I can google it.
Well it is comforting to know we are not alone. at "fill him up with mashed potato" as a sleep solution.
I have often wondered how my in laws imagine I have pulled the wool over the eyes of the many professionals involved with ds and if I have to hear "well he's not like that when he is with us" or "well he can sit in front of a computer ok, why can't he hold a pen properly?!" again I may just implode. I can't even be bothered to try to answer anymore as i can see from their faces that they just don't "get" it and don't want to. I think I might say that actually "well it's been three years since diagnosis and you are still asking such basic questions that I feel you are obviously incapable of understanding my explanations". And the endless "examples" of how the diagnosis is wrong because he DOES make eye contact or he DOES hug us blah blah blah....
Such a sad, sad thread.
I have had lots of comments too about ds1....
My SILs boyfriend actually makes fun of ds1's "prancing" as we call it. Going to have to say something which will cause an almighty row
When he was dx as severely dyslexic my mum piped up with "he is NOT slow!". Sigh. No, mum, he isnt.
So sorry to hear all your stories too
That poem is awesome!
Last year on Primary Ed was a 'night before Christmas' thread - if there's one this year I'll post that
And yes my parents don't get it either. Lots of 'she'll catch up' etc.
Now they keep hinting they think DS2 has ASD - and I refuse to even discuss it with them They didn't want to discuss DS1 and DD, and made things harder, so they don't get to talk about DS2 with me now
Oh yes and the "well where did it come from then? No one in OUR family has ever had anything like that!". Oh right so there is no link to Grand Dad who has glass cases to display his thousands of pounds worth of bus collections in the living room and who also wears head phones to watch television while ignoring everyone, even when the house is full of people?
That poem is very good.
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