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Post-Dx grandparent reaction bingo, did I miss any? (Long)(36 Posts)
So two year ld gets his Autism Dx a couple of weeks so and we are waiting to see the clinical psychologist to have next steps meeting. Meanwhile, DF is over this week visiting us (we do not live in the UK and he has not seen DS since DS was 9 months old).
I decide to ot tell him about DX til he has been here a couple of days and had a chance to pay with/meet his grandson. I didn't involve him in the run up to diagnosis as tbh, what support could he actually give? Ad I couldn't cope with more hassle and questions. I did tell MIL both of worries and the Dx process and results and she has been fab, offering support, reading books we have found helpful and saying we are doing a great job.
I tell dad we have no way to tell him this easily but DS has been diagnosed with autism, at present his symptoms are mild and he has been referred for early intervention programme.
Dad responded and it really upset me. I just need to put it down here and try to laugh about it. And see if I got a full house of unhelpful remarks!
- 'this person who came up with this so called diagnosis, are you paying her? I wouldn't be sure you weren't being taken for a ride'
(There is no NHS here and health insurance won't cover diagnosis process so yes dad, we paid. The person diagnosing is a clinical psychologist, board-certified and published, who runs a clinic offrng ABA and Denver Model amongst other services)
- 'well, he doesn't seem at all like he has it to me' (after a few hours swimming with DS)
-'you seem very anxious about him, are you sure you haven't caused this?'
-'I have actually studied child development, have you? No.'
(He did teacher training in the 1960s!)
-'My godson didn't talk til he was 4 and now he speaks in perfect sentences'
- 'you must NEVER tell anyone. They will treat him differently.'
-' you are socially isolated. If he met other children regularly or was at nursery...'
(I am SAHM who takes DS to 4 toddler groups, 2 soft play sessions and a Friday afternoon play date every week. Except when I have visitors.)
-'all mothers worry with their first. You need other interests. You should send him to nursery and do something while he is there'
-'you always did too much reading and research. You can convince yourself of anything if you look at the Internet'
-'you're too defensive. You should listen to me better. And you ought to get a second opinion, I would if get one of having building work done on my house'
(At this pont DH interrupts and says there is nothing in the 12 page report he disagrees with about DS and that it is uncannily accurate and perfectly describes the little boy we love'
I am so fucking angry and a few days later he is on about it again, having met someone offering 'Super nanny' services locally, who is an educational psychologist, says we ought to call her in.
I love my father but he has been incredibly unhelpful.
And ...did you get anything similar and were there any gems he missed?
Sorry typos, in haste and on stupid phone.
18 months worth of faux pas in a few days
Give him time. Show him the kind of Grandparent you want him to be.
It's a bloody steep learning curve for everyone.
Hang in there. If you don't murder him an elderly ex teacher may be very useful in time.
Grandparents have a uniquely odd relationship with their grandchildren. When something hurts the child, they are not only hurting for the child, but their now grown up child, too.
My Dad was horrified when I said 'preschool have asked to get someone to observe DD1 because they think she's slightly behind and want to get her some help.' Utterly defensive and just couldn't accept that his beautiful granddaughter was anything other that perfect.
She's been known to have special needs almost 5 years now. Dad treats her like a precious jewel, yet accepts that DD1 is 'as DD1 is'. She goes to special school and he is glad of it.
Give it time. Be hurt that he spoke as he did, but don't hold it against him. He's just taking in the news and being thoughtless.
I think Lougle has a good point ..they will feel for their grandchild and for you yourself and what you are feeling and going through.
As a parent we can be very pro active and get our selves involved in doing things to help our child.....if you have just sprung this on him he will be in shock ...he has not been there with you through your pathway of diagnosis
like your MIL has ?
Just remember he wants to help and comfort you ...but just does not know how and maybe feels a bit "useless"(given his background) and a bit frustrated that "he cant make everything better for you"?
My mum knows some things about my ds's appointments (because he tells her he had to go the NHS again!)...and she will ring me to tell me X had to have another blood test the other day ...yes mum I know ...I took him and held him down for it !!!
I so know where you are coming from OP ....we just need a hug and not have to explain...and then worry about the parents we have just explained things to !!
Good luck OP
Give it time, but you might find, as bizzey says, there will always be some weirdness -my mum is now retired, when she was a teacher she was a bit of a SEN champion - but she spent several years in complete denia about DS's dxl*. Now she more or less accepts it but won't use the "A" word - so I get "children like DS...."
*denial - but if she spent any time with him, I soon got an exasperated "there is something -wrong- with him... you should get him checked out" . (always said loudly in his earshot - parenting by massive guilt trip - that's my ole mum ;)
I think when people are scared of sonething they try and "make it go away" in childish ways, including blaming mums! My ils even now question whether my boy has autism (he is at the more severe end!) because he is affectionate and they must have read once that "they aren't".
It is only us parents who dont have the luxury of this kind of denial; we have to look the autism squarely in the face in order to take action.
Ignore,ignore and plough on and through. Good luck!
We haven't got a dx but my dad was pretty quick off the mark at the suggestion of referral...
(The best one was "maybe it is the Italian/Irish mix!" Yes because obviously that mix creates lots of autistic traits dad! )
I think every reply is spot on, I would also like to add that it is also a matter of wanting to sweep it under the carpet to come across as 'perfect' obviously our children are still perfect in our eyes! But the idea that something might mean they are different from their peers is hard for them.
Hopefully he will come round in time. He doesn't spend a lot of time with your DS so he doesn't know him like you do.
Hope you feel better today,
Sorry your Dads first reaction has been hurtful denial. I exspect he is seeing a wonderful much loved grandchild mostly doing what 2 year olds do and will take time to accept the reality. I do agree that it is probably a need to make things better mixed with wanting the best for his child and grandchild. Different I know but when my late dsis became ill and the signs were pointing to cancer I thought of all the other more treatable things it could be, which was probably not very supportive at the time.
Your father may only have knowledge (from his 1950s college days) of profound autism with no early intervention. His much loved grandchild probably seems very different from the out of date 1950s description of autism, and he may not yet be able to see the positives in the early diagnosis. It may take time.
Trucks, if it's any consolation, my mother worked as a TA in a special school for nearly twenty years, and still came out with some of these when DS was dxed.
I think as others have said, grandparents sometimes need time to work these things through in their own heads. It doesn't' t mean that he won't be a fantastic grandfather in the future. For what it's worth, my mother is great with DS, and her SN experience is shining through, but she still fails to see the extent of his problems.
Hope you have a better day today
Wow! You have a full house, there.
Hopefully, he will get over the shock, in time and be able to be more supportive.
My personal favourite (MIL) was
'That ASD diagnosis, it's probably wrong, he seems fine to me'.
This was 5 minutes after her spontaneously noticing that 'DS1 just doesn't seem to understand that other people have their own thoughts' <sigh>
In fairness, she's actually a very 'good' granny to him though. Appreciates his little quirks and accommodates them.
Thanks very much for all the responses. Tbf, dad has come round now after a week with DS and can now see I am not making this up: I think seeing ds running looking over shoulder and sitting throwing head back and forth clinched it. He flies back today and I have real regret that DS lives so far from grandparents and won't be able to have time with them as he grows. Dad now thinks DS will be all right in the end and that we are doing a good job. Which is good really.
I'm doing parent ABA training in May and have next steps intervention planning/post dx meeting in a week so I guess next time dad visits we will be on our new road instead of just guessing what will come next.
Sounds like you are doing everything right. Great that your Dad cansee that. Good luck!
Ds2 (Nt) and very sporty. Why don't you give the same opportunities to DS1 (ASD)? Because team sports are his idea of hell!
My mum makes me laugh! She call every day and wants to know everything about PDA , say she totally understands and gets very upset about what I go through with him,BUT, everyday , she insists that once he's older and understands how difficult he is being he will definitely snap out of it!!!
GRRRRRRR !! I adore her though
Ds 1 has a dx of aspergers. I was told he may have difficulty with fine motor thingsm (shoes, socks, buttons). So in the usual rush for school I fling them on him!
Nan comes out with "8 years old and can't do up buttons", I reply "he has aspergers, and they think he has difficulty with these things", then I get "shhhhh you shouldn't dwell on these things or he'll think he can't do anything, anyway I don't believe it".
And don't let him know he has it!
Just got a sort of preliminary diagnosis today and am considering how to inform grandparents...am getting my bingo card ready...
Hoping it works out ok for you, building. I have read your threads and wish you and your family all the best
Message withdrawn at poster's request.
Thanks Trucks! It has been a busy time, emotionally speaking!
I am resurrecting this thread because I have just found out via visiting mil that dad has written about DS dx of autism in his Christmas newsletter which we weren't sent a copy of.
He didn't ask permission.
He has not been any help or support.
Mil has just mentioned that she received a copy of your Christmas newsletter and that you mentioned our child's confidential autism diagnosis in it.
Please can you send us a copy and let us know how many people this information has been shared with.
Trucks and Mr Trucks
Recipients number dozens, over 100 and include immediate family members we have chosen not to tell (yet, in some cases) and pretty much everyone who knows my family and has been close to us last 50 years.
DH is furious as am I.
I would as livid as you are. Sorry, I don't really know what to suggest, but just wanted to say you're not alone. My mum told all and sundry about ds before he was even diagnosed (obviously being a child development expert herself
not ), without even once talking to me about him. It made me so furious and upset that all these people would have misconceptions about ds and who he was, without even ever having met him. It made me so angry I could barely speak to her, and still haven't quite got over it three years on.
Sorry, that's probably not v helpful, but I do know how you feel.
The only thing you could possibly do (as well as making sure he knows what a thoughtless and appalling thing this was) is get him to put updates in the next round-robin, written by you and full of glowing reports. Also could email eveyrone you know on the list saying you didn't want them to have to find out like that, but now they have, here is a description and pics of the lovely, wonderful ds, so they can understand a bit more about him from the horse's mouth, so to speak.
I would be hopping mad if anyone did that to me. I hate it when people who hardly see my DC tell other people how difficult they are to look after when they have never looked after them. Not forgetting people who tell their friends all about DC's disabilities and get it wrong. One random old lady came up to me on the bus and started talking about her friend's great grandson who had had a cleft lip like my DS4 and it had been so tragic for the whole family but he'd had an operation and he was fine now. Turns out she was one of my granddad's friends and he'd been telling everyone DS4 is cured which he isn't (ongoing feeding issues, extra fluid on his brain, development delay, hypotonia). If you're going to discuss my DS's dx, at least get the details right!
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