Grandparents in denial

[SixFeetUnder]

Hi,

I posted on here for advise at the end of last year after an ed psych meeting at the school where she suggested both my sons showed signs of dyspraxia with possible underlying ADHD and I may want to see GP for a referral to paed.

FF to now and last week I had my first paed app for both boys (5 & 3). My eldest has shown massive signs of improvement in the last few months and basically paed isn't too concerned, he has hypermobile joints (they both do) and speech and language delay but again they already have SALT so no huge shocks there. So referral to physio and hearing tests but no major concerns.

The paed does have concerns about my youngest son though and said he would like to do more tests as he shows signs of autism. I am struggling with this, only saw paed last Monday and am trying to get my head round things, not because I disagree but because I know he might be right. He is gathering reports and wants to do blood work on him (anyone have any idea what he might be looking for?). Also physio for hypermobile joints, hearing and he wanted his eyes checked which has been done and he needs glasses.

Sorry for the huge essay, I just need to get this out I think, I've had the worst week ever, well done if you've got this far!

We have shared the info the paed gave us with close family members and tried to answer their questions, now PIL see the boys for a couple of hours, one evening a week. Last week they didn't even know what autism was and yet on Sunday when we visited for mother's day she announced that she 'doesn't think there's anything wrong with DS2'. I calmly said that I never said there was anything wrong with him, that we thought he was showing signs of ASD. She then chips in that FIL doesn't think do either. I started trying to explain why we think this but I started to feel like I was protesting too much, almost like I'm wishing it on him. :(

I'm really furious with, for their lack of support and I'm so sad and worried for my son. What exactly are they basing their opinions on? Do they think he has no issues? Or do they think there is a different reason (ie. Are they trying to blame me for being a bad parent?) Aaargh!!! Sorry for ranting, I'm so mad at them, I just need some support so I know I'm doing the right thing.

Any advice you could give me on where I go from here will be greatly appreciated.

So sorry you're having to go through this, Op. I remember it well.

I totally fell out with one friend who bombarded me with questions and debates all trying to prove that she was right, adn DS didn't have ASD (he was 4 at the time we went through Dx). My mum has only just accepted that the Dx is right, but she still makes comments like 'he did ...today. He wouldn't have done that a year ago. See, he's getting better!'.

I seethe on a regular basis, but have now stopped trying to change minds. I did try giving my mum some books and articles to read, but she didn't like them (ironically, the only one she read cover to cover was given by a friend of hers, and when I read it I hated it- one of those American Mom cures her child type books).

The bloodtest, by the way, is to make sure the symptoms aren't caused by Fragile X syndrome, which can look like ASD. They do the test to rule it out.

Hope you're able to take some time out for yourself. This is a difficult time.

Sorry, I meant to say, I think the comments are because they are trying to make you feel better. They are trying to allay your fears and worries. They don't realise that it causes you more stress to have to explain why you think the Paed is right, and sometimes it is helpful to have someone just sit down and say yes, you're right, something is different here, but we will help you get through it.

Sometimes I find it helpful to just say 'Well, let's wait and see what the doctor says shall we?' and not talk about it any more.

Thank you so much for replying so quickly and for the info about the blood test. He may have said that but I stupidly went to the app on my own (H def coming to next one) and the boys were hyper and I was trying to control them and listen, not the best environment!

Thanks for your kind words, feels so good just to hear from someone who understands how this feels, someone on another thread described it like a grieving process and that's exactly how I feel.

If I have to listen to one more family member say 'but he's intelligent' I think I might scream :(

My mother in law was still saying ds didn't have ASD when we had a confirmed diagnosis, statement and a place in special school! She understands a bit more now but still seems to think that once his speech improves everything will be fine!!!!
Thankfully not everyone is like this, but at the beginning it is very frustrating to have people try to be too reasurring with comments like "all children do that" "x didn't talk till he was 4" etc etc. They think they are being nice and trying to help but it made me feel like they weren't listening.

It takes time for friends and family to understand - especially when they don't see your child all the time or at their worst!! It's easy to mis the cues if you only see a child a few hours when they appear typical and don't see all the difficulties.

Your wonderful little boy is still your wonderful little boy - if he has ASD that is part of who he is.

Use this board for support - it really helps!!!

I think the reason other family members can be in denial is because they can afford the luxury to.

You on the other hand have to go with the facts and then get into action.

To them, the 'quality' of their ofspring is being challenged and they are either looking for an alternative explanation or denying it. To you, the cause is irrelevant, it is the help and future that you need to focus on.

Your roles are very different, and the consequences of your actions are very different. Wouldn't it be lovely to be in denial like them?

SixFeetUnder We hear that from MIL as well ("but he's so clever, he can read so well, etc etc), however, for her it is clearly bafflement as opposed to outright denial. She's slowly coming around now. I think for some it just takes time (after all, she's not around DS2 as often as we are obviously), but for others they will doggedly deny it regardless.

I think you'll just need to go with whatever causes you the least amount of stress. Deflecting it, ignoring it... whatever works for you until they either come around or you reach the point where you bash them over the head (although not recommended, no matter HOW tempting it may be! ).

All we can really do is get support where it's offered among family and friends, and ignore any negative things until we're more comfortable dealing with it.

We had this from my parents too (DS2 has Asperger's). All the usual "he's just a naughty boy", "you were just like that at his age" etc etc. They see him once in a blue moon so don't know what it's like having to deal with it on a daily basis. I always get the feeling BIL is trying to analyse or even "cure" him when they visit, he has lengthy discussions with DS2 then announces that there's nothing much wrong with him. grrr!! I wonder if this might help? NAS info for grandparents

Thank you for that link, I think I'll show that to them, also to my granny who spends a lot of time with the boys but who came to me said she didn't know what this proposed dx meant but she wanted to learn so she could support DS2 in the best way possible. So grateful to her for saying just what I needed to hear

Thanks for the replies, I would love to be in denial but as you say I am trying to figure out the best thing for my son and how to go about that.

I know that no-one is trying to be rude and are trying to make me feel better, I guess I'm just feeling very sensitive atm, will need to grow a thicker skin!

Just picked up DS glasses today which he really doesn't want to keep on so I can see a struggle ahead with them, thanks again for taking the time to reply.

Glad to hear your granny is more understanding . If you have a look on the National Autistic Society website, they do lots of leaflets like "what is autism?" etc, many of them are free. Maybe you could get her some of those too

I think PIL try so hard to allay your fears and try to make you feel better. They just want you to feel that your children don't have any real problems even if there is a diagnosis of ADHD. MY mum still says you can't see anything wrong with dd but she says it with the best intentions and with knowledge that the other children she knows are far more severe. I always explain that it comes in so many different forms and that no two diagnosis of ASD are the same and they present themselves in different way.

You will have to educate the family on the subject as they will have their own preconceived ideas. Good luck, it will be a long process and hopefully they will be supportive. It's going to be their loss of the grandchildren they dreamed of as well as yours, you will need them so please don't alienate them.

sixfeetunder it's funny isn't it how friends and family can make us feel.

My parents said on Monday - DS did this, that, the other all by himself, isn't he clever sort of thing.

However, a good friend who came on holiday with us recently said that she could now see the difficulties he had and gave me a couple of examples she had seen herself.

Out of the two I was most impressed with my friend. Why? I don't know. I think it reassures me in an odd sort of way. DS appears to lots of friends and family as NT. I often wonder whether they think I am a neurotic mother.