Autism

sandwich
Thank you so much for posting that poem. It's such a wonderful analogy, it brought a tear to my eye.

Sielha, if no-one has mentioned this upthread, you might like to watch BBC 'The A word':

www.bbc.co.uk/programmes/b0759b0c

SANDWICHGENERATION (I don't k ow how to get the bold letters...)
Many parents of sp needs children HATE the Holland story. When you're dealing with some tough stuff it's so sweet and twee.
Our son died in his sleep at 18. (Sudden death in epilepsy). He had a rare chromo disorder. One of worst affected. Those on more able spectrum have autism. Its often part of a 'package'.
I don't mean to sound horrible about the Holland story but within our parents group we had pet hates, this being one, plus 'God knew you'd be good parents for him', lots more God involved, often with sad creepy voice.
OP you sound like a lovely Granny. One day at a time

I understand. I was in shock for months after I saw my first grandaughter showing the traits. entranced by Spinning, only being calmed by physically being tossed and hugged by father, ignoring name, no eye contact, mute it came out of the blue. She is now 6. Is lovely but my problem is that neither of her parents will acknowledge her condition. They say she is shy, etc etc. I kind of know what they are saying not wanting labels and luckily she has a younger sister who is neurotypical and they adore each other. But we can't talk about it. So you are not in this position, there are lots of books and support and as someone else said - Chris Packham. And you can help each other. I think other ways of seeing and understanding are fascinating indeed. Feel your way.

ps and thanks from me too, sandwich generation.
One of ours was diagnosed as ........ various quite serious things. As an adult.
But he has made the most of his other abilities, is married and has a lovely (adopted) family. TG.

sandwichgeneration That is such thought provoking piece of writing and so true. It is applicable to all the different life experiences we face. Thank you.

To those of you worried about lack of language - there was another thread recently about that. It was mentioned that boys are slower than girls to develop language, and this goes on for some years. Affecting reading ability too.
Their brains seem to be wired differently. I notice everyone on here mentions boys, not girls.
Ask for advice by all means, but try to be patient. Children sense adult anxiety. Sometimes young children have a sudden spurt in one area of development.

What a lovely way to describe it, sandwichgeneration. Thank you.

Sending you warm thoughts & wishes Sielha. I too am in the same position with my GS who is older, 2 1/2 now. I am a retired primary school teacher so have had experience on pupils on the AS in my class. Ive had my worries about DGS for about 12 mths now, mainly driven by his lack of language, hardly any words by this age sounds alarm bells. He is otherwise a happy little chappy, points to objects, understands everything & is a delight. Parents seem to be in denial so i dare’nt raise it myself, just hope the nursery pick it up. Keep smiling, as all the other posts say it’s a steep learning curve but not the end of the world. Keep us posted on the outcome.

@Sielha Your grandson sounds exactly as mine did at the same age. My daughter got the health visitor round to see him and she realised straight away that he was autistic. My daughter had a diagnosis for him by two and a half. He is now thirteen. He couldn’t cope in mainstream school and moved to a special school at the beginning of year one. He learned to speak within a month of being there. His speech will never be fluent, but it’s good enough. He is a strange mixture of being age appropriate and having the mental age of about four. His twin siblings who are six are more advanced than him, yet he makes films, edits them, does voice-overs and records his own composition music. He prefers his own company and even on his birthday opened his presents and retired to his room! You grandson will have his own skill set and some difficulties, but you have to go with the flow and adapt to what he can cope with. Good luck and don’t forget that disability living allowance and carer’s allowance is available once he is diagnosed and they have helped my daughter immensely to be able to cope financially.

This was written for mothers, but can equally be relevant for grandparents:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I have two autistic GS's and they are wonderful boys. They have their quirks and sometimes their behaviour is challenging, but show me a child who doesn't have the occasional meltdown. It's important once the assessment is done not to look upon it as a label. There is lots of help available, and try to learn as much as you can, because then you will be able to cope better. We don't use the A word, and even the boys tell me there are other 'Special' children in their class.

Push, push for all the help you can get - sure autism is not the norm but these days it’s much more understood and your grandson will show some talent you never imagined - hope your hubby gets better

It certainly shouldn't be thought of as an illness and yes, there is so much more help now, but life can still be difficult and Some of these posts, very well meaning, gloss this over.
The spectrum is so wide with so many differing traits that no one picture is replicated.
Of course we all love our GC , mine is now 9 and only diagnosed recently but it doesn't take away the worry and the hurt we have all encountered.

Sielha, I worked for many years as an early intervention specialist with under fives with autism, and so much can be done to kick start and enhance communication. Find out if there is a Portage service in your grandson's area as they can work with the family at home even before there is a formal diagnosis. There is also a terrific new book called Autism - How To Raise a Happy Autistic Child by Jessie Hewitson which will tell you everything you need to know at this stage and how to face the future with courage. Good luck!

When my now 27 y.o. son was diagnosed a few years ago my tears were of relief, it explained so much. He said it was a relief to him too. He'd always been so different to his sister but we were totaly ignorant of ASD traits. It was one of DD's friends who himself is on the spectrum, and is a highly qualified engineer who suggested DS was autistic.
Your DGC is still very young and I'm sure will benifit from preschool diagnosis. Depending on how it affects him, he can still achieve great things.
I was going to say, it should never be thought of an illness but Jane beat me too it.

Just support your daughter - particularly if you can continue to have your GS.

My son is now an adult with severe autism. My parents were very supportive and would frequently look after him until they could no longer manage (when he was about 16 - no-one could really cope by then). Accessing childcare was impossible so having them hands on really helped.

I don’t know if people are just more aware of autism these days or there is a rise in it!

There are, of course, lots of differing branches to autism and from severe to high functioning.

I have a grandson a stepson both with types of autism. Stepson is high functioning but went to a special school. GS (7) has not got an official diagnosis yet but has undergone so many tests. He has got the experts puzzled tbh but we keep pushing for a diagnosis and help as there ARE problems. Thing is unless they are officially diagnosed it is hard to get appropriate help.

We have just been advised,although only interim, GS will get 1:1 next year which is definitely what he needs but the fight is far from over.

Apart from that GS is an absolute joy as is stepson. They may never be academically brilliant but they are both kind and gentle and enjoy their lives in their own ways.

Sielha
A worrying time for you.Hope that your husband recovers well, and you are right not to tell him anything that will upset him.
We had this scenario when our grandson was tiny, we all felt there was something wrong.He had a diagnosis at almost three years old, they don’t like doing this too early for various reasons.Having a diagnosis helps, both in understanding autism and in accessing practical help.
Because autism is such a broad spectrum anyone you talk to will have different stories.
All you can all do is to be accepting of the diagnosis when it
comes, and not fight it.Yes, tears will be shed and you will all have to pull together as a family to deal with it.
Fortunately there is a lot of reading material out there to help you all understand the condition ( as Jane10 says, it isn’t an illness) however it can make life very hard for the boy himself and the family.The more you read the better, but you won’t know how he will be exactly until he is older,
As no two children are the same, no two autistic children are the same.

It's good that your daughter is looking for medical assessment. So much more is known about the various types of autism than was the case even ten years ago. One of my grandchildren wasn't diagnosed till age 8 by which time he'd been led to understand he was 'disruptive' (his word) at school. Once the diagnosis arrived, his behaviour was managed so much more constructively and he achieved well academically. On reflection, we should all have realised by age 3 that his some of his behaviour traits indicated autism.
There is more support and knowledge and a diagnosis is helpful. The most important thing of course, is he's your grandchild, a much loved child within his family.

Look at positive role models eg Chris Packham.

Thanks so much everyone, it really has helped x

On no account look on autism as an illness. Its not. It's a different brain configuration which can affect social communication and interaction. It can also predispose a person to specific interests and skills. Your DGS should not be defined by autism. He is and will be his own person and this will be contributed to by all his other genetic components and life experience. Depending on his cognitive ability he could do very well indeed in life. The future for him and you is interesting and fascinating. He's still himself irrespective of diagnosis or recognition (which I think is a more useful term).
I used to be an adult diagnostician. Our average age of referral was 38 and the the oldest referred was 84. There's a lot of it about!

My stepson is autistic - he wasn't diagnosed until he was 7 and got very little help ( he is 36 now). Things are much better now, thank heavens. The fact that your GS is only 18 months means that he'll get help very early - even at 3 it's wonderful what can be achieved. I know it's hard to cope when you first find out, but you'll be fine and he will too. Enjoy your wine and best wishes.

Such good posts on here for you Sielha.
When my grandson was one I could tell there were problems, he was referred to a consultant and his condition was recognised. We had wonderful support from the nhs and our local education authority. I hope to reassure you that your family will get help and I hope sharing on gransnet has helped too.