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(85 Posts)
Sielha Sun 05-Aug-18 20:56:07

Have posted before about this when my grandson was 8 months old. He is now 18 months old and showing very definite signs of autism (hand flapping, no language skills, walking on tiptoes). My daughter has today expressed her concerns and is going to seek medical advice this week. I am devastated but know that we must accept it if this is the case. I am worried though that we will not get a formal diagnosis until he is about 3 and everything I read says that the earlier you get help, the better the outcome. To add to this, my husband is in hospital recovering from a serious injury and I can’t share it with him for fear of hindering his recovery. Am sitting in the garden drinking wine and trying to deal with everything. Do most of us grans carry on having problems when we think life should be getting easier?!!!!

Doodle Sun 05-Aug-18 21:05:07

Yup we do. Having said that, people have all sorts of problems not just autistic grandchildren. You never know what life is going to throw at you. However, I have an autistic GS and he is lovely. Life has been hard but he is fun, adorable and I love him to bits. Hard to do but don't fight your battles until you get to them. Having an autistic GC is not the end of the world. Get all the help you can, never give up on him and love him that's the best advice I can give. P.S. you will be amazed how many gransneters have autistic grandchildren.

Doodle Sun 05-Aug-18 21:06:10

Sorry. Hope your DH is on the mend soon.

Bopeep14 Sun 05-Aug-18 21:12:59

I have an autistic grandson and he’s wonderful, it doesn’t define who he is, it’s just a little part of him. Once you know for sure you can learn how to deal with it. I went on a course and it certainly helped. We grans do unfortunately carry on having problems, when life should be easier. I actually feel my life is more problematic now because there are more people in it to cause the problems.

Sielha Sun 05-Aug-18 21:22:39

Thanks for the replies. Just feeling a bit vulnerable and having “ a moment”. I know I’ll get on with it, I always do but it helps to know that you’re not on your own.

gillybob Sun 05-Aug-18 22:04:24

Thinking if you and your family Sielha . Things never seem to get any easier do they ? I know very little about autism but I’m sure getting him seen by the right people early in just be a good thing

gillybob Sun 05-Aug-18 22:09:01

Oops posted too soon . Meant to add that your grandson may be a little bit “different” ( no offence intended) to some other children if his age but I’m sure he will bring you all a huge amount of happiness .

A glass of wine might be just what the doctor ordered and might help you relax a bit . You seem to have a lot on your plate with your poorly DH too. Hope he recovers well x

cornergran Sun 05-Aug-18 22:30:34

You surely do have a lot in your plate sielha. It’s a positive thing that your daughter has realised her son isn’t perhaps developing as expected. There is a lot of advice, information and help out there, although you may need to hunt for it. Sometimes we just need to sit and regroup, no harm in that. Wishing your husband a speedy recovery and you a peaceful night.

MiniMoon Sun 05-Aug-18 22:39:11

Hi Sielha. I too have autistic grandsons. There are three of them. The two eldest have been diagnosed, but the youngest age 5 is just going through the assessment process. They are lovely boys, and all different, with different interests. DGS 2 did not speak until he was 4. He's 8 now and although his speech isn't fluent he can make himself understood. Speech therapy has helped a lot.
There is a lot more help for children with autism now, so don't worry about your little boy, he will become his own person, and you'll love him for it.

Lilypops Sun 05-Aug-18 22:39:21

I saw John Bishop "in conversation with Paddy McGuiness recently , get it on catch up t.v,, Paddy and his wife Christine have autistic 4year old twins, The way he talked about them and the way their lives have had to change was so inspiring , Paddy was in tears at one stage of the interview, but they say they love their children and just accept that the children are demanding, frustrating, but they have read a lot in to the illness and how best to deal with the children when they have a meltdown over something , I admire any parents in this situation , it must be so exhausting,

Nana3 Sun 05-Aug-18 22:52:02

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.

stella1949 Mon 06-Aug-18 00:11:46

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.

Jane10 Mon 06-Aug-18 07:33:50

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!

Sielha Mon 06-Aug-18 07:34:58

Thanks so much everyone, it really has helped x

OldMeg Mon 06-Aug-18 07:39:03

Look at positive role models eg Chris Packham.

Iam64 Mon 06-Aug-18 07:56:13

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.

lemongrove Mon 06-Aug-18 08:46:21

Sielha flowers
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.

Bluegal Mon 06-Aug-18 09:22:12

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.

Nezumi65 Mon 06-Aug-18 09:56:51

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.

ninathenana Mon 06-Aug-18 10:00:07

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.

Brightphoebus Mon 06-Aug-18 10:04:55

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!

annsixty Mon 06-Aug-18 10:13:05

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.

GoldenAge Mon 06-Aug-18 10:23:43

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

Diggingdoris Mon 06-Aug-18 10:29:06

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.

sandwichgeneration Mon 06-Aug-18 10:29:29

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