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Grandparenting

My fears confirmed.

(76 Posts)
icanhandthemback Sun 26-Aug-18 22:59:54

On other threads I have mentioned my worry that my Grandson might be on the spectrum. I have looked after him for the last couple of years for a couple of days a week and various things have concerned me but his last of speech as he heads for his 3rd Birthday has been the most worrying. He finally had his assessment last week and they confirmed he has autism. Obviously there is a mixture of relief that we know what we are dealing with it (sounds like there is a lot of support being put in place) and grief that he is afflicted with this. However, the hardest part of it was his parents were absolutely unaware that this was even a possibility and were completely shocked. I had said some things about my concerns but they had always been quick to dismiss them so I thought they didn't want to see but talking to my DS, he really hadn't connected the dots and didn't even realise what the assessment was for apart from the speech delay. He has looked back at what things I'd said that he'd dismissed and wondered why I didn't sit him down to tell him in words of one syllable. I feel bad for him but wonder if I had told him straight whether he would have just worried for longer. He also feels quite betrayed and very stupid because everybody he has told (like his siblings) have all said that they had wondered. On the other hand he is relieved that everybody has been so kind. I just feel so helpless at the moment.

Starlady Mon 15-Oct-18 02:53:54

Well so much for my belief that the parents usually have some idea! I guess that's not always the case. I suppose some parents are ignorant about it and some others just don't want to know. I'm glad you voiced some concerns, ican. Imo, that's all you could really have done.

I don't think ds would have listened if you had tried any harder or if anyone else had. Imo, he was just lashing out because he was upset and maybe embarrassed that he didn't listen to what you did tell him. I'm glad he's adjusting. I'm sorry it's taking dil longer, but I'm sure she'll adjust, too, in time.

Of course, you feel bad that gs has this condition. Idk, but I imagine that feeling of helplessness comes from the realization that you can do nothing to change it. And you can't. Neither can the parents. But now that they have a diagnosis, surely, they will get advice on how to handle gs. Since you often take care of him, I'm sure they'll share this information with you. Dil might not feel up to talking with you, right now, but ds can fill you in. Then, as you say, you can "pull together" with them - and, perhaps, not feel so "helpless."

Fennel Thu 11-Oct-18 20:36:31

It wasn't you, PECS.

PECS Thu 11-Oct-18 19:33:15

Agree , sorry to distract.

Fennel Thu 11-Oct-18 19:26:26

ps but perhaps this is a topic for another thread.

Fennel Thu 11-Oct-18 19:25:48

Momof3 that's a very good point. The diagnosis of a physical complaint seems to be more clear cut.
We once had a young woman staying with us who was bipolar. She was refusing to take her meds but that's another story.
I tried to persuade her that bipolar was a chemical imbalance similar to diabetes but she wouldn't accept it.

PECS Thu 11-Oct-18 18:43:42

mom was that to me? Someone with CP or diabetes will have been diagnosed not labelled!

Momof3 Thu 11-Oct-18 18:26:52

Would you say the same about diabetes or cerebral palsy

PECS Thu 11-Oct-18 15:56:46

Fennel perhaps just terminology. For me a label sounds a bit negative and maybe not properly assessed so maybe not helpful.

icanhandthemback Thu 11-Oct-18 15:44:05

Fennel, I suspect there are plenty of others in our family who might have had a diagnosis these days - especially the PDA form!

Fennel Thu 11-Oct-18 15:27:32

PECS - Yes a diagnosis, which usually means a label.
Hoping your grandson gets the help he needs as soon as possible, ican.
My 2nd son has personality problems, which would probably be called Aspergers now. But TG he doesn't have learning problems so made the most of his abilities.

icanhandthemback Thu 11-Oct-18 13:13:45

Thank you PECS. I hope so too.

PECS Thu 11-Oct-18 12:43:37

Sorry to hear that about your son's education. ican Not helpful at all. Hopefully things are better now and your DGS & parents will be better supported to manage his needs.

icanhandthemback Thu 11-Oct-18 12:34:06

I consider he has had a diagnosis which explains some less usual behaviours and some speech delay. If we have to ‘label’ to access the help which will assist him to reach his full potential throughout his education then so be it. Of course it doesn’t necessarily mean he will. His father was professionally diagnosed with executive function disorder, Dyspraxia and EDS. It made not a jot of difference throughout his education. He was still labelled ‘lazy’.

PECS Thu 11-Oct-18 12:20:58

oops!
it needs specialists to make that assessment.

PECS Thu 11-Oct-18 12:20:07

Fennel a label or a diagnosis? Young children who show a developmental delay whether it is speech & language, social & emotional or cognitive or a combination of these need a careful assessment so they are not labelled " naughty" or "lazy" but are properly diagnosed so the correct strategies to help can be put in place.
Some children's behaviour may not be due to anything other than lack of experience, parenting style & expectation etc. but to ascertain this

Fennel Thu 11-Oct-18 11:50:21

Personally I wouldn't use either, and I was a 'professional' some years ago.
The problem is that these days a child has to have a label before he/she qualifies for expensive support and therapy.
It's part of the bureaucracy.

icanhandthemback Thu 11-Oct-18 11:30:57

Sorry, that should have said ‘used’. I suspect that different professionals use different terms.

icanhandthemback Thu 11-Oct-18 11:29:27

DIL17, we all asked about different traits in as gentle way as possible but they were all rejected as ‘he isn’t like that with us’. The Nursery he attends had asked them whether they could involve the SENCO which my son now says should have been a red flag but as his wife was a a fully qualified Nursery Worker he felt that she was more qualified than us. She was not prepared to consider anything and, as she was struggling with her own problems, we didn’t want to add to them. Her refusal to take her child to the Health Visitor disarmed us but that was her right as his mother. When I pointed out the various talks we’d had, my son could see how we’d tried and agreed that it was hard to be blunt without causing considerable upset.
If it had just been my son, I could have been blunt but my DIL would have been less forgiving especially as she’d just lost her own Mum. Sometimes balancing what everybody needs to what everybody wants is a thankless task!
To those who hate the phrase ‘on the spectrum’, it’s much harder for my son to use the word ‘autistic’. Sorry if that offends but it is also the phrase the professionals use.

Fennel Thu 11-Oct-18 11:29:12

"different"?

DIL17 Thu 11-Oct-18 11:09:46

Firstly it's not any easy situation for any family so it's fabulous that you've got a diagnosis so early and especially before the start of school. That will help so much in making sure he settles properly and get's the right help.

I do have to ask though, as a family, had you all talked at very points about your grandchild and what may be the cause? Yous aid your son felt betrayed and stupid as everyone seemed to know? I do think (if that happened) that it's totally inappropriate for you all to comment behind their backs on such a serious matter. I know I'd feel hurt if my family thought there was something "wrong" (not sure how to put it as it isn't wrong) with my child but toned it down when talking to me.

Fennel Thu 11-Oct-18 09:32:52

Nelliemoser I agree 100%. The phrase is meaningless.
Better to describe the actual behaviours etc that cause concern, then get help to work on those. As well as developing strong points.

Nelliemoser Thu 11-Oct-18 08:35:13

I just wish people would stop using the expression " he's on the Spectrum" and such like, it seems to me to be demeaning to that person as an individual.

Momof3 Wed 10-Oct-18 22:53:15

Autism is not not curable maybe over the years strategies can help the person to mask traits until they’re in private but definitely not curable

icanhandthemback Wed 10-Oct-18 17:08:06

Thank you, lemongrove, I rang the NAS a few weeks ago when I was tearing my hair out about their laxity and then I read that if it had been picked up by 18 months old then "it could have been turned around". I felt really guilty that I hadn't said anything outright earlier but the NAS assured me that there is no "cure" and I hadn't done anything wrong. They sent me loads of info which I forwarded to my son but I don't know whether he has read it.
Really this couldn't have happened to a worse family, both parents have a congenital condition which causes fatigue and my son has an "executive functional disorder" which makes it more of a struggle for him to chase things up. Up until he was married he happily accepted whatever help he needed to assist him in his endeavours but this is more of a situation for his wife and him to cope with so I have to be more careful not to step on her toes.

lemongrove Wed 10-Oct-18 16:26:15

The more that you and them read up on the subject the better.
The National Autistic Society is a good starting point.
You will learn about strategies to help him and you cope with life.