hard to cope with this latest news of grandchildren

No none of your suggestions are petty. I will offer to pay for a cleaner. Unfortunately, I am no spring chicken mid-seventies and have a damned heart condition that makes me very wary of going far alone or taking stressy risks.I feel bad about that. I think absolutely being a listening ear always there is important. It's such a tough one. Life does throw some massive wobblies and at the end of the day, we have to suck them up. (is that saying?) But I feel better for you all listening and sending me some strength. It's good.
They will find a way and, whatever that is, I will support them. Must say though that the news yesterday that the one GD that I thought unaffected might have it has floored me a bit. She has been the one helping DS with the baby...The awful thing was the eldest was normal or should say typical until she was nearing eight and then she started to regress. She was book mad since a toddler but now at nine can just manage picture books.
The school wanted her tested for autism and they have officially assessed her as autistic. Really we know it is the DM1 but that is so little known or understood and one of its symptoms can be autism, DS and DIL reluctantly accepted that as it is better that she gets special needs support that way than none at all.
And now the middle one might be headed in the same direction as she is complaining that her hands ache etc...it feels a bit like the last straw. But also this weird condition does mean that everyone has different symptoms..so perhaps hers will be more physical than mental. It is nightmare. I'm so glad you haven't all passed by as it is so difficult. I'd love to feel I could post up how things are going and keep it as positive as I can without being unreal. Thanks again XX

Of course post anything anytime, there is always someone here, because this covers the world , there are folk posting in the middle of the night. Not forgetting the insomniacs of course, me being one of them.
There is a lot of support from different organisations which cover the condition. Also chat room things where people can just air their worries and problems, as well as the joys. There will be joys. All good wishes x

You come across as a lovely caring person grannygranby
I think as others have said if you have the means a present of a cleaner or some kind of help and maybe a lovely relaxing massage for your daughter in law would be calming and acceptable and don’t be afraid to ask your son what you can do to help from a distance
Do you have support is there a ‘grandy’ to give you some kind time
I understand about you not going on MD support groups that your daughter in law is already on that wouldn’t be a good idea but I wondered if there may be a support group For family members
Keep popping on here I m sure you ll get lots of support

Just can't find the words grannygranby hugs

Is there any way perhaps that you could go and stay in a holiday cottage nearby, not with them, from time to time, to help take some of the strain with one or other child?

Wishing you and your family all the best you sound like a loving caring gran

So very sad reading this post and sending hugs to you as I can offer no advice. Others with better knowledge will. There but for the grace of God go so many of us. ??

I'd hazard a guess that your daughter-in-law's father is in a state of shock and denial at being diagnosed as the source of the illness, and not (yet) up to offering much support. That could explain the vague response from your son when you ask.
One of my friends had a son who was diagnosed with MD at the age of five. My friend was the carrier. So hard to come to terms with.

I'd say read up on any help and support that's available for them, financial and practical, and ask sooner rather than soldiering on. Something you could help with. You really do have to ask for the help you need, don't wait for it to be offered.
They should qualify for some home-care help and adaptations to the home, some of these take time to put in place so another reason to think ahead.
Our local schools put in ramps and a lift to accommodate my friend's son's wheelchair. With support he stayed in mainstream education with his friends, and was a member of the local scout troop.

I agree that online forums and Facebook groups will be a great resource for the family. It's like a club nobody wanted to join but the support and advice from families in the same circumstances will be priceless.
My niece and her husband have a son with spina bifida and they get so much support from other parents.

Thoughts and prayers for you all grannygranby xx

Hello GrannyGranby. What a lovely gran you are, sad for your family and wanting to help. I went to school with a friend who had MD. He went on to uni, and employment, was a table tennis whiz; always smiling. We only discussed his condition once. He wanted to pack in as much as possible, be treated like anyone else apart from the odd bit of help up and down kerbs when he eventually used his wheelchair all the time. He said his parents had created a bubble of positivity around him and I think that is what your family want to do within what is possible. Therefore I’d support positivity but not too much “masking” so that your DIL can let go sometimes.
Others will have more ideas but one family I knew who had one child in a different but similar situation accepted a lot of help from fellow church goers to be able to go to different activities to best suit each child as well as companionship/support on full family outings.
As well as a cleaner, what about a gardener if possible, even if your son is earning well enough so that the can afford as many positive outings as possible and spend family time rather than grass cutting and tidying. So many trips out will be medical appointments and a huge physical and mental effort.
Going into better weather, things like a safe garden, a playhouse and suitable play equipment would be a bonus.

You are right about not all conversation being about difficulties and when you FaceTime, talk to the children about their friends, toys, outings as you have always done.

Take care of yourself too so that you can offer emotional support with energy and flop afterwards.

Others will come along with help and you can keep this thread going by commenting every couple of days to bump it. Even just to tell us you’ve been for a walk, coffee or what you are watching on tv. I will look in to find out how you are and perhaps some suggestions once I have chatted to a friend who has been on this path. ?☕️

grannygranby I am so sorry to read your post. Please continue to post here as there will be GNetters who can help with practical suggestions and others, like me, who want to send you a huge hug and support for everything you are facing just now. ?

I'm coming back to make a suggestion, although of course you know best how to handle it. But it might be helpful to say "I wish I was there to help, and as I can't be, please let me do (this) from afar.

Please always feel you can post on here with anything you need to share.

Nannarose. I’m going to memorise that sentence. Lovely wording.

Grannygranby I have no experience of this condition but I couldn’t just pass by.

I think the suggestions of paying for help in one way or another is good. Maybe you could also sometimes be the ‘fun granny’ and send things such as small games or toys, post cards if you travel anywhere, things totally unconnected with MD, so they can also experience life as most other children do. Flowers for your DIL, just because, or a hamper of goodies to share. If they don’t already have it, a subscription to Netflix or similar might be enjoyable for everyone, and not expensive.

Thinking of you and wishing your wee family well. Xx

Lovely posts on here. I too wish your wee family well.
Unconciously you've been pinning your hopes on that one granddaughter being non-disabled, but I'm disabled, since birth. Its just different. That's not to minimize the consequent extra heartaches and the extra work that your son and D-i-l will have to cope with. If it's helpful, think like this: when Rose (on strictly) was born, I'm sure her gran's friends said to her gran what dreadful news. But look what she's achieved & what a happy woman she is.Your dear grandaughter who's just been diagnosed might not regress like her elder sister - that's not in the nature of the disease for every child, and your elder grandaughter may well have autism as well as MD1 - it seems more common in children with other conditions.She will have challenges, but everyone is different and she might just show the world what someone with MD1 can really achieve. It might not happen this way, but it could - don't lose your positivity at this point although I know its being sorely tried. It must make it worse not being able to see them regularly and see them enjoying the things that they enjoy, and being their own personality no matter in how small ways. There are some brilliant suggestions for practical help on here, & wish you all well in such a challenging situation.

Grannygranby I can't add anything just couldn't ignore your post ? for you hope what others have said helped .

Hi
I used to work with children with all kinds of special needs. You sound like just the sort of granny who will offer positive support and love all the way. Birthdays and Christmas might give you an opportunity to give a gift that is accessible...
Some of the things children I knew benefitted from included I pads with easy to access apps for fun, a rise and fall table so that they could sit at the table even if they were in a wheelchair. It sounds like talking books might be a great way for your grandchildren to access stories. I thought the Netflix idea was an excellent one! Are they I.T. users? My DDs family all use Alexa to find things for them on the internet.

Do keep posting. I’ll look out for your news.

Hello All I've just caught up with your welcome messages. I did contribute to two of those Amazon tablets last year at parents request. packed with loads of apps and with very good parental controls. They love them. For this xmas DIL asked me if I could buy 2 PS4 controllers so they can paly with my son on his PS4. (game thing) ...in fact its his present..the girls have got two Lottie Dolls (one is 'reading Lottie'..I think they are great. no make up no high heels based on real children...I just hope they like them as much as I do!
Have a happy Christmas everyone XXX

Sorry to hear about all the problems.

If they’re not already doing it, they should be claiming DLA for the children. It will greatly help with the finances, and if the mobility element is paid at the enhanced rate, they could, if they wished, lease a Motability car.

www.gov.uk/disability-living-allowance-children/how-to-claim

www.turn2us.org.uk/Benefit-guides/Disability-Living-Allowance-children/What-is-Disability-Living-Allowance

You need help here from those experienced with muscular dystrophy and myotonic dystrophy in particular. A diagnosis of md is a huge and devastating shock and you run a whole gamut of emotions plus all sorts of practicalities that need dealing with. Please contact:-

Myotonic Dystrophy Support Group
Helpline 0808 169 1960
[email protected]

They will help and support you and all the family.

Well they are coming over this afternoon. The bad news is that I have two lovely dogs who are my rocks..Bess a springerdoodle - 11 and Ivy a schnoodle nearly six. The latter gets really anxious if she is separated from meand she knows where I am. I mean bonkers. Usually my daughter has them when they come over because although they are very well behaved and lovely my DIL is not dog inclusive. BUT this time my daughter is coming over as well...which is important as she needs to see the kids her neices. So I am now going to take the dogs out in the mud...because that's what its like today I will come back shower them then wash all the floors as they are constantly dirty . And take it from there. I might lock them in the cellar Ivy will cry...pretend I didn't know dogs were verboten never actually said...but you know the signs..this mean the girls are frightened a bit too..and if they aren't I can tell DIL thinks I'm being manipulative ...as she thinks it is all I care about. I might see if my daughter will let me put them in her land rover ...she has already said no..but she might relent. The extra stressful factor is my son said he cant get the disabled chair in the car so GD3 will have to lie down on floor or sofa...you can see why I cant risk dogs! Cos they are a bit over friendly and licky and then there will be uproar. So lets take them for a walk....back later wish me luck

It will be lovely to see your DS and his family but I can't help but think it will be stressful all round, dogs included, for them to be put in the cellar, or your DDs car for the duration - they will surely make a lot of whining/barking sounds.

I know your DD wants to see her nieces but can you not suggest she has the dogs today, and see the family another time.

Grannygranby, I can only offer you great big hugs and say, please feel free to offload on here. Lots of our kind ladies have given you helpful suggestions. Thinking of you and your family.

Grannygranby my heart goes out to you. You are clearly a very caring, sensitive mum MIL and DG and I'm sure all the family love you loads. There have been many helpful supportive posts in response to you and I have nothing to add, it's all been said. But do share your load here. That's what we are here for. Take care of yourself too. Big hugs

I'm sure she doesn't think you are manipulative, she is most probably overwhelmed with what is happening and you might get some of the brunt of it because you are the closest to them (along with the other grandparents) I would say just be there in a non judgemental capacity. They'll get their in their own time and in their own way. You say she is engaged with online support groups so this might be enough and in my experience these groups do suggest support to others, either emotional or in the way of disability benefits. I hope you don't mind me saying this but men often find it difficult to deal with the emotional side and foster a more practical role, so try not to worry about your son too much either x

Please look after yourself though. Of course it is upsetting for the extended family too, so you need to deal with your own emotions in your own way also. I'm sure your GP would support a referral to the wellbeing service if you needed to talk about this with a trained a counsellor

They will get there in their own time and way