Disabled grandchild

Thank you to everyone for your thoughtful and loving responses. I agree music is very important and I was actually able to sign my grandson to sleep the other night. This is amazing because I have an awful voice
"It's never the length of life that is important it's the quality" resonates with me because the reason my grandson went into cardiac arrest is because he has restrictive cardiomyopathy which is degenerative so a transplant is normally the treatment. However, they will not consider him for transplant due to his lack of function due to the anoxic brain injury. With that said the prognosis is about 3 years...I have not lost hope and I do believe in miracles, but it makes me want to spend as much time with him as possible. So my next heartbreak is that my daughter, husband and grandson are moving about 1000 miles away from me in June. He got a great job and the state they are going to is able to provide much better and more services for my grandson. Thanks everyone for the validation of my feelings and helping me feel much less alone <3

Huge bunches of to you Darlene, beentheredunit14 and jammieb -I take my hat off to you and all mothers and grandmothers of children with learning or developmental difficulties or serious illness. We can all feel for you and should be grateful for the precious time we have with our DC or DGC.

JammieB and Darlene so sorry to hear the problems you face with your disabled youngsters. My youngest child had cerebral palsy (due to lack of oxygen at birth) As you can imagine we were devastated as were our parents,
and as you say it was so hard for them as well as us as they had the additional worry of wondering if we would be able to accept and cope with the situation. We did, with a lot of support and great guidance from many people. I don't know where you both live but I am up in Scotland and 'Enable' were a great source of advice to us for relevant help in choosing the best aides for our daughter to reach her maximum potential. We sadly only had her until she was 16 but those years were packed full of Love and Laughter and Fun and Music !!!! I cannot overstate the part that music played in her life.
It' s never the length of life that is important it's the quality...
Please be heartened that help is out there, just ask.

What a terrible thing to happen Darlene I've never had anything like this, but I do know what you mean about having the hurt of your grandson and your daughter. I'm sure you will find some spport on here, there will certinly be people ho will liten to you, and the sme goes for JammieB

Sorry for your sadness Dariene what a horrible thing to happen. This is a good place to unload your feelings, and I can only say that perhaps modern science will have something to offer later on, and that someone who understands and can respond with a smile as your grandson does, will bring some brightness to your life - I know, it is just the little things that please at times like this. Take care of yourself, he is still the little boy you love.

I have not thankfully had to go through anything so dreadful and my heart goes out to you and to your DD's family. He will need even more of his precious Nana's love now and I am sure it is all there for him. That is what you can do best for him.

I could not find another forum where this fits so I am sorry if I am in the wrong place. If I am maybe someone can direct me to a more appropriate form.

My grandson is now 7 years old and up until a year ago he was an average 6 year old. He was smart, witty, funny and sometimes mischievious. We had an incredible bond and I was and am Nana. We loved to snuggle and sing together and very often out of no where he would say "Nana.....I love you".

Then the unthinkable happened. He wentI into complete cardiac arrest. We almost lost him. He was intubated at least twice and his small little heart was shocked I dont know how many times. He lived and I will forever be grateful for that. The first few weeks were touch and go but again he lived. However he is left with an anoxic brain injury. I know being a grandparent is different than being a parent and it breaks my heart for my daughter. But I feel a double hit....I hurt for both my daughter and grandson. The pain that I still experience is still so excruciating that even my best friends have a difficult time talking to me about it. But I NEED to talk about him, both who he was and who he is. Thankfully he is happy and understands everything and can smile and laught. But he can not talk or walk and does not have much control of any of his body. I think that is enough of an introduction for now. Is there anyone else experiencing anything similar to this? Who would be willing to share with me. Thanks for reading!

His school may have information on suitable ict tools and programmes. They will have contact with companies that sell them too.

Thank you so much for all your responses, he has no grip in his hands but the school feel that he would be able to benefit from a tablet where he can point at letters. Nelliemoser I totally agree with you but this is to help him in school where he has a dedicated classroom assistant, as he cannot grip he gets very frustrated and loses interest, he was born severely brain damaged and it's wonderful what his school does for him so any assistance we can provide we try to do. I now have some invaluable advice which is wonderful - thanks again

or even "advised" - must remember to look at the predictive text raather than just relying on it!

My granddaugghhter has Down Syndrome and has an iPad mini. Her parents were adbised to get this for her as it's a good aid to learning for children with her disabilities as they learn visually. It has been of real help to her in learning letters and numbers.

If you go on Pinterest there are lists of apps on the education site posted by US infant school teachers. There are even ones with how to use the ipad in school so they must be using them as a teaching aid. I've been collecting stuff for a possibly /probably rainy summer with GCs staying.

Also meant to say, depending on the childs disability i.e. communication problems. They can be a very useful tool.

No nellie I agree there is nothing better than spending time on these activities with children.
DD and I both spend time like this with DGS , but they are a very good extra. And lets face it mummy hasn't always got the time right that minute. DGS only gets to use his when permitted

Will ipads be any better at this than actually playing games with a child to show them?

My granddaughter, who is not disabled, was given a Leapfrog Leappad from the age of about 2 (she is now 13). This was absolutely wonderful for teaching her letters, colours, all about animals, all sorts of things. From what I can gather they have kept up with technology and now have tablets etc. They have a website, Leapfrog.com, where you can go and have a look at whats what and have a demonstration.

ABC Reading Eggs now has an application for iPads called Eggy Words.

Poisson rouge ?

Poussin! rouge

My DGD is not disabled, but at just under 2 yrs can use my I pad with the program's I've downloaded.
Poising rouge's aquarium is a good one to get them used to using a touch pad I found. There are a couple of others called I think 'sound and touch' and sight and touch.
There are a lot that do a free 'lite' version that you can try ANC if helpful download the full version.