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Small children interacting with parent with ALS

nannyny
0 Recommendations

I am nannying for a 7 year old whose father was recently diagnosed with ALS, but his disease has prgressed extremley fast. He was running everyday in Nov. 08 and now he cannot move anything and is permnently on a ventilator. We have gone to visit him in the hospital and it is very hard to get him and his 7 year old daughter to interact. does anyone have any suggestions of games they can play together or good ways to keep connection between them. Oh one key element is that he cannot speak with the ventilator you have to read his lips.

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ALS

3 replies

nancy777

My grandmother had als for 14 years and my mother for 7. I was a child when my granmother had als and my older brother remembers her and how much she used to smile when she saw him. She only could use her one finger and the rest of her body was unable to move. What she did was write letters on her type writer. We still have all the letters and cherish them especially when she would get my mom in trouble :) My mom was very strongly active in us having a relationship with her mom and we were to talk to her and tell her things that were happening in our lives. We talked to her alot but one of the biggest thing was us touching her. We would touch her arms and the look in her eye you could see the love. We would also read to her when we first started to read and she would be so proud and her nurses would tell us that she talked about us and how proud she was of us when we left. I was older when my mom had als and although it was difficult I was able to be with my mom though her care and when she passed away. We would take my mom out for walks in a wheel chair, we would go to places and although she could hardely move she would also mouth words to us. My mom loved to have us just near her and would cry to think of what we had given up for her and that she might pass away and leave us. When she smiled you could hear it from her lips. Als is a horrible disease that you would not wish on anyone but I am thankful to God that I had the mother and grandmother I did for the time I had them and know that i will see them in heaven one day and they will be running to meet me.

nannyny

Thank you for sharing, reading is a great idea. im sorry for the loss of your family to the disease, but it is so great that you remember them and your time with them fondly.

smfarr

Does he have a computer so that he can communicate with his daughter? There are a few very good systems out there that the hospital can help him use to communicate - even if he can only move his eyes. Communication is so very vital. Here is a recent article - plz read Augies comment http://is.gd/3s6oX

There are a few resources out there to help children understand about ALS - http://is.gd/3s6vc

I like the ALS Canada site the best: http://www.als411.ca/

Again, it is so very vital that this father and daughter can communicate in every way possible....

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