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    Grandchildren

    I have 3 gorgeous grandson’s age 7,8 and 13 who I adore and admit to spoiling them while I can . While watching Life of Pets with Jacob who is 8 he declared grandma you need surgery to mend your voice …,any recommendations ??

    #2
    Jane, the MNDA have resources for children which you might find helpful in how to approach difficult topics and there is age appropriate information for the children themselves:

    Click here for information aimed at 4-10yo.

    There is an interactive page, also for the 4-10yo age group: click MND Buddies

    For the older child, click here for information and resources aimed at 11-18yo.

    Enjoy your grandchildren 💖💖💖

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi Jane, I too have grandchildren(7) aged 6-20 years.
      As Ellie suggested the MND Association has info for children that might help.
      I have shown my 11 year old grandson my text to speech APP and what I can do with it when my voice gets too difficult to understand.He had a play with it and said Oh thats good and went off to play in the garden.

      The youngest 2 aged 6 and 9 have my daughter preparing the way as things happen.For Example Charlie the 6 year old asked if my legs will get any better and accepted that they won’t.When my through floor lift arrived he couldn’t wait to have a go, same with manual wheelchair and bio bidet loo.( He wanted my daughter to get a washer drier loo for his house)They come out for wheelchair walks with us.
      The 10 year old twins, and 11 and 12 year old grandsons have also been supported by my son/ their dad to be told age appropriate info.I feel sure they understand I am getting “worse” but I can still have watch tv , watch them playing football etc.They like it if I sit out and watch them play while they whizz around our garden on bikes and scooters.we collect them from school sometimes and they come to us for a few hours.
      Of course I have moments of sadness that I won’t be able to converse via speech but I need to concentrate on what I can do with them.
      They all use iPads so are keen to show me what they hope to get for birthdays or Christmas and love it if I ask them to teach me something on iPad.
      I did do audio recordings for the grandchildren before my voice got weaker and a separate video recording for my eldest granddaughter who is 20.She says to me “I will walk the journey with you grandma” and recently did a fundraising walk for MNDA.
      Its not an easy journey knowing our grandchildren may watch us deteriorate as Will family and friends.All I can do is be as honest as I can with the children ,as their questions arise in an age appropriate way and enjoy their company.Enjoy your grandchildren.
      Best Wishes
      Mary x

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        #4
        Guilty secret....I prefer my grandchildren to my children...naughty granny👵🤐
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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          #5
          Originally posted by LindaB View Post
          Guilty secret....I prefer my grandchildren to my children...naughty granny
          Your secret is safe with us 😉😍

          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            Thank you the links have been useful especially for the 13 yr old who I am very close too.
            I have always been a hands on grandma and see them frequently- they loved the stair lift
            The hardest part of MND is I will miss them growing up but am making the most of my time with them.

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              #7
              I have six grandchildren who have no idea I'm their granddad 😉🤗😘😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                I have 6 grandchildren and a great granddaughter. I don’t see them often enough but enjoy them when I do. I love children. I had 4 myself, spent about 5 years as a childminder and a year as a Mentor in a Primary School too. X
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  bromleycross Glad they were helpful. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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