Huntington Disease Lighthouse Families

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Grandparenting with HD

Posted by dustyblues 
Grandparenting with HD
December 04, 2011 12:27PM
When grandchildren were coming along both the neuro and the family doctor had advice. I was likely to fall, therefore should not carry the baby. I always wanted a nice new crib through 4 babies because I had a horrible old ugly crib that someone was throwing out. I painted it with varathane and put new teething rails which you could buy then and a completly new mattress. It had too wide slats and I made pads to keep the heads out. The kids all used the crib as their first car which I could hear downstairs during their naps. So when the first grandchild was coming I bought a beautiful new crib for him. Jonathan never went to bed thus didn't use the crib to sleep but it was in his room. I babysat at my daughter's when she had the twins. It is necessary for someone to leave a path for me or I cannot walk, and I tripped in J.room, and fell on my beautiful crib, and it broke for ever. I have to say that my ugly old crib would never have broken.

Grandparents have been through it all and it is tough to teach the new parents when you have done the same thing many times. I was taught to swaddle the baby with a receiving blanket at the hospital. When J was born they weren't swaddling any more so everyone did not know how to swaddle and pick up a newborn safely, so I went around the hospital and showed them swaddling.

Another issue was bedtime. I hate whining and my kids went to bed when whining started as it indicates the end of the child's learning time and a need for sleep. I had Dr. Spock's excellent book which said bedtime came everynight and was not a reason for fighting. When the grandchildren indicated fatigue by whining their parents spent another 4 hours dandling them in any position, they never went to bed spending more time in cars seats than the crib.

When I lived in the country it took 45 minutes for the fire police or ambullance to get there so my children had a childproof home to prevent accidents. The other grandmother left dangerous stuff out and smacked them when they touched it and this is the safety set up except the kids are not smacked. I used to put things up very high while my grandchildren climb 6 foot book cases and get what they want. Saftey was an issue with my husbands parents becuase all the drugs were everywhere. My first action upon arriving at the cottage was to remove all the drugs then the children were allowed in.

WE go swimming any fridays and I have done most of my grandparenting in the swimming pool where they cannot be hurt. UI have not been well enough to go swimming for about a year and I miss it.

Ross falls alseep but he can drive. I am far more vigilant then he is, so we babysit sas a team and the grandkids know we love them. I have the grandkids here very often, we do art, music,watnc movies and learn to cook they have a double bed matress on the floor in my 2nd bedroom. I take anyone to church next door if they want to go and Ross lloks after the ones that don't want to go to church.

I know well how hard it is to have a mil from hell as I had one. She refused to admit that the deaf child could not hear which meant she was dangerous around the kid and he was never left with her for 2 seconds.

Most of us who had kids end up with grandkids and HD rears its ugly head at that time.
Re: Grandparenting with HD
December 04, 2011 07:48PM
Dusty your the best.

green tea smiley
thumbs up
Fish smiley
Good post
Re: Grandparenting with HD
December 07, 2011 02:08AM
Dusty, i think that this is one of the most insightful posts i have ever read. A post, from someone who has had hd for a long time now, and does hd good. To write something so well, about how you grandparent with hd, the precautions and rules that you go by, is a worthy read for anyone to read, seriously, because you know i'm a grandma with hd too, and i think this is worth others knowing. Seriously, i think this would make a wonderful front page article on the website, and maybe Steve and Marsha might like to do that.
Re: Grandparenting with HD
December 07, 2011 11:01AM
Dusty,
You ROCK!

smiling smiley Carla
Re: Grandparenting with HD
December 07, 2011 12:27PM
I hoped you all will add your thoughts. another thought about training the grandchildren out of crying. Deaf kkids talk though their noses which you stop by holding the nose. All kids whine to drive their parents up the wall. I put Reid in his room as he was whining away. Every time he whined I kept the door shut, and the moment he spoke without a whine I whipped open the door and said good boy. This went on for 45 minutes.

The grandkids cried a lot around their parents, so much that were wasting valuable awake time. One day I put the twins in front of my bedroom, opened the door and asked if they wanted to go to bed. I said if you are tired youcan go to bed in our room. They said they were n't tired. So iasked if some thing was hurting them. they said no. So Isaid well the rules here are crying people go to my room. They put smiles on their facesand the kids don't cry or whine as much when they are here.
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