Dysautonomia Homepage- A guide to living with dysautonomia

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This page will have a copy of our latest  newsletter. We will update the page each month.

April 2004 Membership Newsletter

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As some of you may know, I moderate an online support group for people with dysautonomia. For this newsletter, I asked them the following question :
"What are some of the best ways you have learned to cope with raising kids and your condition? IE:How do you spend quality time with your kids,prepare meals everyday,get kids ready for school, etc" These are some of their answers:
For Quality Time:
We particularly enjoy popping in a
DVD, popping some popcorn and having a wonderful time at our "theatre". 
                    - Valerie
Both of the boys are in gymnastics and we go to the meets as a family and it doesn't matter if I'm passing out all the way in. I'm going!
I play video games with my daughter.  We love the quest ones. It has helped immensely with her hand/eye co-ordination and it forces me to think about where we have to go and how to get there, and a used mind does not deteriorate! I love the fact that she is 10 and still wants to hang out with her sick, old mom and she loves the fact that her friends think her mom is soooo cool!
I have Noah come up on the bed and we play games there. 
Sometimes he just snuggles in bed w/ me for some mom time.
I have a beautiful little 2 year old, Sydney. And the hardest part about raising her with NCS is not being about to keep up. I'm a younger mom and have never had a problem up until a few months ago. The best thing that we have come up with is setting up half her play room for "quiet play time". We have a little tykes picnic bench and soft music and paints and puzzles and even a little puppet theater. So whenever I start getting tired or dizzy, we pull the curtain over and enjoy some quiet play time. It also calms her down before bed and gives me a chance to calm down and still enjoy my 2 year old. Hopefully that can help :-)

For making meals:
Cook when you feel well enough in LARGE
batches and freeze.
I guess I am lucky, because my husband has been very understanding about my condition and takes on a lot of the cooking.
 I've taught Megan and Kevin (my kids) to cook some easy things things. They love to cook.
My daughter Kelly is a natural born cook!!  She could cook a full course meal by 6th grade.   We started off though with small things.  I would just give her directions and she would follow them..  She is enrolled next year in a Culinary Arts College :)  see this illness did produce a positive thing...

For Preparing kids for School:
The boys get themselves ready. They get up at 7:30am, eat, brush their teeth, get dressed, etc. My husband usually takes them to school and picks them up.
On the weekends we would plan their clothes for the week.  There are even shelves now you can buy Monday through Friday.  Everything from socks to underwear were put in their day.  They loved this idea.  They felt so grown up getting themselves ready for school!!

For Household Chores:
My kids help out a lot here at the house. They do the dishes, help with laundry, and when I'm really bad they do sweep and swifter mop.

For Homework Help:
When they started needing help with homework I hired a teenage neighbor to come over a few times a week.  Paid him a couple bucks.  This also gave me a little break in the afternoon.

We will make past editions of the newsletter available for download.

Dysautonomia Homepage created by Tara Dawn Chiusano


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