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Friday, March 1, 2013

Parenting with Multiple Sclerosis

GREAT TOPIC - thanks Julie

By , About.com GuideFebruary 28, 2013

I am a mom. I also have multiple sclerosis (MS).
When my twins were smaller, I thought that I was in an impossible situation. I felt like I was never doing things as well as I could. I kept feeling like I was disorganized. I always felt like I was behind schedule, that I could get more things done if I was just more efficient. Many of my ideas of age-appropriate stimulation that I had heard so much about from friends were out of my reach physically – I was too tired to take them to baby music classes or story time at the library. I would look at pictures in Pottery Barn Kids catalogs and wonder why my house didn't look like that.
Then I started talking to other moms. I realized that all parents have challenges. Not many of us feel like we are completely on top of things all the time. I imagine most parents of young children look around their houses at times and ask themselves, "What the heck happened? Where is the lovely, coordinated d├ęcor that now seems to be buried in toys and strollers? Why is there so much plastic stuff in my house now?"
I started giving myself a break, trying not to be so hard on myself. I focused on enjoying these little creatures who were changing before my eyes. Sure, some days were excruciating and endless, with me wondering if I would make it until I could get them to sleep.
There were days when I gave up trying to coax anyone to eat peas, but let goldfish crackers and raisins count as a square meal. Some days found everyone in pajamas until 3:00 in the afternoon.
You know what? My girls are seven years old now and we still have occasional days like that. You know what else? It is fine. They are happy and well-adjusted kids. Sure, there are days when I wouldn't want a camera crew to walk through the house, but for the most part, we are doing great.
For any of you who are parents living with MS, I'm going to share a couple of tips that guide me in my day-to-day life with my children.

Be honest with your kids.

When my girls turned four, they started noticing if I was a little draggy or looked tired, which they never hesitated to point out. I remember looking at their little eyebrows bunched together as they asked me what was wrong. The times that I tried to put on a bright grin and convince them that nothing was wrong (even though I felt like I was about to collapse from fatigue or pain or other MS symptoms) didn't always go so well. I think they saw through the lies.
On the other hand, when I told them (in age-appropriate language) that "Mommy's head hurt" or that "I feel sleepy," they often wanted to be part of the solution. I remember tiny hands petting my forehead as I lay on the couch before they turned to a quiet game with each other.

Let your children help you.

Again, they want to be part of the solution if you let them. Kids maximize their environment and will understand that if their parents are feeling better (physically and emotionally), the whole family functions better. That translates in to more fun and less upset.
I take a pretty gentle approach to getting help, which I have found works better than "laying down the law" about chores. I try to make it fun when possible. I chat with my daughter about her day as we sort socks or she empties the dishwasher.
I also make a big deal out of it when one girl brings me a glass of water or does a task voluntarily.

Be patient with your kids and yourself.

We are all trying to figure this out. Try to be patient and figure out why your child is acting a certain way – it could be that he or she is nervous about you not feeling well or concerned that it might be their fault that you have a headache. Be patient with yourself. I lose more keys and fumble much more when I put pressure on myself to do things quickly or perfectly.

Find things that everyone can do together.

Some days, you may not have it in you to go to the park or arrange a playdate. I have lots of days where I cannot do these things. However, I do try to interact with the girls in some way. I get out the markers and ask them to draw different animals for me. I ask them to read to me or to make up a story and tell it to me. We have even had days where I piled the craft materials on the table and had them work on projects while I offered advice from where I lay on the couch. Remember, they really just want to be with you more than anything else.

Pile on the love.

This goes without saying. If you lose your temper because you don’t feel well or you get overwhelmed, pull your children onto your lap and snuggle them. Tell them that you are sorry. Tell them that you love them often.

Bottom Line

I'll be honest. None of these tips work all of the time to keep everyone happy and things quiet and harmonious. However, this is what I have found, through years of trial and error, to give me the best shot in making to the end in one piece and relatively proud of my parenting skills.
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