Tips From Parents With CFS About Surviving The Preschool Years

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By Mary Robinson, MS Ed
updated on 06/20/2007 at 11:06AM

Article reproduced from The Pediatric Network

Several of our readers requested a column that would offer ideas to parents with CFS who are struggling to raise young children. As I am not in this situation, I turned to some parents I know who have been, and have received some wonderful feedback. I thank my friends for helping me out. May the perspective of these young moms offer some ideas to help you build loving and lasting relationships with your little angels.

The worry that many parents have is how will they be able to have any relationship with their child, when they are so limited in what they can do? "BEING there emotionally for your child is more important than DOING things," one mother reminds us. Following are the ideas that they found helpful:

• Try to find people to help with household duties so you can concentrate on those things only you as a parent can do for your child, such as cuddling, reading a story, playing a simple game, and just listening to your child.

• Hire help if you can afford it: A part time au pair, full time childcare, a housekeeper, whatever you need to ease your load.

• DON'T have any hang-ups about an untidy house. Basic cleanliness and hygiene are important, but otherwise be satisfied with an untidy but child friendly house!

• Older children can help by bathing the younger ones at night and getting them ready for bed. (Don't worry about burdening your children with your illness and be hesitant to let them help out. It is a gift you give to them in learning to be helpful, compassionate people. When you appreciate their help, you give them an opportunity to learn one of life's important lessons, being there for others in need.)

• Several moms said that everyone had their chores. One would have to load the dishwasher, another unload, one carry the laundry down and sort it, another put it into the machine.

• For another unloading the dishwasher was made into a game. Make games out of other household chores also, so children can help you get essential work done.

• "One of the things that we tried to do was have our youngest find ways to help me. She used to carry the tray with my meal upstairs to my bed. When I had to do passive bed exercises, my husband taught her how to lift my arms. She was very good at it and took great pride in doing something that was helping mommy get well."

• If you have family or friends who offer to help out with the kids, the housework or cooking, take them up on it.

• Try to find mothers with young children to help you out on those days when you simply cannot cope. Remember that even though you are dealing with an illness, you, just like any parent of young children, need support with childcare and time to nurture yourself.

• If typing letters is hard, you may try to arrange a correspondence with another parent who also has CFS. "We would send each other cassette tapes. I'd lie in bed and talk to her or I'd lie in bed and play her cassette letter to me. I used to feel that I was having a visit with a friend during the years when I really couldn't go out for a coffee."

• Put a TV/VCR in your bedroom so that you can cuddle up with your wee ones in bed and doze off while they watch movies, cartoons or quality children's shows on tape.

• If you need to rest alone one mom suggests having your kids stay in their room while you sleep in the room next door. While this mom often felt guilty leaving them alone, she knew they were safe. When younger she told them not to answer the phone, but when older, she taught them to answer it and to say, "She can't talk right now. Could I take a message?" Then they wrote down the message to later give to her. They still do this, and are very understanding and accepting of her fatigue.

• Nap when your kids do. Just lying down and resting can be helpful, in your room or on the couch. If your child is awake, make sure the area is safe so that if you fall asleep they can't get into any trouble.

• Consider getting a play pen with special toys in it to put your baby in while you sleep nearby. It can really be a lifesaver if you need that nap, or need to run to the bathroom or the laundry room. If used on a regular basis, (even 10 minutes a day) the child will get used to it, and not resent it

• Try to be emotionally available to your child and if you feel terrible and are unable to be there for your child, explain that you don't feel well and then promise some quality time at a time when you will feel better.

• Try not to dump your emotions and pain on your children, rather just say "I don't feel well today" and leave it at that. Don't say " I don't feel well, I have a headache and my legs ache so much and on and on."

• Be CREATIVE: find ways to do things from your bed or lying down on the floor.

• Invent "gopher" games in which your child "goes for" essential objects without realizing that they are actually helping you.

• Create a play area for your child. For toddlers it may be in the corner of your room, and for older preschoolers you can trust, being alone a room near you may suffice. Wherever it is it may include a craft/activity table where your child can be occupied while you are in bed. Things to consider adding to your table (depending on the age of your child): scraps of material, glue, scissors, objects for collage, assortments of interesting pens, crayons, coloring books, lots of paper, puzzles and small games.

• Spread large pieces of plastic on the floor and let your child make potions in plastic throw away containers. Old food such as old flour, pasta, food coloring, play sand, cereal etc. can all be used to make magic potions. When the children are all done you can just pick up the plastic and discard everything. (I presume this will not work for everyone but it used to be one of the child of this parent's favorite pastimes!)

• Buy a doll house or car garage with miniature (matchbox) cars. Have your family and friends watch garage sales for items such as the kitchen sets, or tool benches. These items can keep toddlers and preschoolers busy for hours imagining they are busy at work in the kitchen or the shop

• Build chair houses with sheets and blankets draped over chairs

• Buy storybooks with tapes and tape players that children can operate by themselves.

• Invest in a miniature trampoline that can be used indoors.

• Put a sandpit outside and let your child play in the sand while you lie on a blanket and watch.

• Play simple card games with your preschooler. Set a timer for 10 minutes and explain that when the timer goes off, you have to stop playing

• Take large pieces paper and build a "snake" in the hallway by placing the papers next to each other in a long line down the hall. Number the pieces and play a game with dice where the number on the dice tells your child which part of the snake's body should be visited and decorated with pens or crayons.

• Draw on windows and mirrors with water-soluble pens.

• Have meals in the freezer. They may have been prepared by others or by yourself. (Consider always doubling your recipes and freezing half in serving size containers.)

• Once a week cut up raw veggies (or have someone else do it) and put them in baggies so that there are always fresh veggies and dip on hand to have with a meal. (Buy finger foods such as baby carrots, string cheese, and grapes that are all ready to eat. Have ready to eat foods in the refrigerator that your children can grab easily when they are hungry. Even preschoolers can get their own food.)

• Sometimes you may just feel too tired or too sick to make a decent meal. This mom made herself realize that cereal is a perfectly good thing for kids to eat (vitamins, milk, etc.), and they could also help themselves! Frozen pizzas, chicken pot pies, and TV dinners were easy and Macaroni and cheese was a favorite too, so all I had to do was microwave vegetables like peas or mixed vegetables. They didn't suffer."

• The kitchen table is a great place to color with preschoolers anytime, but especially while preparing meals. And active babies and toddlers can have fun rampaging through the pots and pans in the kitchen cupboards while you are occupied.

• If someone else is in the house to help out with bedtime have them read a bedtime story in your bed so that at least you can take part. If unable to read to your child, you can still enjoy this cuddling time while someone else reads the story.

• Protect your sleep by creating a "fun circle" in your child's bedroom. Keep some interesting toys aside to be put in this "fun circle" once your child has fallen asleep at night. Explain to your child that when he/she wakes up in the morning he/she should play quietly in the "fun circle" until you have woken up.

• Find a therapist to share your concerns and frustrations with.

• Don't neglect your own friendships or interests if possible

• Nurture and cultivate a sense of humor!

• Have backup plans for help if you can. Having a list of people that you can call to help with driving or running errands may really help to reduce your stress level. If one person is busy it helps to have others you can call

• If you are able to exercise, even just a little bit, an exercise bike is a great thing - and you can do it while watching TV. Short walks can also do wonders to just breathe in the fresh air and clear your head.

• NEVER overdo it. It is far more important to look after your own health so you can be there for your child.

• NEVER feel guilty for being ill, you didn't choose this illness and your children won't be seriously harmed by it unless they pick up on negative attitudes from you. It isn't pleasant to have a sick parent, but it is far more detrimental to have one who feels guilty all the time.

• Never think about the long term future as it tends to make you feel completely helpless and depressed -- think, "one day at a time"

As a parent with CFS you have several choices on how to deal with this illness with your children. One mom, due partly to the lack of a diagnosis, chose to hide it from her family. "To this day my children do not recall that I was ill, and when questioned they say that there has been nothing different about their life because of CFS in our family. I must have done a good job hiding the daily headaches, dizziness, exhaustion and despair. I WOULD NOT recommend "hiding the illness," to other parents in this situation. I attribute my longterm, disabled state at least partly to the fact that I pushed myself too hard and too long in those early years, with almost no support from family and friends."

Another parent worried, as I am sure all parents with CFS do, about the long-term affects their illness may have on their children. "Several years ago my 7 year old daughter made a cassette tape, where she talked for about 20 minutes about what it is like to be the child of a mother with CFS. She had never known a life with a healthy mother. It was so touching, I cried. She talked about how much I had improved. How she used to bring me the trays of food to my bed and how now I was able to come down for the family meal almost all of the time. She talked about how I was able to go on some outings occasionally and how happy she was to get to spend more time with me pushing me around in the wheelchair. She said that she loves her dad and loves to go places with him but how wonderful it was to get to be with me too sometimes and to all go places as a whole family. The tape showed me that she really understood my illness and my limitations and that she seemed to be well adjusted in spite of everything.

The Parent's Corner
Tips From Parents With CFS About Surviving The Preschool Years
by Mary Robinson, MS Ed
http://www.pediatricnetwork.org/parenting/parentscorner/LN00-Parents_with_CFS.htm
(Published in Lyndonville News, January 2000)

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