For Those With Severe Pots, What Type Of Activities Do You Do With Your Kids To Keep Them Busy?

[Tammy]

As a mom with a 4 year old daughter, I run out of ideas of things we can do together that I'm able to do. So I'm looking for ideas from those who are also a parent of young kids and who are mostly recliner bound/bed ridden. Since I'm unable to read aloud do to shortness of breath, reading books is out of the questions. However I SPY books have been useful because I don't have to read more than just the items we are looking for on each page. I allow her to watch some disney movies or I Spy dvd's that she likes, but she's very active and most don't hold her attention very long. I have her bring her toys to my bed and we play with her dolls, littlest pet shop animals, etc. and that works fairly well, but again, she doesn't play with anything for very long and I end up laying with a bunch of toys on top and all around me. We have a mini lap top for her online Preschool program that she uses next to me in bed and I work with her as she is willing to, but when she gets frustrated and finds some of the learning to difficult she quits. If you have any other activities that seem to work well, please let me know

Blessings,

Tammy

[tinkerbella]

I was a preschool director along with many other things at one time. I was a juggler of many jobs. I believe I had this forever and had little ones all close in age. My dinning room table was always an ongoing art table with age apporiate supplies, hence I have 3 very talented adult artist now. Here are some thoughts for you. Take a plastic carrier with a handel and put in it glue sticks, washable magic markers, playdough, paper plates, kids sissors,rushes the foam ones for gluing, paint, brushes, tissue paper white glue, old magazines, baggie of pasta, foam shapes, pom pom balls, gagorade bottle tops, anything you would throw away ( stuff from the dollar store or craft store ) crayola makes a line of non messy stuff now and fill up your carrier.

Take a plastic table cloth lay it on the floor and lay down and start making collages on paper plates. tissue paper with glue over them dry clear and look great when dry~ Tell your child they are an artist and you be one also. You'll feel great too! get chalk wet it and draw on colored paper, paint on paper and press it together on aanother piece of paper and watch the wonder on his or her face when you pull off the other pice of paper. Hang up all this art work. make a scrap book . Play relaxing music at this special time and make it fun. finger paint, foot paint, face paint and buy the good set that comes with the book and make that a weekly special treat.

Pick out favorite things in magazines and use the fancy shaped sissors to cut them out for another collage, popsicles sticks, paper plates can turn into bunnies, angels, cookie cutters can be dipped in fabric paint and put on an old t shirt. Have fun and learn at the same time. Have baby wipes near by or a wash cloth in a baggie.

Take your little on and in a high chair put shave cream down and let them play with it with there hands for sensory play. Remind, none in the mouth.

Take little care and pretend your driving in a snow storm...

Trace your little ones hand and feet and turn them into things. Hands turkeys, suns, flowers, wreaths, puppets....

Glue stamps, bottle caps, pasta anything you have get those creative juices flowing at four. : )

Feet traced, make neat babies, try it. : )

Paper plates colored can then be cut into a snake with a string tied at the end and then your little one can fly it or hand them as swirls from a tree outside a window.

They make window paints that are fun.... I use them. Get an easel and chalk and they will have houls of fun drawing and painting right near you. Take pics of everything you do.

Hope this helps, I'm tired now... if you need more I'll let suggest some good books...

I have a fond memory of being a very tired mom of 3 and lefted my 4 and 3 year old out in the back yard painting at the picnic table. The newest member was sleeping inside. When I returned thay had painted each other from head to toe. I couldn't stop laughting as they looked so adorable, so I grabbed the camera and saved the moment.

Baby Blessings~

bellamia~*

[erikainorlando]

I am not sure but I really wanted to add that it can be very difficult and I support you!! My son was 2 when I got Guillain-Barre and couldn't even lift him up. I was a fixture on the couch ( alot like now too)...but we all got thru it..I used to try to play board games...watched a lot of Bareny. BellaMia had a lot of good ideas..I am just relating and supporting you!

Erika

[Guest tearose]

My babies are now 22 and 24 however...I wanted to reassure you your kids will be fine. Which is also why I wanted to respond...

Bella makes great suggestions. I forced myself to stay in the family room so they would not be in my bedroom and limited. I lavished them with educational tv and films and saved my energy to do activities when those were over. I recall many hours flopped on the sofa unable to move much at all. Then, I would do an art project or music or cook together in small paced blocks of time.

They remember the activities, songs, making lunch together, being creative together and they recall me doing my best. Your kids will remember the good too!

PS they both are fine young men now and went to great colleges and are not "damaged" for my years suffering with POTS!

[tinkerbella]

Finger plays are another easy activity to do and fun~ buy a book or get some online.

Musical insturments kept just for music time. Keep a special time of day for music, encourage your child to dance and sing. Use old scarves to dance around with while you cheer her on~ Get her a mircophone to sing with and teach loud and soft voices~ If you don;t have kids music, google kids internet radio stations and listen while you play along.

Many kids shows like dora the explora, have fun free games to play.

show her the kitty cat dance on youtube

My granddaughter watched that a bazillion times when she was 2. Yes, I introduced her to youtube. Note: Always watch everything all the way through before showing it to your child as some things are not what they appear to be.

google, Scribbler and have fun with art you will both love it.

Start baby sign lang. wish I had learned.

Puppets are fun. Start your own puppet collection and pull them out for special times and then put them away.

keep most of these things, "SPECIAL," so they are not just mixed in with the regular toys.

Start a shelf or closet with all your special play time things.

Once again, be creative look at everything you go to throw away and say can I reuse this today in a teachable way to have fun and make precious memories

that will last for ever.

Oh, you got to have pipe cleaners , tissue paper, + glitter to make flowers.

Coffee filters are great for flowers and using bingo markers on, dripping paint on. I love bingo markers!!!

One last thing, your salad spinner that you don't use, cut paper to fit inside drop in some paint and spin = SPIN ART

You'll be having so much fun

Kids are like sponges, they will learn whatever they are exposed to.

Once again I hope something here helped you or someone here.

Bellamia~

[Brye]

I have 4 kids and I'll share some of our favorites!! We have a bingo DVD that my kids love!!! IT happens to be sponge bob but I'm sure there are Dora ones out there. Does your daughter have a Hand Held leapster? My 3 year old loves it. There's a game that comes built in that allows them to draw pictures. You just click the pen and make a pig or ladybug run across the screen. You can choose your colors, decorate a farm. As they grow you can buy games to fit their age group. They're all educational too!!

Our other favorite is those foamy stickers you get at hobby lobby or other craft stores. Wal-mart even carries them. Not horribly messy and my kids love pulling the backs off stickers.

Wish we lived nearby ... she could come over and play!!!

Good luck!

Brye

[kayjay]

Tammy, I worried so much about my daughter. I got sick when I was expecting her. I actually was induced because of my blood pressure ( now we know it was POTS).

I have a M.Ed in education and never wanted to let my children watch tv and planned to read to her a lot.

Let me tell you- PBS was a life saver for me and now there are tons of great shows. So if you let her watch a little tv don't worry about it if you choose good programing. Also I was not able to read to her much but we had picture books and she is an terrific reader (well above grade level and at the top of her class).

It is also really important that children learn to entertain themselves. My daughter is very creative and a lot of that has to do with her playing alone. The right toys for her made a big difference. We had an art cabinate in the kitchen and my children were allowed to use anything but paint with out asking. We had a granite table to playdoh and things were easy to clean up- you can get a plastic table cloth and tape it to your table.

She also really liked "little people" and then playmobile. I also had outdoor toys in the house- like a plastic play house.

Please don't give into the Mommy guilt. I didn't nurse, let her watch to much tv- was so sick when she was little. She is a perfect child- great reader- top of her class- very mature- kind - loving- compassionate and feels good about herself ( how many of us can say that?)

As a 5th grader she made a poster that had a baby picture of her smiling and under it she wrote " I have always been happy with my life"

I just want you to be encouraged that the bad things in your life may be good for her. Maybe she will be more independent, maybe your illness will affect her career choice later in life. I wasted energy feel sorry for my children and they are so blessed because I love them and I listen to them ( when I don't have a headache).

I do wish I had made my children clean up after themselves better. They still leave messes- Best to you!

[Aprilmarie52]

Leapfrog also has a tag reading system now. You use the pen and it reads the words for you (you do have to buy the special books that go along with the pen). My girls (2 and 5) love it! I also have them do little things to help me around the house (dusting with a cloth, picking up after themselves etc) They actually really seem to enjoy it. We sort of play a game and sing the clean up song when they do it. Kids that age love pretend play. We have a play kitchen, dolls, a play house etc that they play with. My youngest has recently discovered playdough and likes to play with it.

[MomtoGiuliana]

There are "books on tape" that you can check out, along with the picture book, at libraries. I was fortunate that I rarely had/have trouble reading aloud to my daughter, but we still enjoyed checking these out and looking at them together when she was a toddler/ in pre-school.

I agree with what others have said regarding guilt. It's a terrible feeling. But there is no need for it. We are all doing the best we can given the circumstances handed to us. And adversity is not a bad thing for a child to be faced with, along with all the love we can give.

[Tammy]

Wow, you guys are wonderful! So many great ideas that I can't wait to give a try. Thank you so much for all your input and support.

My guilt falls more into the fact that we adopted our daughter and I sometimes fear that she may have been better off with her biological family, as it was a situation where her birth parent felt very overwhelmed with so many other children that she chose adoption for her last child, which is our daughter, however is a very active and healthy person otherwise. I wasn't nearly as sick as I am now when we adopted, so the situation really has changed and so I'm left wondering at times if we really did the right thing, but yet I love my daughter soooooo much and hope that she'll be happy with her life even with a sick mommy. I guess I just sometimes think and wish that she was biologically ours, especially with my health situation as such.

[MomtoGiuliana]

I felt really guilty when I was sick and my daughter was an infant. So I understand how you might be feeling. You should not feel guilty. 1) You made the decision you made based on what you knew at the time. no one can predict the future--especially a future with a condition like ours. Although in most cases patients improve. 2) you do not know what the future holds even now. Many people with POTS get better over time. 3) As I think many have attested to, a sick mommy doesn't mean a bad childhood, at all. You love her and that is what she needs most. You're doing the best you can and you're doing a great job, I know it!

[Guest tearose]

Oh Tammy, please believe that children will learn to be more kind and compassionate and they are resilient.

You are meant to be their mother and your love is all they need.

[paint-the-moon]

A good friend of mine recently wrote me this letter after I expressed to her how guilty I felt for not being the kind of mommy I used to be to my little angel. It was really inspiring to me.

My mom was diagnosed with Systemic Lupus when I was very young. She is literally allergic to sunshine (can you imagine?) and has multiple symptoms, mainly arthritic conditions and most recently has developed Diabetes. She had periods of extreme illness when I was young, and wasn't well enough to participate in many things in my life. I guess I tell you this to ultimately tell you that, in the perspective of the 'daughter', none of it mattered to me. I mean, I always worried some about her, but what I remember the most and still cherish today is that she always loved me. With a passionate love. And, at the end of the day, Love conquered all.

I pray that these days will soon become a memory in your life and you can spend your days doing all that you desire with your beautiful family. You are an incredible mom and wife and I see that anyone who has met your acquaintance is better for it.

[janiedelite]

Tammy,

I'm 36 and my hubby and I haven't been able to get pregnant. I've resumed taking meds for my POTS and am on birth control because of them. I'm not housebound, but can't work because of fatigue, pain, nausea, etc. But I want to be a mom so badly! We are fortunate to have lots of supportive family and friends in town. So we've decided to try adoption. I'm not sure if we'll be approved as adoptive parents because of my limitations, but I've prayed about it and believe that I could be a really good mom in spite of my disabilities. I might not watch them play soccer, or push them on the swings, but there is so much love and interaction to be had aside from those things. I think the previous moms have GREAT ideas regarding entertaining young kids. I hope you know that your daughter sees you as a blessing and not a burden.

[tinkerbella]

I hope I didn't make you feel bad by putting all those ideas out there. I just knew I had to surive having 3 kids all close in age and me being so sick. I was so happy just to have had my miracle babies. I always tried to do the best over achieve even when sick. I honestly wish I lived next door to you as my greatest joy is helping others with little kids, as I don't see my own as much I would like. I used to help a friend by laying on the floor and play with her baby and her twin niece who's sister was having cancer treatments. Made me feel important for a little while. I would teach them all my little songs and finger plays. Do some art on the floor with them. then my neighbor moved and I stopped driving and the twin's sister died. Made me appreciate every little bite of time with everyone. I'm a giver and the more I give the more comes back to me~

I bet there is someone even in your neighborhood who would love to give you a few extra hours of help for free. Sometimes the hardest thing to do is to ask for help. Maybe just having another friend over to play with another mom a few days a week would be a blessing.

Anyway my heart goes out to you~

bellamia~

[Tammy]

Everyone's advice is so helpful and gives me a better outlook on the sitation we are in. This support group really is such a wonderful blessing and I don't know what I would do without having a place I can go to where everyone understands the struggles of living with POTS.

Bellamia - You definitely did not make me feel bad with all your ideas. They actually inspired me to try a few creative projects with her. Thank you

[MomtoGiuliana]

I thought this might be of interest in light of the discussion regarding how our illness affects our children. I think this says what many of us know--that adversity in life builds resilience.

Katherine

http://www.scientificblogging.com/rogue_ne...egulation_adult

"The take-home point is this: not all stress is bad. Even as children, being faced with challenging situations is a good thing. We learn to problem-solve, think for ourselves, and build resilience to protect us from harm in future unexpected events. As an added bonus, dealing with stress early on helps us to develop emotional stability as well. You can't buffer your child from every non-happy moment in his life, so at least take comfort in the fact that while he is suffering in the short term, he is enhancing his well-being in the long term."

[runningshoe]

My kids were 12, 10 and 7 when I was dx but I teach preschool so I know a bit about this issue. The best thing about the early years is they love to play on the floor and so you can lie down next to them and participate while letting your body rest. The best toys are blocks and play animals and such because they let kids use their imaginations. You got a lot of great ideas from some of the earlier posts. I think that the key to surviving a long day at home with little kids is to break things into chunks of time - breakfast, playing on the floor, tv break if you need it, snack on a picnic blanket, craft time, read a book, lunch, listen to book on tape (you can rest or do a few chores), then start all over again! My kids loved when I took every cushion off the couch and added some big quilts and make a homemade trampoline. We could spend hours on that and though I wasn't Potsy back then I sure was tired with 3 little kids and all those cushions make a great napping spot. I totally get the guilt. I have had pots for 3 years and it has affected our home life. Some days my kids see me curled up in a ball by 5pm and I feel very badly. They other day one of my kids got a D on a paper and the teacher wrote on it - you need a proofreader. When I saw this I asked him why didn't you let me proofread this and he said because you were sick. UGH. My kids used to have homemade breakfasts everyday and now they make their own. I think in the long run they will be more independent and compassionate. But in the meantime it still hurts - I like fully participating and now I just can't. Hang in there.