Mom With Pots

[jjpots]

I was wondering for those of you with POTS and small children what do you do when feeling bad? It seems to me like for the past month with me not being as active and needing to take it easy that the kids have really got out of control. It's like they know I can't chase them around and it's hard to keep running up and down the stairs to see what they are getting into.

My oldest just turned 11 today and my twins (boy and girl) are 5. They had my oldest son in tears because dad was gone, I was trying to relax and take a tub and they were just terrorizing him. I could go on and on but just wondering what tips anyone has for when you aren't feeling well to keep the house from chaos????

Thanks- JJH

[Suzanne]

My sympathy goes out to you. Looking back, I was a very busy mum who buzzed about all day and night doing everything I could for my kids. I think now that I should have spent more time on the lounge reading them a story. Giving yourself permission to rest and lead a quieter life is ok. It is hard to discipline when you are tired. Having a clear understanding re discipline is a must. Kids can go to time out and you can still be resting. Can you have a set time for play upstairs and then bring them down for a while? It is a challenge when you are 100% fit, and so much more difficult for you. I have 3 boys, 2 are ADHD, so our house was noisy, lots of tantrums etc. Once I sorted out the discipline (I had to go to a counsellor for strategies), the house ran better.

Hope you will be ok, it is such a special time with our children, they grow up so fast, so I hope you can enjoy them too. The other point is that your health is No 1 priority. The kids and hubby need to revolve around that. Wish I had done it sooner!

[MomtoGiuliana]

This is tough. I only have one, a 5-year old now, and she is calm and easy-going and cooperative, most of the time. If I am feeling badly I can lie down and she will lie down with me and read or she will just play quietly, independently. This is not due to much I have done with discipline, mostly it is her personality. I can imagine with 3 kids it must be a lot harder. I think I have learned, even with my easy child, that setting limits and being pretty strict with them and having consequences when those limits are overtaken, really helps. This is an on-going process. Also I believe the more one-on-one attention a child gets, and positive reinforcement (catch them being "good"!), the easier discipline is.

Hope you feel better soon. Take care of yourself.

[Tammy]

Hi JJH -

I wonder the same thing you do. My daughter is only two, however, but I do worry how in the world I am going to keep up with her. I have a terrible time diciplining her due to my extreme weakness and it definitely shows as she rules the roost, so to speak because I can't physical get up to deal with her when she's in trouble about 90% of the time and she ends up destroying the house and gets her way with everything because I can't handle when she screams - makes my ANS overload! I just keep praying that somehow she'll turn out okay, not sure what else I can do either. I get irritated when people tell me that I need to discipline her more.... they don't have a clue that I physically can't chase her down and get her to take a time out, etc. I'm really worried about Potty training as I can't squat/kneel and get back up as needed more than about once a day without major symptoms, so no idea how I'll be able to bend over to get her diaper off each time we need to try and go potty. This is definitely not the way I imagined being a mom would be

- Tammy

[Guest tearose]

Good topic jjh.

My kids are not little anymore, however when they were little, I would worry that I may permanently damaged them due to my chronic POTS, fatigue, and inability to feel like I could be consistent. They are fine in spite of all my trials. I was able to teach them the important lessons and things like time outs and planning around their needs creatively was what helped.

If you can, try to plan your bath or quiet time ahead and let them know what will be expected of them while you are taking care of you.

The older son can take phone calls and the little ones are to do coloring until the timer goes off and then...they can watch a video.

Make a chart for good behavior and tell them how you appreciate their cooperation.

Bring them into this dilemma and ask for their advice and input. Our children come up with great ideas!

I think our children are more resilient than we realize. Mine remember many good times and they do remember times I was on the sofa...but I have left positive impressions in their memory banks. They learned compassion, patience and that even though I had a disability, I was there for them. You are thinking about this now and for sure will find your unique ways to make memories of good times with your children too.

I bet they will look back on these years, of running around upstairs and teasing each other...and realize they were "normal, healthy, spunky kids". These hard times will pass and you will feel stronger again...I promise!

You are such a loving mother to care enough to want better for your children and take care of you too!

take care,

tearose

[jjpots]

Thanks for all the input. I have told them what I expect but they don't really seem interested in that these days. I did make a chart but they only stayed interested in that for about a month. I wrote down all the positive things they could do to earn stickers. It did work when they were interested still.

Today I told them mommy really needed to lay down because I wasn't feeling good and to please lay down or play quietly. (Dad and older brother are gone hunting) Instead I ended up having to run downstairs to save my oldest son's fish. They stuck one in the filter and the other flopped out and was stuck between the wall and his dresser. I finally thought to take out the drawers on that side and was able to move it just enough for the fish to fall to the ground so I could reach him. He floated sidesways but with lots of prayers for the little guy, he is still alive several hours later. I'm hopeful he will make it. It probably sounds funny but I was in tears. They had completly destroyed my oldest son's room (which he shares with my 5 yr. old boy) and I was already feeling bad.

Any who, I've been trying to explain the whole concept of respecting others' things and obeying your parents. I just feel at the end of my rope so often these days:( I called my dad who lives in AZ and probably got him worried since I was crying on the phone to him- again.

At least the twins are in preschool this year so Mon., Wed., Fri. they go from 12:30- 2:30. Tomorrow will be a better day I know. I just keep praying for patience and wisdom. It's great to have such nice people to chat with online too:)

Thanks,

JJH

[Rachel]

Hello JJH,

It is tough to be a mom with dysautonomia. Children are certainly a blessing, but they are also a challenge!

I have an almost 2 year old son. He is very well behaved, but even still I need a lot of help. My husband is a daily help. Friends and family have also helped me out a lot. We are actually currently living with my parents due in part to my health and the challenges that come along with that. On a bad day I simply must have outside help to take care of myself and William. Sometimes this means that Will must come home from work to help me. Other times my mom is here and is able to take care of William for a while. I've also had friends help out (with cleaning, caring for William, shopping, etc.). Is there a neighbor, relative, or friend nearby that you could call to help you for an hour or two so that you can get some rest?

Despite the physical challenges, I do try to do as much as possible on my own. If I'm alone on a bad day here are some of the ways I cope:

- William and I watch a kids dvd together. I lie down on the sofa and William snuggles up next to me on the couch. We often have popcorn too, which is almost guaranteed to amuse William for half an hour. (I eat off the hull so that he doesn't choke on it. He just gets the fluffy "melt in your mouth" part).

- I lie on the floor next to William while he colors. Or we play with a simple toy like Mr. Potato Head, or do a puzzle.

- If I'm up to it we will sit on the sofa to read or look at photo albums.

- If I'm really feeling bad I lie down in bed and we read books together. Sometimes I'll just take a nap and William will look at his books next to me on the bed.

- I rotate toys so that William often has something "new". On a bad day then I can pull out a toy that has been hidden for a while. It is suddenly a new treasure! William wants to play with the new toy, buying me some time to rest.

Perhaps you could think about some special (but easy) things that you and your twins could do together on a bad day (movies, coloring, reading, puzzles, playdoh, CandyLand...). That way they get to spend time with you, but you get to rest a bit too. It may be that your twins are acting up because they are craving attention from you. Sometimes William acts up simply because he is wanting my attention and I just haven't been physically able to give it to him.

On a bad day I can't be as strict of a disciplinarian as I am on a good day. I just don't have the energy to chase down my son. So there have been times when Will has come home and had to clean up a mess that William made. However, having firm rules (with consequences for disobedience) has helped to keep those times to a minimum. I have noticed that spending time with William daily also helps a lot. He is less likely to act up if I've taken the time to play with him (even if it is just lying down and reading or watching a dvd), praise him, and encourage him.

Sticking to a routine helps as well. It may vary a bit, but the routine is fairly predictable and William looks forward to certain times such as snuggling in bed with me in the morning, watching Veggie Tales or Pooh in the mornings, and reading before nap time.

That must be tough having stairs in your house. I can't imagine! We have stairs in this house too, but we put up a gate and stay on the main floor.

Hopefully these ramblings have been a little bit helpful. I'm sorry things have been more difficult for you this past month. Hang in there. Keep loving your children and spending time with them. You'll make it.

Hugs,

Rachel

[Eli6596]

Hi,

I have had nearly exactly he same situations. I did have to laugh at the fish story. I have an 11 year girl and 6 year old boy. My girl has been always been super easy to discipline, and my POTs was not really bad until my son either. My son is very rough, strong willed, but loving. He loves to try to torment his sister, mess up her room, etc. Boys can be so difficult. Like you, my son quickly learned that I cannot pick him up or chase him well.

Two things have saved my sanity and health. Preschool and now kindergarten channel his energy. Full day preschool was the best. The second thing that helped was a discipline system called 1,2,3 Magic. You should be able to find the book in any bookstore. It is very popular with millions of copies sold, I think. We modified the system a little to fit my son. My son hates timeouts more than spankings and yelling at him. We have stopped the latter two. He is doing well in kindergarten.

Take care,

Karyn

[jjpots]

Thanks Rachel and Karyn,

I've already made a few changes and today was a bit better - thank God! I'm trying to start up the chart again with stickers for positive actions. I need to go over the positive actions each day though so they remember what I expect (or hope) from them. I also realized that I need to quit putting them together for everything. Because they are twins I've just always done everything together, such as, getting ready for bed. I don't know why it didn't dawn on me earlier to send them to brush and stuff and diff. times. It was better tonight but they still argued about who got to go in first! Now that I got past the first night hopefully we can just alternate who goes in first.

Good news too- the fish is still alive! The story is getting slightly more amusing to me too now but was in no way funny yesterday. My emotions have been all over the place these days. My PCP just put me on florinef to see if my POTS gets better if my emotions will level out too.

Thanks for chatting. I look forward to reading what everyone has to say

JJH

[Rachel]

JJH,

I hope you find these changes helpful, and I hope that the florinef provides some relief from your symptoms.

Glad to hear the fish made it!

Rachel

[jjpots]

Rachel,

I hope you don't mind, I just pm you