Parenting with PsA

Calling all parents with PsA! What are your tips and tricks for getting through your day while caring for your kids? What are some ways in which you nurture yourself so you can better nurture your children?

After lunch I put some educational childrens programmes on (we have CBeebies in the UK which is educational and fun) for half an hour. I usually have a cat nap on the sofa which is enough to restore the fatigue. Haven't found a way to manage the pain and look after my 2 kids. They are 6 & 3 and are old enough to sort of understand my limitations.

I homeschool my five kids (ages 4, 6, 9, 11 and 13) and usually have 1-4 other kids (ages 6 months - 4 years) in my care on any given day. Most days we get housework type stuff and work on homeschool projects in the morning. Then lunch and nap/quiet time (for 1-2 hours every day, the littles nap and the older kids entertain themselves, work on projects, practice instruments, etc. ). During quiet time, I stay off my feet, sip some tea or coffee, and have internet, reading and/or writing time. I do a lot of my work for the nonprofit I co-founded during this time, as well as volunteer work, homeschool planning, lesson planning for the class I teach, etc. In the afternoon we usually do art projects, the kids play outside, I read with the littles, etc. Throughout the day I try to balance movement with rest.

On Fridays we have homeschool co-op and my husband has the day off, so he helps wrangle the eight kids who are usually with us. At homeschool co-op, I teach a class, then hang out and chat with other parents, put kids down for naps, feed the baby, etc. etc. etc. They have couches to curl up on, and it's actually a great place to take it easy and socialize while my kids are in classes.

Some things that help...

- Each family member is required to help out with housework. Each child is "captain" of a room for a week, then we rotate. The kitchen captain is in charge of loading, running and emptying the dishwasher and making at least one dinner a week. The dining room captain keeps the dining room swept and the dining room table clean (reminding people to put away food and clear their dishes when they're done) - the dining room is also our craft area / homeschool area. The living room captain cleans up and vacuums the living room daily (we have a crawler in our care 2 days a week). The bathroom captain empties the bathroom garbage as needed, makes sure the clothes hamper gets emptied into the larger laundry bin in the basment, and scrubs the tub/shower once a week. The laundry captain sorts, folds, and puts away laundry and does a load or two of laundry every day.

- My kids know how to cook. Part of our homeschooling is teaching the kids to cook. It's a great way to learn math, chemistry, biology, and feed our family! If ever I don't have the energy to make dinner, I'm confident at least one of my kids will volunteer for the job.

- On days when my ability to move is minimal, I think outside of the box. We do our fair share of reading, doing puzzles, etc. ... and I do things like send the kids on photo scavenger hunts for things: I give them a list and they go around the house and our street and have to take photos of as many things on the list as possible. We have dance parties or play "freeze dance" (like musical chairs, but with dancing and freezing, and whomever moves is "out"). The kids put on skits, musical performances and puppet shows.

Wow. My exhaustion and pain is so much I am lucky to get dressed in the morning let alone all of that!

It was tough when they were little but in typical mom fashion…you just do it because it needs to be done. Mine are grown now. Oldest has just finished getting her bachelor of nursing and is one exam away from being an RN. Youngest is in her first year of university to become a social worker. They are very helpful now…running errands, straightening the house, etc. I think havng grown up with a mom who wasn’t always 100% made them more compassionate adults. I’m very proud of both of them. =)

Hey Nym. I have a very active and busy 4 year old, and I can absolutely relate to your concerns over having the energy, or getting through the pain well enough to be able to function for your kids. I have done several things that help. First, my husband is lucky enough to have a job that allows him to work from home one day a week, this is the day that I schedule my doctor's appts because I know he'll be able to help with her. As far as the rest of the week, are you like me where your hardest time of day is in the morning? I try to get up before her so that if I am having a bad pain day I can take some tylenol arthritis (which really helps me btw) and slowly move around a bit, which helps some of the pain and especially stiffness to subside. The the rest of the day I kinda just try to ignore the pain, which I know is not easy, but for me it gets better as I go through the day. If I'm just having a really really bad day where the pain is just off the charts and it hurts just to "be" I call in reinforcements, grandma, friends, whomever is available to help me out. Don't be afraid to ask for help. Keep your close friends and family in the "loop" of your medical issues so that they understand, and let them know what they can do to help.

When all else fails and there is no one to help and I am feeling really sick, I'll make a "toy picnic" on the floor of the living room and put on a movie and I'll rest on the couch for an hour or so.

I'm blessed in that my husband is home in the morning and helps wrangle kids. I schedule doctor appointments in the mornings if I can and he watches all the kids while I go solo (although I've been known to show up at the doctor's office with 8 kids!!!). My friends all know about my PsA, AS, and such and are a great source of support.

One thing that makes our lives more interesting is that we don't do tv and two of the kids I babysit don't watch much tv. We watch the occasional movie (just had a family movie night and watched Hugo - great movie!!!), and lots of documentaries for homeschooling, but it's just not on much, if at all, during the day. On the days I'm feeling really bad, I'll put on a movie and it's a big treat - and I think that works great.

I added a new "tool" to my bag of tricks - my kids have become interested in Tai Chi, and I just to happen to have a tai chi dvd, so I can pull that out when they're looking for something to do and I'm looking for rest. :)

Nym - wow, I'm so impressed. I don't think I could do all you do on a good day! I think it is great that your children have been raised to be responsible and help out. The only thing my 6 year old is "captain" of is making a huge mess and then whining until someone 'helps him' (read: does most of it) clean up. I've found it very hard to be motivated to do all the things I want to do/feel I should do when I'm having a bad day.

I am currently studying at uni PT and I do some volunteer work, and have 2 children aged 6 and almost 2. My husband is currently working from home trying to do an IT start-up. The good thing is he can help out a lot, the bad is that we are living on very little money and I can't afford things that could help such as a shoulder massage when I get too stiff from pain, etc.

Now for some tips:

- have some simple dishes you can cook without a lot of effort, and if possible, make extra so you can freeze half.

- when I want to rest I tell kids it's 'cuddle time in bed' and they bring in toys or books and we can hang out together.

- I usually feel very fatigued in the morning and sleep longer, but I think the day starts of better if I make an effort and get up early enough to take a shower and move a bit before having to attend to kids. Helps release the stiffness and make me more awake.

- Listen to your body. I am a bit of a night owl and it's usually the only time I can relax with my husband, but if I really need it, I will go to sleep at a ridiculously early hour after the kids are in bed.

- Board games. Not easy with a 2 year old around, but definitely a way I can play with my older son who is extremely active by nature.

- Breastfeeding my daughter for the first year was excellent and I only quit so I could go on Meth. If I'd known that Sulfasalazine was ok to take I would have gone on that first and not quit. It gives you an excuse to lie down and relax while you feed and the release of oxytocin was so calming.

- Make sure you have some time for you to do what gives you pleasure. I like to read so I try and find time do that.

- Lower your standards a bit. I would love a tidy, sparkling house and if we hit the jackpot with the start-up, the first thing I'm getting is a cleaner. Until then, I am not going to kill myself trying to make things perfect. If I could teach the kids to pick up their toys I'd be really happy though.

My kids are 6 and 8. I started asking them to help me with household stuff and was amazed at what they can do (and they gained lots of pride and independence)

–Especially with meal/snack prep. I sit at the table, they can bring me a cutting board, knife, apples, plates, whatever I need.

–They can carry bags of recycling downstairs.

–Their laundry now goes in bags instead of a basket, which they (or I) can drag downstairs safely.

–praise them like crazy - “wow! My mom never let me run the washing machine when I was 8! You are amazing!”

We used to be a no-tv family but not anymore! Especially the little one - I use tv whenever I need it - better than getting overtired and losing my temper with her.

Also - the house is always a mess and I don’t care :). I tell the kids to put away 5 things each when it gets awful.

I let my mom friends help me a ton. They call from the grocery store and shop for me. “lotsa helping hands” is a website to organize playdates, grocery runs, etc.