For those out there that are currently parenting or have previous, but continue, to parent with PsA....
How do you do it?
I am a stay at home mom to wonderful and gifted 4 year old boy. He is our only child. There are some days I feel like I am failing, then others things are going smoothly. Really it depends on the PsA, how much sleep I got the night before, and how my son is acting. The 4's have been very challenging.
We try to attend festivals and kid activities around our town as much as we can, not over doing it. He attends two "classes" twice a week to give him some outside of the house activities. In the fall he will start kindergarten. We are both introverted, love being at home, and quiet times.
BUT, when my PsA is acting up, flaring, or I haven't slept in days, I turned into stressed mom. He senses it and starts pushing those buttons. Then I yell, he screams, round and round. Boy can he push those buttons!! So here's the questions....
How do you do it? How do you parent while dealing with PsA and all the side effects and side diagnosis? How do you keep yourself from feeling like a failure? What are the tricks to keeping the peace?
I was diagnosed when my son was a year old and my daughter was 5 years old. My daughter was in school 1/2 time and my son was home with me, but he was a napper for many years. I loved napping with him for a few years, until he was almost 5 years old.
I'm also really lucky in that my husband is a teacher, so most days he is home by 4:15, and I can rest then as needed.
Even if it's just the two of you, take the time for down time. I also always found that even on the worst days, 15-20 minutes of floor time, or concentrated activities would buy me an hour or two of quieter time, when I could rest my body and my mind. If you haven't already done it, give it a try. The time when you need it most is when you are really feeling it. It can be anything, as long as you are both engaged in it together.
I have five homeschooled children, ages 7-16. I've had PsA since I was a child, not diagnosed until four years ago.
For me it's about finding balance. We do medical appointments in the morning when my husband is home,and I try to run errands then as well. In warmer weather we (or whomever is able!) hike once or twice a week or go to the park to play. After lunch we have quiet time for an hour / hour and a half when the kids quietly entertain themselves (or play outside) and I rest. Most weeks we have evening activities a day or two. We also have chosen out-of-the-house activities that give me enough rest in between - Tuesday Night Sunday School on Tuesdays and homeschool co-op on Fridays. I go to Bible Study on Wednesdays alone, for some "me" time.
It's definitely a challenge to respond in a calm, kind manner when you're in a lot of pain and/or are sleep deprived, nevermind try to understand the mind of a five-year-old! :)
Stoney, I need to work on more "quiet time together" activities. He does play well by him self but wants to run and play outside just as much as he should. We are finding a balance.
Nym, My goodness! Adding homeschooling to the list takes it to another level! We briefly thought about homeschooling, but we are leaving it as a last resort, if public school doesn't work out. My son is gifted and doesn't fit into the "box" child profile for school. I want to give it a chance and see how he does first.
It's funny because I see homeschooling as easier than sending five children to school! Well, my five children, anyway. Because of the age range, they'd go to three different schools. Two of my children have Aspergers, so I would continuously be advocating for them within the system. I'd have to get up every morning in time to get five children ready for and to school (and pack lunches that were friendly to each child's food issues), and then pick them up at their various schools in the afternoon...and help with hours of homework. Instead, I can stay in my pajamas as long as I wish, I can nap in the afternoon if I need to, and my kids keep me moving and motivate me just as much as I motivate them!
As far as feeling like a failure.... our kids are learning a lot of WONDERFUL lessons living with a disabled mom. My children are learning to look at life not only through their own eyes, but through the eyes of someone in a wheelchair, someone with chronic pain, someone with mobility issues, someone with chronic exhaustion. They are learning not to assume things about people - because some people who look healthy don't feel at all healthy. They are learning empathy. They are learning to see blessings in difficult situations.
That is beautiful Nym. Your children are the kind of people we need in this world. Yes my son is learning some life lessons a bit earlier but he is also learning how to help and take care of himself. Something kids these days need more of.