Sunday, March 9, 2014

tics & dots

  I've never quite sure of how much I want to share here. It's an ongoing process I guess. I easily share the bright and shiny bits, as most bloggers do, but I try to limit my gloomy realness. My life isn't always a bed of roses (haha, whose is?) so when I'm feeling frustrated or going through a difficult, stressful time I avoid this space. I think, "well no one really reads my little blog... I can just be a total bummer and wallow in my woe-is-me vibe!" but I'm assured by my stats that you do read it. Somewhere out there (and a lot of you are in the Ukraine-which seems really magical to me) fingers are clicking to get here and readers are reading my words. And aside from what other people think about my thoughts, I work really hard to be a positive engineer of said thoughts. It is not my natural state to be free n easy, light and positive, but it comes more naturally to me daily.

   All that said, let's be real... I've been feeling a bit taxed as of late. There are days when the singleness of being a single mama to two is really trying and tiring. Throw in the ever constant winter viruses and dark days and I'm a little worse for the wear of it all... My children are so sweet and kind. I have, in moments, been less than patient.  It's been a little tense around here. Last year, my daughter was diagnosed with Tourette Syndrome & Obsessive Compulsive Disorder (My son was also diagnosed with both many years ago). When these things first come on it's a bit heavy for a while. Most people with Tourette Syndrome experience a pretty hectic onset that usually evens out and diminishes somewhat by puberty. My son is doing really well and has only a few pretty low key tics that don't really interfere or get noticed much-which he is happy about. Right now, my daughter is going through a pretty diverse and constant battery of tics. It's frustrating.  She does well when we're out of the city, in nature or engaged in focused creative activities. Tourette Syndrome "tics" are triggered by over-stimulation, stress, tiredness, excitement, illness. I am so happy my kids are healthy and will be able to have wonderful lives and there are no physical problems caused by TS and OCD but I have to be honest, to people living with them, that's me, the tics are disruptive, stressful and super annoying. I hope that doesn't sound insensitive or mean. I adore them! But trips to say, Target are sheer hell... I feel like a jerk saying that. I know it terrible for my kids to be doing things they don't want to be doing and having the repetitive thoughts and actions they have,
   Transitioning from, playing with her wooden barn to dinner or getting out the door and off to school are 2 really difficult times in our house. My little one screams, hits, pinches or just refuses to go if she is unable to complete a complex series of tics or parting rituals in her desired exact order (play with barn, get stuffed kitty off bed, take drink of water, use bathroom, put sweater on, put shoes on, pick up bag for dad's house...). Meal times are rough. When she's in rage mode nothing can get through to her, I just have to step back, wait and keep her from thrashing into something. Her brother and I have been tip toeing around and walking on eggshells for months. Her Dad, even though he was there when the neurologist diagnosed her and explained everything, thinks it's not a real condition and refuses to do any modifications to their activities (such as not going to loud movies every time they get together) or reading on how to better support her. When she returns from visits to his place, she's sugared up, way overstimulated and totally flipping out, it takes hours of heavy tics and tantrum throwing just to get her back into a chill rhythm. It's hard enough "co-parenting" (even in the limited amounts that he is with her) when there is simple animosity or poor communication, it gets even more complex when the parents aren't on the same page if a child has special needs...
  I read a lot. When I was at my wits end, This book helped me immensely. And just a few weeks ago I was reading through the Sears family discipline book looking for ideas on dealing with the daily violent freak outs and came across their idea for a connect the dots style chart for a big reward after many days of accumulating dots. My gal really wants to go on a trip to Portland OR, Her brother and I went last month and she was pretty jealous (Ok, she was totally enraged when she found out and screamed for 2 hours breaking several items in my sewing cabinet in the process). I explained that going on a trip and staying with friends is only possible when everyone is working hard to be as kind as possible. We talked about trying to stop and think and calm down when you can feel yourself getting angry. We drew pictures on a piece of paper of all the different things she wanted to see in Portland: parks, flowers, cupcakes, bridges, more parks. Then I drew many dots around it, about 40-50 I think.  She get's 2-3 dots a day and if she seems like she's getting upset I say "Wait, think about it, we want to get all those dots connected so we can go on our trip sooner..." and it usually works, things have been pretty good the last 2 weeks. And now almost all the dots are connected!
  We've been getting outside. The TV is unplugged and not getting any action.  Friday we went on a premature nettle quest (still too cold) and ended up spending over an hour at the cutest yarn store I've ever been to. My gal sat next to the faux fire place playing with knitted farm animals and was mellow while I looked at all the amazing yarns. The lady working was so warm and genuinely friendly. Most stores in the city are pretty un-welcoming to kids. It was so lovely to be in a cozy small town for the afternoon.
 We came home and the day just got brighter and warmer, windows were opened and we finally did a thorough clean out of the gross mud room which is now so organized and minty smelling. That little glimpse you see above is a "before" pic.
 Big brother was off with his buds and spending the night at a friends so we had a little walk in the drizzle and coffee date, just the two of us, on Saturday morning.
 "Mama, take a picture of me before we get coffee cuz we're having such a good day!" she said.
It was such a good day. A really special weekend. xo m

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