Friday, March 29, 2013

23 Weeks

This is still happening:

And this is happening:

And this is how I'm coping:

Six months from now when I'm whining about losing the baby weight, I'll thank you not to bring this up again.

Thursday, March 28, 2013

Too Close to Home

It's been a really long time since Down syndrome made me cry. Sure I have the occasional Pity Party for One and I am sometimes reduced to tears over the relentless NEED associated with parenting any child, but I've moved on from any sort of grief over Pacey having been born with an extra chromosome.

I'll be honest and say, I normally don't read the majority of stories in the news about people with Ds. The feel-good stories about a young adult being *allowed to play* in an important game or being voted homecoming king/queen or whatever don't actually give me the warm fuzzies. I've learned that, for me, I can't read about and internalize many of the less positive stories because I simply don't have it in me to worry about things before they are relevant to us and our son.

After seeing many references to the story about Robert Saylor, however, I read it. Although I didn't read everything written on the topic, I feel like I read enough to have an understanding of what happened. I certainly read enough to make me sob.

This story hit way too close to home. That young man could so easily have been my son. Although I cannot possibly place myself in his brain in that situation, I can envision Pacey deciding that he wanted to see that movie again and needing a great deal of time and patience to help him understand that either a) that just wasn't possible and he'd have to accept that, or b) he could absolutely see the movie again but we would need to walk out of the theater and buy another ticket. It can be very hard, once he is in a particular train of thought about something he desires to help him break out of it.

I also believe my son would never hurt someone intentionally, and the thought of him being considered a threat is ludicrous (again, acknowledging that he's only six now and Robert was a grown male). But I can see him feeling so overwhelmed by a situation he wasn't given the time to comprehend that the only way he felt he could make himself understood was to lash out. To throw out an arm or to push someone who appeared threatening away from him.

One of the most crucial pieces to understanding my son is to know that he requires extra time to process. That if an average response time is three seconds, he may need ten or he may need more. He needs time to understand the question or issue and even more time to formulate his response. He may need questions rephrased, or concepts broken down into smaller piece for him. This is important in school, in socializing, and in teaching him discipline and appropriate behavior at home.

I am in no way blaming the aide that accompanied Robert for what happened; I wasn't there and I don't know what role he or she played in trying to diffuse the situation. But I think we all, as parents, hope that one day our children will be able to establish some independence from us, to go to a movie with an aide or a friend, perhaps to live on their own or with their peers. It is overwhelmingly discouraging to consider that there may never be a time I can fully trust in Pacey's safety if I am not physically present. We worry about predators, we worry about bullies and unkindness, and now I can personally add law enforcement officials to that list. I know that no parent ever completely stops worrying about the safety and well-being of any child, whether they have special needs or not. But this just rocked me to my core. I cannot stop thinking about that mother, getting this phone call and trying to process something so completely unfathomable.


One of the reasons this has hit me so hard, I think, is that I've been struggling lately with some defiant behavior from Pacey. I know that a large majority of the time, he doesn't refuse something just to be oppositional, but he can't articulate why he doesn't want to do it, or what he wants to do first. I have a really hard time, especially when we are on a schedule and I need him to do something right away with allowing him at least the opportunity to process it, do it a different way or in a different order or whatever it is he wants. He is still small enough that often, when he refuses something, he gets picked up and relocated against his desire (and I do feel it prudent to point out that there are still plenty of times where he is given every opportunity to process, communicate and cooperate and he still refuses because he is six and inclined to be a pain in the ass on occasion).

I was sort of dreading this week of spring break and the large number of daylight hours to fill with no down time. But it's turned out to be a really welcome break from the daily battles around fulfilling our necessary routines to get everyone where they need to be. I've been really consciously trying to allow Pacey to do things in his time frame where reasonable, to force myself to wait those extra beats for him to process and decide to cooperate. It must be so immensely frustrating, after all, to constantly feel as though the world just doesn't quite wait for you to catch up (I realize I may be projecting, but I think it's a reasonable assumption here). And I see him responding really favorably. We don't start every day at war and I am so much more able to appreciate his - at times maddening - charm. I see him believing that his words have power and therefore making more of an effort to use them and make sure he's understood.


I don't really know how to end this post. I don't think all police are bad. I don't know what the answer would have been in this situation. I'm not sure how we are meant to train safety officials to understand people with intellectual disabilities; I am the mother to one such person and it still feels like an impossibly steep learning curve some days. But I do know this: this story is unacceptable to me and the way it makes me feel will never stop affecting me and my life with my son.

Thursday, March 21, 2013

WDSD 2013

I don't always love Down syndrome. I don't always know what the hell I'm doing with my own kid, let alone how to interact with other children and (especially) adults with Ds. I was unfortunately not delivered of any special Super Mom Powers when Pacey popped out to say hello 2.5 months early.

But my god do I love this kid. I wouldn't change him or the way he's enriched my life and my relationships for anything.

Today I'm doing my best to celebrate all the things about him, whether they have anything to do with Down syndrome or not. Happy World Down Syndrome Day.

Wednesday, March 20, 2013

Phone Dump

Huff - best, most tolerant dog ever

"Mom, we're frogs!!"

Elephant family in the bath

View of her chauffer from the backseat

I love stuff like this from school

Hard at work repairing our hot tub heater. Seriously
useful having a husband who knows how to fix just
about anything.

The u/s tech genuinely seemed to think this picture was
adorable. I mean, yeah, mother's love and all that but
that is a straight-up SKELETON!

Soaking up Vitamin D wherever we can get it (this was in
a bedroom of the house we looked at last

Sleepy Girl sleeps sitting up

Happy spring my ass

Monday, March 18, 2013

Quick Takes

* We're getting closer to a decision on whether we are going to put our house on the market again or begin construction to add two more bedrooms and stay put. There are a confounding number of variables that are going into the decision, hence why it hasn't been made yet. We saw just about the perfect property come on the market yesterday, unfortunately too soon for us to be in a place to put an offer in (and it will be gone before we are ready). It was nice to see something worthy come on though, because there's a SERIOUS lack of inventory in our area, similar to many other areas in the country right now. Anyway, we should get the remaining data we need to make a decision hopefully by the end of the week. One way or another, changes are a-coming.

* I attended Pacey's spring conference at school on Friday and came away feeling so good. He's progressing really well and I just cannot say enough about what a great team of people we are working with. We are in the process of scheduling a meeting in the next few weeks to get ourselves all on the same page before we do his IEP in May. In the meantime, we are planning a few ways to increase his independence before the end of the year which, selfishly, will make my life a little easier. I'm conscious that while I'm keen to be involved and support his educational process however I can, I also don't want to be overbearing and get in the way of his being independent. Anyway, the conference came at a great time because I've been feeling overwhelmed and discouraged in light of some challenging behaviors with him lately. I keep sitting down to write about it but I just don't quite know what I want to write. I mentioned to a fellow parent lately that while the first few years of parenting a child with special needs has its own challenges, I feel like as your kid gets older things get more complex and the challenges can be more emotionally and mentally taxing.

* Brighton continues to be maddening, entertaining and completely irresistible in equal parts. She has become weirdly accident-prone lately, which combined with a few unusual afternoon naps leads me to believe she may be undergoing a growth spurt. Unfortunately her accidents have led to several facial injuries so, well, let's just say we opted out of spring school photos. Chris has been working with her on some basic addition and she is showing an aptitude for and, more importantly, a real interest in numbers. He's geekily thrilled.

* I think I mentioned that I dropped our iPad and shattered the screen. It took me a few days to bring myself to send it off for repair so only got around to it on Friday. We are currently on our fourth iPad-less day and Pacey is in serious withdrawal. When I reminded him yesterday that iPad was "at the doctor," he retrieved an Amazon box that was waiting to be broken down and recycled, got inside and politely requested that I send him along after the iPad.

* I didn't take a 21-week belly picture, but rest assured things are all still happening and growing, etc etc. I maintained my personal tradition of exposing my fetuses to paint fumes nice and early by painting our master bathroom (hey, someone has to take over my position as Master Painter, might as well get it into their blood ASAP). I feel a lot of kicking and wriggling but my recent ultrasound showed an anterior placenta so it will likely be a little while until Chris or the kids can feel the movement from the outside. I still sort of suck at being pregnant (the amount of general whining and complaining I do is pretty uncharacteristic for me), but I feel like I've grown into a pretty ok mom so I'm looking forward to getting through the next four months and into more gratifying territory. My belly has grown enough to comfortably rest a small bowl of ice cream upon, so there is that.

* It snowed several inches this morning and is due to be no more than 20 degrees for the next three days. This is...unacceptable. We are all well and truly done with winter - even Chris now that the fishing season has ended for most of the fish varieties.

* In order to write this post I just invented a seriously genius activity for the kids. I am sending them off with my phone camera to take photos of various groups of things. The options are endless....color groups, shapes, textures, patterns, objects that start with certain letters, etc. And I am alternately specifying that they look upstairs and then downstairs so they are running all over, burning off a little energy in the meantime. Win.

Tuesday, March 12, 2013

A Few Questions

I saw this over on Navigating the Mothership and I thought it might be a good prompt to get the writing juices flowing again.

1. What were you doing 10 years ago?

Ten years ago this month I was getting ready to get married (wedding was April 26, 2003). I was working in the radiology department at a private hospital in Chichester, England, where I was given far more responsibility than was probably legit for someone with no official training. My sister was taking care of most of the wedding details in California and I was focused on looking gorgeous (regular gymming, fake-tanning (I KNOW)) and pinching pennies to cover our expenses to travel over for the wedding. We lived in a tiny one-bedroom flat with no actual heating beyond little space heaters. We frequently resorted to running the ancient tumble-dryer even without clothes in it because it contributed some heat to the living space. We were pretty close to broke all the time and it was stressful planning a wedding from far away but mostly I remember that being a pretty darn carefree and fun time in life (whether I realized it then or not).

2. What are five things on your To-Do List?

I'm going more with Life Goals for this, as opposed to Boring Shit I Need to Get Done This Week.

- Fundraise for and complete a 3-day walk for breast cancer.

- Get another tattoo that represents my family in an abstract way.

- Take some photography classes and offer, probably on a volunteer basis, photo sessions specifically for children with special needs and their families.

- Go on family trips to Alaska, France, Germany and England to show our kids all the places that shaped their parents, both as individuals and as a couple.

- Take a solo trip with each of my kids to a place of their choosing (within reason).

3. What are five snacks you enjoy?

- Apples and peanut butter
- Shelled pistachios
- Tortilla chips and hot salsa
- Pretzels
- Triscuits

4. Name some things you would do if you were a millionaire:

- Pay off our mortgage and student loans
- Purchase a house large enough to accomodate Pacey and several other young adults/adults with special needs to form a "group home" of sorts.
- Encourage my husband to start his own business
- Buy a home for my parents here in the Twin Cities, to be occupied as often as they wanted
- Finally get over my inability to spend lots of money on nice clothes for myself

5. Name some places you've lived:

- Anchorage, Alaska
- Chichester, England
- Brighton, England
- Pasadena, California
- Outside Minneapolis, MN

6. Name some bad habits you have:

Biting nails/picking cuticles, grinding my teeth, leaving cupboards and drawers slightly ajar, letting my kids watch iPad while they eat so they will just SIT DOWN FTLOG AND EAT

7. Name some jobs you've had:

- Medical records clerk (after-school and summers through high school and college)
- Cook/cashier/server/janitor at a cafe (work-study during college)
- Radiology Assistant
- Publicist for a publishing company
- Temp at Yahoo
- Claims investigator for a medical malpractice insurance company

Neglected (20 Weeks)

It's been hard to feel inspired to write lately. I hit kind of a wall with winter and being pregnant and a difficult phase with one of my children. Sometimes it's therapeutic to come and vent, but hasn't felt that way lately. Anyway, I plan to be back later with a real post, but for now here's my 20 week picture. I'm dressed to work out because I....actually worked out. For the first time since getting pregnant. I hate admitting that, but I'm a terrible exerciser when pregnant. I have no qualms about admitting that my main motivation for working out is looking better and, well, it's only going one direction right now. But, it was great for my mental well-being and that's enough so I have a standing weekly date at the gym with a friend now.

Back later...

Monday, March 4, 2013

Ice Castles

I think it's pretty obvious (it will be to me when I look back) that this winter has been a trying one. I have had neither the energy nor the motivation to do much in the way of outdoor activities, and frankly the weather hasn't been all that conducive this year. We were floundering for something to do yesterday afternoon, though, and I remembered that a friend had mentioned the Ice Castle made from icicles outside the Mall of America. The weather was stunning yesterday so I talked my crowd-averse husband into a family excursion. It turned out to be great. Potentially not quite worth the price of admission, but then that is always relative when it comes to activities involving kids. I think the structures had probably done some decent melting over the last week, but they were still pretty darn cool.

This man is a giant sucker for his boy

View from inside


You can't really see it, but there's a heart carved into the snow behind us :)
After the kids had had their fill of running around we were tired of chasing the kids around, we went to a well-known local place for ice cream. The kids were surprisingly well-behaved and I got to fulfill a craving with some mandarin orange-chocolate chip ice cream. And then on the way to the car Pacey fell and scraped his hands on icy snow, Brighton got told off for jacking around too near the street and both kids ended the adventure in tears - as all good outings with young kids do.

19 Weeks

Me and my best girlfriend, S. As of this picture she was three weeks away from her scheduled c-section date (jealous). I've never had a pregnant-buddy before...I can highly recommend it. I'm sad that it has never worked out for my sister and I to be pregnant together, but this is the next best thing. She seems so much further ahead now, but our boys will only be four months apart. Can't wait to meet him!