Thursday, November 6, 2014

Eight

Today my little Peanut is eight. I can hardly believe it...sometimes it feels like I blinked and here we are. Other times, of course, it feels like several lifetimes have passed since he was born and completely turned the world upside down for us.

Chris can't be here today (he's on a business trip) but my mom is here celebrating with us. She was there eight years ago too, about 18 hours after Pacey was born unexpectedly. Not too bad considering she had to get from Alaska to Southern California. She was able to hold Pacey just briefly before she had to go and I will always be grateful that she was able to drop everything and come be with us during that crazy time.

I went to Pacey's classroom to read a book to him and his second grade friends today. I can't help but come away from every single trip to see him at school feeling incredibly grateful for him and the community we have around him. He is loved, he is accepted and he is appreciated for who he is.

Pacey Graham Harris, you are loved far and wide and you have such a gift for making everyone's day a little brighter. Happy birthday.







Friday, October 17, 2014

Day in the Life - Fall 2014

It's been awhile since I did a Day in the Life post, and Laura at Navigating the Mothership puts out a prompt four times a year for a blogger round-up. She's kind of amazing...once a year for the past four or so years she's documented a Week in the Life of her family and turned them into photo books. A lot of people might think that the minutiae of one's daily life is beyond boring and maybe to some people it is. I find it fascinating to read though, and I know from going back to read posts on this blog that there is SO much you forget in the details.

I chose to document Thursday, October 16th. I have to point out that this was NOT a normal day. It was the first day of a week-long business trip for my husband, and the start of a four-day weekend for the kids (statewide meeting for educators known locally as "MEA Weekend"). Very few of our usual routines came into play and I appear rather like a Lady What Lunches. That said, it was a beautiful busy day with my family, so here goes...

10/16/14 - Pacey is a few weeks away from turning eight, Brighton is five-and-a-half and Archer is 15 months.

6:30 - Our daylight-simulating alarm clock wakes me minutes before my phone alarm goes off. I am pleased to note that I hear nothing from the kids. They appear to be learning about the beauty of not having to get up on non-school days. Chris and I discuss briefly his schedule and he starts getting packed for his trip. I love lots of things about my husband but he hates to pack ahead of time and is therefore dashing around in a panic "looking" for things and then asking me to find them in the places he's already "looked." Not the very most fun way to wake up, to be honest.

6:45 - The kids are all awake now and looking to add chaos and noise to the tension of the morning. I herd them downstairs to watch The Avengers and get our morning going so C can pack in peace. Archer gets a bottle of milk, I get my cup of coffee with appropriate message.








8:00 - Chris says his farewells and heads to the office for a few hours before his flight. I make the mistake of reading the news, full of doom and gloom and general fear-mongering. I should really know better, as I spend the next 15 minutes contemplating the number of people C will come into contact with over the next week. Perhaps we will quarantine him for 21 days when he returns.

8:23 - Realize we have speech earlier than usual and therefore need to get in gear. Begin by clearing up the trail of detritus spread by the baby, which includes: three dishtowels, two measuring spoons, two plastic cups, two baby spoons, several pieces of cardboard, a box grater and my kitchen scale. Toddlers are so detrimental to efficiency. Throw some breakfast and clothes down to the big kids and hope that they will actually get themselves ready.

One man wrecking crew who is obsessed with my gloves
9:00 - Shower while baby creates a new trail of detritus in my bedroom. Get dressed for my training session later this morning. Eat a decent breakfast for once so I actually have some energy, while fending off baby who is desperate for a share of my food despite having already eaten two breakfasts himself.

Favorite breakfast: toast with hummus and grape tomatoes.
Also pictured: the chocolate chip cookies I wanted but did
not have.
9:30 - We arrive at speech therapy exactly on time. It is a STUNNING fall day, warm and breezy with a brilliant blue sky. Pacey's good friend S has just finished her session and the two are so happy to see each other. She goes to his school, they share a speech therapist and she is in his basketball league. It's fun to see him developing these friendships. S doesn't have very much verbal language but she uses an iPad to communicate as well as gesturing and some signing. It's nice to see how comfortable Brighton is with her differences.

Natalie, his SLP, has made such a difference for Pacey. 

S, Pacey and Brighton. 


Pacey goes in to do his speech work and I hang with the kids in the cramped waiting area. Another set of clients arrives that we are friendly with and I have another mom to chat with in between chasing down Archer and trying to prevent him from causing too much mayhem. Brighton works on a fall picture and her pesty little brother is bound and determined to scribble on it. I talk her into turning his scribbles into a "swirl of leaves" thereby avoiding drama. She declares that this is "the best day ever."

10:15 - We arrive home and as we are unloading from the car two women stroll up the driveway with kiddos in strollers. It turns out to be someone I met at the library storytime and she happens to live right behind us. Make introductions and chat; she's really friendly and has a daughter around A's age so I'm pleased she stopped over.

10:40 - Fly around the house tidying up for our babysitter. I've hired her to come over for a few hours knowing that I'm going to be on the clock for the next week straight. I need a little time to myself to prepare. She arrives and the kids are thrilled. They set to work making some pumpkin luminaries, I give her instructions and escape.

11:00 - I head to the gym for my final free training session I received with my new gym membership. It's hard, but not as hard as the previous session that I attended while hungover the day after Oktoberfest :/ (note to self: you are not 22 anymore). The trainer's next client is running late so I get some extra time.


12:15 - I head down to a local salon where I have a pedicure booked (again, this is NOT my usual day-to-day!!). My mother-in-law thoughtfully purchased me a gift certificate to a local place I hadn't tried and I have not found time to use it since August. Perfect day for it. I relax and thoroughly enjoy a little pampering in what turns out to be a lovely day spa. Finally, I head next door to the wine shop to stock up on survival supplies.

Ahhhhhhh

Hello, you beauties

2:00 - I arrive home to find the kids all playing outside with the babysitter. Archer has napped for two solid hours (hooray!) and they are all happy to be outside. It's gloriously warm and we decide to stay out for a bit and play in the leaves. We take turns raking up piles of leaves to jump in and I take about 400 pictures. At one point B asks if I will pay her for raking some leaves and I suggest payment in the form of cookies.



Sister, you missed a leaf!
Making leaf angels
Child labor
2:30 - After a cookie break we leave late for Pacey's orthodontist appointment. He was already having some major overcrowding and so had four teeth pulled this spring. Happily, she says his mouth is looking great for now and we can just wait another six months for new x-rays. It seems crazy that we are already thinking about orthodontics but overcrowding is a major problem for many kids with Down syndrome due to the smaller jaw size. We are hoping that by managing the fit of his adult teeth as they come in, there will be less to do with actual orthodontic devices later.
See you later, temps in the 70s. See you next
spring.
A model patient
3:30 - Since the weather is so nice, I decide we should head back to the farmer's market on the way home. We have a nice stroll through the market and then head down the block to pick up a book I have on hold at the library. The kids are all in silly moods and it's just so nice to be out and about. Everyone has the sense that it's probably our last warm day of the season so the mood in town is very festive.
Random graffiti that makes me smile every time

Sidewalk art sale

Checking out Halloween decorations

Ahoy

Given their age gaps, these three play really
nicely together. Sometimes. 
4:34 - I've made the ill-advised decision to stop at the supermarket on our way home. It's been a busy day for everyone and my patience is nearly bottomed out. The boys screech at each other in the cart and B sits up on the handle yapping incessantly in my ear. I am the epitome of snappy-yelly-grouchy mom and I wish I'd thought harder about putting the trip off. I did buy some ice cream though, to make it worth it.

Perfect fundraising strategy for someone who appreciates
round numbers/even amounts. Yes please. 



5:30 - Home and the usual whirlwind of unpacking groceries, letting the dog out, feeding the dog, feeding the kids, etc. After dinner I send the big kids down to play while I do bath and bedtime routine with Archer. I am so happy to have reached the place where I just snuggle him with some milk, then plop him in his crib and say goodnight. I'm pretty wiped at this point and grateful I don't have to coax an infant to sleep.

Nearing the finish line!

7:00 - Eat a quick dinner while the kids play and then hustle them through a quick evening routine. We read a couple of stories all together and Pacey goes to bed, then Brighton and I read a chapter of Ramona the Brave. He doesn't have the attention span for it yet and also gets up earlier than anyone else so is ready for bed sooner. Reading chapter books with B has become one of my favorite times of day. She's actually quiet and still for once, and she is so enjoying the books I loved myself as a kid.

7:45 - Lights are out and I head downstairs to clean up the kitchen and yet more trails of detritus. I think about having a glass of wine but decide I'm too tired and have some ice cream instead. I start my new book (One Plus One by Jojo Moyes) and read til I'm drifting off. More than an hour of uninterrupted reading feels like such a luxury.

10:00 - Exchange a quick text with C and I am out for the night. Archer wakes briefly at 2:00 but settles back to sleep before I have to go in. I don't hear a peep from anyone else until 7:20 am and I therefore decide to buy them each a pony.

The End!

Thursday, October 9, 2014

Some Things About My Baby

I've said it before, I'll say it again. I'm so thankful to have had the chance to parent Archer. It has been such a radically different experience in so many ways, some of which are healing in that I know at least some of my struggles parenting the first two through infancy were more to do with circumstance than personal shortcomings.

Archer is almost 15 months. Now that we've passed through the magical 12-month "finish line" of what I find to be the most difficult period, time feels like it's flying by. He finally decided he would like to start walking at 14 months and hasn't looked back. He conquered the stairs awhile back and I'm pretty comfortable letting him have some freedom to explore the house.

He is both impossible and effortless to entertain. He is perfectly happy to merrily follow me around, undoing whatever task it is I'm attempting to accomplish. He loves to "help" but mostly creates three times the mess I am able to tidy up in the same amount of time. His attention span is virtually non-existent, so trying to get him to play with something and stay out of my hair is completely futile. In a lot of ways I don't really know what to do with him. We started the library storytime which he loved, and I loved, and I'm attempting to leave him for periods of time in the gym daycare.

Funny story about that gym daycare. I had a gym membership to Fancy Gym when Brighton was...oh, right about 15 months. I looooooooved everything about Fancy Gym except for one small detail. They had a policy that if they couldn't soothe your screaming beast within 10 minutes they would call you to collect said beast. I don't think I finished a single workout ever. I just quit the gym, fearing I'd never have any time to myself again. Fast forward four years and somehow I think it'll be different. The first day went ok but it's been downhill since then. I have much more staying power now and I know that this is a particularly difficult age for separation, so we will persevere. Homeboy LOVES his mama.

He loves nothing in the world as much as he loves being outside. He stands at the door begging to go out. At this point he has almost no words yet so his method of indicating desire tends to be pointing and grunting/shrieking/yelling. He needs nothing to entertain himself outside, just dirt, rocks, sticks and endless space to roam. I love that about it and yet, selfishly, I find it frankly sort of mind-numbing to follow him around making sure he doesn't find piles of dog poop we've missed in our clean up.

He's a very adventurous eater for now, although this is not my first rodeo and I fully expect by age two he will be down to three or four foods he will accept. He requests, nay DEMANDS, he try everything I might be eating in front of him. The latest favorite is hummus, which he both eats and spreads liberally over his body like some sort of skin care regimen. Who doesn't love a baby that smells like garlic?

He firmly believes he is entitled to participate in any and all activities the big kids are engaged in and LOUDLY expresses his displeasure if he is disinvited. Trying to do homework with Pacey and Brighton while he is around is an exercise in patience to say the least. He is energetic, adventurous and generally, incredibly cheerful and good-natured.

I love him. I adore him. I kiss him one million times a day and then I throw him in bed at  6:30 pm because he has worn me out. He is the absolute perfect finish to our family.

Monday, October 6, 2014

Awareness

Before Pacey was born I wasn't really aware of Down syndrome. Sure, I'd seen Life Goes On, and there was a person a couple generations back in my family who I knew had had Ds, but I wasn't exactly aware. I knew it existed but beyond that? Nada.

I attended first grade at a montessori school that provided special education services to children with (I'm assuming) more significant disabilities. It was equipped to provide access for children in wheelchairs, that much I remember. I don't recall having a lot of contact with the children receiving special ed services, although I believe each of my siblings may have had more experience there. Beginning in second grade, I was actually the recipient of special education services by way of a program for gifted (hate that descriptor) learners. It was housed in a different school than I was zoned for in my neighborhood, but I was transported via bus through special education provisions. I rode the proverbial "short bus" to a bus depot where I got onto another bus that took all the kids in my program to our school. I rode the bus, therefore, with children qualifying for special education services for a number of different reasons. I don't remember much about it except for a child whose behavior made me really uncomfortable and no one talked about why.

I am utterly ashamed to say it now, but at least through high school and very likely beyond, I used the word "retard" as a pejorative term. I enjoyed humor at the expense of people with cognitive disabilities. I consider myself to be a sensitive, kind and educated person and still. That was my behavior because I wasn't truly aware.

When my baby was diagnosed with Down syndrome I was blindsided by the very fact it had happened (to ME?) but I also had zero awareness of what it really meant. I was completely unaware of Down syndrome as a contributor to the diversity in my community. I think I've written before about the fact that in Southern California, even with my hyper-awareness after Pacey was born, I just didn't see very many people with Down syndrome. This became much more obvious after we moved to Minnesota and I began seeing people of all ages absolutely everywhere. I made connections, have made some of my closest friendships, and have seen many amazing things accomplished by people with Down syndrome.

The awareness goes further than that, though. I've become aware of the existence of all different types of disabilities and how they affect both their bearers and their families and communities. Pre-Pacey, I'd never have felt comfortable approaching a child (or adult) with a visible disability and engaging them. I think, if I'm being honest, disability may very well have continued to exist in the very periphery of my world vision. I am so grateful for how my community has been "unlocked" in this way for me. I'm aware and therefore I can teach my kids to be aware, going far beyond just Down syndrome, of differences and acceptance.

It's never too late to become aware, and I guess that's why I, like many other people whose lives are touched by Down syndrome choose to blog during the month of October. Awareness made me an immeasurably better person and I think it can do the same for others.

Sunday, October 5, 2014

Weekend Report

Busy weekend around here. The temperatures plummeted from 80s to 40s over the last week so it was time for some fall prep work. Leaf raking and mulching, storing all the summer toys and furniture, etc. Chris is working on insulating the two unfinished rooms in our basement to try and keep it a little warmer this year. I hauled out the bins of winter clothes and honest to god, it feels like yesterday that I finally trusted the spring weather enough to wash and store them. I am not ready for the cold again. But! I am determined to do what I can to be comfortable and therefore not dread/hate the winter so much since it comprises around 50% of the year here.

Brighton had her second-to-last weekend of soccer and Pacey started basketball. He's doing skills clinics through a group organized by a fellow mom of a young man with Ds who was bummed there wasn't an option for basketball. It's such a fun program, and Pacey LOVED it. The buddies tend to be the girls' high school basketball team which is juuuuuust fine by my little ladies man. Wonderful girls, and use great skill in helping the kids without babying them. Both kids have had such positive sports experiences so far and I'm glad because - confession - I find most of it really boring. I think I'll enjoy it more when they get a little older and more organized/skillful but for now it's hard not to consider all the other things I could be doing with the time.

We had dinner with friends last night and it was wonderful. Delicious food and our pack of five kids roamed the house playing and needing minimal input from us. They have a son a year older than Archer so we are just now, for the first time in our friendship, in a position where no one is pregnant or dealing with an infant. Party time.

We're all home now, football on the tv, Indian food simmering away on the stove, dry English-style cider in the fridge waiting to be poured. Not a bad way to end a weekend.

Friday, October 3, 2014

Pacey Lately

I don't think much about Pacey having Down syndrome right now. I feel like he's in kind of a sweet spot...besides speech therapy there isn't much we do "differently" with him. He has a wide social network, only some of which has been crafted by Chris and I. His school has an excellent social facilitation program and he has made some wonderful friends. He functions, he's learning and he's progressing.

He has really nice manners, enviable posture and a hilarious sense of humor. He still needs some downtime at the start of his day and periodically throughout. He continues to be iPad obsessed and will come up with some incredibly creative ways to get to it if it's out of reach. He's compliant in general although can be as stubborn as a mule. He goes to school, comes home to tell me about his day and will start playing basketball again this weekend. Sometimes he says things that blow me away with their insight.

Once again, I wish I could have had just a glimpse of nearly-eight-year-old Pacey in the dark days and months after he was born. Not so much because all of the things he can do, but because of who he is and, even more, who he has made us. Our family is closer and richer because of him.

I included this photo because baby Pacey is wearing exactly the same cheesy
grin that his little brother gives us








Thursday, October 2, 2014

All I Really Need to Know I Hear From My Kindergartener

It comes as no surprise to me that I am enjoying the time I have with the big kids significantly more now that we have some time apart. I, like many moms who choose to work outside the home (as well as some who don't), believe myself to be a better mother when it's not my full-time job. That's not how it's worked out for us, and I am so relieved to have reached this point where I get the space I need and can be that better mom.

What I didn't anticipate is quite how much I would enjoy hearing about the school day. Up until this year I haven't really gotten much from Pacey. The staff that work with him have been fantastic in keeping up the communication log and share written details from his day with me that can serve as a jumping off point, but even then it's primarily a question-and-short-answer session. This year he's blossoming into quite the conversationalist and I'm hearing much more about his days unprompted which I appreciate for many different reasons.

But Miss Brighton is a different story entirely (pun intended). As she makes her way down the bus steps she is often already starting to recount the day..."MOM. You will NOT guess what happened today." And I love it. I love every single detail she shares. I love that she has a space now that does not revolve around me; I'm a listener by nature and I'd much rather hear about all the things that have occurred in her day than discuss the latest developments in Equestria.

A sampling of things I have learned in the month or so of school we've had so far:

* There's totally a naughty kid in her class. He is frequently in trouble and she likes to go into detail about his transgressions of the day. It makes me so happy that thus far I have not had to deal with behavioral issues at school (and lest you think I'm tempting the universe by being smuggy smug, something tells me that Archer is going to be a bit of a wild card anyway)

* Just because a child makes it to the bathroom before they throw up doesn't mean they do it in the toilet (all hail the school janitors)

* There is at least one kid who cries per day in kindergarten (all hail kindergarten teachers...they do NOT have an easy job)

* Even in kindergarten there is drama about who will sit with who at lunch

* Rock Paper Scissors is the game of choice on the school bus

* There are two kids in B's class named Emmett and Lucy and "they will make a good husband and wife because their names are the same as in the Lego movie."

* Emmett is the friend B talks about the most so far and he sounds like a nice kid. I hope she will continue to be friends with boys.

* Swinging on the monkey bars is quite a lot like swinging on vines in the jungle (she doesn't know how to swing on vines, apparently, but HAS conquered the monkey bars).

* At least one child needs to visit the nurse for some reason or another pretty much every day (all hail the school nurses of the world).

* My lovely, adorable daughter is 100% a teacher's pet. I foresee some gentle guidance in the future towards following the rules herself without being a goody-two-shoes about it. For now I'm reveling in the fact that she's an excellent student.

 I know that typically as kids get older they want to share less about their lives with their parents, and while I still feel like that's beyond improbable with my chatterbox, I will nonetheless soak up all the minutiae while it's on offer.