Saturday, September 28, 2013

Why We Do What We Do

I have already written about how Umberto decided he wanted to do more schooling because he wants to prepare for college. And so far things have been going smoothly. We have not had the struggles we had last year. When I ask Umberto to work, he comes to the table willingly. I have also learned to not be so rigid. If Umberto wants to have a friend over, or if he just bought a Xbox game (cough GTA V cough) then we just rearrange things. Sometimes social studies sucks up more time than I had planned so we don't have time for writing. We just roll with it. Letting go of the stress of having to get things done opens up a whole new atmosphere to schooling for all of us. Things are less angry, less hurried. When plans fall through I don't feel the intense stress of having to get it done. We have time. All the time we need. Because really if we don't finish Math lesson 23 today, the world will keep spinning. Before, I would rush, rage, and end up just giving up.

Now I can see that it was a combination of things. My attitude. Umberto not being ready. So here we are now in just the right spot. And it's not been totally easy. My house is a mess. I feel like the other kids are getting a bit neglected. Umberto needs me to right beside him for most of his work. We're working on independence, and I know it will come, but right now it's a bit confining. The positive in this side by side work is that Umberto and I have become very close. I think it's often the case that a child reaches their teen years, they drift away. It's nice to not find that happening; to have the opposite occurring as we work together.  We can get creative about where school happens as well. So sometimes we do our work on the floor while Jude plays, giving us a few minutes to be together between baby care.

In addition, to our closeness, I've watched Umberto develop new interests. He has ended up really loving history which surprised, I think, us both. And he has learned to take pride in things. The other day he yelled "Yes, a 100 on that the Math quiz!" and it came from him not because we grade or because we even emphasis that kind of accomplishment. But for a kid who often struggles with academic self worth it was a pretty awesome moment. Maybe because it came from his own sense of accomplishment as opposed to pressure from others.

But I think the neatest moment came when Umberto had to build a diorama on a habitat of his choice. He was pretty blah about it, and it kept getting pushed to the back burner by both of us. I knew it was going to take a lot of effort on my part to get him started and since he was not feeling it, it would likely lead to conflict. I thought about just skipping the assignment. I've always though dioramas were kind of boring, and a waste of time anyway. Memories of horribly failed projects from my own child were foremost in my mind. I always had grand ideas that never quite coalesced into reality. 

Still it was his first science project and I thought it would be good to just bull through and do it. We could mark it as done and then decide if it was something worth doing again. So last Sunday night, I found a shoe box, and said "Let's do it." What happened was pretty awesome. Piper and Camille were instantly interested when I brought out the air dry clay. I explained to them Umberto's assignment, and they both wanted to help. Soon we were all sitting on the floor in the living room, the Ipad propped up in front of us with images of coral reefs before us, surrounded by National Geographic magazines and clay. Piper was making sea turtles, and Camille started in on shark. Umberto was looking through the magazines, and talking about making a clown fish. Then we downloaded some coloring sheets, everyone peeking over my shoulders as we scrolled through pages of options. There was coloring, cutting, and discussion.

On Wednesday when the clay was dry so we started to assemble the diorama. At first it was just Umberto and I. Camille came out and wanted to be involved. I stepped back and let them go to town. They came up with creative ways to get the big things in the front, and the smaller things in the back. Umberto used H's wedge idea to have the fish appear to be standing. He also came up with the idea of how to hang the seahorse. Camille made Popsicle stick props to keep the coral upright. 

In the end, we had a group effort. A family created project that arose from something that I was dreading. And it's what I really love about homeshooling. The improvisation. The unexpected fun and joy. 

Monday, September 16, 2013

Months of Joy

There has been a lot of frankly, bad shit, in the news lately. Stories that would have broken my heart before Jude hurt even more so now. And while I weep, I'm also angry. Angry at the unfairness of life. Angry at how the media represents people with disabilities. Angry at how we keep coming up with excuses for why parents kill or attempt to kill their disabled children. Why our kids aren't worthy of heart transplants. It just falls down on me sometimes especially late at night when I can not sleep. I feel the weight of so much pain, so much horror. Our children are worthy, I yell again and again.

But today, I want to write about joy. Joy over nine months of love, joy, average life, and the settling in of another beastie into our family. Nine months ago today, Jude came to us through a fast labor that did take me a bit by surprise. I remember that evening still, a little shell shocked, tentative with this new person who I thought might be so different from me, from the rest of us. I held her long into the night, and fell in love with every bit of her. I cried into her hair, and promised that I'd love her forever. I can still feel the weight of her against me, and the smell of her soft hair will always be with me.

And the love affair continues. 9 months old is a magical age. 9 months in the womb and nine months out. There is a tentative quality to babies, for me at least. I don't really know who they are, and while children are always becoming as we all are, there are some traces to who they are at this tender age. At nine months, I see less of just the baby and more of them. It's been that way with all of my beasties, and it is this way with Jude.

Jude has an amazing personality. She is so complex, and rich. I feel that it will take a life time to know her. The mystery of being is strong when you have children. You always feel that you will run out of time before you know them, and you will because they are always morphing. Reaching new places. Jude is starting this amazing journey. Already I see glimmers of what will shape her.

She is fierce.

Jude growls at us if she's feeling like we're intruding on her space or cramping her style. She doesn't like to have help forced on her, and wants to do things on her own.  

She puts up with my antics, with being my model but she's not docile about it. She'll grunt, makes faces me, basically make it clear that she won't tolerate much more. She's no fool, this little girl, and she's not biddable. A highly desirable quality in any girl.

Jude is sly with her humor. You have to work to get a smile from this girl. But she's goofy on her own terms. She'll make a face, give you a sly grin, invite you to play a little game with her. She is not someone who is always happy though. Jude is not a stereotype, and her humor is so subtle you might miss her. 

Jude loves to play more so than any of the other beasties. She loves her toes but she loves toys too. She has favorites: her balls, a stuffed panda, her little piano. She also likes to play with us. Her brother and sisters are endless sources of entertainment. I like how she engages with them, and how they engage with her. She is so much a part of our lives and the ways she plays with us demonstrates her connection to us. How she is so much a part of us now.

Now at nine months, I am stunned at how I even worried that she would be so different than us. It's funny how we can embrace difference in so many ways but then we act so scared of other differences. Our ignorance betrays us perhaps but really it's no excuse. Because here we are nine months later with this amazing, complex budding human being bursting into midst. And I no longer cry into her which I did for a long time after she was born. I cried not because I was sad but because I felt so awful for the stupid things I believed about what it would mean to have a child with Down syndrome. What becomes clear is that Jude is blossoming into someone amazing just like my other kids: at the same rate, the same pace, but in her own different way. They all had their unique perspectives to bring and Jude is not exception. But the process remains the same. 

Wednesday, September 11, 2013

Drawing No Lines

We are three women sitting on the ground, dirty cement, under the roof of the picnic area. The heat is oppressive but there is a cross breeze that drifts through the open sides. In the middle of our little circle, sit three babies, all girls, all nearly the same age. December babies. Jude is thrilled at these little people in front of her. She stares at them intensely her little head nodding up and down in her effort to concentrate. When one reaches out to pull her hair, she is not so thrilled but really who could resist such a copious amount of hair?

As we chat, I give Jude her chewy necklace. Jude plays with it and naturally the aforementioned other baby can not resist the charms of such a toy. She grabs it, and starts a game of tug of war. Jude is not having it, and she pulls hard, determined to not let the baby have her treasure. The other baby manages to pull the necklace from Jude. Jude lunges forward, growling! She is not giving up her toy without a fight. And it's classic Jude. Nothing phases her. When she wants something, she's going to do whatever it takes to get that something.

I remember when Jude was smaller people telling me that it would be hard to see "typical" babies doing what Jude was not doing. These ideas are planted whether you want them or not and when we first began to hang out at the park again I found myself comparing Jude to these other two babies. One baby was starting to crawl and climb. She scurried over her mom onto my lap for a closer look at Jude who just sat there. And I felt bad. As we made the long drive home, I told H how hard it was to see the baby doing stuff Jude wasn't. H gave me that look. The look that says "Really woman come to your senses now." And I did. Jude's development is just a mute point in our world because we're too busy with Jude to care about charts or comparisons. None of our kids followed a tidy chart, and it's pretty silly to expect that with number five.

Now as I watch Jude fighting for her bead necklace, I realize that not just for us but for these babies and their moms, Jude is just a baby. We are three moms who have babies that we are hoping will get to grow up a bit together. They will be each other's play companions at these park days. Jude is really just one of the gang. They are all different. Different stages, different skills, different individuals come together for some baby fun. (And a little danger evident in the stealing of the teething necklace).

The moment stayed with me as we drove home, and throughout the evening. I kept smiling as I remembered Jude fighting for her little necklace. What hit me later as I thought back to this moment was how incredibly normal it was. It was just three babies having a good time together. Exploring the world where other little people existed. There was no lines that said "This one baby here is intellectually disabled." "This baby here is Hispanic and African-American." "This baby has allergies." There were instead intersections between all these babies that made them alike. And here in this time Jude was quite simply Jude. And this is how life has become for us. Even with therapies and some extra doctors appointments, we are just living in the being of us. Jude is no different than any of the other beasties as we adapt our flow to include her stream with ours.

I no longer think about Jude having Down syndrome all the time. There are days that float by when I don't even think the words "Down syndrome". It's such a minor part, frankly, of who this baby is to us. There was a time when I didn't think I would ever feel this way. I was consumed with thinking about what Jude having Down syndrome would mean in our lives. Before she was born, I worried that it would destroy our lives. I imagined our whole family as dredges to her disability. Then right before she was born and when I held her, I swung to the other side. She was MORE amazing than any other baby. She was a miracle. A gift. More than even the other children. We would become better people under her tutelage. She would show us how to love purely. And then, thankfully, we swung back to a place where Jude is just a human who like us all will have her own challenges and her own strengths throughout her life. But Down syndrome has merely become one small piece in this person known as Jude. Instead we have come to know this tiny person named Jude who is everyday becoming.

Monday, September 02, 2013

Baking Bread

Today, I hauled out the bread maker for the first time in many months. I had not been able to find our favorite sandwich rolls at Trader Joe's so this necessitated me making bread once again. It's not a hard process but it's a long process and time is something that I've been parceling out in tiny increments for too many projects. Bread making was lost to writing, knitting, blogging, homeschooling...and if I'm fully honest, to Facebook, the great time waster. But today it was time to start again, we needed some rolls and I could make them.

Once the dough was mixed, I dump the sticky mass onto a floured cutting board, and began to rip off hunks to set on the pan. I am not a fan of sticky textures but the feel of dough is different. Combined with the smell of yeast and flour, the texture is comforting and warm. I carefully roll each piece into a flat bun and lay it with a firm pat onto the waiting cookie sheet. When there are ten rounded rolls, I take the new soft blue dish cloth from Ikea and cover the bread. The covering is never mentioned in any of my recipes but I remember my mom always covering the rolls when I was little so I cover them.

The next few minutes is spent cleaning up the kitchen. The rolls need a long time to rise, Jude is napping peacefully, and I use the time to wash the dishes, sweep the floor. As I reach for another plate, I see the bread swelling up under the dish cloth, tiny hills pushing their way toward the ceiling. The kitchen still smells like yeast from the mixing process, and I am back to being small. In one of the various kitchens we inhabited during my young years. It doesn't matter which one because the scene is always the same. I can smell the yeast from where I am playing, and I follow the smell, recognizing that not only will be bread soon but that we are likely going someplace fun to eat said bread. I go into the kitchen, to see my mom with flour all over hands, punching bread down and kneading it with her fists. I watch as she begins to shape rolls, and I sidled up closer and closer until I can feel the warmth of her body against my side. Quickly, I reach out and grab a piece of dough. My mom looks down and smiles as I back away with my stolen treasure. I roll the dough between likely very dirty hands, loving the way it feels so warm and the way the smell increases as I make a tiny ball. Sometimes I am content to just play, other times I pop into my mouth and relish the raw yeasty taste that is only a hint of the taste of fresh baked bread.

And then I am back in my own kitchen with a dirty plate in my hand. Touched to the past through a rising up.