Blogging Special Needs

blogher pals

I don’t typically think of myself as a “special needs blogger,” which is silly, because I totally am.

But that’s probably because I don’t always think of Atti as having “special needs.” I mean, of course he does, but when people ask me how Atti’s doing, my answer is always, “Great! He’s an awesome little guy!” Only later do I think to tell them about his progress in therapy or what our next milestone is.

This whole special needs business is pretty funny. Parents of typically developing kids are so often terrified by our reality, but the truth is that we’re often terrified of each other’s realities too. The fact that Atti might never walk and I will be dealing with diapers for a very long time makes some people quake with fear. Meanwhile I drink in every hug and kiss and lie awake at night thinking about what a mom of an autistic kid might do without them.

Then when you start advocating for your child and fighting over the tiny scraps of funding and resources, those fears can become wedges. If you have a child with motor issues, panic and fear can make you think that a sensory integration disorder is a luxury. If your child has a sensory integration disorder, walking doesn’t seem as important as being able to get through the day without screaming.

That’s something that really came out of the BlogHer Special Needs miniconference in a big way. Right now funding is threatened in every state, school boards are reluctant to dedicate a significant portion of the budget for special programs, and disability rights still have a long way to go. If you think that disabled access isn’t a problem? Try taking your child in a wheelchair through New York City, or an amusement park, or even down your street. My town doesn’t have sidewalks on many streets, and even those are often not maintained. Try to push a toddler in a wheelchair over concrete uprooted by trees or up and over a curb because there isn’t a ramp for access.

The need is great, but we can’t allow that to separate us. Parents of kids with special needs have more in common than what differs. I need the mom of a kid with Down’s Syndrome to fight for Atti to have access to a bathroom that fits his chair, and I’ll advocate for her kid to get educational access, and we’ll all fight against hate speech.

The needs of the kids might be different, but the needs of the parents are all the same. We need support, we need encouragement, we need someplace to put the frustration and fear we feel, we need someone to understand all the beautiful little milestones along the way, and that our lives are not tragedies. I found that at BlogHer, and I’m so grateful I did.

Read what some other attendees learned from the conference.

Atti the Gleek

Tell me this kid isn’t a musical prodigy. Look at Atti showing his mashup skills. He started off with “I Am Like a Star Shining Brightly,” went into “Twinkle, Twinkle,” back to “Shining Brightly,” into “I Am a Child of God,” back to “Shining Brightly,” but this time with a key change, added a little soul to “I Am a Child of God” before breaking it down with “Head, Shoulders, Knees and Toes,” and bringing it all back around to where he started with the last part of “Shining Brightly.”

Personally, I think it’s inspired.

Oh What Do You Do In the Summertime…

Atti the Cowboy

The title of today’s post comes from a kid’s song we sing at church.

Oh, what do you do in the summertime, when all the world is green?
Do you fish in a stream, or lazily dream on the banks as the clouds go by?
Is that what you do? So do I!

Oh, what do you do in the summertime, when all the world is green?
Do you swim in a pool, to keep yourself cool, or swing in a tree up high?
Is that what you do? So do I!

Oh, what do you do in the summertime, when all the world is green?
Do you march in parades, or drink lemonades, or count all the stars in the sky?
Is that what you do? So do I!

Our summertime is not exactly looking like that. Our summertime involves Sesame Street marathons, aimless internet surfing, cranking on the thermostat, and silly clapping alphabet games I make up so that I can feel like I did some mothering in a day.

Honestly, I’ve been at a bit of a loss. Atti’s either too young/uninterested/unable to participate in the typical summertime activities, and all he is interested in doing is an indoor thing. Except driving. He loves to drive around, but the AC in my car is going and it has been wicked hot here lately. So I’ve had to choose between keeping cool, or feeling like a “good”, fun, active mom.

When I was a kid I hated summertime. I didn’t like being hot, I didn’t like being dirty, I wanted to sit in a cool room and read my books. I probably shouldn’t be mad at myself if my kid’s turning out the same way, right?

And yet, every time I ask Atti if he wants to go outside he cheers. So I spread the blanket and grab some books and then he refuses to open his eyes in the sun, or screams at the touch of the grass, and we’re back inside before I even settle down. He’s like a dog that wants to be let out right until he’s let out.

So we’re back inside now, laying under the ceiling fan and watching more Sesame Street. But at least it’s educational, right?

Yo Gabba Gabba Quilt for Davy

Davy's Yo Gabba Gabba quilt
My quilting streak continues, this time for a very special little girl and her mama who needed to be shown how many people were cheering them on.

Ruth is an old family friend. My mother-in-law is best friends with her mother-in-law, Bear and his siblings grew up with her husband and his siblings, when we were very first married and I was still planning on being an actress, we even helped out with her husband’s wedding video business.

Since then we’ve all gone off in a bunch of directions, but stay closely connected through this family network. Ruth’s husband is one of the creators of Yo Gabba Gabba, and the one responsible for the fun we had when we went to the live show.

Davy was born with some significant challenges that have led to surgeries and medications and serious medical bills, so all her friends and family got together to throw a benefit. I couldn’t attend, but I wanted to contribute something to the silent auction so I busted out a few of my favorite techniques and made a Yo Gabba Gabba inspired quilt.

Yo Gabba Gabba quilt
The fabrics are all old Amy Butler favorites I had left over from other projects. I hoard her fabric, so I had just enough of different pieces to make a crib sized quilt. The colors couldn’t have been more perfect. Totally girly, but with a big bite of acid.

Yo Gabba Gabba quilt
And because I can’t stop myself from machine appliqueing, I made a center panel with a message from the show. I downloaded a Yo Gabba like font and drew a flower like Foofa wears, and used this sentiment that comes from a song Muno sings when he’s too afraid to go to sleep.

They were looking for items to be auctioned off, but the whole time I was working on this I had little Davy in my mind. Being a mom of a kid with special needs is wonderful and hard and often lonely. I wanted to show Ruth solidarity, I wanted to lend Davy courage. I wanted to wrap them both up and tell them to not be afraid, that their lives won’t look like other people’s but they will be rewarding and full of love, to welcome them into a network of people who learn a whole different way of finding value in people and in life.

The quilt never made it to the auction. It’s now keeping Davy company in her rocking chair, which is exactly how it should be.

Atti’s little lunchbag

Vinyl Lunchbag
Now that Atti goes to school everyday, I’ve joined the army of moms who make lunches. Although, I only barely qualify. He really only gets a snack at the end of the day, so instead of making sandwiches I’m collecting a piece of fruit and some crackers. But I have aspirations of sending better, fresher stuff, and that fresh stuff gets messy. So I needed something besides the front pocket of his backpack. Something that could be easily wiped clean.

The construction for this is similar to the Rustle Bag I made years ago. It’s just a simple square-bottomed bag you can make to any dimensions you want, but here’s how I did it.

Lunchbag Step 1
Out of two complimentary patterns of vinyl, cut:
the body piece – 7″ x 29 1/2″
2 side pieces – 4 x 12 1/2″

Make sure you make each of these cuts out of each piece of vinyl so you have all the pieces for the inside and outside of the bag.

You’ll also need a piece for the front pocket. Mine measured 4″ x 4″, and a piece of velcro cut 2 1/2″ long.

Lunchbag Step 2
Sew your pocket on the front body piece by zig zagging around three sides, roughly 8″ from the top.

Lunchbag Step 3
Then sew one half of the velcro piece about 2 1/2″ from the top of the front piece…

Lunchbag Step 4
and sew the other half of that velcro about 1/2″ from the bottom.

Lunchbag Step 6
Next we have to make the handle. You can use any fabric you want, using whatever your favorite method is, but I had this great green ribbon that worked perfectly with my colors. I cut it to about 7 1/2″ long, folded it in half, folded in the raw edges on the end, and sewed close to the edge and then down the middle to stabilize the whole thing.

Lunchbag Step 7
I positioned the handle about 3″ from the bottom of the front piece, so that when you bend that piece into place the handle will end up on the back. I used a little glue dot to hold the handle in position while I sewed a square shape on each end to make it super strong.

Now all of the external pieces are in place so it’s time to build the bag.

Lunchbag Step 8
We’ll be making the exterior and the lining in one big seam, so lay the interior body piece and the exterior body piece, wrong sides together. Do the same thing for one of the side pieces, and then lay the side piece on top of the body piece, interior pieces together, lined up at the top and sew down with a 1/4″ seam.

Lunchbag Step 9
See how when you open that seam you see the lining fabric together? It’s a bit complicated to explain sewing through the four layers at once, but if I’ve been unclear you’ll get it as soon as you have your pieces in front of you.

Lunchbag Step 10
Now we’re going to turn the corner to create the bottom. Make a snip in the body piece just above where the stitching ended and bend it around to line it up with the bottom of the side piece. This takes a bit of wrestling, but it will work. Make a snip in the next corner, and go right back up the other side.

Lunchbag Step 11
With all that bending and wrestling, things can get uneven at the top. So just give it a snip to make it even, then zig zag each side. I ended my zig zagging at each corner instead of just going all the way around because it keeps those seams still standing out comfortably instead of being smashed down and stitched over.

Vinyl Lunchbag Back
This is a simple project that loads of people had versions of, so I thought hard about what changes I wanted to make before I got to work. My measurements are a bit bigger than a regular brown bag, the handle gives an easy option for my little guy who will need a bit of help here and there, but my favorite idea was the pocket. It’s just big enough for some milk money, or, as I’ve already used it, a check when he just wants to eat whatever they’re having at the cafeteria.

{editors note: I had this scheduled to go up last week before the big blogger meltdown. Sure enough, in the time between then and now Martha posted her own version. Martha!! Blogger!! :shakes fist: Great minds and all that, but I still like mine better.}

The Wheels on the Bus Take My Baby Away

Atti rides the lift
The big day finally arrived. After months and months of waiting for red tape, and insurance baloney, and meeting with all the people who had to give approval, we finally got on the route to have Atti bussed to school. It’s a day I’ve been looking forward to bittersweetly, knowing it would be hard to watch him go off without me, but also excited to have more time to myself and less driving all over the place.

Atti on the bus
The morning did not go exactly as I planned. We sang wheels on the bus and talked about what would happen and all the friends he would see, and then, Catastrophe. I wheeled him out the front door to wait for the bus, turned around to grab the camera and Atti rolled off, hit the grass, and rocketed forward right onto his face.

I freaked right out and raced to pick him up, and right then is when the bus pulled up. I tried to coo and snuggle to calm him while Bear wiped the blood off of his lip, but the busdriver was unfazed. He just went about his business strapping in while I frantically sang songs and snapped pictures and acted happy and Atti screamed. He just said, “Don’t worry, he’ll get used to it,” shooed me off the bus, and drove away.

My baby going off without me
I went inside all teary, paced around the house for an hour, snacked on food I didn’t want to eat because I didn’t know what to do with myself, and finally settled down for work. Just in time to get a phone call from Atti’s teacher telling me that his face was covered in fresh scratches and that he wanted to make sure I knew nothing happened at school. I wanted to crawl in a hole. “no,” I told him, “I did that.” Oh the shame!!

He made it home!
He made it home in one peace, shouting “Buh Bye!” to the busdriver as soon as he saw me. He seems to have made it through his harrowing morning without a crippling life long fear of riding the bus. The busdriver told me that every time the bus went over a bump or swayed from side to side, Atti would burst out laughing. Laughing with every bump in the road. Is this my kid, or what?

Zoo Day

Atti at the zoo

I finally managed to harass Bear enough to take a day off of work during the last week of Atti’s school break, so we decided to make a day of it and go to the zoo.

Giraffe

It was our first big expedition with the wheelchair, so as we were buying tickets to get in I asked the cashier about their disability access. He looked at Atti in his chair and said, “Oh! Hang on a second!” and rang us in over again. I never would have thought to ask, but we got a major discount! Atti’s ticket was cheaper, and I got in for almost nothing as a “caretaker” discount. Super A+ Sacramento Zoo!

Flamingos

My duties as caretaker mainly involved pushing the empty chair around while Bear carried Atti everywhere. In his chair he came right up to handrail level, so he was missing out on most of the sights. But with his dad he had a great time looking at the funny, smelly, birds.

carousel

But really, all he wanted to do was ride the carousel, which was of course not included in the entry fee. As soon as he saw it, he could not be dissuaded. He didn’t really want to listen to me trying to take a teaching moment to talk about waiting our turn. Instead he just wanted to yell at the people standing in front of us. But I suppose any communication is better than none, right?

A Boy and His Bike

Bike
Atti has all kinds of wheels now! We got this little bike for him at Christmas time, but we haven’t used it much. Then our OT helped us adapt the pedals to keep his feet strapped in and now Atti has a bike that’s secretly a therapy tool.

Bike riding with dad
It seems so important for every kid to have a bike, but the one’s that are adapted for kids with disabilities are crazy expensive. Like, you could get a car for the same money. We found this one at Costco of all places. We couldn’t believe our luck. Along with a whole bunch of safety harnesses, it also comes with that caretaker handle on the back so we can push Atti. And then best of all, as we push him the pedals go round and round and it teaches him how to move his legs.

Boy on his bike
It’s amazing how grown up he looks. My baby is totally a kid.

Jump!

Jump!
Last weekend we got together with some long lost friends for a BBQ. A couple of our friends moved back to Canada a few years ago, so now we have to content ourselves with the internet, and the rare visit where all the people who love them fight for time. We were lucky to get a whole afternoon.

Since the last time we saw them there have been new additions to families and kids have sprouted up so that they’re almost unrecognizable. We tossed all the kids inside the trampoline and enjoyed our time to catch up.

Trampoline with the kids

The other parents were worried about Atti getting hurt or stepped on, but I just tossed him right in the pile. I figure that kids are supposed to come home with the occasional bruise. This is Atti’s chance. The kids are just awesome because instead of being weirded out or overprotective they just asked, “What’s wrong with his feet?” and I told them that he was born too early for his brain to tell his feet how to move, but the rest of him was just like them.

Static Hair
Atti giggled and shouted “Bounce! Bounce! Bounce!” while the kids jumped near him. And I tried not to cry as I saw my little guy included by his friends.

A Place for All Those Little Pieces

Toy Sack
At Atti’s birthday party a couple of months ago, he got a bunch of really cool presents that have been sitting stacked in their boxes in the corner of the room ever since. We’d pull them out to play with them, and then I’d put everything back in the giant cardboard box so that the little pieces didn’t end up lost under couches, or mixed up with other toys, or, and this is the most likely, swiped by kitties looking for something to bat around.

But those cardboard boxes were just not cute, and started to discourage us from even playing with the toys at all. It was time to come up with a way to keep things together, that didn’t involve making my house look like the stockroom of a Toys R Us. These little linen sacks are cute to look at, and are the simplest things to make, ever.

Toy Sack Step 1

Fold a piece of fabric in half and cut so that it’s big enough to fit all the little pieces you want to put inside it. Be generous here, better too big than too small.

Toy Sack Step 2
I drew a little image to identify what was going to be in the bag, and cut it out of another fabric. Clip art is another great resource for this. Iron it onto fusible web, and then iron it in place on what will become the front of the bag.

Toy Sack Step 3
The fusible web gets it good and stuck, so it’s tempting to stop there, but it will eventually peel up if you don’t secure the edges somehow. For this bag I used a glitter fabric glue since it was absolutely the easiest thing ever.

Toy Sack Step 3.5
I also tried treating it as a regular applique and doing a zig zag stitch around it, but my machine hated the cheap fabric I was using so I gave up after one attempt. But long term readers know how obsessed I am with applique, so if I wasn’t making this on a bad allergy/low patience day, I totally would have gone this route.

Toy Sack Step 4
The super cheap fabric I was using was a fraying nightmare, so I made sure to zig zag all four sides. Then sew the sides up to make your bag shape.

Toy Sack Step 5
Since I was going for easy as possible, I made a really simple drawstring closure. Fold the top in towards the center about 3/4″ and sew down, leaving a gap open at each side.

Toy Sack Step 6
Then thread a ribbon through the casing and tie a knot to secure it.

A sack for all the little pieces
I remember my dad getting so mad at my sisters and me for how messy our room was, and going through our toybox unearthing lost treasures I’d been looking for for ages. This way, maybe those pieces have a fighting chance of staying together. Now Atti can just look at the front of the bag to see what toys go where, we pull the string and toss the bag in the toybox, and then it’s all ready to be played with the next time.