My mom is pulling her hair out over switching to a new laptop and Windows 8 at the same time. So far, she’s not impressed by the change! Plus, her old computer isn’t talking to the new one very well. On top of all this, she lost her camera! She feels like she’s trying to walk down the street by hopping on one toe while lost in an unfamiliar neighborhood. And when she asks someone for directions, they speak in a language she barely understands. My oldest brother Joseph is really good with computers and has two jobs programming them for almost seventy hours a week now, but Mom stinks at computer stuff!
So I get a turn to blog for a change. I have lots to tell you, and I’m not as picky as Mom about saying it just the right way, so this will give her a break.
The calendar says it’s spring, but it’s still acting like winter around here. There aren’t any flowers or green things growing outside yet. This winter, I haven’t enjoyed going outdoors, even when we went to a cabin in the mountains for a week. I don’t like cold weather, and start to cry if I’m out in it too long. It’s been a muddy, gray winter here without any good snowstorms, so I haven’t missed anything fun by staying cozy indoors.
Speaking of crying, guess what I’ve learned to do?
I didn’t cry to tell people I’m sad until I was home for a whole year. Before that, I only cried when something hurt very, very much, like getting poked with a needle too many times in a row. If I was ever upset about something, I chewed on my wrist.
On Thanksgiving Day, I cried for the first time just because I was sad about something I didn’t like, and wanted to tell my family. I knew they could fix it for me.
Mom sees it as a big sign of progress toward emotional health that I am expressing appropriate emotions in an appropriate way. Even though she doesn’t have any crying pictures for me to show you.
Oh yes, here’s more progress. My family has noticed that I’m getting pickier about food. Do you know what that means? Only prosperous people have the luxury of being picky about food. My pickiness is saying loud and clear that I am feeling all the way secure that there is plenty of food, more food than I need, all the time, and I don’t have to worry about being hungry any more. So Mom is happy that I’m picky!
Hmmm, let’s see what else.
Did you know Tommy had a birthday almost two weeks ago? He’s sixteen now!
Here’s something I did to celebrate–made a flag of Tommy’s country!
Mom helped me spread glue on the paper and then tore pieces of tissue paper for me to crumble up and press onto the glue.
I needed red, green, and white for this flag.
I’ve done this kind of project many times since school started in September, but Mom always had to make my hands do what they were supposed to. She calls it “hand over hand.” What makes it hard for me to learn fine motor skills is that I’m very easily distracted by all the noises and the feeling of the different textures, and that’s what I notice the most. I’m still easily over-stimulated, and have lots of little restless hand and mouth-related habits that distract me, but I’m making progress. Mom has to calm me down over and over again so I’m free to focus on learning skills.
I’ve also been working so hard on my new gross motor skills that I haven’t been progressing in other areas. Mom knew this could happen because of my limited physical, emotional, and mental energy, so she didn’t panic when I stopped trying to talk or making much progress in other areas. She just kept giving me input anyway.
So was she ever thrilled on Tommy’s birthday, because for the very first time…
…when she let go of my hand, I didn’t throw the paper down right away. I crumpled and crumpled that tissue paper, all by myself!
I have a lot of trouble with hand-eye coordination, and still need lots of prompting to get me to look at what my hand is doing. I respond well to auditory cues, so Mom taps on whatever she wants me to look at, and that usually works.
This time, I did a little better! I looked at what I was doing more than I used to!
I didn’t get restless and tired of it quickly, like had before, although Mom did have to help me calm down every so often when I got over-excited.
Here I am starting on the green stripe.
Mom just got prouder and prouder of me, because…listen to what else I did!
I tried to drop the paper in just the right spot instead of just shaking it off my hand when I stopped tolerating the feeling of it!
She helped me pat it onto the glue so it would stick tight.
When she took her hand away to see what I would do, I gave it a few pats myself!
Oh my goodness, she got so excited and called to everyone around her to tell them to come see what I was doing!
I’m not sure who was happier, Mom or me!
Did any of you notice that I was only using my right hand?
Want to know why?
Because Tommy’s birthday came when I was getting my fifth IV treatment for my osteoporosis. This time I was paying a little too much attention to the IV site and splint and tape and port that Nurse Donna always rigs up for me. So my family kept it all taped up inside my sleeve. That used up lots of tape in three days but worked pretty well.
It’s so much better being able to get the treatments at home than having to sit at the Clinic or in the hospital for all those hours!
Especially because I can still do all kinds of other activities the whole time! Like celebrate Tommy’s birthday…
…with my family. Mom’s sorry she didn’t get photos of my younger brothers with their paints or Jane icing the chocolate cupcakes with green mint frosting!
Thank you, friend D, for sending all the pretty martenitsi! They helped make Tommy’s birthday celebration more special!
Want to know what it looks like for Mom to calm me down? Well, it looks different at different times.
Most of the time, it’s good for me to move, move, move. But once in a while I have to sit still and quietly, like during the prayer time or sermon on Sunday.
What helps me most then is a weighted lap blanket across my lap and legs. Did you know that deep pressure is soothing and calming? Dad or Mom tuck my hands under the blanket and hold me snugly in their arms. They have little tricks to distract me if I start to get too loud. That usually lasts pretty well, although I always spend the last bit playing in the nursery with Mom, where we can hear the rest of the sermon over the intercom.
Sometimes I only need to sit still, but don’t need to be quiet. I’ll show you what it looked like while I was getting my hair trimmed recently. The feel and sound of the snipping scissors and the rustling of the cape was very distracting to me. I’d start to kick my feet and wave my arms and make noises.
Mom’s giving deep pressure input to my legs to remind me not to kick them, and saying, “Calm down, Katie,” in a slow, soothing, sing-song way, just like my family does every time I get over-stimulated.
See me listening? It really works to help me calm back down.
This was the first haircut I ever got without a second person to help hold my head still. It was the first time Mom tried putting me on this highchair and having me wear the smock. I don’t understand what Mom’s doing when she cuts my hair, but I’m making progress in tolerating it anyway!
Do you see why Mom kept praising me for doing a good job? It might not look like a big deal to most other people, but to Mom it is!
I’m learning something else I want to tell you about. I’m making the connection between a three-dimensional object and the two-dimensional image of the same object. Mom taps one, then the other, while saying its name.
Here I am patting the card like I saw Mom do. She’s saying, “Drink. Drink.”
Mom had a video of me climbing up the stairs. It was all ready to be uploaded to Youtube and posted here for you to see. But she can’t find it and access it yet, so it will have to wait for some other day.
She wanted you to see some of the immense progress I’m making in gross motor skills!
I’ve been watching Verity walk for a while now, and my family thinks that’s helping to motivate me. Verity’s working on balance, coordination, strength and endurance, as well as skills like kicking, turning corners, and stepping up, down, over, and across. She can even walk sideways and backwards now. Here she’s wearing a big brother’s boots so she has to work harder to walk.
When she walks on these tiles, she automatically narrows her base of support rather than having a wider gait (walking with her feet further apart to help herself balance more easily).
It all just looks to me like something fun that I want to do. I’m sorry I don’t have more pictures to show you all the amazing progress I’m making in gross motor skills, but I can tell you that physical therapy is my favorite! My mom calls me “motor-driven!” My physical therapist sees progress every single time she visits! I first pulled up to standing on October first, and it’s unbelievable how much I’ve learned to do since then! I know that standing alone without support is my next big goal, and it makes me laugh when I do it for one second and Mom tells me, “Good standing, Katie!”
Maybe soon Mom will have her computer act together and a camera in her hands again, and then you can see it for yourself! [Did I just hear her say, “Grrrrrr?” Surely not!]
As I get more mobile and more independent, my family is seeing me enter the next natural stage and get more of a mind of my own. Some part of me must have reached eighteen months old! That’s how old all my siblings were when they started to ask, “So what if I don’t?” Hee hee! I’m easily re-directed and not stubborn, though.
Mom has something else to show you once she’s able to. After a six-month break from trying to talk–at all!–while focusing hard on gaining gross motor skills, I’m working on mimicking sounds again! Oh, the joy! My brothers captured this on video a few days ago, on my eleventh birthday.
Speaking of my birthday! Yay! Time to show you some pictures of my birthday!
I had no idea what my birthday was all about, but my family sure had fun working together to make it special!
Here the party is about to begin. Mom wanted to capture photos of the matching clothes our friend M gave to Verity and me. Thank you, friend M!
I always wake up with a smile on my face, but Verity…um…takes her time to get there.
“Verity, where’s your happy face?”
We played the piano while we waited for Grandpa and Grandma to come.
I was more into it than Verity was.
I just love playing the piano, and never, ever get tired of it!
The pictures of the Bulgarian flag cake didn’t turn out well, but that didn’t stop me from enjoying every bite! Laura and Peter made me a scrumptious carrot cake. It was the most dessert I’ve ever eaten!
I was unsure at first what was going on, and before I’d opened my last few gifts, I was getting cranky due to being tired and eating too much dessert, ahem.
But I caught on quickly to pulling the paper off the packages Jane and James and Grandma had wrapped for me.
I also caught on to the fact that something I liked was inside each one, like books, a Leapfrog Fridge Phonics toy, bubbles, some Melissa and Doug food cutting sets and a Melissa and Doug set of musical instruments, a new, smaller xylophone, and a set of squeaky mama and baby ducks for the bath.
Remember when I turned ten a year ago? I still had a feeding tube. And I sure wouldn’t have tolerated a party like this for long.
A little over sixteen months ago, I was just taking the first baby steps on the journey of learning to really live instead of just survive.
It’s hard for my family to imagine where I’ll be when I turn twelve next year. There’s a lot I don’t understand. I don’t know what “turning twelve” or “next year” means. But I do know this. I’m happy to belong to my family and I’m happy to be alive!
“The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”