Something Behind Everything

There are times I want to run to a PC and construct a solid blog for Miles. Then, I nix the idea becuase I either can't break away or I'm too close to every moment of his life to feel as though they need to be immortalized any more than they are through my witnessing those small moments. Amidst the frustration of not being able to talk, his tantrums, and the constant hair pulling with his cousin Sophie, I find myslef not wanting to write about any of this stuff anymore. I figure it's too hard and painful to plod forward without small moments. Then, I realize that there is a silver lining and it's the small moments of triumph that fuel Carrie and I to another day. For instance, his homeroom teacher Connie emailed me today and said that he has fallen right back into step following a very long Spring Break. She noted that he hasn't pulled hair or been overtly huggy with other kids. And when I pulled him off the bus today, I heard a group of kids in the back yell 'bye Miles' over and over again. As he beamed with his huge smile, I felt my spine tinge in that comfortable manner because somewhere between the pain and pleasure there is this tiny blog wobblilng along out here in the clogged avenues of cyberspace celebrating our small boy and his journey through this huge existence.

The Ballad of a Sick Miles

When Miles gets sick, it’s like regressing almost several weeks in a host of different areas. Recently, he missed a stack of school days and was supremely under the weather. The negative to this is the obvious, but with Miles he loses weight, forgets sounds and generally sinks to an odd kind of low. The upshot of sorts is that he calms down enough so that he will sit with you on the couch to watch a bit of kid programming. Or, he’ll just lounge in contemplation as I do the same. It’s the pleasure/pain split with raising a child like Miles. To get some solace, at times, or a bit of respite requires the little guy to get sick and waller that day for days. Now that he’s at full strength and spring break has started, the rest of us are now sick. I’m personally limping along at work, while Carrie takes care of the kids at home. Rest assured, we’ll all be back up and going here in a matter of days trying to remember where we collectively left off as the sick gun zapped us all hard and heavy.

Miles Leaps into Learning

Carrie and I had our first 'check-up' meeting with Miles' home room teacher and speech therapist at Grace last week and the results blew us away. They spoke sparkling about Miles and his ability to adapt, learn and grow in an educational environment. All of our fears going into this huge process of transitioning our boy into a school environment were essentially quelched as we listened to his amazing jaunt into pre-school. We were told that he had met a number of IEP goals and that we would work some new one's into his plan before summer school starts. Overall, they love Miles and expressed their joy in having him in their collective world. You know, there are so many little things that pang you throughout the day when you have a child with special needs and many of those pangs can be extinguished by meetings like this. I'm almost at a loss for words when I realize how well he is doing and how far he has come. Onward and foward .. good work, Milo boy.

The Passing & Hurry Blog

It is exhausting dealing with death. It is exhausting dealing with disabilities. Being a mother is too much sometimes. Being a wife, a teacher, a sister and a friend requires giving when there is nothing to give. Of course, there is an upside…or rather lots of them:

- Celebrating and remembering a single person’s amazing life.
- Small, tiny, little itty bitty, accomplishments…like saying “TH” at age three…
- Dates-when you only get three a year with the person who still makes butterflies in your stomach.
- Students who e-mail you five years later.
- Siblings who save your life.
- And lots and lots of friends and co-workers and neighbors and complete strangers who make your life complete and full, and define who you are and what you do in beautiful ways.

As the purpose of this blog is to discuss issues related to dealing with life and children with disabilities. I’ll do that. First and foremost, I’ll say that it is so easy to get lost in the rush of things and I think that is our biggest mistake. The one we’ll regret the most when we look back at this time in our lives.

After 36 years, only three of them spent living w/ACWD I keep thinking I am normal. If you’ve read this blog, you know I routinely go through the realization that LIFE is different with a child with disabilities…I tried to get a dog…didn’t work. Selling the house took 14 months…I’ve lost more friends than I’ve kept…My husband loves me still only because we were meant to be (circumstances have no effect on this kind of love…lucky, lucky beloved me), all holidays pretty much suck…So here is my big life/death realization…STOP RUSHING!

My father died on Thursday February 3, 2008. Since that day, I have heard that phrase at least 25 times. Brother, sisters, in-laws and even strangers keep saying to me, “sit down,” “relax,” “take it easy and just grieve.” Let’s see…I have also been called Mary Poppins, OCD, and totally frigging hyperactive.

All I can think is that my husband took off the day to be with my kids, so I can help out. There is no time for me to help at my leisure. I actually can’t just relax and grieve and think to myself I’ll be there when they need me. My life simply does not work that way. I actually need to schedule according to my life when I can “be there” for people and that just sucks. I probably am a spaz, but it gets stuff done, Here and now I will formally accept the titles of Pollyanna, Mary Poppins and I will revel in their blessings.

My Irish Wake will be perfect, the bagpipers will rock, the eulogies will be verbose, yet pithy. So, my Father died on Thursday. On Saturday we had an appointment with a major news station to discussion tax scholarships for children with disabilities. We wove the interview into our lives hoping that we could some sort of difference. Our feeling is that we have a duty to make a difference. Thee was lots of cleaning and lots of research. I know for sure I looked like shit on the camera. On Sunday I taught my Mom how to pay all her bills on-line. That required lots and lots of beer…

Oh, yeah, and the Super Bowl party we were supposed to host for my Dad. Right now at 9:50 I’m writing this and have no idea who won or lost, but think about how much my dad wanted New England to win since he’s from there. And I still have no idea how I am going to conduct the funeral because, as ALWAYS, I have no one to watch or care for my sign language speaking baby…

Sunday evening I realized that on Wednesday, the day after the funeral, we have an appointment at Children Mercy Hospital’s Disability Clinic to diagnose Miles. Three years we’ve been waiting for a diagnosis and this appointment has been on the calendar for 7 months. I haven’t filled out all the paper work and I have not finished the program for the funeral. I have to meet with a caterer, a bagpiper, a choir director, a cremator, a priest. I have make 150 color copies of an obituary, I have to set up “final salutes” with the US Navy and the Knights of Columbus. I have to send a mass e-mail to my students convincing them that they should keep doing the work assigned in the syllabus even though I am not holding class.

There are so many small things I haven’t even touched on here. Such as Valentine’s Day, my sister’s birthday, finding a new speech therapist for Miles, Baseball or soccer for Zen? And really all I can think of is life…death…What do I want my last thoughts to be…Yes….yes…I was okay…I loved well…because of that I was loved…I loved and was loved….

So, yes…I’ll let it all go for a bit. Someone else can make sure everything gets done, every step is researched, and planned…all the obligations are kept…Sign language is practiced, lunches, reference letters written, friends know I love them, husband gets a tech thing for V-Day. All of it floating up into the sky in a big hot air balloon of responsibilities.

I’m just going to live for a few minutes and see what it feels like. I’d be willing to bet it feels real, real good to just feel and watch all that love out there…

Miles and the Donkey Whisperer

Those of you who have the privilege of knowing our little Miles realize how utterly obsessed he can get with certain things. He can stand at the sink for hours and dump water from on cup to another. As long as he is plied with ice to make it more fun. He opens his mouth like a baby bird for bits of food not able to avert his eyes from the stream of water or put his cup down long enough to pop a goldfish in his mouth.

Right before Christmas, he became obsessed with horses and dinosaurs. This obsession is a long time in coming as he visits Ebenezer the donkey on Saturdays and feeds him carrots.

He has been having a horrid time going to sleep lately and we decided we’d surf through youtube.com and find some horse videos. He could watch a few and it might calm him down. We found some great horse video with actual cool music and he loved it. He’d bangs his poor head trying to make the “horse” sign and we’d watch the videos and he’d actually go to sleep! Accidentally, in a horrible series of youtube searches, I found a donkey video that I thought he might like. He immediately started making the sound for donkey. This can’t be described in language. This video is of a donkey braying loudly at a man that is filming him with a hearty laugh. The donkey’s name is Honkey.

Every time Honkey comes onto the screen, Miles excitedly waves ‘hello’ to Honkey and talks to Honkey in his donkey voice. He won’t watch horse videos any more. Long gone are the cool videos made by teenage girls extolling the virtues of horse jumping and pop music. We now have to watch Honkey between 15 or 20 times a day.

It still makes me laugh every time and I love that he can ask for something instead of only signing.

Click here to watch the video: http://www.youtube.com/watch?v=tg5zJ580Wo0

Feedback, Growth & Emotion

This morning was my very first time putting Miles on the bus by myself. I did it once before with the family, and have been there every day to see him off, but today was the first to see him leave without me. It's quite an emotional thing and I didn't think it was going to gut punch me as hard as it did. My little boy is getting older, wiser and a bit more independent. And he is doing so good at all of it. As we all collectively catch our breath day by day after the move and raucous summer, it's delightful to see the pieces coming together. I got two very promising e-mails regarding Miles yesterday that compounded our notions of his growth and charm. The first was from the Occupational Therapist at Grace Early Childhood that lauded Miles for his ability to follow directions and complete tasks. She was very impressed with his day yesterday, and overall is delighted with his progress. She said that he sat in his chair unprovoked for about 20 minutes. All without a wimper and following direction well. Then, I got another e-mail for the ABC Behavioral Clinic wishing Miles well and saying how much they missed his energy. Miles is a little force and he's bounding so well in the right direction. My morning drive was a wet eyed event becuase of all the changes and amazement of how far Miles is moving in the right direction. As hard as it all can be, it's these mornings of polar opposites that keeps everything in perspective and the sun spreads and spills just right over earth.

First Bus Trip

Today was a big day for Miles to take a small step towards independence. He loaded up on the school bus for his first full day of riding to and from school. The initial load into the bus was a very, very hard thing for Carrie and I to go through. Miles had a huge crocodile tear streaking down his cheek as we left him in his harness and his first ride to school in a strange vessel. This is the first time that Carrie and I had ever left him in a car of someone other than family or very close friends. It was a hard string to cut loose. But, he did get a rousing note from his teacher and bus driver saying that he was delightful on the ride. We were greatly relieved as thoughts of abandoning the whole bus notion went through our brains at a very rapid pace. Again, our small Miles boy surprises us with his tiny body of courage, guts and sheer enjoyment of life.