Tuesday, December 30, 2008

Miles of Bags & GABBA - GABBA!

As we hurtle forward into the joy of a long, long winter break, we continue to garner much joy from the eccentricies of our Miles boy. In between moments of holiday elation that included a huge Thomas tent for his bed, art supplies galore and a good easel, he has managed to put an enormous amount of things in small zip lock bags. I have be studious lately in capturing images of all these items in each of their respective bag homes for a show at a gallery some time in the future. He puts his coins, play dough, plastic ninja's and a whole host of assorted items. I would strongly reckon that he rips through at least 30 bags a week. At any rate, we are ready to bid '08 farewell and welcome another cool year in the life of Miles and our clan. Finally, we have had a big wish come true when Miles finally sank his teeth into a kid's TV program. His new favorite show is 'Yo Gabba Gabba' and it has turned into a huge obsession for him. He has the clothes, the dolls, a dance mat and other trinkets I have a hard time remembering. But, he loves the show and we have watched it daily for weeks. The infectious explosion of happy kid fun in a timeless world sometimes turns Carrie and I into dizzy zombies. But, we both look at each other in those moments of blaring color and music in the backdrop and smile at a small wish come true and a happy, transfixed Miles staring at the hopping TV screen. Keep your eyes open .. very soon I will be posting a sort of video exposee of the Miles bag conquests.

Tuesday, December 16, 2008

The Real Miles Birthday

Carrie and I were getting nostalgic and talking about the pictures we had of Miles on the day of his birth. It was quite cool to recant the events of that day and I figured I would christen it in stone with a little video compilation. I have to say that was one of the best days of my entire life. And I think Miles would dig seeing a recap of events that brought him into our lives. Enjoy ..

Friday, December 12, 2008

Miles Relaxing as a Barbell

There are certain things that we do with Miles that completely relax him in ways that are a mystery to us. These tactics wouldn't work with other kids, but with Miles it goes over like a dream. Recently, I was lifting him up as though I was bench pressing some weights and it completely soothed him. He slipped into a kind of trance, relaxed and didn't say a word. Enjoy the video ..

Monday, December 8, 2008

December 8th - A Miles Birthday

Our Miles boy is 4 today and I always get quite nostalgic about the occassion. It takes me back to when Carrie and I began blazing our path and Miles was a part of our creation. One minute before 5 p.m. four years ago our lives became richer in ways that are impossible to describe. The amount of love Miles brings to this world and everyone he encounters is the coolest thing I could have ever imagined the night of 12.8.04 when I wondered how Miles would alter the course of this very full world of folk. Now that I have a full boar Miles birthday to look forward to, I feel my actual birthday has been diminished to something less significant. Miles is now tucked away on the bus awaiting another huge day at school as we marvel at the enormity of who he is and how far he has come. Of the very many things I dig about little Miles, I'm glad that he loves music, watches little TV, smiles a lot, loves sushi, gives love to everyone he meets without prejudice and has a thirst for this existence that is all together refreshing and enlightening. Carrie, Zen and I are bound by the thickness of his love and dig each and every moment we have with him .. especially on this day. Happy Birthday, little Miles ...

Tuesday, December 2, 2008

Friday, November 21, 2008

Wednesday, November 19, 2008

Leaning Towards 4 & New Friends

While rounding an aisle last night with Miles in the local Wal-Mart, I heard a small girl almost whispering his voice. As I peered around, I heard his name louder come from an excited little blond headed girl with bottle cap eye glasses. At this, Miles looked at her stunned and snuck into a shy zone. This little girl was beaming becuase she saw Miles and said that she goes to school with him at Grace. It's always cool to see kids that recognize Miles and how excited they get when they say 'hi' to him. I have always felt completely warm and content when other little kids see Miles out in public and get infused by a pure joy. Onto other fronts .. Miles is going to turn 4 on 12.8.08 and it's really a huge mental hurdle for me. No longer is he his young 3-year old, rather he is transforming into a little 4-year old boy. I have always marveled at how much he grows on a regular basis, but 4 is kind of an astronomical number for little Miles. It's been a helluva ride for the little guy .. can't wait to shove those 4 big candles into his cake.

Wednesday, November 12, 2008

School Pic and Fall Back

I have officially hit that nail in the road called 'daylight savings' and I'm done with the deflation from those moments. Seems like Miles historically regresses during this loss of light in the day and the general change in our lives during this time. Over this last weekend, he neglected a good rapport with potty training and just wouldn't listen to simple commands. He was doing a host of things that are way out of character for him and there was a decent amount of tears. He has pulled out of this phase, but I'm really considering the possibility of doing heavy lobbying to rid this nasty fall back and spring forward of time. It's an old law that used to help farmers and now becomes a nuiscance to innocent parents. At any rate, we have the new Miles school pic for all to enjoy ..

Monday, November 3, 2008

Miles' Latest Progress Report - 10.30.08

Miles is a happy and loving little boy, who arrives to school each day with a big smile. He is able to follow the class routine with his individual visual schedule. His attention span has increased and he will now stay with an activity at centers longer (up to 7 minutes). Miles shows interest in other peers and is now greeting them in an appropriate manner (no more hair pulling):
  • Miles is beginning to identify his name in print.

  • He can consistently name the color blue and has emerging identification skills with other colors.

  • He can match shapes and receptively identify 3 out of 6 shapes (circle, stars and square).

  • He plays with toys in an appropriate manner and currently is in the state of parallel play.

  • Rote counting and counting objects is an emerging skill.

Monday, October 27, 2008

The Miles Cake Walk

Miles had a full boar day of Halloween excitement this last Saturday. He started out at his school, Grace, and ended up in the basement of a church up the road. As he hoped around with sugar ripping through his motions, he gave most everyone a smile in his pumpkin attire. The coolest event of the day was during a cake walk in the church. Carrie had to essentially lead him by the hand over to the cirlce and get him started on his first ever cake walk. As they walked around in circles to 'rock lobster' blaring loudly, Carrie had to carefully keep a hold on his hand. When the music stopped and the winner was announced, I was quite shocked that it was Miles. At the announcement, Miles just looked stunned at the overload of information. His luck landed him a orange pumpkin cake matching his own digs. It made me ponder the pomp and circumstance of our small Miles as I'm sure most looked on wondering why he wasn't more ecstatic about his new cake. The truth is, Miles doesn't need luck, a contest or a 'win' to act ecstatic about anything in particular. His moments of spontanaiety happen when he sees fit and sometimes the little kid gets to win his cake and eat it too.

Tuesday, October 14, 2008

Thursday, October 9, 2008

Big Socks and Small Jokes

The other day I was getting Miles ready to go on our nightly adventure to the park. It's a time of sheer excitement and Miles loves getting his shoes and socks on for the outing. Earlier this week, I was getting ready to put on my socks and ready to help him put his on. Before that was to happen, I pulled one of my many joking moments with Miles when I told him he could try my socks on while I would attempt to put his on. As I slipped the mouth of his sock over three of my toes, he reared back in uncontrollable laughter. As he rose again red faced and still giggling, he began putting my socks on. Within seconds he had both on and they went up to the bottom of his shorts. He laughed as though this was the most amazing thing to ever happen to him. From there, my tiny joke became a new Miles sensational obsession. He had to take my socks to the park to fill with rocks and hold on to for lasting comfort. The following morning while getting him ready for school, he seemed completely disoriented. While on the changing table, he lolled around in an uncharacteristic silence until he saw my socks tucked in my front pant pocket. At that sight, he inhaled loudly and squealed for a pair of my socks. From there, it was sheer pandemonium as he got another pair of my white socks and tore around in kid glee. I'm again guilty of a good joke back firing, but it is hugely amusing to me that he gets so charged about things that are so mundane. Another pleasant anomolie of Miles and his cool march into a very unique and intriguing personality. Alas, karma is going to hit me hard when the weather gets colder and I try to find a good pair of white socks that I won't be able to locate. Miles will have all of them scattered around the house as I finally realize that the joke was on me the whole time.

Tuesday, September 30, 2008

The Public, Miles and The Stars

I find myself really soaking in the ways that Miles mingles with this world and vice versa. The other day, I was at the playground getting ready to take him across the hanging slider he likes so much and he was giggling like a hyena. Shortly thereafter, a little girl came up and started asking him questions, which prompted sign language. At this, she asked, 'Is he deaf?' I told her that he was mostly non-verbal and we went on our way. After this interaction, I remember Carrie telling me that people are going to start noticing the way Miles is in relationship to other kids in his age range. Nothing too glaring, but non-verbal nature is going to raise some questions in folks. I can't even count how many times we are out and someone asks Miles a set of questions. I usually let Miles say his 'hi' or 'bye' or any other verbal surprise that will arise without saying anything. Other times, I have to stop the woman cutting his hair or the person checking our groceries out and tell them that he is non-verbal. At that point, they clamour up and get that huge question mark on their countenance. Sometimes I say 'Autism Spectrum' to clear the air, other times I just let the silence linger becuase I don't have the stamina to get into it or get the consoling look. On the flip side of this, I love what gets his motor churning in that over the top affection he is so familiar with giving people. There's an older grandmother type next door to us that smokes on a regular basis in front of her house. It used to be that Miles would unleash a litany of 'hi's' on her as she stood out front. Now, he tears away like his shoes are on fire to give her a huge hug. I see the relief and joy on this woman's face as Miles again warms a heart down like a hot flame licking candle wax. It's an amazing sight to see. At any rate, another tiny puncture of light into the world of Miles and our family. Oh, and one last thing, Miles is really getting into looking at the stars at night. We sat on the porch for a good stretch of time last night glancing over a blanket of small celestial punctures. Again, it was one of those sponge moments when each of my pores soaked in the goodness of a spill I wanted to happen.

Monday, September 22, 2008

The First Day of Fall ..

In honor of the summer that just went by, I have put together a highlight reel of Miles and some of his pleasures ..

Tuesday, September 16, 2008

The Fun of Dirt

Miles has been tearing along quite nicely lately. He's hopping on his new bike and riding quite well. The braking is still a bit of an issue, but he's getting the overall hang of balance and the like. He keeps getting solid comments back from school on his in-room learning and overall beahavior and grasp of therapy. The bottom line is that he loves school and continues to thrive in that envirnoment. Lately, I've noticed that his attention span is really peaking out. He's much more apt to read several books at the end of the night, put together a big set of blocks or simply play his own world out in a field of mud. Business as usual while the world rotates around in his eager eye balls ..

Thursday, September 11, 2008

Miles Has a Bike with Training Wheels

To say that Miles is ecstatic beyond my grasp to pen proper emotions would be an understatement. Our little boy has picked up another good habit and he's tearing forward in flying fashion. Enjoy the video montage ..

Thursday, September 4, 2008

The Loss of Papa Joe

Miles lost his grandfather and I lost my hero. My father passed on August 31st and we are in the process of paying proper respects. Thought I would post a pic of Miles with his Grandpa Joe. Take care out there ..

Monday, August 25, 2008

Tuesday, August 19, 2008

Ridin' the Short Bus

Today was the first morning of school for both Miles and Zen. Last night, we met with both of their teachers and Miles was unexpectedly shy when going back into his home room. He clutched at me hard and flashed his newest lower lip he has been working on lately. He finally snapped out of his kid shell and was again ecstatic to get back on the bus this morning. On another note, Carrie and I put the finishing touches on an illustrated essay that will be in a book called My Baby Rides The Short Bus. The final contractual agreement has been signed and sealed. This anthology of essays from parents with children that have special needs or are in the autism spectrum will be out nationwide in Winter of 2009. For an unedited version of this essay, click here to read - Enjoy ..

Wednesday, August 13, 2008

Making Up Language

Over the weekend, Miles was desperately trying to tell us that he wanted something before going down for a nap. It was a click-click sound he makes for ice with a woosh of air between his front teeth. Then, he was snapping his thumb/forefinger in a rapid succession. Carrie and I were both perplexed. Even after we let him up to parooze the house, he couldn't find it. So, the nap happened and he hopped up looking for his unsignable object. It ended up being a strip of stickers and it made complete sense after he got them. Several months before this, he was making his own sign for a digital camera he likes to hold and snap shots with. Again, we couldn't figure out what he was asking for. This time around, I spent some minutes going around the house with him asking questions until it dawned on me that it might be the camera. It was a wave of complete relief to see him face beam with a communication conquest. Lately, we have been pushing more and more for him to use his verbal language. He has been blossoming. Lately, he's been saying 'hi' and 'bye' spontaneously to strangers in public, along with saying the word 'blue' for various things from gum to slides. In closing, Miles got a published profile in a newsletter for the Children's Education Alliance. Click here to view (on page 3) ..

Thursday, July 31, 2008

Pure Miles Consumption

This morning, I was driving into work and getting a good smile over Miles' car seat sitting all quiet in the backseat. It was just another sign and testament to how much Miles is growing on a daily basis. The old car seat is out and the newer, trimmer version is there for his growing body. I love watching all of these milestones (no pun) stack up in the busy weeks that fly by like melting butter. This was all on the heels of putting Miles on the bus for his final day of summer school. It was also on the heels of getting the first e-mail of the day from an editor that wants me to proof a bio piece for a special needs newsletter that is profiling Miles. This is also on the heels of me writing a 5,000-word essay on the growth of Miles for a book that will be published in 2009. Finally, I have to note how cool it was to see a construction paper sailboat project Miles brought home in his back pack this week. It is profiled on the right sidebar of this blog and it blew Carrie, Zen and I away at how nice it was. When I see his little name on his artwork and how he strives so hard at school, it always cracks the largest smile I can concoct. An all consuming Miles morning and the enormity of things around us all really come down to that small kid car seat in the back seat. It's always a joy to watch our boy grow and evolve into a sparkling little kid that he is. Until next time - godspeed.

Wednesday, July 30, 2008

Tuesday, July 15, 2008

Speaking Miles

While picking up a delicious plate of cold sushi yesterday at the best Sushi house in the KC area, Siki in Lee's Summit, Miles said 'hi' to the woman getting our food. 'Oh!', she exclaimed excitedly. 'He can speak now, huh?' I told her 'a bit' as I looked over at Miles wondering where that spontaneous 'hi' had come from. It was always there looming, along with him occassionally saying 'bye' as well. Since he is so gregarious and open in public with saying things and waving, it's beyond words to hear him speaking to people in hello/good-bye. It's when you least suspect it, as I did, that Miles will bust something out and floor you with his ability.

Monday, July 7, 2008

Summer Harvest

It's hard to believe that Summer is getting to be about half-way done. Miles continues to make solid strides in school. Though, it was hard for him to begin the process again. The learning bug is firmly engrained in his bones. At home, Miles is getting giddy about all the fruit that is growing in our backyard. We have grapes, raspberries, apples, peaches and a couple of pears. For the last several days, he has been going down to get his mouth firmly full of raspberries. I have put a video below showing the excitement Miles has for his new home full of fruit.

Thursday, June 19, 2008

The Amazement of Life through Miles Child

Today, I was working with my Superintendent's wife, Becky, on converting some video of their daughter's wedding onto a DVD. A rather easy thing for me was quite a relief to them. Through this process, I remembered that Becky had a history of working with children in the autism spectrum and special needs. As we discussed special needs children, Miles, modern research and how folks perceive autism, I was again amazed at what Miles has done for Carrie, Zen and I. As challenging as it can be (an understatement at times), Carrie and I realize and acknowledge on a regular basis what an amazement Miles is. Through his perception of the world, joy, daily evolutions, fixations, habits, quirks, coolness and so on, I have gained an amazing view into a world I never knew. It's a world constructed of wonder, love and pure amazement that something as cool as Miles exists .. and he is our boy. Carrie and I feel that to the elemental fiber of our cells, soul and collective heart. He opens chambers of understanding and fascination that I never knew were remotely possible. This is the flipside to how parents describe what it's like raising a child with special needs. Usually, we are approached by a variety of folks that ask, 'How do you do it?'. Our responses likely don't capture the magic of what we get to experience in this life of ours because we have a beautiful boy like Miles to enrich every breath we take. I want to make sure that was voiced, known and resonates through this blog and our continued dissemination of our journey with Miles. We love him madly. Finally, I felt hugely compelled to write this missive after getting several books from Becky on a woman named Temple Grandin who wrote several books on Autism from an adult's perspective. She is a fully functioning autistic woman who has a Ph.D from the University of Illinois and is viewed as an expert on animal sciences in America. It's uniquely cool what can come out of a conversation, what can come out of love and what can come out of the gift of a boy like Miles on each step we create in this hugely interesting life.

Wednesday, June 18, 2008

New Pals for Miles

Now that Miles and Zen have started Summer School, they both wait out front for the bus to arrive. During this time, Miles hops on his bike and excitedly races up and down the sidewalk as a group of neighborhood kids, also waiting for the bus, oggle over him and push him around on his bike. He completely loves this and is a hit with the kids. Again, it's those small moments when you see your child bristling with happiness as the world seems to fit into order. Then, Miles gets the ultimate joy of seeing his yellow school bus pull up as he gets strapped in for another journey down the long, long road .. a video with Miles, Zen and friends shows the excitement - Enjoy.

Thursday, June 5, 2008

The Cool of Miles Learning Something New

Nothing gets Carrie and I more excited that to see Miles doing something new. Most recently, he has gotten the grasp of riding his tricicyle and it's so nice to see. Further, Miles loves to ride it around quite a bit, as well. A little video below shows Milo in action. Enjoy ..

Thursday, May 22, 2008

The Miles Update via Grace Early Childhood

Carrie and I met with Miles' room teacher and speech therapist to get a progress report on how he's done during his first full ride in pre-school. Overall, we were both blown away. His behavior and thirst for learning is very impressive. They said he has the ability to follow directions well, can stay put in one place for up to 15 minutes, tries to say his name in circle time, loves to sing, does well following directions and is overall a joy to each staff member that works with him. Not only is this a great releif to Carrie and I, we are both completely proud of the little guy. From climbing aboard a bus with unbridled delight everyday to bringing home the work he makes everyday, it's beyond cool and nice to see how he's evolving. Things are going well enough that Grace is going to update his IEP with new goals. You know, after these meetings I always leave wanting to do more for him and that is a good thing. A reality check with youngling like Miles is always welcome. Good job little Milo boy -

Friday, May 16, 2008

Friday, May 9, 2008

Merry-Go-Round Metaphor

As is usually the case, Miles will get himself stuck on something in a voracious web of obsession. Lately, it has been doing the sign for horse becasue his grandma took him to the carousel at Independence Center to ride the horse there. So, it's been 'gi-gi' and hitting his head with the horse symbol to recreate the joy. Well, last weekend Carrie and I got him to the zoo to ride the carousel and temporarily took care of that itch. I have a video below illustrating the joy he feels from riding the horse on the merry-go-round .. enjoy.

Monday, April 28, 2008

Tuesday, April 15, 2008

Mind Reading & Brilliance

I have always told Zen that babies and infants are really the smartest creatures on the planet. They are natural sponges of our world that have not been bitten by the bug of inhibitions. And, I have always reiterated this with him when dealing with Miles. Not only that, Miles has this acute ability of understanding everything that is said to him. It's rather odd to have a person that you love so much and that is so close to you not able to string together a simple extract of words to let you know how they are feeling or what they want or how they did in school. All the time, I tell Zen to speak to Miles as though he is going to respond with words and never discount his ability to respond to everything you are saying with the appropriate reaction. The other day, for instance, I was telling Miles what we were going to do in our nightly routine before he was going to get into the bath. One of the things I mentioned in my list, was a 'bag', which immediately sent him to the kitchen. In all my words, I didn't know which one had triggered such a strong emotive response. As he tore by me, I looked up at Carrie and asked 'what did I say?'. She said, 'bag', and as soon as she finished the 'g', Miles had a bag in his hands. Lately, we have to be very careful what we say because the obsessive side of Miles will grind on something. Even if it's something as simple as 'lip stuff' for Carmex, it could throw him into a dizzying twirl of pointing, crying and grunting to get his hands on a tube of lip stuff. This, as Carrie has noted, is one of those things she is not ready to give up to the small Milo boy. She deserves to have her lips moistened without Miles going crazy. And our simple gesture of words can do that. In summary, I felt it necessary to let you in on the most brilliant of humans in our household, Miles, and how he processes our simple communication plans in the most complex of toddler thought.

Thursday, April 3, 2008

Post Austism Awareness Day

The global initiative to recognize Autism on its inaugural day was a bittersweet occasion for me. While I was content with the notion that the world can recognize the Autism Spectrum, it was hard to watch the stories unfold on the TV. One such show was on Sundance late last night and Carrie had to turn it off. Many of the images, behaviors and feelings are too close to home to get immersed in. Instead, we all watched Smallville and continued to cultivate our own family TV show. Overall, I like the fact that a more global awareness can help all families get the needed funding to cover expensive therapeutic costs. That is huge in my mind to plod forward in the pursuit of a bit of easing for families trying to help their children. Recently, Carrie and I agreed to be a part of a video that is trying to secure funding for something called Bryce's Law. It is a bill currently going through the Missouri Senate to provide funds to families that want to send their children with special needs/autism to private schools of their choice. The link to that video is here: http://www.youtube.com/watch?v=Sp7dbnNzEu4 .. Movements start with small pebbles and mount into huge boulders. Hopefully that's what we can watch unfold with further autism spectrum awareness.

Wednesday, March 26, 2008

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.

Monday, March 17, 2008

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.

Wednesday, March 5, 2008

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.

Wednesday, February 13, 2008

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

Tuesday, January 15, 2008

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.

Monday, January 7, 2008

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.

Wednesday, January 2, 2008

New Year Blog

Words seem to mean so much and so little. There are so many concepts that words seem necessary for and then so many ideas that language can’t possible express or even contain. Quotes, those pithy, little expressions of human understanding that seem to explain everything so effortlessly often end up meaningless. Khali Gabrin writes that your cup of happiness can only be as full as your cup of sorrow is deep…The reason I like this idea is that it means that our capacity for love and joy grow with experiences of difficulty. It is so optimistic and hopeful but unfortunately it sounds a little bit (but for some reason does not at all contain the same idea) like those people who say that God only gives you what you can handle…Which by the way, I usually want to smack these people…they never have any “real” problems in their lives so they don’t actually know what they can or can’t handle…I actually find it insulting…it is almost as if because I am a “strong, kind, person” I have to have “extra special burdens,” just to show the rest of the “poor, weak people” how it is possible to be “strong” in the face of adversity. I never, ever in my life have met a person suffering from cancer or grieving from loss who has said God is just giving it to me because I am strong enough to handle it. Which leads me to,” What doesn’t kill you only makes you stronger.” Nietzsche certainly had a dour philosophical streak running through his blood. What I find funny about this quote is how lovingly we Americans have latched onto this adage with such gusto. When you really think about it is quite silly…there are many things that don’t kill us but weaken us both emotionally and physically. This all bring me to Coltrane’s A Love Supreme, which has to be the perfect example of the transcendence of the spoken word. A true exploration of faith, suffering and the journey of life through music rather than word. Coltrane dreamed, literally, the entire album in four parts: acknowledgement, resolution, pursuance, and psalm. I could go into a discussion of how similar language is to math, and thus to music…but that is not the purpose here. I’d rather discuss meditation, or breathing or even yoga. The silence that has eluded me since Miles came into our lives…That same silence that won’t go away…The concept of something being constant yet entirely elusive is something I can’t possibly express in language, or music, or math. Yet those are the places I find comfort when words are not nearly enough…In prayer…which in its most powerful state can’t possibly contain language, in love (indefinable… Every single person experiences it differently therefore there can’t possibly have a common definition), in the comfort of numbers and that sense of a shared experience that we call “genetic memory.” I suppose that it is pertinent that I am trying to write about how words don’t mean much this third New Year that Miles welcomes into his silently deafening world. I wonder if this will be the year he speaks and what he will say. I wonder how many words I’ll read about language, autism, speech...how many discussions, explanations and stories I’ll get to share about the complex joy that comes communicating without words. So, then a toast (what a stupid word) to all of the people who must transcend the spoken word to live in this life…Truly, your world is infinitely more fascinating than mine.