Writing

One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

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Finally Picked My Three Words for 2010

by Tim on January 8, 2010

I think I’ve finally settled on my three words for 2010. Luckily, ‘timeliness’ isn’t one of them.

Proclaim – This is about committing to writing in many forms, whether that involves my writing projects, blogging, other social media, articles, writing letters to Congress, or anything else where I can speak what’s true to me and advocate about what’s important to me, particularly autism and children. And this is not just putting words on paper or screen; proclaiming is writing emphatically and ramming the exclamation point down into the table.

Connect – To personally connect with more parents, educators, therapists, specialists, technologists, and others who have similar experiences to mine and foster the relationships I’ve already made; to help people connect with each other so they can learn and get the information and support they need; and to connect people with quality online resources that help them become better parents, carers, educators, or therapists. This includes actually responding to my e-mail and our blog comments in anything resembling a timely fashion – which I’ve clearly and epically failed at for a long while now – as well as participating on others’ blogs.

Bamboo – This one requires a bit more explanation. Bamboo is – among other things – an important symbol in Zen Buddhism. It is very strong, flexible, supple, and resilient. It will bend under tremendous weight but not break and still be able to snap back to upright when the weight is gone. It responds exactly as it needs to under pressure, bending neither too much nor too little. It is the opposite of tension and rigidity. It has a profound ability to flex and adapt even to vast changes.

I wanted to find a simple word that for me captured the foundations for physical health, emotional health, and attitude. I think in order to be like bamboo you have to find ways to bring yourself more into balance, take care of yourself so your body can respond to things in the right way, practice a lifestyle that fosters calm, flexibility, and ease in the midst of great challenge and adversity, be open to opportunities and gifts that come from being a parent, and nurture a positive attitude about life.

Of course, if I manage even a fraction of any of that, I may try to cure cancer while I’m at it. :-) But by trying to be more like bamboo, I think I’ll be a better father, husband, and friend.

One of the activities that pondering bamboo has led me toward is something I discovered called a ‘gratitude journal’. I at first thought of it as incredibly cheesy, but after doing it for just a couple of days I felt a noticeable change in my perspective. Being the geek that I am, I do this on my iPod Touch using an app – not surprisingly – called Gratitude Journal. (Link opens the App Store in iTunes – it’s 99 cents) Just open an entry, type some things that happened that day that you’re grateful for (shows up basically as bullet points), and you’re done. If you feel like it, you can rate your day 1-5 stars and drop a photo into it, though neither are required. It takes maybe two minutes, but I’ve found it a great addition to my day.

Have you decided on your three words for 2010 yet? Would love to hear them if you want to share!

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From the Way-Back Machine – Reflections on Father’s Day

by Tim on June 14, 2008

I found these words in a journal I was writing in almost three years ago, before J-Man was born. What it would be like for the me-of-then and the me-of-now to meet given everything that has happened! And what would the me-of-then think of how many layers of meaning there were to his words that he couldn’t possibly have known about then?

These entries are excerpts from those journals and are addressed to our son. (Don’t worry, this isn’t going to go over the whole 40 weeks!)

——————–

(written a few days after Mary got her positive pregnancy test)

It was only a week ago that we found out that you were going to become a part of our life. We have been stunned most of the time ever since. Becoming a parent for the first time, especially when you are over 30 like us, is hard to comprehend. For me, it’s the sense that I won’t be a good father and that I won’t be all you need me to be. Maybe by the time you read this, I will have proved more to you than that.

There’s always the fear at the beginning that things will not go according to plan. It happens to a lot of people. We tried very hard to prepare the way for you to come into the world and have wished so hard that it would come true. As I often do, it’s also a time for a lot of anxiety wondering whether something will go wrong. Writing my thoughts down here perhaps is a way to make it seem more real, but mostly as an expression of faith that I know now that you will come safely into the world and into our lives.

(when Mary was about seven weeks)

Next week comes the first exciting doctor’s visit. Using some Doppler ultrasound device I don’t remotely understand, we should be able to see your heart beat for the first time. At eight weeks, such a thing astonishes me, especially because the pictures in the book say you probably look like a very tiny, wriggly, alien-shaped entity attached to an oversized head. I’ll still think you look great regardless of the pictures.

Sometimes during this process of waiting, I wish I could dump everything I know through your cord and into your head. Not book knowledge really, but experience and hopefully some wisdom. I imagine, though, that there are a lot of things we’ll just have to learn together. I’ll apologize in advance if I’m overprotective or obsessive about helping you learn how to be and live in the world. It can oftentimes be a scary place. I know you’ll figure it out though.

(after the first ultrasound at eight weeks)

In the first eight weeks, you know that you are going to be parents and feel excited about it, but it’s still so hard to believe you are actually coming. Seeing and hearing your heartbeat brought it all home in this one overwhelming moment. Someday when you are in the same place, you will know what it feels like.

We will always remember this day because your heart lit up in front of us for the first time and our love for you was so strong that in that moment I could not imagine being able to love you more; but I know I will. It has been that way with your mom. On our wedding day, I looked into her eyes and knew all the way down to the very core of my soul that I loved her far beyond any love I had ever felt. I could not imagine loving her more than I did then, but it happened anyway. The great thing about love is that there is room for everybody, and it never has to know any limits.

(about nine weeks – right after our Snow Storm From Hell that year, and strangely symbolic of things to come)

Someday someone may mention this storm to you and you can tell them this story about how I left one part of town at 1:00 PM and didn’t get home until 9:00, over what should have been a 20-minute drive. I feel a strange sense of accomplishment for beating the odds and getting home. Maybe the moral of story for you is, use common sense but stick with it and work your way out of whatever is in front of you. Determination mixed with some good common sense is a valuable gift to have.

(after the 11-week ultrasound – don’t worry, last entry)

To see you today with a very identifiable head and face, your torso, and little arms and legs was amazing. How far you have come in only three weeks!

You were pumping those little legs like you were trying to run around in there. Your heart is strong and you are starting to stretch your legs out to come into this great big world. Keep doing your dance. Grow strong.

[Back to the present day - Three weeks is still a long time in your world even now. And how I love to see you dance.]

——————

If you’ll humor me a bit longer, this is a little poem I wrote about what it feels like for me to watch J-man grow up so much each day. I wrote it well over a year ago, but it still fits me. It expressed both my joy for all the memories I have of him when he was really little, and the grief that comes when you box up your child’s baby stuff. You have to admit to yourself that they’re growing up. It all goes by so quickly.

As I read this poem now, I think how much of my fear of not being a good dad has been boxed away now, too. Experience is a great teacher, but my son may be the best teacher of all. When I wrote it, I never imagined we’d be where we are now. I’ve realized how many of my old ways and habits that brought a lot of negativity and fear have gone away either because I put them away intentionally or because they seemed to have worn out on their own.

That doesn’t remotely mean I’m all ‘with it’ now. What a joke that would be. It just means that this is a good sign I’m learning something – something I never would have learned without being the father of this wonderful little boy. You are the best Father’s Day gift I could ever hope for. 

Outgrowing

I put new griefs into boxes
reminding myself to store them
somewhere away from the old.

There’s the little, white onesie with
	the tiny, yellow ducks,
the sleeper with I Love Daddy on it,
the little footie socks you wore last winter,
the blue hat with the doggie ears
	that you refused to keep on,
the red and white-striped jumper you wore
	your first time at the beach,
the soft, cream-white sleeper you wore in the hospital
	against your jaundiced skin.
It was the only newborn outfit you ever wore;
we had to stuff you into it for pictures.

You’ve outgrown these blankets that swaddled you
while I plowed furrows in the carpet
during your walking naps.
They go in with the hooded towels,
especially the one with the teddy bear head
that covered your long, wet, hobbit hair.

You’d pull the hood over your face
waiting expectantly for us to find you;
we always would.

Someday I hope you get to pack away memories like this. 

I guess I should put away too my fear
of being a bumbling father.
We’ve done well together so far.

I tell myself, it’s OK to outgrow things.

Thanks for reading.

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