Assuming you have good relationships with them - which to a person we’ve had with all of ours - your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need in order to grow into the fullest expression of themselves that they can.

J-Man’s developmental therapist is moving away this week. Her last day is tomorrow. She’s worked with him for about 15 months now - almost half his life, and far longer than anyone else. When she started, he would become immediately frustrated and upset when you tried to get him to do most anything. Stacking two blocks together or putting a big plastic coin in an even bigger slot looked like asking him to climb Everest. Even being near an open container of Play-Doh would make him gag. Touching fingerpaint would make his little sensory system go into red alert. He had at best a handful of random, unclear words. If an activity took more than two seconds, he couldn’t sit still for it or complete it. It’s hard to realize that when we started working together, he also couldn’t walk on his own. And it would be some time before he did. He had only very recently started sleeping through the night at that point. We were worried, exhausted, and growing more distraught by the day. It was a very hard time.

I see how he still struggles, and every day I grapple at least some with keeping perspective and staying positive. With her leaving, it’s made me look back and see just how far he has come. She was there when we had no idea what was going on, she’s seen us through his autism diagnosis, and she’s given us the tools and resources to know where to go next. She’s given us a wealth of information on how to set up his new home classroom and a home program to complement everything else he’s doing. Over the span of the last few months, she’s poured out so much of what she knows into us. We’ve learned more than I imagined possible, and we have a plan. I hope I’ve been a good student.

She has given us something words cannot describe, but those of you who have been through this know exactly what it is.

In a couple of months, we’ll also say goodbye to his other preschool teachers and therapists as we move into the county school system. Her departure starts this season of transition and mourning that we won’t get to see these people every week who have meant so much to us. I’ll feel this way a lot over the summer as we keep saying goodbye. They have all been so wonderful to us. It’s impossible to adequately express our gratitude to them. They’ve kept us upbeat when we were struggling. They love every kid who walks in their doors and steadfastly refuse to give up on anybody. If they ever wonder how much their work matters in the grand scheme of things, they need only to ask people like me.

I’ve realized that this isn’t a sprint or race; it’s a marathon relay. It’s the kindness and commitment of these once-strangers who have seen us through this far. It is because of them that we have hope in the people we have not yet met and things that we have not yet seen.

Whether they are developmental, occupational, speech, physical, or another other kind of therapist, the ones who enter our lives and offer their hands, heads, and hearts to people like us are often unsung superheroes.

They are worth their weight in gold, and probably get paid their weight in recyclable plastic.

They are reimbursed for gas at about the same rate as pizza delivery people - except they can’t take tips.

They are energetic Macgyvers, making limitless supplies of therapy aids out of egg cartons and dollar-store junk. They don’t even need duct tape, though give them a laminator and they can rule the world.

They will stand on their heads if need be. They will come up with stuff that boggles the mind.

They see our son achieve his latest miracle, and they cry, too.

They’ve never grown up, and we love them for it.

They can turn animal crackers into an epic story.

They know how to work an inscrutable health care and insurance system to get what your child needs.

They will hold your hand and believe, even on the days you can’t. They know when to talk and when to stay silent.

They believe every child has a bright future. They don’t give up. They love each and every child just because. No one needs to prove anything to them first, and no one needs to earn their love.

They work for sticky hugs and don’t complain about the rest.

They still deserve more money.

As families come and go and as they themselves move from place to place, they often don’t get to see who ‘their children’ become. In many cases, at age 3 many of those kids move on. I hope that at 13, 23, or anywhere in between or beyond that I’ll be able to send them a story or two about the kind of person J-Man grows up to be - better yet that he will be able to write to them - and to say thank you for everything. They are as much responsible for the progress he has made as they are for all the things he will yet discover how to do.

Thanks, Meg. We owe you. May the dollar stores always have what you need for your magic therapy kits, and may all your days be blessed.

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.

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

We have a diagnosis - ASD.

As our readers know, we had Jonas’s autism evaluation yesterday and the doctor didn’t even need to score the evaluation to tell us that Jonas has an autism spectrum disorder (ASD).

That spectrum includes a wide and diverse range of things so the more exact diagnosis won’t be clear until we get the full write-up back in three weeks. Given the discussion at the end of our appointment, it appears that we’re looking at something significant. Either way, the wait is pretty much over.

I want to believe it’s inaccurate, but the rational part of me knows it’s correct. I know I’ve been in denial for a while. I didn’t want to believe it, and I still don’t. Jonas didn’t much care for the evaluation, but I thought it was still a fair snapshot of where he is right now. I have enough confidence in the doctor to believe his assessment is medically valid.

We’re not really in the right mental place to talk about this yet. At one level, nothing is any different than Tuesday. He’s still the same, wonderful, beautiful, life-filled, wondrous boy he’s always been.

The reality is that the road ahead looks a lot more uncertain. Yesterday was a very bad day. I went to Barnes and Noble this morning to do what I do to cope with things like this - I bought books about autism. I sat at the reading tables and looked through them. It was all I could do to not start crying again. And I do mean again.

That said, I know we will be fine. We just need to process this for a little while.

To all those who have supported us and continue to do so, we love you.

That’s all for now. More to come.

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.