Autism

Caleb is 4 1/2 years old now. He has a long list of physiological abnormalities and an equally long list of developmental delays that make up the "constellation of symptoms" that his doctors have been working with and pondering over as they try to determine what syndrome he has and what makes him who he is. Each year when we meet with Genetics they come up with new ideas of what it might be. So, blood is drawn and while we wait for the results I go home and read about each of the possibilities. When the results come back negative I am relieved. "Oh good! I didn't want him to have THAT!" As if there would be a syndrome I do want him to have. And as if I don't already know who Caleb is, with or without a name to put on his condition. Then last year, a new doctor, a developmental pediatrician who we were meeting with for the first time and who is young, suggested that Caleb was autistic. I didn't realize that day that he was giving a diagnosis. I took it as an idea to ponder. And I did ponder. What I decided was that this young, well-meaning, inexperienced doctor had mistaken the characteristics of ACC (Agenesis of the Corpus Callosum), which Caleb does have, for autism and misdiagnosed him. I felt that autism was being used as a catch-all so I dismissed it.

This year, we returned for a check up and Dr. N. spoke of Caleb's autism just like that, like it was him. Like it was real. I asked him about the mirrored ACC symptoms and about how you can be sure of something like this without a blood test. (I love the apparent clarity of a blood test.) And the answers the doctor gave made sense and addressed the concerns I had. Still, I am dense and this has taken awhile to sink in and for me to accept it. And after all the discussion when do we know it is real?

It's weird that I am having such a hard time with this. We have been looking for several years now for an identifiable diagnosis to pin to Caleb's symptoms. But I think there is a part of me that doesn't want a diagnosis. I just want Caleb to be Caleb.

So I am just starting to accept this, have only told a few people about it. I'm not keeping it a secret, it's just that there is no smooth segui in a conversation to say, "Oh, did you hear that Caleb is autistic?" And it seems strange to announce it on Facebook like an engagement or baby birth or something.

Also, inwardly I worry that once I tell people Caleb is autistic they will just hear the diagnosis, put him in a compartment in their mind for what they understand autism to be and not really get to know him. Perhaps that is why I don't accept his diagnosis easily. I know him and he does not fit into the autism compartment that I have formed in my mind by my media-led view of what this disorder is.

The diagnosis does open up opportunities though. We are working on getting him into some intensive therapy here in town at a facility that works just with kids ages 3-9 who have autism. Who knows what will come of it, but I am hopeful.

At times I feel overwhelmed because I feel that there must be so much that I need to do to help him reach his potential, and that there is a time limit in which to put forth that effort. If it's not done on time that he'll just be trapped and never become who he could have been. I am fine with who Caleb is now. I have always been fine with who he is. But I don't want to be the reason that he doesn't get more out of his life. This stresses me out.

I have been reminded several times in the past couple of months that although I may not know how to help him, and although I do not know what is going on in his mind, God does. And because God does He has put in place those things that Caleb needs. I see it with his siblings. Evander and Jayne are some of the best therapy that boy could ever receive. And he reciprocates. They need the training he gives them as well. When I look at it this way, it's not nearly as overwhelming and I can in fact be grateful for the whole situation

Dad and son

As Nate and Evander drove quietly in the car tonight, Nate said, "I'm not very good at talking to people."

Evander responded, "That's OK. I'm not very good at listening."

True and true. And a perfect pair.

Healthy and Sick

We often brag to people about how healthy Caleb is. How, isn't it incredible that with all his congenital health problems that he is hardly ever sick?!

Well we were just asking for it. He has now been sick for about a week (not including the 3 days from the week prior when he was also sick) and has shared with Jayne and me as well.

There is one nice side to Caleb when he's sick. He normally is always moving and seems a little irritated to be stopped for hugs or kisses. But since being sick all he wants to do is cuddle and be held. He pulls his legs in tight like a potato bug and just leans in for as long as you'll hold him.

This morning I set him down on our bed and left to go take care of Jayne. When I returned he had wiggled in under the covers and onto Nate's pillows. He's been there for a couple of hours now. So content.

Since they've not been sick and perhaps to get away from those who were sick inside, Nate and Evander decided to camp out in the backyard on Friday night. I'm pretty proud of them. I'm way to wimpy to be camping out at the end of January. They even built a fire and ate popcorn before climbing into their sleeping bags. The temperature when they went out was 26 and the low that night was 9. Evander's only complaint the next morning was that his hands got too warm.

New Years Day 2013

Nate and I got married on New Year's Eve. We had a great reception afterward with friends and family, ate cake, danced and then drove off to begin our honeymoon. Our first meal together as a married couple was after we got to our hotel and realized that neither of us had eaten dinner and we were starving. Not feeling like braving the NY's Eve crowds we ordered room service, a very tasty burger and fries.  Every New Year's Day since then we have had hamburgers. Last year we made our own, but usually we find somewhere new to try. 

This year's burger joint was Zombie Burger, a very popular, fairly new restaurant in the East Village. 

Evander was definitely creeped out by the zombies standing behind us and the zombie mural on the wall in front of us. Jayne, however, was just concerned about all of their "owies". Caleb ignored all that and enjoyed his own reflection in the window. 

Our Return to DC

Jayne and I with Kerry Strom...We stayed WAY too late
talking that night. But good friends, good food...
what else can you do?!

Nate, Jayne and I with Dave Strom

Nate's new firm has treated him well from the get-go and one of their perks made for a fun unexpected trip to DC for the AIA Conference. Since Nate's hotel room, airfare and rental car were paid for Jayne and I decided to tag along. While Nate attended classes and seminars, we visited friends. We didn't get to see everyone and everything we would have liked to, but after 5 years of missing the area, it sure was fun to visit.


Laura Ostler and her beautiful little boy. Jayne and I
spent the afternoon with them talking, a walk to the
park, and freshly made ice cream from a local shop.


Joanna Laudie and Kristine Rogers with Jayne and I. I
hadn't seen either of them in years and it'd been nearly
15 years since we returned from the Jerusalem Center.

At Rick and Hillary Martell's house with little boy Henry.
Great barbeque there with lots of friends.

 

 

We're Baaaaaack!

I do realize that it has been months and months. In fact, I am so intimidated right now of catching up on lost posts that I'm not going to. Let me sum it up: September: Evander started school. Caleb turned 3. Caleb got glasses. Jayne turned 1. October: Beautiful weather continued. Took a trip to a pumpkin patch/corn maze. Halloween happened (3rd year in a row of no pictures of this holiday). November: I took a trip with Jayne and Caleb to Utah for my Grandpa Blaine's funeral. Nate and Evander has a boys' weekend. I got to spend Thanksgiving with my parents and siblings for the first time in AGES!. December: Nate lost his job. Evander turned 5. Merry Christmas! January: Caleb started preschool at Smouse Opportunity School. Good weather continued. We might have had a day or two of snow. (great year for our snowblower to be out of commission.) February: Nate got a new job. March: I quit my job! Caleb showed he can walk without his walker! (Still uses it, but someday he'll ditch it. I just know it!)

Caleb's News

My last post marked a season of firsts, and now all those new things have fallen into the "normal" category of my every day life. So let me share some updates of the last SEVEN (gulp! Really 7?) months.

Caleb's last seven months have been huge. It started out with those new glasses. That quick-eyed opthalmologist (because that's what you have to be to give Caleb an eye exam) also brought us a little closer to a diagnosis for our little man. His optic nerve was the wrong color, pale, indicating a brain problem. He ordered and MRI of his brain. And now we know that Caleb has a condition called Agenisis of the Corpus Collosum. Meaning, the brain fiber that connects the two hemispheres in his brain didn't fully form. It seems to explain a lot.

In January Caleb started preschool at Smouse Elementary, a school devoted to special needs children. I was so incredibly hesitant to send him. But all his therapists, my cousin who has a special needs child and a close friend who is a special ed teacher all insisted it would be great for him. But he's so little, and I cherish my time with him, and he is just beginning to interact with those around him, and....I decided to send him and leave myself the option of quitting it. Well, a couple weeks in I realized that he is happy when I pick him up after school. This enriches his life. I drove home from school one day feeling quite humbled to know that as much as I love him, I can't be everything for him and that he does need these teachers, classmates and therapists.

One day in March, when I picked Caleb up from school, his teacher asked if he had been walking a lot at home. I answered no. They informed me that he had been walking all over the class room that day WITHOUT his walker. That weekend he walked for Nate and me too. Exciting! We can't always get him to do it now. But he knows he can. That's really the biggest step with him. And he finally prefers to be in the walker more than crawling on the ground a good portion of the time.

Also, and definitely not the smallest of all his accomplishments, Caleb has started to go to sleep for real at night, without HOURS AND HOURS of coaxing. This is such a blessing because although you kind friends may not realize it, Nate and I are not always the most patient people and fatigue makes us cranky. So now we will have more patience to spend elsewhere in our day. I give full credit to melatonin pills for Caleb's recent sleep success. Over-the-Counter Miracle.
The cherry on top of all this...Caleb hugs now. He's always loved to be held, but now he wraps his arm(s) around my neck and holds on like a koala.