November 24, 2009

Giving thanks

That time of year is here where we are asked to count our blessings and think of what we are thankful for. I'm glad we don't have the tradition at our Thanksgiving table of every person saying what they are thankful for. This year, I'm not sure what I'd say.

I am thankful that I have a healthy, adorable little boy. I am thankful that we got a diagnosis early and that we didn't have to fight too hard to get him the help he needs. But would I be more thankful if he didn't have autism? If he were the little boy I envisioned - and still hope for - him to be?

I am thankful for the progress that he is making. That I can finally rejoice in each new word and song and animal sound. That when Moe sings, which he does all the time, he is singing a few words now, not just humming. That he can match shapes and colors, count to ten, sing the alphabet. And when he says his sister's name or "cockadoodledoo" it is the cutest thing in the world. But would I be more thankful if he were playing like the other kids his age? Responding to his name? If he was in preschool and talking back to me and picking on his sister?

I am thankful that I can be home for my kids and not pressured to go back to work just to make ends meet. But would I be more thankful if I had the choice? If I were agonizing about career changes and daycare options, and not stuck at home while Moe's therapists come and go, invading my house all day?

I am thankful for my daughter, so full of smiles and laughter. She is a light in some otherwise kind of dark days. But would I be more thankful if I had the time to really enjoy her this first year? If I wasn't so surrounded by autism, engulfed in it? If I weren't so frightened that she could have delays too, watching even now for signs that I wish I had caught earlier with Moe?

I don't know. Maybe I wouldn't be more thankful. It often takes adversity to make us see what we really have. So this Thanksgiving, I'm not going think about what I don't have, or what would be easier or better. I'm certainly not going to be thankful for autism, but I'm going to try not to dwell on it either.

November 20, 2009

Coincidence? I think not.

I was talking with a friend this morning and he said "I feel like you were meant to be here today." I'm not an especially religious or even very spiritual person, but I do believe that some paths cross for a reason. It's not quite fate or destiny, but definitely more than mere coincidence.

One of my favorite books is "A Prayer for Owen Meany" by John Irving (later made into the movie "Simon Birch"). That book has a perfect ending. Everything that has happened to Simon throughout his life comes together so that he could be there at one, precise moment, saving a bus full of children. No one else in the world had the unique set of experiences that allowed Simon to save those children. He was meant to be there.

Yesterday would have been my brother's 33rd birthday. Six years ago, he died of a brain tumor. After his second surgery, he was left with very limited us of his left side, and didn't have any fine motor control over his hand. One day, a good friend of mine, who I've known since the first grade, and who knew my brother since he was about 2 years old, came to visit. Since birth, she has only had the use of one hand, and she showed my brother how to tie his shoes. As I watched, I couldn't help but feel that our entire friendship led up to that moment. It felt like more than coincidence.

Another friend of mine, who is like a sister to me, has twin boys. These boys were born many weeks early, on my brother's birthday. Every year on November 19, I am given the opportunity to not feel sad, but to have something to celebrate. It feels like more than a random occurrence: a life is taken, another is born. (Or another two in this case. I always say that it took two people to replace the hole that my brother left behind.)

I'm sure everyone experiences these lucky coincidences. With so many people in the world, we are bound to run into others who happen to be in the right place at the right time. Every decision we make leads to another. But it is so much more interesting to think that there are other forces at work, more than mere randomness that brings us together. Maybe this will be my new religion. I'll call it "coincidentalism."

November 18, 2009

Six month progress report

At the end of the month, it will be 6 months since we started early intervention with Moe. This half-year has been a whirlwind of emotion, questions, worry, stress, loneliness and fear. But it has also been a period of learning and growth for all of us.

Moe has come a long way since we started. At Moe's early start assessment in May, he was basically non-verbal. Now Moe has said more words than I can keep track of. He labels items, and is getting especially good at animal sounds and filling in gaps in songs and books. He still doesn't initiate a lot of language, and although Moe can be quite talkative when he's in the mood, talking is still definitely on his own terms.

We've also noticed that some of Moe's other behaviors have changed or gone away. Moe used to spend a lot of time standing on his head. He loved to stand bent over with his head on the ground in a downward-facing-dog-type yoga pose. Or he would loop his feet through the slats of his crib so he could be upside down. Jeff and I have both noticed that Moe almost never does either of these anymore. Maybe the OT is working, or perhaps his nervous system is just maturing. I'm not even sure if this was a symptom of autism, but it is a change nonetheless.

Moe is also eating better, taking bites out of larger pieces instead of requiring us to cut up his food into small pieces, or tearing it up himself. He'll use a spoon independently. He still isn't drinking from an open cup, or taking his shoes off, two of our IFSP goals. But he will help with shoes by opening and closing the velcro, so that's a start. He's starting to use his index finger to point at objects in books. Pointing is something we've been working on in OT. He doesn't point to show us things yet. He isn't doing much pretend play either, but he is doing great imitation in play, which is a start. I've even seen him taking something we've done in one session, like making a fireman go up a ladder, and do it again on his own.

Moe is also much more engaged. He makes eye contact on a regular basis, and just seems more present. I think he'd still rather play on his own given the chance, and will tune out a lot, especially when he's tired. But don't we all to some degree? We put a lot of demands on this little boy. Unfortunately, things are only going to get harder for a while as we push him to use his skills more consistently.

As for me, I'm coming to terms with how things are going to be, at least for the next 6 months while we're still in early intervention (after that, we start to work with the schools). I've found some good online support groups, and plan to attend a local parent group next month. I need to learn from others who have been there. I'm currently reading Overcoming Autism, by Lynn Koegel, one of the founders of Pivotal Response Training. I am feeling optimistic about Moe's speech, but know that there will be a long road ahead trying to teach the social skills he's going to need in the future. That seems much more difficult to learn, and much more important.

Overall, progress is there, but it is slow. Moe has to develop one step at a time and it can be painfully slow. I hoped that once he started talking, language would just explode. I hoped that once he learned that he can ask for things, he would start to get the concept of social communication, and he would just blosson. As a mom, I can't help but harbor hope that somehow, something will click, and this will all be behind us. That is unlikely and the best advice I've received so far is to make sure not to burn out in the first year. We still have a lifetime ahead of us.

November 9, 2009

Out there

I'm a pretty social person, and leaving work to become a full time stay at home mom hasn't been easy. I joined a mom's group before Moe was even born. Moe and I had activities planned almost every day. We took music classes, Gymboree, and had lots of playdates. We went shopping and out to lunch. Even with all of this, I still got lonely at home sometimes. I thought about going back to work, but decided it wouldn't be worth it since we wanted a second child.

Then Jelly Belly was born. I couldn't do as many activities with both of them, but planned to take a music class with both kids and take Jelly to activities when Moe was in school. The other moms in my group were also having babies, and our playdates expanded to include the newborns. Moe had some delays, but he was in school and getting help. It would work.

But things have changed. Moe wasn't quite ready for school and needed more. So now we're home. We're home all the time. And though I try to keep busy with projects around the house, finishing up a needlepoint project I started years ago, learning to sew, cooking, and of course blogging, I'm bored. Do you remember the movie LA Story with Steve Martin? At one point he writes on the window: Bored Beyond Belief. Yeah, like that.

So I try to get out when I can. We're going to keep one afternoon a week open so that we can all go to a playdate. But that is tough too because I see all the ways in which Moe is so different from the other kids. And as they get older, the differences become more and more obvious. I think it is important for Moe to be around typical kids on a regular basis, but it's not easy.

Even going out with other moms is hard. I really enjoy spending time with my mommy friends, but now that the kids are turning 2 and a half, and even 3, the conversations inevitably turn to the cute things their kids did and said, the little troubles they've gotten into. I listen, and I do really enjoy hearing about these kids I've known since they were babies. But it again reminds me of what I'm missing. When the conversation turns to me, it is "How are you doing?" and "How are things progressing with Moe?" It's depressing.

I haven't yet found a local community of parents with autistic kids, and even if I did, I don't want to completely immerse myself in that world either. I long to be out and about in the "real" world as much as I can, but out there I'm reminded of everything that is so different in here.

November 2, 2009

This one's for you, Mesaba Airlines ticket lady

This past week wasn't the greatest for travel news. First, there was the Northwest pilots who missed the Minneapolis airport. Then there was the blog post claiming that the TSA took a woman's baby while going through security. (The story has since been proven false.) Then there is the, up until now, unpublished story, "Family Voluntarily Takes 6 Flights," also known as "Let it Go, Mesaba Airlines Woman."

Our travels began last Thursday, as we made our way to the San Jose airport headed to LaGuardia via Minneapolis. This involved getting up at 4am, and gathering the following:
  • Two carseats
  • One stroller
  • Wheels to attach to the other carseat that makes it into a stroller
  • Three suitcases
  • Two backpacks
  • Two kids
We were prepared. We even had, I'm not kidding, a spreadsheet with our full itinerary, including when kids would need to eat, airport layouts, who would carry what, etc. Ha, ha, ha!! Such fools we were thinking we could have anything under control.

Trouble began before 6am. Our flight out of San Jose was delayed getting out. Then we had to circle the airport in Minneapolis. Jeff and I ran, each with a backpack and a kid on wheels, across the airport to make the connection, which was also delayed, but not long enough. It had just left. At the gate, we were informed that the airline already booked us on another flight to LGA, which was going to go through St. Louis. That was not going to happen. After some prodding, we were able to get a flight to JFK. Our bags, we were told, would still go to LGA.

So, we get to JFK, and make a decision to get on the shuttle over to LGA. It only took about a half hour and since we had an hour drive to our destination, we thought it would be worth getting our bags. We get to LGA only to discover our bags - you guessed it - were at JFK. Arrgh! We arrange to have our bags delivered to our hotel in Connecticut and get the rental car. (The bags did not arrive until noon the next day, but they did make it.)

Skip ahead to Sunday. We had a flight scheduled out of White Plains to Grand Rapids, via Detroit. We were hanging out at my cousin's house, and yes, we left a little late. Even so, we were standing at the ticket counter a full half hour before our flight was to leave and this airport is tiny. There are 2 gates. So we get to the counter run by Mesaba Airlines, Delta's partner for this small trip. When we tell the woman behind the counter we're going to Detroit, she says we're too late - we have to check in bags a half hour before flight time. She tells me it is 3:32. So we're talking 2 minutes. We were clearly rushing and had 2 little kids. She pushes my ID back at me and says "I'm not checking these bags."

Now, if you were a helpful customer service agent, you might say something like "You're running a little late and your bags might not make it. Let's get you on this flight and your bags may have to get the next flight out." But she chose the "I'm not going to do my job" route. I think she thought we were just going to leave. So I raise my voice a little, and ask "What can we do?" To which she says "stop shouting at me." Okay, I see what kind of person this is and even though I have some choice words ready for her, I chose to take the high road and apologize just so my bags don't end up, I don't know, back at JFK. She finally radios the guy who gets our bags on the flight no problem (because the airplane is like 10 feet from where we're standing), but has to remind me and him, and everyone else 100 times that I yelled at her. Which a) I didn't, b) I apologized for, and c) just do your job!

Okay, so we get through security with the kids and the stroller and the carseats and rush to the plane. As we are halfway to the plane, we realize Jeff FORGOT THE CARSEAT AT SECURITY. He runs back, gets the carseat, and we make it on the plane with a few minutes to spare.

We got to Detroit and I think our next flight was on time, but to be honest I may have blacked out from the stress. Anyway, I have never been so happy to be in Grand Rapids.

Fast forward to our return home on Friday. I checked in online and printed our boarding passes in the morning. Our flight was scheduled for 3:10pm but we were not taking any chances, and were ready to go at 1:15. Before we left, I thought I'd better check for delays, and it turned out our flight was delayed by 2 hours! So late, in fact, that we would miss our connection in MSP (even though that flight was also delayed). I call Northwest, which is now Delta, except it isn't because they can't find my reservation and have to transfer me to Northwest even though their "on hold" recording tells me that NWA and Delta are now one seamless airline. Huh?

Okay, stay with me. So the woman on the phone tells me they were aware of the issue and rebooked us on a flight scheduled to leave at 12:59, as in 20 minutes ago. But they never told us. How exactly was that supposed to work? But guess what? That flight was delayed too and wansn't going to leave until 2:40. So I hang up on her and we run to the car, rush to the airport, and we make the flight with time to spare.
Now we're back in Minneapolis with one flight to go, and you guessed it - it was delayed. For hours. People's entire lives were played out before us. I'm not kidding - we actually shared a retirement party cake with the gate agent. By the time we got on the plane the kids were an exhausted mess.

Both kids were remarkably well behaved and patient on every flight, buth this final flight was rough. They were so tired and they really tried their hardest to fall asleep. But for some reason the pilots and the crew on the plane felt the need to make an announcement about every 10 minutes, which would wake them up. So it wasn't fun. But we finally touched down back in San Jose, all our bags arrived (which was good because I left my car keys in my suitcase), and we made it home.

Now back to our regularly scheduled program.


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