December 29, 2009

Ups and downs

This past weekend was a mixed bag for us. Last week, Moe just wanted to bite everything. Although that seemed to subside a little, Moe seemed to be having a bit of a sensory breakdown, with some pretty manic highs, laughing and running around, and followed by bouts of intense frustration at everything an anything. Nothing in our usual bag of tricks (like deep pressure or a blanket swing) seemed to help. All yesterday morning, he wanted to be in the dark closet, or he would bury his head in my lap or in the couch. We had a 4 day break from ABA sessions, so maybe the change was having an effect on him. I don't know.

Sunday night, Jeff and I had a, ahem, "discussion," about what was going on. I, of course, worry that this was just the first indication of some serious issues we're going to have for the rest of Moe's life, and Jeff takes the view that all two year olds have rough times and that is why they call them the terrible twos. It's a stupid argument to have because no one knows. The night ended with me in bed with a terrible, vision-blurring, nausea-inducing headache which I called a migraine but since I don't really get migraines it was probably a stress headache.

On Monday, Jeff was back to work. We decided to have his OT session at the center where they have swings and stairs and other equipment. As I was telling his therapist about some of his behaviors this weekend, I realized some pretty amazing things happened as well.

First, Moe has really started taking an interest in coloring. He has colored before, but he wasn't really into it. Now, Moe will stand at his easel and draw with crayons or chalk for fifteen minutes or so. He'll pick a color, draw, stand back, admire his work, pick another color. He's very careful about where he's drawing and what colors he's using. It is so cute to watch. I have no idea what's going through his head, but he's clearly thinking about the choices he's making. At the OT session, our therapist watched him color and said his grip is above age level. (I know I shouldn't care about such things, but woo hoo!)

Second, Moe built a tower with LEGO's all by himself. He has never been interested in LEGO's at all. Not even a little bit. And he rarely stacks blocks unless he's almost forced to during a therapy session. But on a whim, I took out the LEGO's and he just stacked a really tall tower. See for yourself. He even put the man on top.

Lego tower

We were all very excited to see developments in those two age-appropriate activities. Like everything with Moe, he doesn't seem to practice things, make mistakes, and eventually be able to do them. He seems to just wake up one day able to do something he couldn't do before. It was like this with crawling and walking too. I wonder if he's been a bit unbalanced because he's going through some big developmental changes.

Finally, we spent some time practicing on stairs. We don't have any at home, so it has been a while since we've had a chance to see how Moe climbs steps. In October, Moe climbed the steps at his grandparents' house by bear crawling up them. More recently, I've had Moe climb steps holding my hand, but had to carry him down. So at the center, he practiced on a set of steps with a kid-height banister and after a bit of encouragement he did them on his own! I like his instinct to reach for a hand, but it was good to see that he could do it solo.

It was a good session and a good day to catch up on his progress. Moe is getting stronger and more coordinated. He is okay with color magic paints now (the consistency of vaseline), but not with shaving cream. He doesn't care much about stickers. I was hoping to get a few more pointers on what to do when Moe is having one of his meltdowns but wrapping him in a blanket seemed to work during session so next time I might try that.

December 25, 2009

Happy Merry Chrismukkah Day

We're not really a Christmas kind of family. I celebrate Chanukkah. And today just happens to be Jeff's birthday.
We wonder what it is going to be like for the kids believing that all the world's children wake up early on Christmas morning to celebrate Daddy's birthday.
So what does a half-Jewish, half-Christmas-birthday family do on Christmas?
We got up early and colored Daddy's card.
Coloring Daddy's card
We baked a Key Lime Cake. Oh my god this was amazing. I sprinkled some lime zest on the top, giving this a much more Christmas-like feel than I had intended.
Key lime cake
We played outside. It was a gorgeous day.
In the playhouse
We tried some new foods.
Avocados? Seriously?
This did not go over so well. But we recovered and Jelly Belly gave us a message of hope for the world as only beautiful babies can.
IMG_1824
We put the kids to bed and rounded out the evening with a delicious pea and mushroom risotto and a bottle of Two Mile Sangiovese.
Happy birthday, Daddy. We love you!
Jeff loves cake

December 21, 2009

What's your sign?


Moe is a Gemini. Although I don't know much about astrology, I do know that Gemini comes from comes from the Latin for "twins." I think this is fitting for Moe. His is a toddler, and he has autism. And at any given moment, I'm never sure which Moe I'm seeing.

All toddlers are mysterious twins to some degree. One moment they are perfectly happy and content, and the next they are melting down, unable to express new and more complex emotions, like jealousy. They long to be held like babies but insist on independence. This is what makes the twos so terrible; most parents would take that for granted. I look at every move Moe makes under a microscope. I'm forever trying to tease out from Moe's behaviors what is toddlerhood and what is autism.

For example, Moe has developed this new habit of screeching very loudly when he's excited. He also laughs for no reason at all, or so it seems to me. He doesn't nap anymore (though lord knows I try to get him to). Are these signs of a sensory system in disarray?

Moe has also been going through a phase where he really likes to bite things. He has a toy monkey that he has always liked to chew on, but lately he has wanted to bite everything: the couch, the bed, puzzle pieces, flash cards, even Jeff's shoulder once. It often happens when he's excited. Is this a delayed period of oral exploration? Is he looking for deep pressure sensations?

Moe used to really like to spin, and sometimes he still does. When he first started the center-based program, that was one of the things they pointed out to me as a reason he might require occupational therapy.

When another two year old screams in a restaurant, we tell him to be quiet or use his inside voice. When another kid bites someone, he might get a time out. If he makes himself dizzy, or doesn't like a certain food or lines up his toys or throws a temper tantrum, we don't worry about it. He's just being a toddler. But with Moe, I analyze and strategize and research. I read other blogs by parents of kids with autism to see if this is something their kid does or if it is a sign of worse times to come. It's exhausting and it's stressful. It's unfair, and probably entirely unnecessary.

No matter how hard I look, there's no crystal ball that will tell me Moe's future. Even the best charts won't help me read in the stars the meanings behind each of his behaviors. I know it wouldn't matter anyway, since we'd still be doing what we're doing. But if anyone does happen to discover a magic 8-ball that will tell me what to worry about and what to let go, please let me know.

December 8, 2009

Poop happens

Warning: this post is very mildly scatological in nature. If you'd rather avoid such topics, come back another day.

With all of the serious posts I've been writing, I thought I'd share some of the lighter side of my day yesterday.

Moe doesn't greet me when I get him up in the morning, saying "Mommy" or "good morning." I'm lucky if he even looks at me when I walk in. He's often singing or babbling in his crib, a place he definitely enjoys hanging out. But of course, I always greet him with as much enthusiasm as I can muster at 7am. So yesterday morning, I went to get him up. He looked me straight in the eye, and said: "Poop."

I have no idea why he said it. He had a clean diaper when I got him up. Maybe he had to go and wanted me to leave him alone? Maybe I usually ask him if he has a poopy diaper when I get him up? I don't know but it sure was funny.

That evening, Jeff was on the later side getting home since he had to get Berkeley from doggie day care, and I was starting to get the kids ready for bed. He came in while I was giving Jelly Belly her bottle. He looked in and said "Berkeley was in time-out today. I'll let you read about it." I immediately start to think the worst, that she's getting in fights and they're not going to let us send her anymore. And she has her evaluation for a new place on Thursday, and we want to maybe start sending her 5 days a week, and what will I do if she can't go?

So I finish with Jelly and go take a look at Berkeley's report card. The line says "I was in time out for...eating poop." Super.

And yes, I know. With day care, evaluations, report cards, and time-outs, Berkeley might as well be another child in the house.

December 7, 2009

Control

I've been a little lax about posting lately. It's not that I haven't written anything. It's just that all my posts sounds so whiny. I hate whiners. It is so unhelpful to just complain about things. But that's exactly what I've become these last few weeks: a whiner.

A lot of relatively small, but fairly annoying things have happened in the last few days. Nothing to call home about, but frustrating nonetheless. For example, Saturday was a gloomy day, but we planned to go out to dinner and go see the Festival of Lights in Vasona Park. First, Moe had a major meltdown at lunch, which ended with both of us in frustrated tears. Then he didn't nap, as usual, but around 3:30 he just crashed, falling asleep on the floor in the living room. I moved him to the couch, where he slept until I forced him awake at 5, but we were clearly not going out to dinner. Which meant that I had to make something to feed him and ourselves, and clean up, and there I go again - whining.

Another example: Our doctor's office sent out an email on Sunday announcing that they just received a small supply of H1N1 vaccines and were opening their clinic to all patients 6 months-17 years old, and their caretakers. We rush around to get there, only to find a line out the door and into the parking lot. We left. I didn't want to wait in the line with the two antsy kids only to have them run out of the shots before we got in. Frustrating! Annoying! Who are all these people? Whine, whine, whine.

Final example (though I could go on all day). I've been feeling the need to start exercising again, and this morning was going to be day 1. I got up at 6:30 (after having gotten up to feed the baby at 5:30) to work out with my Wii EA Sports Active. For whatever reason, the game wasn't registering my movements, so I couldn't progress with the program. I had no patience (it was still dark out, after all), and after doing probably 40 lunges trying to get it to register the required number, I gave up. And what did I do? I went to Jeff and whined about it.

I know why I'm whining. I don't like how life is right now. I didn't choose this path. I'm jealous that Jeff gets to go to work everyday and come home to ask "how did it go today?" That, no matter how stressful his job is, he can escape autism for a few hours every day. I'm angry that Moe isn't talking to me, won't communicate with me, and that when he melts down, I can only guess at what is going on.

A few years ago, I had a job that I was really starting to hate and I felt like I had no power to affect any change. When things got bad, Jeff reminded me that I could quit at any time. As soon as I gave myself permission to leave, things immediately felt better. But what do I do now? There's nothing to leave. I can't quit autism (though I desperately want to).

I recognize that giving myself permission to quit was about finding control. Unfortunately, I don't have much control over what is happening in my life right now. But I do still have control over one thing: my attitude. And I firmly believe that attitude is important. I'm not saying I think I can cure autism with positive thinking. But I do know that if you think something is going to suck, it probably will.

So I'm going to do my best to control my attitude. I'd like to be able to wake up in the morning, and really believe that it is going to be a good day. I may have to fake it sometimes, and I'm sure I won't be successful every day. And at the end of the day, even if it wasn't a good day, even if the day was frustrating and exhausting, the Wii didn't work and the kids didn't nap when they were supposed to, at least I can quit whining about it.

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.

October 13, 2009

ABA Has Begun

Week two of the intensive home ABA program has begun. I'd say it is going well so far, though it has disrupted all of our routines. Jelly Belly is, at least for now, just as happy at home as she is when we're out, and Jeff is able to come home for lunch one day a week so I can continue to take her to our music class. Berkeley is, for the most part, being fairly well behaved (outside of the barking every time anyone comes and goes). She has been getting lots of treats and new things to chew on, while I try to keep her out of the way. I have been filling my days with the things required to run a house: laundry, dishes, and shopping - I mean, research on the internet. I'm reading, finishing up a needlepoint I started before Moe was born, and setting up my sewing station. I haven't yet sewn anything, but the sewing area looks pretty inviting.

In many ways, things aren't that different for Moe than they would be for any other two year old. He gets up and has breakfast, plays for a couple of hours, has a snack, plays some more, eats lunch, takes a nap, has a snack and plays some more. Then it's dinner, bathtime and off to bed. Having people in and out of the house all day is strange and a little uncomfortable for me, but right now Moe just gets a new playmate every few hours.

The first couple of weeks of therapy are considered "pairing." The therapists get to know Moe and he gets to know them. They are working with him, but haven't been pushing too hard. This week, he is also being formally evaluated on a number of skills which should set a baseline for tracking progress. Friday, we have our first "clinic," a meeting of the entire team, including us, the program director and supervisor, and all of the therapists. I think this is where we start to design the formal programs that we will all be working on with Moe.

So far, I like that the program feels like play. The therapists use a developmentally based approach, which can be worked into our everyday lives. I'm learning good techniques from the therapists and I think the program will be good for Moe. I'm a little concerned that he doesn't have any interaction with other kids most days, but as the program progresses, we can add in social and playgroups that are also run out of the center that manages the ABA.

I've also started reading a great book called Overcoming Autism, co-authored by Lynn Kern Koegel, one of the founders of Pivotal Response Training. Dr. S had recommended PRT for Moe, and this program, though not strictly PRT, uses a similar approach techniques, from what I understand. We all have a lot to learn, but I'm feeling good that we are headed down what feels like the right road.

October 5, 2009

How about them apples?

This has been a tough few days for Moe. He's finally getting his last two top molars and he has a little bit of a cold. He's been waking up very grumpy. I understand his frustration, but when he's grumpy, I'm grumpy. It's been challenging.

Yesterday, Moe woke up pretty much hysterical. He was frustrated and clearly trying to say something. Apple? Yes, he's saying apple! Okay, so I run to get the applesauce. Nope, not it. More frustration, more hysterical crying. Now he's saying something else. "I want?" I have thought that he's tried to say that in the past, but was never sure. At school, they have been working with him on saying whatever it is that he wants ("more," "cracker," "apple," etc.), but just the label, or sometimes even eye contact, is enough for him to get it. The more verbal kids, however, have to say "I want." Now, Moe may often seem tuned out, but he picks up a lot and often surprises me with what he knows. So he's crying hysterically, saying "I want (sniff, sniff, cry, cry) I want!" And then, he looks right at me and says "I want apple!"

Oh. My. God. Moe just: 1. Said a full sentence, and 2. Told me what he wanted. HUGE!

Now I panic. I don't have any apples, and he didn't want the applesauce, which is what he usually means by "apple." Then I remembered I had bought some packages of freeze dried apple slices that I sent with him to school last week. Moe ate two entire packages.

October 3, 2009

Anxious

In the English language, words often have multiple meanings. Take the word "anxious." There's anxious, like "anxiety." As in, "I'm anxious about my upcoming surgery." Then there's the anxiety that connotes a restless excitement, as in "I'm anxiously awaiting my upcoming trip to the Bahamas." (Or in my case, this week's episode of Mad Men.) This duality of meaning has never made much sense to me before. But right now, I get it.

We start Moe's in-home therapy session next week. His daily schedule looks like this:

8:00-10:00 Therapy Session 1
10:30-12:30 Therapy Session 2
12:30-3:30 Lunch, break, nap
3:30-5:30 Therapy Session 3 (some days)

Plus an extra session two days a week for OT and speech.

I'm anxious about having people coming in and out of the house all day. How will it impact us? I already cringe whenever the doorbell rings because our dog goes insane. Is it going to be like that every time or will she start to get used to it? Am I going to spend all day, corralling the damn dog to make sure she's out of the way?

I'm anxious about how hard Moe is going to be working. Will he still be the fun-loving kid he is now? Or will we somehow break his spirit? Are we doing the right thing pulling him out of the center based program he is finally used to? How will ever get to socialize with other kids?

I'm anxious about my own well being. I'm going to be stuck at home a lot. Will I ever get out? It is so much harder to run errands with both kids. What am I going to do at home all day long?

I realize I'm just dreading the unknown. Of course, we'll work everything out. I'm hiring a dog walker. Moe will still be himself, charming all of the therapists with his giggles. We'll go to playdates on lighter days and I'll find a hobby or two. Maybe start cooking things that take longer than 30 minutes.

Mostly, though, I'm anxious (the excited kind) to see all the wonderful progress I know Moe is going to make. As Moe's final report from the center said "He is moving in the right direction. Hooray for Moe!"

October 1, 2009

Five months

Heads-up: this post isn't about autism. It isn't much about Moe at all, but it is what I'm feeling today, so I'm going with it. It is about breastfeeding, so if you don't want to read about that, I suggest you stop here.

When Moe was born, he wasn't a good nurser. He wasn't quite full term and was a very sleepy guy. Plus, I had no idea what I was doing. So breastfeeding was stressful, though I put a lot of pressure on myself to keep going. The plus side to this, however, was that he took a bottle right from the start. We started with one bottle at night of pumped milk. As time went on, that bottle became formula. Then I added a second bottle of formula during the day. With each bottle I added, I felt a sense of freedom and relief. I loved watching those ounces drain away, not having to guess how much my little guy was taking in. I stopped breastfeeding at about 4 1/2 months.

Jelly Belly, on the other hand, nursed like a champ. From the first time we tried, she latched right on. There were a few days where it was a little painful getting started, but after that, it was the easiest and most natural thing in the world. And this time I had the benefit of experience. So I planned two things. First, I would not pump. Second, we would introduce a bottle right away so Jeff could help feed her at night. Well, you know what they say about plans. I didn't ever pump. But Jelly would not take a bottle. We tried and tried, but she just didn't want it. Occasionally, she would take an ounce, but never more.

This hasn't been that much of a problem, but I'm going out of town for a weekend in October without the kids, and Jeff needs to be able to feed the baby. So last week, I decided I would start bottle feeding Jelly during the day. I figured if she was hungry enough, she would eventually eat. My plan was to feed her with a bottle during the day and then nurse for the night time feedings. (She's a really good sleeper and I didn't want to mess with bed time!) It worked like a charm. Unfortunately, it seems to be all or nothing with this girl. Now she doesn't want to nurse at all anymore.

I'm feeling a little bad about this. I tried to have one last time with her, to say goodbye to the experience. But she wouldn't take it. So I guess we're done. Although it is a little sooner than I had planned (there's that "p" word again), I'm okay with this, but a little sad. We aren't going to have any more kids, so this phase of my life is over. While I was pregnant, and then breastfeeding, I had this sense that my body was doing the thing that it was actually created to do. I am happy to be gaining back some independence, but it is hard to give up the one thing that only I could provide to Jelly.

As Jelly outgrows her clothes, I am happy to have the garage space back, but sad to see those cute little outfits go. As she learns to sleep through the night, I am ecstatic to know I'll be getting sleep again (most nights), but missing our quiet moonlight strolls down the hall. It's going by so much faster this time. I'm less nervous, but more distracted. I have to remind myself to take it all every day because as challenging as these early days can be, it is the last time I get to have them.

September 28, 2009

Prepared for the fight

After we got the official diagnosis and recommendations from Dr. S, we started bracing ourselves for a fight. We were requesting yet another change from the regional center, this time asking for 25 hours of intensive home therapy, including ABA (applied behavior analysis), speech, and OT. We weren't sure if the new request would be approved, and I started researching what we would need to do to get coverage from insurance.

What I found was appalling. Most insurance companies, it seems, make it nearly impossible to get coverage for these services, considered "educational" rather than medical in nature. One document I read from our insurance company, for example, says they don't cover "experimental or unproven" therapies, such as ABA, even though their own website lists ABA as the autism treatment recommended by the American Association of Pediatrics. They make you go in-network and only to licensed providers, but often only have one provider whose practice is probably full. You get the idea.

Fortunately, our request was approved and our new services are going to start next week. Although I know this is the best thing for Moe, I am a little nervous as to how this is going to affect our family life (and my sanity). I'll be getting the complete schedule later this week, but therapy blocks, which take place at our house, are scheduled from 8:30-10am, 10:30-12:30, and 3:30-5:30. Moe is booked every morning block and some afternoon blocks.

I'm thankful that I won't have to fight the insurance company this time around. I feel for the many families that are fighting on multiple fronts to get the services their kids need. I know many are fighting to get autism coverage included in healthcare reform, and perhaps someday I will be able to help in this fight. For now, I need to devote my time and energy to the work that needs to get done here: helping Moe grow and thrive.

September 20, 2009

Who do I tell?

When Moe was born, I joined a mom's group. I found that being a stay at home mom was sometimes quite lonely and isolating and the group was a way to meet other families in the area and get out and have some fun with our little ones. A small group of us met for playdates every Thursday morning, but with Moe's busy schedule, I had to stop going a couple months ago.

On Sunday, one of the moms hosted a potluck breakfast at her house. I was excited to see everyone, but a little anxious about going, since it was the first time I'd be seeing the moms since "coming out" about Moe's diagnosis, via this blog. I wasn't sure who knew and who didn't, and if I needed to say anything. I certainly wasn't looking for sympathy. I felt like it would have to be mentioned, but I really just wanted a nice morning out with the family.

I shouldn't have been nervous. It was a great morning. I am fortunate that the moms in the group are all smart, educated, caring women who have always been supportive of each other. With the women I know well, we talked about the blog and about Moe a little, and then we talked about other things. With the moms I don't know as well, we talked about our newborns and babies on the way, and whatever we would always talk about. Moe did great too. I tend to forget that just because he now has a diagnosis, he isn't actually any different than he was before. He did his own thing, exploring the yard and playing with the toys. For the most part, he just seems a little younger than the other kids. And at just over 2 years old, all of the kids have their challenges and quirks. In isolation, these are just normal toddler behaviors.

This outing got me thinking. What do I tell people? Should I say anything? It is hard not to, when we're catching up, talking about things like preschools and how we're spending our days. If I don't say anything, I feel like I'm hiding something. On the other hand, not everyone needs to know. If someone asks me how Moe is adjusting to having a big sister, I should be able to simply answer the question. If I take Moe to a music or gym class, shouldn't we just be able to participate at the level that is comfortable for us? But what about someplace like the dentist, or when interviewing babysitters?

Does having the people around me know that Moe has autism make it easier or harder for me? For Moe? I tend to be an open book on this kind of thing, but I don't want Moe to have a harder time than necessary, or have him treated any differently than other kids, unless it will be helpful to him. I think it may take some time for me to figure this one out.

September 16, 2009

Brown Bear

As I've mentioned in previous posts, Moe has been making tremendous progress. He has been getting some great reports from school - asking for "more," singing songs in class, giggling at the teacher and other kids when they are being silly, and just being more verbal and present in general. I often post these little updates via Twitter. You can see my tweets to the right of this blog.

Our case manager at the Regional Center is reviewing the ADOS results and we're optimistic about getting our new services approved quickly.

Here is a video I took of him yesterday reading Brown Bear, Brown Bear. Enjoy!

video

September 15, 2009

The Specifics

On top of everything else, Jeff and I have started attending an educational series at Stanford for parents of kids with autism spectrum disorders. During our first session last week, we discussed the various types of spectrum disorders, including Autism, Asperger's, PDD-NOS, and the characteristics of each. I thought it would be interesting (for me, anyway) to match Moe's behaviors against the DSM-IV criteria for autism.

The DSM lists 12 criteria for pervasive developmental disorders (PDD), and how many and what type of these criteria a person meets determines the medical diagnosis. There is also an educational category of "autism" that may allow a child to receive certain services, but a child in the educational category may or may not meet the medical definition, and vice versa. Clear?

The criteria are in three categories: Social Impairments, Communication Impairments, and Restricted Routines and Interests (Repetitive Behaviors). A person with Autistic Disorder must meet 6 of the 12 criteria, with at least 2 under social, 1 under communication and 1 under routines.

Social Deficits
  • Impaired nonverbal behavior. Yes. Wesly does not do a lot of pointing or use eye contact to modulate social interactions.
  • Difficulties developing age-appropriate friendships. This is a little unclear since I'm not sure 2-year-olds really have friendships. But certainly, Moe doesn't interact with other kids his own age the way his peers do.
  • Trouble sharing interests with others spontaneously (bringing objects, pointing out objects of interest). Yes, although Moe does do this sometimes, and we are starting to see it more.
  • Lack of social or emotional reciprocity. Like the last one, Moe does show reciprocity but only very inconsistently.
Communication Impairments
  • Delay in the development of language. Yes. Although Moe's language abilities are starting to pick up, this was the big sign that something wasn't quite right.
  • Inability to initiate or sustain a conversation. Doesn't seem really relevant, per above.
  • Stereotyped language (echolalia, repetitive or idiosyncratic speech). Again, not relevant.
  • Lack of pretend or social imitative play. Yes. Another huge tip-off and with language, probably the biggest indicator. During his assessment, he was interested in the baby doll, but mostly how its eyes flicked open and closed, and wouldn't put the baby to bed or have a birthday party for the baby. We are starting to see some growth here. Moe spontaneously "fed" Anabelle some toy peas today and will occasionally talk on his toy phones.
Restricted Routines & Interests
  • Restriced interests (preoccupation with a few interests). Not sure. Moe certainly has his favorite toys that he returns to again and again, but I think this is probably something more relevant to older people.
  • Adherence to nonfunctional routines. I don't think so.
  • Stereotyped motor mannerisms (hand flapping or waving). No.
  • Preoccupation with sensory aspect of objects (spinning wheels, visual inspection, rubbing things). Yes. Moe loves spinning the wheels on toy cars, and checking out how everything works..He will also play with toy cars as cars, but mostly he likes to examine them.
I just compared my observations above with what Dr. S. listed as Moe's criteria for autism, and they match exactly. So I guess that shows that the assessment was accurate.

Some of these characteristics can also be strengths. It isn't inherently bad that a child likes to inspect things and understand how they work. Autistic kids are often very focused and can learn a lot about the topics they are interested in. It is the combination of traits, however, that indicates the problem. The language and social communication skills are our biggest concerns.

The above list does not describe how Moe was diagnosed. Dr. S used a standard test called the Autism Diagnostic Observation Schedule (ADOS). Moe was then given scores for communication skills, reciprocal social interaction, play, and stereotypical behaviors and restricted interests. His numbers on these were also consistent with a diagnosis of autism.

I should note again that I am not a doctor. The above exercise was just one I found interesting to catalog our specific areas of concern. If you think your child may have delays or you suspect autism, talk to your pediatrician. DSM-IV summaries courtesy of Linda Lotspeich and Jennifer Phillips from the Stanford Autism Center at LPCH.

September 13, 2009

Reactions

It's been a few days since the formal diagnosis and I've been thinking a lot about what that means for us. The diagnosis wasn't a surprise and in truth I've had a couple of months to come to terms with things. Still, the words are on paper now. It is official: my son has autism.

Strangely enough, I feel relieved. The evaluation process is behind us. Though I would hardly say that the worst part is over, we know what we are dealing with. We have a doctor who is on our team and will help us move forward. There is so much we cannot predict about the future that just having something concrete (as concrete as an ASD diagnosis can be), is reassuring.

I also feel like my "mommy gut" has been validated. For so long, people told me "Moe is just moving at his own pace" or "he's just a late bloomer." But that didn't seem right to me. I felt like it was more than that, though I desperately wanted to believe that I was just being a worrying mother, overreacting to every behavior that was in some way different from the other toddlers around us. If there is a lesson in this, it is that I am The Mommy. I will trust myself.

Which brings me to my next reaction: action mode. Who do I call? What do I read? What groups do I join? I must fax, call, email the right people; get the new therapy plan in place; make appointments, attend lectures and watch videos. I have immersed myself in reading about getting coverage from Early Start and working with insurance. I am reading blogs. Did I mention that I don't even have the copy of the written report yet? I am all Autism, all the time. I do realize that this is not healthy, and "forced" myself to watch a few episodes of Project Runway. Trashy TV is now a required therapy. (For me, of course, not for Moe.)

As I write this, it is obvious that I am using the above activity to keep from thinking about how sad all of this is. Because I am so, so sad. This wasn't how it was supposed to be. Hasn't my family been through enough? Without a good sense of what Moe's future will be like, I haven't quite let go of my hopes and dreams for him, (which include, but are not limited to: a degree from Cal or, if he insists, an Ivy; a fabulous career as an architect or something equally creative yet respectable; and a lovely wife or partner of his choosing). Will I need to adjust those dreams? Is everything going to be hard for him? For me?

And there's Jelly Belly. Beautiful, perfect, blue-eyed Jelly. Will I have the energy to give her the attention she deserves? If I am so focused on Moe, will she have to find other ways to get my attention? And will Jeff and I have the strength to devote to each other at the end of the day? Will I ever get a life of my own back and am I a horrible mom for even thinking about myself?

This hardly scratches the surface. There is also guilt, anger, frustration, grief, horror, pain, disbelief, denial, did I mention guilt?, blame, fear, and exhaustion. But - and I cannot say this loud enough - there is LOVE. I love my Moe as much as any mother has ever loved her son and nothing will ever take that away.

September 9, 2009

Tomorrow Will Not Be Easy

Tomorrow is the big day, and it is not going to be easy. I'm really anxious to hear a real diagnosis, but at this point I'm ready. But here is why tomorrow is going to be a rough day:
  • Get kids up, fed, dressed, and out of the house early so I can bring Jelly to a friend's house who is going to watch her. Must remember to pack diaper bag for the girl and separate bag for the boy.
  • Meet Jeff up at Dr. S at for 45 minute appointment. Last time she ran late.
  • After doctor, Jeff brings Moe back home to make sure he is on time for speech therapy.
  • Meanwhile, I go pick up Jelly and race back home.
  • Moe will skip school tomorrow. During naptime (ha!), I prep everything for the evening - dinner, pajamas out, bottle ready, etc.
  • Babysitter arrives. Give her quick rundown then leave the house.
  • Meet up with Jeff for an autism lecture series we're attending.
  • Back home for the night.
Wish us luck.

Jeff gets the husband of the month award, for taking Moe to the doctor today to get a clean bill of health to back to school (which he got). But the appointment did not go well. So, now I'm concerned that Moe is going to be freaking out when we go back to the same office tomorrow. Hopefully, once we get in the room and he sees the toys he'll settle down. I'll bring an arsenal of tools, including water, snacks and Monkeeey! to distract him.

To end on a positive note, he got a nice report from school today. They said he was talking a lot, and saying "chugga chugga choo choo." Too cute. He aslo waved during the good bye song for the first time ever. Then, in the car on the way home, we were listening to his Music Together CD. He started tapping his legs during the Hello Song, which is what we used to do in class! And let me tell you, my boy has rhythm.

September 7, 2009

Labor day weekend

Despite Moe coming down with croup, this has been a pretty exciting weekend. A couple of interesting things happened.

First, we've been working on drinking from an open cup, so Moe was sitting at the table with a dixie cup of water. I gave him a graham cracker for snack. He took the cracker, dipped it into the water, and said "dip dip!" We're not quite sure where Moe picked this up, but it was great - and now he's enjoying dipping all sorts of foods (chicken nuggets in ketchup, pita bread in hummus). Unfortunately, he doesn't actually want to eat anything that has been dipped, since the food has now clearly been contaminated with whatever it was dipped into.

The second thing that happened really surprised us. I'm not sure if it is because he has been sick, or just because, but over the last few days Moe has been even pickier than usual about eating. So while I was trying to get him to eat something, I gave him two crackers. He took one in each hand and said "one two." We couldn't believe it!

In general, Moe has been starting to really imitate a lot of words that we say as well as other actions that we do. He said "pita bread" during above dipping exercise. Yesterday, when Jeff told Moe it was time to say goodnight to Mommy, he ran right in to me with a huge grin and lots of eye contact. We see progress, though it is sometimes slow and inconsistent.

On the heels of all of this great progress, however, we have the second half of the ADOS assessment on Thursday. After that, we will have our official diagnosis. At this point, we don't expect any surprises. We are coming to terms with the word "autism" and realize that this diagnosis is going to help us get the services we need. It is also a little bit of closure for me - we know, at least in part, what is going on with him and will have a path to move forward. Then it is back to the regional center to once again adjust our IFSP.

Finally, I want to wish a happy labor day to all the stay at home moms out there. We may technically be unemployed, but we work harder than anyone else I know.

September 6, 2009

Deep breath

I've been working on a post for several days now, the gist of which is this: as someone who has experienced great personal loss, I should be more thankful that Moe is healthy and happy. But even though I know that, I can't help but feel sad for what Moe's future may hold, and that just being alive and well isn't enough. I want him to have everything.

Then on Friday night, Moe woke up crying, struggling for breath. He was wheezing and as I held him I could feel his chest pulling in deep as he tried to take in air. Jeff took Moe to the emergency room, where they gave him a steroid and had him breathe in a fine mist. He is fine - just a case of croup.

But what a wake up call! I've been feeling so down lately, worried about all of the bumps in the road ahead. Of course, I still want Moe to have everything, and it is hard to know that things may not go as smoothly for him as for other kids. But he's going to be just fine. Now that he is breathing easier, I am too.

August 31, 2009

Dad's day at school

Jeff went to school with Moe on Friday to observe the class. Parents are encouraged to come and observe/participate once or twice a month, but it has been hard for me to do because of Jelly Belly. The last time I went, Moe was only a couple weeks into the program.

Jeff had a number of interesting observations, but the primary one is that Moe probably doesn't belong there. Moe does great when he is getting one on one attention at the center but as soon as a larger group is required, he shuts down and tunes out, looking out the window or staring at the lights. The student/teacher ration at the school is 2:1, which is fantastic, but may not be enough for Moe right now.

At one point, Moe was in the fine motor skills room and Jeff noticed that he was looking at an alphabet puzzle. Moe put all the pieces back in the puzzle (with a little help), but he could say all of the letters, including ones we hadn't heard him say before, like X and Z. The staff got a kick out of this, but they may not have seen this if Jeff hadn't pointed it out.

That's not to say the program has been detrimental in any way, but it probably isn't right for him. Jeff spent a lot of time talking to the director of the program and she agrees. This has been the most frustrating part so far. It has been hard to know what is the right thing, and it is hard to be patient with trial and error when valuable time is ticking away.

Meanwhile, we start individual OT on Monday and speech on Thursday.

We also meet with Dr. S on Thursday for the first half of the ADOS-1 assessment, which will eventually lead to a diagnosis. With or without an autism diagnosis, we need to get a very clear and specific recommendation from Dr. S so we can go back to SARC and request another change. We need to know what we should be asking for. And if we can't get the amount of one on one services we need, we'll have to go through insurance and/or pay out of pocket. We will do whatever we need to do.

For posterity, here are some of the things Moe has been up to lately:

  • More animal sounds (moo, neigh, woof, elephant, monkey, rooster). Loves the "see and say" toy.
  • Lots of "woof" when he sees dogs, real or in books
  • Saying words like "ball," "pizza," "bubbles" and "turtle."
  • Knows all letters of the alphabet
  • Says bye-bye, blowing kisses (occasional)

August 27, 2009

Windmills

When I first told one of my best friends that Moe likely had autism, she told me a story. Imagine you are planning a trip to Italy, she said. You plan the travel, read the guide books, carefully pack. You even learn some of the language. You are ready. But when you get off the plane, you are in Japan. Japan is lovely. You've always wanted to go to Japan. But it wasn't what you were expecting.

It turns out that this is a variation on what I now know to be a very well known essay about life with special needs kids called "Welcome to Holland." You can read the full text here.

Recently, I saw a similar essay, called "Welcome to Beirut." Click here to read it. Go ahead, I'll wait. Great. This is a much tougher version of events, and in some ways feels more accurate: full of anger, fear, and confusion.


So which is it? Are we on vacation or at war? Did we take a different fork in the road and just need some time to acclimate? Or did we land in the middle of a war we never asked for in the first place? I suspect, it is a little of both. Right now, I think I identify a little bit more with Beirut. I feel valuable time ticking away. I want out! I don't know where to turn, which enemy to battle first.


On the other hand, we're doing pretty well. We've managed our first set of changes with the regional center. The approvals have gone through and we're scheduling the speech and OT. And through all of it, Moe is improving. He is starting to use words. He is engaging more, even if just a little bit. And let's not forget Jelly Belly. She looks at Moe like he is the coolest thing ever! Like a windmill. Or a tulip.


Photo from fhisa. See original photo on flikr.

August 24, 2009

High Achiever

image Nothing motivates like being told you are doing a good job. In school, you get good grades, advancing every year to the next level. In the workplace, you get a good title, promotions, and acknowledgement from your co-workers. But what about when you are a parent? No one is there patting you on the back every step of the way. Your kids certainly don't thank you for being the best mom you can be. No one is there to promote you from Mommy to, say, Senior VP of all the Mommies. So most of us get the positive feedback we need by watching our kids grow and thrive, blowing past milestones and turning into the adorable, smart, perfect children we imagined they would be.

As a former project manager, the term "milestone" is one I'm quite familiar with. We used milestones to track success on a project, knowing how on- or off-course we were to getting our product done on time. So for me, when Moe isn't meeting milestones on time, I feel a sense of both panic and stress. I must get this project back on track! If I don't, haven't I failed at my job?

Of course, my son isn't a "project." He is a child, one who is growing and developing at his own pace. There is no real deadline here, just as long as we keep moving forward. But just as Moe's mind works in its own way, my mind isn't good at taking things one step at a time. I need to see the path charted out in front of me, linking one step to the next until we reach our end goal.

So what is that end goal? Our IFSP has very specific goals for the next 6 months, skills that we want Moe to acquire such as taking off his own shoes, drinking out of a cup, or identifying certain objects 4 out of 5 times. Reaching these goals will be true accomplishments for Moe. But there is one goal that I am hoping for. It is not on any form or list of developmental milestones. It will not help him succeed in school. This goal is for me. When I pick Moe up from school, I want him to acknowledge that I am there, running up to me and shouting "Mommy!" like the other kids do. That is the pat on the back I need, promoting me to top dog, CEO Mommy.

August 21, 2009

A New Plan

After we met with Dr. S, we started a small flurry of activity to try to get Moe some one on one therapies. We found out that the regional center (SARC) office has their staff meetings on Thursdays so we wanted to make sure that we got on the agenda for that week.

First, we had to fax the doctor's report to our service coordinator (SC) at the Regional Center. Second, we had to make sure all of the reports and recommendations made it to the regional center by Thursday's meeting. Moe had already been observed by the occupational therapist at school. A speech & language pathologist was also going to see Moe. We had to make sure that their reports, as well as the school director's recommendations, were completed and faxed to the SARC. It turned out that those reports were not actually going to be ready in time, but we encouraged our SC to make sure to discuss Moe at the meeting. They did.

As a result, the regional center sent their own psychologist to observe Moe at school. That happened on Monday. We had a phone call to review yesterday.

Everyone had talked to everyone else (including our Dr. S and the SARC psychologist). They agreed that Moe should have more individual treatments, so now he is going to have one hour per week of speech & language and one hour of OT. In addition, we are going to start sending Moe to the school 5 days a week.

We are hopeful that the one on one therapies are going to be really beneficial, espeically in helping Jeff and I know what we should be doing at home. Our only complaint about the learning center has been that it has been difficult to get a lot of feedback on how he is doing, and where we can be helping, so I'm looking forward to having a relationship with the therapists who will be working with Moe.

Our concern with the new plan (called an IFSP) is that Moe is only getting 2 hours a week of one on one time. Dr. S seemed pleased with the changes, but was a little vague. SARC agreed that if the therapists think he needs more, they can request more. In addition, if Dr. S does give an autism diagnosis, then more changes can be made.

So what's next? I'm working with SARC to get the new plan scheduled. We have our next appointment with Dr. S in 2 weeks.

August 18, 2009

Progress report

Since my last post was so long, I'll try to make this short. In the past 2 weeks or so, Moe has showed some real progress. Although he is still inconsistent with what he does, I'm encouraged that he has been using more words and verbal communication. I'm especially excited that he has used some words or sounds completely unprompted, rather than just echoing something that one of us said.
  • Signs for "more" occasionally
  • Said "juice" while drinking a juice box
  • Said "baby" when looking at Jelly Belly
  • Pointed to Jelly's belly button when asked

  • Blew me a kiss when I got him up from a nap. Blew a kiss to Grandma.

  • Played with phone - held up to ear and pretended to talk

  • Reading books out loud (this is too cute)

  • Waved bye-bye

  • Ran up to me at the park with a huge grin on his face and looking me right in the eye

  • Said "bubbles" when he saw a picture of a boy with bubbles

  • Saw a cow and said "moo"

  • Saw a toy dog and said "dog"

  • Said "pizza" when he was eating pizza (this one was in response to us saying it)

  • Said "peek a boo" when I found him hiding behind the curtains (totally unprompted!)

  • Today, we went to Jeff's office for lunch and as we pulled into the parking lot he said "Daddy"

Each of these are little things, but I hope they are starting to add up to some bigger progress. We're working hard to get him some individualized services ASAP. I'm hopeful that it will help speed things up even more.

August 17, 2009

How did you know? What has happened so far?

The suspicion that your child may have autism doesn't just hit you one day. It's not like you get a blood test and you know. There are just little clues that happen over time, and things eventually start to add up.

Moe's development up until he was about a year old seemed perfectly normal. He wasn't late on any milestones. Moe was always independent, and was (and still is) very curious about how things work. We thought these were all good things.

Moe was a late walker, and I'm not sure if that in and of itself means anything. He didn't walk until he was 18 months old, but when he started, he could just do it and gave up crawling completely.

The real clues started before that, when he was about 14 or 15 months old. Moe wasn't talking much. He had a few signs that he would use. He would say a few words regularly (like banana and baby), and had many other words and animal sounds, but his use was inconsistent. Gradually, he seemed to stop using them altogether. Moe doesn't respond to his name. These are the primary reasons we took Moe to see the pediatrician just before his 2nd birthday.

In addition, around the same time (14 months or so) what seemed to be his strengths started to feel more like odd behavior, especially to me since I was always around other kids his age. Though I tried not to compare, you can't help but notice when your kid is a different. From a very young age, Moe could occupy himself for long periods of time, reading books or playing with cars, which seemed great. But as the kids grew older, the differences became clearer. At playdates, when other kids were chasing each other around or playing side by side, Moe would do his own thing. He liked to explore the houses or play with toys by himself. Sometimes he would get fixated on doing something, like opening a sliding door. He would get very upset if someone needed to interrupt him to get through the door.

Still, we weren't sure if maybe Moe just had an introverted personality. It is hard to know the line between temperament and problematic behavior. If it wasn't for the speech delay, I'm not sure we would have been too concerned.

We would look at the autism screening checklists online and we just weren't sure. Moe did sometimes use words, and sometimes point, and sometimes make eye contact. He would point to body parts and to pictures in books. He does communicate, often using our hands to take us to things and lead us to where he wants to go.

When we went to his pediatrician (Dr. G), she didn't seem overly concerned about ASD, but suggested we get in touch with Early Start for an evalutaion for speech therapy. The evaluation was a disaster. Moe wouldn't show any of the skills that he had, but he clearly qualified for services. Our regional center, SARC, who administers the services in our area, contacted us and approved him for a center-based program. They work not just on speech, but also on socialization and self-help skills, like using a spoon and taking off shoes. He has been going to the center 9 hours a week since June 3.

Not satisfied with the Early Start eval, Dr. G referred us to a developmental pediatrician in her group, Dr. S. You can read all about that visit in an earlier post, A Diagnosis.

Although we have two more appointments with Dr. S., she thinks Moe needs about 25 hours a week of one-on-one therapies, and wanted us to contact SARC right away. So there was a lot of back and forth, and one of SARC people observed Moe at school today. We're currently waiting for reports from the Occupational and Speech & Language therapists at the center as well as the report from SARC.

So that is where we stand right now. My next post will be about the progress Moe has made since starting at the school - and there has been progress!

If you do think your child might be autistic, go to your pediatrician. There is also a helpful post called "Five Things You Can Do If You Think Your Child Has Autism" over at Both Hands and a Flashlight. Click here to see the post.

Welcome


If you are a new reader to this blog (and I know you are), welcome. You are here, so I know you are a smart and savvy reader. Clearly you are good looking and have a fantastic sense of humor. I'm excited that we're in this together.

It has been a long road getting here, and since my orignal "welcome" post was so long ago, I thought I should write another one. So let's get to the point. I am a SAHM (stay at home mom, for those of you not in on mommy acronyms). I have two kids, Moe and Jelly Belly. Moe is, as I know you will agree, an adorable two year old. Jelly Belly is 3 months old. She's awfully cute too.

Moe is currently in the process of being diagnosed with possible ASD, or Autism Spectrum Disorder. This blog is one way I plan to have a record of our experiences and Moe's progress. I also hope that friends and family will use this as a place to find out what is happening with him on a more frequent basis than I can possibly communicate to everyone individually. And maybe I might even find a reader or two who is going through the same thing and who wants to share the journey with us.

August 15, 2009

On the edge

I'm pretty good with stress. Stress and I, we go way back. So when big things come along, I'm ready to take them on. What's our action plan? I'll make a spreadsheet! Do I need to order snacks? But I find that during times of stress, it is the little things that drive me over the edge.

My mom came up for the week to help with the kids, and probably to check up on me and make sure I'm not actually losing it. She arrived on Monday and I was hosting my book club that night. My plan was to pick her up from the airport and drive straight to pick up some cupcakes I ordered. Well, I took the wrong exit, and had to drive all around town to get back to the bakery. It wasn't that I was lost. I knew exactly where I was since I was headed toward Yogurtland. Anyway, at this point, I'm sure my mom did think I had lost it. But she kept this to herself. She was being kind. I think she feels sorry for me.

Later in the week, we got home from some errand and the dog had chewed my shoe. Not a Jimmy Choo or anything, but a very nice kiwi green leather flip flop that I quite liked. So I call Jeff, who says "why did you leave the dog in the bedroom?" (I should back up for a moment. Our dog chews things, so we have a long process of leaving the house which involves closing all of the doors. But because of a long story which I won't go into, I decided I would be nice and let her be in the bedroom while we went out.) Anway, back to my helpful husband. Thanks, Jeff!

Then the phones went out and I had to have the phone company come out "anytime between 8am and 6pm." And the kitchen sink is leaking. And we have a wasp nest on the front of the house. And why is it that all of these things are happening right now? Don't the gods of all the annoying shit that happens know that I'm dealing with something big and I don't have time for this? I know, I know, maybe life is trying to teach me a lesson about what is truly important, blah blah blah. And I get it. Sort of.

So what does any former project manager do when things get stressful? 1. Freak out and cry a lot about how everything is going to hell. Then, 2. Organize! I now have wonderfully organized dressers, closets and my entire office! Jeff is even in on it, installing drawers in our kitchen cabinets and shelves in the laundry room. I always could get those engineers to do what I want.

August 8, 2009

Dear Diary

Nobody reads this blog but me. I'm reluctant to promote it, even to close friends and family, until it has had a chance to take shape. I need to find my voice. Plus, I want to make it pretty, add the right links, tag everything correctly, and do all the things that make a good blog.

I'm not sure what it would be like to actually have any followers. I might be more likely to update on a regular basis. It would be nice for people to see what is going on with me, and especially with Moe, without having to tell the story over and over. I might be able to get more involved in the community of bloggers out there, especially women and "mommy bloggers." I know I haven't even scratched the surface of who is out there.

When I was in high school, I kept a diary. I haven't looked at those pages in years, though I'm sure they are still at my parent's house. I'm sure I would find some of the passages hilarious now: the overdramatic feelings of a teenager. But at the time, of course, they were real, and I could be truly honest about them because no one was looking. This is, of course, the challenge with a blog. Even though I will be writing this in my own space, like a diary, it is out there for anyone to see. Will I feel like I have to temper my feelings because they are in the public eye (even if that "public" is just a few close friends and family)? Will I be afraid of the words coming out wrong and offending someone? Will I lose the sanctuary that this blog is becoming for me?

August 6, 2009

Thanks for the juice box

Today was a good day. Last night was not a good night, as I spent hours reading autism blogs and reading about epilepsy and absence seizures. Okay, here's where we discover my true neurosis: I caught Moe staring into space for a few seconds and immediately went off the deep end. He hasn't even been diagnosed with ASD yet.

But today was a good day. After a morning visit to a dear friend and personal savior (who also happens to be a therapist), we went to water the plants at another friend's house. Of course, just as we arrived, I realized that it was almost 12:30 and Moe hadn't had lunch yet. Cue meltdown.

Desperate, but not wanting to snoop too much, I opened the fridge and found 3 juice boxes. Since she has 2 kids, I figured I could appropriate one for Moe. After drinking some of the juice I asked Moe if he wanted more and he said "juice!" And earlier today, he said "baby" when he saw a picture of Jelly Belly. But juice! Juice is a new word that he has never said before.

Now, I could go down the destructive path that reminds me that I should have been celebrating this achievement a year ago. I could dwell on the fact that Moe's morning playdate, who is 6 weeks younger than Moe, has the vocabulary of a third grader. I can re-read for the hundredth time the passage from the doctor's report, even though I have already memorized it, that contains the words "red flags" and "autism spectrum."

But today was a good day. I will dance the juice box dance to the sound of the ABC's coming from the fridge phonics toy and I know that Moe will join me.

August 5, 2009

A Diagnosis

IMG_0001 Yesterday, we took Moe to see a developmental pediatrician. We didn't feel like the Early Start evaluators gave us a good sense of what was going on with him, and our pediatrician, Dr. G., recommended someone in her group.

Dr. S told us what I've known for quite some time in my heart. W is on the autism spectrum. Okay, she said she wants to spend some more time with just him, but she sees a number of "red flags." The writing is on the wall.

How do I feel about this? Honestly, I don't know. Scared for W and what his future holds. Scared for me and how much more my life will need to be dedicated to his care. Guilty for feeling that way. Anxious to find him the right therapies (the doc doesn't think the learning center he is in right now is the right place for him).

DH, Jeff, seems to be in a bit of a denial. He thinks Moe will catch up and be fine, and maybe he will. I want to be optimistic. Moe is only just 2, and early intervention is key. Jeff didn't talk until he was 3, and he and is clearly an intelligent, well-adjusted person who can dress himself and use a spoon. But I also want to be realistic.

So now we start working with our service coordinator at the regional center to try to get W's treatment plan updated. I'm still lost and confused in the world of IFSPs, and IEPs, and the whole thing. There are a lot of resources out there, but it is going to take some time and effort to find the right ones. Did I mention we have a newborn?

On the plus side, I now know what this blog is going to be about. It isn't a unique concept. I did one search for "autistic toddlers and nail clipping" and found a similar blog, Both Hands and a Flashlight. I'm sure there are a thousand others. But this will be our story, as beautiful and unique as Moe himself.

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