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


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.


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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