Searching for Answers

When Moe was first diagnosed, our developmental pediatrician, Dr S, ordered some blood tests to look for genetic abnormalities. Moe had had a rough appointment already, and was ready to go, so we didn't want to do the tests that day. We asked Dr S if the tests did find anything, would our approach to intervention be any different. She said no, so we decided to wait. Eventually the order expired and we never had the tests done.

Last year, as part of one of the research studies at Stanford, Moe had to get a blood test. It ended up not being that big of a deal, so I thought about calling Dr S to re-order the tests. Finally, last week, I sent her an email. I also asked her if she thought an MRI could be helpful. She said the MRI isn't indicated, but ordered the genetic tests.

I'm not sure why I want these tests done now, over two years later, but I've been feeling quite frustrated with Moe's very slow, and not necessarily steady, progress. Every autism book I read, even the ones without the miraculous "my child no longer has autism" endings, show children who make pretty significant progress. Even though I can see small changes in him, Moe's deficits in the major areas of speech, attention, and impulsiveness, seem not very different (or perhaps even more severe simply because Moe is bigger) than when we first started.

So this weekend, we took Moe to the lab and had the blood tests done. Moe hated it and cried quite pathetically the whole time. Jeff took him in while Jelly and I stayed in the waiting room. We could hear him and Jelly kept saying "Moe's crying. Let's go help him." I knew he wasn't in pain. He just hates being restrained in any way. Moe barely flinches at shots, but can't stand when I try to cut his fingernails. When Jeff and Moe were finished, Jeff confirmed my suspicion. Moe was quite upset before the needle even made an appearance.

And now we wait for the results. I'm more anxious than I thought I'd be, though I suspect we won't find anything unusual. If we do, we'll have the answers as to "why" and we may have a better understanding of his likely progress. And even if the results don't change how we approach Moe's interventions now, new research is coming out all the time. Many parents have long suspected that there are a number of autism sub-types, and being able to classify each child's particular type of autism may help direct - and develop - the most helpful therapies in the future.

Up Sleep Creek Without A Paddle

Some pretty serious sleep issues have returned to our house. It's been going on for two, maybe three, weeks now. I can't remember, probably because I'm so f-ing tired.

I guess it started when we changed the clocks. I didn't think it would be that big an issue, since we give Moe melatonin to fall asleep. But for some reason, both kids started waking up really early. Then Jelly started teething and Moe got a cold and it went downhill from there.

The last week or so, Moe has been waking up several times in the night crying. Sometimes we would find him tangled amid the blankets and he just needed to be tucked back in. We'd do a quick fix and he'd be quiet for a while. Lather, rinse, repeat repeat repeat.

Other times he was comfortably under the covers, head on pillow, going from crying to screaming and back again. We've tried soothing, not soothing, offering water or milk, taking him to our bed or the couch, turning on lights, keeping them off. We're dumbfounded. And did I mention exhausted?

But I've been sending Moe to school anyway, because he doesn't seem sick anymore, and if he missed a day everytime he didn't sleep, he'd never go. And he's had a decent week; on Wednesday his teachers said he even used some words to request things. (He said "frog!" for the 5 Green and Speckled Frogs song!) On Thursday, he was in a good mood in the morning, but when I went to pick him up, in the pouring rain, they had to carry him out to me. He was screaming, covered in tears. They said he had been like that for about half the day.

So I finally installed the video monitor I've had sitting on my desk for a couple months. And by "install," I really mean "plug in." Not sure why I didn't do this sooner. And we watched. Moe fell asleep as usual, and though he stirred a little around 10:00, he didn't wake. I set the monitor on my nightstand. I liked having that visual of Moe as I fell asleep, though I'm so glad I didn't have one when he was a baby. As Jeff pointed out I would have been asking him every 5 minutes if he thought he could see the baby breathing.

Around 12:30, Moe woke up. He didn't cry, but his eyes were open. It looked like he was starting right at me, though I think he may actually have been looking at, and possibly calmed by, the little power light on the camera. Moe was quiet, barely moving except to shift from one side to the other. But he was awake until around 5:00 am. I decided to let him take the day off from school so he could sleep in. He didn't get up until after 9:30.

So now I'm freaking out even more. All those nights when he was quiet and I thought he was sleeping through the night? Maybe he wasn't. The problem might be much worse than I thought.

And it gets worse. I tried to make an appointment with our developmental pediatrician, Dr. S, and found out she is not taking any new appointments for SEVERAL MONTHS. Our regular pediatrician told us Dr. S is going on maternity leave. The last time we saw her she was just back from having a baby. Wasn't that one good enough for her? Jeez.

She's supposed to be around for 2-3 more weeks so we're hoping we can get an appointment with some secret code word or something. That actually happened with her once before.

So here we are, exhausted, grumpy and without a plan. Autism parents, I need you. All suggestions welcome.
Special thanks to @jentroester who has been so supportive on Twitter already.

Resolving sleep issues

Sometimes I play the "at least he's not" game. Kids with autism can have so many disparate issues, ranging from the ones people tend to be aware of, like speech delays and sensitivities to light or sound, to less apparent ones like digestive issues. When Moe was first diagnosed, his issues were social and communicative, but we would look across the spectrum and think "at least he's a good eater" or "at least he likes to be touched."

I've discovered that this is a dangerous game to play. For one thing, all kids, including spectrum kids, change so fast. As soon as I thought "at least he's not a hand flapper," he started flapping his hands. At first this really freaked me out, not because of the flapping itself but because I thought it was a sign that things were getting worse. But then the flapping would go away for a while and something new comes in. Sometimes he needs to chew a lot, sometimes he gets really manic and has a hard time settling down. These things come and go and although we employ strategies to manage them at the time, I'm learning not to read anything into any new behavior because it is likely to disappear as quickly as it came. Sometimes they return and sometimes they don't.

But lately we've been having an issue we've had trouble managing behaviorally. Moe has, from the time we did sleep training at four months old, been a good sleeper. He'd fall asleep quickly and stay asleep for a good 12 hours, with only the occasional exceptions for teething or illness. I'd always say "at least we don't have sleep problems." You can guess what happened next. A few months ago, Moe started waking up in the middle of the night. He wasn't upset, but we'd hear him in his crib, laughing. Not a normal laugh, but an out of control hysterical laugh. It was cute, but was interrupting all of our sleep. Sure enough, however, that resolved itself after a week or so. Unfortunately, now Moe is having trouble falling asleep and it hasn't resolved on its own. It's been a month or more.

We do everything you're supposed to do, have a consistent bedtime routine that lasts 20-30 minutes, keeping the lights low and distractions minimal. We tried using deep pressure, brushing techniques and swinging. Moe would calm down for a while, but ten or fifteen minutes later, we'd hear him in his crib kicking, playing, screaming and sometimes crying. He was staying awake until 9:30 at night and then we'd have to wake him in the morning, still exhausted, so he'd be ready and fed before his 8 session. Everyone was miserable.

Last week, we happened to have an appointment with our developmental pediatrician, Dr. S, and we mentioned this concern. She suggested melatonin. I'd read about people using melatonin with autistic kids, but I wasn't sure if it was a legitimate thing to do or another snake oil remedy. Apparently, many kids with ASD do have problems producing the melatonin required to fall asleep at the correct time. So we decided to try it.

And thank goodness we did! It is working like a charm. Trader Joe's sells a small, chewable, 500 mcg (0.5 mg) dose. Moe eats it, then we start the bedtime routine. One half hour later, his eyes get heavy and he falls right asleep. We've been experimenting with a half dose (really a quarter dose, since Dr. S said we could give him 1 mg if we needed to), with mixed success. Our goal is to wean him off it and hopefully his brain will get back on track.

But for now, it's wonderful, and it is making a difference in his days. This week, he's been more engaged, verbal and alert. He's having fewer manic times where he can't calm down and I've even noticed he doesn't need to chew (on his chewie) as much. Of course, yesterday, right when I said "at least we've got this figured out," he woke up at 2:30am. That's life, I guess.

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.

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.

A Diagnosis

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.