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.

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.

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!

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.

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.

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.

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.

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.