How an Evaluation Shouldn't Go

I found a scrap of paper when I was organizing a shelf the other day. It was dated May 2009, and a closer look quickly told me exactly what I was looking at.

The paper was from a Birth to Three provider following an evaluation for Ethan. The form had an "X" marked in the box that read "Not Eligible to Receive Birth to Three Services." Not Eligible, four months before he received his first diagnosis of moderate to bordering on severe autism.

How does this happen?

There are a series of channels you go through, if you have concerns about your child's development. Normally you would talk to your pediatrician, who may or may not recommend an evaluation by the state's early intervention program, which may lead to a diagnosis, further referrals, and recommendations for therapies if needed.

But what do you do if the system doesn't work the way it should? The answer, in short, is to work around (over, under, through, whatever you need to do) it to get your child the help he or she needs.

In Ethan's case, our first roadblock began with the pediatrician, who was nearing retirement and not what one would call "proactive." He seemed rather to belong to the traditional school of thought that most mothers overreact and most problems can be resolved by "waiting them out."

When I expressed concerns over Ethan and his social development at 15 months and again at 18 months, I was brushed off. He did hand out the MCHAT (an autism red flag checklist) for me to fill out at the second appointment, but due to some (in my opinion) vaguely worded questions, Ethan was marked for only two red flags. Three is what warrants a referral for additional follow-up. And so we were sent on our way to "see how things go" from that time until his two-year appointment.

Except something didn't feel right. This is a common theme in both Ethan's story and so many stories. I don't think this can be emphasized enough -- the cliché is true. Trust your instincts. The worst you can do is err on the side of caution and in time realize your concerns were unfounded, and what's so bad about that, really?

And so a week or so after Ethan's appointment, I made a call on my own to the state's early intervention program, Birth to Three. I'm not sure if this applies to every state, but in ours, parents should know that if your child is under three, you have the right and ability at any time, doctor's referral or not, to call up Birth to Three, express your concerns, and schedule a time for professionals to visit your home and make an assessment.

But what happens when the "professionals" aren't so professional? This brings us to Ethan's Birth to Three evaluation, four years ago now. Wow. We have come a long way.

I remember the cloudy morning so well. Two women showed up at our door. One set up camp on the couch with a laptop and reams of paperwork. She began typing away. The other set out to try to engage Ethan. She had a goodie bag of toys meant to entice him while she gauged his development.

Ethan wasn't having any of this. He didn't want a thing to do with this stranger in our house. He would give her nothing but fleeting glances; would barely respond to any of her requests. I think she made it few just a few items on her checklist. After attempting to coerce him for awhile, the assessor essentially gave up. And this is where I think a crucial mistake was made.

After she had little luck getting Ethan to "perform," the woman started running down her list and asking me to confirm if Ethan could do the various activities. I attempted to answer as accurately as I could, and the result, after everything was tabulated, was not too different from Ethan's visit to the pediatrician. According to their calculations, he had two autism "red flags." Two flags meant he wasn't eligible for additional follow-up from Birth to Three, while three flags would have made him eligible.

I am all for parents being a critical component to the evaluation process. But the fact that Ethan refused to do almost everything asked of him, the fact that his evaluators openly admitted they did not witness him completing most of the tasks on their assessment forms, and were only going by information I provided -- that should have been a third red flag, right there.

Ethan's Birth to Three assessment concluded with a bizarre set of recommendations that in the end served as my own red flag that the whole thing had been close to a farce. I was told that he wasn't eligible for services, and that we should work to engage him more and probably get rid of all his toys with buttons and lights so he wouldn't obsess over them. They scribbled a few names of developmental pediatricians to call, if we still had concerns when he reached 24 months, and they were on their way.

Huh?

And so, even as I drove to Target a few hours later, on a quest to find Ethan developmentally appropriate toys minus the electronics, I was again thinking something's not right. A few weeks later, I called a developmental pediatrician and basically begged to get Ethan in. Three months later, he was diagnosed.

The lessons here again stand to be repeated. If you think something is wrong, keep pursuing. The experts sadly are not always experts. You don't necessarily have to go through the proper channels to get help for your child. Sometimes you just have to keep persisting.

There's something else to remember. Even in the best of circumstances, getting your child set up with the proper services takes time. Even after Ethan's diagnosis, it took a good two months to really get his therapies going. I am not one of those people to rail over there being a "critical window" early on for children with autism to get therapy that will transform their lives and possibly cure them. I am not saying if you didn't get your child in for services early, you permanently damaged your child's potential.

But I will say this: I began having concerns about Ethan in March. Even with the constant pushing past the naysayers, he did not begin receiving services until late October.

That's a long time. Way too long. And so many kids go so much longer, because their parents have been brushed off, because someone told them to "wait it out," because someone gave them advice that just didn't sit right but they weren't sure if they should speak up.

Do speak up. Do keep pushing. When it comes to your child's developmental issues and finding help, being impatient is for once a very, very good thing.

The Cost of "Almost-Normal"

I was poking around online one day, thinking about this whole Asperger's vs. High-functioning autism thing (Ethan's teacher's: "We see him as rather 'Asperger-ish'"/Ethan's developmental pediatrician: "He has classic autism but is very high-functioning"). People have asked me recently, and I've wondered too: Just what is the difference between Asperger's and High-functioning Autism (HFA)?

People talk about the lack of early language delay in people with Asperger's, or that people with HFA must show impairment in these three categories: social interaction, communication, and restricted repetitive and stereotyped patterns of behavior, interests, and activities.

But this quote by Tony Attwood, a clinical psychologist in Australia and one of the world's leading experts in Asperger's, stopped me in my tracks.

"The difference between High-functioning Autism and Asperger's," he said, "is happiness."

What he meant by that, in a nutshell, is that people with Asperger's have more of an inner drive to make social connections, and are more aware of the way they have trouble making those connections and the ways they are different from others -- and this hurts.

The difference is happiness. It pained me to read the words. It pained me, because I thought of those I know who have people close to them with Asperger's, or those who feel they may have Asperger's themselves, and I know the way they struggle.

I thought of the way people present autism as a spectrum, that it runs from low-functioning to high-functioning to PDD-NOS to Asperger's (or something like that) and that when it's all on paper, any parent new to this whole thing would say, or would think, if there's no cure, Asperger's is the goal. It's the closest to normal!

The question came to me just like that, almost a slap in the face:

Do I want my child to be "normal," or to be happy?

This is, I believe, the great tug on the hearts of all parents who have children on the higher end of the autism spectrum: the greater their child's awareness and level of cognition, the more recognition that they are not like everyone else.

We want, how could we not, them to rise to their highest level of functioning possible, to be able to get along in this world, to have meaningful relationships. We see it as a milestone when our kids long to relate to others rather than to stay in their own world alone, yet for people with autism, that very longing can be what brings the most heartache.

And so, in all of this, how to celebrate Ethan's successes? All I know is, as tempting as it may seem, they can't be viewed only through the prism of inching closer to being a typical kid. They can't, because he's not typical. And some of these baby steps towards being a "regular" person are, as much as it hurts to admit, tiptoes towards different kinds of challenges.

To me, it's almost like the innocence of a child vs. the cynicism of a grown-up. Do I want my child to be blissfully unaware? Those with greater impairments from autism do not see the way others see them. Their lack of knowledge cushions them from so many things.

Yet how can you not route for your child to make gains and strides in thinking and functioning, in independence and awareness?

These are hard questions. There are no easy answers.

Seasons (or One of My Favorite Conversations, Ever)

Part One

We're riding in the car to one of Ethan's playgroups.

"Mom, do you know why I watered the pavement the other day?" Ethan pipes up, referring to his quest to cover every inch of pavement around our house with water from a too big watering can that kept sloshing over his knees.

"Why?" I asked, curious about this offering of information.

"Because I was trying to make it summer."

"You were?"

"Yeah."

"Aw, Ethe. I'm sorry. You can't MAKE summer come."

"Well why not? I can make winter turn to spring."

"How did you do that?"

"When I kicked the snow with my feet so hard I could see the ground under it. That was making winter go away," he announces proudly.

"Well, actually --"

"And I can make summer turn to fall. Do you know how?" he keeps going. "I can climb up into a tree in summer, and make the leaves fall to the ground. That makes it fall."

I try not to laugh. "Sorry Ethan, but you can't make the seasons come. You have to wait for them."

I feel like there's some sort of profound message tucked in there, but before I can ponder it we've reached our destination.

Part Two

After school, now in the car with Anna, we pick up the conversation again.

"Well, I WANT to make it summer. I want to go to the camp!" Ethan says stoutly. "I know...I can get the sun and bring it closer and that will make it hot." I'm impressed with the way he's putting two and two together, in his own way.

"How are you going to do THAT?" Anna asks knowingly.

"I'll use a tool," Ethan says, probably thinking of Mikey Mouse Playhouse. "What tool could I use?"

"Little problem, bud," I contribute. "The sun is 93 million miles away. How are you going to get there?"

"I will bring a picture of my mom, my helmet, and space candy," Ethan starts quoting from his "I'm Going to Be the Best Astronaut Ever" book.

"You mean you're going to go in a spaceship?" I ask, prodding him to fill in the blank.

"Yeah!"

"Maybe you could use a shrink ray when you get there," Anna says.

"That means you make the sun really small so you can grab it and take it back with you," I explain.

"No Anna! We don't want the sun to be small. Then it won't be hot!" Ethan exclaims. Again, I'm impressed with his reasoning skills.

"Well, then we'll bring it here and use the shrink ray to make it big again, and then it will be really hot and will be summer," Anna concludes.

"Then we can go to the beach!" Ethan adds giddily.

Part Three

A half-hour later, while he's sucking on an ice cube in the kitchen: "Ohhh! I know how I can make it turn from fall into winter!"

"How?"

"You take ice cubes, fly them up to the clouds in an airplane, and that will make the snow come down."

"Ohhhh," I say encouragingly.

"That's how you do it, mamma," Ethan says in the voice of an instructor. "I figured it out."

Birth Club

Back eons ago when I found out I was pregnant with Anna, I went online and discovered a website called BabyCenter, where you could type in your due date and find a group of moms from all over who were due to have their babies at the same time. This was before the days of Facebook, when online communities were not yet commonplace, and I thought it was the coolest thing.

I visited my "Birth Club" all the time. We'd swap stories and commiserate about various pregnancy ailments. Then everyone had their babies and the pictures went up along with the birth stories. After that everyone stuck around, especially for the first year, to chat about how their kids were developing. This was a great way to expound on these weekly emails BabyCenter loved to send out (i.e. "How Your 12-Week-Old is Developing") with little tidbits about what would be coming next.

Three years later when Ethan was on his way I again joined a BabyCenter Birth Club. While Anna's group by that time had died down to a few measly posts every week, the impending baby group was of course buzzing with excitement. And so again I chatted and swapped stories and looked at people's pictures when everyone's babies were born.

Yes, everyone's babies were born. And those BabyCenter informational emails started coming.

I first noticed around the two-month email. "Your baby should be tracking things with his eyes," the blurb said, or something similar. Only Ethan wasn't do that so well. And he'd barely given us that elusive first smile.

The emails kept coming, along with the posts on the birth board. The babies were holding their heads up. Ethan seemed to be taking longer to do that. The kiddos were all rolling over. Anna rolled over the first time at 10 weeks, and here we were at three months, and Ethan hadn't yet.

I reasoned with myself. Ethan was born almost three weeks early. His due date had been in the following month. What if I went to that month's Birth Club and checked out what those babies were doing? My concerns were assuaged a little bit, for a little while. The email facts seemed a little more appropriate. The babies a month younger seemed to be doing what he was doing...

...until we reached about 7, 8, 9 months, when many babies' social side really starts to come out. There was talk about cooing and babbling, of playing peek-a-boo. Never mind that elusive pincher grasp that Ethan hadn't gotten down yet.

I started to hate the Birth Club. At first there was pride tinged with anxiety. Anna had been such a little early bloomer. Her first word was at six months. By age 1 she had more than 10. Full sentences before 2. I hadn't realized how secretly snide I'd become about her little "accomplishments." Such a smart baby! I would marvel. Until my son didn't seem so "smart," and all of those clichés about every child developing differently actually started to mean something.

By the time Ethan was approaching 15 months old, I hated the Birth Club because it made me really, really scared. No matter which of the two months I clicked, really, or even babies born two months later, Ethan was behind. Yet his pediatrician never said a word. Everything everywhere, even those darned BabyCenter emails, said each child developed at his own pace. Apparently, I just had to wait.

But I knew I couldn't wait anymore while still reading what all of the other babies his age were doing. I couldn't take my growing sense of panic. And so, I refused to go back. I left those typical babies behind. I deleted every email that came in from BabyCenter without reading. I didn't want to know anymore. Everything I read ended up getting my heart pounding.

I left the Birth Club to join a club of a different kind. I left BabyCenter far behind for the days of questions and observations, of evaluations and appointments and a diagnosis; then of therapists, and preschool.

The other day online I clicked on an article and realized it was linked to the BabyCenter website. I stared at the familiar logo from so long ago and wondered, Should I?

I poked around a little. It didn't take me long. I found Ethan's Birth Club, took a breath, and clicked.

Of course, now the kids are five. Most moms aren't on there chatting anymore. Our kids are old news. Someone was talking about losing teeth. Someone else asking about vaccinations. And that little information blurb about where my child should be, at age 5 and 5 1/2 months? They were talking about humor, and how five-year-olds don't quite "get it." And about speech -- common mispronunciations, stuttering.

I read it all over, and thought, a lot of this sounds like Ethan. Some of it doesn't. And in that moment, it felt okay.

Best of all, I didn't feel afraid anymore.

Dinsoaur Bones

I'm outside in the garden, and Anna and Ethan are over on the swing set.

"Ethan, let's play digging for dinosaur bones," I hear Anna say.

"I don't want to do that," he replies.

"But why?" No answer.

"But why, Ethan?" Still no answer.

I sigh. "Ethan, your sister is asking you something," I say.

"Why, Ethan?"

"There are no dinosaur bones in this backyard!" he replies.

"How do you know that?" Anna asks.

"There aren't!" he yells.

"Boo, hoo, hoo," Anna rubs her eyes and does a rather convincing fake cry. "Ethan won't play my game."

Variations of this conversation have played out between them about 642 times. Here we go again, I think. It's the playground all over again.

Again, I stand still, wondering so many things.

I wonder how upset Anna truly is...if the fake tears are truly just a ploy or if she's bothered by Ethan's lack of enthusiasm. I wonder if it's right to manipulate Ethan into playing a game. I wonder how much of this is just a sibling spat vs. Ethan not wanting to be flexible vs. him not knowing how to play the game and responding by acting contrary.

Anna runs inside for a moment and I go over to him, deciding to have a little chat in case he's feeling anxiety over not knowing what "digging for dinosaur bones" really entails.

"Ethan, do you know how to play 'dinosaur bones?'" I ask.

"How?" As usual, as I suspected, he's about three steps behind in most of these typical kid pretend play games.

I think of a simple way to describe this; the basics. "You dig in the dirt with a shovel, and you see anything that might look like a bone, because if you found dinosaur bones you could send them to a museum and get a million dollars!"

"Why?"

"Because they're very rare," I answer, wondering if he knows what that means.

"Mamma, there are no dinosaur bones in this yard!" Ethan is completely bewildered as to why this would be a fun game. Duh mom, get with it, his tone tells me. I have to smile at his completely literal view of the world.

"But it's fun to pretend there are," I say more to myself, feeling deflated. For Ethan, perhaps not. He was having a perfectly good time trying to unearth a giant root from the dirt under the swings.

Anna, never one to be deterred easily, comes outside with a "kit" she's put together, including a paintbrush to brush the dirt off any "bones" and string to link them together. I find Ethan a trowel.

"Okay, let's start digging!" Anna announces, as I walk back over to the garden. I wonder if I will make it back to the garden before Ethan quits this game. I wonder if Anna wonders why Ethan's little friends play with her so readily and eagerly while her brother often will not.

I wonder about sibling support groups out there for Anna and if they really apply. Never mind the fact that she's already staunchly announced she has no interest in attending one. It's one thing for a child to be able to express, "My big brother doesn't know how to talk and can't talk to me," or "my sister tantrums for three hours if she doesn't get to eat pretzels." It's another to say, "My brother won't play my games."

Almost any kid could say that. These things are so darned subtle.

I wonder again how fair it is to make Ethan play games he doesn't want to play, when he was perfectly happy pulling at a tree root, focused on his thing, humming his own little songs.

And as I'm wondering, I see and hear that Anna has asked Ethan to look for bones, and Ethan is digging. Anna is digging. Ethan finds something and shows it to her. She comes over to me with something that may or may not be fossil-like. I "ooh" and "ahh." Anna inspects Ethan's dirt and finds a few other possibilities. Ethan is digging and content. Sister is too. This lasts for 10 minutes, also known as a very long time in Ethan/Anna playtime that doesn't involve wrestling.

Then it's time to go in, anyway. The sun is setting. Everyone's cheerfully dirty. And all of these questions can rest until they inevitably rise to the surface on another day.

Excitement Level

"...When communicating Ethan shows a limited range of expressions and gestures..."

-- From one of Ethan's evaluations by his developmental pediatrician

 

Don't ask me why people on the autism spectrum have difficulty communicating excitement in what we neurotypicals like to call "an appropriate way."

 

Don't ask me why a child jumping up and down when excited is socially acceptable, but a child who shows his excitement by spinning in circles or flapping his hands is not.

 

Don't ask me why it is that people with autism aren't ones to have wide-eyes and wide-open mouths, to gasp in awe or have a grin that takes over their face, why they are more muted in their expressions in some ways yet at other times (usually at different times than everyone else) they are more animated, in their albeit different way of being animated.

 

I just don't know. But I know this:

 

Yesterday morning Ethan woke up and bounded over to our bedroom.

 

"I am SO excited!" he announced.

 

"I know why. Because the new Angry Birds Star Wars video is coming out today on my phone?" I asked knowingly.

 

"Yes!" he exclaimed. "And because today is the day of the Super Why show. I am double-excited! I can't WAIT!"

 

I thought about everything that had to go into our brief exchange. Ethan had to wake up and know that the feeling he was feeling, those good butterflies in the stomach, was called excited. He had to figure out what it was that was happening in his little world that was causing him to have that feeling. He had to express that -- AND, he had to gauge in his mind his level of excitement...had to understand that excitement comes with varying degrees.

 

All of that, in just a moment's exchange.

 

He did it.

 

That's pretty darned exciting. 

Trouble on the Playground

Every day after school (and I mean every.single.day) Ethan and his friend B. get out of school, run past the kids walking to their buses and race to the playground in back of the school --

and I step into my role as mediator, negotiator, and ambassador of pretend play.

The boys are five now. Kindergarten is calling. The pretend themes are getting more complex out there, and Ethan spends a lot of his time back in the world of Parallel Play. He uses up his social and imaginative energy in school. By the time he races out the doors, he's spent. Fun playground time for him right now is challenging himself: how many times can he climb up the slide? How many seconds can he hang from the high bar? Can he make it across the really hard monkey bars? He doesn't mind his friend's company after spending the afternoon together in preschool. He just doesn't want to spend another hour outside playing exclusively with him.

His friend B. is about as accommodating as any five-year-old can be. He patiently waits and plays Ethan's games (we've turned Ethan's self-imposed challenges as a kind of "Playground Olympics"). He chases Ethan around when he's not listening, attempting to get in his face and make him understand, make him really hear him. He's not one to give up easily when Ethan gives him no encouraging visual cues (such as actually looking at him while he's talking) or doesn't respond to his overtures. He keeps prattling on, doing his best to persuade, to cajole, to convince.

But even the most patient child has his limits, and just as Ethan is burnt out from too much playing, B.'s patience is wearing thin.

And as much as I talk about acceptance and as much as I love my boy and don't want to force him to do what doesn't come naturally, a part of this still breaks my heart.

I met with some of his teachers to talk about this, to ask their thoughts on how much to push and how much to accept...how much to expect Ethan to get along with others and how much to expect others to accommodate him. He's doing great, they reassured me. You have to know how well he's doing and what a good kid he is. But (isn't there always a but?) he has his challenges. There are things that don't come easily. He may just want to play alone and be perfectly happy. He can't feel too much pressure out on the playground that you're trying to force him to be a friend.

Of course I know all of these things. I know all these things, and yet on the playground yesterday, I felt my impatience bubbling over.

B. had played Ethan's game already. He just wanted to play ice cream shop for a few minutes. Ethan had promised he would play B.'s game. Even that came only thanks to urging from me (Just five minutes! You can't get extra TV time if you don't cooperate and play your friends' games). Yet when the time came, Ethan ran away and started doing something else, the way he almost always does.

"C'mon Ethan! You be the cashier and I will order ice cream!" B. called.

Ethan stayed over next to the metal music keys, pounding out notes.

"Ethan!! It's time to play my game!"

"I don't want to play that game."

"But you PROMISED!!" B.'s tears were almost starting. "If you don't play, I'm not playing with you anymore. You never want to play any of my games."

B.'s mom, trying to salvage the situation and alleviate pressure off of Ethan, went over and ordered some ice cream. Ethan headed over to the swings. He was completely un-phased by his friend's reaction. I saw him gazing over at the monkey bars. I could see his mind was still on 15 minutes before, on the activity he hadn't wanted to stop doing to be "inconvenienced" by play with a friend. "I met my challenge," he was saying to himself quietly. "I can do the hardest monkey bars now. I am a big kid."

B. was still hollering at Ethan. "Run around and tell everyone about our restaurant, Ethan! We have to get people to come and visit!"

Ethan didn't hear or didn't care. I sat there straddling the line between letting him bask in his monkey bar accomplishment and trying again to teach him about being a good friend. How can I, I wondered, when he just doesn't care yet?

How can I show people out there that my son isn't just being a selfish brat? How can I expect a five-year-old like B. to understand, when Ethan's teachers say they sometimes have trouble getting other non-special ed teachers to understand that these kids really are wired differently?

How could I let go of my expectations and simultaneously let go of caring about others' (sometimes unrealistic) expectations?

How could I stop caring so much that my son, at the moment, doesn't care about playing games that seem so simple to the average kid...games that instead of being fun and exciting to him equal stress and misunderstanding?

The more I thought about it, the more I realized that some of the biggest trouble on the playground had to do with me.

We'll be back out there again today. The answers aren't much clearer, but I know this: I have to learn to step away from the role of negotiator, of play teacher-in-chief, and sometimes let the chips fall.

I think I avoid this sometimes, because I know the results will be painful -- for me.

I know Ethan may drift away from friendships if he can't sustain his side.

I know, right now, at least, that won't bother him too much.

And that hurts.