The Family Room

I have a confession to make

Back when we were first trying to understand what was happening with Isaac; that is to say, when I was in what you might reasonably call denial, I read The Einstein Syndrome. The idea was that some percentage of late-talking children--who have behaviors that mimic those of autism--don't actually have autism. The book goes into some detail about Einstein's brain--about how the part of the brain that governs analytical ability was so overdeveloped that it crowded out the part of the brain that governs speech. And so Einstein didn't speak until he was four.

It was, very possibly, a decent theory.
It was, just as likely, pseudoscience.
It was, very definitely, an exercise in hairsplitting.

I joined a "late-talkers" board and stayed up into the wee hours chatting online with like-minded parents. Our kids didn't have autism. They were just late talkers. Analytical. Smart. Good with numbers. Never mind that they flapped, they toe-walked, they stimmed, they ignored their peers. This was just a by-product of their GIANT BRAINS and their difficulty communicating. Oh, and some sensory issues.

I met one of these women when she came into town. She brought her son, who, I realize now, was almost certainly on the spectrum. She was very sweet, and drank tea in my dining room as her son watched videos in the front. She played with Isaac. She said he reminded her of her son at his age. When she left, I went to bed and wrapped the blankets tight around me.

Not long after, I bought Susan Senator's book. It was time.

I started this blog in February 2007. The day after I started it, I left a note on the late talkers' board in case anyone wanted to read or comment. The next time I tried to log onto the board, I couldn't. My login was invalid.

I sent a note to the moderator--that same woman who had visited my house a few months before. I asked her if she wouldn't mind resetting my login, as it hadn't worked that morning. She told me she'd revoked it because my blog was full of resources related to autism. Why, she asked, would I want to be part of a late talkers board if my child had autism?

Why indeed.

I was so afraid of that word then, of everything it represented. Starting this blog has been a process of making peace in my own way; not simply with my son's differences, but of what they meant. Or what I thought they meant.

Today, J. took Isaac for pizza. The server, J. said, looked like Ronaldinho. Isaac watched him with interest as he prepared the pizza, served it, and then walked into the back of the store. "She's going into the back!" Isaac told J excitedly. "Isaac, he's a boy. He just has a ponytail," J. responded in an embarrassed whisper. "I want to go into the back," Isaac demanded, and then, after a moment, "We can't go into the back. We don't work here."

J allowed that that was true. Isaac took a few more bites of pizza, paused, and leaned into J conspiratorially. "Let's work here!" he suggested slyly.

I am amazed, ashamed even, when I remember how hard it was to accept Isaac's diagnosis. "It gets better," people would tell me, and in my grief and confusion, I discounted what they said. I thought that meant they had settled for reduced expectations, for a sad, constrained sort of life. I thought they were humoring me, so I would be able, like them, to wake up each morning and put one foot in front of the other.

But when I think about what autism has really come to mean in our lives, about everything we've learned, I feel a sort of gratitude. For pancake breakfasts, and kisses, and silly games, for sly comments and fart jokes and the simple pleasure of his company.

I don't mean to candy-coat it. It's not always easy, and it's tougher for some than for others. But there is joy too, and peace, and grace.

Don't be afraid.

Daily Life, a Day at a Time

I've been thinking about the big things lately: the past, and what it means, the future, and what it will bring, and, most importantly, what's happening now. For a long time after the diagnosis, we lived in a sort of siege state: running from evaluation to evaluation, therapy to therapy, hoping for the magic sign (or someone) to tell us it was alll a big mistake; he's just a late talker, he's just shy, he's just on his own schedule.

Isaac is in many ways at the edge of the spectrum: he's become verbal, he's blessedly free of medical issues, he's social (with adults), and sometimes we even forget a little that he's different. But if he's tired or ill, or going through a growth spurt, or in a new environment, or around other children, he can become very stimmy and remote, and it all comes rushing back: yes, he is a different kind of child.

At a certain point, we moved from the initial period of crisis into something new, something that felt a little different. Oh yes, I finally realized, this is autism. This is your life on autism. And that has brought a whole host of realizations along with it. Sure, some things are better. Isaac continues to learn and grow and surprise and delight us. We're no longer obsessively over-analyzing everything he does. We've moved into a state of acceptance, and of (generally) knowing how to deal. But there are some other important realizations too. A simple cold can throw us all into chaos. I was starting to look, and feel, tired and haggard all the time. We need to eat better, get more sleep, exercise and generally take better care of ourselves. We need to find time to enjoy what we're doing, right here and right now. We need to move past the siege state into something more manageable for the long term.

And that is the crux of it: learning how to live, really live, with an autism spectrum diagnosis. Last week it included a trip to the steam trains for Isaac, a trip to the gym and record store for Daddy, and a cool new pair of jeans for Mommy. This morning, J. will take Isaac to the local farmer's market, where he'll eat fresh peas right from the pod and demand a challah roll from his favorite bakery. Tonight we have a babysitter and we're going to see the new Harry Potter movie and then have dinner together. Oh, and actually talk. To each other. In about five minutes I'm going to do three sets each of sit-ups and push ups, and a few yoga stretches, to get my blood moving and welcome the day. (How can I do this, you ask? Everyone else is still sleeping). It's small, but it's progress, and that makes it feel huge.

Take care, my friends. Do something nice for yourselves this weekend.

Alternate Reality Theater

I've been trolling the Internet lately, just to educate myself about some of the therapies we haven't explored, and I've gotta tell you...it's like falling into a pool of quicksand. Just sucks you down into alternate realities and a whole lot of very destabilizing "what if" scenarios. (Raise your hand if you are thinking, "Susan, step away from the Internet!") But stay with me a moment. Did you know that the Autism Society of America lists 17 different therapies in three categories? All the common ones are there: ABA, Floortime, OT, ST, RDI and more, plus the biomedical interventions and the complementary ones such as music, art and animal therapies--including swimming with dolphins. In the spirit of full disclosure, we've actually heard good things about a music therapist in our area, but the truth is that we're overscheduled as it is, so it would start the whole spin cycle of "what do we cut, how do we fit it in, can we afford it" (that would be a no), and on and on.

Don't get me wrong--I've seen enough by now to know that choice of therapies is one of those polarizing topics that can lead to hurt feelings and raised voices and a whole lot of unpleasantness all around. So I don't go there. But today's experience brought back the very same rush of panic I felt on that first day in the developmental pediatrician's office, when the floor opened up and sucked us into a future we were never expecting. "Are these the right things? Should we do more? What about...? What if...?" The doctor scribbled a few names on a yellow legal pad and wordlessly handed them to us. We made some phone calls and some judgment calls and then some more phone calls, and things started to happen. Ok, good.

But I hope that someday soon the parents who perch anxiously on the scuffed brown couch as they watch their future take a hard left turn have an easier time than we did. I hope that as they face their news they are greeted with better, more precise information, so they can make choices that they believe in and that will help them feel like they're doing the right things for their child. I can tell you that it's gotten better for us since that day. We are learning more all the time, from stumbles as well as successes, and we generally feel more confident that we're on the right path. So, in the absence of that crystal ball, I wish the same for the next parents. I wish the same for you.

Searching for Therapists

By Jordan Sadler, SLP

As Susan wrote about so eloquently, the period of time around an autism diagnosis is acutely distressing for parents.  One of the first things parents are generally told to do is to go home and immediately gather a team of competent therapists to work with their child; whether this is done through a school district, early intervention, or privately, this is a daunting process - and would be even without the overlay of grief and anxiety.  Parents then discover the variety of treatment strategies available to them; sometimes this may give them a burst of hope for their child, but my sense is that initially it's nothing short of overwhelming.  So Susan has asked the therapists contributing to The Family Room to do what we can to help parents figure out what to look for and what to ask when searching for good therapists.

There are many ways to approach working with a child with an autistic spectrum disorder.  I have read recently that, really, any of the most popular strategies will result in positive gains, assuming the child is receiving enough of it as soon as possible, and the parents are involved in the treatment as much as possible. This is not to say that I have no preferences when it comes to treatment, but the fact is, it is going to be up to the parents to determine whether they are most comfortable with DIR/Floortime, RDI, SCERTS, ABA, PECS, and/or TEACCH, to name a few big ones.  Some families will find that one clearly resonates with them immediately and others will need to ask the diagnostician, their pediatrician, other parents, and the Internet for advice before making the decision.  Of course, you want to find therapists with experience, proper license, and good training.  But here are some additional things to look for - and pitfalls to avoid - when searching for your therapists:

1.  If a therapist suggests to you that you have "wasted time" by not getting help earlier or by taking part in another type of treatment, do not hire that person.  A good therapist has no interest in making you, the parent, feel guilty or incompetent. 

2. Similarly, consider all statements about missing out on your child's "window of opportunity" to be scare tactics. Yes, those neuronal connections develop quickly in the early years, but they continue to develop throughout the life span.  By waiting two weeks for your first session because of that family vacation you already had planned, you are not harming your child.      

3. When a therapist or treatment center has a blanket policy of not allowing parents to take part in therapy sessions, consider this a red flag.  If your child seems to be overly distracted by your presence in the room and needs a period of time alone with the therapist to establish a relationship before introducing you back into the sessions, so be it.  But for a parent to be denied all access to view and participate in therapy, and for no coaching to take place?  When the parent asks for it directly?  Not good.

4. Pay attention to the attitude of the therapist when you make the initial contact.  Does he/she try to sell you on a particular treatment, assuming it works for all children, or are you asked questions about your specific child?  Be cautious about one-size-fits-all approaches and those who feel they can treat all children with one treatment approach.  You want to find therapists who see your child as a unique individual; the good therapist will meet your child where he or she is and build from there.

5.  Find therapists who are willing to take the time required to establish a positive relationship with your child before expecting any learning to take place.  There are children who will walk in the door and feel comfortable, connected and ready to learn.  Then there are others who need a lot of time with a therapist - time without demands, when the pair can simply work up to joyful interactions at the child's own pace.  This might involve spending a session lying on the floor together, listening to the child's favorite music, and requiring absolutely nothing of the child.  The child may start the session cautious and disengaged, but by the end of the hour may be cuddled up with the therapist, stealing glances and smiling at her.  This time is well-spent because within a few weeks, the pair has formed a trusting relationship in which the child is willing to take some risks and move outside of familiar patterns.  Now learning can take place.

6.  Be sure you are getting consistent communication from your therapist and find out if he/she communicates regularly with other team members via phone calls, email, sharing notes, etc.  A therapist operating as a cooperative member of a larger team is going to have a greater impact on your child's development.

In the end, you want to work with professionals who respect you as a parent and love your child for being the amazing individual he or she is.  When these qualities are in place, so much growth can happen for your child.

To reach Jordan directly, email: Jordan [at] communicationtherapy [dot] net.

The "A" Word

Sorry for the silence last few days--we were on vacation (more on that later).  It occurs to me that this is probably a good time to clarify my stance on the dreaded "A" word.  It's been a psychic and semantic battle since day one (in our case, the first day that word was uttered to us, as parents, about our son).  But to be clear: Isaac's diagnosis is actually the apparently milder, but spectacularly undescriptive "PDD-NOS," which stands for "Pervasive Developmental Disorder, Not Otherwise Specified."  I'll let you look it up but basically it is used for kids who don't meet the full criteria for autism but exhibit some of its features.  But, to confuse things further, PDD-NOS is considered to be "on the autism spectrum," which opens up a whole host of issues, questions, decisions.

Some reject the notion of a spectrum and say that autism is binary: it should only be diagnosed using the DSM-IV, and kids who don't meet the criteria don't have autism.  Under that scenario, people tend to describe the symptoms (speech delay, sensory integration difficulty, etc.) but not ascribe them to a broader category or syndrome.  Others accept the notion of "spectrum," however broad and ungainly. Our point of view has been to accept the label inasmuch as it gets us services, with the understanding that it is entirely provisional--not predictive of the future--as Jesse says in his post below ("What I Wish We'd Done"), not prophecy. 

This is an intensely personal decision, and not one to enter into lightly.  I can't tell you what you should do, but wanted at least to lay out how we've been thinking about it.  I'd love your comments.

What I wish we'd done

We went over to Marin and suffered through sessions with developmental pediatricians. Twice, actually: May and Nov. of 2005. We could see the whole rest of our lives laid out in front of us: some monotonous, gray, sad routine with all the color leached out, the way I imagine the Dust Belt in the depression.

All of this is natural and probably healthy. We needed to feel shock and sadness and a million other things. But we also needed to take care of ourselves emotionally and financially and think intelligently about our options. (All of this is far clearer in retrospect. I’ve since become much more able to sign a paper with words or terms on it that upset me if it’ll help Isaac and us get what we need.) I wish we’d been able to feel what we felt and then separate it from what we needed to do. 

What I wish we'd done:
1. Realized that a diagnosis, especially at such a young age (Isaac was not even 2 at the time of the first session), does not guarantee anything and is essentially an interim progress report/guesstimate. It's current events, not prophecy.

2. Realized that, whatever our feelings about our child's potential and abilities and progress, the label did not have to reduce him in our eyes to anything less than what he was. It could have, certainly.  But that was really up to us.  The label did carry enormous potential to make our lives somewhat easier, at least financially.

3. Found out, immediately, what our insurance would cover with an appropriate diagnosis and what it wouldn't. Like casinos, insurance companies are not there for your best interest. But if you learn the rules, you may be able to get some coverage. What minimum info needs to be on the submission to get it paid? What will and won't they pay for?  Will they reimburse speech? OT? An aide in the classroom? Floortime?

4. Where else can you get help? If your child is under 3, get in touch with your regional center; you will need to suffer another developmental evaluation, which will probably feel like piling-on (our head evaluator sort-of-joked that our son met “only five of the six criteria for autism, so he's almost there”—hilarious) but which can help you learn to manage all this. Regional centers can be great helps in providing support for services, classroom aides, and social support; in our experience, some of the people there were extraordinarily personable and helpful in guiding you through what can feel overwhelming. If your child is over 3, you will need to through this with the school district. This can have its ups and downs, but it can be useful in getting appropriate help. Isaac has really liked his district-provided school, and we’ve been very happy with and touched by the commitment and skill shown by all of his teachers.

I think that our biggest lapse was letting the paralysis get to our heads as well as our hearts. Emotionally, we were traumatized, but we weren’t going to make it any better by just feeling awful. Seeing what the right diagnostic codes could do for us, and what agencies could do for us, meant a great deal in making our lives easier; it was our own form of magical thinking to assume that somehow writing some numbers down on a claim form or getting assistance from various organizations would mean writing them into our vision of our child. That's just not the case.

The more you can remember that the world still works the same way--trust yourself and your sense of your child; don't fall into an emotional pit--the greater your chances of getting through the throes of we-just-got-diagnosis-X-and-omigod in one, or at least no more than a few, pieces.

 

On Being a Mother with a Therapist's Eyes

By Jordan Sadler, SLP

His name is Will.  He is around 3 years old and beautiful: big brown eyes that twinkle when he makes fleeting eye contact, and one large dimple.  He stands in the center of the circle of children, and when the music starts, he grins and starts to spin, joyfully.  I can't help but smile when I watch him. I also can't help but perform an unconscious assessment.   I haven't heard him utter a word, but I've heard a few vocalizations.  He claps his hands when the song says to, I note.  He seeks out eye contact and returns my smile.  He goes to his nanny for comfort when he needs it.  Should I hand them a report when they leave?, I ask myself sarcastically, wishing I could just focus on the class. On occasion, Will runs from the group and does laps around the periphery of the room, looking at the place where the wall meets the floor out of the corner of his eye until his caregiver corrals him back.  At least once during each class, a particular sound in a song becomes too painful for his over-sensitive auditory system and he screams.  And cries. The intuitive music teacher switches to a lullaby in an effort to calm him.  Sometimes he can be soothed but often his nanny carries him out, speaking kindly to the frightened little boy.  She knows, I think.  She understands this.

Then there is Sam.  He is 2 years old.  He sort of manages in the "gym" part of Gym and Swim, but I notice him engaging in self-stimulatory behavior with the lights up on the ceiling.  If left alone, he seems content but when another child comes close, he screams loudly and pushes the child away.  When it's time to get into the pool, he sobs.  It starts in the locker room and rises to a fevered pitch when he sees the pool.  "I don't understand why he doesn't like this," sighs his mother, holding his shaking body with her own feet dangling into the water.  Clearly, she is the one who wants to be in the pool with the others, singing "Five Little Ducks".  She wears an agonized, exhausted expression.  She too leaves the class early, deflated.   I find it painful to watch.  She doesn't know yet.  She doesn't understand. 

I am not there as a therapist.  I am there as a mother myself, attending classes with my own toddler.   Without fail, there is a child in each class we attend.  A child who may or may not fall somewhere on the autism spectrum, but without a doubt has significant language and sensory needs.  I do not doubt the new 1 in 150 estimate.  Each time, I can't help but watch the child and his mother with both a therapist's and a mother's eyes.  I want to reach out, say something.  Something beyond, "What a beautiful boy," or "Wow, look at him climb!", the words I find to point out all that is wonderful about their children.  Especially to the ones I suspect don't understand yet.  I find their confusion and pain unbearable.  I have to forcibly tear my attention away to focus on my own child, who is so happy to have a special day with me when I'm not at work.

I grapple with this question often:  can I say something?  If so, what?  I believe that it would be in the child's best interest to let his parents know that there are other children who struggle with these things, that there are people who can help them.  Especially when they could be getting early intervention.  Especially when the child's mother looks so overwhelmed.  And yet, when I am there as a fellow parent, dancing around the circle with my own child or negotiating over a toy, it doesn't feel right.  I feel that it would be very intrusive.  What is appropriate? 

What would that mother want to hear that wouldn't put her on the defensive or leave her feeling criticized?  Or, if she is angry at me but weeks or months down the road does hear my words and pursues help for her child, is it worth it?   I welcome any experiences and insights readers want to share.

To reach Jordan directly, email: jordan [at] communicationtherapy [dot] net.

Between the Lines

This was what diagnosis was like for us: Imagine being underwater and having someone shouting at you from above the waterline. Everything is muffled, slow and pressing in from all sides, and your lungs and head feel like they will explode.

Getting back in the car after the appointment is the worst--that heavy sense of dread and fatigue, each of you trying to look brave for the other. Both of the developmental pediatricians we saw were in Marin County, so Jesse and I started a little ritual on the way back...a stop at In-N-Out Burger after each appointment, a grim treat. Somehow it was always raining.

Pretty much everyone was helpful, intended to be helpful, or, in some less fortunate circumstances, was simply paid to appear helpful. We were lucky enough to connect with some of the finest resources in the Bay Area, most of whom are shockingly busy. Eventually we made our way through diagnoses, paperwork and all the usual mind-numbing processes required to identify, document and provide services for the special needs child.

The parent of a kid with special needs will quickly become intimately familiar with the official resources available to you. In most cases, no matter how good these resources are, they won't be enough. What Jesse and I really needed from day one was something to help us get from point "A" (the rainy parking lot of the developmental pediatrician's office) to point "B" (a plan for our kid). Right now, there are few places in this country that do this well, or at all, so we're left having to piece it together ourselves.

But, during the course of the last two years, we found the most insight, reassurance and hope "between the lines": a playground conversation with a Dad of an older child with similar challenges, a late night email from one of Isaac's therapists, a new phrase learned and repeated with delight (Isaac is fond of saying "Rock ON!" lately), a suggestion from a therapist that you know can't possibly work, but somehow does.

So, I am planning to write about the things that work for us, that bring us insight and comfort, and I'm asking the people who have been most helpful to Isaac and us to share their experiences here. My goal is to create two things: a unique, personal resource that talks about the experience of raising/working with a special needs kid; and a network that replicates in virtual space what we have developed over time in the real world.

I want this to be a place where people feel relaxed about coming by, kicking off their shoes, having a cup of tea or a glass of wine and much-needed conversation. Talk to you soon.

Welcome to the Family Room

Last night, as I lay next to my 3 1/2-year-old son, willing him to go to sleep already, I started thinking about everything I've learned in the past two years since we got our diagnosis: what it means to get a diagnosis, what to expect---and not expect--from the medical community, how to find therapists and figure out if they're any good, how to deal with insurance, how to deal with birthday parties and family gatherings and school and toys and haircuts and airplanes and food and sleeping and well-meaning strangers and work and the grocery store and bathtime and babysitters and the car wash, which Web sites are useful and which ones leave you breathless at 3 a.m. with the anguish of parents struggling to understand what is happening to their families.

And I've learned more about who "gets it": which therapists and teachers see my son as the lovely and unique guy that he is, who sees him as a set of symptoms, and how to deal with that and advocate for him.

I've learned to trust my gut, my husband and, most importantly, my son.

I can't tell you it's easy to do this. Both my husband and I work full time. We don't live close to family who can help us on a daily basis. We don't get out a whole lot. But we have good help, and a wonderful extended family of people who who have helped us tremendously. Our son has a lot of potential, we're told. And we have slowly built a collection of tips, resources and understanding about where we are and what we have to do from here. So this blog will be our place to share the stuff that we've found to be useful.

Yesterday the CDC released a report that nearly one in 150 children has autism. There are a lot of us, and more every day, so we'd better figure out a way to help each other out.