The Family Room

Zen and the Art of the IEP

It's that time of year again: my throat is raw, my eyes start itching and I can feel a dull headache starting at my temples. Yep, you guessed it: IEP season. The IEP, or Individualized Education Program, is the result of well-meaning legislators and educators to provide an appropriate and individualized education for children with disabilities. It's a time to review forms, and more forms, each of which lays out tiny and discrete hoops for your particular small hero to jump through. To wit: has he learned appropriate use of prepositions? Can he satisfactorily pretend to have a birthday party? Can he draw a square? A person? A faithful representation of the cathedral at Chartres?

If your child is anything like mine, he will jump readily through some hoops, grudgingly through others, ignore several altogether, and light a few last ones on fire and sprinkle the ashes all over your living-room carpet. This leads to a deeply surreal IEP meeting, in which you, the parent, attempt to tease out the actual meaning of these skills (does it matter that he's nailed "on top of" but still isn't so clear about "under"?) and their impact on his future life and prospects. May I make a suggestion? Stop. Right now. Before you feel the impact of your head hitting the wall multiple times. You cannot know this. I have been there, and it's not worth the trip.

Even if you are lucky enough to have strong and committed teachers and school district representatives who are genuinely trying to do the best by your child, you will still most likely survive the meeting with a new appreciation of what it must feel like to be an actor in a bad soap opera. They say something. You say something. They say something back. Nothing makes a whole lot of sense, but you have to go with it. Why is this, you ask? Answer: you cannot fully know. But just consider their most likely motivations, in no particular order: 1) needs of the many kids they serve 2) the needs of your child; 3) fear of liability; and 4) budgetary and other stuff.

Now for a bit of practical advice:

1. Assume (unless proven otherwise) that the school district is doing the best they can.
2. Know what your child requires, and his rights, versus what's being offered--and what you're willing to compromise on.
3. If you get frustrated, don't get mad, but do be persistent. This is really easy to say, incredibly hard to do.
4. Don't sign anything in the room if you can help it. Even if the meeting is sunlight and roses, a good night's sleep can help you see more clearly the next day.

I'll write after our meeting and let you know how successful I was in taking my own advice.

Toy Story

So for some reason I decided today to go through the toys in Isaac's room and weed out the broken, the outgrown, the parts to-who-knows-what and the stuff that, let's face it, he's never really played with, or played appropriately with. From the start, he wasn't much of a toys guy, preferring books, music, snuggling, physical play and long walks. A lot like us, really.

So I told Isaac we were going to his room to make a big mess (gotta love reverse psychology), put on "House Party Time" by Dan Zanes, and we (more specifically, I) got to work. He emptied baskets onto the floor, while I crawled under the bed, reached behind the bookshelves and found a great number of things that at some point in the past I, or someone else, had thought Isaac might like: the racetrack that broke after one day, the plastic pieces to a toy castle that I had stuffed in the closet during a particularly severe period of door obsession, random pages ripped from books, the spines of those poor denuded books, dried Play Doh, broken crayon pieces. And Isaac got to throw them all into the trash--big fun for him (and, who can forget, so good for the visual-motor coordination).

But there were a few trapdoors. Our beloved Richard Scarry books, which are apparently so visually oversimulating for Isaac that he can fixate on one endlessly, moving it past his face while he stares at it through the corner of one eye; his little wooden Thomas set, which my sister bought him for his second birthday and I excitedly set up, only to burst into tears as he took each piece of track apart and put it in his mouth; a plush turtle puppet I bought in an effort to jumpstart his pretend play, which he found so terrifying that I had to hide it in the closet for months (Was that imagination? Maybe even a good sign?)

It's better now--much better. The Scarry books are still a minefield, but he adores Dr. Seuss' Oh, The Places You'll Go! He likes toy cars and plays a little with the Thomas train track. And several months ago he finally started picking up crayons. So...progress. But it does hit me hard sometimes, this sense of norms, and the many ways that he just...sideswipes them. And I wonder what he'll be like in two, five, ten years--whether he'll be anxious, lonely or happily quirky. Whether he'll ever figure out pronouns. Whether he'll have friends. And whether he'll ever be able to tell me what he did that day, and how it feels to be him, living in this world.

Five Inspiring Things in the Last Week

One: getting home from work [late] the other night, to find out that Isaac had told Jesse: "I want Mommy to come home!" This from a boy who had two words--"No" and "Daddy"--16 months ago.

Two: reading Kyra Anderson's piece, "Imagine Walk," in which she discusses talking to her son Fluffy about Asperger's. I'll be grateful to be half as serene, not to mention articulate, when that day comes.

Three: reading the report from Isaac's parent-teacher conference (Jesse went this time), in which his teachers thoughtfully chronicled Isaac's gains in spontaneous language and play, and mused about what they could do to sustain his engagement in school activities.

Four: the fact that Isaac now knows who's a boy and who's a girl [mostly--short hair on women trips him up], and finds it endlessly funny to insist he's a girl, then collapse into giggles.

Five: stumbling upon so many lovely, joyous, powerful blogs about families living with kids with special needs: speak softly, by Vicki Forman, MOM-NOS, Pinwheels, by Jennifer Graf Groneberg, and so many others I am only now discovering.

One for good measure: Jesse, who takes Isaac on long, meandering walks, and sweetly shares his love of music and words (most recently, "Goo Goo Muck," by the Cramps, which Isaac has memorized and totally adores.)

Love, Love [Tough] Love

I've been quiet this week, mostly because we are in a new phase with Isaac; one that involves a) a massive sleep boycott and b) multiple nightly visitations when he wakes during the night. I haven't been too concerned about it, given that he's always been a good sleeper, he's not acting differently otherwise, and it's come with some nice gains in language and engagement--but it's definitely wiping us out over here.

And it's making me face a few facts about myself as a parent: how much unconditional love I give versus, well, tougher love.

There were a few moments at the Jumpstart conference a couple of weeks ago that clued me in to the ways therapists and other professionals view us parents. There was one point In Lynn Koegel's presentation about her "Supernanny" experience when she and Jo (aka Supernanny) were trying to get the boy to ask for something using language rather than grunting and crying. The child was getting progressively more distraught, as was Mom. And there was a ripple of recognition in the audience, one that said: "Yeah, I've been there when Mom (or Dad) caves at the critical moment. Happens all the time." "Okay," I thought, "easy for YOU to watch my child suffer through a milestone that most kids blow past without a moment's thought." But--let's be honest--I know it's not.

So here we are, night number I've-lost-count in Operation "For God's Sake, Go To Bed, Isaac!" We've tried sitting in the room, progressively moving closer to the door: "I want Mommy to get on the floor!" We've tried a kiss and a brief stay in the room: we lost count after putting him back in bed bed 30+ times in one night. Tonight, after 45 minutes in the chair listening to his musings about his favorite shapes and the various characters in "Bob the Builder" ("Mr. Sabatini! EXTREME Mr. Sabatini! I want a triangle!") I finally crawled into bed beside him. He was out in 5 minutes.

Clearly, I can't do this forever. I realize it's as much for me as it is for him--perhaps more. He'll be four this summer, and it seems fairly certain at this point that he'll be an only child. I can't help thinking that I won't have this option much longer--that I have to store it all up now for later, when he's older and we inevitably lose the physical closeness we have now. But we have to get through this phase, and he has to to be more independent at the end than he was at the beginning. And we all have to get some sleep. And I know I have to stop obsessing about whether this is some sort of neurological wake-up-call, and a signal of SOMETHING BIGGER, and just go back to the basic task of helping Isaac get into a new sleep groove, bit by bit. (I was talking about this a couple of weeks ago to some special-needs-parent friends and we decided that you know it's time to kick your kid out of bed when...his stubble scrapes your cheek in the middle of the night.)

So, what's your prediction? Will I cave again tomorrow? Or will consistency and common sense prevail? Tune in for another exciting episode. And please--wish me luck.

That Word Again

When I got home tonight, there was a note from Isaac's school district case manager reminding us of our upcoming IEP. She had stapled her card to the note, and for the first time I noticed her job title: "Preschool Autism Behavior Content Specialist, Special Education Services."

That word again.

Early on, Jesse and I spent countless hours in the "is he or isn't he?" debate, cataloguing every shred of evidence for and against. So social! So remote. So easygoing! So rigid. All kids do this! No, it's a symptom. And on. And on.

You know how when you're with someone long enough, there are some conversations that just keep resurfacing? We started calling this one "conversation #862, in which we discuss whether Isaac does or does not have autism." (Another example: conversation #406, in which I am reminded to replace the toothpaste cap on the toothpaste. It's a blind spot. I admit it.)

For days we'd be passionately convinced that Isaac wasn't, you know, that thing--that he just has a speech delay, and some sensory issues, and so that's why he's not so social with his peers, and labels are dumb, and nobody knows anything anyway...and then one day it would hit us in the gut, a sickening feeling: maybe we should just stop fighting this.

But a funny thing has happened, not what I expected at all. I realized Friday, as I sat in the Jumpstart conference, and again tonight as I looked at the card on my kitchen counter, that I'm not so upset by That Word anymore. I think I've called a truce.

And I feel sort of okay about it. That Word is in our lives--for now. It's on our paperwork, it's in our emails, it's in the books on my nightstand. But I'm not convinced that it'll be there forever.

Jumpstart Conference: Learning to Learn, Learning to Unlearn

I spent the day yesterday at the Jumpstart Learning to Learn conference. The program was founded by Dr. Bryna Siegel, director of the Children's Center at Langley Porter/UCSF Autism Clinic, "as a national model to provide needed training to the community of parents, teachers, and clinicians who interact personally and professionally with young children with autism."

From what I could tell, the professionals in the audience outnumbered the parents by about three to one, which I found both empowering (good--we'll be on the same page) and a little scary (uh, you mean you guys don't know this already?) But okay, this is moving so quickly. Let's all learn at the same time.

Dr. Siegel gave the first keynote and Dr. Lynn Koegel gave the second. (If you recall, she was the expert called in for last year's Supernanny episode with an autistic child, which she recounted--amazing story). Then there were two tracks of three presentations each. Based on our most pressing issues at the moment, I opted for Dr. Pamela Wolfberg's presentation on integrated play groups, followed by Dr. Siegel's talk on how to match interventions to a child's unique challenges and learning styles. (For a complete agenda, click here).

As much as I generally avoid these things (death by Powerpoint), I got a lot out of it. Here are a few broad themes:

1. Moving away from diagnostic labels, and toward specificity: understanding each child's strengths, challenges and learning styles, and--praise be--matching the interventions to his or her actual needs. Thank you, Dr. Siegel.

2. Engaging the child is far more important than the type of therapy you are doing. There are dozens of therapies, and none is a magic bullet. But engagement trumps everything. It was quite poignant to hear Dr. Koegel, a behaviorist, talk about how in the early days she saw her patients progressing, but the kids (and their therapists) never smiled. Then, when they made the sessions more fun, the children began to make faster progress! It was also quite charming to see how funny and self-effacing she was about admitting this in public.

3. Using everything your child does--echolalia, stimming, whatever--as information to help you better understand what he is trying to communicate, and what he may need. This theme pervades Dr. Siegel's work (and, of course, Dr. Stanley Greenspan's) and there's also a wonderful blog called MOM - Not Otherwise Specified that has a brilliant post on the topic: "Dr. Strangetalk or: How I Learned to Stop Worrying and Love Echolalia." And let's apply that philosophy to stimming too, shall we? (BTW I'm not saying that we shouldn't try to help our kids move past these things...just that we shouldn't obsess about them too much. And yes, my dear husband, I will remember I said that.)

4. Play is core to the treatment of autism, because play engages every aspect of a child's physical, communicative and social skills. Dr. Wolfberg is the founder of the Autism Institute on Peer Relations and Play. The work she is doing with integrated (typical and ASD) playgroups is not to be missed. The highlight for me: a video showing how, over the course of a few months, they were able to draw a child with apparent Asperger's into the imaginative play of some typically-developing peers--absolutely thrilling to watch.

5. Don't think of insistence on routine as evidence of a disability if a child has difficulty decoding language. In other words, put yourself in his shoes. Dr. Siegel gave this example: you are in China, and have been invited to give a speech. You get to your hotel, and no one speaks English, and you don't speak Chinese. They give you your key, lead you to your room, and you go to sleep. The next morning, someone knocks on the door at 8:00 and takes you to the dining room for breakfast. So, what will you be doing the next morning at 7:55? Waiting for that knock, of course! Now imagine that when they come to get you, they lead you to the elevator, but it doesn't stop at the dining room--it goes directly to the lobby. How do you feel? Hungry? Confused? Powerless to communicate? Like throwing a tantrum until you get your coffee?

I only have one suggestion for next time: interactive breakout sessions. It would be great to get more dialogue going, especially among parents and professionals (and give us the opportunity to network in a more relaxed environment--we have so few opportunities for that in daily life).

What came through most strongly at the end of the day: a healthy respect for the mysteries of autism, tempered with the confidence that we're moving in a promising direction. Works for me.

One Question?

As this site develops, I've been thinking about ways to make it more of a community resource and draw in the participation of more professionals who are doing great work. So, in that vein, I wanted to ask you: if you could ask a therapist or physician any question about their work and experience, what would it be? We could focus, for example, on the period right after diagnosis--best advice on how to get started? Biggest mistakes parents make? or on a specific issue such as facilitating peer play, or even on what tends to get in the way in parent/therapist relationships. Anything appeal to you? Other ideas? If so, please post a comment and I'll collect them and get this going.

I'm off to the Jumpstart conference today. I'll post this weekend on what I learn, and my observations on the event.

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.

Defying Description

Isaac is in the bath. He looks up at me suddenly, grinning, thinking of something. His hand darts under the water to one of his toy cups, which he fills with bathwater. He brings it to his lips, still grinning, looking directly into my eyes. I pour it back into the tub. "Isaac," I say, "we don't drink bathwater. It'll make your tummy hurt." He looks a little put out. "I want to eat water," he protests, trying to wrestle the cup away from me.

He's three and a half now, and this little interaction is full of miracles. I can't help myself from cataloguing them, a bit obsessively, I admit. 1) he has a plan; 2) he knows I won't agree with said plan; 3) he thinks that's funny and tries it anyway; 4) wow--great eye contact; 5) when he doesn't get his way, he tries a new strategy; 7) hey--he's never said that before!; 8) when words don't work, he tries brute force.

Good planning, pal. Way to play your Mommy.

Most parents would find this little sequence cute, possibly a little exasperating, but not worthy of a trip down the hall to tell Dad (much less a blog post...we are not such navel-gazers after all). But in it I see intelligence, and humor, and theory of mind, and ease, and mischief, and hope, and I know we're luckyluckylucky to have a child who is capable of all these incredible, brilliant, ordinary little things.

There are times when I nearly forget it all--the evaluations and diagnoses, the endless therapies, the total lack of privacy (half of the Bay Area's special needs professionals have seen me in my pajamas, or worse, by this point), the uncertain future, the constant minute deconstruction of his every utterance and accomplishment and what it means, and what it could mean, and, and, and, and, and.

After awhile, Isaac looks up at me and says, "I want to read Dr. Seuss." So I get him out of the bath, towel him off, put on his nighttime diaper and help him put on his pajamas, and we sit on the bed and open up Oh, The Places You'll Go! And I try just to read, and not to think about anything in particular, enjoying his enjoyment, and his company, and his warm soapy smell.