The Family Room

Regular Boy Haircut

It's common for kids with sensory integration or autism spectrum issues to be afraid of haircuts. When you think about it, it's a pretty rational fear--a stranger straps you into a chair, wets your head, comes at you with scissors--but for kids on the spectrum even the sound of those scissors (or God forbid the electric trimmer) can send them over the edge into a flailing, wailing meltdown.

Our local shop is tricked out with toys, lollipops, even a Thomas train table to soothe the reluctant guest. The first time I brought Isaac he was about a year old, and the Russian woman at the front took a look at him, then me, and asked: "You want regular boy haircut?" Honestly, I had never even thought about it. What are the options, I wondered? Mohawk? Mullet? Bowl cut? "Sure," I answered. "Regular boy haircut." We went home in one piece: he with a new toy train, me with a slightly damp envelope containing a few wisps of his baby hair to keep as a memento.

Isaac withstood the first few haircuts pretty well. He let himself be distracted by one or two of the toys and didn't seem to mind the process much. Then, sometime around his second birthday, I brought him in but wasn't able to stop the haircutter before she spritzed him with water. It was all downhill from there: screaming, crying, hitting, falling to the floor--if you're reading this, you've probably been there. The woman did the best she could with a living, breathing, screaming target. He went home that day unhurt, but with puffy eyes and a cut that made him look a little like Edward Scissorhands on a bad hair day. I left a ridiculous tip.

The next few were similarly awful, so much so that at one point he'd start to cry whenever we drove down that particular block. So without really meaning to, we would stretch out the time between haircuts until he started to look like Elvis junior: at which point we would break down and bring him in again (although I'm telling you: I was sorely tempted to try barrettes). He had to be cut standing at the train table, with his hair dry, no smock, and at least one adult holding him at all times. We asked our ABA providers for ideas, and they suggested we try a social story about haircuts, and weave it in with some pretend play. It was slow at first: he resisted it and didn't seem to want to play haircut any more than he wanted to get one. But we persisted, and started to notice that the next time was easier (i.e., crying, but no flailing and hitting) and the next time, easier still (added bonus: the haircuts got better too). We would reinforce it by casually saying "Isaac, you really need a haircut" while ruffling his hair. Sometimes he'd disagree, saying "No haircut! Haircut's all done!"

Then about a week ago, Isaac was taking a walk with Beata, his nanny, and the wind was blowing his hair into his face. He looked up at her and announced "I need a haircut!" So Jesse took him a few days later. Isaac still cried, but it was bearable. He later informed us that he wanted another one. We didn't oblige, but at least we know we have the option for next time.

Strategies for an Effective IEP

Interview with Fiona Zecca
Early Childhood Development and Behavioral Specialist

It occurred to me after my recent post on the Individualized Education Program (IEP) process that it might be helpful to have someone discuss this issue from a professional's point of view. So I asked Fiona Zecca, an early childhood development and behavioral specialist, for her perspective on how to make this a more effective and less stressful experience. Fiona spent 15 years working in school settings as a special day class teacher and an inclusion specialist with young children with special needs. She also had the opportunity to work as part of the Intake Assessment team at the San Francisco Unified School District. She is now in private practice, offering consulting services to schools and families around the Bay Area.

How would you advise parents prepare for the IEP?
1. Be familiar with the format and purpose of the IEP.
2. Try to find someone who has been through it to give you some idea of what the meeting will look like.
3. If possible, try to get copies of any of the assessment reports conducted before the meeting so you have a chance to read them and organize any questions you might have.
4. Ask for your parent rights ahead of time and read them over so you understand them and don't waste precious time during the meeting learning what they are.
5. Although the IEP team members will bring different ideas on potential goals for your child, I recommend writing down a few ideas on what you would like your child to achieve in the next year. Be specific, and think of things that you wish your child could do: in a social setting, to get ready in the morning; when communicating with his grandmother. Try to think of all developmental areas--language, gross motor, fine motor, sensory integration, social and self-help. Be realistic, but don't be afraid to have some things to work towards.
6. Try to find out ahead of time what services the district offers for your child's age group.

Is there a good resource you can recommend for parents to go to understand their--and their children's--rights?
Yes. Here is a link to the Special Education Rights of Parents and Children, published by the California Department of Education. [Note: if you live outside of California, search the Internet for "Special Education Rights" and your state.]

What should parents do if they feel they are not getting the services they need or are entitled to?
Explain to the team what services you would like and why. If you have any previous assessment reports that state recommendations for your child, present them to the team. Be realistic, but don't give up easily. Continue the dialogue with the IEP tem and hope that you can come to an agreement. This may mean compromising on each side. If this doesn't work, don't be afraid to dissent on the IEP.

Are there any common misconceptions about the IEP process that you'd like to clear up?
The IEP is a legal document stating the special education servies that your child will receive, but don't think that if you sign it you are bound to the parameters in the IEP for the duration of the IEP (typically a year). You can request an IEP at any time--they are geared to be done annually, but you can have one whenever you want. In fact, you can request at the time of the IEP that the next IEP be done in less than a year (i.e., six months). In other words, if you sign and then later conclude that the services being provided for your child are not a good fit, you can request an IEP (in writing) and, if necessary, dissent at that time. Also, it is helpful to know that you may bring anyone you want to the IEP without notfying the other team members (with the exception of legal representation, for which the district requires prior written notification).

Any other advice?
Don't get caught up in the formality of the IEP. Try not to let it make you anxious or nervous. You know your child best, and you are your child's best advocate. Try to be positive and open-minded and hope that the IEP team members have the best intentions for your child, but, if necessary, be firm on what you believe your child needs.

If you would like to ask Fiona a question, leave a comment here or contact her directly at fiona [at]fionazecca [dot] com.

Integrating Floortime and ABA

Interview with Melissa Willa, M.A., BCBA
Gateway Learning Group

When I first contacted Melissa Willa a little more than a year ago, I was extremely nervous and skeptical about whether behavioral therapy, specifically, Applied Behavior Analysis (ABA), would be a good choice for Isaac.  I was worried that it would be too rigid and that it would conflict with the more child-led DIR/Floortime approach we were taking.  Melissa and her team proved me wrong.  They are respectful of Isaac, tuned into his personality, strengths and challenges, and are able to bring out his joy in learning.  Then about a month ago at the Jumpstart Conference, I learned that eclectic approaches to therapy are becoming more common.  So I asked Melissa to share her point of view on how to make an integrated ABA and Floortime program work.

Can DIR/Floortime and ABA be integrated?
Definitely. The field of ABA has evolved over the past ten years; there has been a "leftwards" movement toward a more developmental approach.  Ten years ago, most ABA providers were still very traditional. Sessions were largely adult-directed, and it was rare to see teaching sessions conducted using more naturalistic approaches. Natural environment techniques were always included to some degree; however, these tactics often took the back seat to more structured "discrete-trial" learning opportunities. Today we're seeing a movement toward more naturalistic, developmentally appropriate behavioral interventions.  What this means is that instead of ABA sessions being 90 percent adult-directed, sessions are conducted with a more natural back-and-forth flow of adult-led and child-led activities. Instructional activities are more play-based, centering on the unique interests of each child. If you look at the Floortime model, it's maybe 90 percent child-led. In the past, there used to be a real disparity between these approaches; now they are closer together.  So Floortime and ABA can be integrated into a child's overall program, just like speech and occupational therapies. And if Floortime and ABA therapists collaborate within a session, each can pick up some techniques from the other.

So how does this work?
You really do need to have providers who are willing to work together. It's true that there are folks who feel these methods to be mutually exclusive, and they don't need to be. So look for people who are open to collaborating, and who see the other approach as having value to the family.

What do you do when there's a conflict between DIR/Floortime and ABA approach within a session?
Talk about it. That's why it's so important to have team meetings monthly, or for therapists to touch base over the phone when they can't meet in person.

Can you give an example?
Sure. I had a situation where a child was having a challenge mastering a new skill. The Floortime therapist felt that the child needed to be provided with more "wait time" after being given the direction, while our ABA team felt that an "errorless learning" prompting approach was necessary. Historically, ABA has developed a bad rap for making kids prompt dependent. So we had a dialogue about that. I asked the Floortime therapist why she felt the child needed more time to figure it out on his own, and I explained why we felt that we should prompt him--to help him respond correctly, in order for the child to receive lots of positive feedback without practicing the skill incorrectly. When we talked about it, we came to the conclusion that it made sense to give the child extra time on skills that he had already demonstrated independently, but for new skills, we would help him sooner--to reinforce a sense of accomplishment. So both of us learned something through that experience.

Do you have any other advice for parents who are trying an integrated ABA/Floortime approach?
I think that the use of videos--videotaping portions of sessions and being able to share those--are really valuable. Video enables you to see something, pause the tape, and talk about how you might approach a situation differently. This is becoming more and more possible as video becomes more accessible. It isn't that commonplace now, but Dr. Lynn Koegel uses this technique at her clinic in Santa Barbara, and we try to use it whenever possible.  Don't be afraid--ask your therapists for permission to videotape the sessions. Both sides will discover great new ways to reach the child.

If you have a question for Melissa, please leave a comment here or email her directly at: melissa [at] gatewaylg [dot] com.

Free Resources for Families of Kids with Special Needs

I want to pass along a couple of fantastic free resources for families of kids with special needs: Community Alliance for Special Education (CASE) I just learned about CASE, an organization formed to protect the educational rights of children with disabilities. It's a non-profit group based in San Francisco, and they provide a range of services including consultations to families on specific special education issues, representation at IEP meetings, mediations and hearings and training for parents to help them better advocate for their kids. Even if you don't live in the Bay Area or close by, you can get a lot out of their handbook, which you can download by clicking here. Great organization, great information.

Support for Families: Annual Info Fair On Saturday, April 21st, Support for Families will be hosting their annual “Info Fair” at John O’Connell High School in San Francisco. This is a free event for families of children with special needs, the professionals who work with them, and the community at large. The fair will feature a variety of workshops on a range of topics including adaptive sports, toilet training children with special needs, legal rights of public school students with disabilities and food and eating issues for children with autism. Since “Support for Families” is a non-profit organization, they depend largely upon the support of community volunteers. If you or anyone you know has some time available to assist with set up or clean up for this event, please contact Pat Mejia at 415/387-3059. Both organizations are not for profit and run on very tight budgets, so if you are in a position to make a donation, I'm sure they'd appreciate it.

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.

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.)

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.

Personality, or Pathology?

A couple of days ago, I was invited to join the Silicon Valley Moms Blog.  My first post is up today; it discusses my total obsession with personality versus pathology.  On a more random note, I am keenly interested to know what happens when the people at the excellent cheddarvision.tv notice that they've been linked to a blog post on "you-know-what."  I hope they take it with a grain of salt, or possibly annatto?  I would expect so, given that Great Britain is one of the most enlightened spots in the world when it comes to appreciating eccentricity.  One particularly observant reader on the SV Moms blog noticed that the their cheesecam actually counts down to...milliseconds.  Now honestly, if that isn't a classic example of a "special interest," I don't know what is. 

Your call.