The Family Room

New and Improved Web Address

I know I have been in danger of winning the "Worst Web Address on the Internet" award (if indeed there is one, and if there isn't, there should be) so I finally gave in and bought a shiny new one. You can now find us at www.familyroomblog.com. The Typepad address will continue to work, so use whatever strikes your mood. I may even get fancy and play with the design one of these days...

In Which Our Hero Plays His Very First Board Game

Sometimes I am stunned to discover that, without even realizing it, I've set aside certain expectations for Isaac. The other night in the ER, the doctor asked if his throat hurt and without even thinking, I snapped: "He can't tell you." Was I trying to protect him? Save time? Don't ask. In fact, Isaac hasn't yet verbally identified pain; a few nights ago he bumped his mouth hard on the side of the bathtub and, through his tears, wailed, "That was SURPRISING!" But sometimes he'll do something so seemingly ordinary and yet so momentous that my breath catches in my throat, and all the hopes that I'd stuffed inside my inner broom closet come tumbling out into the light. It reminds me of the feeling you get when you enter a warm house on a freezing day: first some tingling, then a little pain, and, finally, the warmth seeping through your body.

I didn't quite believe it when Jesse told me that he'd picked up Isaac at school on Tuesday to find him playing a board game with another little boy. It just didn't register, and Jesse had to repeat it several times. I still didn't quite get it when Jesse came home the other night with this magical box, played four consecutive games with no prompting, and invited me to try. Who's the one with auditory processing problems, you may wonder?

So we tried it today. The game is called Cariboo and it's made by Cranium. Somehow it manages to combine several elements that Isaac loves--balls, doors, shapes and numbers--with fine-motor practice in a turn-taking game. There's even an imaginative aspect for the kids who are ready for it. The downside: certain people can get a little over-focused on opening and closing the doors, but it's a small price to play for such a huge milestone and the opportunity to interact more meaningfully with other children.

Now, like the research scientists we've become, the next step is to determine whether our little miracle is repeatable outside the lab. So off we go to the toy store, this time with a little more bounce.

Sometimes a Cold is Just a Cold

To me, one of the greatest sorrows of this whole "autism spectrum" business is that it can so easily color your perspective on even the simplest things. Back in October, Isaac went through a very difficult behavioral phase. Normally a happy kid, he suddenly started lashing out at us, having tantrums--basically acting like a real pill. We were worried, but not overly so, since even typically developing kids can hit the terrible twos at three, or even later. So we figured we'd grit our teeth and get through it.

Then one night his behavior took a dramatic turn for the worse: he refused to go to bed and instead went into full-scale meltdown, thrashing around on the floor, screaming and crying and hitting everything in sight. This went on for a few terrifying, sleepless nights. We tried to imagine what it could be, with no success. He didn't seem sick, nothing particularly stressful had happened, no big changes in routine. We thought we'd give it another day, then call the doctor. But the main thing running through my mind was "Sudden, dramatic personality change? Not good."

On the third or fourth morning, I scraped myself together and went to meet with two new clients. Luckily, they also happened to be mothers of young children. I let them know that my son was ill and that I might need to answer a call on my cell phone. They asked me what was wrong, and without mentioning anything about Isaac's developmental delays, I told them about the behavior: the screaming at bedtime, the tantrums, and that this morning I noticed he was rubbing his ears quite a bit.

"Ear infection," they chimed. And, when I stared back at them completely dumfounded, one smiled warmly and asked, "Now don't you feel like the worst mother ever?" It was all I could do not to break into grateful sobs then and there.

Long story short: it wasn't some kind of horrible autistic regressive episode, it didn't mean that my sweet boy's personality was gone forever: it was Isaac's very first garden-variety nonautistic universal kid ear infection, and it, and the behavior, cleared up as soon as we started the antibiotics.

***

Yesterday morning we heard the unmistakable barky cough that always signals a trip to the emergency room and a long night ahead. But for some reason I convinced myself that, since it had been two years since Isaac's last croup, this must just be an allergic reaction to all the pollen at the park. Duh. Back to urgent care last night, where they were surprisingly ill-equipped to deal with a frightened preschooler with special needs. The doctor seemed to think that speaking very quickly and loudly while waving her stethoscope around would convince Isaac to let her examine him, but he had other ideas. And I found myself in that familiar, horrible position of having to explain for my child. And I hate that, because it always feels like such a betrayal. And it makes me resent these people who are basically just trying to do their jobs, see as many kids as quickly as they can, but who still seem so completely at a loss around my son. And I can't help but think: if with all their training they can still be so stiff and awkward around a child with special needs, what can we expect from the rest of the world?

Autism Video and Film

Thanks to Jordan for passing this along: Autism Speaks, an organization dedicated to changing the future for all who struggle with autism spectrum disorders, has created a music video of the Five for Fighting song, "World," which features images of children with autism, and their families. It is a truly moving video and was the work of Bill Shea. The band is generously donating $0.49 to Autism Speaks for each time the video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please click here and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

On a similar topic, it seems that we are moving beyond the Rain Man era to a more nuanced (more, not perfect) depiction of life with autism. Here are two that I know of: I actually saw Magnificent Seven (no, not the one with Yul Brynner), on a plane ride back East with my family. I kind of liked it, actually, with several rather significant reservations, not the least of which was how fresh and gorgeous Helena Bonham Carter managed to look despite raising three special needs boys and three typical girls--with no visible source of income. And today I heard about another BBC movie called After Thomas that apparently aired last night. It's going to run again, so you might want to check it out if you haven't seen it. And if you have seen either of these, let us know what you thought.

Notes From "Support For Families" Conference

Yesterday I went to the Support for Families of Children with Disabilities 2007 Information & Resource Conference. It amazes me what this group, which seems to be run on about five dollars and sheer will, can pull off. They ran 14 workshops in two tracks, ranging from "Adaptive Sports" to "Planning for Inclusive Transitions Across School Levels" to "Legal Rights of Public School Students with Disabilities." I chose two subjects that are near and dear to my heart these days: "Food & Eating Issues for Children with Autism" and "Toilet Training Children with Special Needs," the latter of which was run by Melissa Willa of Gateway Learning Group. Both sessions took a behavioral approach, and I could again see how these new ways of conducting ABA can open up whole worlds for children: a new degree of independence, the tolerance for--even interest in--new types of foods. The initial approach in these specific instances may be more adult led, but the consequences ultimately empower the kids to make a broader range of choices for themselves over time. So again that difficult balance between ABA and Floortime, between the child's agenda and the therapist's.

Both sessions reminded me that too often we rush into our kids' programs without really getting enough of the context behind what our providers plan to do. As a result, things that you think of as kind of optional (switching reinforcers, or forgetting to tell your school what you're doing at home) can have an impact and stretch out the learning process. And things that you slowly begin to disagree with (for example, the degree to which your child is pushed in a particular session), can become a real source of tension. So it was helpful to have an opportunity to sit down and start from the very beginning.

I can't possibly do justice to each session, but I do have one suggestion, and it's pretty simple. Even if you do team meetings already, try to find some non-therapy, non-IEP time to talk to your providers individually, even for a few minutes, so you can discuss what's on your mind and start to work it into your child's program. I realized yesterday that I had been worrying about Isaac's somewhat limited food repertoire, but in the chaos of everything else I wasn't even aware of it until I saw this class on the agenda. So now I'll approach his case manager to talk about it, and probably even add it to the IEP. (Tip: you CAN add eating and potty objectives to your child's IEP...I didn't realize that before).

Last thing, since I'm apparently on an advice kick today: take a breath. Not every minute of our lives should be a learning opportunity, or a heroically therapeutic moment. Autism may be a communication disorder, but there's plenty of communication in stillness, and silence, too. (Not to mention the guilty pleasure of sharing a pizza while you watch "Dancing with The Stars" together.)

For a copy of Melissa's presentation on toilet training, click here: Download toilet_training_presentation.pdf

A Little Friday Night Update

Tomorrow, 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. I'll be there and will post on what I learn later this weekend. Stay tuned.

In other completely unrelated news, Isaac now seems to be a big fan of Bollywood music. We had a little dance party at home tonight: just the three of us, plus the incomparable sights and sounds of Chaiya, Chaiya. Lifts your spirits on a drizzly Friday night, after a long and stressful week.

Potty Training, Part Deux

Several months ago, we began the bizarre and weirdly emotional process of potty training our son. We bought pull-ups, we collected whimsical potty books, we got detailed instructions and excel spreadsheets from our ABA team (for data collection) and a plastic bucket (for...). We loaded up on fun DVDs he can watch during potty sessions. He learned the steps quickly: he loved sitting on the potty, loved flushing, loved the ritual of washing and drying his hands, even loved his potty seat, proudly carrying it around the house, but...no luck.

Fast-forward a few months (okay, several months) and we are being politely but firmly encouraged to try this again. Again we have the spreadsheets, the paraphernalia, and on Saturday I went to buy my boy his very first set of big kid underpants. And I have to tell you, I felt a little emotional standing there at the display. Do I get colors? White? Dinosaurs? Superman? (In the interest of protecting whatever shred of privacy is left at this point, I leave that to your imagination, dear reader.)

During his bath that night, he played with a green plastic dolphin, filling it with water and letting the water run out into the tub. Then he looked up at me and said: "The dolphin has to go pee-pee," and emptied it into the tub again, giggling. Yesterday, Jesse came home to a whole potty convention in our house, including one ABA tutor, one case manager, our nanny and, of course, the life of the party himself, who was looking a little grumpy by this point. Then this morning, as soon as he woke up, he demanded to sit on the potty again, where he ate a banana, drank a glass of milk, and happily watched an episode and a half of Harold and the Purple Crayon (delaying my shower and causing a Very Bad Hair Day). And I suddenly realized: the bathroom has become his new office. And I can't help but wonder: how did we do this stuff before there were specialists, and Microsoft Excel, and DVDs and cheese crackers and--honestly--does it really take a village to potty train a child?

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.

Wow

I just got an email from Vicki Forman that I have been tagged with the "Thinking Blogger Award." (Where I live, "tagging" has a very different meaning: some young person recently felt the need to "tag" the front of our newly-painted house with green marking pen.) The Thinking Blogger award was started by Ilker Yodas, who one day decided to recognize the five blogs that make him think. So this feels like a particular honor, given that Vicki is such a powerful and inspiring writer and person, and this blog, really a life project, is so new. So thank you, Vicki. Now to share the love with some other blogs that have inspired me recently:

Ali Edwards, for creating a whole world of autism information, activism, creativity and community on her site;

The Wonder Wheel, a great blog by Jordan Sadler--an amazing speech therapist, an amazing person, and, I am learning, an amazing writer. Read Irvington Index, her hilarious and moving account of a recent visit with her elderly grandparents.

My fellow writers at the Silicon Valley Moms. Check out this thoughtful post by Thida about why The Mommy Wars (stay at home versus working) totally, totally miss the point.

My colleague Shannon at Chez Stoneman, for her thoughtfulness and creativity. I loved her post on her grandmother's collection of Valentine's Day cards: such a great companion piece with Jordan's.

And finally, at the risk of shameless [b]logrolling, Jesse's What I'm Reading, because it keeps me in touch with what he's thinking about when we're not discussing Isaac, or our day at work, or what's still edible in the fridge, or whether we need new brake pads.