“THE STATE OF THINGS” North Carolina Public Radio station WUNC

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

From the fires in San Diego

Tuesday morning:    Here in San Diego, life continues to be surreal. We’re hunkered down in my niece’s tiny one bedroom apartment as parts of the county continue to burn. We are the lucky ones. We sit in comfort, eating chocolate, eyes glued to the TV, each with our own laptop, communicating to people on the other side of town. Our house is still intact, and we have a place to stay out of the danger zone. On the TV, we see homes burning. We don’t really want to watch this destruction, but on the bottom of the screen they are scrolling the names of the neighborhoods that people are allowed to return to, and we hope to see ours listed. It isn’t, although they are allowing people in a couple of miles away. We discuss whether or not we should head back to our home anyway.

My husband wants to go. I don’t, I figure there is a reason they have not released our neighborhood. We live in Carmel Valley, and with the Santa Ana winds our little valley can become a wind tunnel channeling the fire right to the ocean, which is why they evacuated us in the first place. Besides, when I was growing up in Ohio I lived through too many tornados to feel the danger is over. No matter what the prognosis, mankind still has no control over wind patterns, as far as I know.

Outside my niece’s apartment the sky is orange and ashes are falling and it smells like a forest on fire. Not surprising. We have lots of free time to go walking, but it’s not a good idea to breathe in air that you can see. Meanwhile on the tube, they announce that schools will be closed all week in all school districts in the county. Rebecca, my daughter who is a high school sophomore, is thrilled. She is less thrilled when she finds out that the concert we have tickets to go to tomorrow night at the House of Blues is also cancelled. We were supposed to see Boys Like Girls, All Time Low and The Audition. This is the third time Rebecca attempts to see The Audition with no success, at this point she thinks this fire is part of a conspiracy. My 18 year old son with autism is happy enough, he’s got his favorite book and his ribbon. When asked how he is doing he spells out on his letter board “GREAT I’M WITH FAMILY. I’M HAPPY WE ARE HERE.”

I am still worried about friends I have not been able to reach in some areas I am seeing highlighted bright red fire zones on the TV. A conference on self-employment for developmental disabilities that my son and I were supposed to speak at in a suburb of San Diego on Thursday has been cancelled. Meanwhile I am getting emails from people in other parts of the world asking for answers on projects I am working on and expecting me to meet certain writing deadlines. This makes me realize how although we San Diegans may feel like our lives are on hold, and we are consumed with thoughts about essentials such as food and shelter, to the rest of the world, it is life as usual and the fires are just another item on the evening news. And really, when you think about the fact that 2.5 million people have been driven from their homes in Darfur, Sudan and that millions of others face murder, rape, torture, malnutrition, and disease over there, my little situation here doesn’t seem so bad.

Tuesday afternoon: Back on the tube, Gov. Arnold Schwarzenegger is on screen along with both Homeland Security Secretary Michael Chertoff and FEMA Administrator David Paulison. President Bush has sent them to get a first-hand view of the disaster. To be honest, I don’t feel comforted by their presence. Those of us watching can only hope the federal government has learned something since Hurricane Katrina. Arnold tells us how great the San Diego locals are being to their neighbors, pulling together to help each other and how the evacuation centers are overwhelmed with volunteers and needed supplies. It is true that San Diegans are a very neighborly population, one of the reasons I like it here. In my 11 years of living here with a severely autistic child with weird behaviors, I have seen only kindness from strangers when we are out in public. Not so in other places.

Gov. Schwarzenegger tells us he has asked President Bush to declare a federal emergency for seven CA counties to speed disaster-relief efforts. This is good news. He tells us President Bush is coming on Thursday. I’m not quite sure I understand why. Perhaps he is going to open up some of the extra bedrooms in the White House to those who have been forced to evacuate and have lost their homes, and he is going to interview some appropriate locals to be prospective roommates. When Gov. Schwarzenegger and company are done speaking, the local newscaster jokes that Arnold must have bought a home here, he and President Bush seem so involved and touched with what is going on down here. I have a feeling it is really because San Diego County is a Republican stronghold. Call me cynical. I might add that much of the homes we see burning are in neighborhoods a bit different from the parishes devastated in New Orleans and most of them are owned by whites. I am not saying that this makes their devastation any easier – losing your home sucks no matter whether it is a shack or a mansion and irregardless of the color of your skin – but I don’t get the feeling that Bush and company are down with the brown.

Meanwhile we have to leave the house for a provision run to the 99 cent store down the street. We are running out of toilet paper. Some things you just can’t do without unless it is a matter of life or death, or you are unlucky enough to be homeless in Sudan. Since we have ventured beyond the front door, we decide to brave the haze and head for the local pier. The sun looks bright red and very eerie through the smoke and our sinuses are starting to act up. Looking down into the ocean off the pier, we see the surfers are out in full force. Surfers are a dedicated bunch and it feels great to see a bit of every day normalcy after all the images of doom and gloom on the TV and internet. It is nice to see so much water after feeling so much dryness.

Tuesday evening: When we get back to my niece’s apartment, I check my email. I’m still trying to find out what happened to a few local friends I can’t seem to reach. One of them has emailed me and she is safe with friends in Hillcrest, another San Diego neighborhood closer to the center of town. I read some emails from friends and family around the world who have come to realize that this is not just the usual California brushfire. Like Arnold, I am overwhelmed by the kindness. In particular, one seminar organizer who sends me around the country to speak on autism has offered to put my family up at a hotel, and when told none are available in San Diego, finds and reserves one in Orange County, about an hour and fifteen minutes away from here. It feels amazingly good to feel so much support, yet we are hesitant to leave in case the winds change and head for our neighbors and home. Right now, we are still the lucky ones. And in reality, we would have to cross other evacuation zones and fires and we would rather deal with the devastation in our own town than in someone else’s. But we are touched and grateful for the offered gift of privacy and a swimming pool.

People in the autism community are well aware of how a disaster such as this can create particular havoc for a child with autism because most of them cannot tolerate a change in their routine or a change in their environment. We are lucky because as long as Jeremy is with us and has his book or his favorite piece of ribbon, he is OK. No meltdowns here. In other emails I see that some autism organizations in the Southern California area are already looking to see what they can do to mobilize help for those whose kids with autism are not as easy going as Jeremy. Since the schools and day programs are closed and their routine has been disrupted, many of these kid are wigging out. Add to that the fact that many of them are now living in a relatives’s or a friend’s living room and they don’t have their stuff around them, and you can understand how painful this is for them and their families. Another concern is for those who are on special diets and can’t get access to the kinds of foods their systems can tolerate.

We sit back and watch Queer Eye for the Straight Guy, the perfect show to relax to. Visions of the Fab 5 redoing our house when we can move back in or if we need to rebuild are dancing in my head. I love these guys. One of them has a parent in Rancho Santa Fe, where the fires have headed instead of our neighborhood. I hope she is OK and her house is still standing.

My brother the cameraman calls, he has just landed at LAX. He is heading out with his camera and his soundman to shoot some footage in San Bernardino before coming down to San Diego. I tell him to be careful, not to get too close to anything burning. But that’s why he’s here, Good Morning America viewers want to see and feel up close what we are going through. I hope I will get the chance to see him while he is out here.

Wednesday early morning: It’s 5:30 here in San Diego, I wake up and it still smells like everything is burning, even worse than yesterday. My eyes are stinging, my sinuses are protesting. Soot is everywhere and I’m still inside the house. That hotel room in Orange County is looking pretty tempting right now. News on the internet tells me wireless service has been provided to those evacuated to Qualcomm Stadium and laptops have been donated to evacuees there. This is definitely not a Hurricane Katrina -style stadium evacuation going on here. Final numbers for yesterday’s devastation are at 500,000 people evacuated from their homes and 1300 houses burned to the ground. My neighborhood is still not listed as a place we are allowed to go back to, but I’m hoping there will be another update later today. Still, I feel lucky. My family is here, we are all alive and safe, we have family to stay with and our house is still up. Life is good. What more could I possibly want?

This post first appeared on the HuffingtonPost.com, October 23, 2007

What to pack

Sunday – It is amazing how little you care about stuff when you have flames licking at your heels. I flew back from a speaking engagement in New York on Sunday night and from the airplane, I could see three little fires out in the wilderness. Leaving the airport and driving to my home in Carmel Valley, the most northern tip of the city of San Diego, I felt like I had jumped out of the frying pan and into the fire. The closer I got to my neighborhood, the thicker the air. The fierce Santa Ana winds were blowing ashes all around. In the house, even with all the windows closed, there was a fine layer of soot on everything and the smell of campfire permeated our house. With hindsight it seems silly, but Sunday night we still went to bed thinking life would go on as usual.

Monday – When I woke up Monday morning and turned on the news, reality hit. This was not just going to go away. The three little fires had grown and split into larger fires, creating a virtual line of fires going north and south, east of the Interstate 15. The Santa Ana winds were blowing strong, and on the news we were told that they could not get the usual fire fighting aircraft up in the air because of the wind and smoke.

I sneaked into my daughter’s bedroom and turned off our alarm clock. There would be no school Monday. A few hours later we were told that our area was designated a ‘mandatory evacuation’ area. We were told to get out ASAP, while we could. This all felt very surreal. We are four miles from the ocean. How could brush fire come this close?

I contemplated driving up to my mom’s house in Pasadena, 100 miles to the northeast from here to stay for a few days. Ironically, she has been preparing to move out of her house to an assisted living facility a mile from my San Diego house so she could be near us. However, driving north meant driving through other areas that were being evacuated and I didn’t want to be toast on the freeway.

Time to pack. The first thought in my mind when I realized the house could burn down, was an enormous sense of relief at the thought of not having to get caught up on my filing, or cleaning out the closets or emptying the garage. The idea of a fresh start was appealing. After a few minutes of daydreaming, I realized I had to make some decisions, we had to leave. Interesting what different people want to take when it gets down to the wire.

My 15-year-old daughter, Rebecca, was instructed to pack three days worth of clothes, and whatever items she could not live without. Rebecca packed her stuffed bunny that she has had since the day she was born and is literally falling to bits although I’ve given it a new skin many times. She also took the ticket stubs to all the rock concerts she has ever been to, her computer, her cell phone, her new video iPod, one of her tennis trophies and last year’s freshman yearbook. She also took tickets to a rock concert she and I are supposed to attend at the House of Blues on Wednesday. She did not think to pack her contacts, her retainer or her school books.

My son, Jeremy, who is 18 and severely impacted by autism, needed help to get packed. He was standing in the hallway, rocking back and forth and flicking a piece of ribbon. This is his favorite self-stimulatory activity when he is stressed. Some of us drink vodka and smoke.

I asked him with his letter board what he wanted to take with him, besides his dog, Handsome. He spells out “U R NICE TO FIND MY BOOK” He wants his favorite book, an artsy black and white photography book on the metro in Paris. He was born in Paris and riding the metro in Paris is one of his favorite things to do. ‘Got it!,” Rebecca shouted down the stairs. “What else, Jeremy? You may not see or feel your things again. What can’t you live without?” I ask. “MY MUSIC, DAVE MATTHEWS’ Jeremy spelled. “I got him on my iPod, is that OK?,” “YES.”

I packed my jewelry, sentimental pieces that have not much monetary value but come from old friends and family since passed away, gifts from my husband, sisters and girlfriends. I took my favorite photo of my son and daughter — their first Halloween in California. Jeremy (seven at the time) is wearing turquoise Chinese pajamas. Rebecca is dressed as a witch. They are so cute , smiling and standing in front of the rental we lived in, before we bought the house we are now evacuating. I took pre-digital photos off the wall, photos of friends and relatives. We have paintings hanging on all our walls, a lifetime of collecting from flea markets around the world, but I didn’t give them a second thought. I took the two pieces of art nearest and dearest to my heart: my daughter’s fifth grade self-portrait that won a ribbon at the local San Diego County Fair, and a multi-media self- portrait my autistic son made with an art college student. I grabbed a few days worth of comfortable clothes and for some reason my leather jacket. I had not realized until then the importance of that jacket — it has been everywhere with me, a witness to my adventures in different places. I took my computer, and saved online once again the manuscript I am currently working on. Can’t be too careful.

My husband packed some clothes, a computer, flashlights, cat and dog food, our Very Important Papers which are always in a metal fire proof box. He packed water, food, the kids favorite snacks. I packed 2 cans of fois gras — souvenirs of a trip to France — a couple of good bottles of wine, and a bottle of champagne. Why let it all go to waste? We might as well enjoy one good meal before we get really depressed.

All the neighbors are out on the street packing up their cars. We hug and exchange cell phone numbers and the surreal became reality. We are taking our two cars, so we split up the teens, the 2 cats and the dog. We head to Imperial Beach, about 25 miles south where a niece and her husband have just moved into a tiny one bedroom apartment. When they first arrived to San Diego a month ago, they stayed with us till they found their new home. I never thought that one day, I would need to ask them to repay the favor.

Tuesday – Tuesday morning, everyone is asleep in the tiny living room. I check on the internet, looks like our house is still standing. There is little relief in knowing that, because if your house did not burn down, it just means someone else’s did, possibly someone you know. The fires haven’t stopped, they are still moving towards the coast. I get a call form my sister in New York, she tells me my brother, a cameraman based in Philly, is flying out to cover the story for Good Morning America. My brother has covered many natural disasters in the U.S., including Hurricane Katrina, other floods and fires. This time it will probably seem a bit more personal.

This blog first appeared on the Huffingtonpost.com on October 23, 2007

Back home after the fires

Wednesday morning – Everyone is still asleep in this tiny room in Imperial Beach where we have evacuated from our home in San Diego, but I want to know what is going on. I turn on the TV without the sound and see the same images of fire and brimstone on the screen but there is a noticeable difference though I can’t put my finger on it right away. Then I realize what it is. No wind! This is great. I am fixated on the scrolling words on the bottom of the screen until I see what I’ve been waiting for. ‘Residents may return to these previously evacuated areas: … Carmel Valley…Yes! We can go home! A little while later I call my friend Veronique who never left her house and I hear a strange noise in the background. “Oh my God,” she says “Planes! I hear planes!” This is extraordinarily good news because it means the wind has really died down at least in our area and they can get planes up to fight the fire burning east of us and hopefully everywhere else.

My husband is still thinking I should take up the generous offer of the hotel room in Orange County as the air quality is pretty bad, and take the kids and the dog up there. We find out the Interstate 5 is blocked because of fires in Camp Pendelton, so for now it is not even an option, and I decide to make a decision once we are back in our neighborhood. We pack up the car, and head north. We stop in downtown San Diego to drop off my 18 year old autistic son, Jeremy, at Dana’s place. Dana is one of his Afternoon Angels, college students who help me teach and take care of Jeremy as he requires 24 hour support. She hasn’t left town and Jeremy and Handsome (his dog) are going to hang around with her while we assess the situation back home. It is extremely difficult to get anything done and keep an eye on Jeremy at the same time and I know we are going to have a lot of clean up to do. I wouldn’t be able to keep him occupied and out of the soot. I hope Dana is going to be around the rest the week, because the rest of the Afternoon Angels have flown the coop and gone home to LA, and although he did well for a few days, he is going to start wigging out if this goes on for too long. My fifteen year old, Rebecca is on her cell phone, checking to see who is going back to our neighborhood that she can hang with when we get home. She is still thinking of this whole experience as a week’s worth of snow days. Wait till she realizes how much clean up we are going to all have to do.

Wednesday afternoon
– As we get off the freeway and head down the street near our house, it is still pretty calm and quiet here, not everyone is back. Tree branches and leaves are scattered everywhere, some trees have been uprooted by the wind. There is a gardener mowing the grass along the sidewalks and it looks like he is just spewing brown ash into the air. We park in front of our house and see piles of soot and leaves along the door and garage, the winds have blown it all up against the house. Inside, everything is covered in a fine layer of soot that has blown in through the cracks.

We unpack our car, but leave everything near the door, because we know that the winds could pick up and the fire could still change directions and head back this way. I check the landline voice mail and call family to tell them we are back home. I try to call Jeremy’s instructional school aide, Maureen, one more time without success. I am concerned about her, as when I spoke to her last, she was evacuating and she could see the flames a half a mile form her house. I wonder if her home was spared.

I call my mom in Pasadena, now that I am home, she wants to know when I am coming up to see her. I explain I have to clean everything up and the roads are still not clear heading north on the Interstate 5. The irony in all this is that we are in the middle of moving her down here, a mile from my house to an assisted living home. She has just lost her husband of 56 years, my father, and she requires 24 hour care due to Parkinson’s. Good thing we hadn’t completed the move or she would have been evacuated as well. I’m not sure I could have cared for her as well as my son through all of this, and I wonder how long now till I can move her down close to me with all that is going on.

We start cleaning the soot in the bathrooms and the kitchen; it has gotten into everything and it smells like damp soot, like a store having a fire sale. We keep the windows closed and put the air conditioning fan on to clean the air. We strip the beds and wash the sheets, everything is covered in ash. I feel so lucky to be alive and back in my home. I’m not sure if I will have help with Jeremy over the next few days, so I decide to take advantage of the fact he is not with me to see a girlfriend. My friend Veronique picks me up and we head to the beach. As we walk and play catch up with our stories we can finally breathe some semi-fresh air. I keep feeling how lucky I am. We stop at the Poseidon, my local Cheers which is right on the beach, and have a drink at the bar. Everyone is commiserating and telling evacuation stories. We are the lucky ones. Each of these moments feels like a gift, to be treasured and savored. I feel guilty that my home is still intact when others have lost everything.

Once back home, my brother the cameraman calls. He and his soundman have had no sleep, they have been covering the fires in Lake Arrowhead and have been covering the fires all night for Good Morning America. He is now headed to Rancho Bernardo and wants an update on the roads as he doesn’t want to get stuck, he is going to crash at a hotel in Rancho as that where he has to be ready to roll the next day. We hope we will get to see each other within the next day or so. Funny enough, he was planning to come out this week to help move my mom down here, instead he is now covering the fires.

Thursday morning – I wake up in my own bed, feeling luxurious. I make my favorite coffee and drink it out of my favorite coffee cup (the blue one with the chipped saucer I have had since my Paris days) which I thought I might never drink out of again. Life is great. The house is quiet, the kids are still asleep. I turn on the TV, the Santa Ana winds have settled down, the fires aren’t as bad , and there are none left in the city of San Diego. It is now over in the east and to the north. For many the fire and its aftermath will not be over for years to come. There have been ten deaths, thousands upon thousands of acres burned and at least 1500 homes gone.

I know we will have to deal with drought, and get this mess in and out of the house cleaned up and that soon I will have to deal with the reality of my life that was interrupted before the fires. I need to go visit my mom and help her prepare for a move, I need to work with Jeremy’s school to make sure they are getting back on track (new school placement) and find out which Afternoon Angels are still around to help out with Jeremy so I can get what needs doing, done. I need to make sure Rebecca gets caught up in her school work. Oh yeah- and I need to finish my manuscript due soon. But right now, I am enjoying the feeling of luxury of being in my own home, I am feeling on top of the world. My family and I are so lucky, we are alive, we still have a home. Our neighbors are OK. It doesn’t get any better than this.

This first appeared on the Huffingtonpost.com  October 25, 2007