After living in three big cities and having family in two others, we don't have a lot of annual holiday traditions. We do the "city holiday stuff" in whatever city we're celebrating in that particular year, we bake cookies, we hang stockings, and we read our Christmas books.
Our beloved Christmas books follow us to wherever we will be for Christmas and we look forward to reading them throughout the holiday season. Here are a few of our favorites:
Olive the Other Reindeer
Polar Express
Snowmen at Night
N is for Navidad
The Nutcracker
The Best Christmas Pagaent Ever
The Legend of the Poinsettia
Our favorite of all, however, is probably Pablo's Christmas, a story about a boy in rural Mexico who has to care for his family while his father travels to the United States in search of work. Pablo has to do many of the chores left by his father's absence, including scary ones like fighting off coyotes from the chicken coop. As Christmas approaches, there is no word from his father and his young sisters fear that a "magical queen" has tricked their father into falling in love with her and staying in the United States. Pablo sets out to make Christmas special for his mom and young sisters, despite their lack of food and money. He cuts a Christmas tree and carves dolls for gifts. On Christmas Eve his father triumphantly returns, bringing the family back needed money and a few gifts as well.
We've talked a lot about that book over the years. Why Pablo's father would leave his family to work in the US. What kind of work Pablo's father likely had to do when he arrived here. Why their own Abuelos made the same decision to travel to the US for work many years ago. How that courageous decision changed our entire family's life for the better.
The boys see men working around the city every day. Men who resemble their abuelo and their papi. They work in the peripheries of the city. These men do construction, they dig ditches, work in the back of restaurants, they spend anxious mornings in Home Depot parking lots, hoping the day will bring work. Their hands are dry and callused and their eyes tired.
Thanks to the story of Pablo's Christmas, the boys look at these men working around them and see Pablo's Papa. They see loving husbands and doting fathers forced to work far away from their families. They wonder if these men miss the food, the language, the predictable customs of their hometowns. They hope that there is a happy homecoming with their families awaiting these men very soon. Perhaps on Christmas Eve.
Tuesday, December 16, 2014
Friday, November 28, 2014
not fit for a family blog notes
(This is about a year old but I forgot to publish it….)
the "f" word
Asher whispered to me on the way to piano last week. My friend at school said "f-u-c-h" is a bad word. First, it drove me insane that it was misspelled and had to correct it. Then I said, "Yes. it is a very bad word. one of the worst." REALLY? said Asher totally shocked. Worse than the S-H-U-T word (shut up).
the finger
Awhile back, Asher came home from school and said a friend (perhaps the same one as above? Who is this kid?) said it was bad to stick out your middle finger to someone. I said, yes it is and don't do it. he asked what it meant. I said it means "go away" in a very mean way. I was proud of my explanation without having to get into more details.
Fast forward a Thursday afternoon that always has us running to catch the bus to UW for Noe's speech therapy. There is a short window of time between when I get the kids from school and when we need to catch the bus. We almost always end up running up a Seattle hill, book bags and therapy bag in tow, in order to catch the bus. That day was no different, except the bus pulled away as we got to the bus stop. I couldn't believe the bus driver wouldn't open the door for us (he had closed it, but hadn't pulled away. I know they can't stop once they pull away) so I flipped him the bird in frustration. Most of my bird flipping was contained to my NYC living days, but once awhile, in an extremely frustrating situation, it makes an appearance. As soon as I did it, I heard Asher shout out, "Yeah, GO AWAY!"
larceny
We were walking University Ave trying to find something for a school project after Noe's therapy appt at UW. I looked down to see Noe was eating a bag of Swedish Fish. I didn't buy him any Swedish Fish. He had taken the five finger discount at one of our stops.
the "f" word
Asher whispered to me on the way to piano last week. My friend at school said "f-u-c-h" is a bad word. First, it drove me insane that it was misspelled and had to correct it. Then I said, "Yes. it is a very bad word. one of the worst." REALLY? said Asher totally shocked. Worse than the S-H-U-T word (shut up).
the finger
Awhile back, Asher came home from school and said a friend (perhaps the same one as above? Who is this kid?) said it was bad to stick out your middle finger to someone. I said, yes it is and don't do it. he asked what it meant. I said it means "go away" in a very mean way. I was proud of my explanation without having to get into more details.
Fast forward a Thursday afternoon that always has us running to catch the bus to UW for Noe's speech therapy. There is a short window of time between when I get the kids from school and when we need to catch the bus. We almost always end up running up a Seattle hill, book bags and therapy bag in tow, in order to catch the bus. That day was no different, except the bus pulled away as we got to the bus stop. I couldn't believe the bus driver wouldn't open the door for us (he had closed it, but hadn't pulled away. I know they can't stop once they pull away) so I flipped him the bird in frustration. Most of my bird flipping was contained to my NYC living days, but once awhile, in an extremely frustrating situation, it makes an appearance. As soon as I did it, I heard Asher shout out, "Yeah, GO AWAY!"
larceny
We were walking University Ave trying to find something for a school project after Noe's therapy appt at UW. I looked down to see Noe was eating a bag of Swedish Fish. I didn't buy him any Swedish Fish. He had taken the five finger discount at one of our stops.
Friday, November 14, 2014
Take 2 Seattle Times Sports Blog
A piece I wrote was recently featured in the Take 2 Seattle Times Sports Blog . It is all about my love/hate relationship with the Seahawks and coming to Seattle amidst NFL football madness. I wasn't in love with what I wrote when I submitted it, but it has received a lot of attention. It was really fun to have my "own editor" and to see my name on a byline.
I'm trying to find more time in my life to write.
Friday, November 7, 2014
Funnies for the Week
Just a couple of funnies from this week that I want to jot down to bribe the kids someday for the sake of posterity:
Asher, age 9
Noe, age 11
Asher: Opening a mini-Three Muskateers bar from his Trick-or-Treat stash, "Why do they call it THREE Muskateers? There is only one piece of candy here!"
Noe's teacher told me that he pulled out a back molar during class this week, walked across the room, and handed her the tooth. Too bad it wasn't Teacher Appreciation week?
Asher told me at dinner one night this week that his friend Ben told him that a girl in the class "liked" him. He told me that after Ben told him, he marched over to her and told her that he was too young to make up with girls. I asked him what exactly making up with girls means? He paused for a couple of moments and said, "I really have no idea."
Noe goes through periods where his OCD is high and this is one of those times. His big thing right now is going through the house constantly turning off lights, shutting doors, etc. I'll be in the kitchen with the dishwasher door and various cabinets open, putting away dishes, and he'll rush in and shut all the doors in a huff, and rush off. Also, when we are using the toilet, Noe will be lurking outside the door and as soon as we start to open the door, he'll rush to it, run over to the toilet, shut the lid, and run out. It feels like I'm in some kind of bizarro skit ala Saturday Night Live.
Asher, age 9
Noe, age 11
Asher: Opening a mini-Three Muskateers bar from his Trick-or-Treat stash, "Why do they call it THREE Muskateers? There is only one piece of candy here!"
Noe's teacher told me that he pulled out a back molar during class this week, walked across the room, and handed her the tooth. Too bad it wasn't Teacher Appreciation week?
Asher told me at dinner one night this week that his friend Ben told him that a girl in the class "liked" him. He told me that after Ben told him, he marched over to her and told her that he was too young to make up with girls. I asked him what exactly making up with girls means? He paused for a couple of moments and said, "I really have no idea."
Noe goes through periods where his OCD is high and this is one of those times. His big thing right now is going through the house constantly turning off lights, shutting doors, etc. I'll be in the kitchen with the dishwasher door and various cabinets open, putting away dishes, and he'll rush in and shut all the doors in a huff, and rush off. Also, when we are using the toilet, Noe will be lurking outside the door and as soon as we start to open the door, he'll rush to it, run over to the toilet, shut the lid, and run out. It feels like I'm in some kind of bizarro skit ala Saturday Night Live.
Friday, October 24, 2014
The Mysterious Case of Billy H
 |
| Billy and Asher. Golden Gardens Park, Seattle WA, Aug 2014 |
The post was an FBI alert from the Seattle Times. Billy had been abducted by his father.
I frantically texted Ed at work, sending him the photos I had taken of him and Asher. We know this kid! We can help him! But, it turns out, we haven't been able to help him much at all.
The weather was spectacular here in Seattle throughout August, our days were mostly free, and the beach was less than two miles from our front door. The boys and I got into a daily rhythm of heading to the beach in the mid-morning, just as the fog was lifting and before the crowds arrived. Billy approached the boys one day to play….and from that time forward they always looked for (and usually found) each other. Billy was usually alone playing on the beach. Only once did I see his dad, a fair distance away on his cell phone. He didn't approach me and I left him alone to talk.
The boys played in the water, built cool stuff in the sand, covered each other up in sand, flew kites…all the standard beach stuff. I tried to ask Billy a few personal questions, but he was not very interested in talking. I figured he was having too much fun playing to want to stop and chat with a boring adult.
He did tell us that he and his dad were sailing along the Pacific Ocean this summer on his dad's boat, which was currently moored next door to Golden Gardens. He said he was from California (perhaps he had lived there previously, but we found out later he lived with his mom in Pennsylvania). And he played Minecraft on the boat. And that was all we knew about Billy, but we were all amazed, and a little jealous, of his grand summer sea adventure!
Did I see some red flags? Of course. Honestly, one of the reasons why I brought the boys to the beach so often was that I didn't want Billy to be alone. I wouldn't personally allow my nine year old to play alone on the beach for hours on end, and I would guess most other parents would not allow that either. And, at the very least, if I was Billy's father, I would definitely want to meet the family who kept him occupied most days. But Billy looked well-cared for, and he played easily and happily with my kids. He could return back to his boat, a very short distance away, at any time.
Also factoring into this whole situation, in my mind, was a slew of news stories of parents being charged criminally for allowing their older children to be in parks, and other public places, unsupervised. Like many others, I felt this was sending a dangerous precedent of interference of parental rights, and further frightening parents out of teaching their children independence, an important life skill. I didn't want to "tattle" on a fellow parent.
And the reality is that Billy's father had broken no laws during the time we had contact with Billy. He still had legal custody of Billy during the month of August. It was not until early September, when he failed to return Billy to his mother in Pennsylvania, that he was charged with kidnapping.
I'm not self-important enough to think that I could have "saved" Billy last summer, but I do have one haunting regret. I wish I would have forced the issue and met his father. Perhaps something in my brain and my senses would have clicked that this was not a good situation for Billy, that he might be in imminent danger. Perhaps I would have tattled. And likely, it would have done no good, but perhaps it would have caused a reaction that would have sent Billy back to his mother before his father's fateful decision to disregard the law.
Immediately after my Facebook discovery, we did our due diligence and contacted the FBI, telling them everything we knew about Billy. Ed enlisted the help of his photo editors at the Times and sent the FBI one of our photos of Billy, which is now being distributed by the FBI in their efforts to find him. I reluctantly told Asher the news about his friend, in hopes that it would spark a memory of Billy revealing where he and his father were headed next on their boat. (Asher doesn't remember, and likely never had that conversation with Billy).
It took a lot of explanation for Asher to understand how a father could "kidnap" his own child. It is a strange concept, for sure. I reassure Asher constantly that even though Billy was taken away, he is not being harmed. I have to reassure myself as well, and hope it is the reality. That Billy is on his grand adventure on the high seas, having the time of his life, and oblivious to the legal fallout of his father's actions back on land.
UPDATE 10/29/2014: Billy was found on the small island of Niue in the South Pacific! His father was arrested and extradited to the US on kidnapping charges. Apparently it took a few days for travel arrangements to be made, so he got to hang out with a local island family. I hope that Billy is having a wonderful reunion with his mom in Pennsylvania and can move on from any trauma he experienced the past few months.
Tuesday, August 26, 2014
August 26, 2014
One week until the first day of school. Hurray! I've been looking longingly at the boys' new backpacks hanging up in their closet every day for the past month.
This morning Asher and I biked down to Green Lake so he could attend soccer camp on the pristine green soccer fields next to the lake. Then I came home and worked remotely while Ed took care of Noe. At noon I picked Asher up from camp by bike and we stopped at the library to collect more books and drop off others before heading home.
We all ate a quick lunch together, and then headed out to Mercer Island to play at the Adventure Playground. This is essentially a forest where kids have access to all kinds of building materials and can build, construct, imagine, and explore. The kids had a great time playing and pounding nails all afternoon! On our way home, we stopped by a home in the Wallingford neighborhood that hosts a year-round 'soccer shoe bank' on their side patio. We found some cleats that don't pinch Asher's feet and I will add his old shoes to the bank next time I am in the neighborhood again.
After a seafood dinner, Ed took the boys for a walk down to the lake while I worked on getting ready for some upcoming Lego robotics classes. I enjoyed the cool breeze coming in through the windows and the rare silence in the house while I worked. There is just a hint of fall in the evening air and we haven't seen any real rain in weeks. Such a beautiful time of year here in the PNW!
Before bed, I worked with Noe on his literacy skills and using his communication device. When I told him we were finished for the evening, he requested to continue working. This doesn't happen very often and he probably just wanted an opportunity to earn more fruit snack rewards, but I'll take it as a win. Now Ed and I are settling down to finish our 'Mad Men' marathon. Just a few more days before the Seahawks officially open their season, so I'll try and enjoy these last couple of evenings together.
#LovingtheSeattleLife
This morning Asher and I biked down to Green Lake so he could attend soccer camp on the pristine green soccer fields next to the lake. Then I came home and worked remotely while Ed took care of Noe. At noon I picked Asher up from camp by bike and we stopped at the library to collect more books and drop off others before heading home.
We all ate a quick lunch together, and then headed out to Mercer Island to play at the Adventure Playground. This is essentially a forest where kids have access to all kinds of building materials and can build, construct, imagine, and explore. The kids had a great time playing and pounding nails all afternoon! On our way home, we stopped by a home in the Wallingford neighborhood that hosts a year-round 'soccer shoe bank' on their side patio. We found some cleats that don't pinch Asher's feet and I will add his old shoes to the bank next time I am in the neighborhood again.
After a seafood dinner, Ed took the boys for a walk down to the lake while I worked on getting ready for some upcoming Lego robotics classes. I enjoyed the cool breeze coming in through the windows and the rare silence in the house while I worked. There is just a hint of fall in the evening air and we haven't seen any real rain in weeks. Such a beautiful time of year here in the PNW!
Before bed, I worked with Noe on his literacy skills and using his communication device. When I told him we were finished for the evening, he requested to continue working. This doesn't happen very often and he probably just wanted an opportunity to earn more fruit snack rewards, but I'll take it as a win. Now Ed and I are settling down to finish our 'Mad Men' marathon. Just a few more days before the Seahawks officially open their season, so I'll try and enjoy these last couple of evenings together.
#LovingtheSeattleLife
Tuesday, August 5, 2014
Giraffes By Asher, Age 9
Asher has been working on completing requirements for his Cub Scout Bear badge this summer. I'm not a fan of the BSA program, so this is something he does on his own, without any push from me. Someday he will understand the politics behind it all, but for now, he enjoys going on adventures with his friends and the refreshments at den meetings. And I do see the appeal…he likely isn't going to get a chance to shoot a BB gun with Ed or myself.
Anyways, one of the many badge requirements was to research and write up a short report on any subject. I decided to repost his report on our family blog because it is such a cute representation of him at age nine: Bright, engaging, full of all kinds ofuseless facts and righteous indignation. And always looking for a laugh. It will be fun to read this a few years from now……
GIRAFFES
Here are some amazing facts about my favorite animal, giraffes.
First, giraffes don't sleep much. You're probably thinking, "oh my gosh giraffes are gonna get sick after staying up till midnight," but they do that because of those mean lions and tigers out in the savanna. As you can see, if they sleep, the tigers are gonna sneak up on them and eat them so some giraffes died because of that. The ones that stayed up till 4 o'clock in the morning survived.* In fact, they still do that at the zoo even though they're safe and far away from the lions and tigers, I hope. This is no excuse to as your parents to stay up and watch TV!
Second, a giraffe's neck is up to 6 feet, 7 inches. THAT IS NOT FAIR! Why can't mother nature create us like that! Long necks, oh yeah! I could get my cereal from the top of the fridge because of that instead of climbing up and getting it. We'd have to make our doors extra tall for our heads to fit in, too. Alright, let's stop talking about that and talk about why giraffes have long necks. That's because they love to eat leaves and where do they come from ? Trees, of course. So they have long necks to reach up and eat the leaves. You probably knew that. It's not like Mother Nature would put our food in the trees to reach.
Third, giraffe's skin is brownish-orangish and white. I like my skin how it is so there's no point in changing it. Their skin is that color because when they're born, they start off white. Then they start changing color to brownish-organish and white. I really don't want to say that a million times. I'm gonna say white instead! And for some reason they're white. I like their color. Do you think they could blend in with nature?
Fourth, many giraffes live in Africa. That's pretty obvious. Above, I said lions and tigers and savanna so you can see they live in Africa. I heard in Africa they have mosquito nets around their beds so they don't get bitten by mosquitos. But that has nothing to do with giraffes.
Fifth, baby giraffes are called calfs. I love baby giraffes. They're so cute. I love them. I kinda talked about them above. Read on.
And finally, giraffes are common hunter targets. I don't like hunters. Why do they have to kill giraffes? Why can't they get lions and tigers instead of giraffes? They use the body as meat, tail hair as fly swatters, and hair for necklaces and bracelets. Why can't thy go to the store and buy them? LOL
I hope you enjoyed this helpful, and crazy report on giraffes :) :) :)
*We talked about natural selection on our last trip to the zoo. I guess he kind-of got it?
Anyways, one of the many badge requirements was to research and write up a short report on any subject. I decided to repost his report on our family blog because it is such a cute representation of him at age nine: Bright, engaging, full of all kinds of
GIRAFFES
Here are some amazing facts about my favorite animal, giraffes.
First, giraffes don't sleep much. You're probably thinking, "oh my gosh giraffes are gonna get sick after staying up till midnight," but they do that because of those mean lions and tigers out in the savanna. As you can see, if they sleep, the tigers are gonna sneak up on them and eat them so some giraffes died because of that. The ones that stayed up till 4 o'clock in the morning survived.* In fact, they still do that at the zoo even though they're safe and far away from the lions and tigers, I hope. This is no excuse to as your parents to stay up and watch TV!
Second, a giraffe's neck is up to 6 feet, 7 inches. THAT IS NOT FAIR! Why can't mother nature create us like that! Long necks, oh yeah! I could get my cereal from the top of the fridge because of that instead of climbing up and getting it. We'd have to make our doors extra tall for our heads to fit in, too. Alright, let's stop talking about that and talk about why giraffes have long necks. That's because they love to eat leaves and where do they come from ? Trees, of course. So they have long necks to reach up and eat the leaves. You probably knew that. It's not like Mother Nature would put our food in the trees to reach.
Third, giraffe's skin is brownish-orangish and white. I like my skin how it is so there's no point in changing it. Their skin is that color because when they're born, they start off white. Then they start changing color to brownish-organish and white. I really don't want to say that a million times. I'm gonna say white instead! And for some reason they're white. I like their color. Do you think they could blend in with nature?
Fourth, many giraffes live in Africa. That's pretty obvious. Above, I said lions and tigers and savanna so you can see they live in Africa. I heard in Africa they have mosquito nets around their beds so they don't get bitten by mosquitos. But that has nothing to do with giraffes.
Fifth, baby giraffes are called calfs. I love baby giraffes. They're so cute. I love them. I kinda talked about them above. Read on.
And finally, giraffes are common hunter targets. I don't like hunters. Why do they have to kill giraffes? Why can't they get lions and tigers instead of giraffes? They use the body as meat, tail hair as fly swatters, and hair for necklaces and bracelets. Why can't thy go to the store and buy them? LOL
I hope you enjoyed this helpful, and crazy report on giraffes :) :) :)
*We talked about natural selection on our last trip to the zoo. I guess he kind-of got it?
Sunday, June 29, 2014
Autism's Second Mourning
A new friend shared this term with me. She is a BCBA and has worked with kids on the autism spectrum. I've pondered our own 'Second Mourning' a lot since she mentioned it offhand while helping me diffuse Noe's very public meltdown. I've decided that if I ever write a book, this will be the title. It will be the anti-miracle autism book.
The First Mourning occurs after the initial autism diagnosis. You immediately realize that your child's path is going to be different. But there is hope! Autism therapies, special diets, brain studies. You read the miracle books. You convince yourself that once you can get your child the proper help, he will come out of this relatively unscathed.
So you devote all of your time, money, and patience to this pursuit. Uproot your family's entire life by finding new jobs and moving to a place with better services and schools and the hope of an insurance mandate. You lure the best therapists to your home ABA program, make sure his IEP goals are carried over at home. You analyze daily data from therapy sessions, laminate PECs and visual schedules at ungodly hours. Even a quick outing to the neighborhood grocery store becomes a targeted learning experience.
While I don't want to belittle the progress Noe has made and the amazing work of his therapists and teachers, I think all can agree that we haven't had the outcome we hoped for nine years after his diagnosis.
And as a result, a dark gloom lingers over our family life. The knowledge that we failed to save Noe from his autism, lurking in every shadow. That maybe if we'd worked harder, spent more money, tried a more unconventional approach to his therapies, we would be looking forward to college prep rather than life skills, varsity sports rather than Special Olympics.
This Second Mourning is keeping expectations high for Noe, maintaining his therapies and constantly looking for ways to increase his skills and quality of life, while trying to preserve our finances, our sanity, our family. Remembering that we have another typically developing son who has spent his summers as a "peer model" at autism socialization camps, and way too many afternoons sitting in appointment rooms. My baby boy, who learned to both walk and read in the waiting room of Noe's speech therapist. Second Mourning means making sure Asher has room to spread his own wings and is not defined by his brother's autism.
Second Mourning is also worrying incessantly about the future. Where will Noe live? What will he do when he ages out of the school system? Will anyone hire him? Who will care for him when we pass away?
This Second Mourning has been long, drawn out, and unpredictably painful. One day I think I've made it to Acceptance, that I've cried my last autism tears, and then something happens… Noe throws a tantrum on the city bus and we have to get off, or he tosses his iPad into his bath, or a stranger comes up and asks if he's a "retard"... that catapults me back into the painful realization of our situation.
I remember the day I transferred the money we had saved in Noe's college fund to Asher. Despite all of our other Noe-related expenses, we stashed away a very small amount each month for this fund. It was our Hope Fund. My voice cracked over the phone as I explained the transfer of funds to the college fund account manager guy. He was sympathetic and helpful, probably assuming that Noe had died. Noe was not dead but we were holding a funeral for our own dreams and anticipating a more realistic future for him. That was a Second Mourning.
Life is complex, nuanced, beautiful and terrible all at a once, and that lurking black shadow is just one layer of our lives. Along with the constant worry is constant joy.
Last night I found Noe snuggled between my bed sheets, hiding from his bedtime. When I had told him earlier to get into his pajamas, he had stripped to his underwear and promptly forgot the second half of the request. Instead of scolding him, I giggled with him under the covers, wrapping my arms around his soft brown skin, tracing his sharp angles and bony contours with my fingers and whispering sillies into his ear. He grabbed for my hand just before he fell asleep.
Before I had children, I recall wondering what it would be like to raise a disabled child. I knew that I would love any child of mine, disabled or not, but my focus was so narrow, and my life experience so limited, that I couldn't completely comprehend how that would come to be. But it is not hard to love Noe. I love Noe because he is. Because he is mine. Because he loves me and needs me.
I see such emotional maturity and compassion in Asher, surely an unintended consequence of his life beside Noe. A life lesson that Ed and I could have never instilled on our own. Noe's teacher told me that Asher comes up to Noe's lunch table every day to say hello to his brother and to give him a hug. I am so proud of him.
Ed and I have not won, but are fighting the autism war together. We are old autism war buddies with stories and battle wounds, true partners, confidantes, and through it all….still madly in love with one another. If I am Noe's advocate in the community and his teacher, Ed is his peaceful beacon. When Ed is home there is a calm in Noe and in our home. One that I have never been able to replicate on my own.
The thing to remember amidst the fear of the Second Mourning: Everything has always worked out. When Noe was first diagnosed and I read about kids on the spectrum, I feared Noe's autism would keep our lives permanently trapped within the walls of our home. Now we are barely home. I couldn't envision preschool, elementary school, moving cross-country before they happened. And Noe has always adapted, and even thrived in new situations in his very own way.
There will always be mourning and there will always be joy….and we will continue to move forward.
The First Mourning occurs after the initial autism diagnosis. You immediately realize that your child's path is going to be different. But there is hope! Autism therapies, special diets, brain studies. You read the miracle books. You convince yourself that once you can get your child the proper help, he will come out of this relatively unscathed.
So you devote all of your time, money, and patience to this pursuit. Uproot your family's entire life by finding new jobs and moving to a place with better services and schools and the hope of an insurance mandate. You lure the best therapists to your home ABA program, make sure his IEP goals are carried over at home. You analyze daily data from therapy sessions, laminate PECs and visual schedules at ungodly hours. Even a quick outing to the neighborhood grocery store becomes a targeted learning experience.
While I don't want to belittle the progress Noe has made and the amazing work of his therapists and teachers, I think all can agree that we haven't had the outcome we hoped for nine years after his diagnosis.
And as a result, a dark gloom lingers over our family life. The knowledge that we failed to save Noe from his autism, lurking in every shadow. That maybe if we'd worked harder, spent more money, tried a more unconventional approach to his therapies, we would be looking forward to college prep rather than life skills, varsity sports rather than Special Olympics.
This Second Mourning is keeping expectations high for Noe, maintaining his therapies and constantly looking for ways to increase his skills and quality of life, while trying to preserve our finances, our sanity, our family. Remembering that we have another typically developing son who has spent his summers as a "peer model" at autism socialization camps, and way too many afternoons sitting in appointment rooms. My baby boy, who learned to both walk and read in the waiting room of Noe's speech therapist. Second Mourning means making sure Asher has room to spread his own wings and is not defined by his brother's autism.
Second Mourning is also worrying incessantly about the future. Where will Noe live? What will he do when he ages out of the school system? Will anyone hire him? Who will care for him when we pass away?
This Second Mourning has been long, drawn out, and unpredictably painful. One day I think I've made it to Acceptance, that I've cried my last autism tears, and then something happens… Noe throws a tantrum on the city bus and we have to get off, or he tosses his iPad into his bath, or a stranger comes up and asks if he's a "retard"... that catapults me back into the painful realization of our situation.
Life is complex, nuanced, beautiful and terrible all at a once, and that lurking black shadow is just one layer of our lives. Along with the constant worry is constant joy.
Last night I found Noe snuggled between my bed sheets, hiding from his bedtime. When I had told him earlier to get into his pajamas, he had stripped to his underwear and promptly forgot the second half of the request. Instead of scolding him, I giggled with him under the covers, wrapping my arms around his soft brown skin, tracing his sharp angles and bony contours with my fingers and whispering sillies into his ear. He grabbed for my hand just before he fell asleep.
Before I had children, I recall wondering what it would be like to raise a disabled child. I knew that I would love any child of mine, disabled or not, but my focus was so narrow, and my life experience so limited, that I couldn't completely comprehend how that would come to be. But it is not hard to love Noe. I love Noe because he is. Because he is mine. Because he loves me and needs me.
I see such emotional maturity and compassion in Asher, surely an unintended consequence of his life beside Noe. A life lesson that Ed and I could have never instilled on our own. Noe's teacher told me that Asher comes up to Noe's lunch table every day to say hello to his brother and to give him a hug. I am so proud of him.
Ed and I have not won, but are fighting the autism war together. We are old autism war buddies with stories and battle wounds, true partners, confidantes, and through it all….still madly in love with one another. If I am Noe's advocate in the community and his teacher, Ed is his peaceful beacon. When Ed is home there is a calm in Noe and in our home. One that I have never been able to replicate on my own.
The thing to remember amidst the fear of the Second Mourning: Everything has always worked out. When Noe was first diagnosed and I read about kids on the spectrum, I feared Noe's autism would keep our lives permanently trapped within the walls of our home. Now we are barely home. I couldn't envision preschool, elementary school, moving cross-country before they happened. And Noe has always adapted, and even thrived in new situations in his very own way.
There will always be mourning and there will always be joy….and we will continue to move forward.
Monday, May 12, 2014
mother's day 2014
Sunday afternoon at Casa Guzman. Ed is working, so it's just me and the kiddos….
Asher: Mom, I have to give you the Mother's Day present I made at school for you.
Me: Ok
Asher: It's in my backpack. Where did you put my backpack? (Looking frantically) Help me find my backpack!
We look for the backpack and I find it….in the closet where it typically lives on non-school days.
Asher: (Dumping all the contents of his backpack on the floor of my living room). Huh? I can't find it! It should be in here! Did you throw it away?
Me: No. Why would I do that?
We look through the backpack and it isn't there.
Me: Did you put it in your coat pocket?
Asher: Maybe. Mom, where is my coat? Where did you put it? Did I leave it at school? (He dumps all of the coats out of the closet and onto the floor trying to find his….)
Meanwhile, Noe has used my distraction to put a barstool on top of the couch and is attempting to climb up on top of it and sit…..
We did a have a lovely evening walk around the neighborhood together. The weather was warm and inviting. My intention was to just walk a few blocks before dinner, but we ended up outside until after bedtime and then ate a quick, late dinner.
I never wanted kids growing up. Sometime after college, but before I met Ed, I warmed up to the idea. Then we vacillated between being a family of four or a family of six. Autism made that decision for us, and four feels perfect. I strive to be a better person for these two - I don't want my actions or behavior to ever disappoint them.
Asher: Mom, I have to give you the Mother's Day present I made at school for you.
Me: Ok
Asher: It's in my backpack. Where did you put my backpack? (Looking frantically) Help me find my backpack!
We look for the backpack and I find it….in the closet where it typically lives on non-school days.
Asher: (Dumping all the contents of his backpack on the floor of my living room). Huh? I can't find it! It should be in here! Did you throw it away?
Me: No. Why would I do that?
We look through the backpack and it isn't there.
Me: Did you put it in your coat pocket?
Asher: Maybe. Mom, where is my coat? Where did you put it? Did I leave it at school? (He dumps all of the coats out of the closet and onto the floor trying to find his….)
Meanwhile, Noe has used my distraction to put a barstool on top of the couch and is attempting to climb up on top of it and sit…..
We did a have a lovely evening walk around the neighborhood together. The weather was warm and inviting. My intention was to just walk a few blocks before dinner, but we ended up outside until after bedtime and then ate a quick, late dinner.
I never wanted kids growing up. Sometime after college, but before I met Ed, I warmed up to the idea. Then we vacillated between being a family of four or a family of six. Autism made that decision for us, and four feels perfect. I strive to be a better person for these two - I don't want my actions or behavior to ever disappoint them.
Saturday, May 10, 2014
confessions
1. I have not one but three top secret chocolate stashes around my house.
2. When walking into my kids' elementary school, I used to wait for people to come up to me and say that I couldn't possibly have kids old enough to attend elementary school. I couldn't figure out why no one ever said that. Until this year. When I realized I look EXACTLY like a mom of elementary school aged kids!
3. Growing up, I notoriously and unapologetically drank milk straight from the carton. But as soon as I moved out and lived on my own with my very own carton of milk, I stopped.
4. When I was in elementary school, I would hide my clarinet behind the shed to go play basketball with the 5th grade boys instead of attend early morning band practice like I was supposed to.
5. My youngest child has a VERY full piggy bank. I don't give him an allowance, but he does make me give him a quarter every time he hears me swear (a dollar for the really bad words).
6. I "borrow" from that piggy bank when I'm short on cash. He is the only one with cash in the house!
7. If someone I just met asks me what my husband does for a living, I sometimes make up a vague mundane job description (i.e. he works downtown, in an office) to avoid a long laborious conversation about the Seahawks.
8. My youngest child spent most of his first few months of life sleeping in his car seat on the floor of the bathroom in our one-bedroom NYC apartment. It was the only quiet place available. I constantly worried that he would end up with a curved spine.
9. I first thought the "small craft center" near our neighborhood lake was an arts and crafts center rather than a boat center.
10. I hated babysitting my younger siblings growing up. I still don't love babysitting other people's kids. On more than one occasion, I put my youngest…then toddler….sister in our rabbit hutch out back so I could play basketball but still keep her alive.
11. I love my husband and I'm grateful for the support we received when we married, but if I had my wedding to do over again it would be much smaller and more intimate.
12. I guesstimate my contact lens prescription and then order my contacts online to avoid seeing an eye doctor. I will pretty much do anything to avoid going to a doctor
13. A couple weeks ago I told my husband that I was going to a PTA meeting. I walked right past the
school to Ben and Jerry's for free cone day.
14. I am HORRIBLE with directions. Living in NYC pre-GPS, I mostly relied on toddler Noe to help me locate the nearest subway station. He had a great knack for finding them.
15. When my DC neighbors did not recycle, it would fill me with homicidal rage. Sometimes I would sort their trash myself in the dark of night. Some I refused to talk to after frequent violations.
2. When walking into my kids' elementary school, I used to wait for people to come up to me and say that I couldn't possibly have kids old enough to attend elementary school. I couldn't figure out why no one ever said that. Until this year. When I realized I look EXACTLY like a mom of elementary school aged kids!
3. Growing up, I notoriously and unapologetically drank milk straight from the carton. But as soon as I moved out and lived on my own with my very own carton of milk, I stopped.
4. When I was in elementary school, I would hide my clarinet behind the shed to go play basketball with the 5th grade boys instead of attend early morning band practice like I was supposed to.
5. My youngest child has a VERY full piggy bank. I don't give him an allowance, but he does make me give him a quarter every time he hears me swear (a dollar for the really bad words).
6. I "borrow" from that piggy bank when I'm short on cash. He is the only one with cash in the house!
7. If someone I just met asks me what my husband does for a living, I sometimes make up a vague mundane job description (i.e. he works downtown, in an office) to avoid a long laborious conversation about the Seahawks.
8. My youngest child spent most of his first few months of life sleeping in his car seat on the floor of the bathroom in our one-bedroom NYC apartment. It was the only quiet place available. I constantly worried that he would end up with a curved spine.
9. I first thought the "small craft center" near our neighborhood lake was an arts and crafts center rather than a boat center.
10. I hated babysitting my younger siblings growing up. I still don't love babysitting other people's kids. On more than one occasion, I put my youngest…then toddler….sister in our rabbit hutch out back so I could play basketball but still keep her alive.
11. I love my husband and I'm grateful for the support we received when we married, but if I had my wedding to do over again it would be much smaller and more intimate.
12. I guesstimate my contact lens prescription and then order my contacts online to avoid seeing an eye doctor. I will pretty much do anything to avoid going to a doctor
13. A couple weeks ago I told my husband that I was going to a PTA meeting. I walked right past the
school to Ben and Jerry's for free cone day.
14. I am HORRIBLE with directions. Living in NYC pre-GPS, I mostly relied on toddler Noe to help me locate the nearest subway station. He had a great knack for finding them.
15. When my DC neighbors did not recycle, it would fill me with homicidal rage. Sometimes I would sort their trash myself in the dark of night. Some I refused to talk to after frequent violations.
Sunday, April 20, 2014
middle school angst part 2
Note: This blog is turning into a series of Asherisms. I'll try and write a real post again soon!
Tonight, before bed, I mentioned to Asher that in a few years, he can have his own room downstairs. (We have a small guest quarters downstairs with a separate entrance. I am nervous for the boys to have their room downstairs because we live in a densely populated neighborhood…. so the boys share a room upstairs next to our bedroom).
I thought he would be excited.
"NO WAY!" he said. "Only teenagers who drink alcohol want their own bedroom away from their parents. I don't want to be the kind of teenager who has to drink alcohol."
Asher thinks it over and then says, "Maybe Noe can move downstairs."
Friday, March 14, 2014
middle school angst
Asher is only in the third grade but already petrified of middle school (thank you 'Diary of a Wimpy Kid' book series).
Today, he heard some rumors swirling at lunch about the neighborhood middle school which sent him into a panic.
Asher: Mom, I heard there are drugs at XXX Middle School. I don't want to go there!
Me: Asher, there are problems at all middle schools. I'm sure everything will be fine.
Asher: Oh. Well... Mom?
Me: Yes?
Asher: What are drugs?
Today, he heard some rumors swirling at lunch about the neighborhood middle school which sent him into a panic.
Asher: Mom, I heard there are drugs at XXX Middle School. I don't want to go there!
Me: Asher, there are problems at all middle schools. I'm sure everything will be fine.
Asher: Oh. Well... Mom?
Me: Yes?
Asher: What are drugs?
Eat Like A Japanese Exchange Student
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| Here is Yumi, mastering the art of the "American S'more." |
I thought I was a pretty healthy eater until Yumi, our adorable and always agreeable Japanese exchange student, came to stay with us.
I don't eat much red meat, I try to load up on fruits and veggies, rarely to never drink soda. We've successfully weaned our family off of fast food, except for rare occasions. I do eat too much sugar, but everyone has their vice, right?
But Yumi uncovered all of my bad eating habits, exposing me as the ugly American eater that I am.
When Yumi first arrived at our house, she always sat down at the table when she ate, never snacked between meals, never asked for seconds. She ate her meals painfully slowly.
I do none of the above.
On her second morning in our house, I was inhaling my breakfast at the kitchen counter while simultaneously packing school lunches and catching up on work email. Yumi came up to me and asked, "Do I eat breakfast here [motioning to the kitchen counter], like you? Is that what is normal for Americans?"
Sigh.
That became a constant question from Yumi to us. "Is that normal for Americans?"
Is that normal for Americans to drive their cars through the restaurant and pick up their food? (translation: use the drive through window)
Is that normal for Americans to go to the cafe (translation: Starbucks or equivalent) every day for coffee and treats?
So much food! Is that normal for Americans?
Yes, we are freakin' fat slobs, ok? And I thought I was better but now I just don't know. Nothing reminds me of this more than when we all sit down together for dinner. Yumi chews her food in this quiet, perfect (almost eerie) rhythm, while the Americans at the table sound like suffocating horses.
Please don't mistake Yumi's "normal American" question as casting judgment upon us. She truly loves American culture and wants to understand it and embrace it with every cell in her 88 pound frame. She stopped eating french fries with a fork. By Week 2 in America, she was asking for seconds at meals. Soon after, she was catching an earlier bus so she could grab a latte before her morning university classes. She has fallen in love with everything American from 'the Gap' to '7-11' (which they have BTW in Japan, but here you can buy yourself a hot dog!) to the 'Cheesecake Factory' to the movie 'Frozen'.
When Yumi discovered the show 'Glee' on our Netflix subscription, it was all over. Every night after dinner, she settles down onto the couch with her electronic translator in hand, ready to take in all of the crazy American antics of the show choir misfits. Watching Glee, for Yumi, is an active rather than passive hobby. She frantically writes down American slang and used her translator to make sense of it. Her face lights up and her body sways when they break out into song. One evening, I made the unfortunate mistake of telling her that Cory Monteith, who plays the character Finn, had passed away the year before. She sat up quickly in disbelief and shock, then quietly said goodnight for the evening. I think she went downstairs to cry.
Tomorrow is Yumi's final day in America. Last night, I went down to her room to ask a question and found her sprawled out on her bed, listening to Lady Gaga on her phone with a Coke in one hand and crunchy American Doritos in the other. The transformation is complete.
I imagine Yumi returning home and her befuddled mother asking her in Japanese, "Is that normal for Japanese exchange students to return back from America as junk-food addicted Gleeks?"
Tuesday, February 18, 2014
What's New in 2014
After an all-around fabulous year for Familia Guzman, 2013 ended really, really badly. We are still dealing with much of the fallout, so I won't go into detail on the blog right now.... or probably ever. But 2014 is looking up again!
This is what we're up to these days.....
Easy Ed just finished his first season as editor-in-charge of Seahawks coverage with a Super Bowl win! And although he did absolutely nothing to contribute to their winning season, he did get to lead and edit a book about the Seahawks season. He also wrote a widely read and highly acclaimed blog post in the midst of 12th Man Fever.
Noe is up and running with his speech device, TouchChat on his iPad mini. It is his "voice" and he is very motivated to communicate with it. He is already requesting non-food items and social reinforcement independently.... such as requesting a break, or asking for help.... which makes me believe this will help him go further with his language than he ever has before. One of his favorite things to say right now is "I want you to LISTEN to me!" We're all ears, Buddy.
How does a 9yo kid in Seattle pass the rainy winter? Playing for his school's Ultimate Frisbee team, of course! Asher is also really enjoying his after-school cartooning class and continues to take piano lessons. He gets up early most mornings to write stories and cartoons which I find bizarre but kind of cool.
Me? I guess my big news is that I started a little small business side hustle teaching Lego robotics enrichment classes at local elementary schools. I am starting small with two classes, but am already receiving bookings for spring classes. I'm not giving up my day job anytime soon, but running a tiny business has been fun! Oh -- and I'm training for another half marathon in May. Some people impulsively buy shoes online....I impulsively sign up for races, forgetting the time commitment and the fact that I have the feet and knees of a woman twice my age!
Happy 2014!
This is what we're up to these days.....
Easy Ed just finished his first season as editor-in-charge of Seahawks coverage with a Super Bowl win! And although he did absolutely nothing to contribute to their winning season, he did get to lead and edit a book about the Seahawks season. He also wrote a widely read and highly acclaimed blog post in the midst of 12th Man Fever.
Noe is up and running with his speech device, TouchChat on his iPad mini. It is his "voice" and he is very motivated to communicate with it. He is already requesting non-food items and social reinforcement independently.... such as requesting a break, or asking for help.... which makes me believe this will help him go further with his language than he ever has before. One of his favorite things to say right now is "I want you to LISTEN to me!" We're all ears, Buddy.
How does a 9yo kid in Seattle pass the rainy winter? Playing for his school's Ultimate Frisbee team, of course! Asher is also really enjoying his after-school cartooning class and continues to take piano lessons. He gets up early most mornings to write stories and cartoons which I find bizarre but kind of cool.
Me? I guess my big news is that I started a little small business side hustle teaching Lego robotics enrichment classes at local elementary schools. I am starting small with two classes, but am already receiving bookings for spring classes. I'm not giving up my day job anytime soon, but running a tiny business has been fun! Oh -- and I'm training for another half marathon in May. Some people impulsively buy shoes online....I impulsively sign up for races, forgetting the time commitment and the fact that I have the feet and knees of a woman twice my age!
Happy 2014!
Thursday, January 23, 2014
Noe at 11
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| Noe in his classroom being goofy, last day before winter break! |
Noe had a good birthday. It was the first time he's had a party with other kids, even if they were his cousins. And, honestly, he was ready to enjoy it. I think doing it earlier with kids he knew less well would have stressed him out.
We were down in Portland, visiting my mom for Christmas, so we took everyone swimming at the nearby community center pool. This pool has a great set-up.... a lazy river, a big slide, and a wading area for younger kids. Luckily, some of my brothers and sisters helped me keep track of the kiddos and everyone had fun. Because some of the cousins were under-sized, I think I went down the slide at least 30 times in the 90 minutes we were at the pool. Noe went down independently and did a great job all around (only one whistle violation for standing on the wall!)
After swimming, we went back to my mom's for pizza and root beer floats. Noe was in heaven. He was so excited to blow his candles out of the pizza and after a long pause, blew them out with a big grin! I even got him to sit down and open some of his presents. He received a red scooter from grandma, and had a great time riding it for the rest of winter break.
I was teary-eyed through out the day. I am so thankful he is happy and thriving at his own pace. I am so thankful that my family loves and supports him, always finding ways to make him feel special and included. Despite our ups and downs with Noe, we have much to be grateful for!
Five Myths of Sports Journalism
The Seahawks are in the Super Bowl and suddenly Ed is the most popular guy in our neighborhood! I feel like I am constantly running interference about what exactly he does for a living and how great ... and not so great... it is to work in sports. As the long-suffering spouse of a sports journalist, I feel like I have my own unique perspective on the myths surrounding his chosen career.
Myth #1. You must make a lot of money/make no money. People assume one or the other, but in reality it is neither. We are in the middle like most the rest of you folks. Unless you are a popular columnist working for a national paper (lots o money), or working at a small town paper, or not yet established in the industry (no money), your salary is probably pretty average.
I think one negative way that journalism impacts family income is that the journalist in the family has such an unpredictable, non-traditional schedule that it puts a lot of pressure on the other spouse to be a consistent figure in the marriage and in the lives of their kids. For me, this has meant only taking flexible and family-friendly employment opportunities and dabbling between part-time and full-time work, which I absolutely do not regret but has hurt my earning potential.
We aren't complaining. We live very comfortably and Ed loves his work. When your dear father-in-law has hauled garbage for a living for the past 30 years (we're really encouraging him to retire soon!), a middle class salary and a cushy work desk to call your own are all pretty fantastic.
Myth #2. You must get tons of comp tickets to sporting events..... I wish! There is a huge conflict of interest when sports teams start doling out free tickets to media outlets, who are obligated to cover teams in an unbiased and professional manner. So it doesn't happen (often). I have gone to events with Ed, such as the 2001 Rose Bowl, but usually only last minute when another reporter doesn't show and there is an unclaimed press pass. But then I get "shushed" by Ed when I say something because he is trying to focus on covering the game, but it is boring to just watch in silence, so then I go and make small talk with the free food tables, and when the game is over I am ready to go but Ed still has to actually write and file a gamer, so I wait...and it is just not the best live sporting experience.
When we attend events as a family, I am always trying to get Ed to flash his work badge at the entrance so we can get in free, but he is way more ethical than me, and won't ever do it.
Myth #3. You must sit around and watch sports all day at the office. Well, this is partly true. There is downtime during games when there isn't much to do but watch and wait for the outcome. But when it's over and reporters begin filing their stories, it is GAME ON! There is a lot of pressure on deadline. Not life-or-death-I-am-a-surgeon-and-have-a-human-heart-in-my-hand kind of pressure, but the newspaper has always come out and no one wants to be the one to end that streak. Or have their headline show up on some journalism blog because they left out the 'l' in public.... you get the idea.
Myth #4. You must love the home team and always root hard for them. Ummm... No! More
wins equals longer hours and more work. I can confidently say that journalism spouses root against the home team in almost all instances. Reporters and editors? It is more complicated because it can be fun to ride the wave of a popular and winning team. At this point of the Seahawks season, I would love to see the Hawks win the Super Bowl (before last week I wanted them to lose! I know...I'm awful!). Ed will be working long hours regardless of the outcome and a win will bring more notoriety and money to the newspaper. And Ed will get to publish a book he has been working on since August! The book is contingent on a Seahawks Super Bowl victory. He will finish it the night of the Super Bowl and send it off for publishing early the next morning. It will be on store shelves by the Wednesday following the Super Bowl. #shamelessplug
Myth #5. Newspapers are dying; better get an Internet job. Well, it depends on the specific newspaper or website you are referencing. A truer general statement would read that newspapers have been unforgivably slow to embrace Internet technology and many have not or will not survive. Web journalism has also struggled to find a profitable business model despite delivering content in technologically savvy ways. Since Ed has his heart set on staying in journalism, our strategy has always been to find jobs at media outlets with strong financials who are looking (and moving towards) the future of the industry. This is where my MBA has come in handy, and it hasn't let us down (yet). We've had just about as many friends laid off from Internet companies as we have from traditional newspapers, so I am unsure where one would find the most job stability. My opinion is that in a few years, the remaining newspapers and sports internet sites won't look much different from each other in content or delivery of content.
I sadly admit that I don't follow sports nearly as closely as I did when I was younger. I still love my Blazers and love to catch a good college basketball game (both men and women). We usually make it out to a pro baseball game or two each summer and I'm starting to follow soccer a little more closely. But mostly, it isn't a huge part of our private life. Part of that is just the busyness of a life filled with kids and work and friends. But we also purposefully close ourselves off from it all. For example, we have been living in Seattle for nine months and still haven't bothered to buy a television set. Ed needs to take a breath. And honestly, sometimes I resent it. The time it steals from our family and our relationship. The unorthodox schedule which has claimed our weekends, date nights, and evenings spent together eating dinner and doing homework with the kids.
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