Comfort Zone – SOL 7/22/14

I am writing this SOL (a little late) about how my son reacts to summer vacation. In his own words, he has wished that school could be in session all year round. Now, he certainly loves school, but the reason for never wanting it to end is because of his extreme dislike for the lack of structure that comes with summer. While, we enroll him in camps that he really enjoys and try to structure things as much as a family with three children with only one parent at home in the summer can, he stills struggles with summer’s….. summer-ness: the lack of a time to get up and go to; a less structured atmosphere (that most children I know long for all school year long).

And then we add the summer vacation to a foreign land. In this case, the state of Texas and the city of San Antonio where I have relatives and where no one else in my family has visited.

A positive – he loves learning new things and is excited to add Texas to the list of states he has visited.

A negative – during the plane ride and family visit times he is “bored” and plays extra video games.

A plus – adults (my family) tend to love meeting someone so smart and friendly.

A down-side – when his Asperger’s acts up, do I explain it to these “new” people??

An up-side – we get to experience new things and expand his background knowledge.

A detractor – we eat at odd times and are not always in a place convenient to “resting,” which adds to his “unexpected” behaviors.

A pro – we are very active, which helps him sleep in longer (which never happens past 6:30 a.m.).

A con – his schedule being off makes him react more powerfully to things like bugs (hates them), foods (no PBJ here), and jokes (he thinks others are making fun of him).

I hope that the positives, for him, outweigh the negatives, and that with the passing of time he will look back on this trip, this summer, fondly. I hope a little more that I’m not being selfish in wanting him to live in my world, meet my family, and do the things that I want to do. I guess time will tell.

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Using technology to foster social connections – SOL 7/15/14

I had the opportunity to teach a day-long professional development workshop today on high-functioning autism and literacy skills – something upon which I present once or twice a year. One of the sections within the presentation covers technology and how, especially in this population of students, it can foster literacy skills. I recommend using technology to facilitate conversations between teacher and student or between peers, so that the student can show what he or she knows about a text or topic, without the stress and anxiety of coming up with an answer “on the spot.” Online, outside of class, the student can gather his or her thoughts, can review and reflect (rehearse, if you will) what he or she wants to say, and interact with peers in a positive way or ask questions of the teacher without interrupting the flow of class. Technology platforms such as Kidblog.org, or Edmodo, among many others, can facilitate such “conversations.”

I learned of these ideas through reading research and also from Nora Raleigh Baskin’s book, Anything But Typical, which describes a teenage boy who struggles socially, in person, but lives a rich writing life online. Additionally, I had a former student who wrote stories about video game characters in an online forum. He was a very creative and a well received author in this venue.

Today, I also received personal confirmation of the effectiveness of online writing to support social skills thanks to my son. He has an email account through school. One of his classmates sent him an email last week, asking how his summer was going and if he had seen anyone from their class over the summer. This short email allowed my son to practice his “theory of mind” skills in writing back questions to ask his peer, regarding how his summer was going (thinking of another point of view). He was also able to “volley” in the conversation by answering the questions that he had been asked – offering his friend relevant information. Finally, he was able to talk about something that interested him in a socially acceptable way – short and to the point.

I am very thankful that technology can foster these necessary skills. While we won’t be running off to enroll him in cyber school, using this technology effectively in this capacity, is helping to support his having (and keeping) friends and experiencing positive social interactions.

Teachers Write 7/8/14 – Tuesday Quick-Write

I came rushing in through the door. It was March, cold, but it wasn’t the weather that had me rushed. I had received a phone call the day before.

“Are you headed home soon?” asked Mom.

“Why? Is everything ok?” I responded.

“I just think you might want to get here sooner than later,” she said, pleading in her voice.

 

He was sitting in his chair, smiling and happy to see me, but unable to talk. My attention was only on him – the rest of the family in the room could wait. I hugged him and made a joke. “Couldn’t wait to see me, huh?” We always joked. But in this moment, I could only make a joke to mask my fear.

“Can you feed him?” Mom asked. “I have a quick errand to run to Wal-Mart and will be right back.”

“Of course,” was my reply, as I turned to face my Dad, “But he’d better not make a mess.” Success! I had made him smile again.

She started to cry and he managed to utter something that we translated as, you’ll be right back. I’ll still be here.

And he was. He ate; I told him about my trip. He made a mess and I loved him for it because I could help him. He was my hero – I wanted to say thank you with all of my words and actions. This was easy compared to all he had suffered raising me through my teen years.

“I love you, Dad. You’re going to be ok.” We both knew it was a lie, but we both accepted it because we wanted it to be the truth.

 

Later that night the phone rang. “Is everything ok?”

“Can you come back over?”

“Sure.”

“Should I bring everyone?”

“No. Just you.”

Oh, no.

 

When I got there, Dad was on his hospital bed, hooked up to his BiPAP machine. It helped him expel the CO2 from his lungs as he was not able to move enough air in and out on his own anymore. My mom shared that he asked to be moved into his bedroom just after I had left. He fell asleep and hadn’t woken up since. “This might be a long night,” she shared.

“I’m here,” I told her, and him.

 

I sat holding his hand for about an hour. I told him things that he knew and tried to muster up the courage to tell him a few things he might not have. I was a coward through it all. I never said what I really wanted to. I didn’t know if he could hear me. I preferred to remember him from earlier that morning. From my wedding day. From when I was ten. This wasn’t what I wanted to remember about this man who took on the role of being my Dad when no one else would.

 

What happened after is a blur. Not because it moved quickly, but because I don’t want to dwell on the agony of the events. What I do know is that I was there, for my Mom, with my Dad, when it was important. He waited to say good-bye. He stayed until I could see him one last time and hug him. Right up to the very end, he was my Dad. The best Dad a girl could ever have.

Fireworks and other things loud (SOL 7/8/14)

Many of us attended a fireworks show this past weekend. This got me thinking about how doing something so exciting and “ordinary” as heading out as a family to see fireworks, at one point in our lives, was quite a to do.

With Asperger Syndrome, one can be either under- or over-sensitive to one’s senses. In the case of my son, it’s both, depending on the sense upon which we are focusing. In his case, he is under-sensitive in his mouth/oral senses. He started out as a thumb-sucker. As one myself, I didn’t realize that this can (please note “can” – I don’t want to encourage anyone to diagnosing every child who sucks his or her thumb as being on the spectrum) be one of the signs of an autistic child. Therefore, he mouths everything:  (when he was younger) his clothes (you’ve seen children with the whole front of their shirt soaked with saliva); the arms of his eye glasses (they seriously look as if we don’t feed him); any strap (from a coat or book bag that was anywhere near his mouth); fingers (of course); toys (I’ve taken away many a Lego, although he was well above the recommended age for playing with them, because of something he’s got in his mouth that I was afraid would become a choking hazard); and, also when he was younger, other less acceptable things such as the rubber matting on the floor of his preschool room and playground.

There are many wonderful “toys” that can be found online or through a place like School Specialty, for students who have this need. One’s Occupational Therapist would be a helpful resource in finding the “just right” and “socially acceptable” chew toy to satiate this need for stimulation. I’ve even encouraged other parents to get the doctor to “write a prescription” for gum: the ultimate, socially acceptable “chew toy.” Unfortunately, my son also has orthodontia. We just keep reminding him and, with age, he has grown out of this need to put everything into his mouth, for the most part.

Interestingly enough, this oral under-sensitivity comes with a plethora of textures he will not eat, or even sit near (food). Bananas were off the list fairly early in his life. Yogurt. Anything too cold, like an ice pop. These things are not for him. He will eat apple sauce, but not jello. We just (literally) took note of what he would and would not tolerate. Now that he’s older, while he’s still a “white diet” (starch) guy, he is willing to try new things from time to time. OK, not broccoli. But if it can be coated in “red” (his favorite color – aka ketchup), we are usually good to go. Getting him to try new foods this way was a wonderful strategy we learned from the amazing therapists at Children’s Hospital of Philadelphia’s Regional Autism Center.

Now onto noises. He has always been over-sensitive in the hearing category. Not bionic mind you – he cannot hear what I just told someone I got him for his birthday from a room away. And if he’s hyper-focused on something, forget him “hearing” me talk to him. But in terms of fireworks, the first time we attended, he cried and we had to leave just as they were getting started. The next few years I sat with my hands over his ears and he did just fine. This year, which triggered my recollection, he didn’t need anything! I was very excited for this “growth” in his life.

But he’s still the kid who shouts out that “it’s too loud” during a pep rally or assembly, for whom we have had it written into his IEP to be told before the school holds a fire drill, or who needs to leave a basketball game due to the buzzer going off too many times. Jodi Picoult once wrote a fiction book about a character with autism that really captured, for me, why this is the case when an over-sensitivity is present. She had the main character of her book explain, imagine having all of your nerve endings on the outside of your body. What would your “perception” of noise, or light, be in that case? Everything would be too much! Like myself on a migraine day, with smells being too powerful, let alone being able to tolerate noise and light.

For us, my son is “mild.” We have learned to show respect for his over- and under-sensitivities. This was accomplished through listening, watching, and recording (so we didn’t forget). While I am so excited for his growth, I am also mindful of many other students who “act unexpectedly,” and thought it important to share the why’s behind a child physically and sensorily rejecting something as exciting as fireworks on the 4th of July.

For whom do I write?

For a very, very, very (ask my husband) long time, I have only written for my professors. Undergrad, grad school #1, grad school #2, reading certification grad school, and then grad school #3 to earn my doctorate. Yes, there were a few years off here and there, but not too many (I’m not that old!). It was a place to start as, like most students, I emerged from high school feeling less than encouraged as a writer. Creative writing was systematically drummed out of me as well.

But who I was always able to write for were my children. Since 2003, I have written down things they have said, journal entries to document each milestone. And I’ve written a letter to each of them on each of their birthdays. Sometimes, I have used a favorite book, such as “I Love You the Purplest,” as a mentor text. One time, after attending a Poetry Mentor Text workshop with Rose Cappelli and Lynne Dorfman, I wrote an “I Remember” poem to my oldest son. Ultimately, I wrote my dissertation, unreadable as it may be, to him as well.

So, as I embark upon this summer of writing, Slicing on Tuesdays, joining Teachers Write! today, I write for my children. I want them to know who I am/was/will be on a more intimate level. While time and work do not always allow me to share my thoughts and feelings with them, my writing will. It will help them remember themselves in times when they might have been too busy being a kid to notice something they did or said that captured the essence of who they were in that moment. I want them to read about my love for them, and how I “saw” each of them, even when I did not always get a chance to tell them.

I write to them because they inspire me. They surprise me. They keep me grounded. They remind me of what is most important in life. Writing, I have found, is a crucial and valuable element of life. I am glad that my children, unbeknownst to them, have encouraged me to take time out of the hectic pace that marks my current situation, to write – to remember – to reflect – and to live.

A Summer Moment

We take the kids to Vacation Bible School where a hundred eager voices clamor to be heard. The cacophony of talking makes a melody of its own: screeches blend with shouts, harmonizing with children’s laughter. As the music starts, the discussion descends into a murmur. Kids raise their voices, off key, to sing words they have just learned. Some also try to match the movements of the leaders up on the stage. Most are just a second behind, creating an echo behind the song. Giving their full attention to the worship leader, bodies softly bump into each other here and there, creating a subtle rustling of feet as children give each other a slightly wider berth. My husband and I leave the auditorium’s bright lights and loud music to enter the outdoors, where we are met by the ebb and flow of the cicadas’ screeching vibrations. We sweat and walk, listening to the quiet that presses in upon us, interrupted by a distant lawnmower, the intermittent sound of a basketball, smacking pavement, our footsteps creating a synchronous rhythm on sidewalk. We smell the Pennsylvania summer: humidity, freshly cut grass, asphalt. We sometimes hold hands, until they become too slippery to stay connected. We periodically talk in hushed voices. Our legs radiate warmth from within. Then, it is time to return. A rush of air conditioning greets us upon our reentry. The auditorium, previously reverberating with music, singing, and kids’ voices, is silent – empty. We wait for each group of students to return, offering a smile and slight wave to each of our children, as they emerge from their classrooms, one at a time.

Happy Birthday

ImageThis slice will be devoted to this spunky one, who just turned six yesterday.

She joined our family almost five years ago. And while, yesterday, we were worried about what gift to pick out at Target with the (ton of) money Grandma sent, when to make thank you phone calls to relatives far away, where we would go out to lunch to celebrate her special day, whether we would have a cake or a brownie upon which to place her “6” candle, and how many likes and comments she received on Facebook (much more than the boys ever do, by the way), I got the opportunity to reflect, amidst the festivities, about her family far away. By this I do not mean her family that lives on either side of the United States.

We brought her home from quite a distance. A 20-hour plane ride to be specific. We took her from her family and a culture that we will surely not be able to replicate in Pennsylvania. Certainly, we can take her to an Ethiopian restaurant around the D.C. area that I’ve heard boasts her name. We can even take her to an Ethiopian culture camp that is held every summer, in Virginia. But we will never be fluent in speaking Amharic – and neither will she (at least not without herculean effort). She will not eat tibs, wat, or injera with regularity. (We actually did not enjoy the cuisine of her homeland.)

We do, one day, possibly upon her high school or college graduation, hope to take her to visit – as a tourist – her country. However, the city we will visit is not where she was born, although it is exceptionally beautiful in Addis Ababa. We want her to see her country, even if only a small portion of it. We want her to be proud of where she comes from. Part of my ruminations were about whether or not we are doing a good enough job.

I was also thinking of her mother. Was she thinking specifically of her daughter yesterday? Was she happy imagining all of the opportunities she is experiencing in America: dancing, playing softball, attending school, reading about Marty McGuire’s adventures, and laughing at Junie B’s antics? Has she found peace regarding the selfless decision she made, in allowing her daughter to live a life of opportunity and choices for girls/women? I admire her, although I only know her name – nothing more. She is a much stronger mother than I think I could ever be. I hope that she feels peace in knowing that her daughter has her own room, clothes aplenty, a brand new batting helmet, cleats, and bat (purple), and has asked Jesus into her heart. I hope that she smiles as she thinks of her sweet and sassy girl: fighting with her brothers, giggling constantly at school, loving Chinese food!

Happy Birthday, sweet girl! We are the lucky ones to have had you join us for the past five years. We have been blessed to have been the ones to teach you to ride a bicycle and to have watched you loose your first tooth – really, we have no idea where it got to! Your first teacher, your first painted nails. You have certainly bettered our lives more than we could ever enrich yours. You are our family’s constant birthday gift. And we have Ethiopia to thank for that.