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Posts Tagged ‘Holiday’

‘Tis the Season, 2011

December 26, 2011 6 comments

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

It’s that time of year again.  Time to reflect on the past twelve months and count my blessings. 2011 was a strange ride, full of jarring twists and turns. I’ve lost a few marbles but added a dress size. My son, Josh, a low-functioning but charming fifteen-year-old, is still in the throes of puberty. (Geez, will it ever end?) Despite some cognitive regression, his social skills have improved greatly. He knows more restaurant managers than I do. Good thing, because I’m a lousy cook. So, I will give thanks for my son’s growing sociability, his love of school and family, and recognize a few more of the year’s blessings:

*I’m grateful that Josh likes the cafeteria as much as I do. We try to arrive around 4:00 to miss the dinner rush.

*I’m grateful that Josh’s limited vocabulary is becoming more age-appropriate.  Gus, one of his longtime aides, has taught him how to say, “I want to drink beer at Hooters.” It doesn’t matter that Josh doesn’t understand what he’s saying. Gus is still delighted.

*I’m grateful that only chemicals give me headaches instead of the pubescent odors that assault my nose every day.

*I’m grateful for Josh’s laugh.

*I’m grateful–thrilled actually—that my son and his twin sister, Jordan, are going to the same school for the first time in their lives. Schlepping them to and fro every day is a pleasure. Really.  I tear up sometimes when I watch them walk in together.  Jordan hugs her brother goodbye and shakes hands with his classmates before beating the bell to her own class.

*I’m grateful that I don’t pull my hair out over Josh’s seizures.  It falls out painlessly.

*I’m grateful that we haven’t given up on Josh’s speech.

*I’m grateful that Josh is obsessed with “sook.”  With school.  Every morning he shouts the word deliriously in the shower, and at the table, and from the rooftops. “SOOK!  SOOK!!”  It’s only a problem on weekends and holidays.

*I’m grateful that the thickening hair on Josh’s legs is finally covering his bug bites.

*I’m grateful that homecoming weekend was more sweet than bitter.  I allowed myself to cry only for a minute when nobody was around.  I always thought my twins would be double-dating in high school. But I was thrilled for my daughter, who looked radiant, thrilled about her very sweet boyfriend, and thrilled that my son didn’t care one bit about what he was supposedly missing.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Holiday Card Lore

December 2, 2010 30 comments

This “In Their Own Words” is by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Tis the season of holiday cards! For the past 28 years, our family has sent a photo to our patchwork of family and friends. We are not that family that sends a long newsletter with updates of the fabulous year we had, nor are we the ones that send a generic holiday greeting. We send a photo, of the whole gang, mostly shot with a self-timer.

You should know that before my phenomenal photographer of a mother decided to move out of the dark ages and into the world of digital photography, we were reliant on film. After one of our staged photo shoots, we would run to the one-hour-photo and hope that there would be at least one photo we could send. If not, we were back at it!

My brother Jeff, who was diagnosed with autism 23 years ago, isn’t always the most photogenic guy and it is a challenge to get his handsome face to look at the camera natural and at ease. The rest of us have to hang tough, smiling away with hopes that Jeff looks good in one, often making the sacrifice to look our best.

Rather than blame Jeff for unflattering photos of myself through the years, I defer to my mother. She loves everything about the holidays. ‘Christmas Carol’ is her moniker and with reason! Once her ‘Christmas iPod’ surfaces, I know that our home will be transformed into the North Pole in no time! She will be decked out in her holiday jewels and sweaters, cranking out thousands of cookies for her adoring fans. Her wackiness really brings us all so much joy during the season.

We keep it with us through the year because every holiday card is featured down our staircase. We are constantly reminded of bad haircuts, braces, wild fashion statements, and terrible concepts. To tell the truth though, I can’t help but smile and laugh as I look at them.

I am thankful that these shoots have left behind an entire archive of unused photos. Our cards have popped up everywhere – schools, restaurants, newspapers, you name it, and it’s been there! Here are some “misfit” photos (a little Rudolph humor, get it!).

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This year, you should know that our card is extra special. In the beginning of June, our family transitioned to a new phase. Jeffery, at the age 25, moved into a group home. It has been a wonderful experience, but needless to say difficult and trying. After two weeks of Jeff getting settled, we took a family vacation to our beloved Montauk, where our photo was taken.

Montauk has always been a safe haven for us. Hopping on a plane was never an option, but piling in the car and heading to the tip of Long Island was. Jeff always had the run of the place and we could enjoy our relatively private beach without the glare of strangers. This year was so special because the five of us were back sleeping under the same roof. Jeff didn’t miss a beat making the transition from his new home. He seemed older to me; making his bed, cruising to the beach for an impromptu bonfire, even napping!

On this particular day, we were surrounded with friends. We hit the beach earlier with a whole group of loved ones. Of course it wasn’t all relaxation – we all took turns making trips to the ocean to fill Jeff’s buckets, which he would dump out moments later. Eventually, we made our way back to the house to make a huge feast. Eat, drink, and be merry!

As light flooded through the dining room and the sky began to change, we knew we had to start moving to show our guests the gorgeous Montauk Lighthouse sunset, the spot of many Christmas cards.

We got to the Light House and hit the ground running; skipping rocks, climbing the jetty, and hamming it up for the camera! I was in heaven. All of us were together again, sharing our favorite place with our favorite people. Jeff was beaming with a smile on his face, ear to ear.

For that night autism didn’t matter. The months of sadness and stress were a thing of the past. Our family was able to make it through, in one piece, stronger than ever. Jeff is in a wonderful place and he showed us that night, that we aren’t a thing of the past to him. He will always love us and come home to us, even with his newfound independence. As a family, we laughed and loved. This year we had scores of photos to choose from, taken by our friends, on that amazing night.

Pictures say a thousand words, and I think it is important for the folks who receive our card this year to have the back story. Every year our card comes from a place of love, but this year, it may have a little more.

So from our home to yours – eat, drink, be merry, and have a wonderful holiday!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

AutismCares this Holiday Season

November 29, 2010 Leave a comment

In times of economic hardship, families with one or more children with autism are among those hit the hardest.  In addition to the high costs and stress associated with caring for a child with autism, a sudden job loss, accident, home foreclosure, or natural disaster makes an already stressful situation worse.  When social services, family and friends, and loans run out, where do these families turn?

AutismCares helps families affected by autism to cover costs associated with critical living expenses such as: housing, utilities, car repair, daycare, funeral expenses, and other essential items on a case-by-case basis. The program relies on donations to assist these families who are in need.

During the holiday season, hardship is felt even more for these families and we need your help to continue to be able to provide much needed assistance for the community!

Please click HERE to donate

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