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Posts Tagged ‘Susan Senator’

Weekly Whirl – Our Favorite Holiday Blogs!

December 23, 2011 2 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we are bringing you our favorite holiday blogs from across the web! We would like to wish you a wonderful holiday and a happy and healthy new year! 

Autism Christmas: Different but not less*
“Around the world families will be awoken by small children in the wee hours of the morning begging to see what Santa has left them in their stockings and under the tree. Later they will welcome guests or perhaps travel to see extended family for a special Christmas meal with all the fixings.” -Adventures in Extreme Parenthood

Nate’s Hanukkah list
“Nate isn’t one for surprises. He likes what he likes and that’s that. So when it comes time for his birthday, or Hanukkah, he types up a list of what he wants and we order it. The package gets delivered, he files his new stuff away with little to no fanfare and it’s over almost before it begins.” - Jeff Katz from Autism Support Network

About the Tree
But the past couple years she has decided to ignore the Christmas tree completely. Like… Meh. I am not going to pay any attention to these crazy people putting a treein a  house. Rearranging my living room and oohhing and ahhing and carrying on and putting stuff under it that nobody can play with and stuff on it that’s not even fruit. If I can’t climb it, jump on it, hide under it, spin it, or eat it, it’s of no use to me. Tree, shmree. Whatever people.” -Rhema’s Hope

Christmas 2010
“I’m remembering a day that worked. A day in which every member of the family participated in the celebration of the holiday in his or her own way. A day upon which compromises were struck and expectations were sent out to sea. A day in which any unnecessary demands were dispatched. A day when small prizes were treasured and time was valued above all else. A day that never would have been possible just a few short years ago.”
-Diary of a Mom 

I HAVE A LITTLE DREIDEL (FOR AN SPD HANUKKAH)
“Any holiday can disrupt a family’s routine. One that is eight nights long can really change things up. My son, with all of his sensory issues, can’t sit through an organized Temple Tots celebration or anything like that. So for a successful holiday, we’ll be doing all our celebrating at home, just like I did when I was a kid. And this year, we’ll be making our Hanukkah sensory friendly.” – Alysia from The SPD Blogger Network

Christmas Magic
“Life as a special needs child is tough.  When she role-plays, I’m at once elated that she is developing her pretend play skills, and dismayed that her doll is “going to therapy” day after day. Childhood should be about wonder and magic, not mundane, routine therapy. So at this time of year, I find it even more important to put the wonder back into her life.” – Spectrummy Mummy from Hopeful Parents

A Season of Difference
“Schuyler understands how tribes are formed, I think, at least on some visceral level.  And rather than feeling overwhelmed at how we are spiritually out-of-sync with most of those around us, she is encouraged by our little pod of difference.  In her own way, Schuyler understands the concept of family better than most.” -Robert Hummul-Hudson from Support for Special Needs

Early Hanukkah
“Jacob actually yelled “Happy Hanukkah!” to everyone this year instead of “Merry Christmas!” which he used to be wont to do, as there is so much more of that in the world around him to catch his echolalic attention.”  - The Squashed Bologna

Autism’s Season of Hope
“It dawned on me that this could only mean one thing:  perhaps the experts had it wrong.  Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around him. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”
Susan Senator with a forward from Lisa Belkin

Wonderful Christmas Time
“Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.”  - Try Defying Gravity

The Spectrumville Christmas Letter
“It’s that time of year again to share with you our adventures in this journey we call life. 2011 has been another year of magic and wonder…” – Erica from Laughing Through Tears 

In Their Own Words – Experience Breeds Ability

February 17, 2011 22 comments

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“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.

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