Sh*t My Sensory Kid Says!

Tuesday, February 14th, 2012

Artwork by:  Melissa Zacherl

Today’s gift:  inspired by two brilliant blogger friends 1) Mom-Of-Twins-Blogger Jane Roper (Babble.com’s Baby Squared Blogger) and 2) Mom Blogger Danielle Ann Michaud-Elwood (Babble.com’s Baby’s 1st Year Blogger and one of my Blogging Bitches!!) I give you:

“Sh*t My Sensory Kid Says!”

1.  “I LOVE YOU, MOM!!!!”

2.  “I HATE YOU, MOM!!!!”

3.  “Stupid! Idiot!”

4.  “Why? Mom? Why? Mom? Why? Mom? Why? Mom? Why? Mom? Why? Mom?”

5.  “I HATE_________ [insert name / object here]!”

6.  “Want to hear my Burp Talk?”

7. “OUUUUCHHHH! It’s too loud!”

8. “Can I go listen to my James Taylor CD now?”

9. “You are KILLING me!” (usual remark getting dressed for karate)

10.  “NO!” (answer to any transition)

11.  “I need more granola with these tater tots!”

12.  “Please can I have more candy? It’s ok for me Mom, it is!” (bouncing up and down)

13.  “I AM sitting! I AM calm!” (uttered while standing and jumping of course)

14.  “May I please watch a few more minutes of YouTube?” (sweetly while his face is an inch from the tv screen)

15.  “My Body, Brain and Behavior are a 1 right now.”

16. “I need Fleece-y RIGHT NOW!” (fav fleece sensory blanket to bury himself in for input)

17. “You are the BEST Mom, Mom!” (whispered as he’s falling asleep and finally NOT moving)

18.  “Will you massage my arm?” (usually requested when I am driving!)

19.   “I’m FINE, Mom.”

20.  “I already pee-ed, Mom!”

21.  “I don’t have to pee, Mom!”

22.  “UGH! I don’t have to go [to the bathroom], Mom!”

23.  “Shut-up!”

24.  “I LOVE YOU, MOM!”

# # #

Check out my Babble girls here:

http://www.danielleelwood.com/

http://janeroper.com/

The Sounds of Silence

Wednesday, October 19th, 2011

Today’s gift:  M’s teacher sent this email about his vocalizations, non-contextual sounds, and vocal tics

“What an awesome day M had!  Numbers were low again straight across the day!”

Book Review: The Anti-Romantic Child by Priscilla Gilman

Thursday, May 26th, 2011

When I first heard about Priscilla Gilman’s highly anticipated memoir The Anti-Romantic Child: A Story of Unexpected Joy (Harper, May 2011), I could not wait to get my hands on it.  I knew the writing was personal, heartfelt and unique (she weaves poetry throughout — a fellow English major’s dream!).  The early reviews raved about the book and Gilman’s story promised to publicize special needs parenting to a wider audience. I quickly requested an advance reading copy and waited every day for the UPS truck to deliver it.

When I received the galley, I instantly tossed aside everything and devoured the book — twice. In a row.  I loved it.  That was in April.  It’s May now and I’m finally sitting down to finish my post.  Why the wait?  I didn’t anticipate how the book would affect me or how deeply connected I would feel to Gilman.  In fact, my very first note about the memoir was, “first day, opened book, within pages it read like it was M’s story.”

The immediate feeling of “I’ve been there” coupled with recognizing my son M in Benj took hold of me and held on long after I closed the book.  I felt like I was traveling back in time as I remembered my own hopes and dreams for M and his twin sister, J.  I remembered all of M’s early health scares and later how he lagged behind his peers in basic gross and fine motor skills. Most of all, I froze when I read how Priscilla embraced Benj’s “specialness” and his “gifts” only to learn that these were symptoms of a serious developmental delay.   Her many examples of her son’s early reading and his prowess with words and numbers numbed me.  I could have been listening to myself tell M’s story but instead was reading about another child, another set of parents and another mother’s broken heart.

Priscilla deftly describes the intense therapies, the educational challenges, the complex parenting and the uniquely deep love of a special needs child.  Her book inspires me to commit to doing more of everything (and anything) to help our child succeed.  And most of all, she restores our collective optimism and yes, even our romantic visions, for all of our special children.

The Anti-Romantic Child touched my core.  Ms. Gilman’s perseverance, her devotion to her family and her dedication to celebrate all the parts of Benj — the good and the not-so-good — are lessons for all parents.   Her perfect book about the imperfectness of her son inspires, dazzles and makes you fall in love.

I recently confessed to a friend my fear that my post could never live up to the magic of Ms. Gilman’s tale.  In that moment of my confession I realized that like Gilman I celebrate the unexpected every day and that our mutual devotion to the joy of the unexpected creates new magic.

For more information about Priscilla Gilman and the book please visit these links:

https://www.facebook.com/priscillagilmanauthor

http://www.twitter.com/priscillagilman

http://www.harpercollins.com/authors/34589/Priscilla_Gilman/index.aspx

http://www.youtube.com/watch?v=iAwM3GXiSZE

http://www.amazon.com/Anti-Romantic-Child-Story-Unexpected-Joy/dp/0061690279/

*Click the book jacket for the Newsweek feature.

Find Your Order: A Q & A with Mary Carlomago, author of LIVE MORE, WANT LESS

Monday, February 7th, 2011

As a working Mom of twins, I can’t think of a more important parenting lesson than showing my children how to create order. And for M especially who has Sensory Processing Dis-order, order is a required life survival skill.   The lessons that a clutter-free home impart are really life lessons on how to thrive in any situation and how to live a happy life.

I am very, very excited about today’s gift:  incredible advice from order guru Mary Carlomagno, author of the new book LIVE MORE, WANT LESS: 52 Ways to Find Order in Your Life (Storey Publishing; $12.95)) and the Founder/President of order. (www.orderperiod.com)!

Mary believes that organization is not one size fits all.  Her simple and action-oriented system for organization has been featured in Real Simple, Woman’s Day, Quick and Simple, For Me magazine, Newsday and the Daily News. Mary writes frequently on the subject of getting organized for magazines and newspapers and she has appeared on The Oprah Winfrey Show, The Today Show, CBS News, Good Housekeeping TV, Fox and Friends and more.

Recently, I had the opportunity to interview Mary and am thrilled to share her practical and accessible advice here on My So-Called Sensory Life.  Her answers have already helped me and I know they will help special needs families reading this blog as well as all families and individuals craving organization.

Here’s to order!

Like you, I love organizing and creating order.  As you describe in your new book LIVE MORE, WANT LESS I als0 enjoy rearranging my closet or visiting The Container Store.  Once I became a Mom of twins, though, clutter  slowly seeped into my life.  How can a once-ordered person reclaim that identity?  I don’t want to be lost in the clutter of parenting, running a household, and running a business! I want the old me back!

MARY: There is nothing that can throw your household into a clutter tailspin like having children, they come with what seems to be double of everything.  Owning your own business also can create a new category of disorder, just think about it, all this stuff used to be housed in your cluttered office at another place.  (I am speaking of home offices here).

So, how do we get out from the pile- the key is maintenance, create areas where outgrown clothing and toys can be stored is the first one, this helps keep your most used items nearby.  Things come in, things need to go out.  So practice daily cleansing and purging, just like you brush your teeth or do your laundry, making organizing a part of your day.  It can be hard to wait for the perfect condition to exist to make your life over, but hey you did not get this way overnight and you will not give yourself an instant makeover by tomorrow either.  Engage in the process with small steps and stop “shoulding” on yourself- enjoy the gifts that you have, great kids, great job and build on that.  Clutter control takes confidence, so leap in and you will  be empowered by your progress!

I can’t part with any of the artwork and mementos created by my twins! They are 8 now — soon I won’t have room for more!  Where / how should I save these mementos?  Any advice?

MARY: Resist the inclination to save everything, pick a few pieces and store them well in either photo albums that you can slip art  into, in plastic sleeves, I love these, because you can customize and label them later and they come in large formats to house larger sheets.  I also like a “memory box” where you can add in memorabilia and tuck the lovely box (see container store) in the top of the twins closets- one box for each and use an editing eye when deciding what to keep.

My son has Sensory Processing Disorder and clutter is very bad for him because visual chaos is stressful and confusing.  How can I create order in our playroom (and in his bedroom) that is visually calming and also works as an easy organizational system?

MARY: Consistency is the key here.  I love this system: http://www.ikea.com/us/en/catalog/products/S49860215But there are other shelving systems that allow you to put bins by category (i.e., cars, books, dolls) and then put the bin on the shelf.  I also really like the storage as seating concept. It is like double duty furniture.

http://www.onestepahead.com/catalog/product.jsp?productId=537104&cm_ven=SF_Froogle&cm_cat=NA&cm_pla=NA&cm_ite=NA&orderType=6utm_source=SF_GoogleProducts&utm_medium=datafeed&utm_campaign=product&cvsfa=2917&cvsfe=2&cvsfhu=323038323

My public relations business requires a lot of emailing, paperwork, books and printed lists.  I struggle with maintaining all the materials and hard copies AND the emails.  Should I spend time purging every day? Every week? I can’t keep up!

MARY: Never under estimate a good filing system even if it is a traditional filing cabinet. Get nice folders and a good label maker and color code by topic, that will help.  Also be brutal when deciding what to keep hard copies, many things can be scanned on computer or kept on disc- many things are duplicate and retrievable, so make sure you need the item before giving it prime real estate and yes, purge, purge purge.  If you keep up daily, you will stay ahead of office clutter.  As you know clutter is just a pile of delayed decisions, so act daily to stay ahead and opt out where you can!

In LIVE MORE WANT LESS you tell us “Love Things That Love You Back” — can you share some easy tips for busy Moms like me to sort, save, and purge items we have emotional attachments to?

MARY: First, try and release the emotion, does that dress represent that person, that project file represent your former career.  Ask yourself if you can retain that memory without keeping 12 copies of an annual report you once worked on.  Try to think of things being useful to your present, not your past.  It is okay to keep a copy or two, but not boxes and boxes.

If you are stuck, bring in someone objective to help, a former business colleague, work friend, friend or professional organizer.

How can we find order in our life without a professional like you?!  Does your new book offer a prescription for conquering and combatting clutter and a way to achieve a better life?

MARY: My book LIVE MORE, WANT LESS is meant, just for this reason, it offers real life solutions that I have worked on with my clients.  The key is to begin, I think so often we wait for perfect conditions to begin, instead we should engage in the process.  Clutter control like any other learning process has a learning curve, but once you begin you take control, you gain the power and changes begin to happen.  So in essence you can be your own professional organizer and while a professional at your side is certainly  a great source of help, encouragement and ideas, you hold the power to make the change, so have the confidence to try, always knowing that you can change it up later, because you can.  It all evolves with you!

# # #

Thanks, Mary!

To order LIVE MORE, WANT LESS:

Amazon.com


For more information:

Mary Carlomagno
www.orderperiod.com
office: 201-222-1929

You Can Do It, M

Monday, January 31st, 2011

I devoted some of this past weekend to cleaning my office: organizing work, home, and family files and materials.  Fans of My So-Called Sensory Life already know how much I adore Clutter Guru Peter Walsh (Read my Mr. Clean Post here) and after a marathon of his new OWN show, I was energized and ready to conquer the clutter.

I’m proud to say that I cleaned and cleared away most of my unnecessary files and dumped loads of dated paperwork.

I’m also thrilled to report I stumbled on a few treasures.

One of the treasures is today’s gift:  one of M’s favorite books You Can Do It, Sam by Amy Hest.

It seems like just yesterday I read this book to him over and over while he lay in his crib eyes riveted to the book.  My husband and I read this Sam book (and another one called Kiss Good Night) so many times that we could recite the lines anytime, anywhere.  Like magic words, they calmed M (and J) and became our nighttime lullaby.

My other memory is the very vivid one about M’s early attachment to books.  From the moment he could hold a book, M has loved every part of them.  Books offered a calming object to his sensitive nervous system and a favorite object to touch and hold.  Books were an early obsession for M.  This seemed great until he decided to explore the books by tearing the covers off, then pulling the pages out, and finally making piles of paper to roll around in and use as a non-book activity.  The first time I saw the ripped pages of a favorite book, I felt physical pain.   After that day, I listened intently every time M was alone with a book so that I could hear the second he started to tear a page.  We lost many beloved characters during M’s tearing phase, but happily he grew out of it and his book obsession eventually lead to his early reading prowess.

I’ll never forget Sam or Mama Bear — they were a real part of our early journey with M and J and Sensory Processing Disorder.  And now I have a new memory about the book:  when I showed it to M tonight, he held it with love, kindness and the gentle touch reserved for a beloved object. Deep down, I always knew M (and Sam) could do it.

CCD

Sunday, January 30th, 2011

Today’s gift:  M really likes Sunday school (CCD)!  And he’s a star in class!

Last year we policed his CCD class and had to give his teachers elaborate plans (and safe pencils because he almost swallowed several erasers from chewing on them) so he could stay on task for the hour-long class.   It was a struggle each Sunday and he missed many classes.  It was very hard for all of us; M wanted to do it, but once there it was too much for him.

Yesterday, as he did last week and the week before, he told us that he really likes going to CCD and that it is “great” — especially the  good snacks.  When class ends, he recites the lesson of the day and thoughtfully discusses it with our family.  It’s getting through to him and it’s a huge milestone for a guy that struggles going to school M-F.

As my relatives from the old-country used to say, someone is looking out for us upstairs.

Amen!

Dreams Come True: The Magic Kingdom Part I

Tuesday, January 18th, 2011

Before I began blogging, I drank the Disney Kool-Aid and became an instant believer that the place really is magical and that Disney really can make dreams come true.  This after a life-altering trip with the twins.  I’m still stunned about this myself.

For the record, I am not a theme-park fanatic and prior to this “Dreams Come True” trip, our family experience with Disney included a visit when the twins were 2 1/2 (and we were clueless about M’s needs) and M rode one ride (Dumbo) after massive coaxing and bribing and then spent the rest of the time on the slimy Disney pavement in front of the Pinocchio Cafe, face down, crying, screaming, tantruming and I vowed never to return.

Fast forward several years:  armed with crucial parental knowledge, a Sensory Processing Disorder Diagnosis, The Unofficial Guide To Walt Disney World (by Bob Sehlinger and Len Testa) and my burning desire to conquer our past failure, we decided (somewhat spontaneously) to try The Magic Kingdom again.  Why? With all the sensory stimulation, crowds, noise, lines, social expectations why would I ever put M in that situation again?  G.A.C.

Guest Assistance Card.

Accidentally, I discovered that Disney has a program for guests with “invisible” disabilities and challenges like Autism for example.  Upon entering the park, families with special needs children are issued this card (go to Guest Services before entering; the child must be with you) and then the magic begins!

M’s issues were handled with kindness, generosity, and respect. In fact, we were all treated like royalty.  Every person in a Disney uniform that glimpsed our card became an instant friend or cheerleader or guide.  Without the G.A.C. we could NEVER experience Disney.  NEVER.  And J could NEVER experience it as a typical child because M would be on the ground in terror just like he was at 2 1/2.

I can’t rave enough or say enough about the doors the G.A.C. opened for our family — literally and figuratively.  We saw pure joy on our children’s faces and my husband and I felt like kids again.

Thank you Disney — a dream is a wish your heart makes!  I can’t wait to return!

# # #

For More Information:

1.  Google Disney Guest Assistance Card

2.  Follow this link and read about the card in The Unofficial Guide to Walt Disney World:

http://books.google.com/books?id=HnBMWdps1-0C&pg=PA367&lpg=PA367&dq=the+unofficial+guide+to+disney+guest+assistance+card&source=bl&ots=zvy7cUk358&sig=-lqx89IWK_bYjxVN_PzdrFCp1jA&hl=en&ei=lfNATcGUDYSesQP_zaX7Cg&sa=X&oi=book_result&ct=result&resnum=6&ved=0CDwQ6AEwBQ#v=onepage&q&f=false

3.  Buy the book:

http://www.amazon.com/gp/product/047061529X/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=047046030X&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1HGCG51NFYMTV5R6GQR7

Middle March

Thursday, January 13th, 2011

Today’s gift:  M was able to march into the middle of an undesirable situation and take a breath and take the middle ground.  Sure, he started to tantrum and started to fall back on past behaviors.  But, today his reaction wasn’t extreme. It wasn’t out of control.  It was as close to neutral.

Like all of us, M has some “hot buttons” and today’s situation was not easy for him. It was unexpected.  It was very undesirable.

To my utter delight, M took the high road.

Life is a highway, M.  Great driving today.

I See You

Wednesday, January 5th, 2011

click image to enlarge


I can’t stop thinking about this photo for several reasons:

1.  This picture really is worth a thousand words.  Isn’t it extraordinary?

2.  This is my friend and her son!! Yes, right next to President Obama and his wife Michelle.  Wow!

3.  When I showed the photograph to M and asked him about the picture he screamed, “Hey, that’s me, Mom!”

I keep staring at this image and saying, “Wow” over and over.  It captures so much and says so much to me.  When I finally stopped staring, I emailed my friend and asked her for permission to post about it and she said yes and so here is today’s gift.

My incredible, inspiring friend Michele Pierce Burns and her incredible, inspiring son Danson (nearly non-verbal and autistic) recently visited the White House during the holidays because President Obama received a copy of Danson’s book Danson: The Extraordinary Discovery of an Autistic Child’s Innermost Thoughts and Feelings (www.dansonsbook.com).  After  Danson and Michele passed security, they had to wait a considerable amount of time until they could have a private audience and picture with the President and First Lady. By that time, and given the large crowds, Danson’s senses were overwhelmed.  I can only imagine M and his sensory needs in a similar situation — lines, noise, visual chaos, uncertainty.  It’s painful to even think about. Of course, the Obamas walked in just as Danson reached his limit (and was scratching Michele in the face–I can’t tell you how many times I’ve experienced the same meltdown and fight or flight reaction from M).  Thankfully, the Obamas were very calm and understanding (both Danson and Michele were weeping by this time) and hugged them.  All of this and so much more is captured in this beautiful photo.  In fact, I’ll fail if I try to write too much about it.

When I look at Danson in his headphones and Michele in her gorgeous dress and smile, I can hear and feel powerful words from the silent language that all Special Mothers share.  I can only thank Michele and Danson for having the courage and the strength to take this journey for all us of that can’t and for making us all see.

I could go on and on, but instead I’ll share some links below along with details about The Genius Of Autism event (Michele is a Co-Chair) in New York City on January 10th at Carnegie Hall.  The event details follow:

Time
Monday, January 10 · 6:00pm – 9:30pm

Location Zankel Hall @ Carnegie Hall

881 7th Avenue
New York, NY


6:00pm – 8pm VIP Reception, Art Exhibitions, Silent Auction
8:00pm – 9:30pm Performance

Laura Linney is the event’s mistress of ceremony

Special tributes to the honorees will be made by:
Dr. William H. Cosby Jr.
Malaak Compton-Rock
Susan L. Taylor
Holly Robinson-Peete
Opera Diva Leona Mitchell
dre.dance
Kelli O’Hara from South Pacific
Billy Porter
Deepak Chopra

And many more surprises…….

General Admission Tickets are $150.00 and can be purchased online at:
https://www.carnegiehall.org/SiteCode/Purchase/SeatSelectionPerformance.aspx?startWorkflow=true&quickBuy=false&quantity=1&eventId=17188
Or through Carnegie Hall, 212.247.7800

VIP Tickets are $500.00 and can be purchased online at:
http://www.mccartonfoundation.org/event_registrations/add/The%20Genius%20of%20Autism
Or through Suzanne Rubin, srubin@mccartonfoundation.org or 631.796.3010

Can’t Attend? CONTRIBUTE at http://old.mccartonfoundation.org/donate

About Danson and Michele:

http://www.dansonsbook.com/index.php?view=about_the_authors

Baby Love

Monday, December 27th, 2010

Today’s gift is a Christmas miracle:  M held Baby M on his lap for a children’s group photo!

Many earlier MSCSL blog posts shared details about M’s sensory processing disorder and in particular his auditory processing and sensitivity. I also shared his fear of babies — their crying, their unpredictability, their otherness.  M always avoids babies.  And if he can’t, he stays far away from them often plugging his ears or burying himself into the nearest grown-up. 

At holiday gatherings, M is usually left out of family photos — in part because he can’t take the proximity to the littlest family members.  I suffer silently during these photo shoots and tell myself it isn’t that big of a deal if he’s not in some silly photo.  But of course I feel bad — bad that we try to force him to do it and then that we always abandon the picture taking in a sweaty mess.

Today, my folks wanted a grandchildren photo in front of the Christmas tree.  I braced myself — all the girls and the baby and M and J only. No grown-ups.  In most families, this ritual is an after-thought — a quick interruption in the socializing or playing or drinking.  I decided to calmly offer the opportunity to M and then leave the choice up to him. 

I walked into the living room as the children trickled in and I sat on the couch to watch the scene play out.

M entered the room tall and calm and sat right in the middle of the tree-child madness!  Stealthily, I pulled out my camera ready to snap away as my Dad readied his.  Then, like swarming paparazzi, flashes flashed, cameras clicked, children were rearranged and what to my wondering eyes should appear in my view finder but Baby M sitting on my M’s lap!  A 5 month old baby on his lap with no adults around, holding her perfectly. No fear, no stress, no hitting or hurting or fleeing.  I dared to stare and saw the miracle unfold before me:  both were all smiles with the same sparkle in their eyes and love in their embrace.

I felt so much joy and love and pride and so did everyone — especially M.

Joy to the World Baby!