Tag Archives: paige

Celebrating Grandparents (Particularly Those in Special-Needs Families!)

20 Sep

September is National Grandparents Month, and I’m overwhelmed once more thinking how much my parents have done for my family, particularly my 15-year-old daughter with autism.  My mother flew from California to join us for Paige’s neurology appointment in the spring of 2000, the horrible one during which she received the definitive autism diagnosis.  A year later, my parents moved here from the Silicon Valley to support us.  Five years after that, when I gave birth to Paige’s baby brother, my mom came over every school morning before 7 a.m. to watch Chip so I could get Paige off to school.

My dad’s no slacker, either.  He’s provided boundless financial and emotional support—neither of which I can imagine doing without.  He has bonded with our neurotypical son, Chip, to the extent that they have LEGO playdates, go see movies together and just talk.

All grandparents who choose to involve themselves (in a thoughtful, encouraging way) in the lives of their children’s kids deserve high praise.  It can be tricky sometimes with a disabled child, especially one like my own who is non-verbal.

In honor of National Grandparents Month, Autism Speaks (the nationwide nonprofit founded by grandparents of a child with autism) has created A Grandparent’s Guide to Autism.  This family support tool kit is designed to help guide and encourage grandparents to establish positive and successful relationships with their grandchildren and the rest of their families.

Click here to read A Grandparent’s Guide to Autism or visit Grandparents Autism Network at www.ganinfo.org.

And We’re Off: How I Spent the Summer of 2011

14 Jun

To understand my complete and utter delight at how this summer is shaping up, you need the backstory on Summer 2010—the single most difficult season I have ever endured.

We’d just come off a dreadful year of junior high, which my now-15-year-old daughter with autism plainly loathed.  Another student had bitten her four times; my husband and I had lost confidence in the staff, both their teaching skills and their ability to shield our daughter from harm; what’s more, Paige refused to go to school and, physically, I couldn’t make her.

So in June 2010, I simultaneously pulled in and reached out.  Pulling in for me translates into limited social contact and lots of “head time,” where I mull different possibilities of what to do, help to see and paths to take.  (“Head time” gets very noisy, as you might imagine!)  Reaching out meant seeking input from my contacts in the DFW autism community, several of whom held my hand through the often-convoluted process of securing school-based and publically funded services.

I worked like crazy.

Laid bare our situation to strangers.

Prayed nonstop.

Fast-forward a year to Monday, June 13, when Paige happily hopped on the bus for her first day of summer school.  Which went great!  (Her teacher emailed me last night with the full scoop. The day was truly fabulous.)

My personal goal for this summer is to live in the moment—to enjoy the fun times and learn from the tough ones.  Also, I plan to remain mindful and grateful for how far we’ve come as a family from a year ago.

Here’s hoping your summer is fabulous, too!

Autism Awareness Month: Where to Find Help

26 Apr

As I know firsthand, an autism diagnosis typically terrifies most parents.  From daily realities to dreams of the future, moms, dads and siblings must process the news and begin adjusting their expectations.  My advice: give yourself time to grieve then reach out for help.  (I wasn’t good at either one of those; I’m convinced I would have fared better if I’d just let myself feel crummy after my now-15-year-old daughter, Paige, was diagnosed as a preschooler.  I shut down instead.)

Here is an abbreviated list of resources from Autism Speaks, the nationwide advocacy group that might help you or a friend coping with a new diagnosis.  For more, visit autismspeaks.org:

Autism Research Institute (ARI)
Founded in 1967 by Dr. Bernard Rimland, ARI conducts and fosters scientific research designed to improve the methods of diagnosing, treating, and preventing autism.  ARI also disseminates research findings to parents and others worldwide seeking help.  One of ARI’s primary projects, DAN! conferences share information and ideas toward defeating autism as quickly as possible.

Autism Society of America (ASA)
ASA exists to improve the lives of all affected by autism.  They do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy.

Defeat Autism Now (DAN!)
A project of the Autism Research Institute, DAN! meetings bring together physicians and scientists from around the world to develop advanced methods of diagnosis and treatment.  DAN! Conferences and practitioner trainings are held twice a year.

Families for Early Autism Treatment (FEAT) or www.featnt.org/home.php.
FEAT is a non-profit organization of parents, educators, and other professionals dedicated to providing Education, Advocacy and Support for the North Texas autism community.

First Signs
First Signs is dedicated to the early identification and intervention of children with developmental delays and disorders.  The organization provides a wealth of resources ranging from healthy development to concerns about a child: from the screening and referral process, to treatments for autism spectrum disorders.  Their stated goal is to improve screening and referral practices and to lower the age at which young children are identified with autism and other developmental disorders.

Generation Rescue
Generation Rescue was formed in 2005 by parents of children who have been diagnosed with childhood neurological disorders including autism, ADHD and other learning disabilities.  Their belief is that most of these conditions are environmental illnesses that can be treated through biomedical intervention.

National Autism Association (NAA)
NAA’s mission is to educate and empower families affected by autism and other neurological disorders, while advocating on behalf of those who cannot fight for their own rights.  They aim to educate society that autism is not a lifelong incurable genetic disorder but one that is biomedically definable and treatable.  Their efforts include raising public and professional awareness of environmental toxins as causative factors in neurological damage that often results in an autism or related diagnosis.

Organization for Autism Research (OAR)
OAR was created in 2001 by parents and grandparents who shared a common belief that applied research would answer the questions that parents, families, individuals with autism, teachers and caregivers confront daily.  No other autism organization has this singular focus.

Talk About Curing Autism (TACA)
TACA provides information, resources, and support to families affected by autism.  For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments.  TACA helps to strengthen the autism community by connecting families and the professionals who can help them.

Autism Awareness Month: Disabilities on Film

19 Apr

Even at a time where 1 in 110 kids receives an autism diagnosis—meaning virtually everyone in this country has some kind of contact with a child on the spectrum—I still get this question with fair regularity: “Can your daughter memorize the phone book like the guy in Rain Man?”

I don’t really mind.  Before 2000, when my Paige received her diagnosis, my only point of reference was Dustin Hoffman, too.  Paige (now 15) isn’t a savant and doesn’t talk.  As Dr. Carolyn Garver, director of the Autism Treatment Center in Dallas, puts it: “If you know one person with autism, you know one person with autism.”  They are like snowflakes—each with their own unique strengths and quirks.  (Which might just sum up every kid out there!)

I do appreciate media depictions of kids on the spectrum, if only to raise awareness.  It seems most of these projects see the light of day when a producer or writer has a child on the spectrum.  So much the better:  the “insiders” perspective can only help round-out the depiction in film.

Which brings me to a new movie making the art-house rounds (which I’m hoping comes to the Angelika in Dallas ASAP!): “FLY AWAY”.  Here’s the news release with a link to the trailer:

A powerful film directed by Emmy Award winner Janet Grillo (Autism: The Musical), FLY AWAY narrates the story of Jeanne (Beth Broderick, Bonfire of the Vanities, Sabrina the Teenage Witch) and her autistic teenage daughter, Mandy (Ashley Rickards, One Tree Hill).  Jeanne has cared for Mandy since the day she was born, growing closer every day to a child who is charmingly offbeat one moment and nearly impossible to manage the next.  In the dog park, Jeanne encounters Tom (Greg Germann, Ally McBeal, Friends with Money), an easygoing and accepting neighbor who sparks a romantic interest, but she finds juggling Mandy’s care and her own career leaves little room for a new man.  As the pressures of work and her child’s needs increase, she must decide whether or not to enroll Mandy in a therapeutic residential facility.  Over the course of a few weeks, Jeanne is confronted with the most difficult decision a parent can make: to let go, allowing her child to grow, but also grow apart; or to hold on tight and fall together.

Statement from Director Janet Grillo, who won an Emmy for her film, “AUTISM THE MUSICAL” (which is awesome, BTW):

As the mother of a child with disabilities, I was immediately thrust into the challenge every parent must face at some point: meeting the needs of your child when it is at great cost to yourself.  Perhaps the very measure of love is what and how much we are willing to sacrifice.  Although parenting someone with Autism is particular, the primal drive to do the best for oneʼs child is universal.  FLY AWAY tells this story.

FLY AWAY is a personal film, derived from experience.  As I have journeyed with other parents of children with special needs, Iʼve witnessed great pain and extraordinary passion.  Iʼve also watched parents unable to place their children in full time therapeutic residences, when it was clearly needed.  While such placement is not best for all or even most children on the spectrum, it’s tragic when parents are too plagued with fear and guilt to make the choice when it is.  If FLY AWAY eases the pain of even one parentʼs torturous decision, or if it expands the heart of even one person untouched by Autism to accept our children and appreciate our struggles, it will have been well worth making.  The authenticity of our story can provide insight and hope.  Truth often does.

-Janet Grillo

Check out the trailer: http://flyawaymovie.com/the-film/.

Autism Awareness Month: Upcoming Event!

12 Apr

One of the most challenging aspects of having a child with autism is the isolation. Before and many years after my now-teenage daughter was diagnosed with PDD (Pervasive Developmental Disorder, the medical term for autism), I would feel uncomfortable around other parents and their children, excruciatingly aware of the differences between Paige and typical kids.  I am not the most social chick at the outset; anxiety over my daughter only amplified my introverted tendencies.

But that was then.  Five years ago, I started writing columns about Paige for The Dallas Morning News.  The overwhelming response (a lady in Germany emailed me to thank me after one piece hit the web!) gradually lured me out of my shell.  And the support of friends, teachers, colleagues, and even strangers has helped me immeasurably, too.  Which in turn helps Paige.

In that spirit, I would encourage any parents with children on the spectrum to check out an event my friend and More than Mothers contributor Leigh Attaway Wilcox is co-chairing.  Her son, Ethan, has Asperger’s, and Leigh is a tireless advocate on his behalf.  She inspires me in countless ways.

Here are the details:

In honor of Autism Awareness Month – April 2011
The Autism Trust USA
Warrior Parents of Dallas
& the National Autism Association of North Texas
Warmly Welcome:
Dr. Andrew Wakefield
&
Rupert Isaacson & Kristin Neff
For a FREE Presentation and Book Signing on
April 28th, 2011 at 7pm
Angelika Film Center
7205 Bishop Road, Suite E6, Plano, TX, 75024

Learn more about the ongoing outreach and offerings of the National Autism Association of North Texas (NAA-NT) & Warrior Parents of Dallas & discover how Pay It Forward will work as a catalyst to forward progress for The Autism Trust USA.

Dr. Wakefield will discuss the Primate Project and Rupert Isaacson and Kristin Neff will share about life with their son, Rowan, who lives with an Autism Spectrum Disorder.

For more visit theautismtrust.com or naa-nt.org. For updates, look for our event page on Facebook by clicking here.

Autism Awareness Month, Part I: What is Autism?

5 Apr

Eleven years ago this month, my daughter, Paige, was diagnosed with autism or Pervasive Developmental Disorder (PDD), the preferred medical term back then.  I’ll never forget the day at the Cook Children’s neurology office.  My mother had flown in from California for the appointment, which we’d waited six months to get.  My husband took off from work.  The grim-faced doctor made autism sound like a death sentence.  I cried so hard and so much it looked like I’d been to a funeral, even days afterward.

It felt like one, too.  What the doctor didn’t tell us—couldn’t have, of course—is that autism would become just another fact in our life, like Paige’s blue eyes or that I write for a living.  No one could have known that autism would define us in some ways—from the schools Paige would attend to our constant search for appropriate therapies and services—and not in others (we go places, have friends, live life!).

Along this journey, which I plan to discuss in detail during this month’s posts, I have been asked the most fundamental of questions countless times: what is autism?  Here is how Autism Speaks defines this condition that 1 in 110 American children will be diagnosed with this year.  (For more, visit www.autismspeaks.org.):

What is Autism?

Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).  The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.  Many parents and professionals refer to this group as Autism Spectrum Disorders.

How common is Autism?

Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.  An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism.  Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually.

What causes Autism?

The simple answer is we don’t know.  The vast majority of cases of autism are idiopathic, which means the cause is unknown.

The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes.  The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors.  Timing of exposure during the child’s development (before, during or after birth) may also play a role in the development or final presentation of the disorder.

There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain.  Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system.  There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism.  Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.

Coming Home

15 Mar

As a mother of a 15-year-old daughter with life-altering autism (she doesn’t talk; can’t stay home by herself; etc.), I felt conflicting emotions reading this terrific story in the March 11 Wall Street Journal. Many children (many of whom are adults according to the calendar, if not functional level) are finally going back to NYC thanks to an abundance of new programs to assist families.

The reunions themselves as well as the additional help make me feel so very happy.

I feel guilty, though, thinking how fortunate my family is by contrast. North Texas has given us so many opportunities for Paige, from therapeutic horseback riding lessons in Keller to cutting-edge behavioral therapies to school professionals who go the extra mile for our girl.

Still, I wanted to share this piece with you because it offers a little more insight into the lives of families with disabled kids.

To read the full Wall Street Journal article, click here.

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