Tag Archives: autistic

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!

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MASK Syndrome: Signs and Symptoms

7 Jun

Around Mother’s Day, I came across the piece via a Facebook friend’s post.  Boy, did the arrow hit its mark!  But, you know, I think this may apply to most any mom, not just those of us with children on the Autism Spectrum.  What I took from the writings of Lisa Barrett Mann, Kansas-based therapist and author, is confirmation that I’m doing two things right:  I have respite care (which gives me time alone or time alone with my husband for a couple of hours each week) and a great support system of friends, Paige’s teachers and more.

Does any of this ring true to you?

Have you noticed any of these symptoms recently:

• Irritability?
• Hyper-vigilance?
• Repetitive speech?
• Avoidance of social interaction?
• Disregard for personal appearance and social niceties?

I’m not talking about your child with Asperger’s or autism.  I’m talking about you.  And me.  And a common occurrence I’m calling MASK (Mothers of Autism Spectrum Kids) Syndrome.  It occurs when a mom spends so much of her waking life focusing on her child’s special needs and fighting for his interests that, somewhere along the way, she starts to lose touch with the person she used to be.  How ironic it is that, in fighting autism, many of us start to become a little more autistic ourselves.

Irritability.  Are you suffering from lack of sleep?  Worried about your child’s future?  Worried about your family’s finances?  Ever find yourself snapping at your kids for interrupting you, then feeling guilty afterwards for discouraging this social interaction?

Hyper-vigilance.  Do you scan each room you enter for things that might set off a meltdown in your child, such as unusual smells or loud noises?  Do you find yourself doing so even when he isn’t with you?  For that matter, after avoiding those things for so long, do you find that they now irritate you, too?

Avoidance of social interaction.  Do you choose the self-serve lane at the supermarket and the ATM at the bank because doing things by yourself is just easier?  Do you keep meaning to pick up the phone and call a friend, but find yourself too busy or distracted?

Disregard for personal appearance and social niceties.  Have the cute hairdos and perky outfits been replaced by ponytails and sweats?  Do you ever find yourself so rushed and distracted that it’s just annoying when a cashier or neighbor tries to make chitchat with you about the weather?

If you answered “yes” to several of these questions, you too may be suffering from MASK Syndrome.

Interventions for MASK Syndrome

While there’s no known cure for MASK Syndrome, there ARE interventions that can lessen the symptoms and help moms to live happier, more satisfying lives.  And by implementing these interventions, you’ll be setting a great example for your kids by giving priority to social interaction and other activities you need to maintain your health and well-being.

In his new book Staying in the Game: Providing Social Opportunities for Children and Adolescents with Autism Spectrum Disorders and Other Developmental Disabilities, psychologist Jim Loomis emphasizes that children on the spectrum need lots of social interaction built into their daily lives – a variety of social opportunities where they can successfully practice and generalize their interpersonal skills.  I submit that moms need at least as much social interaction – to maintain our social skills and our mental health.  Let’s take Jim’s itinerary for kids with autism spectrum disorders (ASDs) and translate it into something that makes sense for moms with MASK.

Lunch bunch 3-4 times per week.  Most of us live hectic lives, and working through lunch can easily become habit.  Make a commitment to yourself that at least three days a week, you’re going to operate as a social human being.  Go over to the food court with your coworkers, or brown bag it and catch up on the gossip in the lunchroom.  If you’re at home with little ones and you share the lunch table with preschoolers, that may count as social time for them – but not for you.  You need interaction with folks who are interested in topics beyond Blues Clues and Thomas the Train.  So after the dishwasher is loaded, put everybody down to nap or stick in a DVD for 20 minutes, and pick up the phone and call your best friend or sister, and give yourself a dose a grownup time.  (Just don’t spend the 20 minutes talking about the kids!)

One play date every other week.  The great thing about play dates for moms is that you don’t have to referee them – you just have to find time for them!  Sit down with your calendar, get on the phone, and schedule time to spend with friends, at least every couple of weeks.  It doesn’t have to be anything elaborate.  Go together for manicures or a trip to Target, followed by lattés, while Dad watches the kids.  But make sure you schedule in play dates with Dad occasionally, too.  If you can’t find a sitter, trade off watching the kids with another couple who has a child on the spectrum – most, I’ve found, are happy to make such a deal.

Membership in two clubs or organizations.  If you don’t already belong to a group for parents of kids with ASDs, you’re missing out on great social and emotional support.  But also remember that you had interests before you became a harried mom.  Whether it’s decorating or reading murder mysteries, we all need some sort of pleasant diversion, and friendly folks to share it with.  If you’re able to join a local support group and club, great!  But if not, there is a plethora of online discussion groups about just about any interest you can imagine.  A quick search on groups.yahoo.com is often all you need to get started.

If you feel guilty about the idea of trying to plan time and activities apart from your kids, don’t!  How can we teach our kids that socialization is important, healthy, and worthwhile, if we hardly ever take time for it ourselves?  So get pick up the phone and plan time for some fun with a friend.  If you won’t do it for yourself, do it for your child.

P.S. While MASK Syndrome to date has been found to be most prevalent among Moms, many dads are susceptible to similar syndromes.  So, Dads, don’t feel left out, but take heed.

Lisa Barrett Mann, M.S.Ed., has a private practice in Overland Park, KS, focusing on social skills training and cognitive-behavioral interventions for children and teens with ASDs (www.AspergersInterventions.com).  She is also the mother of a 13-year-old with AS and the author of More Than Little Professors: Children with Asperger Syndrome: In Their Own Words.

Summer Fun for ASD Kids!

31 May

Summer scares me. With good reason.

Last summer ranks as one of the most difficult for Paige, my now-15-year-old daughter with autism.  She was restless, moody, and generally miserable.  As her mother, I was restless, moody, and generally miserable, too!  Our tough season had many benefits—not the least of which was that we pushed for her to qualify for Medicaid (which she did) and funds for respite care (another yes).  We also switched schools, one of the few decisions I’ve made as a mom that has no down sides.  It’s all good!  Seriously!!

If you’re dreading the summer with your special-needs kid, consider reaching out to your local Easter Seals or school district for a list of camps and activities in your area.  Your kid probably could do with a dose of stimulation—and you need the break.

Here’s one program I love!  The following is an email I received over the weekend from the Dallas Museum of Art.  (I think this is such a fabulous program; the folks there are fantastic.)

Summer Art Camp for Children with Autism at the DMA – reduced price and expanded age range!

Due to the high number of adults who are interested in helping with the camp, we have decided to expand the camp’s age range from ages 9-12 to ages 7-12 since each child will be able to have more personal attention.  The summer art camp is specifically designed for children on the Autism Spectrum.  Stacey Callaway, the autism specialist that we work with to develop Autism Awareness Family Celebrations, and I will co-teach the camp for children ages 7-12.  The camp is a four day camp and will explore works of art in the Museum’s collection, integrate multisensory experiences, and have a wide-range of materials in the studio for art-making.  We will have several specially-trained volunteers on hand to assist with the camp.

Camp description:

hands-on art for children with autism
ages 7-12
Interact with works of art in the galleries, engage in a variety of hands-on experiences, and explore art processes to create a masterpiece in the studio during this four-day camp designed specifically for children with autism spectrum disorders. Taught collaboratively with an autism specialist and Museum staff, this camp will offer various media experiences and will focus on themes in works of art from many cultures. Visual picture schedules will be used to integrate art, music, social interaction, sensory exploration, and movement.
Please note this is a four day camp.

Cost: Members was $140, now $100! Nonmembers was $152, now $112!
Monday–Thursday, June 20–23, 1:00–4:00 p.m.
Teachers: Amanda Blake and Stacey Callaway

To register for this camp with the new price, please contact JC Bigornia at 214-922-1822 or JBigornia@DallasMuseumofArt.org
Website with general summer camp info (please note that the new price and age group is not listed in the brochure):
http://www.dm-art.org/Family/SummerCamps/index.htm

Also: the Dallas Museum of Art will be hosting a free event for children on the autism spectrum and their families on Saturday, June 18. The Center for Creative Connections in the Museum will open two hours early for families to enjoy the space and to participate in a variety of activities. (I’ve been to one of these and they are excellent!)

Pre-registration for the event is required. For more info, visit www.dm-art.org.

Arlington Woman Named “America’s Most Deserving Mom”

18 May

Check out the link below for the story of Carol Daley, warrior mom of an autistic child.  She just won big for being a tireless advocate for her son’s health!

http://dfw.cbslocal.com/2011/05/17/arlington-mom-wins-americas-most-deserving-mom-contest/

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, 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.

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