BY DEANNA PICON
Prominent national landmarks will light up in blue, awareness events will be held throughout the country and major fundraising campaigns will be conducted as America recognizes Autism Awareness Month.
Hundreds of organizations and thousands of people will bring much needed attention to the key issues and topics surrounding autism, as well as the plight of the millions of people it affects.
However, in the midst of all of these diverse activities, it’s also important to examine autism’s impact on those who seldom receive attention to their unique situation – the parents of individuals with autism.
The Centers for Disease Control and Prevention says that 1 in 68 American children has an autism spectrum disorder (ASD). However, a recent parent survey by the organization shows the number may actually be higher – 1 in 45 children. Whatever the number, behind these startling statistics are shocked, overwhelmed and unprepared parents, whose lives have been forever changed by an autism diagnosis.
When a diagnosis of autism is confirmed, it’s like a hurricane centered on the child. There is a huge amount of activity and everything is swept away – only the focus on the child remains.
Obviously, a young girl or boy with special needs deserves to have special attention. But this immediate focus often becomes permanent; nobody thinks of anyone or anything else, now or in the long term.
Most of the time, the parents are offered plenty of support and resources for their child, but none for themselves. Instead they are expected to immediately process and accept what is happening and to “stay strong” for their son or daughter. Few people ever seem to realize that parents in this situation have special needs too.
During Autism Awareness Month, it’s essential to shine a spotlight on these “hidden heroes” who bravely face autism and all the overwhelming challenges and huge responsibilities that accompany it.
These parents may be your best friend, your cousin, your neighbor or co-worker. Most are weighed down by the guilt of feeling like they’re not doing enough for their child, financial strain from the costs of seeking proper care, and constant worry that their marriage or family is under pressure and struggling to carry on.
Parents of autistic and special needs children deserve respect and recognition for many reasons, including the sheer guts it takes to stay dedicated to this challenge.
Every day, parents around the world get up, work hard and provide for their families. However, special needs parents must also put on an invisible armor of protection as they tread out into their communities, for they know what awaits them. These parents have to constantly shield themselves and their families from blatant stares and critical remarks of people who look and wonder why they can’t control their young or adult children.
There are many who fail to realize that it’s hard enough raising a special needs child without the whole world staring, passing judgements and making comments. It will be a wonderful day when people understand that an autistic child or adult can’t help exhibiting the traits of autism any more than a child with one leg can help limping.
These parents have to turn the other cheek and take the high road when they hear people laughing, whispering or saying hurtful things about their child’s inappropriate behavior. But over time, to their credit, they learn how to develop a thick skin, take a deep breath and resist the urge to punch everyone who looks at their kid funny. That’s character building in action!
As with most parents, special needs parents just want to give their children the best lives possible. But often times, there’s a mountain of obstacles standing in their path. These parents have to strongly advocate for their kids to make sure all appropriate services are provided to their children. They battle with school bureaucracies to ensure their son or daughter receives a fair and appropriate education. They fight with insurance companies to pay for medical necessities for their child.
Navigating everything successfully can be a full-time job, not to mention difficult and aggravating at times. But yet they march forward and don’t give up.
All parents who stay and accept the challenges of raising a child with autism or special needs deserve a medal for courage. They have faced up to their responsibilities even though it meant braving unchartered territory. Even though they didn’t know what was ahead, they took a deep breath and walked on.
So, in addition to all of the activities and obligations of any other parent, they have to handle therapists’ appointments, medical appointments, extra hours for meeting their child’s physical needs, research into educational programs… the list goes on and on.
HONORING EVERYDAY HEROES
Here’s What You Can Do
Family, friends, and neighbors can apply these simple tips to make a huge difference in the lives of special needs parents:
1 Give a well-deserved break. Managing all aspects of a child’s daily living – including personal needs, school activities, therapy and medical appointments – can leave parents little personal time. Offer to watch their son or daughter at home or take him/her to a park, museum or movie for a few hours. This will allow parents to do something they enjoy but never get a chance to do. Best of all, they’ll know their child is safe and well-cared for and there are no child care costs.
2 Run an errand. Pick up some groceries for them when you shop or drop off some clothes at the dry cleaners. It’s one less, time-consuming task on their long “To Do” List.
3 Share household tasks. Wash some dishes, do a load of laundry or help clean the child’s room. An extra pair of hands is always welcome and most definitely valued.
4 Bring a dish. A nice dinner or even a take-out meal can make everyone feel special and appreciated. Gift cards for a local restaurant can be a lovely surprise.
5 Plan a fun get-together. Schedule some time, possibly when the kids are in school, to go out and have some fun. Reconnect. Go shopping or have a quick bite. It will do wonders for parents to unload the weight of their responsibilities, even for an hour.
6 Listen without judgement. Bring over some coffee or tea, sit down and just listen. Go for a walk in the park and catch up with each other. Allow them to laugh, cry, vent and blow off some steam. No one expects you to solve their problems or even offer solutions. A shoulder to lean on works just fine.
7 Keep in touch. Special needs parents often feel alone and isolated, so it’s really beneficial to let them know you’re there, if they need you. Send a greeting card, text or email and or call to just say “Hello.”
8 Acknowledge their dedication. Tell parents they’re doing a great job. Express your support. Day in and day out, they’re taking care of their special needs child without as much as a “Thank You.” Words of encouragement and praise are a great morale booster. These kind of simple but valuable good deeds don’t have to be limited to friends and family. Work colleagues can express their admiration for how well a special needs co-worker balances work and family responsibilities by showing their appreciation:
9 Surprise them. Little gestures can bring a big smile to the special needs parent in your office. Buy a cup of coffee or tea with a donut or bagel and place it on their desk in the morning. What a great way to start their day!
10 Treat them. Celebrate “Autism Awareness Day” with your coworker, just as you would his/her birthday. Buy a small cake or some cupcakes or take the special needs parent out for a nice lunch. Teachers, therapists and school administrators can also recognize the wonderful special needs parents in their school.
11 Make a small gift. Students can make a “Great Autism Parent” card for their parents or a creative photo frame using Popsicle sticks. A personal gift from their child can warm a parent’s heart for years to come.
12 School recognition. Parents can be acknowledged for their dedication and hard work at a monthly PTA meeting during Autism Awareness Month.
13 Teacher feedback. Teachers and therapists can write a little note in their child’s notebook about what a great partner they are in their child’s education. This can bring a smile to a stressed out parent at the end of a long workday.
They do the best they can, often putting their own personal and professional needs on the back burner, out of love and devotion to their child.
Because of their determination, their child will have a better life. That’s something worth patting them on the back about.
Our country has a word to describe people who live up and face up to challenges – we call them heroes. And that’s who these honorable men and women are – everyday heroes.
It’s wonderful to honor and recognize the amazing autism and special needs parents in your life during Autism Awareness Month. But keep in mind, these simple acts of kindness don’t have to be reserved for special days or months. Parenting is a 24/7, 365 day job for these parents, so anything you can do to help them during the year is much appreciated.
As Charles Dickens said in the classic story A Christmas Carol, we can celebrate Christmas in our hearts all the year ‘round, not just on one day or for a season. The spirit of charity and empathy that we feel at special holidays can be practiced anytime, anywhere, and will always help make the world a better place.•
ABOUT THE AUTHOR:
Deanna Picon is the founder of Your Autism Coach, LLC, which provides personalized guidance, comprehensive support programs and seminars for parents of exceptional children. Her personal mission is to empower parents as they advocate for their children, while balancing productive work and family lives. She received her BA in psychology and BA in broadcast journalism from Syracuse University. Deanna is a parent of a non-verbal, young man with autism. She is the author of The Autism Parents’ Guide to Reclaiming Your Life. Deanna can be reached at www.YourAutismCoach.com or @yourautismcoach.
