Ways to help a family dealing with autism

(great article from Autism Speaks)
 
Elaine Hall

Elaine Hall

Author, Advocate, Mother of a teen with autism

Posted: August 17, 2010 11:20 AM

We’ve all heard the news: one in 91 children are now being diagnosed with autism in the United States alone. This is staggering. Today, almost everyone knows someone with autism. And yet, with all the talk about cures, causes and concerns, there is rarely any information on how we can support a family with this diagnosis. All too often, because folks don’t know what to do, they do nothing! Even to the extent of avoiding the family out of fear, or just out of not knowing what to do or say. In this post, I hope to show how simple acts of kindness can make a world of difference for families who have children with autism.

I will highlight seven easy, free (or inexpensive) ways that you can do to help:

1.) Let’s start with the easiest: On the way to your weekly or daily trip to the grocery store, ask if there is anything you can pick up for their family.

Pick up some eggs, or a carton of milk and drop it by. If they insist on paying you back, accept. Then, the next time you ask them if there is anything they need, more than likely, they will feel okay to say, “yes, please.”

Why? Because often taking a child with autism to a grocery store can be overwhelming. I can remember when taking my son, Neal, anywhere was difficult. More often than not, when we drove in the car, Neal would have a temper tantrum in his car seat. He would kick the seat in front of him, wailing for me to stop. I would pull over, stop the car and help him calm down.

Taking him grocery shopping had it’s own challenges. On bad days, Neal would have a tantrum while I was shopping. The moment it started, I had to pull him out of the cart, then leave the cart — groceries and all — in the middle of an aisle while a kind and bewildered store employee helped me carry a kicking, screaming Neal to the car. I would tell Neal directly, okay, I guess you’re not ready to go to the grocery store, yet. And we would wait a few days before returning. In those days, many of our meals had to be take-out.

Today, when I speak at conferences and someone asks how they can help a family whose child has autism, the first thing I say, “Ask what you can pick up at the grocery store for them.”

2.) Learn the facts about autism, but don’t give advice.

Parents who have a child recently diagnosed with autism are often overwhelmed with “to dos.” Today there is lots of information to help unravel the intricacies of therapies, schools and protocols. There are special needs advocates, websites, books, journals — you name it, it’s out there. What families need more than additional information or advice is someone to listen to them — they need a friend. A friend who understands what they are going through and doesn’t judge, condemn or give advice.

I am blessed with wonderful friends. Two of my closest friends Rebecca and Nick, and Vida and Leven, lived walking distance from Neal and me. We got together as much as possible. In the beginning, we had dinners together, strolled our kids to the park, debated whether it’s better to use disposable diapers or to be more earth-friendly and stick to cloth. They were there for me when I got Neal’s diagnosis and supported me in every way they could. They listened to my challenges, but only gave advice when asked.

It’s okay to offer a magazine article, a blog post, etc., but only give advice if you are asked!

3.) Take the sibling of the child who has special needs out for a special treat.
When there is a child who has severe needs, the typically developing sibling may often feel left out, or become a “little adult” — over-responsible, learning at a young age to put their own needs aside. This can cause resentment or denial of their own feelings. Parents juggling their own schedules and therapies for the child with autism may not have the time or space to give what they would like to the sibling. This is where friends and family can be a tremendous support in a very easy way.

Ask if the sibling wants to join your kids for a movie, an ice cream, an outing. Or if you don’t have kids, find out what interests the sibling, and take them to a ball game, a dance concert or just a walk around the block.

And speaking of walks — this is really number three and a half — but if the family with autism has a dog, offer to take their dog for a walk. That’s one more thing they don’t have to think about. Siblings of a brother or sister with autism have a different life than their typically developing peers. Holly Robinson Peete and her daughter Ryan wrote a beautiful children’s book, “My Brother Charlie,” that reveals a sister’s experience with her twin autistic brother. Often, as the siblings mature, they see how their brother/sister has enriched their own lives. You can be the person who makes a difference in their young life.

4. ) Give the parents or single parent a night out.

Okay, this is a bit more challenging. You must be willing to leave your comfort zone to be available to be with a child who processes the world differently. Learn about autism. Learn about joining a child’s world. In my book, “Now I See the Moon,” I discuss ways to join a child with autism. I have found children, teens and adults with autism to be the most interesting and extraordinary people I have ever had the privilege to know, and yet I never would have known them had I not had been gifted with my own nonverbal autistic son. Spending time with a child who has autism can change the way you experience the world!

Start with just a half hour at a time. Or if you have the financial means, offer to pay for childcare once a month — or even once a year! With the divorce rate of parents with children who have autism at 80 percent (almost twice the national average) you can be the one who helps save a marriage. Or the one that helps a single mom or dad meet Mr. or Mrs. “Right!”

5.) Okay, you’re not good with kids. But you’re organized, and like to help others be the same. Offer to help with housework or organize their office.

Come over, wash their dishes, take out the trash — any small act can be so helpful. Or again, if you have the financial means, pay for someone to help clean their house. Parents with children who have special needs have to compromise on something and sometimes that’s household chores. I remember realizing that to be an A+ parent, friend and daughter to my aging parents, I had to resolve to being a B- housekeeper.

6.) Bring over a cooked meal.

I remember the evening when a neighbor brought me over an amazing cooked brisket. I had just moved back into my town house. I had boxes everywhere. Neal was having a difficult time adjusting, and the thought of cooking a meal felt overwhelming. It was a simple task for my neighbor (she just made an extra one the day she was cooking hers) but eight years later I can still taste and smell that brisket and remember her thoughtfulness!

If you are real ambitious, start a food bank with your neighbors, or synagogue or church group. Even having someone bring a cooked meal over once a month can make all the difference for a stressed recently diagnosed family with autism.

7.) Ask your high school child to volunteer their time weekly to play with the child who has autism.

Many schools now offer community service hours for teens who volunteer in the community: programs like Friendship Circle, Best Buddies and Circle of Friends. Friendship Circle pairs kids with special needs to go into the home and play with the child two hours a week. At The Miracle Project and Vista Del Mar, we have created the Inspired Teens group, a group of middle school and high school teens who raise awareness, funds and volunteer in our theater programs. These teens also become friends with our teens. They all say how their lives have been enriched by becoming friends with autistic teens.

Above all, the easiest and yet the most challenging thing that you can do with a family who has autism, is open your heart and mind with unconditional love and support. Take away judging a child as having “bad behavior” or a parent as being “overly permissive.” And instead if you see a parent having a rough day with their child, ask “how can I help?” Or, as Lori Guthrie’s neighbor said one day after witnessing a melt down, “Don’t worry about it. I didn’t notice a thing.”

Yes, we know how busy you are. But you may be amazed at how taking some time to help others can help you gain perspective and see your own life’s challenges reduced to bupkis. More than anything, however, your life will be enriched by being of service and from entering the miraculous world of autism.

Elaine Hall “Coach E”
Founder of The Miracle Project.
Author: “Now I See the Moon: a mother, a son, a miracle”

What happens when I’m gone?

Starting School

(This poem helped me tremendously when Tony was little… just thought I’d pass it on)

“The letter came from school today, (my child will start, you know).  There are forms to fill, a lunch to make.. I’ll stand and watch him go.

I didn’t plan on this so soon.. ride the bus at three?  Who will drive him, will she care.. if he cries because he’s leaving me?

Who will get him off the bus.. and wipe away his tears… Will the teacher comfort and reassure and hug away his fears?

What will the other children say.. when his special needs they see?  Will they include him in their play or ignore his anxious plea?

Oh Lord, please watch this special child.. and help me to let go; Ease my fears and anxiousness.. you know I love him so.”

~ Author Unknown

****  Whether your special needs child is starting preschool, Kindergarten, or is starting 12th grade, like mine… I think this poem applies.  Tony will be a Senior in just a few weeks… and I still tear up when I read this.

Becki

You Never Know

(One of my favorite poems,  just thought I’d share)

You never know when someone may catch a dream from you.

You never know when a little word or something you may do

May open up the windows of a mind that seeks the light…

The way you live may not matter at all, but you never know… it might.

And just in case it could be that another’s life, through you,

Might possibly change for the better with a broader and brighter view,

It seems it might be worth a try at pointing the way to the right…

Of course, it may not matter at all…

But then again, it might.

– Author Unknown

Mom’s Therapy

Time is flying!  I haven’t had time to update you all in so long – I apologize.  I’ve actually had people email me privately to make sure we’re ok.  Thank you all for your support.  It really touches my heart.

Summer school is going better than I imagined.  My business is growing and I’ve met some wonderful people who’ve joined my crusade of helping others.  We are continuing our daily rides —- burning through the gas —- and there’s been a few days that we’ve almost gotten caught in the rain!  (nothing makes Tony laugh harder than when it starts to rain and we have to pull over to put the top up)  That said, the rides at dusk have been absolutely gorgeous.  It’s become as much of a therapy session for us as it is for Tony. 

Last weekend, I got away alone for some more ‘therapy’.  I posted this on my facebook page: “College reunion this weekend! Some things just get better with time… love to slip back in time and “forget about life for awhile”. can’t wait to see everyone again!!!”   Well…  I wasn’t disappointed.  I had an incredible time, even lost my voice from all the talking and laughing.  Dave was home with the boys and did a wonderful job.  I didn’t even have to check in (except for texts cuz I missed everyone).  It was truly a mental break for me.  A lot of my friends read this blog, so I want to take this moment to say thank you for allowing me to relax.  We didn’t talk much about autism or therapies or stress or hard times.  We just reminisced, talked and talked, laughed until we couldn’t breath remembering how things were at UMD back in the 80’s.  Our friend, Larry, came in all the way from Hong Kong and we even had a special guest this year —- Ann, from Florida.  We hadn’t seen Ann in 20 years, but the minute we did, it was as if no time had passed at all…   there was a lot of love in the room and a lot of  joy as we reconnected with those who had a part in forming who we became.

Granted we’ve all aged, but when we get together that doesn’t matter.  We look at each other and see an old friend.  These people helped me that weekend more than they’ll ever know.  For a short weekend, I was just ‘me’.  I wasn’t someone’s Mom, or even Tony’s Mom, or the autism blogger, or the business builder… I was just me.  And it was really nice to get to know me again.

“Some people come into our lives and quickly go.   Others stay a while, make footprints on our hearts and we are never, ever the same.” 

Here’s to you  — all you from “GOOF 25”!   Thanks again for the belly laughs.