Posts Tagged ‘support’

Instantaneous McDonald’s support group

One day during my kids’ spring break, my daughter and I went to Meadowbrooke Gourds.  (I’m letting you know this because it is an awesome place and I want all of you to know about it.)On our way home, we stopped at McDonald’s for lunch.

As we were eating I noticed that people were watching this man who was not “normal” and acting a little wierd.

I looked over.  It was a young man who was obviously on the autism spectrum.  He was verbalizing, flapping, pacing… funny, I hadn’t even noticed until I realized that other people were staring.

Funny what I get used to, I guess.

I said something to my daughter, and she looked over.  We agreed that the man had autism.  I started watching him, not out of “rudeness” but out of concern.  I suppose my mom instincts kicked in.

A woman in line called to the man and instructed him not to beat on his chest.  He stopped.  I knew he was not alone, so my daughter and I went back to our lunch.

As we were leaving the restaurant, I stopped by the man’s table.  Turned out he was  22 and was out with his grandmother.  I explained to his grandmother that I had been watching him out of concern due to my being a mom of two boys on the spectrum.

She gave me a big hug.  She said, “We all have to stick together!”  We talked for a few minutes until the man decided to walk out of the McDonald’s on his own (typical… for us, at least!).   She ran after him and my daughter and I went out to our van.

We were buckling our seatbelts and I heard a honk.  As the grandmother was driving away, she had looked for me and honked in support when she saw my autism awareness sticker.  I waved and noticed that she had a sticker, too.

I really hope I see her again.  Our walk for autism is coming up on April 14th.  Since she’s in the area, maybe she’ll be there.

I was grateful for our encounter.  I have hope, because the young man reminded me of my own son.  May we all experience love and support in the unlikeliest places.

Challenger day

My sons play Challenger baseball.  Challenger is part of the Little League International, and is all about giving kids with special needs a chance to play baseball.

Our games are a little different:

  • The kids get to swing the bat until they hit the ball… it can take 12 times or more! They don’t give up, and keep trying until they hit the ball (with our without help).  It’s a great life lesson.
  • The teams don’t keep score, they just play.
  • Everyone cheers for both teams.

We had “Challenger Day” recently.  That’s the day when the Little League players come to cheer for the Challengers, and get autographs afterward.  And cheer they did… loudly and proudly!  I was impressed that they even found out each Challenger’s name so that they could cheer them on individually when they are at bat.

I enjoyed seeing so many kids asking my son and his teammates, “May I please have your autograph?”  Of course they were happy to sign! One girl was shy and didn’t ask.  She simply gave her paper and pen to Philip.  He said, “Do you mean to say, “May you have my autograph?'”  She smiled and nodded.  Philip smiled and signed.  Hooray for politeness and using words!

This year there were cheerleaders from a local high school who volunteered to cheer on the kids. They too asked for autographs.  Philip was really happy about that! Sadly, my oldest son missed the day due to work.  He’ll be bummed when he sees pictures of his brother with cheerleaders.

As we left the field, Little League parents were making sure that all the kids knew they played well.  “Good job!”

It was a great self-esteem booster for the Challengers, and a wonderful way for the Little League players to  practice acceptance.  Kids showing compassion and feeling valued gives me hope!

What would you do?

I was at a kiosk getting photos developed at a Walmart when the store manager informed me that if my son kept “doing that” we’d have to leave the store.

My question: “Doing what?”

I thought that my son was around the corner looking at movies. Instead, he was climbing up on the shelves and riding exercise bikes. He was being unsafe.

Apparently, a Walmart  “associate” witnessed this, and instead of approaching me, went and got the manager.  The associate pointed me (and my husband, who was nearby) out to the manager, who gave me this ultimatum.

The manager informed me that my son had been on the bikes for several minutes, and seemed to think that I knew about this.  I did not.

Immediately, I went to get my son.  I agreed that he was being unsafe, and assured the manager that if he kept climbing the shelves we would of course leave the store.

Then I asked if the associate or manager had personally approached my son and asked him to get down.

Of course not.

I asked the manager if the associate had approached my husband, since he hadn’t approached me and he obviously knew we were the parents.

Nope.

Then I asked why the associate didn’t approach us rather than going for the manager to get us kicked out of the store.

Silence.

Thank you for shopping at Walmart.

I asked my aunt, who works at a different Walmart, what she thought.  She told me a story of how an associate told this boy to get off of the bikes, because he could fall and get hurt.

The mother, who was at the other end of the bike aisle,  yelled at the associate– “Don’t tell my son what to do!  He is my child… you have no right…” and demanded to talk to a manager.  The manager came out, heard the story, and reprimanded the associate.

My aunt thought that the associate in my case was probably afraid that if he approached my son or myself, he could lose his job.

Sad.

What happened to the village?  What happened to watching out for kids and each other?

I don’t know.

But I am grateful when others mention something to my kids, or at least to me, when they are being unsafe.

Once at a school event I looked up and  saw my son climbing the stacks of cafeteria tables and chairs.  I couldn’t get to  him through the crowd.  A fellow PTO mom saw him and got him down. Then she saw me in the back of the room, caught my eye, and apologized.

No apology necessary… thank you!

Once a stranger at a store saw my son run away from me and blocked the door.

Thank you again!

Having a child with special needs has taught me to appreciate so much more the value of the village.   Especially when I have more children than I do hands.

How do you feel about the “village”?

How to be a friend to an autism mom

On my local Autism Society listserve, a fellow mom shared the post about How to be a Friend to an Autism Mom. The author, Susan Walton, who also wrote the book Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism.  I will be getting  a copy soon!  In the meantime, enjoy Susan’s article.  Happy Mother’s Day!

How to be a Friend to An Autism Mom

Some find it can be tricky to know how to act when a friend’s child has autism. “It’s so hard to know what to say! How can I be a good friend? I seem to say the wrong thing every time!”

And then, some autism moms report a frustrating breakdown in communication, friendships that disintegrate, or wounds that they nurse in silence.

We all need some help because we need these friendships. Here’s some advice for everyone who is near and dear to a mom whose children have autism. Consider it a “friend’s guide,” or, if you take it to heart, the best mother’s day gift you can give.

Do NOT offer pity.

Nothing makes a girlfriend want to run off and take a shower (and then stay far, far away from the source of the filth) like genuine, heartfelt pity.

“You poor thing, I feel bad worrying about my (plumbing problems, child’s broken wrist, difficulties at work) when I think of you!”

Of course your friend has it rough. But pointing that out and covering her in “You have it so much worse than me” slime only serves to rub it in.

Do NOT attempt to provide inspiration.

Don’t tell her about the person you read about in the paper who performs on the piano or the family whose child is “completely recovered.” Whether it is savantism or cure (or any other amazing gift of good luck), the reality is that most people with autism will not develop skills that allow them to “triumph” over their challenges, and recovery is as unlikely as lightning. Try to imagine telling your friend whose house just went into foreclosure about the woman in the paper who won the lottery. Would that help?

For every instance of those rare things happening, there is a reporter waiting to rave about it and a further five people sending the article to your friend. You don’t need to be one of them. She may be struggling with her child’s potty training, sleeping problems, lack of speech, intense unhappiness or daily living skills. Her child might grow up to be challenged to play the radio for an audience without driving them crazy by changing the station every three seconds. Trust me when I say that she will not feel inspired by the teenager with autism who plays concert piano.

Do NOT give advice.

If the parent of a child with autism is in the market for information, there is a great deal to be had. Most of it is garbage. You may read about secretin, chelation, elimination diets, or lyme disease. And there is credible information like new research underway. But assume that your friend has access to the information that you have access to, because she does. Forcing her to express gratitude for the exciting news that a new snake oil has arrived on the scene, or having to debunk it for the benefit of someone who doesn’t really need it anyway is trying. Instead, be her respite from that part of her life.

Do (Please, please do) offer kindness and solidarity.

You may not know what this hardship feels like, but presumably you know what some hardship feels like. You want to strike a chord of “I know I can’t truly understand this, but I’m behind you all the way. You go, girl!”

DO (Please, please do) listen.

Tune in and find things to ask questions about as if you are paying attention. “Last time we talked you were working really hard on getting insurance to come across. Any luck?”

DO (Please, please do) stay put as a friend.

Maybe your kids don’t really like playing with her kids, but you can make them. Really, you can. You can insist. Eventually they will either find that they are enjoying it more than they thought they would, or it will be over. It is good for your kids to learn kindness and patience. It is good for her kids to play with your kids who don’t have autism. But only you can make it happen.

DO (Please, please do) be patient.

It is entirely possible that your friendship will seem different, especially during the early years after a diagnosis. Maybe all her new friends have kids with autism and you feel weird, out of place. Maybe she has a tendency to cry over coffee. Work through it. She needs you. And someday, when you need to find a specialist for your child, you will call her first because she is so darn plugged-in to the local medical community and you can trust any recommendation she makes.

Susan Walton is an adventure seeker and the Northern California mom of three children. She is the author of Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism. It also gives real-world advice to friends and family about being part of the fun. On sale now at Amazon and wherever books are sold. You can follow her on twitter at swalton47.

It takes a village

Not so “light” memories flood my over-analytical mind.

As I have shared, I am an ordained pastor, currently on family leave.  Right now I find it impossible to take good care of my family and be a minister of a congregation.

Sometimes I wonder if I could do both, if the church truly behaved like…well… the Church.

I accepted an invitation to speak at my church about the responsibility of the congregation to care for all of it’s children.  In my tradition, the church is a family.  As members, we vow to nurture one another, provide a community of love and forgiveness, and to pray for one another. We claim our identity as part of the “family of God,” the “Body of Christ, where no part is more important than another.”  We promise to support and  care for one another.

Sadly, in my experience, many times these promises have been empty. Many times, I’ve found more support outside of the church than inside.

Once, I pastored two small churches full time, while parenting a very active toddler.  Like many parents of children on the autism spectrum before the diagnosis, I knew something was “off.”  I didn’t know what it was, so I did the best I could.

Some well-meaning (?) church members  told me that if I was only a better mother, he would behave better. Others said that I should quit my job and be a stay-at-home mom he’d be more well-adjusted.  Someone advised me to spank him.  Another told me that I  wasn’t a good example for the other moms in the congregation. Being a first-time mom, I thought these people might be right.

So much for a community of nurturing, love, and forgiveness.

I was perplexed. I was trying my best, but was very frustrated. I inquired about taking a parenting class offered by the county government. But when I spoke to them, they asked me if I would like to teach the parenting class.

I began to realize that was doing the very best I could, and that there might be something else going on. I called early intervention, and eventually my son was diagnosed with autism.

How did my church respond?  It was mixed. There were some people who supported me wholeheartedly and said they’d be there for me and my family no matter what it took.  Others seemed to have an “I told you so” attitude, and I heard one person say, “Well, no wonder!”  Overall, I felt alone and scrutinized.

The emotional toll of the nay-sayers, the attackers, and accepting a diagnosis was too much.  I left.  My journey to healing and acceptance began.

We found a faith community where we are accepted and included.  When my stepson moved in, I was even more grateful for this community. My church is not perfect, but they really care and want to include all of us. They have done many things “right.” They are open to education and learning. They have helped me to lighten up a bit.

I now train faith-based and non-profit organizations to welcome and include people with special needs and their families. I hope they will learn from my story, good and bad, and be open to others who are different and actually celebrate those differences.  I hope that others will see the lighter side of autism and other differences, and the joy that comes from acceptance and welcome.

As one of my colleagues says, “Thanks for listening with your eyes.”

Wipa… Wipa good!

Sorry, I couldn’t resist!  Hubby and I went to an 80’s night fundraiser, and I danced my shoes off.  So I have 80’s music on the brain.

I became a “special needs parents examiner” for examiner.com.  When I started this freelance job, I sent out an informal survey to people in the disabilities field asking them what the best kept secrets are in my area for families and people with disabilities.  One of those things I learned about was WIPA.

Crack that “wip!”  “Wipa.. into shape…. shape it up…. wipa… wipa good…”  Ooops, sorry.

WIPA stands for Work Incentives Planning and Assistance. It is a program here in the USA for adults who receive SSI, or Supplemental Security Income, because…

1. They want to work.

2. They have a disability that impedes their working.

WIPA helps them obtain meaningful employment.

But let me back up for a minute to explain why else WIPA is incredibly important.

Tell me if this makes sense:

To receive SSI, which is based on personal income,  someone has to prove that he or she can’t work and  support himself or herself due to a disability.  For example…

  • a man’s autism keeps him from being able to function in the workplace.
  • Therefore, he can’t make a living wage, or enough income to support himself (food, shelter, etc.)
  • Since his disability keeps him from getting a viable job, he can qualify for SSI, to meet his basic needs.

But then, once he has proven that he can’t work due to his autism and begins to receive SSI income, he can indeed go to work.  Even though he has proven before that he is unable to work.

Did that make sense?

Yeah, I know.  Prove you can’t work, then once you do, find a job. It’s almost like, “April fool!” But not quite.

In my humble opinion, these laws just don’t make any sense.  As a parent of a soon-to-be adult, these laws are actually kind of scary.

So I’m glad that I found out about WIPA. Counselors with the WIPA program are trained to help navigate this territory .

Recently, I wrote an article called Working and disabled: it is possible . I explain this issue in more detail. What I found out was interesting, and it gives me hope for my boys–  if they do go on SSI someday, they can still have meaningful work.

Maybe we parents need to “crack that whip” on these laws…

Autism and Alleluias

Struggling with my Christian faith has been a constant in my life.  You may have noticed that I am an ordained pastor, and for now I am taking a break.  I am wondering what my future holds.

So now there is a book that I just am “chomping at the bit,” as they would say in my native Oklahoma, to read.  It’s called Autism & Alleluias by Kathleen Deyer Bolduc.

I was so happy to meet Kathleen at my church in 2007.  She spoke at a “Mother to Mother Luncheon” for moms and caregivers of people with autism.  I had read her book His Name Is Joel: Searching for God in a Son’s Disability, in which she wrote about her search for a Christian community for her family, including her son who has autism.  I cried, I laughed, I sobbed, and I prayed my way though this book.  I couldn’t believe it when I heard that she was going to come to my town, to my church, to speak to me and my friends and other moms.

I was privileged to take Kathleen and her sister to dinner that night.  The flames of my dream of being a writer and public speaker were fanned!

At the time, I was actually on staff at my church, teaching about spiritual gifts, helping people find places to serve, and advocating for people with disabilities– after all, they have gifts and skills, too.  At the same time, I was becoming frustrated with my job and what I perceived as lack of forward movement.  I was lonely in my spiritual journey. Talking with Kathleen helped me to see that I wasn’t alone in my “loneliness” in my faith community.  I have talked with other people, Muslim, Jewish, Christian, who feel the same thing in their communities.

I ended up quitting my job not long after the luncheon.  I had several reasons, but the greatest was my frustration and loneliness.  I began to really evaluate my faith and what I perceived God telling me to do next.  I pulled back from my involvement at church, and took time to rest.

Last fall, I scheduled a session with a spiritual director, who helped me discern my passion and my longing.  I began blogging not long afterward.

I know now that my passion is for inclusion of people of all different abilities, not only in faith communities, but in life.  No more shunning or pigeon holing or discounting the gifts and talents of all people.  People with autism and all differences deserve to live out their purposes and passions in supportive communities, and to know, without a doubt, that they are valuable and precious.

I have been told that I am a “prophet,” that I am a pioneer and ground breaker in the Christian community.  Sometimes I want to throw in the towel. I struggle to let go of anger, fear, and to keep from isolating myself and my family in order to “protect” us from the stereotypes and the “well meaning” comments of others.

That’s why I choose to write about the “lighter” side– to keep my eyes on the prize, to not give up hope.  It’s like therapy for me.  I hope that my readers will not find me too much like “Pollyanna” or think that I have an easy life.  I am simply writing about the “alleluias” in my life, to keep me and my family going and to hopefully give hope to other families, not matter what their faith may be.

Thanks for reading. Now, I’m off to find Kathleen’s newest book.

Childcare swap

Babysitter?  You’ve got to be kidding!

The costs have gone up since I was a kid, finding someone we trust to care for the kids is difficult for me and my husband, and just finding someone willing to watch autistic kids can be a challenge. Plus I don’t want to “burden” my friends with kids on the spectrum, either.

So what was I to do when I really really really wanted to take my hubby out for his birthday?

I made arrangements to do a childcare swap with another friend couple who has two kids, one on the spectrum.  (I figured we could both be “burdened” for one evening, LOL!)  My oldest went to grandmas, while my younger two had fun with Mr. and Mrs. D and kids.

There were a lot of preparations.  My friend made sure that her husband was off work so he’d be there to support.  Good call!  We went over the gfcf diet and I provided my son’s food and snacks for the evening. We brainstormed ways to keep my tomboy girly-girl occupied.  And then we just went for it.

It was great! My kids didn’t want to leave!  Their kids didn’t want my kids to leave! But unfortunately running away with hubby for the night was out of the question!

We returned the favor a couple of weeks later.  Same type of preparations regarding snacks, activities, etc.  We had a lot of fun.  I learned a lot about WWII submarines that night.  Never knew that my house  could have so many decks, and I learned to salute.  Things that kids can teach us! Sometimes autistic perseverations are very interesting!

I look forward to doing this again.  I’m already thinking of fun things to do.

This is just one of the reasons why I like my community. Autism is pretty common around here, and other parents are very supportive– even those who have kids who aren’t on the autism spectrum.  I am so glad we live here.