If hope is in short supply at your house, watch The Butterfly Circus. If you’re wondering why God is allowing your child and your family to struggle and live with pain, watch The Butterfly Circus. If your child with special needs is looking for a role model, watch The Butterfly Circus.

Starring Nick VujiciC & Eduardo Verastegui

This short film, part of the Doorpost Film Project, stars Nick Vujicic. An inspirational speaker, born without arms or legs, has turned down numerous film projects. But not this one. He accepted the lead part in this Depression era story. Once you watch it, you’ll understand. You’ll know why Eduardo Verastegui of Bella fame accepted a role, too, along with Doug Jones who you might have seen in Fantastic Four.

Watch & Discuss “The Butterfly Circus”

You can view the short film at www.thedoorpost.com. The film can also be used to stimulate discussion about differently-abled kids and adults. Here’s what Lynn Jackson of www.connectedfamilies.com says:

Nearly every film or show of substance has some Biblical idea (or not so Biblical idea) that can be thought about and discussed with children. Perhaps you’ve discovered this, or perhaps this is new to you. Either way, we found this film a great opportunity to discuss God’s grace, compassion for people, popularity, and a number of other themes the Bible speaks to.

Lynn Jackson’s Discussion Questions

In her most recent newsletter, Lynn provided discussion questions to use after viewing the film. Here are a few for younger children:

• What did the Butterfly Circus master do that was kind to people?
• How did each of them make people feel?
• Do you know anybody that feels sad because people are unkind to them?
• How could you be kind to that person?
• Why was it called the Butterfly Circus?

And here are a few for older kids:

• How do you think the two circus masters viewed life – what’s important, what does it mean to be successful? How did that affect how they treated people?
• How did Will discover his strengths and the courage to use them?
• What might Will say he was uniquely created to do?

You can find more parenting tips and sign up for Lynn’s newsletter at www.connectedfamilies.com.

What Did You Think of Butterfly Circus?

After you watch the film, come back and share your thoughts. Or if you discuss the film with your kids, share their insights.

Hoping to hear from you,
Jolene

In July, countless groups in the special needs community observed the twentieth anniversary of the Americans with Disabilities Act. The many commemorations made me think about my dad. By the time the act was passed, he’d been in a wheelchair 31 years. He’d spent many of those years unable to cross the street because of sidewalk curbs, unable to work because jobs weren’t modified for people like him back then, unable to enter the library or city hall because of steps. Though he lived for 6 years after the law’s passage, by then he was confined to a nursing home and rarely benefited from it.

Ben Mattlin and the Americans with Disabilities Act

Dad’s life could have been very different if the act had been in place when he was diagnosed with multiple sclerosis in 1959. But it wasn’t and there’s no sense wishing for what could have been. Besides many stories of lives changed because of the act do exist. Ben Mattlin’s is one of them.

Ben was born with spinal muscular atrophy, a condition which leaves him too weak to scratch an itch. In a recent NPR commentary, he told how the Americans with Disabilities Act did to change his life, and also what it didn’t do. You can read the article, print out a transcript, and listen to the audio version at Looking Back at 20 Years of Disability Rights.

Visit Ben’s Blog

To learn more about Ben, visit benmattlin.blogspot.com. These days, he’s running a series from his memoirs called Miracle Boy. In the August 7 installment, he describes how his mom and the school arrange to handle his bathroom needs as a seven-year-old. Not an easy task in the days before 504b plans. The story reminded me of Dad’s urinal, discreetly hidden in an old leather shaving bag, which we kids carried around for him when he could still get out and about.

Ahh, the good old days weren’t all that good after all. These days, the Americans with Disabilities Act days, are better. Though as Ben said, much remains to be done. And we’re the ones who have to do it.

Are you ready?
Jolene

About a month ago, I posted an entry about the longevity of grief. The number of readers who responded reinforced the wisdom shared by the grieving parents featured in the post. Grief takes a long time. Parents will be sad for a long time. It’s okay for them to be sad a long time, and it’s important for those surrounding parents to support them throughout the process.

Nancy Guthrie

Nancy Guthrie is an author who understands grieving the loss of a child. She and her husband lost two infants to a rare genetic disorder. She tells her story beautifully in Holding onto Hope: A Pathway through Suffering to the Heart of God. As the title indicates, she also addresses a topic people like to avoid – why God allows suffering.

Is the Church a Safe Place for Sad People?

Recently, I ran across an interview in which Guthrie talks about what churches can do to walk with sad people while they grieve. Here’s an excerpt:

Grieving people have four primary needs that the church has a key role in addressing:

1. They have intense sadness that is lonely and lingering that needs to be respected.
2. They have significant questions that need to be addressed in light of Scripture.
3. They have broken relationships that need to be healed and normalized.
4. They have a deep desire to discover some meaning and purpose in their loss.

While we make room for people to be sad, we want to walk with people in expectation that God will indeed do a work of healing in their lives so that they do not stay stuck in their sadness, but emerge from it strengthened in their confidence in God, deepened in their understanding of the Scriptures, and equipped to serve others.

Read the Entire Interview

The entire interview is available at www.theGospelCoalition.org. Because Guthrie is willing to confront issues many of us want to avoid, some of her thoughts may be difficult to face. But remember, Nancy Guthrie has been where you are. She and her husband lost two children.. They deal with grief daily. Every day, they choose to cling to their faith in God’s goodness despite the circumstances.

Hearing Jesus Speak Into Your Sorrow

I’m stepping out on a limb, recommending Guthrie’s latest book, Hearing Jesus Speak Into Your Sorrow, before reading it. But if it’s anything like her other books, it won’t disappoint. I will be reading it as part of the research for Different Dream Parenting: Raising a Child with Special Needs. And if all goes as planned, I’ll be attending Nancy Guthrie’s workshop at the conference mentioned at the beginning of the Guthrie interview.

If you’re familiar with Nancy Guthrie’s books, leave a comment about how they helped you cope with grief or reconcile your suffering and your faith.

Jolene

When our newborn son was in the hospital fighting for his life, I wanted his doctor to be a super hero. Someone who could knock out infections with one fell swoop. Someone who could miraculously hook up his innards to make ‘em work. Most of all, someone who could take away my baby’s pain and assure us that everything would be okay.

Doctors Are Human, Too

In my youth and ignorance, I expected too much of the doctors. Over the years I learned that doctors are human, just like me. Just like you. They can only do so much, and sometimes our expectations can overwhelm them. A recent article in the New York Times reminded me of that truth.

Physicians, Carve Out Time to Heal Thyselves

The article details health concerns for doctors – not things like heart attacks and high blood pressure – but infectious diseases they are in contact with because they’re constantly around sick people. You can read the whole article at the New York Times website.

The article will make you look at your child’s doctor a little differently. You’ll see a compassionate, caring human being, but no super hero. Between you and me and your doctor, that’s a very good thing.

Eyes wide open,
Jolene

Caring parents want their kids to get the most out of every school day. As parents, we do simple things to help our kids maximize each school day – be sure they get enough sleep, eat a good breakfast, have a quiet place to do homework, ask about school each day, communicate with teachers.

Terri Mauro’s Back to School Resources

But if your child has special needs, you can do even more. Terri Mauro’s free resources at www.about.com can help you become a proactive parent and a support to your child’s teacher. Here are links to her back-to-school resources.

• Assemble a Teacher Information Packet – This step-by-step how to tells you how to create a packet, whatever your child’s special need may be.
• Test Your School IQ – This quiz will show you what you need to learn to become an informed, caring partner in your child’s education.
• 25 Ways to Make this the Best School Year Ever -  Don’t let the number 25 scare you. This is one of the most doable and comprehensive lists I’ve ever seen.
• What’s Your Biggest Fear this School Year? – Go to this link to confess your biggest fear? Sometimes just talking about it can ease your worries.

About.com

I know I’ve said this before, but you will find a wealth of information at Terri Mauro’s page at www.about.com. Every time I go there, she’s posted something new and usable. So have a look. Then come back and tell us what you liked best.

Jolene

Today I’m wrapping up the series on phrases that push the hot buttons for parents of kids with special needs. (You can read Part 1, Part 2, Part 3 and Part 4 by clicking on the respective links.) Over the past two weeks, several parents have shared phrases that get them all steamed up, and today is no different.

But today’s mom makes me smile (hence the smile button) for two reasons. First, her response is impassioned as she deals with some hot buttons no one else dared to touch. Second, not only does she touch the hot button, she provides resources to help educate parents and kids about how to respond in the presence of kids with special needs.

What Not to Say

Here’s what this mom has to say about her hot button phrase which she framed in a Q & A format:

Q: “What’s wrong with him?”
A: Nothing is WRONG with him. What’s wrong is you asking such a question in FRONT of him. What’s wrong with YOU?!?!

See, I told you she was impassioned in her response. But she makes her point. Why would someone ask such a question in front of a child? Can you imagine how asking what’s wrong with a child would shape the child’s perception of self? The child can no longer be comfortable with who he is because people keep saying something is wrong with him. Ouch, ouch, ouch!

What Not to Do

But another behavior pushes this mom’s hot buttons, too. Young children often stare at her little boy when he’s out and about. In fact, this mom, Janis, recently posted an entry, Please Teach Your Children about Differences, at her blog, A Sneak Peek at Me. You may cry when she recounts the rude, insensitive comments and stares of children during their recent trip to the zoo.

Instead of railing at kids and parents, she pleads with them to educate their children about differences. At the end of the post, she lists several links. Following those links will lead you to great books to read with your kids. Books about kids with differences and special needs and how to respond to them. Books that will help kids become, as Janis says, “a generation of more compassionate and accepting children.”

Now that’s something to smile about, don’t you think?

Off to the library,
Jolene

Phew, is all this talk of hot button phrases making you sweat? If you aren’t today’s thought-provoking response will do the trick. (If you haven’t read the previous posts in the series – Part 1, Part 2, Part 3 – you may want to read them first to get some background.) Otherwise, here we go!

I Don’t Like “Disabled” or “Special Needs”

The mother of two young boys emailed her response to my original call about hot button phrases.  The names of her sons have been changed, but other than that, here’s what she has to say about her first hot button phrases.

“I would have to say that I really don’t like ‘disabled’ or ‘special needs’ even. I tell everyone that Carl has ‘extra needs.’ I have done this mostly because of his big brother, who is pretty special too. So, this is where ‘extra’ came from for me. I never wanted Calvin, my oldest, to think Carl was more special to me then him and now that he is six, I think he would do nothing but question why people call Carl special.”

Pretty amazing mom, don’t you think? She’s considerate of how both her sons will respond to the words used to define them. I don’t know how successful she’ll be at changing terminology across the country, but she’s got a great idea. How can we make it catch on?

Helping the Less Fortunate…Those Kids

The same mom went on to relate a recent conversation she had with a young girl:

“I recently heard from a young girl something that made me a little sad, she was just casually speaking with me, it was kind of a babysitter interview, and she was telling me how she helps with the Special Olympics in our area because ‘she just wants to help those less fortunate, she just loves those kids.’

I could not believe what I was hearing…I actually felt bad for her. I know she did not mean anything bad by it, she is young and uneducated…doesn’t that just make you want to go to schools and educate these kids?”

Though I’m not quite sure, I think the hot button issue for this mom is the patronizing attitude of the young girl. Why is she feeling sorry for kids in Special Olympics? They’re having a ball, enjoying life to it’s fullest. Their lives aren’t like hers, but they’re happy with their lives, at least until someone tells them how unfortunate they are.

Did She Get You Thinking?

Did this mom’s response get you thinking? I’ve certainly been thinking, not only about my words but about my attitudes, since receiving her email. Her perspective revealed areas where I need to change and grow. If it did the same for you, leave a comment about how you’ve been challenged. And come back next time for the final post in this series about hot button phrases.

Suffering some growing pains,
Jolene

I’m glad to see you back for the latest post about hot button phrases. The first post in the series was about words that pushed my buttons when our son was small. In the second post, the mother of a child with Noonan’s Syndrome shared her hot button phrases. Today, you’ll hear from a mom who responded to my original call for hot button phrases with outstanding grace and consideration for her child and others.

Kylie is Autistic

Today’s first mom makes an important point about hot button phrases. Here’s what she has to say:

“Instead of saying that Kylie is Autistic, we say one of the following:

• Kylie has Autism
• Kylie has an Autism Spectrum Disorder
• or our favorite response is that Kylie (or our family) experiences an Autism Spectrum Disorder (after all, it affects us all)”

Kylie’s mom goes on to say, “Another phrase that is a hot button is when people call children who are non-verbal – “dumb”.  Recently, we attended a home school conference where the song ‘O For A Thousand Tongues’ was sung and the lyrics were not altered to be relevant or sensitive to today’s times.  (the word “dumb” was used to describe individuals who are non-verbal in the song).”

We, of course, wrote a letter expressing our feedback and educating the leadership on what would have been more appropriate and considerate.

Phrasing Matters

Do you see how much phrasing matters to this mom, both in what is said to her and in what she says to others? By changing the phrases people uses, she focuses on her daughter, not on her daughter’s condition. By phrasing her own words with grace, she makes others aware of insensitivity and provides alternative ways of speaking.

An Example of Grace

I think Kylie’s mom is an exceptional example of grace in action. Her wise answers challenge me to think before I respond when people push my hot buttons. Her answer also begs a new question. What graceful responses have you developed on behalf of your child with special needs? Leave a comment or email your ideas so others can benefit from your wisdom.

Seeking grace in the face of hot button phrases,
Jolene

Welcome back for Part 2 in this series about phrases that push the hot button for parents of kids with special needs. In the first post, I shared my hot button phrase. In this post, I’m sharing the stories of some moms who answered my original call for phrases people need to stop using in the presence of kids with special needs and their families.

How Did He Get This?

Today’s response came from the mother of a child with Noonan’s Syndrome. (If that condition rings a bell with you, you may be thinking about Evan Newport, a little boy I’ve mentioned before at DifferentDream.com.) Here’s what she had to say:

“My hot button phrases are ‘What did you do to give this to him?’ or ‘How did he get this?’ or ‘Didn’t you get prenatal care?’

People sometimes wonder if I did something to give my child a genetic disorder. The only thing I ever did was fall in love with his father.  He also has the same genetic disorder as our son, but a case so mild that it went undiagnosed until our son was born. It isn’t something that we did on purpose. I had the best prenatal care available, ate nothing but nutritious food, and took no drugs other than what my doctor prescribed.”

We Didn’t Choose This for Him

Do you hear this mom’s frustration and pain? Do you sense her deep love for her husband and child and the hurt these thoughtless questions cause? She goes on to say, “Our son was just the victim of chance–every baby we have has a 50% chance to inherit Noonan Syndrome. We didn’t choose this for him, but not everyone understands that.”

Now We Do Understand

But now, we do understand. Now we know better than to ask questions like these. No matter how well-meaning our intentions may be and how curious we are, we have no right to pass judgment on parents of kids with special needs. Instead, we have a responsibility to treat all families with respect. And we have an opportunity to help them bear their burdens.

So what kinds of questions could well-meaning people ask to facilitate respect and provide support? If you have some ideas, please share them.

Pushing buttons,
Jolene

In one of the meditations in A Different Dream for My Child, I shared the story of how my husband sat in the neonatal intensive care unit and stroked our son’s cheek for hours and days following his first surgery.

Comfort in the Midst of Chaos

In a recent Comfort in the Midst of Chaos post, Barb Dittrich blogged about how she used the meditation to facilitate discussion with moms of kids on the autism spectrum. Dittrich related the moms’ insights about the importance of touch in their children’s lives, too. To read their insights, buzz over to the post titled The Comfort of a Mother.

How Does Touch Comfort Your Child?

If you’d like to share a story about how touch comforts your child, please leave a comment. Your experience may help other families give and find comfort for their children.

Thanks,
Jolene