Parenting a Child with Special Needs

Medical appointments, prescription trials, multiple surgeries, therapy sessions, school meetings, behaviour plans, physical care, sleep deprivation and lack of available special needs childcare.

Tears, fears and lots of heartache.

Whatever the diagnosis, raising a child with special needs is not easy.

But if you’re raising a child with special needs, what you do matters.

With my youngest niece, The Princess

What you do matters to your child.

Even if your child's special needs are so severe she doesn't have the ability to say so, what you do for her matters. In more ways than you and I will ever imagine, what you do matters to your child.

What you do for your child with special needs matters to your typically-developing children.

Stephen Covey said the security of everyone in the family rests on how the weakest family member is treated. When you love and cherish your child with special needs, even on the darkest, most difficult days, your typically-developing children know they too are worthy of your unconditional love. They can live in the security that, no matter what, they too will be loved and cared for.

What you do for your child with special needs matters to your church.

The Church in North America needs a reminder that people with challenges are worthy of love and care, and that the Lord commands us to care for them. When you visibly, consistently display your love for your child, the Church hears the reminder it so badly needs.

It may be hard on you to be the one giving this message, but when you do, it matters.

What you do for your child with special needs matters to your community and your country.

In Canada, several years ago, a father killed his teenage daughter who had cerebral palsy. His lawyer called it a "mercy killing", but more accurate information showed the family felt they could no longer care for her. My heart goes out to this family, so beleaguered they planned and carried out the killing of their own child. However, I'm even more grieved they received so much public support for doing so.

When you care for, and love, and cherish your child with special needs, even on the days you're sure you have no caring left, you declare to your community and your country that you value all human life. You silently, powerfully shout that the life of a person with special needs is also worthwhile.

What you do for your child with special needs matters to God.

God didn’t give you this challenging task – raising a child with special needs -- because “you’re so special”.

Nor did He place you in this role as a punishment.

But according to His own wisdom and goodness, for reasons we don’t fully understand, He did orchestrate the events of your life so you’re raising a child with special needs.

He who called you to this task treasures your child... and He treasures you.

He asks you to be faithful in caring for him or her. (Not perfect, faithful.) He also cares for you.

He understands how hard it is for you...and for your child.

And when you show tender-loving care to your child with special needs, He is honored by your faithfulness.

Whatever we do for someone in need, we are doing for Jesus Himself.

That doesn’t just apply to caring for poor and hungry strangers.

It is for you, caring for your own child within your own family.

What you do, on the front lines and in the shadows, in the public moments and the unknown corners of your child’s life... all matters.

Please remember... what you do matters.

-- Reenie

*From  Seven Habits of Highly Effective Families

Step to The Front of the Line

We who are in Christian faith communities believe every human being is precious in God’s eyes because He made us in His image.

We believe our worth will never be diminished, no matter what other factors come and go.

We believe that people with disabilities and other challenges are as valuable to God as those of us whose challenges are less visible.

We nod fervently when we read that the Bible says God chooses to use people who are weak, for His glory. (1 Corinthians 12)

From early childhood, we’re taught to sing,

“Jesus loves me, this I know,

For the Bible tells me so.

Little ones to Him belong.

They are weak but He is strong.

Yes, Jesus loves me....”

We cheerfully quote what Jesus said:

“Whatever you’ve done for the least of these, you’ve done for Me.”(Matthew 24)

So why...I ask you...Why-oh-why-oh-why do we so often not act that way?

Within my lifetime,

I've been delighted to see enormous improvements in how communities

accept and welcome people with all kinds of visible challenges.

I could give you a long list of agencies within my own city,

government-funded and otherwise,

who energetically,

passionately

work for the inclusion and benefit of people with disabilities.

I can’t tell you how deeply grateful I am for these agencies’ work.

What a difference they make for people with special needs

and for those who love them!

But it grieves my heart just as much

that there are still so few churches

who actively welcome people with disabilities.

We, who by the most basic statements of our faith,

declare that we value those who are weak,

often act like they have no worth at all.

We ought to be at the front of the line,

leading the way,

raising the bar,

setting the example.

What twists a knife in my gut is that,

instead,

we’re usually at the back.

And, oh --

we’re not just compliantly following along as someone else shows the way.

We’re often as-far-back-as-we-can-be,

dragged along with our heels dug in as-deep-as-we-can-dig-‘em.

Some of us even have even thumped ourselves down on the path,

refusing to move at all,

and making every effort to slow down anyone else who might like to move forward.

At my city’s local amusement park,

large and threatening signs prohibit queue-jumping.

Fortunately,

thankfully,

the Church is in a different kind of line.

In this line, we’re invited,

encouraged,

even urged,

to march up to the front of the line.

Yes, we have been late to do this,

but the good news is that it’s not too late.

So.

Let’s stand up for what we say we believe,

ask God to help us fix the attitudes we need to fix,

and pull our heels out of the sand.

Let’s march right up to the front of the line

and start leading the way.
-- Reenie

Hot and Holy
Bill Hybels’ book Holy Discontent came into my hands only recently, but ever since I heard the title a few years ago, it has resonated with me.
I admit that lots of world-size problems weigh on my heart. I’m moved to tears that children and adults are homeless in my very own city. It tears my heart to hear stories about men, women and children sold as slaves. I feel a great sadness to know that many people are tortured for being faithful to their religious beliefs. And I get a knot in my gut when I think that many children go to sleep hungry every night.
But, honestly, those things don’t “wreck me”, as Bill Hybels’ book says. Those issues don’t burn a hole in my heart, and, awful as they are, they don’t usually keep me awake at night.
But other things do wreck me.
I experience physical pain when I watch a pretty teenaged redhead being ignored by peers and adults at the church her family attends... because she uses a wheelchair. I have trouble sleeping after a mother tells me a Christian school refused to enrol her bright, talkative son...because he has autism. I get heated up inside when I meet a sweet little girl who loves Jesus, but is repeatedly sent away from her church’s children’s programs... because she has Down syndrome.
I get hot under the collar when a child with special needs is denied proper access to any community group, but I get especially hot-and-holy about it when that group claims to be part of the Body of Christ.
We all know Jesus said, “Whatever you’ve done to the least of these, you’ve done to Me.” We who say we love Jesus should be the first to welcome people with challenges. What wrecks me is that, usually, we’re the last.
That’s what Reenie’s Resources is about. Once a week or so, I’ll post an entry related to opening doors, especially doors to the Church, for people who face challenges. I hope you'll check in regularly and comment often! I’d be honoured and encouraged if you become a “follower”.
Before I go today, I have a question for you.
What is God stirring up in your heart? What in this world gives you a holy discontent?
Whether you’re hot-and-holy about world poverty or child abuse or unjust prison sentences or rampant crime or lonely elderly people or lack of access to medical care or...or...or...I encourage you to do what Holy Discontent suggests:
Feed it. Learn more about the problem and what you can do to fix it.
Fight for it. Be prepared to meet resistance and overcome obstacles.
Follow it. Do all in your power to right that wrong in this world.
Together, you and I can leave our children a world that’s better, safer and more hopeful than the one in which we started. We can... so let’s do it!
• Reenie

I Have a Dream

I have a dream…
that every child
regardless of ability or disability
will be welcomed
and will find a place to belong
at their neighborhood Bible-teaching Church.

I have a dream
that every child who can’t walk smoothly
will have a friend to lean on
or to push his wheelchair
so he can enter fully into the life of his church family.

I have a dream
that every child who can’t reach out her hand
will have a hand reached out to her
so she’ll know she’s accepted in the body of Christ.

I have a dream
that every child who can’t participate in a full Bible lesson
will have a lesson designed for him,
a lesson he can fully enjoy.

I have a dream
that every child who cannot speak
will be spoken to
and will be included in conversation
and in other children’s play.

I have a dream
that every child who cannot hear with her ears
will be taught stories and songs
in a language she can hear.

I have a dream
that every child who cannot sing
will enjoy the sound of others’ singing
and will praise God in his own way.

I have a dream
that every child whose hands cannot clap
will have friends who clap with her
and for her.

I have a dream
that every child who cannot run
will play games with his friends
and will have friends who cheer what he can do.

I have a dream
that every child who cannot cooperate or pay attention
will be loved and cherished
no matter what.

I have a dream
that every child who cannot see the pictures of the Bible story
will see very clearly that Jesus loves her
because she has been shown love by those who love Him.

I have a dream
that every child who doesn’t learn in the typical way
will learn about Jesus and His love for her.

I have a dream
that every child who doesn’t move in the typical way
will move into full belonging in the family of God.

I have a dream
that every child who doesn’t grow in the typical way
will grow in his or her relationship with Jesus Christ.

I have a dream
that every child
no matter how intelligent or delayed
oppositional or compliant
athletic or motor-challenged
healthy or frail
will know Jesus loves him or her
and that He died for him
for her.

I have a dream
that everyone in the community outside the church
will know they too will be welcomed
and accepted
in their local church family
because they have seen the church obey Christ’s command
to love and accept
all those who are
“the least of these”.

I have a dream...

I have a dream.

© Laureen F. Guenther, 2006