As parents, we feel as if we know our son better than any doctor, therapist, or teacher; but we’ve always listened to and appreciated the help and support they’ve given. At times, however we must be firm in demanding what is needed or wanted for our loved one.

Here are a few things we’ve found helpful over the past 30+ years:

• We need to know our roles and responsibilities in this care giving capacity – who will make calls, keep records, etc.
• Keep a notebook or 3 ring-binder, writing notes to teachers or medical personnel, letting others add to it, and reading and reviewing what has been written makes for better communication, provid­ing everyone uses it!
• If you are family or friends of one with special needs, but not the primary caregiver – voice opinions but support final decisions if you are NOT the primary caregiver – as it their responsibility is to listen to advice and concerns and then choose what is best even if others were critical of the deci­sion. It is a tough balance, but needed.
• Read all you can to become educated on health, mental, physical, spiritual, and emotional issues.
• Ask questions, seek agencies and organizations that will provide what’s needed, and keep pursuing until you find and receive the best care possible for the loved one in your care. Depending on your loved one’s ability to think and act clearly, she or he will appreciate your efforts to learn about specific needs. For those lacking in the ability to think clearly and normally, you are so necessary in the equation of the care, and most importantly, you will know that what you are doing is what is right for them.

Proverbs 31:8-9, “Open your mouth for the dumb, for the rights of the unfortu­nate. Open your mouth, judge righteously, and defend the rights of the afflicted and needy.”

If we don’t do it, who will?

–Cindi Ferrini

Even allowing myself to imagine this moment never failed to elicit an emotional response in my heart. Each year in May I would attend our high school’s graduation to witness the commencements of nieces, nephews or friends’ children. As I listened to the names being called and watched the graduates cross the stage one by one, tears would come to my eyes at the mere thought of our son one day crossing that stage himself. How could I dare dream that a child with Down syndrome might be able to graduate? At the time, this was unchartered territory.

In my doubt and fear, I would reflect again on the character God remembering the praise time each week at my Moms in Prayer group where we always spend a few moments praising God for who is … trustworthy, sovereign, all-powerful, faithful and good. I believed God loved my son even more than I did, and I could trust God with the plans for my child.

Before we knew it, the big day arrived! As his name was read, our son crossed the stage to receive his “diploma,” and I was enveloped and overwhelmed by the goodness of God.

This verse sums it up for me: “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,  to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!” Ephesians 3:20-21

Take time in prayer to give your fears, your hopes and your dreams to God. He is the One who is able to go beyond our expectations.

Here’s a verse to get you started: “For ____ is God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for _____ to do.” Ephesians 2:10

Still hangin’ on to dreams,

–Linda Aalderink

• Ask yourself what feeds your spirit—reading an inspirational book? Listening to Christian or classical music? Worship? Creating art? Fly-fishing? Writing? Do it!

• Schedule time for yourself each week—a cup of coffee with a friend, a movie, a trip to the library by yourself, time at the gym—whatever energizes you.

• Schedule get-away time for you and your spouse on a regular basis. Find a friend or family member to trade childcare if necessary. Re-fuel your marriage!

• Pamper yourself for at least five minutes every day—lock the bathroom door and smooth a fragrant lotion on your feet (better yet, ask your spouse to give you a foot rub after the kids go to bed!), listen to your favorite song on your iPod, take a quick walk around the block.

• Keep a journal—you’ll be amazed when you read back over the year how God is working in your life, and how much you have grown and matured.

• Write down God-sightings in your journal—once you start looking for God in your daily life, you’ll be amazed at how often God shows up.

• Practice gratitude. One Thousand Gifts: A Dare to Live Fully Right Where You Are (Ann Voskamp) is a beautiful book that will open your eyes to the astounding gifts hiding in plain sight in the day-to-day fabric of your life.

• Spend more time outside. It’s impossible not to have faith and hope when you’re surrounded by God’s glorious creation. Chase a sunset. Look for rainbows. Lie down in the grass and watch the clouds. Count the stars.

• Parents of children with disabilities grieve. Find ways to externalize that grief:

Write about it in your journal
Share it with a friend
Speak it to a counselor or a pastor
Pray out loud
Yell at God if you have to—believe it or not, He can take it! (Don’t believe it? Read the Psalms!)

• Pray throughout the day—when you wake up, when you’re doing the dishes, when you’re falling asleep. Your prayers don’t have to be long, or theological, or complicated. Sometimes “Help, God!” or “Thank you, Lord!” is enough.

• Learn to meditate—we tend to forget prayer is a two-way street. Meditation helps us learn to listen to God. There are many books available on Christian meditation.

• Practice mindfulness—this is a gift my son with autism teaches me on a daily basis—how to block out all the external stimuli and simply “be” in the present moment. The classic devotional book, Practicing the Presence of God, is a wonderful resource.

Parents don’t come equipped with a bottomless well of energy. But the good news is, God does! As we drink from the cup of living water held out to us by Jesus, we find ourselves refreshed, refueled, and transformed.

Kathleen Deyer Bolduc

I take off running after my daughter.

“I said wait!”

I can hear her giggles, and she has no intention to stop. On the contrary, she runs faster, so I also have to pick up my pace.

We are attending a school field trip, and she stops running when she reaches her friends who wait for us by a large green wagon the farm let us borrow.

When we arrived at the farm, one of the owners approached us and asked if it would be helpful for us to borrow one of their wagons. I was thankful for the offer, as we quickly realized that the terrain was not ideal for my daughter’s walker. I got Nina in the wagon, then I folded up her walker and put it in there, along with my backpack full of water bottles for our little group. The wagon saved her from exhaustion, as there is no way Nina could have walked around the farm for four hours.

Thanks to her fancy ride, when she got down to play she had energy. Enough energy to take off running! She might have an awkward gait, and her knees clank together with every jumpy step, but nonetheless this girl can run and cerebral palsy won’t stop her.

“You little rascal!” I say as I catch up to her just as she falls down besides the wagon in a fit of giggles.

I am laughing too, she is amazing! Once, we thought she would never be able to walk independently, now she is running and her walker is neatly folded up. Thank-you-very-much.

And sometimes it is in the most unexpected places – like a kid farm – that I feel God’s presence and I feel Him whisper, this moment brings me great pleasure.  And I don’t know if it is her running, or if it is her accomplishments, or if it is the sight of me running after her, or the fact that one day He will restore her body completely, all I know is that He’s there, and He is smiling down at us, and this field trip suddenly becomes a Holy moment as I feel covered by His presence.

“Mom, I want to go on the swings next!”

“Mom, let’s go feed the goats!”

“Mom, will you go down the big slide with me?”

For a change I suggest we go walk through the tunnels, “And then I can take your picture Nina!”

So she walks into one of the tunnels, barely keeping her balance as the surface is not flat. I wait for her at the end of the tunnel and I can see the sun is bright, so bright. It illuminates her, creating an aura of light around her.

And God whispers to me once more.

You can see her knees are about to buckle, and she is trying so hard, but I am right here. She is mine. I love her. I delight in her. With your help, I will get her through the challenges of life she will face.

So I snap a picture, and I smile. Because I know in this journey of parenting a child with special needs I am not alone either, He is with me, He’s got my back. And sometimes He shows me His love by making Himself undoubtedly present at a field trip, smiling down as I run after my daughter, or by the wondrous display of light through a tunnel.

~ Ellen Stumbo

When we got his autism diagnosis, my dreams for him changed. Could he still be a world changer?

Last month my husband stood at a booth for our church at our community’s autism walk. Over 2,000 people walked by the booth and saw our church’s name. Some stopped and asked why a church would be at the walk. We were there to share the good news of God’s love and tell the families our church is a safe place for them and their special needs children.

One of the families who stopped at our booth that day has started visiting our church. My husband talked to the mom and she said, “We had decided we wanted to start taking the kids to church but were nervous. When you said your church had a special needs ministry we were interested. But when you said you have a son with autism and that your church loves him, we knew it could be the church home for us.”

Our church wouldn’t have a special needs ministry if it weren’t for James. He was the catalyst for the ministry to start. We wouldn’t host respite nights, have a special needs Vacation Bible School class, or have buddies for special needs kids in Sunday school and the service.

My husband and I didn’t start the ministry, but James did. Church members saw there was a need and met the need. It started with James, but it hasn’t ended with him. Families are being reached through the ministry. They are hearing the gospel. They are experiencing God’s love. And ultimately, their worlds are changing.

When I think back to my dreams for James to be a world changer, I’m amazed by how God has made that happen. What I saw as a weakness, God used as a strength. What I thought was the end was just the beginning.

When you feel like the dreams you had for your child are dying, trust that God isn’t giving up. His Plan A will still happen. Your child will still have an impact on the world because God will use him or her for His purposes. 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (2 Corinthians 12:8-10)

–Sandra Peoples

I came across a heart wrenching statement Sunday afternoon (while reading through some old articles on disability) reminding me of a tragic tale of desperation and hopelessness:

“We wish we had known she was feeling this desperate; we would have done what we could to help her.”

Those were the words of the Morgan Autism Center executive director, Jennifer Sullivan, in San Jose, CA after hearing about the tragic death of one of their clients, George Hodgins.

George was a 22-year-old autistic man who lived at home with his parents and had attended the autism center since he was 6 years old. “He was a good kid, a very good kid. He loved to be outdoors, he loved hiking and walking and doing things like that.” Sullivan said.

This was probably a rather accurate description of the man-child everyone at the center knew as “George”. But there is a terrible darkness shadowing the world of disability that few people realize.

George’s mother, Elizabeth Hodgins, was overcome by that darkness last year as she shot her autistic son to death in his bedroom before turning the gun on herself.

I cannot even begin to imagine the desperation, depression and hopelessness that leads to this kind of atrocity as a viable solution.

There are so many feelings that went through my mind when I first heard this story. I have to admit, anger was the first. How could a mother murder her disabled adult child? My anger quickly turned to frustration as I read the statement from the director of the autism center, “We wish we had known she was feeling this desperate; we would have done what we could to help her.”

Really? You knew this family since George was 6 years old, and you had no idea that they were struggling so deeply?

And then my anger and frustration dissolved into personal conviction and self-realization. Wait, I have been in this valley! I have stood in this darkness where no hope can be seen. I have looked into the future and seen nothing but pain and sadness. Jacob’s father is no better than George’s mother.

After the shooting, the autism center sent out a note to the parents making them aware of the situation. “I got back lots and lots of comments saying, ‘We have all been there,’ and, ‘We’ve seen the black hole.’ There’s no question these children are difficult, and these families need help.” Sullivan said.

“But let me tell you,” she said, “parents of kids with autism are under a terrific amount of stress. Many of these children don’t sleep at night. They wake up at 2 or 3 in the morning, and one of the parents has to get up, because they need constant supervision. It’s an exhausting experience.”

Exhausting, relentless, desperate…often seemingly hopeless. Those are all words that flood the thoughts of these weary parents.

“Parents of autistic children can focus so much on day-to-day tasks that they rarely look ahead at their future,” Sullivan said. “Then it hits them…my child is going to always be with me.’ They ask, ‘When is it going to end?’ But it doesn’t.”

As I read and reread this tragic article, the urgency of ministry ignited my resolve.

This is why I write, teach and preach. This is why faithful men like John Knight blog and proclaim the glory of God in disability in the midst of great suffering. This is why men like Justin Reimer labors relentlessly (often in poverty) keeping The Elisha Foundation afloat like a rescue boat for these hurting families. This is why ladies like Julie Brown and Carrie Fellows and The Lakeview Ladies sacrifice every year to bring these families together. This is why Darlene LaPlue and the folks at Manley Baptist Church throw huge, costly, Luke 14 dinner parties every year reaching out to hundreds of families with the love and gospel of Christ. This is why Joni Eareckson Tada proclaims God’s glory from a wheelchair and writes of hope in the midst of the darkest suffering.

And this is why Mike Woods and the Not Alone Blogging Team share their lives as struggling parents of children with disabilities to thousands of other struggling parents.

We’ve all been there. We are fathers and mothers and men and women and children who have walked through this valley. We know this darkness well.

We also know the only light that can shatter this darkness is the light of the gospel. And so for us, the “If we had known…” has turned into “We know…” And because we know, we will proclaim the hope of the gospel to these desperate, hurting, and often hope-less families.

If you are reading this today, we want you to know that there is hope. No matter how dark it may seem, there is hope. No matter what you have done, there is hope. No matter how unknown your future may be, there is a gracious God that has gone before you to prepare the way. He stands proclaiming with outstretched arms, through the cross of His Son and the promise of His word, “There is abundant hope waiting for you!”

• Psalm 39:7 “And now, O Lord, for what do I wait? My hope is in you.
• Psalm 42:5 Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God.
• Psalm 62:5 For God alone, O my soul, wait in silence, for my hope is from him.
• Psalm 71:5 For you, O Lord, are my hope, my trust, O LORD, from my youth.
• Psalm 119:114 You are my hiding place and my shield; I hope in your word.
• Psalm 119:147 I rise before dawn and cry for help; I hope in your words.
• Psalm 130:5 I wait for the LORD, my soul waits, and in his word I hope.
• Proverbs 23:18 Surely there is a future, and your hope will not be cut off.
• Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.
• Lamentations 3:20-22 But this I call to mind and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end.
• Acts 2:25-26 For David says concerning [Jesus], ‘I saw the Lord always before me, for he is at my right hand that I may not be shaken; therefore my heart was glad, and my tongue rejoiced; my flesh also will dwell in hope.
• Romans 5:2 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God.
• Romans 5:3-5 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.
• Romans 8:24-25 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.
• Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
• Romans 15:4 For whatever was written in former days was written for our instruction, that through endurance and through the encouragement of the Scriptures we might have hope.
• 1 Corinthians 13:7 Love bears all things, believes all things, hopes all things, endures all things.
• 2 Corinthians 1:10 He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.
• 1 Timothy 4:10 For to this end we toil and strive, because we have our hope set on the living God, who is the Savior of all people, especially of those who believe.
• Titus 1:1-2…for the sake of the faith of God’s elect and their knowledge of the truth, which accords with godliness, in hope of eternal life, which God, who never lies, promised before the ages began.
• Hebrews 16:18-19 so that by two unchangeable things, in which it is impossible for God to lie, we who have fled for refuge might have strong encouragement to hold fast to the hope set before us. We have this as a sure and steadfast anchor of the soul, a hope that enters into the inner place behind the curtain.
• Hebrews 10:23 Let us hold fast the confession of our hope without wavering, for he who promised is faithful.
• 1 Peter 1:3 Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead.
• 1 Peter 1:13 Set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.
• 1 Peter 1:20 [Jesus] was foreknown before the foundation of the world but was made manifest in the last times for the sake of you who through him are believers in God, who raised him from the dead and gave him glory, so that your faith and hope are in God.

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. (Romans 15:13)

–Greg Lucas

Colossians 2:12
And so, as those who have been chosen of God, holy and beloved, put on a heart of compassion, kindness, humility, gentleness, and patience.

Did you know you were chosen?

Did you know God picked you out specifically to be your child’s parent?

Did you know God chose you to receive Eternal Life, Everlasting Life?

Did you know God sacrificed his own son for you to live forever?

Did you know you are loved by God and cared for?

Chosen as defined in the Webster’s Dictionary says that it is one who is the object of choice or of divine favor. Wow, that makes me feel so special. He chose me to be Charlie’s mom.

God favors you and loves you. He does this all the time. He loves you unconditionally.

I know this concept was really hard to grasp so many years ago. We all have choices and make them daily. I know in the past as a kid I connected doing good=love, doing bad=no love. But God loves us all the time, no matter what. Of course, he wants us to make good choices, but loves us also in spite of bad choices we may make. Ephesians 2:8,9 says “For by grace you have been saved through faith; and that not of yourselves it is a free gift of God; not as a result of works, that no one should boast”. God wants us to come to Him always like Romans 10:13 says, “Whoever will call upon the name of the Lord will be saved”. What reassurance and peace I have in knowing that. If you want to have this reassurance please go to our prayer wall so we can pray with you.
God makes everything in love and perfection. My Charlie is perfect. Perfect for me. I am honored that God chose me specifically to be his mom. What a blessing!

~Patty Myers

However, the Bible does a better job at portraying real-life examples of parents and families.  Don’t believe me? Just take a look at some of the parenting examples that you encounter in the Bible:

• Noah- had a drinking problem.
• Abraham- offered his wife to another man.
• Rebekah- schemed with her son to deceive her husband, Isaac.
• Jacob- his sons sold their brother into slavery.
• David- had an affair, and his son started a rebellion.
• Eli- lost control of how his boys acted in church.

You might ask, “What about Joseph and Mary? They raised Jesus and He turned out okay.” That’s true, but don’t forget the time they left Him at church for three days! Today, they would have been reported to child services.

Clearly, God is not trying to paint a picture of an ideal family.  So what’s He doing? He’s writing a story. A story with multiple chapters, a story that’s unfolding, a story that is a process, not a point in time.. The Bible demonstrates with surprising candor that God is interested in using imperfect people…imperfect parents…imperfect kids…to tell His story.

God’s story is a story in which everyday faith becomes a reality.

It’s a story where we have a chance to start anew.  It’s a story that gives every family and every parent a chance.  Imperfect people are the primary characters featured in almost every story in the Bible and God uses them time and time again to influence those around them.  I believe that as parents we can breathe a little easier to learn that God is not nearly as interested in putting a perfect picture in front of us of what our family should look like as much as He is trying to tell a story through us.

If your picture is not where you want it to be at this time, you may be tempted to throw in the towel.  Don’t.  I would encourage you to not focus on the picture.  Focus instead on the bigger story that God desires to illustrate through you.  Rather than painting a picture of the perfect family, God wants to use our families as a canvas for His redemptive story.  He wants to use parents, just like you and I, to show our children and those around us what it means to have an authentic, everyday faith with a God who restores and redeems imperfect people.

Too many of us buy into the myth that we need to become the right kind of parent before God can use us to nurture our child’s faith and those around us.  The Bible does not give us a perfect picture of the family, but it does suggest that every father and every mother has a unique role in portraying God’s love to one another and to their children.  Let go of the myth and let God use you, just as you are, to tell His story.

God bless you and thank you for all that you do as a parent!

–Michael Woods

The reason I feel uneasy is because it’s pretty easy for us to have a child with special needs. It took some adjusting, and I still have the practical challenges of IEP’s and ENT visits and the like. But Penny is healthy, she’s happy, she reads books, she helps with her little sister, she gives me lots of hugs. William and Marilee, young as they are, love their big sister and get plenty of attention from me and other loved ones.

I feel guilty because we have a good life, and Penny’s needs don’t feel any more significant than those of our other children.

I was talking with a friend a few months back, and she accidentally completed my sentence for me. I was about to say that I thought Penny might “fall into a gap,” between typical kids and kids with special needs, but my friend said, “create a bridge.”

It’s possible, of course, that our sense of ease and comfort won’t last much longer, that a major health concern will raise it’s ugly head or that Penny will struggle more in school or with friends. But I’m hopeful that her health and happiness continue, and that we can use it not as a way to divorce ourselves from families with children with special needs who are struggling, but instead to connect, to bring together, to build bridges.

Some of you are feeling lonely and isolated and beaten down. I can only hope that this post hasn’t contributed to that sense of isolation. But some of you might need a gentle reminder, like the one I received from my friend, that though the world sees disability as negative (as I did–thinking Penny would “fall” into “a gap”), our children in and of themselves are gifts, to us and to the world around us.

God is a God of bridges, of going out of the way to find the lost and draw people near, no matter the cost. I am grateful, and honored, to think that our family might play a small part in God’s work of redeeming what has been broken, comforting those who despair, bridging the gaps.

–Amy Julia Becker