Special Needs Respite: How to Start a Program

by jphilo | Nov 17, 2014 | Different Dream, Special Needs Ministry, Spiritual Support

Special Needs Respite: How to Start a Program

Special needs respite should be a component of every special needs caregiver’s life. Unfortunately, finding good respite care is difficult in many parts of the country. In the final post in Cameron Doolittle’s series about special needs respite, he shares many ideas and oodles of resources churches can use to create respite programs right where you live.

Special Needs Respite: How to Start a Program

We hear from senior pastors that often someone in their church wants them to ‘do something’ about special needs. But the pastor says, ‘My plate is so full. I’d love to do something, but I just can’t add one more thing.’ So how can we make this easy for your pastor and a huge win for your church?rEcess

God is using Jill’s House to bring respite and renewal to families affected by disability in the DC area and across the country. But this did not happen overnight. Here are a few of the resources we relied on as we built our programs. I hope they help prepare your church to ‘do something’ about disability ministry.

Step 1: Recruit Special Needs Respite Volunteers

First, you’ll need a group of committed volunteers. No matter the level of their enthusiasm and passion, one or two people will not be able to sustain an effective disability ministry. One way to inspire volunteers is to take them on a missions trip where they can work with people with disabilities. Jill’s House Weekend Adventures provides an opportunity for groups or individuals to spend a weekend learning about God’s heart for disability and seeing disability ministry in action. They’ll return to your home church ready to apply what they’ve learned.

Step 2: Locate Special Needs Respite Coaches

Second, you’ll need advice. I recommend two amazing ministries (led by two friends of mine) that coach churches on building very doable, impactful ministries to families of children with disabilities: Matt Mooney at 99 Balloons and Marie Kuch at Nathaniel’s Hope. Check out Matt Mooney’s piece about rEcess or Marie Kuch’s amazing Buddy Break. By following their guidance, you’ll find that providing a high-impact ministry to families in your community is easier than you think!

Step 3: Learn from Special Needs Respite Pros

Third, you’ll need to learn from the pros. As your program grows, you should know there are some great “sherpas” out there who would be happy to guide you along the path. Jackie Mills Fernald at McLean Bible Church’s Access Ministry has put together some great tips for pastors. Joni & Friends was doing disability ministry before it was cool, and they have awesome resources to help churches. I particularly recommend Five Myths About Starting a Disability Ministry.

God hasn’t taught us to heal children with autism or genetic abnormalities, but He has given us the tools and resources we need to support their families. Our prayer is that as we serve them in Jesus’ name, they come to know—or trust more fully in—His infinite love for them.

Your Special Needs Respite Questions?

Do you have questions about how to start a special needs respite program where you live? Leave them in the comment box for Cameron to answer. Thanks!

Part 1: Special Needs Respite & Jill’s House
Part 2: Special Needs Respite: Camps

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Cameron Doolittle has been President & CEO of Jill’s House since it opened in 2010. He loves that families find physical and spiritual rest through Jesus, and that Jill’s House is helping prepare a new generation of leaders to love children with special needs as God does. Before he came to Jill’s House, Cameron was the “new business launch guy” at Corporate Executive Board. He’s a graduate of Stanford University and holds a JD/MBA from UC-Berkeley. Cameron and his wife, Carolyn, live in Falls Church with their four young children.

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Special Needs Happiness for Parents

Photo Credit: www.freedigitalphotos.net

Special needs happiness is an elusive find for parents. Guest blogger Rebekah Benimoff, whose long ago desire was a happy life, never found the dream of her youth. But, as she shares in this post, she found wholeness instead.

Special Needs Happiness, Or Wholeness?

All I ever wanted was a normal, happy life. As a teen I assumed I would marry, have children, and live the average Christian life – singing in the choir, teaching children’s church, maybe lead a Bible study every now and then. I thought I would end up serving in an orphanage in a poverty stricken country, or perhaps be a missionary’s wife.

I never imagined ending up in the suburbs near Dallas facilitating medical care for three family members with various medical diagnoses.

Special indeed, this special needs lifestyle. Am I happy?

Some days, yes.
Some days I am a stressed-out wreck.
Some days it’s all I can do to balance it all–and forget about “keeping it together.”

But I would not trade this journey for all the happiness in the world, because this often chaotic life is what teaches me about God’s plan for my wellness and healing.

There’s been a lot of buzz on social media regarding whether God wants us to be happy or not. My go to quip is, God wants us to be whole, not happy. On a deeper level, I would add that God created us for fellowship with him. Happiness cannot complete us–only God can. Chances are, we are going to face a lot of days where we are not happy–and it’s imperative to know Who to run to in the chaos and in the calm.

Recently I’ve found myself frustrated, anxious, and generally under a lot of pressure. Parents of typical kids may breathe a sigh of relief when they send their kiddos back to school.

Yet I tend to find myself putting on the armor of God and going into battle.

Sometimes the way is smooth and school personnel are knowledgeable and cooperative. Other times, not so much.

This year I am training a new school nurse who has experience and knowledge, but has been distracted by the learning curve and her case load. This past week has been fraught with challenges–a veritable emotional minefield.

I felt angry when the new nurse did not focus on our (multiple) conversations long enough to answer her own questions.
I felt frustrated when she couldn’t find the supplies I had brought to school for his care (important items like insulin and snacks).
I felt out of the loop and anxious when she called the emergency line at the diabetes clinic each time my son’s blood glucose level was out of range- instead of contacting me or simply following the care plan.
I felt determined when I called the nurse’s supervisor, relieved when the supervisor listened to my concerns, and scheduled a meeting the next day to resolve the issues.

I felt a lot of emotions this week, and none of them have been happiness.

Anger, yes.
Comfort, yes.
Relief, Yes, yes, YES!

As each obstacle has been prayed over and then overcome, I’ve known God’s guidance, provision, and goodness in the midst of my struggling. I’ve been reminded to take care of me to offset the stress: to exercise (movement releases stress) and pray, pour out- another way to relieve stress.

I’ve found comfort in placing everything that is out of my control in the hands of the One who can change others’ hearts, and heal my own.

Release of pent up emotions has been key, and I’ve found healing as I get out into the green spaces I love to walk and pray, run, and release. I’ve also been reminded to rest. Creating new care plans and working with multiple teachers for each of my sons (16 teachers, not including the Counselors and nurses), as well as managing the many medical appointments has left me wiped out physically and emotionally. I am learning to take time to recover in spirit, soul, and body.

To be still.
To rest and pray.
To release and find rest.

Am I happy at this very moment? No. But I am content.

Because peace in heart, soul, and body resonates long after momentary happiness has passed.

Too blessed to be stressed? Not so much.

While I appreciate the reminder of perspective, sometimes I am stressed, regardless of perceived blessing. At the end of the day–and in the middle, and the early morning too–the true blessing comes as I connect with God.

Often, He works not to remove the stressors, but rather to soothe me in the midst of them, granting wisdom to walk through the battle connected with his love, and gentle strength.

There is courage in connectivity to the One who carries and equips.

For me, the blessing is God Himself. A precious Presence in my life, this Voice leading, guiding, calming me when medical chaos- or life in general- would otherwise overwhelm me. It’s when I get to a quiet place and be still that I recognize He is the blessing–

whether I am happy or not,
whether life is what I want or not,
whether a storm is raging or not.

There is only One who is the gift in my every moment. The One who holds me in the quiet places, and in the storms too. I am at peace in God alone.

Happy?

Not recently, no. But joy comes as I connect to the One who is my Source–the One who moves me to greater wellness whether it’s enjoyable or not.

I used to want to be happy, and while I don’t object to happiness–I still prefer it to those other emotions–at the end of the day I have to confess I’d rather be whole.

Special Needs Happiness or Wholeness for You?

What’s your story? Have you found special needs happiness or are you content with wholeness? How did you find it? Leave a comment.

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Rebekah Benimoff is the wife of a husband with PTSD and the mother of two young men, both of whom grew up with medical and special needs. She blogs at In the Chaos…. and In the Calm (justmemama.blogspot.com).