Special Needs Family Camp: A Princess, a Promise, and a Prayer

Special Needs Family Camp: A Princess, a Promise, and a Prayer

Special Needs Family Camp: A Princess, a Promise, and a Prayer

Earlier this summer, guest blogger Amy Stout and her family attended a special needs family camp at Hidden Acres Christian Center in central Iowa. The event had a Different Dream connection because Jolene was on the Wonderfully Made Family Camp (WMFC) special needs family camp planning board. When Jolene asked Amy if she’d do a guest post about her family’s experience to share with Different Dream readers, Amy said yes without hesitation. Here’s what she says was her favorite part of the camp. You might want to have a tissue handy while you read.

Special Needs Family Camp:
A Princess, a Promise, and a Prayer

I could tell you that my favorite part of Wonderfully Made Family Camp was the amazing lodging with a queen bed and 5 pillows–it was so luxurious. Kylie loved playing on the upper bunks and making a “tent” (partition) to sleep behind on the lower bunks. Also, our room was surprisingly sound proof. We were on the end of a hall and that was a blessing because of our daughter’s sleep issues.

Or …I could tell you that it was the food. I can hardly believe I am raving about camp food, but it was that yummy! Did you know that Hidden Acres chocolate chip camp cookies (4C’s) are famous and people actually order them for postal delivery?

Or… I could share about our experience with 40 foot tall zip lining, the climbing wall and giant swing. All were firsts for my girl–how brave she was. What confidence that gave her!

Special needs family camp was a wonderful experience for Amy Stout and her family. Her story about her favorite part of camp comes with a tissue warning.

Or…I could share about the first night’s breakout session on marriage with Gary and Barb Rosberg of America’s Family Coaches, where my husband Dan won sex tapes. (Actually it is a set of 4 DVDS called “The 5 Sex Needs of Men and Women” and the companion study guide.)

Or… I could tell you how exciting it was on the last day to have our name drawn to receive a door prize. It was a beautifully wrapped basket full of massage goodness–bath salts, candles, sugar scrub, soaps, bubble bath, hand massagers, a loofah, and a gift certificate for a massage.

Or…I could tell you how amazing it was for Dan and me to have breakfast together 2 mornings in a row… ALONE–In a room full of people, of course, but without childcare duties because Kylie was still sleeping. Her Buddies stayed with her so we could eat together.

Or… I could tell you it was the many social opportunities that were presented for both us as adults but especially for our daughter where she was loved, cherished, protected, and accepted.

Or… I could tell you it was the pool hours. We loved being able to swim late at night.

However… none of those things were our favorite thing. Our favorite thing about the special needs family camp were Kylie’s Buddies, Lydia and Sophia. I knew this in general as we left the camp but I fully realized it on our way home. I’ll explain why later

When we arrived at camp and were connected with Kylie’s Buddies. Yes, “Buddies” is plural. Due to Kylie’s “out-of-the-norm needs” we were assigned two. I was a bit concerned that they were teenagers. It was hard enough to hand my child over to a perfect stranger, but it was even more difficult handing her over to young girls. It was especially hard to let go because our child has communication issues and cannot tell us when something happens or goes wrong. How were these girls going to be able to understand her or meet her needs?

Within 5 minutes, I knew my fears were all unfounded. Kylie warmed up to them right away, and they were already speaking her language. As Kylie initially met her Buddies, our Disney Royalty-obsessed daughter introduced herself as “Princess Kylie.” Immediately the girls tailored their communication style to accommodate her Royal Highness. Once again, God had planned things in advance and paved the way to provide the perfect Buddies for Kylie.

Lydia and Sophia rocked our world that weekend. They were such servants to our entire family. They were not just Kylie’s Buddies; they were our Buddies as well. But more than being our Buddies, they quickly became close friends.

We loved chatting with them over meals and as we walked to the various scheduled events. We learned funny, quirky things like Lydia has goats at her house because her dad has a side job as a goat judge, and she loves the camp cookies. Sophia loves Croc shoes and writing letters. We learned that Lydia loves turquoise and Sophia loves yellow.

But then, our talks turned more intimate and we learned their hearts’ desires for their future and how they longed to follow God’s will for their life. How they are growing in their faith and cautious about moving too fast, stepping out of His perfect will or become impatient for answers. How they are learning every day to press into Him and not make decisions based on worldly pleasures or desires. After a meal with these two, I was encouraged like I hadn’t been in months! These girls were so fired up for God.

We were only with them for 1 full day and 2 partial days, but they served us tirelessly. They stayed with Kylie while she slept, so Dan and I could eat. When we were all able to enjoy a meal together, they cleared our trays and took them to the kitchen. They helped us carry luggage, they hand-fed Kylie, helped her with her toileting needs, Googled information for us about the towns nearby and how to find the nearest ATM Machine. They checked on our itinerary and gave us directions around the camp. Lucky for us, the girls both had experience with the zip line, climbing wall and giant swing and gave Kylie the courage to try. They were aware of and attended to Kylie’s anxieties – her sensitivity to light and sound and her fear of food.

On our second day, we had 3 hours to kill before our time slot at the giant swing, so we all hopped in the car and drove to a nearby town for ice cream. It was a glorious time of fellowship! These girls were full time summer staff at the camp and had just come off of a week of counseling campers (with no air conditioning in their cabin) and working in the kitchen. These girls were TIRED before we ever even arrived. And yet, they pushed through their own needs to attend to ours- to love on our precious girl and to pour into her life.

But this is what secured in our minds that Lydia and Sophia were our favorite part of camp: On the last day, Dan and I gave each of them a thank you note with a little gift inside. Nothing big, just a little token of our appreciation. I was stunned when they handed us a letter and each of them gave Kylie a letter. I decided to save the reading of their letters for the ride home, so we gave them big bear hugs (we’d been together so much that we felt like they were family), took a few final pictures, and we got into the car.

As I settled into my seat for the long car ride home, I began to read their letters. We weren’t but a few miles from the camp and I was a blubbering mess as I read the words they gifted my daughter with. As a mom, you always hope your child will be surrounded with God-honoring people who will point them to Him with their words and deeds, but when you experience Autism, there just aren’t many people pounding down doors to fellowship with our girl. It is a lonely and isolating world for children who experience special needs. We have to work at making friends.

In their words, Lydia and Sophia invested in our daughter in a meaningful and lasting way. They each gifted her with a Promise and a Prayer.

“Beautiful Princess Kylie: You are a princess of the one true King and that is the most beautiful princess you could ever be. Kylie, I pray that as you go home and throughout your life, you will grow to become a God-fearing, loving, and confident woman in who God has created you to be. 2 Corinthians 6 tells us that we have God as our Father which makes us daughters of Him as well. Psalm 139:14 promises us that God made us wonderfully and fearfully, Ephesians 2:10 is my prayer that you would walk in the path God has for you: ‘For we are His workmanship, created in Christ Jesus for good work, which God prepared before-hand, that we should walk in them’”

“Dear Princess Kylie: …You are truly a princess to the One True King, Kylie. God loves you so very much. His love will never leave you, it’s a forever love. He created you so pretty and He is pleased with you. I pray that as you go home and for the rest of your life you learn more and more about your Heavenly Father, and grow to be confident in the Lord. That you’ll love with all your heart, soul and mind (Matthew 22:37) Never forget that God is there for you at all times. It’s a promise that God didn’t make any mistakes when He created us. YOU ARE BEAUTIFUL!! Never forget that! Psalm 139:14: ‘I praise you, for I am fearfully and wonderfully made. Your works are wonderful. I know that full well.’”

They also made her some beautiful artwork. On the first, they put her name in the center of the page and surrounded it with these words in beautiful fonts:

Wonderful
Adored
Cherished
God’s Princess
Treasured
Loved
Blessed
Created by God for a Purpose
Beautiful.

On the second they wrote, and decorated with beautiful fonts and flourishes, these words:

You are a daughter of the KING!
Galatians 3:26

Yes, I can confidently say that Kylie’s Buddies, Lydia and Sophia, were definitely our favorite part of the special needs family camp at Hidden Acres. What a gift they were to our daughter and to our entire family. God, once again, went before us and worked everything for our good.

This experience will stay with us for a lifetime. We feel refreshed, renewed and reminded that God is for us. He has a purpose in every aspect of our life and we can do anything in His strength. (Philippians 4:13)

Has Your Family Attended a Special Needs Family Camp?

If so, we’d love to hear about your experience. So give the camp a shout out in the comment box if you want. Thanks!

Do you like what you see at jolenephilo.com/? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

 

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Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

Author Jolene Philo

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The Heart of a Special Needs Mother

The Heart of a Special Needs Mother

The Heart of a Special Needs Mother

Mother’s Day will be here in a few days. In honor of the day, Different Dream guest blogger Stephanie Ballard, mother of a child with significant special needs, is with us. She’s written a poem sharing the heart of a special needs mother. Grab a tissue before you start reading.

The Heart of a Special Needs Mother

I have been your mother
Long before you came,
When I first heard your heartbeat
And thought about your name.
When I looked at a monitor
And watched you move your hands
I thought, “Hey, I’m your mommy,”
And I started making plans.

I didn’t plan for anything
Except–the life you’d live,
The cute outfits we’d dress you in,
And all the love we’d give.
But life, it holds no promises.
This wisdom I impart:
Life’s most important lessons
Are those learned from the heart.

Now every day when I wake up,
I say a little prayer.
“Lord, watch over my child today
And let him know your there.
Give me the chance to show him
What it means to be part
Of this world we live in.”
This is a mother’s heart.

I watch my child growing up.
Each day brings something new.
Most people can’t imagine
All the things he has been through.
Each scar that he still carries
Can’t easily be missed.
I can no longer doubt it:
Miracles exist.
I have loved this child, Lord,
Right from the very start,
And I will remain hopeful.
This is a mother’s heart.

Sometimes it is not easy,
And faith becomes our guide.
For we live in the present
Hoping time is on our side.
They tell me that my child is
A “medical pioneer.”
But surely these are not the words
A mother hopes to hear.
Most mothers envision that their children
Will be kind, and successful, and smart.
I picture a thousand tomorrows.
This is a mother’s heart.

I see him playing in the park
And swimming in the pool,
I see him grasping my hands tight
On his first day of school.
I see him chasing fireflies
on a starry summer night
I see his life before me.
He is precious in God’s sight.
As I imagine all these things
My mind can almost chart
The well-laid plans I have for him.
This is a mother’s heart.

And if the time should ever come
That I must let him go.
Please help me to accept the fact
That I can’t watch him grow.
My blessing, my sweet miracle
His life, like precious art–
Each memory a brush stroke
on the canvas of my heart.
I have been his mother
Right from the very start
Nothing can ever break this bond
This is a mother’s heart.

Give a Special Needs Mother You Know a Shout Out!

When you’re done wiping away your tears, give a special needs mother you know a shout out for Mother’s Day in the comment box. And yes, that special needs mother can be you. We’d love to hear your story here at Different Dream.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.

Author Jolene Philo

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The Angels Stood By

The Angels Stood By

The Angels Stood By

Christmas 2015 is now a memory, but guest blogger Steph Ballard is here with a poem that reminds parents that their kids with special needs are gifts they can see every day. If you’re a Steph Ballard fan, you know this poem comes with a tissue warning.

The Angels Stood By

‘Twas the night that you joined us
All eyes were on earth
Awaiting with joy
for our sweet child’s birth.
The angel’s stood ready
For each need and care
But all of them knew
That the Lord would be there.
And I squeezed Daddy’s hand
Knowing that he was scared.
While we waited, and wondered,
Asking, “Are we prepared?”
See…we knew you were special,
But so very sick.
Yet hope had grown in me
With every kick.

Soon it was time,
Into this world you came.
I heard a soft cry
then I called out your name.
God held your small hands
While the angels stood by.
Since I could not hold you
they hushed your soft cries.
One small angel looked
to the Father and smiled,
“Can you truly teach hope
through such a small child?
An infant so helpless,
a life so brand new,
Oh please tell me Lord
is this what you will do?”

God looked from the angel
to the infant’s sweet face,
“Through him, my young charge,
they will learn about grace.
I penned this child’s journey
quite a long time ago
And through every challenge
This family will grow.
Every hair on his head
has been numbered, you see.
It’s my hope that his life
will teach them to see Me.
Each battle they face
Has already been won,
They will lean on each other
They will lean on my Son.”

“So little one, we welcome you
And love will see you through.
See look, that is your family,
They’ve been waiting for you.
I send you to their warm embrace.
For a time, we’ll be apart;
But always I’ll be with you
For I live within your heart.”

And so we held you in our arms
And thanked our Lord above
For we see in you the miracle,
of His undying love.
So when it’s Christmas morning,
And I watch my children play
I’ll need no great reminders
For I see my gifts each day.

Your Thoughts?

Are you done crying? Want to leave a message for Steph about her poem? Check out the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.

Author Jolene Philo

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Unto Us a Child Is Born

Unto Us a Child Is Born

Unto Us a Child Is Born

For the first time in many years, my husband and I are greeting the coming of the Christ Child in the presence of a baby. Our sweet grandson is almost 10 months old, and we are oohing and aahing over every new task he masters.

Hand-clapping.
Feeding himself and making a mess.
Drinking from a sippy cup.
Creeping and crawling across the carpet for the first time.

The wonder of Christmas becomes reality as we watch and celebrate every accomplishment of this grandchild we love so much.

The wonder of Christmas also raises many questions in my mother’s heart.

Did Mary’s heart swell the first time Jesus clapped and crowed for joy?
Did the infant Prince of Peace smear food in his downy hair?
Did his father carve a wooden cup that fit inside his Son’s baby hands?
Did the dirt scrape Jesus’ chubby knees when he first crept across the floor?

To read the rest of this post, visit the Not Alone website at specialneedsparenting.net.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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Celebrating the Holidays Special Needs Style

Celebrating the Holidays Special Needs Style

Celebrating the Holidays Special Needs Style

Merry Christmas and Happy New Year to special needs families everywhere. With the biggest holiday week of the year upon us, guest blogger Karen Jackson is here with some tips about celebrating the holidays special needs style.

Celebrating the Holidays–Special Needs Style

As the parent of an 18-year-old daughter who has autism, I have some experience getting through the hectic holiday season. In the early years, I tried to cling to what was expected and traditional; often traveling great distances to visit with family. As you might imagine, these efforts left me and the whole family exhausted. Our celebration of Christmas has definitely become more special needs-friendly and less stressful. Here are a few questions to consider as you prepare to celebrate your own faith tradition.

  1. Is traveling really worth it? Our December 2003 flight to California with three children in tow proved to be our last flight as Samantha, our daughter with autism, screamed and cried for much of two full flights across the country. After this disastrous experience, we encouraged our parents and anyone else to visit us in Virginia at Christmas. Our daughter is happier at home in her familiar environment. We have developed a wonderful tradition of hosting Christmas Eve dinner for some of our extended family at our house.
  2. Should we try to entertain friends? I am a pretty social person and absolutely love to host parties, but Samantha has not always been fond of having a lot of people around her. In an effort to compromise, I learned how to make parties more special needs-friendly for her. Every December my husband and I invite all of our neighbors and friends to our home for a come and go holiday open house. I always make sure our daughter has a caregiver or buddy assigned for the evening. This frees me up to enjoy my guests and gives peace of mind that Samantha is cared for and part of the party. We also designate an area of the house as a “no guest zone” so Samantha has a space to retreat to for a sensory Samantha actually has increased her tolerance for being at parties and now looks forward to it, spending more and more time in the midst of the party every year.
  3. What about a visit to see Santa? If your child is like mine, however, you won’t go anywhere near the malls or other busy places for a picture with Santa. But we found some great alternatives. When our children were very young, my neighbors asked if their friends could come visit Samantha at our house in their Santa and Mrs. Claus outfits. The first few years, Samantha would literally run from the room, she was so scared. But eventually, she warmed up to the sight of them. About five years in, Samantha cautiously stayed in the living room. After about 10 minutes, she walked over, reached out and touched his white-gloved hand. It took a mighty effort to make progress and give our kids a typical experience, but it was definitely worth it. Although Samantha is now 18, Mr. and Mrs. Santa Claus still make a visit to say hello to her. Other options include finding sensory friendly Santa visits that are often offered through special needs organizations. You could even renting a suit and enlist a friend to play the part.
  4. Should we try to attend religious services? Houses of worship swell at this time of year. As Catholics, we try to attend the less crowded early Christmas Eve Mass, getting there very early, before anyone can take Samantha’s favorite seat. The ushers ensure we are seated so that we can see the pastor and that we are in the correct line for communion with the father she likes. Even if you do not attend a place of worship regularly, you can still enjoy attending a service at Christmas. Do some research ahead of time. Find a faith community that accommodates for special needs. Many congregations now have disability programs or ministries or even a contact person to help with accommodations. Stock a bag of your child’s favorite (quiet) sensory toys and a few snacks. Schedule in some sensory breaks also.
  5. How do I take care of myself? As the parent of a child with special needs, you may already be overwhelmed. My best advice is to accept your limitations and your child’s. Give yourself some scheduled breaks. The next time friends ask, “What can I do?” or “What gift would you like?” suggest they provide child care so you can have an evening of respite. Remember, you do not need to do it all during the holiday season. Try to find a bit of time for self-care. Keep exercising. Spend some time with friends. An evening out by yourself can be invigorating. Do whatever it takes to renew and strengthen yourself for the holidays.

Don’t be afraid to think outside the box as you plan for Christmas this year. Decide what you might like to try, rework it to accommodate your child and your family and enjoy celebrating the holidays–special needs style.

Your Tips for Celebrating the Holidays?

Do you have some tried and true tips for celebrating the holidays? Please feel free to share them in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Karen Jackson is the Executive Director of Faith Inclusion Network of Hampton Roads where she lives with her husband and three children in Norfolk, VA. She is also the author of the recently published book, Loving Samantha.

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7 Holiday Survival Tips for Special Needs Families

7 Holiday Survival Tips for Special Needs Families

7 Holiday Survival Tips for Special Needs Families

Christmas. The most wonderful time of year. Unless it isn’t. Which is often the case for special needs families. So guest blogger Sheri Dacon is here with her tried and true list of 7 holiday survival tips for special needs families.

The Most Wonderful Time of the Year:
7 Holiday Survival Tips for Special Needs Families

It’s called the most wonderful time of the year, but it can also be the most stressful. As special needs parents, we often feel like wounded warriors as we limp our way into January.

Here are seven holiday survival tips for special needs families to get you through the season with minimal wear and tear.

1. Take care of yourself.

It bears repeating: put your own oxygen mask on first. Take the necessary steps to keep yourself healthy and as stress-free as possible. When you’re stressed and exhausted, you’re putting your family at risk for a chaotic and overwhelming holiday. It’s vital to tend to your physical, emotional, and spiritual needs. Sleep, diet, exercise, and spiritual fulfillment are crucial all year round, but especially during the Christmas season, when tensions run high. Make self-care your #1 priority during the holidays.

2. Keep it simple.

There is no such thing as a perfect holiday. Our media-saturated world somehow convinces us that we can craft, bake, or buy our way to the best Christmas ever. It’s simply not true. Avoid Pinterest and keep your decorations, gifts, and food preparation simple.

3. Emphasize the true meaning of the holidays.

Our kids — especially those with special needs — tend to obsess over the material aspect of the holidays. They associate Christmas with presents, and can become overly agitated if they don’t get what’s expected. Talk to them about expectations during times when they are calm. Gently remind them of the true meaning of Christmas. Spend quiet family times reading special books or telling stories. Consider having family devotionals that point to the true reason for the season.

4. Stick to a regular routine.

It’s important for the whole family, but especially for special needs kids: keep your schedule as close to normal as you can. Even though kids are out of school, insist on a regular bedtime and limit screen time. Have the family continue with everyday chores. Adhering to a routine helps lessen the stress of the holidays, and it will help your special needs child (and you) feel more grounded when tinsel and wrapping paper are everywhere.

5. Plan for down time.

With parties and festivities galore, the holidays can be overwhelming. Plan ahead for quiet family evenings at home. Too many social outings can be challenging for special needs kids, who need time and space at home to decompress and recharge.

6. Do what’s best for your family.

Put your family first when it comes to holiday planning. It may seem selfish, but it’s actually healthy. It’s crucial to consider your family’s unique challenges when planning celebrations. You may end up disappointing friends or family members, but it is okay. If you need to stay home or come late to a celebration in order to accommodate your family’s special needs, make that decision and stick to it.

7. Don’t be afraid to say no.

You don’t have to do everything. It’s okay to say no to baking cookies, caroling, or buying a white elephant gift this year. If an activity or event is too much for your child (or you), or if it causes undue stress, politely say no and move on.

The Christmas season truly can be a wonderful time, but it requires planning. Be proactive and decide now to implement these strategies so your season will be one of peace, not chaos. And from my special needs family to yours, Merry Christmas!

How Do You Survive the Holidays?

Do you have tried and true holiday survival tips? Leave them in the comment box.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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You can learn more about Sheri by visiting her website at sheridacon.com.

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