God Is With Us on the Way to Bethlehem

God Is With Us on the Way to Bethlehem

God Is With Us on the Way to Bethlehem

A few short days after Christmas, my daughter will serve as chauffeur to what we both hope will be my final doctor’s appointment since breaking my foot almost 3 months ago. While we are both excited to hear that I can resume driving and other duties she’s taken on during my convalescence, we’re also apprehensive about the 30 mile drive to the hospital and clinic.

Because my daughter is, as the Bible says, great with child.

I have no desire to deliver a grandchild under any circumstances. But I really, really don’t want to welcome a new life into the world while tromping around in an orthopedic boot that looks like a costume piece from Young Frankenstein. In December. In Iowa. Where the weather can be frightful this time of year.

Sure, the baby isn’t due for another month, we tell each other. Sure, we’ll have our cell phones. Sure, we can dial 911 if need be. Sure, it’ll all work out, we reassure one another.

After all, I joke weakly, Mary and Joseph made it to Bethlehem, didn’t they?

Those words, once spoken, bring more peace than my attempts to control the situation by arranging for alternate transportation, constantly plugging in my phone so it’s 100% charged at all time, packing a baby delivery kit, and throwing the daughter’s suitcase in the car.

Joseph and Mary made it to Bethlehem on a donkey without a cell phone.

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

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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The Gift of Perfect Imperfection

The Gift of Perfect Imperfection

The Gift of Perfect Imperfection

As Christmas draws near, guest blogger Steph Ballard shares a gift treasured dearly by every parent of a child with special needs–the gift of perfect imperfection.

The Gift of Perfect Imperfection

I thought I knew what perfect was.
I’d flip through magazines
Dazzled by each page I saw–
Models and beauty queens.

Surely, they must have it all
Not one trait to despise
And then came you to show me
The world through new eyes.

As Christmas Day draws closer
With every red and green hue
I see things even more clearly–
My best gift has always been you.

The gift was in my first glimpse
Into your isolette
Learning to love–with words alone–
I could not hold you yet.

The gift was in your tiny heart
We prayed could be repaired,
Asking for so many prayers
And knowing people cared.

The gift was when your surgeon came
And told us you would live.
Knowing if we got this chance
There’s nothing we wouldn’t give.

The gift was in that feeding tube
And tape marks on your cheek,
And even in your careful steps
With muscles labeled “weak.”

The gift was when you tried to talk.
I prayed you’d grow and thrive.
The gift is in that long thin scar
Because you are alive.

The gift is watching your chest rise and fall–
You’re sleeping peacefully–
It’s also in the lives that you’ve touched
And how much you’ve changed me.

The gift is in the friends I’ve made–
I never would have guessed–
And every single day we have
Reminding me I’m blessed.

The gift is that I need no words
To help me understand
That my child has a purpose.
His life’s divinely planned.

The world sees the best gifts
In many ways unspoken,
But in my heart I know God sees
The gift in what’s broken.

Not the perfect body
Or words, or job, or face.
The gift is when we lean on Him
And learn to see His grace.

We still do not know
What our future brings
But I now see the the best gifts
In the everyday things.

The best and most beautiful things in the world
cannot be seen or even touched –
they must be felt with the heart.
~Helen Keller

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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.

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Useful Holiday Tips for Special Needs Families

Useful Holiday Tips for Special Needs Families

Useful Holiday Tips for Special Needs Families

This the season for holiday tips for special needs families. Today’s tips from guest blogger, Trish Shaeffer, who is mom to 3 very cute, very active boys with special needs have been field tested and declared both useful and successful.

Useful Holiday Tips for Special Needs Families

The holidays are a joyous time to spend with loved ones being thankful, giving to others, exchanging gifts and wishing for peace. I look forward to all of the wonderful things that come with the holiday season — but, having said that, I admit, it can be a difficult time for my special needs family. Routines and school programs change. Vacation, travel, visiting family and friends, and functions all have accompanying difficulties. There’s too much downtime, too much noise, and way too much food. To make the best of the season, I have come up with some useful holiday tips for families for special needs families:

  1. Leave some buffering time in your schedule. It is tempting to plan numerous visits, weigh your schedule down with gatherings and get involved in as many seasonal activities as possible to capitalize on the too-brief season. But this can be too much for your special family. Instead, plan for one or two special experiences (aim for quality over quantity) and make sure your child has plenty of restful time before and after an event.
  2. Bring your own food and supplies to gatherings. If your loved one is a picky eater or on a special diet, come prepared to holiday gatherings with your own food to maintain consistency. This is also a good idea for kids who have food allergies or are on tube feeds. Bring along favorite items that help calm your child, too, like iPads, books, stuffed animals, and weighted vests.
  3. Build in as much routine as possible. This is hard, but I try to keep consistent wake-up time, bedtime, and routines over the holiday break. I also try to maintain rules enforced during the school year. For instance TV and screen time remains limited. Also, meals are served around the same time.
  4. Plan activities for the holiday break. Ask your child’s teacher for activity ideas to reinforce what your child is working on at school. This can preserve continuity and reinforce lessons. You can also ask your child’s therapist if there are any activities to benefit your child between sessions.
  5. Schedule ample help. Take advantage of family togetherness and reach out for a little help during the holiday season! Your “mother’s helper” could be a grandmother, babysitter, local college student, paid nurse or other family member, or friend. Ask for help with your child’s routine or care, Christmas shopping, decorating, baking, cooking, cleaning or all the above. It’s a way to let others and give people who love you a chance to help in what can be a hectic time.
  6. Avoid crowds. Loud, frantic crowds can be too much for many of us and even more so for our special needs children. Shop during the hours or days that are less busy, or do your shopping online. If a huge crowd cannot be avoided, make sure to allow time for your child to decompress and relax before and after the hustle and bustle. This may help cut down on sensory issues as well as shopping headaches and heartaches.
  7. Keep calm. Keeping calm during chaos and resisting meltdowns helps children cope with the holiday sights and noises they absorb. Keeping calm is also good for your heart rate and your mind. So count to 10, go to your quiet place, or just have that second glass of wine. Taking mom time for yourself may be just what you and your child needs.
  8. Say no. You need to say “no” to anything that does not ultimately contribute to your own or your child’s well-being. Figure out which events and activities you must do, and let go of the rest.Simply explain that it will not work for your child or your family. If you decline an invitation, people who care about you will not be offended. Then, opt for a quite night at home instead.
  9. Take time for yourself. Maintaining a healthy state of mind helps you be a better parent. If you happen to come across me around town, kid-free and deep in a good book at a coffee shop, you’ll know I take my own advice seriously.
  10. Keep expectations reasonable. We want the holidays to be perfect for our family. Just cherish the time you do have and make the best of it instead of getting frustrated.
  11. Count your blessings. Raising a loved one with special needs is hard, and we may wish for a normal holiday season. Let the holidays be a time to realize the gifts we have been given — especially those we receive from our children. I am a better person because of my sons. This makes me feel very blessed indeed.

 

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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Trish Shaeffer mom of 3 active boys, a 9-year-old and 5-year-old twins who were born 2 months early and have special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Shaeffer.

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4 Tricks to Make Halloween a Treat for Your Child with Special Needs

4 Tricks to Make Halloween a Treat for Your Child with Special Needs

4 Tricks to Make Halloween a Treat for Your Child with Special Needs

Are you looking for tricks to make Halloween a treat for your kids with special needs? Guest blogger Trish Shaeffer offers these 4 tips to make costumes, the atmosphere, treats, and words fun for your child this Halloween.

4 Tricks to Make Halloween a Treat for Your Child with Special Needs

Most kids can’t wait to try on Halloween costumes and make their way through the neighborhood trick-or-treating. But for children with special needs, Halloween can bring new challenges. Their choices of costume or candy may be restricted so that Halloween is not always such a treat.

Though children may have limited mobility, a sensory processing disorder, a cognitive problem or a food allergy, they still can enjoy Halloween. Try these tricks to make the haunted holiday the right kind of scary.

  1. Make costumes work for your child. The traditional boo won’t do if your child’s costume includes a wheelchair, or your kids hate the feel of scratchy material, makeup, and masks. But never fear, you can make it work! Many online stores have costumes for kids with special needs or can even give you ideas on how to make your own. If your child uses crutches, a walker or a wheelchair, get creative! Even crutches can complement a costume. Just be sure the costume doesn’t  interfere with your child’s mobility.
  2. Prepare the senses. For kids with sensory processing disorder, candy, nippy fall air, running around after dark, costumes, or even the noises in the dark can be a challenge. To make sure your child can handle the night, try one of these tricks: Let your child stay at home and hand out treats. Or create a comfortable costume and practice wearing it beforehand. You should even practice the steps of what to say during trick-or-treating to prepare them for the night.
  3. Take the scare out of treats. If you’re terrified of trusting others to understand your child’s food restrictions, add a warning sticker, a shirt, or a print out to your child’s costume. You can find many ideas online at sites like Star Allergy Alerts. If you child has food sensitivities or allergies, you can also plan ahead to suggest alternatives like toys or all-natural candy. When in doubt, look for the teal pumpkins when going door to door. These pumpkins signify safe treats for children with food allergies. Look for local events that also offer trick-or-treating opportunities for kids with allergies.
    4. Provide wise words. For children with developmental or speech delays, you can make cards to hand out when they go door-to-door. These cards explain the issue to others so they can understand your child’s needs and offer a friendly hello even without a word from your child. There are many great ideas online for these cards.

I hope these tricks make Halloween a treat for your child. Have a Boo-tiful day and a happy Halloween. And feel free to leave your Halloween tips in the comment box, too.

 

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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Trish Shaeffer mom of 3 active boys, a 9-year-old and 5-year-old twins who were born 2 months early and have special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Shaeffer.

Author Jolene Philo

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The Teal Pumpkin Project: Halloween for Kids with Food Allergies

The Teal Pumpkin Project: Halloween for Kids with Food Allergies

The Teal Pumpkin Project: Halloween for Kids with Food Allergies

Guest blogger Jill Seaney wants every child to be able to celebrate Halloween. So her guest post explains what the Teal Pumpkin Project is, who it helps, and where to find resources.

The Teal Pumpkin Project: Halloween for Kids with Food Allergies

The Teal Pumpkin Project makes Halloween accessible for the one in every thirteen kids with food allergies. In the average classroom, two children have at least one known food allergy. Kids with food allergies are often left out of the fun because so many of the celebrations are centered around food. As a parent of a three-year-old who suffers from food allergies and cannot eat most food that is considered safe for others, I have invested a lot of time researching and coming up with fun food alternative ideas so that my child never has to feel left out. With Halloween approaching, I thought this was a great time to talk to people about the Food Allergy Research & Education (FARE) Teal Pumpkin Project.

The Teal Pumpkin Project helps make sure all children will come home on Halloween night or from Halloween events with something they can enjoy. Kids who have food allergies typically come home with a basket full of candy that they cannot eat. Its definitely hard explaining to a three-year-old that we have to throw all the candy out because it will make him sick. My hope is that through educating more people about the Teal Pumpkin Project, more people will offer non-food items and display a teal pumpkin so that all kids get to enjoy Halloween. Every child should be able to experience the joy and tradition of trick-or-treating!

Fortunately, FARE started the Teal Pumpkin Project to make it simple for everyone to help make Halloween special for kids that have food allergies.. All you need to do is paint one of your pumpkins teal, or buy a teal pumpkin (many craft stores sell plastic or ceramic teal pumpkins, too), and display it with your other pumpkins outside your home and then offer non-food treats. There are also signs that you can download and print from the FARE website that you can hang on your door or outside your home to let trick-or-treaters know that you support the Teal Pumpkin Project and have non-food treats to hand out. The link is included below. But remember, the best way to raise awareness is to have the teal pumpkin outside your home.

Remember to keep non-food treats in a separate bowl from the candy bowl to avoid cross contamination. How will you know which trick-or-treater has a food allergy and which doesn’t?

It’s as simple as asking, “Would you like a piece of candy, or would you like a prize?” Most children know that they have food allergies and will be so excited to go to a house and find something they can enjoy.

There are a lot of alternative treats to candy. Some examples are:

  • Stickers
  • Glow sticks, bracelets, necklaces
  • Bubbles
  • Mini Slinky
  • Bouncy balls
  • Finger puppets
  • Crayons, pencils, pens
  • Coins
  • Mini notepads
  • Mini flashlights
  • Whistles

The goal of the Teal Pumpkin Project is to help children like mine feel included in the fun of Halloween. I hope you will consider joining the movement as well and help all children have a very happy Halloween this year.

For more information on the Teal Pumpkin Project, please visit their website.
The Teal Pumpkin Project home sign can be downloaded here.

 

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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Jill lives in Tucson, AZ with her husband Jeff and their son Blake. She worked in Human Resources up until 2014 when her son was born with VACTERL Syndrome which included EA/TEF. Jill resigned to care for her son full time. Later he was also diagnosed with a Congenital Diaphragmatic Hernia and Eosinophilic Esophagitis. Jill’s personal blog (Beloved Blake) documents his surgeries and health challenges, their family struggles, and Blake’s milestones. Jill loves writing and teaching others about what it’s like raising a child with complex medical needs. She wants to be a blessing to other parents just starting on this journey.

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Mother’s Day Top Ten at Different Dream

Mother’s Day Top Ten at Different Dream

Mother’s Day Top Ten at Different Dream

Check out the Mother’s Day top ten Different Dream posts written for moms of kids with special needs by moms of kids with special needs. Grab a tissue and be ready for your heart to swell with the fierce love peculiar to moms like you and me.

#10: How to Breathe When You Can’t Let Go

Guest blogger Sarah Broady (who is also Different Dream’s virtual assistant and tech wizard) shares lessons she learned about how to breathe when you can’t let go while enjoying the Mother’s Day gift her husband gave her in 2016.

#9: To Grandma from Your Grandchild with Special Needs

Kathy Guzzo wrote her post for grandmothers of kids with special needs from personal experience and deep gratitude. If you and your child have been blessed with the support of a great grammy, you’ll want to pass this post along to that remarkable woman this week!

#8: Top 20 Reasons Moms of Kids with Special Needs Rock

This links to a favorite post by Ellen Seidman’s Love That Max blog. Her 20 reasons create the perfect Mother’s Day tribute to moms of kids with special needs.

#7: This Is for the Special Needs Mothers Who…

Guest blogger Stephanie Ballard published her first Mother’s Day poem for moms of kids with special needs in May of 2013, and it was an instant hit. For your reading pleasure, here’s the link to This Is for the Special Needs Mothers Who…

#6: How Can 31 Years Ago Seem Like Yesterday?

This post was written on the 31st anniversary of the birth of Jolene Philo’s son. It recalls the events of a day that became increasingly dire as his health challenges were diagnosed. All moms who’ve lived through similar circumstances, whether 3 years or 13 or 30, know that the anniversary of that day brings back memories that feel like they happened yesterday.

#5: Happy Mother’s Day, Special Needs Moms

A year after her first Mother’s Day poem appeared on Different Dream, she again recognized the day with a Happy Mother’s Day wish for special needs moms. In case you haven’t yet realized it, all Steph’s poems come with tissue warnings!

#4: The Place Where Joy and Grief Meet

Moms of kids with special needs know that Mother’s Day is one of those days where the joy and grief of parenting meet. Jolene wrote about that intersection in this reflection about becoming a mom.

#3: A Special Needs Mother’s Day Poem

Yup, you guessed it. Steph Ballard joined the Different Dream May fun with a third special needs Mother’s Day poem in 2015. Here it is…do you have your tissue ready?

#2: Mother’s Day Grace for Moms of Kids with Special Needs

The more Jolene travels, the more often she meets moms who feel like they don’t do enough and aren’t enough for their kids with special needs. This post is a reminder of the grace that makes moms of special needs enough and more than enough to care for their kids.

#1: The Heart of a Special Needs Mother

The ongoing needs of Steph Ballard’s son didn’t leave her time to write a Mother’s Day poem this year, so Different Dream’s rounding out the this Mother’s Day top ten with her post about the heart of a special needs mother which appeared in May of 2016.

Your Favorite Mother’s Day Top Ten Post?

Which is your fave Mother’s Day top ten post? Leave a comment about it below if you’d like. Happy Mother’s Day!

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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