Christmas Miracles of the Special Needs Kind

Christmas Miracles of the Special Needs Kind

by | Dec 9, 2013 | Different Dream, Holidays, Special Needs Parenting

Christmas Miracles of the Special Needs Kind

Guest blogger Stephanie Ballard and her sons are getting ready for Christmas. Today, she shares a poem about recognizing Christmas miracles of the special needs kind…and all year long.

Miracles

The hustle and bustle of the holiday season is upon us once again. It can be such a stressful time, with a never ending list of things to get accomplished. Let us remember to look for the Christmas miracles. They are evident everywhere…but easiest to see through the eyes of our children.

Outside the snow was falling
In a white, and wintry flurry,
Mom was baking cookies
And she seemed in quite a hurry.
The shopping was all finished
The tree was decorated
Tomorrow Christmas would be here
The children were elated.
And soon the youngest tapped his mom
His face…a bit forlorn
“Are miracles for real Mommy,
like when Jesus was born?”
“Of course they are,” his mother said
While picking out a book
.
“Miracles are everywhere
You only have to look.”

And so, he sat up in the chair
And snuggled in her lap
So cozy…warm and comfy
He was ready for a nap.
Then Mommy read the story
More important than the rest
About the Christmas miracle
Which still remains the best.
She read to him of Mary
Who said, “God’s will be done,”
Of how the angel told her
That she would have a son.
“
Do not be afraid,” he said
,
“You have found favor… thus
You’ll call your son Emmanuel
And this means, ‘God with us.'”
She read of all their struggles
Of no room at the inn
Of how we needed someone
Who could save us from our sin
Of how the very brightest star
Was shining far and bright
And shepherds got to witness
God’s miracle that night.
And wise men came to worship
This most amazing birth.
Then mommy closed the book and said
,
“God’s miracle on earth.”

“

Does God still perform miracles?”
the boy asked hopefully…
“I know he does,” his mother said.
“
Just look at you and me.
Why love, it is a miracle
,
as is determination
–
finding a reason to smile each day
in any situation.
Seeking to be hopeful,
treating each day as unplanned
.
a simple prayer…a thankful heart
.
Now do you understand?
Make each day a miracle,
keep your eyes open wide
for almost anything can have
a miracle inside.”

The child kissed his mommy’s cheek
as he had grown tired
.
His mother put him in his bed
Her heart had been inspired.
At times she found it hard to smile
when the long day was done.
But grace…had touched her heart today
through the words of her young son.
God still performs miracles
ff every shape and size
.
But sometimes the miraculous
lies right before our eyes.

Does Stephanie’s poem give you eyes to see the miracles–Christmas, special needs, and otherwise–right before your eyes? If so, give your miracles a shout out in the comment box.

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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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Out of the Box Special Needs Christmas Gifts

Out of the Box Special Needs Christmas Gifts

by | Dec 5, 2013 | Different Dream, Holidays, Special Needs Parenting

Out of the Box Special Needs Christmas Gifts

Finding the right Christmas gift for a child with special needs can be a challenge. In this post, guest blogger Kimberly Drew encourages parents to think outside the box before Christmas arrives.

How to Think Outside the Christmas Box

I don’t know about you, but I have found shopping for Christmas presents for our daughter with disabilities to be extremely challenging. There were several years where I had done all of my shopping for our other children, relatives, and even friends and had still not spent a penny on Abbey. I hate to admit that I still have a gift from last Christmas up in our closet that she has never even taken out of the box. Over the years there were a few toys that she actually liked, but for the most part things just get thrown around and broken. It seems like money just wasted. Looking back, I wish I had realized sooner that for Abbey, an experience is a much better gift than something she can unwrap.

For birthdays and holidays, I always get Abbey a few things that she needs. Usually clothes, socks, bibs, and the like. But then when it came to that “special gift,” I never knew what to buy. Around our daughter’s ninth birthday, a friend asked if we would be interested in giving Abbey a riding lesson as her birthday gift. What was meant to be a one-time experience has turned into a beloved hobby and therapy.

It’s amazing the things you can find to go along with a hobby like this! A helmet, riding pants, boots, and the list goes on. We were unable to afford this therapy on our own, and have asked in recent years for family members to chip in toward a gift certificate. They got creative about how to wrap it up. Abbey’s Aunt Diane used the logo from the riding center’s website to print out coupons. When Abbey went to her next session, she handed in her coupon with GREAT joy!  Many times our entire family goes to her therapy and sits on bleachers to cheer her on. She has perfected her wave while maintaining her balance on the horse, and especially loves to look at herself in the mirror along the wall of the arena. These moments are precious to me, and she loves every one of them!

When you grasp that the years with these precious children are uncertain, suddenly making memories together seems priceless. This Christmas, I’m reminding myself and all of you to re-evaluate what is important when it comes to gift giving. Is there a family experience your child might enjoy being a part of? Does your child have a hobby or place that they like to go that is just for them? Have you been afraid to try something new, like a dance class, because of your child’s disability?  This year, why not think outside the box and give it a whirl?

How Do You Think Outside the Box at Christmas?

How have you thought outside the box to come up with a just right Christmas present for your child? Leave a comment to help other parents climb out of the box, too.

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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have four amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s desire to write. In addition to being a stay-at-home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

Author Jolene Philo

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Scott Newport’s Special Needs Motto? DNR

Scott Newport’s Special Needs Motto? DNR

by | Dec 4, 2013 | Advocacy, Different Dream, Special Needs Parenting

Scott Newport’s Special Needs Motto? DNR

Guest blogger Scott Newport is the father of three kids: Chelsea, Noah, and Evan. Evan lived with Noonan’s Syndrome for seven years. Scott’s story will help you understand why Evan lived far beyond the two years life span his doctors predicted.

Scott Newport’s Special Needs Motto? DNR

Evan was a complicated kid with more than one diagnosis and a standing DNR order. For those who may not know what that represents, it is an acronym for Do Not Resuscitate. Evan’s heart was so sick the doctors told us if it ever stopped it could get very ugly trying to revive him. They left it in our hands to make a decision no parent should ever have to embrace.

Our family was back at C.S. Mott children’s hospital at the University of Michigan for a simple, surgical procedure to revise Evan’s trach site. He was ventilator-dependent requiring a small hole in his chubby neck allowing him to breathe. Our home care nurses had been having difficulties with weekly trach changes and were afraid to do the procedure alone. Penni and I learned to deal with the challenge but were not always around to help.

The morning of the procedure Evan spiked a fever and everyone soon agreed it would be impossible to continue.

“Well I guess we should just had back home,” I said during morning rounds.

The resident looked at me and said, “We need to do some tests first to make sure we know what we are battling.”

As the team shuffled out, I wondered how long we would be here. When Evan was born four years earlier at Mott and we had endured 252 days in the PICU leaving with a diagnosis of, “Children like Evan usually don’t live past the age of two.”

I immediately called my parents and a few other friends and told them the news of the canceled surgery and not to come. My next call was to Nancy, one of Evan’s cardiologists. She had always been an advocate for us and also had become a good friend. She asked me what I thought and I said, “Well you know Evan, no telling what’s going on with him but Penni and I are not too worried and hope to get out of here soon.”

Nancy told me to call her tomorrow with an update.

The next morning at rounds there was still no clear answers but Evan still had a fever, required a bit more oxygen and no one seemed to know what was going on. The wandering eyes of the medical team didn’t even have to speak for me to figure that out.

That night one of our home care nurses came up to visit us enjoying the hour it took to rock Evan asleep. As we sat in the four bed ventilator ward with other families just like ours behind pulled curtains, we discussed our desire for Evan to go home where we could take care of him. If he did end up getting really sick and looked like he may die we wanted him in our home ICU where we all felt most comfortable.

The next morning got a bit more frustrating, as by then, even the attending physician was not sure why Evan was sick and wanted to do more test. Again I brought up the going home issue but they continued to press it was impossible.

Starting to get angry I walked out of the room and called Nancy. “Hey Nancy we want to go home but no one is listening.” She then said something I will never forget and was able to use again and again for the next few years on our families behalf. She said, “Scott, tomorrow at rounds ask them this…”

Well tomorrow came and as it was my turn to speak I said, “Hey guys, what are you doing here in the hospital we couldn’t do at home?”

As you can imagine everyone looked at each other and then the attending doctor said, “Well Scott and Penni, I’m sure you guys are probably better than us at taking care of your son. Let’s see if we can’t get you discharged this afternoon.”

It was great and even our bedside nurse said she had learned something that day also and giggled as she started to do her morning work with Penni to get Evan ready to go home.

And yes, as soon as the team of residents, fellows, a respiratory therapist, social worker, charge nurse, and the attending left, I called Nancy. I could almost see her smile through the phone as I thanked her and thanked her for all she had done for our family for the past four years.  She just came back with, “You know Scott I have always thought of your family as special and will always be there for you guys.”

Remember in the beginning when I told you about Evan’s DNR status? Well, our family has our own definition for that acronym. In fact the day after we had to sign that order, when Evan was about eleven months old, I took a piece of paper of paper toweling (also know as hospital stationary) and a blue marker from the nurses’ station. Then I had this acronym posted on his PICU glass door for all who entered our world:

Do
Not
Retreat

Not everyone who passed that sign back then got it, but almost all of them, if I asked today, would agree the sign was a good thing, making us better partners with patients and families.

Has your child been hospitalized? During that stay, did you employ Scott’s DNR acronym? If so, leave a comment about how you

Did
Not
Retreat

in the box below.

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Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.

Author Jolene Philo

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13 Key Special Needs Issues for Families to Address

13 Key Special Needs Issues for Families to Address

by | Dec 3, 2013 | Books and Resources, Different Dream, Special Needs Parenting

13 Key Special Needs Issues for Families to Address

Today’s guest blogger Douglas Baker is a national speaker, consultant, advocate, and specialist for the autism and special needs communities. As a parent of an adult son with autism, he has over 20 years of experience guiding and navigating families through interconnected services, resources, agencies, professionals, and planning demands. He stopped by to share his baker’s dozen of key issues parents need to address, though not all at once.

13 Key Special Needs Issues for Families to Address

  1. Get a proper diagnosis and assessments early. These are the building blocks for successful early intervention, IEPs, ongoing evaluations, services, support, benefits, management, and living options.
  2. Accept your child. Accept yourself. Accept this community. There are thousands of us. Just like you. Some may have more financial means, but we all have many of the same needs, challenges, and concerns. Sometimes scared, upset, and trying to understand, learn more, live a life, rebuild our dreams, and thrive.
  3. Get a special needs advisor in your inner circle. We get it. We are air traffic controllers who coordinates your landings, gates, baggage, and safety. We work with your whole picture as it changes with services, resources, professionals, legal, financial, and sound strategies specifically for your family’s needs.
  4. Stand up for what you know are your child’s needs and be willing to fight them. Hiring experienced professionals may and will most likely be necessary. Some families have the financial means pay for services outright…DON’T ! Big Mistake… Make the schools, agencies, and organizations responsible provide these resources and services to clear the path for those less fortunate families that deserve those services but could never afford that fight.
  5. Make strategic financial, special needs, and legal plans. Life insurance is not the end all answer to planning. Attorneys sell trusts (estate and special needs) and planning, but do they know your whole picture? Do they understand, specialize and do special needs work all the time? There are poachers in many professions preying on our vulnerability. Go back and read number 3 above. Be prepared for what’s coming and expect changes to happen.
  6. Create an Instruction/Care Guide/User Manual/Letter of Intent. Clearly identifies your child’s skills, traits, likes, routines, preferences, and more. This provides a road map to new service and care providers, as well as guardian transference. Today’s electronic versions can be easily updated and stored with other important documents, pictures, videos, and recordings.
  7. Get the basics covered—Will, Estate Plan, and Special Needs Provisions. Centralize these with your own medical directives. All these documents should be included for safe keeping and easy access, physical and electronic versions along with offsite copies). Probate is an expensive answer to not being prepared. The last thing you want is courts and lawyers spending tens of thousands of dollars making decisions far and away from what you wanted or intended.
  8. Be willing to ask for help. Don’t go at this alone. That is a huge part of our service. There are associations, parent groups, organizations, and foundations. We help you find the advocates, services, and professionals that do this effectively and efficiently. Hire the best you can afford. Although the best aren’t always the most expensive. There are some free legal service organizations available for those families that qualify.
  9. Support your special needs community members first wherever possible. Find, use, and support the businesses, services, professionals, and organizations run by special needs families or highly supportive others. This is how we serve, support, grow, and give back to build a stronger and self-sustaining special needs community of which we are a part. That also includes professionals who are making their living from these special needs families and organizations.
  10. Pay attention to the entire family’s needs. Don’t get lost in the special needs vortex. Minimize the lopsidedness as much as possible, and make time and events for the other non-special needs family members.
  11. Remember ME time. A healthy happy parent is much more valuable to their family members. Respite and separate quiet or fulfilling time and events are okay and necessary.
  12. Show appreciation to the people and professionals instrumental in helping your child progress. They are invaluable to your family. Let them know often as they cannot hear these words of appreciation enough.
  13. Make active charitable contributions. Making contributions during your life allows you to see and participate in community benefits. Legacy/gifting plans are wonderful extensions to be remembered by as well and vital to many serving non-profits as well.

Your Key Special Needs Issues?

What are your family’s special needs issues? If you ‘d like to add them to the list, 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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Douglas Baker is an educator, writer, and community catalyst who understands and integrates the legal and financial strategies for those with autism and other special needs. You can contact Douglas at 949.300.5035 or at his Facebook page.

Author Jolene Philo

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Special Needs Holiday Lesson 3: Boundaries

Special Needs Holiday Lesson 3: Boundaries

by | Nov 27, 2013 | Different Dream, Holidays, Special Needs Parenting

Special Needs Holiday Lesson 3: Boundaries

Guest blogger Rebekah Benimoff is back with the final installment about what families of kids with special needs can do to make the holiday season enjoyable and meaningful. In today’s post, Rebekah describes how she sets boundaries to meet the needs of her family and honor their faith.

Special Needs Holiday Lesson 3: Boundaries

While many people are running from event to event this time of year, due to the crowds, we don’t. This has multi-level perks. First, my husband, who has PTSD, my younger son, who has SPD (Sensory Processing Disorder), and even my older son, who has type one diabetes and digestive issues are each (much) less anxious. Tyler’s blood glucose levels are even more stable, due to lower stress and fewer food differences when we simply do less.

Second, it brings opportunities for us to bond as a family unit. While everyone else is chatting with long lost Great Uncle Charlie, I am getting to know how my sons are changing as they grow up. There is an intimacy that develops when we opt out of larger gatherings. And I’ve found that I need quiet times as well, if I am going to ever find Peace On Earth.

There are still family expectations, and we do travel to see my husband’s family and mine. But I have stopped trying to please an entire community of people by sacrificing the well being of those I am called to care for.  We place boundaries that allow us to meet each of our needs, including my own.

When we do choose to attend a gathering, I plan options to get away if needed, I bring alternative food choices with us, and I work to maintain boundaries that we have carefully set up over the years. It’s not perfect, and it may not make everyone happy, but when I release the need to please and focus on caring for those God has entrusted to me, I can actually enjoy the holidays—and even our many differences.

How do you set appropriate boundaries for your family during the holiday season? Leave a comment.

Special Needs Holiday Lesson: Part 1
Special Needs Holiday Lesson: Part 2

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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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).

Author Jolene Philo

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Special Needs Holiday Lesson 2: Pray Through It

Special Needs Holiday Lesson 2: Pray Through It

by | Nov 26, 2013 | Different Dream, Holidays, Special Needs Parenting

Special Needs Holiday Lesson 2: Pray Through It

Welcome back for Part 2 of guest blogger Rebekah Benimoff’s series about ways to make the holiday season enjoyable and meaningful for families raising kids with special needs. In today’s installment, Rebekah explains how prayer gives her a different perspective when holiday stress invades her spirit.

Special Needs Holiday Lesson 2: Pray Through It

Since my family has quite a few special needs beneath one roof, our family does things differently than others I know. My husband has PTSD, and he has difficulty dealing with crowds, so he does not attend large group holiday events. Everyone else is with their spouse, but there are times when half of me is missing.  I feel sad, and I’ve realized in recent years that there is a grieving that must be done. Some of our differences are still hard, and giving myself permission to be sad is not only freeing, but healthy.

One way to be set free from overwhelming stress and regret is simply to address the issue. We have chosen to do things differently than how it was done when I was growing up—for our own wellness. I’ve learned to own that choice, while admitting the sadness, and to surrender each and every issue through focused prayer.

My prayers look like this: Father God, I am feeling sadness because _________. I also feel __________________ (left out, lonely, stressed, etc.) Help me to admit these feelings and release every fear. Show me what you want to deal with now, in this moment.

I list out each fear, each sadness, each concern that comes to mind. Then I visualize an altar. I make the conscious choice to place everything on that altar (sadness, anxiety, people pleasing, perfectionism, etc.) being very specific—and then I visualize surrendering each issue God, one by one.

Then I visualize God’s big, capable hands gently lifting everything and tenderly cradling me to his heart. I recognize that God has called me to walk a different path and I claim peace with my decision to choose the path he has carved out for me as I care for my special needs family.

How does prayer give you a different perspective about God and holiday stress? Leave a comment.

Special Needs Holiday Lesson, Part 1
Special Needs Holiday Lesson, Part 3

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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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).

Author Jolene Philo

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