3 Things to Do When the Special Needs Parenting Life Is Not Fair

3 Things to Do When the Special Needs Parenting Life Is Not Fair

by | Jan 21, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

3 Things to Do When the Special Needs Parenting Life Is Not Fair

During my early years as the parent of a child with special needs, I never would have confessed my deep-down feelings. Because, deep down I thought God wasn’t being fair to my child. Or to me.

God wasn’t fair to allow my baby to suffer when other babies his age were thriving.
He wasn’t fair to fill my first four years of parenting with sleep deprivation.
He wasn’t fair to allow us to live hours from the nearest hospital.

My list of complaints against life and God grew exponentially, and I didn’t know how to stop adding to it. I could have used the tips Laurie Wallin shared in a post at her blog. Here’s what Laurie would have told me to do when life is not fair:

Tip #1: Rest More

Why is rest essential? Because Jesus modeled the importance of rest in his time on earth. As Laurie says in her post, “Before AND after major moments in ministry, he and his closest friends withdrew away from the crowds for some rest and quiet.”

Tip #2: Breathe Prayer

Citing 1 Thessalonians 5:17, Laurie advises unceasing prayer when life seems unfair. Inhale unfair circumstances. Exhale prayers. An old friend of ours calls those quick yells for help arrow prayers—very pointed, very focused, very fast.

Tip #3: Fight Back

Finally, Laurie encourages those struggling to accept the unfairness of life to fight back. And she suggests three strategies to fight back:

  • Memorize scripture.
  • Enlist friends to help.
  • Find other resources to help.

Laurie’s ideas would have been a godsend when I was a new parent. May they be a godsend to you today!

How Do You Fight Life Is Not Fair Thinking?

Do you have tips to add to Laurie’s? Leave them in the comment box, and I promise to pass them on to Laurie…and other parents like you and me:)

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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. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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Becky Hallberg’s Special Needs Resolution: Trust

Becky Hallberg’s Special Needs Resolution: Trust

by | Jan 17, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Becky Hallberg’s Special Needs Resolution: Trust

Is January really half over? It must be true, since today’s guest post from Becky Hallberg marks the halfway point through Different Dream’s 2014 special needs resolution series. Here’s what she has to say about her resolution for 2014.

Trust

As the parent of a special needs child, I have to trust a lot of other people with various aspects of his care. Some of those include his pediatrician, several specialists, his therapists, and his school team. I trust them to have answers for my questions, solutions for his problems, and the ability to meet his needs. I listen to all they say. For the new year, though, I am resolving to listen more to my son.

My son is 9 ½ years old and has Asperger Syndrome and sensory issues. Part of his therapy is to work on his understanding of language, and he is doing very well with this particular therapy.

But as his mom, I find that I still view him as the 5-year-old who was just starting this therapy journey. He needed me for everything—for personal needs in caring for his physical well-being, to emotional needs, understanding others, and being understood in life.

He has learned so much and grown in so many ways, and I realize that my perception of him is probably hindering his growth in some ways.

The fact of the matter is that we’ve made a significant jump—one from where he needed me for almost every part of everything he did, to now when it seems he hardly needs my help for most of his day-to-day activities.

He has gained tools to help him be successful in his day-to-day life. He has learned to ask questions, to listen to the words others use, to (occasionally) notice their facial expressions, and (sometimes) how to put all those things together.

I need to trust in the tools he has received, from those I have trusted to provide him with the tools he has needed. Enough people in his life know how he struggles and know how to help him work through situations.

I will try to trust all of the tools my son has in place to make his daily life more successful. I intend to see my son as the young man he’s becoming, and to help him grow into that part of his life. I resolve to trust my son as he speaks up more for what he can do, as he speaks out more for who he is, as he shares more of his likes and dislikes.

For 2014, I resolve to trust in my son!

How About You?

Do Becky’s words hit home? Is there some way you need to trust your child with special needs? Leave a comment to share your resolution if you like.

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’s Special Needs Resolution: No More Fairy Tales

Stephanie’s Special Needs Resolution: No More Fairy Tales

by | Jan 13, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Stephanie’s Special Needs Resolution: No More Fairy Tales

Welcome to Part 3 of Different Dream’s 2014 Special Needs New Year’s resolution series. True to form, guest blogger Stephanie Ballard offers her resolution as a poem. Enjoy!

                                       Fairy tales are more than true;

not because they tell us that dragons exist,

but because they tell us that dragons can be beaten.

~ G K Chesterton

I think if this previous year has taught me anything, it is this: Life isn’t meant to be a fairytale. (If it were, would we really learn anything of value?)  Becoming the parent to a child with both chronic health and behavioral issues has never been easy. If I were to be honest, there have been moments when I wish that things could be different. I have been known to have this idyllic idea in my mind about how life was supposed to turn out. I am certain that I never imagined financial hardships, frequent doctor’s appointments with my special needs child, or a less than perfect marriage. And then I watch as my son makes the most serious of his specialists crack an unprecedented smile in the hospital elevator. I hear him singing the words, “I am Yours,” while he’s lying in his bed thinking no one is watching, and I feel his tiny hands rubbing my hair when I’ve had a long, stressful day. He is always happy, and he loves people with a depth that I have yet to understand, or emulate.

            If I were to make a New Year’s resolution for 2014, it would be this:

Let go of the fairytale, and embrace the story being written before your eyes.

Dragons and all.

The Fairy Tale

I once asked for the fairy tale
Complete with a white horse
But life is unexpected
It takes an unknown course.

I would put on my Barbie heels
My bracelets, pearls… crown
A dash of mommy’s lipstick
My fancy most grown up gown.

And everything was magical
A place where all daydreams come true
And in this perfect “pretend” world
I always knew just what to do.

With one dash of my magic wand
My fairy Godmother would show up
But real life just isn’t that easy
And someday we all have to grow up.

And life’s responsibilities
Amidst the turmoil and laughter
Remind me to look for the small things
To find my happily ever after.

And all of my preconceived notions
About how life should have turned out
Leave me feeling overwhelmed
And just a little burned out.

I once dreamed that I was a princess
Awaiting my most noble knight
He would slay every dragon to save me
Our life would be just perfect…right?

The truth is marriage sure takes work
And it can’t be revived with one kiss
It’s a challenge to hold it together
Real life doesn’t end with such bliss.

When things get tough, I lose myself
And some days I sure find
That I am one small step away
From losing what’s left of my mind.

I got no invitation
To the Prince’s Royal Ball
The clock struck midnight way too soon
And the glass slipper won’t fit at all.

Perhaps as we get older
We need to seek anew
To find the fairy tales of life
In what we say and do.

In the laughter of our children
In the hope for a brighter tomorrow
In the silent, still small voice of God
Amidst all the heartache and sorrow.

Life has no perfect endings
Sometimes it’s hard to see
The unnoticed, everyday blessings
That mean the most to me.

And when I feel a little sad
About the things I’ve missed
I try to find the fairy tale
That does in fact exist.

It’s not the way I’d imagined
Nor what I had hoped for
But some things come into your life
To bring you so much more.

~Stephanie Ballard

What fairy tales has your special needs parenting experience caused you to release? What New Year’s resolution do you want to make? Leave a comment.

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.

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Kimberly Drew’s Special Needs Resolution: Dear Self

Kimberly Drew’s Special Needs Resolution: Dear Self

by | Jan 10, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Kimberly Drew’s Special Needs Resolution: Dear Self

Today’s post is the latest installment in Different Dream’s 2014 Special Needs New Year’s Resolution series. Guest blogger Kimberly Drew writes a light-hearted letter about her resolutions for the next 12 months.

Letter to Myself

Dear Self,

Please do your best in 2014 to pull it together.  The following are just my humble suggestions in an attempt to help you do that.

  1. Stop crying so much…it’s ridiculous and extremely unattractive!
  2. A pen. It’s called a pen. Pick it up and write down your commitments with it. It will revolutionize your life.
  3. Since they do not make a binky-clip for your phone, I would recommend keeping it in a single spot so that you can find it. Also, the charger is in the second drawer of the desk. You could, periodically, choose to plug your phone in. Just a thought…do what you like with it.
  4. Facebook has potential to be evil. There is this really helpful feature called “HIDE so and so from your newsfeed.” They won’t know you did it, and you will be better for not hearing their drama or how self-obsessed they are. Not everyone can run 6 miles, bake a cake, clean their house, do their hair, read the Bible, and put dinner in the crock pot before 9 am. Seriously? You don’t need the added pressure to be perfect.
  5. CALL. YOUR. MOTHER
  6. There is a reason everyone compliments your hair when you do actually do it. Some genius worked really hard to invent the hair dryer–USE IT!
  7. Rest. You are all around a nicer person and more productive when you get eight full hours of sleep. You’ve been this way your whole life, don’t try to fight it!
  8. Take the word “sure” out of your vocabulary and replace it with the phrase, “I’d love to but I can’t. Thanks anyway.”
  9. Smile more and love more…now, THAT’S what makes you attractive.

Sincerely,
ME

What Would Be in Your Dear Self Letter?

Which of Kimberly’s resolutions would make it into your Dear Self letter? What would you add? Leave a comment.

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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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.

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Mom’s Confession: I Have Special Needs, Too!

Mom’s Confession: I Have Special Needs, Too!

by | Nov 18, 2013 | Different Dream, Self-Care and Stress, Special Needs Parenting

Mom’s Confession: I Have Special Needs, Too!

 

Guest blogger Becky Hallberg says kids with special needs aren’t the only people who have special needs. Parents of kids with special needs have some specific N.E.E.D.S., too. In this post, she explains what those N.E.E.D.S. are.

I Have Special Needs Too!

As the parent to a special needs child, I am always considering my child’s needs in every situation. I need to know if he’ll be safe in a given situation, or if he will need extra help or accommodations. As I walk this journey, though, I’m noticing something different—I have special needs, too.

The term “special needs” doesn’t have to be used to describe just one type of people. Rather, I believe we all have special needs and they vary from person to person. Sometimes our special needs are, indeed, related to areas where our kids need extra help and support. Other times, though, I think we need to use the term “special needs” a little more often to celebrate our uniqueness.

As we started this journey with our son, I was able to note some special needs in my own life. These were areas where I needed extra help and support. They were:

N—a Name for what my guy was struggling with.  When we started this journey, I knew that there may or may not be a name for what my child struggled with. We continued to pursue every avenue available to us to make sure we were meeting all the different aspects of his needs. It turns out that what he struggles with does have a name, and that makes it easier to work with him, as we know what direction to take.

E—Empathy helped so much, to be able to find those walking a similar path, to pray together, to share successes, to protect one another when we were in the trenches. These people understood the “how’s” and “whys” of my daily life and could truly “get us” as a family and could understand me as a mom.

E—Encouragement sometimes came in the form of growth we saw in our son. Other times, encouragement came from the simple smile of another mom who seemed to know, innately, what I was struggling with as my child crumpled under the weight of another meltdown.

D—Daily Strength and other days Down Time. Daily strength took on a whole new meeting as I struggled through parenting a child with special needs. Down time became so important, as I learned the necessity of taking care of myself as well.

S—Savior. We all need a Savior, don’t we? We need someone bigger, stronger, more powerful, to take our burdens to. We need someone who can hold the pieces of our world when it seems like all is falling apart.

These were my “special needs” as I started on the journey of parenting my child with special needs.  When I look at my needs, in light of my child’s needs, there aren’t very many differences.

  • My son thrives when he can name things—his emotions and feelings, his plan for the day, his needs and wants.
  • He has a need for empathy—for those who are in his life to really know and understand how *he* functions in life.
  • He needs encouragement—and really, who doesn’t?  He responds best to kind words, thoughtful deeds, and a reminder that he is loved!
  • He seems to have an extra dose of daily strength—I’d love to bottle some of his energy! But he definitely benefits from down time, from time to rest, to be able to do his own thing, to not have to live inside anyone’s therapy rules or school constraints.
  • And, he needs a Savior—This is the one I’m most excited about, out of this list of NEEDS. He seems to have a deep love for Jesus and he is beginning to share this with others, particularly his therapists.  How amazing is that?!  I hope to instill techniques into his life that will help him succeed in life, and somehow, by God’s grace, we have managed to instill a deep love for God.  He’s taking that love and sharing his Savior with those in his circle of influence. Amazing!

Special needs. We all have them, and when we’re honest about what they are, it doesn’t seem that they apply just to a particular group of people. Special needs aren’t based on ability, IQ, or any other measure the world uses. Special needs are based on the fact that, at the end of the day, we’re all human, and we were made to need a Savior. That is the most innate special need that we all have.

What are your needs? How do your needs compare to your child’s needs? Sometimes it helps to take our eyes off of ability, test scores, necessary accommodations, and just remember that our one, true, special need is Jesus! Dear friend, do you know Him?

What Special Needs Do You Have Today?

What special needs are you struggling to meet today? Leave a comment so we can pray for you.

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Self-Care for Special Needs Moms: Stop and Smell the Flowers

Self-Care for Special Needs Moms: Stop and Smell the Flowers

by | Oct 22, 2013 | Different Dream, Self-Care and Stress, Special Needs Parenting

Self-Care for Special Needs Moms: Stop and Smell the Flowers

Sylvia Phillips knows what it’s like to care for a child with multiple special needs for years and years. In today’s guest post, she talks about a self-care practice she wishes she had instituted much earlier in her care-giving experience.

Remember to Stop and Smell the Flowers

Parents of special needs kids have a lot going on all the time. Getting our kids to any number of a variety of therapy appointments, doctor appointments, specialist appointments, getting referrals, contacting insurance companies, keeping prescriptions straight, picking up medications, attending IEP meetings, keeping track of respite hours used, and a whole host of other important things are enough to drive even the most laid back parent into a frenzy of anxiety! I know because I’ve been there and done that!

Those are all good and necessary things that we must do for our children. It all comes with the responsibility of being entrusted with a special needs kid.  It’s just the way life is and we accept that. We carry on and do what we’ve got to do.

Recently though, I’ve realized that I always feel rushed. I’m always hurrying and scurrying to finish eating my meal before Bethany needs me. I’m always rushing through shopping trips before Bethany has a seizure. I always hurry to complete my tasks before I need to get Bethany to an appointment.

I keep telling myself that we can enjoy life later sometime in the future when somehow everything will fall into place and we will be able to stop and smell the flowers.

You’re cheating yourself out of today. Today is calling to you, trying to get your attention, but you’re stuck on tomorrow, and today trickles away like water down a drain. You wake up the next morning and that today you wasted is gone forever. It’s now yesterday. Some of those moments may have had wonderful things in store for you , but now you’ll never know. ― Jerry Spinelli

Stop the world. I need to get off now! I need for my family to somehow begin enjoying at least bits and pieces of our lives right now! We are missing out. We parents of special needs children must find moments of enjoyment to share with our families right in the here and now. We must find moments of joy in between doing all that other necessary stuff!

You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this. ― Henry David Thoreau

I for one, don’t want to spend the rest of my life merely existing while waiting for something better. I want to create something better right here and now!

I need to sit outside in the backyard and listen to the song birds sing.
I need to take my kids for a walk in the woods, through the flower garden, or across the beach.

When my child has an appointment in the city I can set aside an extra hour or two, pack up all the kids and take them on a fun outing to the zoo, the children’s museum, or the science museum. If there’s not enough time for something like that perhaps we can just go to the park to play, picnic, and enjoy nature in the great outdoors for just a little while!

We are always getting ready to live but never living.–Ralph Waldo Emerson

I don’t want to waste another minute of my life. I don’t want to waste another minute of my family’s lives. Right here, right now today I choose to live life to the fullest to the best of my ability!

Do You Need Time for Self-Care?

How about you? Could you use some time to stop and smell the flowers? Or have you figured out a way to practice self-care? Your thoughts are welcome. Leave a comment.

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