To Grandma from your Grandchild with Special Needs

To Grandma from your Grandchild with Special Needs

by | May 7, 2015 | Different Dream, Holidays, Special Needs Parenting

To Grandma from your Grandchild with Special Needs

Much of Mother’s Day week at Different Dream is devoted to moms of kids with special needs and rightly so. But today’s post is devoted to the grandmas who embrace their grandchildren with special needs and offer invaluable support to mommies. To honor grandmas, whose grandchildren can’t say how they feel, grandma and guest blogger Kathy Guzzo wrote this letter to grandma from a child with special needs for them. Grandmas, this one’s for you.

To Grandma from your Grandchild with Special Needs

Hi Grandma,

It’s hard for me to find the right words, so I decided to write you a letter. Well, Mommy is writing what I say, since it takes a long time for me to write letters that mean words.

I like you, Grandma, because you make Mommy and me feel special. You don’t make me feel like I’m bad, or make fun of me, or yell at me. Instead of making me play games I don’t want to play, you’ll join me in what I’m doing. You don’t ask me a lot of questions and are okay when I answer yes or no. Somehow you know whether or not I want to talk. Talking is so noisy, but I feel safe having someone just sit in the room with me. Sometimes it calms me down.

I like what you do for Mommy too. When you hug and laugh with her, she smiles on her face. Mommy doesn’t show her smile very often. It’s pretty. I like when you bring different foods over, even when I don’t like them. I’m a picky eater, but you bring Mommy’s favorite. Mommy likes when you talk about when she was little or ask her about the books she’s reading instead of talking about me. And boy does she love white daisies. That’s probably why you bring them to her sometimes. You’re nice to help Mommy with all her jobs around the house. When you help, she gets done faster and doesn’t seem so tired.

I like it when you come over and then Mommy leaves, too. Because sometimes Mommy and I just need to be apart for awhile. Besides, when it’s just you and me at home, we have fun. When mommy comes back it’s like she took a nap. I don’t want mommy to be tired all the time.

Mommy told me that you are her mommy. Mommy doesn’t lie so I know it’s true. Thank you for being her mommy.

I’m out of words and Mommy’s crying a little. Even though she’s smiling, too.

I love you, Grandma!
Your Special Grandchild

Have You Written to Grandma from your Grandchild with Special Needs Yet?

If you haven’t yet, you should. Because I’ve been a grandma for 2 1/2 years now and know much grandmothers love to hear from their grandkids. Whether it’s a card, a letter, an email, Skype or Facetime, or in person, remember your kids’ grandma this Mother’s Day. Or leave a shout out in the comment box for a grandparent who’s making a difference in the life of your child with special needs.

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Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. One of her daughters was diagnosed with lupus and Epstein Barr Replication as a young adult. Another began struggling with depression and OCD in her mid-twenties. She understands the need for her daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct others to the peace and hope that God has abundantly available for them.

Author Jolene Philo

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A Special Needs Mother’s Day Poem

A Special Needs Mother’s Day Poem

by | May 6, 2015 | Different Dream, Holidays, Special Needs Parenting

A Special Needs Mother’s Day Poem

Mother’s Day is a lovely holiday, but it can sometimes be bittersweet for moms raising kids with special needs. Guest blogger, Steph Ballard, who understand bittersweet very well as mom to a son with heart issues. She’s back again this year with another special needs Mother’s Day poem just for you.

And Then Came You

I thought I had it figured out
This thing called motherhood.
With all of my what-to-expect books on hand
I just knew I’d do all that I should.
I’d learn to rock a cranky child
Into sweet and endearing compliance.
I’d know my child’s every cry–
Hey it’s not rocket science.
You’d take your bottle eagerly
While snoozing in delight.
I’d have the Gerber baby,
Of course he’d sleep all night

And then came you…
And all my plans unraveled
As we took our first steps
Down a road much less traveled.
A life of not knowing
What each new day brings
A constant reminder
To cherish all things.
I thought I possessed all I’d need
To see me through this life–
Laughter, love, joy, and faith–
Does anyone need strife?
Of course I’d face some obstacles
Along the weary road
But surely I was strong enough
To carry any load.

And then came you…
Leaving me so unsure
As I watched all the trials
That you had to endure.
I realized the things
That I’d hoped to achieve
Were all put aside
As I learned to believe.
I knew it would be difficult
To wonder everyday–
Will my child grow up?
Will he be okay?
Will I make the right choices…
Will I make mistakes?
Lord, I know you chose me but…
Do I have what it takes?

And then came you…
With a gentle reminder
That life can be tough,
And I need to be kinder.
That every life matters
And just one small deed
Can change many lives
By just planting one seed.
And yes, I struggle often
And yes, I question still
At times I want what I want
And wonder what’s God’s will?
And then we brought you home at last.
Now life would be complete–
Imagine my surprise to find
My child would not eat.
Each milestone that you would reach
Would come at your own pace
I was learning patience
As life…is not a race.
I thought I knew myself so well
I guess that I was wrong
For in my time of weakness
I found out I was strong.

And then you come…
Running toward me with joy
Your laughing at something,
My mischievous boy.
You reach for my face,
As you so often do…
“Why you smiling Mama?”
“I’m smiling at you”.
I thought I had it figured out
This thing called…Motherhood
And then came you…to change my heart
Surely God is good.

~Stephanie Ballard

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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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Love, Marriage, and Special Needs

Love, Marriage, and Special Needs

by | Feb 13, 2015 | Different Dream, Holidays, Special Needs Parenting

Love, Marriage, and Special Needs

Tomorrow is Valentine’s Day, a holiday devoted to the symbols of love…chocolates and flowers and diamonds. Maggi Gale goes beyond symbols to the very heart of love in this guest post in her look at how to love when you and your spouse respond differently to a child’s  special needs.

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud…

Beautiful poetry for Valentines Day? Yes, but much more, too. It’s a demanding definition of practical love.

But how can anyone live this way
in the home,
in marriage,
with the extra stress of special needs parenting thrown in on top?

A few general differences in dealing with stress between men and women are worth taking into account. Of course we are all unique, and we don’t always fall into neat categories, but as Psychology Today points out, under stress men and women tend to react differently. Men tend to operate in the fight or flight mode, whilst women normally tend and befriend.

Marriage and Special Needs Stress Responses

I don’t know how true this for other people, but it was certainly true for us when we first heard the news that our daughter was EA/TEF. For my husband, fight took the form of frenetic activity. He was arranging this and organizing that, as if he was fighting the very very diagnosis itself. And his flight was … walking. This same man, who has had a lifelong dislike of walking anywhere, suddenly couldn’t keep still. He walked everywhere, until his trousers began to hang off him, as he processed the stress and shock of preceding weeks.

Meanwhile, I was left, of course, holding the baby. Just as well tend and befriend kicked in for me.

It does not envy, it does not boast, it keeps no record of wrongs…

Psychology Today goes on to state that the classic, contrasting responses may boil down to a single gene. Men have the SRY gene on their chromosome causes this fight or flight response. Women, on the other hand, don’t have this gene. The physiological changes happening in us women under stress involve several hormones: estrogen, oxytocin and endorphins. Together, these hormones alleviate pain, motivate us to befriend and make us feel good about social interactions. Just as well, in my case, because that’s just what I needed after our daughter’s special needs diagnosis.

Marriage and Special Needs on Valentine’s Day

Valentine’s Day is a great day for reflecting on love–real love–and how we can live in it. One important lesson for me has been to understand that my husband and I are different. We process many things differently, including the stress of bringing up a child with special needs.

This calls for generosity,
in giving each other a lot of space;
this calls for true love.
Maybe not the red roses and box of chocolates type of love,
but something deeper,
more demanding, yes,
but also more enduring.

…And now these three remain: faith, hope and love. But the greatest of these is love.

This Valentine’s Day, as parents of kids with special needs, let’s try to give each other the space we need to be different. Let’s put that love into practice today and all year long.

And when all else fails, remind yourself that the differences between you and your spouse are all in the genes.

What Do You Think?

What do you think of Maggi’s explanation of the differences between the responses of husbands and wives to a special needs diagnosis? What are your thoughts about love, marriage and special needs parenting? You’re invited to share them in the comment box. Happy Valentine’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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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

Author Jolene Philo

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5 Special Needs Tips for a Happy Holiday

5 Special Needs Tips for a Happy Holiday

by | Dec 8, 2014 | Different Dream, Holidays, Special Needs Parenting

5 Special Needs Tips for a Happy Holiday

Guest blogger Sylvia Phillips knows that happy holidays aren’t a given for special needs families. In this post she shares 5 special needs tips for a happy holiday she has used successfully with her daughter, Bethany. They are yours to tweak so your Christmas season is as happy and blessed as it can possibly be.

5 Special Needs Tips for a Happy Holiday

Many families with special needs members dread the coming of the holiday season. Changes in routine, traveling, large and crowded family gatherings, noisy celebrations, and even unfamiliar smells coming from the kitchen or other people can all wreak havoc on our kid’s sensitive systems triggering extreme sensory overload and major meltdowns.

My special needs daughter Bethany, is an extreme creature of habit and a total control freak! She wants her routine to always be the same, and she wants every person in her life to always be in the place that she has designated to be theirs.

Changes in routines–hers and everyone else’s can throw her into an anxious, angry, and aggressive tailspin. She can barely stand it when her sisters have to go to work. In her mind they should be up in their rooms studying. All. The. Time. When her brother is not sitting in his usual place playing games on his computer she goes looking for him. She even tries to control where the cat can and can’t roam!

By now you’ve probably guessed that celebrating holidays is hard Bethany and even harder on the rest of us. If it was just Bethany, my husband, and I, we might resign ourselves to having a quiet holiday at home with the most minimal of changes changes to our routine. But since we have eight other kids and one absolutely adorable grandson to consider, we can’t, nor would we ever even want to exclude them from our holiday festivities just for the sake of avoiding a difficult day. That would be just too darn sad for all of us.

Over the years we’ve tried different coping strategies in our attempt to keep holiday anxiety and meltdowns to a minimum. Without a doubt these are my greatest tried and true, Bethany-approved, special needs happy holiday tips.

Tip #1: Stay home for the holidays. Bethany is most comfortable in her own home so staying home affords us the best chance of having the happiest holiday possible.

Tip #2: Prepare ahead for the big day with a personalized holiday social story. A couple of weeks before the big day write a social story using pictures or words (if your child is a reader) describing what will happen on the holiday. Go over the story with your special someone at least once a day. Be sure to include any changes in routine that may happen and who holiday visitors will be. We want to eliminate as many surprises for our kids as possible.

Tip #3: Plan ahead to eliminate potential meltdowns. Designate an area of the house as a “calm down” spot where your special needs loved one can retreat to in case the celebration proves to be more than they can handle. Be sure to inform holiday visitors ahead of time what area of the house will be off limits and explain why so they won’t be offended.

Tip #4: Declare some items off limits. Does your special child have a favorite toy or other item that he might be anxious about visiting kids getting a hold of? Make this day one time that he or she will not be required to share and let visiting families know ahead of time what items will be off limits. Again, explain why so they understand and hopefully will not be offended.

Tip #5: Decide upon a reward or incentive. Lastly, together with your special needs loved one decide upon a reward of some sort as an incentive to try their very best to successfully tolerate, endure, and dare I say, even enjoy the holidays without having an anxiety attack or major meltdown!

Your Special Needs Tips for a Happy Holiday?

Do these special needs tips for a happy holiday work for you? Or have you discovered others that make your holidays much happier? Share your ideas 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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Author Jolene Philo

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Holiday Stress Relievers for Moms of Kids with Special Needs

Holiday Stress Relievers for Moms of Kids with Special Needs

by | Nov 24, 2014 | Different Dream, Holidays, Special Needs Parenting

Holiday Stress Relievers for Moms of Kids with Special Needs

Kids with special needs aren’t the only people who need holiday stress relievers. Moms of kids with special needs could use a few, too. Guest blogger Liz Matheis offers 3 holiday stress relievers for busy moms and other caregivers, too.

I know you know that the holidays are coming. You know that the holidays are coming. The holidays are great, but…. It throws off everybody’s schedule, including yours, which means higher stress, lower frustration tolerance, less sleep, and an unhappy holiday season. Not good.

This time around, you’re not going to hear about how to make the season manageable for your children. Rather, this time, it’s about you, the parent! So, let me offer a few strategies to help you get through the season, and maybe even enjoy it!

Holiday Stress Reliever #1: Wrap It Up Early

Nobody ever meant for this season to be so hectic and unenjoyable. Unfortunately, we dread the intense shopping and running around so much that we tend to put it off. But, what if you started early?

You can make this season easy by creating a list of who you have to shop for. Next, take a look for these items on-line and/or in store. Then, put it on your agenda to shop for 2-3 items or 1-2 people every 2 weeks starting now. For teachers, encourage class parents to collect money from each student and offer one class present instead of having to buy your child’s teacher a little something that takes you out of your way. The other moms will thank you also.

As you buy it, wrap it, and put it away. By the time it’s time, you will be ready.

Holiday Stress Reliever #2: Stick to Your Routine

You have a routine that you know your child with special needs thrives on. No need to change it just because it’s holiday season. If there are going to be deviations to the schedule, put it on the calendar and let your child know that things will return to business as usual the next day.

If you have holiday parties to attend, hire a babysitter and let your child continue on with the evening’s schedule so you are not trying to anticipate needs, meltdowns, and entertainment for your child. This also gives you the opportunity to enjoy a holiday party, and actually enjoy the season!

Holiday Stress Reliever #3: Work It Out

Trying to balance the holiday season with your job may be another part-time position. If you know that a big deadline or project is coming up, anticipate ahead (just as you did for the shopping list), and start working on your project in small chunks early. Gather the information you need, create a template, work on small parts of it each day so that you are not working late nights or starting super early.

These three strategies will help keep your stress level down which means that your family will not likely feed off of your anxiety and become increasingly anxious as well. Keep it slow and steady. That’s how you’ll make it through the holiday season!

What Are Your Holiday Stress Relievers?

What do you do to avoid, reduce, and relieve stress during the holiday season? Leave your ideas in the comment box…but only if it doesn’t stress you out!

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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Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

Author Jolene Philo

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Happy Thanksgiving, Little Town on the Prairie

Happy Thanksgiving, Little Town on the Prairie

by | Nov 19, 2014 | Different Dream, Holidays, Special Needs Parenting

Happy Thanksgiving, Little Town on the Prairie

 Main Street of my little town on the prairie: Camp Crook, South Dakota in 2007

My husband and I weren’t looking forward to our first Thanksgiving as parents of a baby with special needs. The little town on the prairie where we lived was 750 miles from the University of Nebraska hospital in Omaha where our son had already had 2 surgeries, the first when he was less than 24 hours old. The surgeon insisted on scheduling a follow-up appointment before releasing our son after the second surgery. My husband and I couldn’t afford to miss any more work, so the appointment was set for the day after Thanksgiving. We couldn’t afford to travel by plane because of mounting medical bills.

That meant a 15 hour car trip.
On Thanksgiving.
With a 5-month-old who ate through a feeding tube.
Who was allergic to every form of nourishment except breast milk.
Which I had to pump.
During a 15 hour car trip.
On Thanksgiving.
With a 5-month-old who ate through a feeding tube.

Our first Thanksgiving with our baby boy was shaping up to be the worst holiday ever.

Until some friends said they were planning a benefit for us. These friends were also parents of the students in my classroom, the other teachers in the small school. my husband’s co-workers, and our son’s babysitter. In small towns, everybody wears lots of hats. Mostly cowboy hats in this particular town only 2 miles from the Montana and 20 miles from North Dakota. Mostly dusty hats in the drought-stricken years of the early 1980s when every road coming into the town was gravel. Even the state highway.

We soon learned our friends and co-workers wore fund-raising hats with style.

The remainder of this post can be found at the Not Alone Special Needs Parenting website.

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.

Author Jolene Philo

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