Friday, November 29, 2013

Does a Baby With Brain Damage Have Value?

Though He slay me, yet will I trust Him...
~ Job 13:15, NKJV ~ 

"Parents Ignore Doctor's Advice to Abort Brain Damaged Baby, Delivers Healthy Girl," so the viral headline of this week reads.  Posted in a variety of venues, the story of Liane and Iain Stooke of the UK was revealed 2 years after the birth of their daughter, Miley.  Frenchay Hospital in Bristol had apparently told them after an ultrasound that their baby had holoprosencephaly, a rare disorder in which the front part of the brain fails to divide into two hemispheres, causing severe damage, seizures, and a very limited lifespan.  The hospital had encouraged, and by some accounts even pressured, the Stookes to abort the baby.  Holding onto hope, the couple refused to abort, and gave birth to a daughter who was "completely healthy."  Their daughter did not have holoprosecephaly.

The original story in the UK Daily Mail states, "Mrs Stooke said: ‘Miley's just perfect. I'm just so glad I trusted my mother's instinct and gave my girl the chance to live.’"  While I praise God that these parents chose life for their child, there is also much I find troubling about this story.  Most of my disturbance with this story lays around the question, What if Miley did have holoprosencephaly at birth?  Would the Stookes still be considered wise parents?  Would the story be getting all this coverage?

Much of the unspoken story lays underneath the surface, posing the question, Does a baby with brain damage have value?  The headline seems to imply that one shouldn't abort a baby because you may be killing a "perfectly healthy" child.  That lingering sense that abortion would have been a suitable choice if little Miley had had holoprosencephaly asserts itself behind the headline.
Since giving birth to a child that some, like Peter Singer, would consider "imperfect" or unworthy of life, I have developed a keen spiritual awareness where bioethics are concerned.  My internal "radar" is highly attuned to articles and stories regarding matters of life, especially those involving those with special needs.  I sense that God is calling me to be a voice in the depraved wilderness of today's culture, affirming the value of these individuals.
With that in mind, I would have to shout from the mountain tops, OF COURSE, a baby with brain damage has value!  And that value is ascribed to each and every human being, no matter the physical or mental ability level, by the Creator of that life.  Because God gives each of us immense and immeasurable value (After all, Jesus gave his life for every one of us), we then ought to hold one another in equal esteem.  If Miley Stookes had been born with the holoprosencephaly that was predicted, she would have no less worth in the eyes of her Creator than she does now as a "completely healthy" child.

Secondarily, every person, no matter what their cognitive or physical ability, has incredible value because of how they affect the remainder of the world.  We are transformed and made better people for having been around those with special needs.  Those with disabilities have a way of exposing the typical world's deficits and challenging us to face our own ugliness.

I always laugh at the notion that God only gives special kids to special parents.  In reality, God doesn't call the equipped, He equips the called.  Both my husband and I are far less selfish, more compassionate, more longsuffering for having been the parents of kids with special diagnoses.  Our perspective is greater, with an eternal vision and value for things that money can't buy.  We would live much more on the surface had we not been given the gift of special needs challenges to draw us deeper.

One doesn't need to be the parent or family member of one with a disability, however, to experience the personal transformation that comes from spending time with the uniquely-abled.  Our culture as a whole would suffer greatly if you just removed some of the more famous individuals with a diff-ability.  I think of every adult friend we have with a diagnosis and shudder at the thought of all the wisdom, humor and love we would miss without them.  I also live in awe of the voice being drawn out of the voiceless through things like speaking boards or innovative therapies like Rapid Prompting Method (RPM).  Through these advances, we find that even those we once thought of as "a vegetable" really have a person with independent thinking locked up inside of them.  And even those who have the care worker wiping drool from their mouth as they sit painfully twisted in a power chair make the world around them a better place by their mere existence.  How worthy all of these individuals are of being treated with esteem and respect!

Yes, it is good that the story of Miley Stooke came to the fore, but that is not where the story should end.  No matter what God lays at our feet, "Though He slay me," though He ask us to walk the path of raising a child with special needs, we need to trust in His love for each and every life.  The Lord calls us each to proclaim to an unbelieving, hopeless world, that love and hope He alone gives.  This makes a baby born with brain damage immeasurably valuable, no matter how difficult the journey.

PRAY:  Father, when the rest of the world would so easily dispose of those who are differently-abled, grant me the courage and the voice to proclaim Your truth.  Open the world's eyes to the value of each and every life You create.  May our culture repent of the sins of murdering the least of Your children, and treating them with anything less than Your love and compassion.

For further reading & meditation:  Psalm 139:13-16

~Barb Dittrich
Photo Image Courtesy of: FreeDigitalPhotos.net

Thursday, November 28, 2013

Happy Thanksgiving!

 How we thank God for all of this! It is he who makes us victorious through Jesus Christ our Lord!
~ 1 Corinthians 15:57, TLB ~

Wednesday, November 27, 2013

The Hope in Thanksgiving


Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus. Philippians 4:6-7 (HCSB)

I turn to these verses often because I desperately seek the peace promised there. I struggle with fear and anxiety. God has brought us through every adverse circumstance, but I still struggle with trusting His faithfulness.


The little “with thanksgiving” part tucked in up there is what God uses to get me back on track. The fear and anxiety take over when I’m focused on the circumstances---the bills that need to be paid, the major plumbing project and car repairs that popped up unexpectedly, my concerns for my younger daughter’s health and well-being, the need to be present for my older daughter as she struggles to fill the shoes of sibling to a child with special needs, my marriage’s need for time to grow and thrive. The busyness of a schedule filled with therapy and specialist appointments in addition to activities like church, dance lessons, field trips, and play dates doesn't help.


When I stop to give thanks for the blessings in our lives (and there are many, starting with food to eat, a place to live, and family and friends who love us), I begin to focus on God, who has given us all of these gifts, who has never failed to provide for our needs, who will not fail us now. The anxiety eases its death grip. I am able to breathe.


In looking for each day’s gifts and giving thanks, I am able to anticipate God’s work on our behalf, to hope again. And that’s when the peace comes in---in trusting Him and His great love for us.


Father, help me to remember to turn to you in thanksgiving and praise when the pressures of life threaten to strangle me. Help me remember that your love for us is greater than the love I have for my husband and children and that your faithfulness is something we can count on. Thank you for the good gifts you have blessed us with this year. Amen.


~ Jennifer A. Janes

Tuesday, November 26, 2013

To Whom Much Has Been Given...

"...Much is required from the person to whom much is given; much more is required from the person to whom much more is given."
~ Luke 12:48, GNT ~

"To whom much has been given..."  Isn't that the part where we parents raising children with special needs usually tune out?  We don't feel like we've been given the "much" that others around us have.  We don't have much money, much spare time, much of the average life blessings that our neighbors do like a new car or remodeled kitchen.  The only "much" we feel like we've been given falls in the area of medical bills, troubles with school, parental heartache, and exhaustion.

Yet, as Thanksgiving approaches, I challenge you to pull back for a moment of quiet to contemplate how much you actually have been given raising your child with special needs in America.  Generally speaking, we are blessed to have access to the world's best medical care.  Our children are so fortunate to receive cutting edge therapies and procedures when many, many parts of the world don't even have access to basic medical care.  As I see friends serving as missionaries in foreign lands and adopting children from other nations, I am able to witness first hand the poor equipment, lack of facilities and virtually non-existent access to many lifesaving medications that we take for granted here in the US.

Taking a broader worldview makes it easier to see how much we have to be grateful for, especially when it comes to the care of our child with special needs.  Not only do we have access to medicine, equipment, doctors and facilities.  We also have things like therapy animals, music therapy, assistive apps on iPads, adaptive aquatics, and other complimentary alternative medicine.  We can also take comfort that we raise our children in relative safety in comparison to several parts of the world.  Even in our poverty, we have a roof over our heads, warm clothes and food on the table.

The truth is that we have been given much, even when we don't feel like it.  And there are places where we can pass on the blessing.  If you are the typical family, your child receives extra medical supplies that they don't use.  Our children also outgrow walkers, crutches, wheelchairs and other durable medical equipment.  We can bless others by passing these items on.  We can also make financial donations, no matter how small, to places that do this sort of work worldwide.
  1. IMEC America :: Supplying impoverished nations around the world with repurposed and repaired medical equipment, as well as spare medical supplies, you can feel confident that you are donating to an established, trustworthy organization.  We have even done medical supply drives for them through our church.  It is incredible what you can find yourself passing on.
  2. Joni & Friends Wheels for the World :: Since 1994, Joni & Friends has been delivering wheelchairs along with the Gospel message to third world countries.  They are all about showing the love of Christ in practical ways to the least of God's children.  Several cities around the US have a church liaison, making it easy to collect and pass on equipment.
  3. Save One Life & Project Share :: Founded in 2000 & 2002 by fellow hemo mom and Christian, Laurie Kelley, you can make a difference on several different levels through these organizations.  For those in the bleeding disorders community, Project Share takes donations of clotting factor that is no longer being used.  Through Save One Life, you can sponsor an individual child in a foreign nation on a monthly basis, also corresponding with that child to offer them encouragement.  They are running their "I Saved a Life" Campaign through the holiday season, attempting to reach 1,100 sponsors!  For both organizations, a one-time financial donation can also be made. 
  4. Katy's Kloset ::  Katy's Kloset is just one of many medical equipment lending libraries around the nation.  This one happens to be closest to our Snappin' Ministries Headquarters, but with a little searching, you may find one near you.  The equipment at Katy's Kloset is suitable for both adults and children, and is loaned out completely free of charge.  What they have in inventory depends largely upon what has been given to them, so it changes over time.  But for families just like us, this can be a tremendous lifesaver.
Of course, volunteering locally is an amazing way to give back the tremendous gift of time while not tapping your pocketbook.  We have many wonderful, gracious families without whom Snappin' Ministries could never function.  They write, serve at our Recess respite, coordinate various events, and serve in many other ways.  You can check out our website to see if you might have an area of giftedness that could be a blessing to others through our ministry.

Regardless of how you give, do it LAVISHLY, because God has lavished such incredible love upon each of us.  (See 1 John 3:1)  It may seem like our troubles are great and our blessings are small, but that perspective will suddenly transform when you begin serving or giving to others.

PRAY:  Lord, I give THANKS for the boundless blessings you have lavished upon our family, especially living in this nation.  I praise You for providing my child with great medical care, good schools, and even basic needs.  Thank You for working through people in our area who serve us through churches or public programming.  Holy Spirit, open my eyes to ways that I can give generously in return.  Let me reflect the love of Jesus to a hurting world.
 
Do YOU know other places where families like ours can pass on the blessing?  LET US KNOW, so we can pin them to our
Pinterest Board "Passing On The Blessing"! 

Monday, November 25, 2013

In all things?

“give thanks in all circumstances, for this is God’s will for you in Christ Jesus”  
( 1 Thessalonians 5:18, ESV)
During this month, every time I log onto Facebook, I see all these posts from friends with their lists of what they are thankful for, and all of their wonderful joys this Thanksgiving season as they post their daily “Today I am thankful for…” posts.
Don’t get me wrong I am happy for them. But sometimes when we are having a “special needs moment,” I just want to take a baseball bat to the computer screen.
It’s brutally challenging to give thanks in everything, isn’t it? Does that include the sleepless nights, the never-ending therapies, hospital visits, insurance dealings, meltdowns and outbursts or the constant daily grind?
Everything?
Then throw in the stresses and anxieties the holidays can sometimes bring to special needs families.
Those of you raising a child with special needs know how truly hard this is at times. We all have days when we want to crawl over to the dark side and linger for a while.
I talk to so many parents who have this chronic sadness or sorrow that never seems to go away. It fades into the distance, but it is always still there, hiding in the shadows of their hearts.
I confess that there are days I just don’t feel thankful. There are days I get envious and jealous or frustrated and my attitude quickly changes colors. My poor attitude and lack of gratitude make it tough to find something that brings joy or fosters thankfulness.
But scripture says I am to choose joy. The scripture says it is God’s will for me to remain joyful. So in order to do that, I have to change my perspective.
I have to make a choice.
I have to take the same circumstances, the same situation, the same issues and look at them differently in order to choose thankfulness. It’s my choice. It’s not about changing my lot in life or my circumstances. It’s about how I respond to my lot or circumstance. I can’t control the circumstances, only the way I respond to them.
So as a dad of a son who is autistic, non-verbal, afflicted by cerebral palsy, non-mobile, and cognitively challenged- what do I have to be thankful about this season?
I am thankful for a son who has been protected from the impurities and imperfections of this world.
I am thankful for a son who I will get to be around every day for the rest of our lives.
I am thankful for a son who even at 16 years old still hugs my neck.
I am thankful for a son who taught me about true unconditional love.
I am thankful for a son who has taught me the essence of grace--a Father doing for his son what the son can’t do for himself.
I am thankful for a son who has taught me complete and utter dependency on God for my every need.
I am thankful for a son who has taught me to find joy in the simple things and contentment with just a few things.
I am thankful for a son that God has used to help me find my purpose in life.
I am thankful for a son who seems to bring out the best in everyone he encounters.
I am thankful for a son that I love simply because he is my son, not because of anything he has ever done or will ever do.
I am thankful for a son whose name is written in the Book of Life with a permanent marker.
I am thankful that God has given my son a plan, purpose, and destiny for his life before he was ever born.
Yes, it would be easy to come up with a list of things I’m not thankful for. In fact, it would be real easy. After all, it’s my choice.
And it’s yours as well.
Choose joy. Choose thankfulness. Count it all joy my friends.

We were chosen. We are called. God’s strength is perfected through our weakness. Give thanks my friends.

PRAY: "Father you say that all things work together for good for those who love you and are called according to your purpose. Thank you for calling us, thank you for loving us, thank you for giving us a purpose."


Friday, November 22, 2013

Creating My Own Gethsemane

Then Jesus went with them to a garden called Gethsemane and told his disciples, “Stay here while I go over there and pray.” Taking along Peter and the two sons of Zebedee, he plunged into an agonizing sorrow. Then he said, “This sorrow is crushing my life out. 
Stay here and keep vigil with me.”
~ Matthew 26:36-38, MSG ~

A few weeks back I was doing some cleaning around my house and came across an old 3 ring binder I had with dated journal entries.  Right at the front of the binder was the collage above that I had created out of magazine photos nearly 23 years ago.  It was a sales training exercise where you created visual images of the goals for which you were aiming.  The smart leaders back then were training people that if you were shooting for nothing specific, that is exactly what you would achieve.

My priorities and dreams were so much different back then.  I didn't know and walk with Jesus the way I do today.  The lure of country club living was great.  I had recently ended a marriage to someone whose family was extremely affluent with "old money".  In the brief years of that union, I was exposed to many of life's finer things.  I built a career in the investment industry and worked with millions of dollars every day.  My heart was chasing after all the things to which I had been exposed.  

You might be interested to learn that I achieved and acquired everything in that collage.  While I never owned a convertible, I did buy my only brand new, beautiful, decked-out car.  I stayed at the Landmark and other fine resorts.  I purchased the expensive perfumes.  I went on the cruise honeymooning after my second marriage.  I still have the fur coat and the Spode Christmas Tree China that may get used twice per year, if at all.  And after several miscarriages, I was mightily blessed in my second marriage with 3 beautiful children.

Yet, all of those things became a Gethsemane that I had created for myself.  My misplaced goals and the great sin behind them became the weight that crushed me.  Craving after everything but the One who deserved my full attention proved to be nothing but folly or heartache.

Most of us recall the story of Jesus going to the Garden of Gethsemane to pray the night before his death.  Few of us, however, know that the word "Gethsemane" means "oil press".  Years ago, through the amazing teaching of Ray Vander Laan, I learned that this heavy stone, used for extruding olive oil in biblical times, could only be afforded by the wealthy or influential because of its great cost.  (See The Crushing Weight of the Gethsemane)  A high rental price was paid to be able to use that tool by those who grew olives.  A town's economy rose and fell on this process because olive oil had such essential and versatile use in that culture.

I had to be crushed and lose it all to gain it all.

Looking backwards, I see how the Gethsemane I had created in my own life cost me dearly.  My eyes and heart were chasing after so many temporal things.  I was always worried, hoping that reaching that one last goal would be the key to my happiness.  It never was.  And what happens when you lose it all?  There is a tremendous cost when your husband finds himself between jobs 6 times in 16 years like mine has.  It is a heavy burden indeed when you can barely afford a 4 day weekend vacation camping in a tent because all that is temporal has slipped through your fingers.  Getting away to relax for a brief sanity break becomes a distant memory.  Instead, you find yourself grateful for what little you have.

The maladies besetting the precious children I have born certainly weren't a part of the goal either.  Increasingly finding ourselves at specialists with each child for varying reasons over the past 16 years has often been a crushing weight.  I had my expectations of how I was going to raise my children, and that path surely has been redirected by road blocks such as hemophilia, anxiety, PTSD, severe ADHD, severe allergies, asthma, social deficits, sensory processing disorder, and an unknown autoimmune disease.  Even their spiritual struggles haven't been what I anticipated they would be.  They have all had to face too much, too soon in life.

The good news to this story, as I look back, is realizing that the day I welcomed Jesus into my life as the CEO, the intractable burden of my misguided desires and stubborn sin were lifted off my own shoulders.  He made me the winner of life's lottery simply by carrying the weight of those things for me.  I smile, shaking my head at the outdated pictures composing my collage of former goals.  How often I have wished I could sell the fur and the china to help pay off some bills, if only they were actually worth something.  I am so relieved and gladdened that my joy is in something far greater now, Someone with eternal hope.  It's hard to believe sometimes how far God has brought me in changing my perspective.  In this way, special needs and all of our other family challenges have transformed my Gethsemane into a gift.  

I am humbled.

When I read The Message translation of Matthew 26:36-38 and read Jesus' words, “This sorrow is crushing my life out," it can't help but humble me.  I mean really, is anything in that collage I made, with the exception perhaps of a child, worth dying for?  Yet, my personal drive, false "gods", and all of the sinful attitudes and behavior that came along with them are exactly what Jesus willingly took on.  He allowed the life to be crushed out of him by my wickedness, so that I could spend eternity with him in paradise.  Such a crazy love can't be captured by any goal-setting image pasting that I could ever create!  I am breathlessly humbled that He treasures me with such boundless grace and mercy.

Stumbling upon a memory like this, one that reminds me of my deliverance from my own, created Gethsemane, is a blessing I would like to encounter more often.  Sometimes, we need to reflect on the past, and how far God's brought us to fully appreciate the bright future He has guaranteed us in the days ahead. 

PRAY:  Awesome Savior, thanksgiving begins with humility.  Thank You for helping me come to the end of myself, no matter what it takes.  Continue to give me right priorities and a focus that remains squarely on You.  Thank you, Jesus, for suffering so much pain, so that I might live. 

~ Barb Dittrich

Thursday, November 21, 2013

'TIS THE SEASON FOR DYSFUNCTION: Family and Friends Edition

 The words of the reckless pierce like swords,
    but the tongue of the wise brings healing.
~ Proverbs 12:18, NIV ~

Do not answer a fool according to his folly,
    or you yourself will be just like him.
~ Proverbs 26:4, NIV ~ 

"They don't know what they don't know."  This wise phrase uttered 20 years ago by one of my dear friends, a colleague in the investment industry, has stayed with me through many situations over the years.  Intended to be his means of coping with others in our field who made rules without expertise,  I have adopted this pithy comment for use with the endless parade of critics who judge our life with special needs.  And you may want to grab hold of it too, especially as the holidays approach. 

No other time of year do comments by others have the cataclysmic effect on our families like they do during the holidays.  Attitudes by family and close friends can create a tension that makes parents of children with special needs positively dread this time of year.

Why?

Why do these statements get so under our skin?  Let me count the reasons:
  • Parents are already vulnerable due to the demands of the season.  Managing the stress that comes to parents raising a child with a diagnosis, while also dealing with the added, usual pressures of the holidays (See our post on couples) can leave little emotional capital for dealing with hurtful comments or actions inflicted by others.  Whereas we might otherwise let inconsiderate behavior slide off of us other times of the year, we can be a time bomb just waiting to be set off around Thanksgiving, Christmas, and New Year.
  • As Proverbs 12:18 states, reckless words hurt.  People can and do make comments without thought at holiday gatherings.  Add some alcohol to the mix, and it gets even worse.  Sadly, for lack of anything intelligent to say, people at parties will say some of the most shallow, ignorant things known to come out of a human mouth.
  • We are in close quarters with people we may not like very well.  Virtually everyone has someone in their family whose company they could live without.  Whether it be an in-law, estranged former friend, or abrasive aunt, people like this can be hard to avoid when we are all crammed into one building for a celebration.
  • Holidays put us together with others who do not walk the same path we do.  While it can present an opportunity to educate others on special needs, it can also expose the apathy and ignorance of others.  Much can hinge on which type of people you encounter.
  • This season is filled with expectations.  Many of those expectations hinge upon those who are supposed to be near and dear to us.  All of us want love and acceptance from our family and circle of friends.  Mistreatment of our child equals mistreatment of us.  And who doesn't want to be judged a good parent by their loved ones?
  • We are incredibly selfish humans.  Just as God reminds us in Romans 3:23, our holiday parties are filled with a collection of perfectly imperfect people.  This means that while parents may be worried about wanting a lovely holiday experience for their child, the hostess may be worried that a special needs child in attendance is going to ruin their party.  We each operate from our own frame of reference thinking that we should be entitled to the kind of experience we would like to have.  Needless to say, those views are far from the meaning of any holidays in November and December.

 What to do

  • Do not skip psychotropic medications or visits to mental health professionals this time of year.  If you are seeing a counselor, you will definitely need their support more than ever during this season.  Psychiatrist, psychologists, and psychotherapists are uniquely equipped to offer you emotional strength when you are weakened by the challenges of the holidays.  They can offer you the opportunity to rehearse what you will say to those who come at you with reckless words.  They can also act as a competent sounding board, offering solid perspective regarding interpersonal relationships.
  • Get adequate sleep, exercise and meals.  Just like your children, you will feel out of sorts when you are physically depleted.  The mental acuity needed to deal with the unkind comments or behavior of others will not be at an optimal level if your physical needs are not met.
  • Set boundaries.  Decide with your spouse what your threshold is for unkind words and mistreatment by others.  In other words, there are comments or behaviors that you may be able to just let slide off of you, others you might feel compelled to address, and yet others you may sense are worth leaving the gathering over.  While we can't always anticipate the behavior of others, it is critical to make sure that you and your spouse have a mutual understanding and respect for your family's "hill to die on" where the treatment of your child's special needs are concerned.
  • Just as Proverbs 26:4 states, do not lose your cool with foolish, ignorant remarks or behavior, lest you look equally as foolish and ignorant.  A great article written by Jon Acuff wisely encourages us to view the hurtful remarks of others as starting with these 10 words, "I'm a complete stranger with some advice about your life."  Most of us do not spend day in and day out with our extended family or friends.  For all intents and purposes, they are largely strangers to our daily lives.  Therefore, they believe they are making intelligent, insightful remarks about something they only know about in a very remote way.  Little do they know how foolish they are.  I still have in-laws on both my side and my husband's side of the family who make extremely rude value judgments on our children and our parenting.  "They don't know what they don't know."  We limit our time with them and not only frame their words in the context what Acuff suggests, but also smilingly reply, "Thanks for the input," which politely shuts the conversation down before it goes any further.
  • Realize that the time to address offensive talk or actions from others is usually not at that party or dinner.  Unless it is harmful or your "hill to die on", you will likely have better results if you act in a discreet manner and contact the person after the holiday.  A calm, clear explanation of what the offense is and what your boundaries are, apart from the celebration, shows courtesy to the host or hostess while still addressing the difficulty.  Using "I" statements like "I feel...  when..." is less accusatory than saying, "You said...  You did..." 
  • Pray.  Not only pray for those you will encounter at these gatherings but pray for your own immediate family.  Pray for wisdom, calm, kindness and clarity in your own behavior.  Ask that God would help you to love others the way He does.  Pray that the Holy Spirit would open hearts and minds to your child's value as a person.  Forgive and continue to ask for a forgiving spirit going into the holidays.  And petition God for unity amongst all who are at your holiday celebrations.  Make sure that your heart is right with the Lord, and trust Him with the rest.
Above all else, remember why we even have almost a month of non-stop celebrating.  We are grateful for the boundless blessings Yahweh lavishly pours on us every day of our lives.  It is important to come together, uniting in praise of God for those blessings.  We remember, above all, our greatest blessing -- the saving grace of Jesus, who came to pay the price for our sins and make a way for us to reunite with Holy God.  What incredible reasons to celebrate as we usher out one year and welcome in another!  The more we keep our eyes fixed on those reasons, the more dysfunction of every sort will diminish.

PRAY:  Lord, it is way too easy to have the meaning of this season swept away by the behavior of others.  Holy Spirit fill me with the strength to keep my eyes focused on You and not my circumstances.  Grant me wisdom in setting boundaries with others.  Make me the best parent possible to my child, while reflecting Your love to everyone whom we encounter.

~ Barb Dittrich

Photo Image Courtesy of 123RF

Wednesday, November 20, 2013

'TIS THE SEASON FOR DYSFUNTION: The Kid Edition

A prudent man foresees the difficulties ahead and prepares for them; the simpleton goes blindly on and suffers the consequences.
~ Proverbs 22:3, TLB ~

It was 3 AM that year.  Unable to sleep from sheer excitement, our young son felt obligated to wake the family to tell them that a certain obese individual, known to wear red and travel by sleigh, had been at our home in the few hours previous to this rude awakening.  We tried to settle him back down to sleep, but by 5 AM, his older sister had joined him too.  It was full blown chaos.

Another year, our celebration with friends ended early as our toddler puked on the floor right next to our Christmas tree.  She was having yet another allergic reaction to a new class of antibiotics, which sent us once again to the emergency room.


Then there was the year where one of our kids had a complete anxiety meltdown, storming away from the table, refusing to eat any of the Thanksgiving dinner.  Even the long-awaited, whipped-cream-adorned pumpkin pie would not deescalate this episode, which no one understood.


These are just a few of the joys of parenting children with special needs during the holiday season.  While we fantasize about it being a magical time, creating sweet memories for kids, there can be a whole cocktail of complications that plays into the big picture of the holidays.  Our kids often experience some of the same unbridled joy of other children (as in the 3 AM story), while having their diagnosis factor in at the same time.


Just like the predictable conflicts in our marriages this time of year, our children can and do face challenges in November and December that we can anticipate.  Seeing those difficulties ahead, God tells us we are wise to prepare for them.  If you have not already begun preparing for the holidays, now is the time to start.  

 

Make Dietary Preparations

Food is a huge issue on so many different levels.  Here are some top tips:
  • Make your hostess aware of any allergies at least a week prior to any holiday gathering, to afford them ample time if they would like to make adjustments to the menu or even have certain items out of the way (such as peanuts for the severely allergic).  You can also make certain the hostess understands if you have to bring special dietary items, such as gluten-free foods, to assemble an individual plate for your child.
  • Have your child sample some of the foods associated with a holiday that might challenge them.  Food textures can be a contentious trigger for those with sensory issues.  Desensitizing ahead of time can offer some relief and lessen anxiety.
  • Institute the "no thank you bite" rule where your child learns the courtesy of taking a small sample of a food they dislike on their plate.  If this is too much to overcome, try to teach your child to at least say "no thank you", if they are verbally capable.

Make Activity Preparations

The expectations many adults have for children never ceases to amaze me.  Since kids will be kids, make the holidays special for them by preparing in advance cognitively and physically appropriate activities that they can enjoy for the entire holiday experience:
  • Walk yourself through the entire holiday, including travel to your destination.  (We have many good articles on traveling with children who have special needs on our Pinterest board.)  Soothing items, ear plugs for the sound-sensitive, fidgets for the sensory or energetic child, and a favorite quiet time toy or activity are a must for the holidays.  We have been known to pack our own sensory bag that I discreetly tuck in my purse.
  • Speak with your hostess ahead of time, and be prepared to speak with your fellow guests about your child's use of an iPad or tablet device at your gathering.  People who don't live the same lifestyle and circumstances we do likely have no knowledge of how this tool is used for kids with challenges.  A simple preemptive explanation can prevent the impression that your child is rude or addicted to electronics.
  • This time of year is perfect for teaching your child applicable life skills.  Because kids are eager to be a part of all involved with the holiday preparations, start now with age appropriate tasks like table setting, dish washing, simple food preparation, and even gift wrapping.  If you are hosting the gathering, let your child's new skills shine in front of guests.  If the party is away, teach your child the etiquette of asking if they can help the hostess.

Be Vigilant About Rhythms

  • The value of sleep cannot be overstated.  Despite some late nights, jealously guard your family schedule by getting your child to sleep as close as you can to their regular time.  When sleeping out of town, follow the same bedtime rituals such as book reading, bringing along the child's pillow, using their own weighted blanket or favorite snuggle.
  • Parents need to also be mindful of regular mealtimes for their children.  While we can find ourselves distracted by all of the activity, our kids thrive on structure.  When their blood sugar gets out of whack, so does behavior.  Setting an alarm on a cell phone can make for a much happier outcome for the entire family.
  • Maintain a rhythm of switching off child responsibilities with your spouse.  If you were in charge of making sure the kids were fed at his family gathering, perhaps your spouse can take charge of it at your family gathering, and so forth.  This will keep your child grounded in the care of their own parent while also keeping each of you from feeling overloaded.

Have an Alternate "Plan B"

Raising children with special needs is a lesson in expecting the unexpected.  Medical crises know no holidays.  The wise parent will make certain that they have "prepared for the worst and hope for the best."
  • If you are traveling out of town, make certain you know where the nearest competent medical facility is located.  You may have your child's specialist identify and/or communicate with treatment centers near your destination.  This gives you a layer of protection if your child winds up inpatient while you are visiting away from home.
  • Do not fly without checking in on the TSA web page for "Travelers with Disabilities and Medical Conditions".  Following their prescribed guidelines and rules will make travel much smoother.  Additionally, a travel letter from your child's specialist will help with smooth passage, not only through the TSA checkpoint, but also with medical staff at your destination, should you need them.
  • Have your guests phone numbers saved in your cell phone if you are hosting the celebration.  This way, if you need to contact your guests on the chance that your child's health issues flare up, you will not have the added stress of tracking down their contact information during an emergency.
  • Talk to family about how everyone would like to treat the Thanksgiving meal or Christmas gift opening if you are hosting, but have to head to the hospital.  Creating a plan as a family team helps diffuse some of your stress along with creating some wider family understanding for what you live with every day.
  • Don't be afraid to exit a gathering early if you see that your child is nearing overload.  Making your immediate family a priority is always more important than pleasing relatives and friends.
  • Don't be afraid to bring the holiday to the hospital.  Small scale methods of making the holiday special for your child, such as favorite music or DVDs, small gifts or decorations can help if they have to be inpatient.  Child life specialists at medical facilities are just a start of the excellent resources available to your child to help with the difficulty of inpatient and outpatient care in any season.
  • Be prepared if boundaries must be set with exposure to germs.  While the holidays typically mean family, work through talks with the support of your spouse (See yesterday's post.), and develop your speech if you have to assert yourself for the well-being of your child.  Smaller gatherings staggered throughout the holidays or having to completely opt-out one year are not the end of the world.


Get Control on the Influx of Toys

Toys and gifts can be such an area of challenge for families facing special needs.  Relatives or friends can end up either giving gifts that are not suited to our child's ability level, or they avoid giving a gift because they are unsure of our child's ability level.  Spelling things out clearly for others can offer the best outcome.
  • Once again, I recommend that you check on our Pinterest boards for "Kid Stuff", "Products I Love", "Sensory Issues", or "Technology for Special Needs" to get some wonderful gift ideas for children with various challenges.
  • Places like Toys-R-Us offer you the ability to create a Wish List Registry for your child.  You can do the same through Amazon.com.  The nice part of creating such a list is that you can have photographs of the desired items available to those wishing to get your child that much-wanted gift.
  • Two key points to remember in toy-buying for children over the holidays, 1) DO NOT overbuy for a child.  Because people sometimes want to overcompensate for a child's special needs, they overdo it in the toy department.  This can create the opposite effect making your child either overwhelmed or overstimulated; 2) Durability matters.  Whether it is gross motor difficulties or executive functioning challenges, our kids are naturally harder on toys.  Always go for the best durability your money can buy when purchasing toys.

Remember that no one knows your child better than you do.  Go forward into the holidays with the unique wisdom God has equipped you with as their parent.  But exercise that wisdom by planning now, before the holidays.  Once you find yourself in the thick of it, you have lost a great deal of control to shape a positive outcome.

PRAY:  Father, You have entrusted me with such responsibility as a parent.  Keep me calm and clearheaded as I prepare for my child's needs over the holidays.  Increase my self-confidence in the decisions I make on behalf of my child.  Send me the support I need and make our family unified during this special time of the year.

~Barb Dittrich
Photo Image Courtesy of: FreeDigitalPhotos.net