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Patience Is A Conquering Virtue

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Can you imagine what it would be like to be nonverbal?  I mean, completely non-verbal?  Not one word.  Ever.

That’s the life of Hope and Charlie.

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The way they communicate is the way I would communicate if I was non-verbal.  Through behavior, they show me how they feel and what they want or need.

Big hugs mixed with giggles means they’re happy.

Pulling me to the pantry or the fridge means they’re hungry.

Peering out of a window means they want to go outside.

Sounds simple enough, right?

At times, though, being non-verbal is so much more complicated.  A bit tricky even.  Because sometimes Hope and Charlie want to tell me they’re feeling frustrated, sad, or angry.  Other times they want me to know they had a bad dream or that they feel bored or that they have a tummy ache or that they miss their big brother so much it hurts.  During those times, they might throw things, pull my hair, melt down into a heap of wild and wooliness on the floor….or else find a corner to hide in with head down as if wishing to give up and disappear.

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I wish on every single star every single night that they could be given the gift of speech.

But at this point, those stars are not the wishing kind.

So we keep waiting, sojourning together, working with sign language, picture cards, and iPad apps….hoping to make communication easier.  Not giving in.  Not giving up.

I try to put myself in their shoes.

Would I want to try different foods?  Explore different places?  Meet new people?

If I would, they would.  Even though they can’t tell me.

So we mix it up.  We try new things.  Sometimes we score big…other times it’s a total bust.  But we try.  Together.

We’re partners in the truest sense of the word.

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Oh, you may say, that requires so much patience.  Indeed it does, but not on my part.  I have it easy.  I have the voice.

It’s the Hope and Charlie’s of the world who can teach us all about what it means to be patient and to endure.   Stop for a minute and think about all the things we get impatient about day after day.  A restaurant forgot a portion of our to-go order.  The traffic light took too long to turn green.  The lines were too long at the grocery store.  Our order from Amazon didn’t get delivered quick enough.  The pastor preached beyond his time limit.  A friend didn’t return a text until the next day.

We complain.  We grumble.  Then we post about it on social media.

And even worse.

We feel entitled.

To an easier lifestyle.  To fast service.  To perfection.

UGH.  Isn’t it supposed to be the millennials who have the entitlement issues?  haha.

I didn’t realize I had this mentality until Hope and Charlie came into my life, turning the world completely upside down.  Or right side up.  Yes, definitely right side up.  They blasted into my space with their extra chromosome and shook things up big time.  Changing my priorities.  Showing me the difference between what’s important and what’s a throw-away.  I don’t have it exactly right yet, but they are certainly teaching me.

How long will it take mom to find the splinter in my finger?

When will it dawn on her that I need her to lie down with me for a little while at night before I go to sleep because I’m afraid of the dark?

How can I let her know she’s tying my shoes so tight I can’t feel my toes?  that bananas make me gag?  that I’m scared of bumble bees?  that I can’t manage steps too well?  that I fell off of the swing today?  that I lost my tooth two days ago?  that someone stared at me and made me feel bad?  that I can’t find my favorite toy?  that I nearly choked on a piece of candy?

Until she figures it all out, I’ll manage.  Making the most out of life.  Wearing a smile.  Giving hugs.  Being happy with all I’ve been given.

Can you imagine what it would be like to be nonverbal?

Can you imagine what it would be like if we were all so patient?

Just my rambling thoughts.

~Mel

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When The Heart Of America Stops Beating

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There was a time in America’s history when individuals who had special needs were locked away from society, imprisoned in institutions.  And during that time, those defenseless individuals were experimented upon, subjected to routine abuse, and neglected.  Read here and here and here … just to link a few articles that elaborate on the subject.

Reliant upon a wheelchair, and unable to utilize her arms and legs due to a rare form of arthritis, my grandmother was significantly disabled.  I vividly recall a time when there were no handicapped restrooms, parking spaces, or ramps … when we’d have to spend time locating a door wide enough for her wheelchair to fit through.  Her hands were so gnarled with the disease.  People would stare and treat her as if she didn’t belong.  My grandmother went home to be with Jesus, receiving complete healing, before the laws changed thanks to the Americans with Disabilities Act (ADA) … and before attitudes changed.

As a country, we’ve experienced twenty-seven glorious years of acceptance, tolerance, and inclusion … where as a nation, we’ve genuinely worked to live up to the greatest document ever written by humans where “All men are created equal…endowed by their Creator with certain unalienable rights, that among them are life, liberty, and the pursuit of happiness.”  Have we been one-hundred percent successful?  Of course not.  We’ve failed from time to time, but as a whole, over the last three decades, we’ve chosen to look at all life, regardless of ability or disability, race, or sexual orientation as valuable and worthy.

Special Olympics is a tremendous force of positivity that has reached out and touched nearly every individual on the planet at some point in time.  We’ve rooted for those amazing athletes to overcome obstacles.  We’ve cheered for them as they’ve exceeded even their own expectations.  And we’ve learned from them, haven’t we?  How incredible is it to watch one special needs competitor reach out to encourage another?  Do they want to win?  Absolutely!  But not at the expense of their friends.  That’s the way it is in the world of those who are special.  They bring a breath of purity and goodness that we all need.

Best Buddies, birthed from the same family who gave us the Special Olympics, is another powerhouse organization determined to break down the wall that divides the typicals from the specials by initiating friendships between the two worlds.  If you meet anyone who has ever been involved in the Best Buddies organization, you’ll find that the typical peers receive as much (or more) of a blessing than the individuals who have intellectual challenges.  Their focus is to end the social, physical, and economic isolation of the 200 million people who have intellectual and developmental disabilities and they are doing it…one relationship at a time.

I was once the young girl who loved her grandmother more than words can express.  I never saw her disability, because to me she was perfect.  Now, fast forward the reel by three decades, and I’m ironically called “Mom” by two special needs kiddos.  And to me, they, too, are perfect.

Thankfully, the world my children have lived in has been much more accommodating than the world my grandma lived in.  Schools offer inclusion, I can always find a parking space near the front door of any grocery store, and people are generally kind to Hope and Charlie.  But it is becoming overwhelmingly evident that this generation may be sliding into retreat mode.  These headlines should scare the heck out of us:

Seattle-area high school football players charged with attempted rape of special needs student.      

White Football Player Accused Of Coat Hanger Assault On Black Teen With Disabilities Will Avoid Prison.

Student at Silverado High School Arrested For Assault of Special Needs Student

STUDENT ARRESTED FOR ASSAULT OF SPECIAL NEEDS STUDENT IN SANTA CLARITA

JCPS, LMPD investigating sexual assault on special-needs school bus

Trial set for Springboro teen accused of special-needs student assault

Shocking Videos Show Teacher Abusing Special Needs Student at Greenville High School in Mississippi

Teacher’s awful mistreatment of special needs child

Special education teacher charged with abuse gets immunity

Police Officer Who Killed Ethan Saylor, Unarmed Man With Down Syndrome, Won’t Be Indicted

And now, today, we hear reports about the torture of an eighteen year old man who has special needs in Chicago :

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Four perpetrators, one who reportedly went to high school with the boy, not only tortured him relentlessly, but posted video feeds of the abuse on Facebook for the world to see.   Binding him, they beat him and taunted him relentlessly with racial slurs and verbal attacks against Donald Trump.  They also forced the defenseless young man to drink water from a toilet…cut his clothing with a knife…and partially scalped him.  The cruelty was put on display for the world to see.

In response, one would expect the Chicago Police to be sharp, unwavering, and stern.  But no.  In the first public statement, Cmdr. Kevin Duffin said:

“Although they are adults, they’re 18. Kids make stupid decisions — I shouldn’t call them kids; they’re legally adults, but they’re young adults, and they make stupid decisions,” Duffin said.  “That certainly will be part of whether or not … we seek a hate crime, to determine whether or not this is sincere or just stupid ranting and raving.”

  

What is going so terribly wrong with our society?

When did it become our first instinct to try to find an excuse for this type of abhorrent behavior?

In Psychology 101, we learn how it’s human nature to feel protective over babies, puppies, and kittens…that something innate kicks in, even in children,  inducing the strong to care for the weak.

Could the same case not be made for those who are disabled?

That as a society, it should be an innate quality that we feel the need to care for individuals who are defenseless or who are mentally and/or physically challenged?

However, when the trait that causes those who are strong to look after and to care for those who are weak is missing, as has been studied in the cases of children who abuse animals, psychologists warn this is a red flag.  (link here ; and here )

What would cause one who is physically and mentally superior to attack someone or something weaker?

Even in the case of children?

The answer, if not a diagnosed mental imbalance, is violence and/or abuse.  Studies show abusers have either been abused or have been witness to abuse and/or violence.  As it turns out, abuse begets abuse…and violence begets violence.

No one would disagree that we live in a day and time when violence permeates tv, movies, music, video games, and the news.  We’ve allowed it.  Supported it.  Turned a blind eye to it.  And now we are reaping what we’ve sown.  Just recently I heard about a new reality tv show coming to Russia.  It is modeled after the “Hunger Games” and will be available to stream live 24 hours a day at the touch of a finger:  Russian TV is literally making a ‘Hunger Games’-style show that will ‘allow’ rape and murder .

It’s time for change.

We must firmly stand together against violence, promoting love above all else.

We must defend the weakest among us as a standard.

And we must uphold our creed that all people are created equal.

The heart of America is at stake.  

Love wins.

Empathy wins.

Inclusion wins.

Abuse begets abuse.

Violence begets violence.

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Just my thoughts.

~Melanie

3 Ways To Succeed As A Special Needs Parent

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To survive is one thing.  To thrive is another.  Being a special needs parent is not a blip of time that quickly ebbs and flows without much of a hitch.  Far from it.  It’s a lifelong role that will wear you out, twist you up, and throw you down … there are so many hitches!!!  

The good news is you have options.  Here are three simple strategies we can all utilize to succeed as special needs parents right now:

FIRST:  This is your life, so make the choice to love who you are and what you do.  Try this.  Right now, wherever you are, close your eyes for just a couple of seconds to envision your special needs child.  How do you see her in your mind’s eye?  Carefully take in her face and all that makes her unique.  Is she smiling?  Does the sound of her cute giggle melt you?  Can you feel her fingers entwined with yours?  I’m guessing those images make you feel joyful.  This is no trick … it’s a scientific fact.  When we stop and meditate on people we love, our bodies release serotonin.  It’s an instant mood booster.  So whenever your journey seems more than you bargained for, when you’re feeling worn out and pushed beyond your limits, go back to this place.  Hesitate and meditate.  A dose of happiness is always within our reach and is as simple as a choice we can make.

SECOND:  Recognize the difference between a calling and an assignment.  If you are a special needs parent, hear me say this:  You have been called!  It doesn’t matter whether you were given this child through birth or through the gift of adoption, you have been chosen.  When people say to you:  “God only gives special kids to special people”, it’s the truth. Embrace it. Believe it.  Accepting a calling is much more effective than merely tolerating it.   And through acceptance, psychologists guarantee you will find empowerment.  But how?  It’s actually very simple.  Practice by saying it. Speak it out loud with words:  “This is my calling in life and I can do it!”  When our brains hear us speak with authority, our bodies comply by believing it.  The same is true when we speak negatively out loud, so don’t!

THIRD:  Be real.  While you can choose joy and accept the fact that this special needs journey is a calling, you must still give yourself permission to be real.  Every single day, your child is completely dependent upon you … and this may never change.  Perhaps she’ll never move out on her own, drive a car, marry, or juggle her own medical appointments.  The monumental nature of your responsibility sometimes feels overwhelming and the “what if” moments hit you like a mack truck hurling from the sky.  In those times, it’s necessary to be real.  Cry if you need to….hire a babysitter, go out for coffee, schedule a vacation, talk to a counselor, write your thoughts in a journal, confide in a friend, join a church, or take yoga.  Do whatever is right for you, but do something.  Denial can produce depression, anxiety, mood disorders, and a host of other health issues.  So be real.  Be you.  And remember, no one expects you to be perfect.

Don’t we all have the same goal?  Being the best we can be for ourselves and for those who’ve been entrusted to us?  By implementing these three simple strategies, we can take on this challenge and find success.  We are in this for the long haul.  We are in this together.  And our kiddos are worth it!

Just my thoughts!

~Melanie

When Being A Special Needs Mom Is More Than You Bargained For

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Charlie entered my life through the gift of adoption just over eight years ago.  He has an extra chromosome, is on the Autism spectrum, remains non-verbal, and has sensory processing issues that often send him caving in the nearest corner.  The baby of our family, he is also my sweetest cuddle bug and has me absolutely wrapped around every single one of his fingers.  For me, Charlie is perfect; in fact, my life is complete because of this little Cheese Puff:

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It’s not an easy journey, however.  Selfless love is never easy.  I’m Charlie’s caretaker twenty four hours a day for seven days each week where I serve as his head chef, his clean up crew, his security detail, and his best buddy.  Most of the time I succeed.  When I walk into any room, I break down each and every nitty gritty twist, angle, and point of view to locate all potential threats or hazards within seconds.  Charlie can’t grasp danger, so that’s my job.  Most of the time I succeed, but sometimes I fail.  And in those times when I fail, my buddy doesn’t have a voice that allows him to summon me for help.  Today was one of those days.

Can you see that ring around his right ankle?  At some point during the night, Charlie managed to get a cord from a toy tightly wound around his ankle.  Thank God it didn’t cut off all circulation.  It was so tight, however, his foot turned blue.  He can’t tell me how long he stood still beside his bed waiting on me to rescue him.  It could’ve been hours.  He can’t tell me how badly he was frightened or how much it hurt.  All he could do was just stand there beside his bed waiting for me.  And waiting.  And waiting.  Trust me, this is more than any special needs mom ever bargains for.

As the momma of two kiddos who have special needs, my guard is always up and I am always on.  That’s not a prideful statement, but a necessary fact.  I’d rather let down the rest of the world than to disappoint them.  I must’ve said I’m sorry one-hundred times or more as he collapsed into my arms.   And you know what?  My love for him was enough.  Because love conquers all fear, pain, disability, hurt, and trauma.  Cuddled into my arms, the thought of being upset or angry with me never entered Charlie’s mind.  Love fixed it all.

I correlate so much of being a special needs momma to our incredible Father who loves us so selflessly that He took all of our sin and imperfections and died for us, redeeming it all.  We take pride in how intelligent, successful, or physically attractive we are…but the Savior sees us as a bunch of special needs kids.   Just like Charlie, sometimes we get into an awful predicament.  And perhaps we’re so trampled by life, stifled by our circumstances, or so broken that we can’t find our voices to call to Him for help.  So we wait.  And wait.  And wait for Him to come.  Know this, friends…not only is He always coming for us, He is always there.  We don’t even have to call.  And no matter our situation, He loves us beyond measure.  Yes, love conquers all.  It fixes everything if we allow it to.

This is what Charlie has looked like ever since being freed:

Tuckered out after a trauma-filled night, the little man won’t leave my side.  Even in a zombie-like state of sleep, when I move, he moves.  So I just sit here beside him, listening to him saw his logs, allowing him to feel safe.   I am his security detail, after all.   It’s part of the job.

In the same way, if you’re going through a particularly difficult time, know that God is right beside you, wanting you to feel safe in HIS arms.  He is your security detail, after all.  It’s part of the job.  Let Him be your comforter today.

Just my thoughts…

~Mel

Five Tips To Take On The Holidays With Special Needs Kiddos

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The holidays are here.  Those four words make me break out in hives every single year.  As a special needs momma, I’m giving my best effort to parent two kiddos who have Down syndrome, who are non-verbal, and who have sensory processing issues.  When the holidays come around with bright blinking lights, merry music, frigid temps, Santa, Rudolph, and those darned elves…well, it unravels all of the progress I’ve made throughout the year.  My sweet children turn into wild leaping monkeys who make baby dinosaur screeching noises every time they hear Feliz Navidad.  Why, oh why, must that song be played constantly from Thanksgiving day on?  While others sit with hot cocoa admiring their twinkling tree and holy manger scene, I do well to make sure the baby Jesus doesn’t get flushed down the toilet.   At this moment, he’s missing…and what is a $29.99 nativity set from Walmart really worth with an empty manger?  Wherefore art thou baby Jesus?

Determined to survive, I’ve come up with five tips to take on the holidays:

Tip 1:

Be willing to make changes.  For instance, if you would spend the holidays pulling your child off the Christmas tree because he or she is determined to climb it, then don’t put a tree up.  It’s not the end of the world to not have a Christmas tree.  My daughter is eleven years old…and I haven’t had a Christmas tree in eleven years.  It wouldn’t last a minute in my house, especially now that I am outnumbered with two of them.  And why would I want to fight about a tree?  The holidays are supposed to be a time of joy for everyone…including me.  So, if it’s going to be a battle, it’s out.  Period.

Tip 2:

Create new traditions.  While I don’t put up a Christmas tree, my house is decorated both inside and out.  My walls are covered in sparkly red and white snowflakes, I’ve hung a large felt banner that says “Merry Christmas”, and ornaments are hanging from every door frame.  Holly drapes from windows and sparkly tinsel hugs the top of my kitchen cabinets.  Everything is secure and placed out of reach of little fingers.  The kids love it, and because they love it, so do I.  It works for us.  And if I want that cup of cocoa while sitting around a perfectly decorated twinkling tree, I’ll hire a babysitter for a few hours and find a coffee shop or a fancy hotel for that.  It’s all about balance.

Tip 3:

Be willing to have everyone come to your house for family holiday celebrations.  Chances are your house has been proofed for special needs kiddos while other family members’ homes have not, so to make life easier on everyone involved, just have celebrations at your house.  Don’t take on too much, though…order a pre-baked turkey or ham and have everyone else bring a side dish.  While it’s normal to want to go out to enjoy festivities away from home, it isn’t always practical.  Why not give your family the best chance to have a successful celebration?  Keep it at home when it involves the kids.

Tip 4:

Let your child dictate what she wants her holidays to be about.  Don’t get hung up on reading The Night Before Christmas, stringing popcorn, and making a gingerbread house.  Perhaps those were traditions you enjoyed when you were a child, but your child is unique and will have her own preferences.  My two kiddos love music and enjoy dancing more than anything else, so every night leading up to Christmas, we jack up the holiday tunes, put on our socks, and dance through the house like a bunch of crazy kooks.  Waving our arms around, jumping up and down on the beds, and sliding across the wood floors…Christmas is a celebration.  They have a blast as I burn off all of my extra peppermint bark calories.  It’s truly a win-win.

Tip 5:

Don’t put Christmas in a box.  Gifts are meant to be placed in boxes and wrapped up in bows, but Christmas is not.  Too often we get hung up on what Christmas is supposed to look like.  Hallmark Christmas movies drip with romance…church musicals usher in holiness and majesty…while tv commercials pull on our heartstrings (and pocketbooks) with tradition and nostalgia.  Christmas is all of those things, yes, but so much more.  It’s about love, acceptance, and celebration.  Whatever that looks like to you.  So, you are hereby granted the freedom to create your own thing.  Step outside of that box and go for it!

As you prepare to bring in the season, keep in mind how unconventional that first Christmas really was.  Jesus came to us by way of an unwed mother.  Born in a cave that was inhabited by animals, his first visitors were the poorest of the poor who had nothing to give.  There was no Christmas tree, no turkey dinner, no tales of St. Nick…and the only twinkling lights were from the stars in the heavens.  The gift that day was simple, and it’s a profound gift that has continued to be given each and every year since.  Jesus had a mom and dad who loved him and who would protect him.  And that was enough.  In fact, it was perfect.

images-2These are my thoughts on the holidays…may you and yours have a blessed season!

~mel

Understanding The Special Needs Mom

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The human brain’s primary goal is simple:  Keeping us safe and ensuring our survival.  Every time we formulate an opinion of someone, whether it’s a sixty second introduction or a lifelong connection, that opinion is based on whether our brain has determined we are safe or not safe in that relationship.  And often, we form those opinions in less than one minute of meeting someone.  We are a shallow bunch, right?  Within sixty seconds of meeting a brand new human being, our brains fire up life experiences, prejudices, and pre-conceived notions in order to size that person up.   There’s no fact-finding or exploration to the brain’s archaic process at all.  Our brains, then, are wired to feel instantly secure with people who are much like ourselves.  We not only want to survive and thrive, but we also want “our kind” to survive.

The mind of a special needs mom, however, is notably different which is one of the many positives that comes along with this unique journey.  Her primary goal is to not only keep herself alive (so she can necessarily take care of the special one in her life), but to also keep her child safe and to ensure his/her survival on a planet where individuals who have intellectual and/or physical disabilities are too often marginalized.  As a result, her brain is re-programmed to not sum people up in less than one minute.  The special needs mom, in fact, throws everything she ever thought she knew out the window the moment she comes face to face with her child.  In a flash, life is no longer the same…and never will be again.  Pre-conceived notions?  Prejudices?  Life experiences?  They no longer hold any sway over this mom, because her measuring stick has transformed into a magic wand…the woman suddenly wants to save the world.

When life flips to something brand new and unexpected in the blink of an eye, everything flips along with it.  From this point on, she’ll give everyone a chance to be kind and good and patient and accepting…because her child’s survival depends on the human race being what it needs to be.  Special needs moms, for instance, constantly seek out and watch to see how people view her child.  She can spot a soft face, a smile, and understanding eyes even in a large crowd and she will return the smile.  Always.  If you don’t believe me, try it sometime.   In addition, she’ll thoughtfully listen to how people respond to her child, hoping for the best.  Kindness and warmth, even when void of understanding, go a long way.  And when someone takes the initiative to bend down and look eye to eye with her little boy, it will catapult her heart into the heavens.  That one simple act speaks volumes:  “you have value” … “you matter to me” … “I don’t see myself as any different than you”.  By choosing to serve others, even with the simple act of intentional kindness, you are a living sacrifice.

Romans 12:1  “Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.”    

To a special needs mom, you can be cultured and educated or crass and unrefined…liberal, conservative, or a person who doesn’t give a hoot about politics…none of it matters.  As long as you have true compassion and acceptance for those who are physically and/or intellectually challenged, you are in her circle for life.  She’ll love you instantly and forever, because you and “your kind” actually are the key to the survival of the special needs child and the world as we know it.

The following pictures are of a little fella who was born with Down syndrome in an Eastern European country.  The first picture is of him in the “baby orphanage” when there was still hope for him finding a forever family.  The second picture is of him only a few months later, after being sent to a “mental institution” when he wasn’t adopted.  The final picture is of his grave.  Without touch, love, acceptance, and proper care, he died.  This is the reality of the world we live in.

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In our country, you might say, this kind of thing would never happen.  And you’re correct.  In the United States, an estimated 75% of children who are prenatally diagnosed with Down syndrome are aborted….in other countries, that figure jumps to 90%+.  Because of a genetic test, children who are diagnosed with an extra chromosome while in the womb don’t even get a chance.  The statistics are staggering.  There is no middle ground.  As citizens of this earth, we either value all life or we don’t value life at all.  Life not only matters while in the womb but also AFTER the womb.  It’s life y’all.

Consider for a moment what a world without individuals who have special needs might look like.  It would present an existence where the concepts of compassion, patience, and unconditional love are absent.  Every human being has a purpose, even those who by the world’s standards are less than perfect.  This is why the mind of a special needs mom is wired so differently.  Our mission is not about the survival of a political party or a church denomination…our mission is about saving the best part of the human race.  The human race, at it’s very best, is not power and strength…but when we purposefully choose to bow our power and strength to acknowledge the value of one who is considered “the least of these”.

“…and whatever you do for the least of these, you do for me.”  Matt. 25:40

Just my thoughts.

~mel

Superheroes & Special Needs Kids

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To most people, a superhero represents someone otherworldly who fights evil and promotes good.  This person is practically perfect in every sense of the world.  Balancing compassion and mercy with a raw hunger for justice, this warrior is able to overcome seemingly impossible odds in order to protect the weak.  He is a guardian, a defender, and as long as he is present, all in the universe is balanced.  

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And while most all special needs kiddos enjoy the likes of Spiderman, the real superheroes are quite possibly the ones who are behind the scenes in the day to day muck of life…demonstrating love, acceptance, long-suffering, and the patience of Job.

 

In my case, they are intelligent, beautiful young women who could earn just as much money babysitting for typical kids.  Instead, though, they choose to make a difference in the life of a child who doesn’t have the attention span capable for a Disney movie or a picture book…and who is unable to understand the rules of a simple board game.  

They could spend their time with a child who is is able to verbalize his or her needs, but choose to be with a  nonverbal kiddo who expects them to be mind readers, seeing all…knowing all…and being all.

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They routinely get smothered in slobbery kisses, slathered in mud-coated fingers, and clobbered by food that’s been thrown by the hand of a frustrated child…and take it all in stride, with a smile.

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Vigilance is constantly required to make sure the escape artist doesn’t breakout while under their watch and that no one ends up playing inside of the toilet, climbing up on a dresser, or hiding in a garbage can.  

Yet they don’t see a broken human being who needs to be fixed.  They see a perfect little someone who simply needs an extra set of helping hands.

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My Dream Team (as I call them) are amazing.  I trust them, depend on them, and adore them.  But when I watch my kiddos grow and blossom under their care, I know they are much more than any label I could give.  

Because they really are Superheroes.

Promoting Good.

Balancing compassion and mercy with a raw hunger for justice.

Overcoming seemingly impossible odds in order to protect the weak.

Guardians and Defenders.

Balancing the Universe. 

Practically perfect in every sense of the word.

The Cutting Movement…What Can We Do?

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Self-Mutilation.  Is it a trend?  A rebellious movement?  A sign of mental illness?  Or a response to trauma, stress, and/or abuse?  Current statistics are staggering,  suggesting that one out of every ten teenage girls utilizes some form of self harm.  Whatever the cause, it’s becoming an epidemic.  And all parents should be aware.

Contrary to what you might believe, the cuts are not random.  Created with razors, scissors, glass, metal, or anything sharp, the cuts present with pattern and intention.  Each slice has its pre-planned place, displaying a memory or representing a story.  Some girls cut words or symbols into their skin.  Others cut marks that represent numbers….the number of times she was bullied or abused or overlooked or even the number of times she failed.  And sometimes, the cutting is simply a way to fit in.

From teenrehabcenter.org:    

“Teens may experiment with self-harm as a form of pleasure. The body responds to minor pain by releasing endorphins, which has a numbing or pleasurable sensation. It can be the equivalent of “getting high” for a particular set of people. But while some teens may do this for the sheer thrill or at the suggestion of friends, experts believe that most teens self-harm in response to major stressors in their life….Self-harm happens among teens across all demographics. Much like substance use, experimenting with cutting or burning might be discussed among peers and viewed in the media, leading otherwise well-balanced kids to think about trying it.”

Listen, these are our daughters.  They are the young women who will lead the next generation of females.  Where are we going wrong?  If there is a consistent rise in teenage girls utilizing self harm, cutting and burning their bodies, I would argue these young women are not feeling empowered.  How do we hearken back to the days when women burned bras instead of their skin?  When women cut the rhetoric that pronounced them “lesser than men” instead of cutting their bodies?

Feminism has too often been labeled with a big negative brush stroke, and Christian leaders are partly to blame.  If you call yourself a “feminist” in the church, for instance, you are automatically labeled a pro-abortion baby killer. You hate men…and you certainly don’t buy into Ephesians 5:22-23…which means you might not even be saved.  This nonsense has got to stop.  Merriam-Webster defines feminism as the belief that men and women should have equal rights and opportunities.  That sounds very Christian to me.

Consider how feminism has shaped us:

Until 1920, women couldn’t vote.

Women could not don their running shoes in the Boston Marathon until 1972!

The Equal Credit Opportunity Act passed in the US in 1974. Until then, banks required single, widowed or divorced women to bring a man along to cosign any credit application, regardless of their income. They would also discount the value of those wages when considering how much credit to grant, by as much as 50%.

Until the Pregnancy Discrimination Act in 1978, women could be fired from their workplace for being pregnant.

We have come a long way, baby, and that is something to celebrate.  We can’t go back.  And yet this self-mutilation movement feels very much like we’re going backward.  Feminism, at it’s core, may have necessarily begun with the commonality women shared in having to fight for equal rights, but in general, and in the best possible sense of the word, it promotes togetherness…females literally teamed up together for a common cause.  So why can’t that cause simply be about empowerment?  About females defining who we will be in this upside down world?

One of my daughters suffered early childhood trauma in an orphanage before we could get to her, as a result, she battles depression, and she is now a cutter.  She was not a cutter, however, until she went into group therapy with other cutters.  More than one licensed counselor has told her this:  “I understand why you cut.  By feeling the pain of a cut, you are transferring the pain you feel in your heart.”  THAT is an excuse.  THAT is enabling.  And it’s coming from WOMEN counselors!!!

Cutting and/or burning is not a transfer of pain.  The fix is like a drug, it is temporary at best.  And it requires another cut…and another…and another…until all that’s left of the “fix” is hundreds of brutal scars.  That is unacceptable.  Our answer to these young women must be:  “No More!”  We help alcoholics and drug addicts by giving them twelve step support groups, and we tell them “No More!”  Our girls deserve the same.

Perhaps we need to get back on board this Feminism Train, ladies.  Feminism should be a positive term that promotes empowerment by encouraging a necessary support group between girls in a world that is pushing perfection like never before.  Our problem is not feminism…it’s perfectionism and the shame that comes with not measuring up.  We have a culture of girls who are defining themselves by the number of likes on Instagram, for goodness sakes.  This is madness.

In reality, we are all sinners who’ve been saved by the grace of God.  Not one of us is perfect in any form or fashion.  Don’t we all battle bouts of depression, pain, weakness, disappointment, failure, troubles, loss, and insecurities?  For some it’s worse than others, of course, but we all live in a world where sin is inescapable.  Like air, it invades our bodies every single day and will until we breathe our last breath.  Perfection is a fool’s paradise…it doesn’t exist…yet, it is an enemy that is stealing away our girls.  Our girls have to start being real, and in order to do that, they have to hear us and see us be real.  We are the example.  We have to take the masks off.  We have to remember and speak about the inheritance we enjoy because of powerful women who came before us and who didn’t allow themselves to be defined by the latest pop culture trends.  This begins with us.  Right now.

Hear the empowering voices of the women who fought to return us to our God-given place on this planet:  Susan B. Anthony, Elizabeth Blackwell, Florence Nightingale, Helena Rubinstein, Helen Keller, Eleanor Roosevelt, Mother Teresa,  Dorothy Hodgkin, Rosa Parks, and Margaret Thatcher.  They would all say that we should live our lives to the fullest, that we should use our rights and freedoms to create a better world that is more loving, peaceful, fair, and merciful.  We are not the weaker sex.  We are women who, when we ban together on anything, produce change.  We are beautiful.  We are strong.  We are smart.  We are leaders.  We are the glue in our families.  And we are feminists.

~Melanie

Five Things You Should Know About A Special Needs Mom

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Most little girls, at some point in life, play house.  Pretending to be a mom, they push their perfect little baby dolls around in miniature strollers, acting out the role of protector, provider, defender, teacher, and friend.  The role playing is not only healthy, it’s preparation for what is (hopefully) to come later on in life.  Yet I think it’s safe to say that not many little girls ever assume the role of a special needs mom.  As such, the God-given task at hand, when offered through either birth or adoption, is daunting and overwhelming.  The identity shift is enormous.  One moment you are heads, and the next, you are tails.  The contrast is honestly that stark.  And here are five things you need to know about the moms in your life who are on that journey:

  1. We are scared.  The unknown components of this adventure we’ve been called to traverse terrifies us at our core.    We juggle non-verbal kiddos who are prone to explore,  yet who don’t understand cars, direction, or stranger danger.  Our doors, therefore, display a host of different types of locks while our windows house hidden alarms.  We shudder when we hear news stories of special needs children being abused and mistreated…and we become physically sick, overcome with terror, when one of our own dies at the hand of bullying, a preventable accident, or an onset of sudden illness.  As we age, we think about our child’s future.  A lot.  We work tirelessly to set up a network of people who love them and who accept them, and we dare to dream that all will be ok even when we’re gone.
  2. We feel inadequate.  If you do an internet search on special needs children, you will find hundreds upon hundreds of opinions on what works best for the advancement and progress of our kiddos.  There are enough therapy tools to fill an entire city block.  It’s intimidating.  We’re intimidated.  Our minds play tricks on us as we wonder if we’re doing enough.  Sure, we love enough, but are we implementing the best procedures?  Is it our fault that our child is not making a needed breakthrough?  Most nights we are up late feeling guilty.  Kneeling down beside our sleeping children, we pet their heads, kiss their cheeks, and promise we’ll do more the next day.  And that is our intent.  However, each day brings new challenges, so again, we close our eyes on the day feeling inadequate….wondering why God chose us….hoping we’re enough.
  3. We need family and old friends.  While we may appear too busy or too distracted to enjoy a phone conversation or a visit, it’s true that it takes a village.  If you don’t slow us down, we will work ourselves to the point of exhaustion.  Please hear my heart in this:  You remind us of who we used to be before our identity became “the special needs mom”.  Your familiar voice snaps us back into the awesome reality that life is much bigger than our child learning to potty, communicate, or ride a bike by a certain age.   You are a gift to us in more ways than you can imagine.  Not only do we need to hear your voice, we need your smiles and hugs.  We need your presence.  If we make it, and Good Lord, we have to make it, a large part of that will be because of you.  So if you have a spare minute, call us or text us just so we’ll remember….because when you avoid us and when you’re silent, we forget.
  4. Sometimes people are cruel.  When we go out into public, we are painfully aware that we are taking a risk.  Because we’ve all experienced the stares, the off-handed comments, and the all-too familiar rejection, we are always in defensive mode when out and about with our children.  As mommas, we want to protect our kiddos from a world that doesn’t always offer patience and understanding.  But you can help with   that.  If you see a special needs mom out with her child, even if it looks like she doesn’t need your help, offer a word of encouragement.  Tell her she’s doing a good job.  Say a kind word about her child.  Let her know, above all else, that you “see” her and that you “see” her child.  Don’t look away.
  5. We make mistakes because we are frazzled.  We wake to find our child has painted his entire room in poop.  He eats the dog’s food with glee, but won’t touch anything that’s on his plate at lunch.  When we’re not looking, he dances on the dining table buck naked, sticks his head into the toilet, and tries to climb up the chimney.  He stuffs bark up his nose, hides rocks in his ears, and pees on the dog.   He laughs when you scold him and cries when you try to teach him.  He pulls his sister’s hair, hides in kitchen cabinets, and sleeps only four hours each night.  So give us a break.  If we snap at you, come off as a half-crazed nut job, or don’t answer a text right away, it’s not because you don’t matter to us.  It’s just that life is different for us.  We are a special needs mom!

Why I’ll Never Apologize To My Typical Children For Their Special Needs Siblings

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The dreaded guilt trip.  If you’re a special needs parent who is also juggling typical children, you know this trip all too well.  Where’s that ticket back to normal, right?  Managing necessary therapies and medical appointments on top of meeting every single one of your differently-abled child’s needs, you have very little time to meet the desires of any person who can take care of himself.  Are you hungry?  Can you make a sandwich?  Then don’t ask me to stop what I’m doing to make food for your lazy bones.  haha.  Can you relate?

Life before becoming a special needs parent might have been about leisure, even though at the time we didn’t quite realize how easy we had it…but now our lives are about pure necessity and survival.  As a result, parents often feel they need to apologize to their typical children for the unique challenges a special needs sibling brings to the family, but I never will.  Here’s why:

First, I’m a believer in The Lord and His word.  In Exodus 4:11, we become privy to a conversation between Moses and God.  In this heart to heart, God explains that He is the One who creates disabilities.  Scripture says:

“Who has made man’s mouth?  Who makes him mute, or deaf, or seeing, or blind?  Is it not I, the LORD?”

Then again, in Jeremiah and in Psalms, we are reminded that God formed us and knew us even before we were born.  In short, if God formed and created my two specials with Down syndrome, and if in His great wisdom, He also chose to not give them the gift of verbal communication, then who am I to judge?  or to complain?  or to apologize?  If in His sight, Hope and Charlie have been perfectly crafted, then they should be accepted and embraced as such.

Second, life is hard.  With the implement of sin and our arch-nemesis (satan along with his slimy little minions) life was designed to be a battle and a struggle.  Without the hardships, though, there would be no test.  And without the test, there would be no need for a choice of salvation and the promise of eternal life.  James 1:2 says:

Count it all joy, my brothers, when you meet trials of various kinds” … emphasis on when.

In a nutshell…if you are a believer, life will not be a big cake party…even though I LOVE cake, especially with icing, don’t you?  But God says, “No! You shall not always have cake” (my paraphrase)…and it’s for a very good reason.

See Romans 5:3-5:

“….but we rejoice in our sufferings, knowing that suffering  produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love  has been poured into our hearts through the Holy Spirit who has been given to us.”

And James 1:2-4:

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

The trials and hardships, according to God’s word, are incredibly good for us.  They sharpen us, mold us, and teach us to become more pliable so we can ‘be complete and lack in nothing’.   Do you want tenderness?  brokenness?  gentleness?  patience?  Then spend some time with someone who is unable to communicate with words or with someone who is unable to walk or to hear.  Look into their eyes and see past the disability into their heart.  It will change you.  It’s an indescribable gift when you see someone for who they are.  Why would I ever apologize for giving my typical kiddos that daily gift?

Third, having been brought up with a precious grandmother who was handicapped, I have personal experience.  Stricken with what doctors called the most severe case of rheumatoid arthritis they’d ever encountered, she couldn’t walk, turn her neck, use her arms/hands…and couldn’t feed, dress, or bathe herself.  She never held me or hugged me, because she wasn’t able.  I, however, never knowing her any other way, knew her simply and utterly as my Grandmomma.

When she needed water, even as a young girl who had to step up on a stool to reach the faucet, I’d jump up to fix her a glass with a straw.  I remember holding it for her and allowing her to drink until I heard the familiar slurp of the last drop.  When someone would call on the phone, I’d stand and hold the phone to her ear for as long as she wanted to talk.  “A little closer,” she’d say with a sweet grin.  And I’d proudly oblige.  If she wanted the TV channel changed, I changed it.  If she had an itch on her nose, I grabbed a tissue to scratch away.  I did all of this as a little girl and never thought of it as unusual at all.  When I became a teenager, she’d have me read the Bible out loud to her.  At the time, I thought it was because she wanted to hear it…now, I realize she wanted me to hear it.  I loved that woman so much.  She was funny, smart, and the strongest person I’ll ever know.  If I sit quietly for a moment, I can still go back to the pew I sat in at church, beside her wheelchair, and I can hear her singing “On Christ the solid rock I stand, all other ground is sinking sand…all other ground is sinking sand.”  It will always be my favorite hymn.

Because of my grandmother, Elaine Morrow, I’m who I am today.  I wouldn’t change that experience with her for the world.  When I see someone who is handicapped in any way, instead of turning away, my heart leaps and I leap along with it…rushing to say hello, to shake a hand, or to give a smile.  Because of her,  I love the special needs community with a love I cannot begin to describe.  She left an incredible legacy that is now being passed down through the lives of Hope and Charlie.  I see it so clearly.  During my childhood, I was given the invaluable gift of compassion and of service through my grandmother…and  I rejoice in that gift.  As that legacy was passed to me, it is now being passed along to my typical children as I watch them care for their special needs siblings.  I’m thankful and not ever sorry.

So, to all of the special needs families who’ve heard the familiar whispers:

  • What about her other children?  Do they get enough attention?
  • I’d never want to be in a family with someone who has special needs.
  • Do they even have a social life?  I bet their kids cannot wait to grow up and get out of that situation.

When you hear those empty words, just stand firm on what you know:

  • Your child was created perfectly by a God who doesn’t make mistakes
  • Life for the believer is always going to be full of trials and hardship
  • By serving those with special needs, you are serving The Lord
  • By allowing your typical children to serve their special needs siblings, you are teaching them to serve The Lord
  • Your typical children are learning a vital life lesson that will chip away at selfishness, corruption, haughtiness, and greed….revealing virtues that are most important.

“Whatever you do for the least of these, you do for Me.”  Matthew 25:40

~Mel