There’s a time in your life that is so profound, it’s beyond words. Maybe you were a young child sitting in the middle of a long pew, and you had to work your way through a group of old ladies who smelled of Avon’s Sweet Honesty in order to get to the aisle … or perhaps you were at a revival meeting where the visiting pastor had a shock of white hair, wore a three piece suit, and spit enough spittle to fill a small bucket when he got on his holy roll … or was it a camp meeting, way out behind the cover of tall pines around a blazing bonfire with the sounds of crickets and frogs competing with the three part harmony of Our God Is An Awesome God? … Where it happened is only a minor detail. What really matters is that you’ll never forget how your heart thumped, how your hands trembled, and how your knees nearly buckled when you realized you were lost and in desperate need of Jesus.
It had to happen in that moment.
Because the sense of urgency was beyond anything you’d ever experienced before.
And so you asked the Savior Of The World into your heart.
You gave Him your life.
All of it.
And for a time, you allowed Jesus to lead you. The focus was on Him. After all, what did you, a mere sinner who was created from the dust of the earth, do to deserve eternal life? Not a thing. Your life had been bought with an extreme price, and you were fully aware of the fact that Jesus had left the glory of heaven to come to earth and suffer an indescribably cruel death for your sake. That if you had been the only one, He would’ve died for you.
Oh my goodness, with the weight of that truth comes a crashing wave of humility. So great is His love. But the human race is born into sin, and as has been proven throughout the passage of time, sin is a difficult habit to break. Abraham, Moses, King David, Sampson, Peter … each a legendary patriarch of our faith … yielded to sin. To think we’re immune to darkness when such strong men of the faith fell, is evidence of pride. And sin all began when the enemy of all enemies dared to believe he deserved to be on equal footing with God.
“Let ME be God!”
Pride was Lucifer’s achilles heel, and it remains at the root of every defiance against our holy Father. When we sin, no matter the category it falls under, the bold heading at the top of the page is PRIDE. Our will over God’s will. Yes, we begin our journey of salvation on the right path, but what the world has to offer is so tempting, so seductive. And eventually, we stumble. Sometimes we fall flat on our faces.
Thankfully, though, we serve a God who is absolute grace and mercy, and in His abundance of love for us, He lifts our blinders to allow us to get a glimpse of who we are. Just like a child who is caught in the act of disobedience, He shines the spotlight on our weaknesses. And in those divine moments, we again realize that we are powerless against our nature. That without Him, we truly are nothing. This is the gift of repentance. This is how we are transformed into His likeness. It’s part of the salvation process, the working out of our faith….so when we finally do see our Savior face to face, we’re ready.
“But we all, with unveiled face, beholding as in a mirror the glory of the Lord, are being transformed into the same image from glory to glory, just as from the Lord, the Spirit.”
Just my thoughts!!!
What is God’s price for Kingdom real estate?
What is the down payment for that mansion made of gold?
The parable of the talents, found in the book of Matthew, suggests that how we use our lives will hold weight in heaven.
Just as the soft whisper of a drifting spark can ignite a roaring blaze of heat, every person has been given a gift, a purpose….a spark. Within each of us, lies a flicker of hope, love, and encouragement that can set the world on fire.
Some have been gifted with monetary wealth, some are able to build with their hands….while others have the ability to empower and teach. Think about it. Among us are listeners, gift givers, thinkers, healers, servants, inventors, writers, and sympathizers. We each have something that was given to us so we could give it away.
We all have something unique to give.
Scripture doesn’t say “Well done thou good and successful servant” … it says “faithful servant”. We aren’t measured, then by how the world rates success. The Lord cares about our efforts. He wants us to unleash our gifts with reckless abandon from an abundance of love.
So when all is said and done, on the day we face the Lover Of Our Souls, we will be measured simply … by the purity of our hearts and by our love.
Just my thoughts!
Have you ever wondered what God’s calling is for your life? The answer is probably much more simple than you ever imagined. Click the YouTube link below and leave a comment to share your thoughts:
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.
“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.
Autism and Sensory Processing Disorder, down syndrome, melanie hollis, non verbal, parenting a non verbal child, raising a non verbal child, raising special needs kids, special needs blog, special needs kids, special needs mom, special needs mom blog, Special Needs Parenting
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:
- 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.
- 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.
- 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.
- 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.
- 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!
down syndrome, melanie hollis, parenting a non verbal child, raising a non verbal child, raising special needs kids, special needs blog, special needs mom, special needs mom blog, Special Needs Parenting
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
There’s no time to think once you become the parent of a special needs child. I mean, literally, there is no time to think. In reaction mode, you are simply expected to be on every minute of every day. You anticipate constantly, actively seeking out ways your child could injure himself, choke on something, and escape from the house. It’s very much like being on a never-ending covert operation to protect those in your care. Once a well-meaning pediatrician who isn’t raising special needs children said to me in jest: “You know, you could order a couple of those big bubble balls and just roll Hope and Charlie around inside of them all day every day.” He laughed. I didn’t. I’ve had to reclaim pinched legs from the angry mouths of furniture. I’ve had to dig a whole piece of Chex cereal out of a throat with my fingers as my child was turning blue. And I know what it’s like to search for my little girl after she managed to quietly sneak away from a beach house after seeing a little boy playing ball down the street. Give me the darn bubble ball!
While it’s harrowing and not for the faint of heart, I must tell you, being a special needs parent is slowly transforming me into someone quite different…maybe even better. In three significant ways, in fact, this adventure has forever changed my view on life:
Lesson #1: To be remembered means everything.
I don’t sweat the small stuff anymore. For instance, I no longer fret over not being invited to a party, a shower, a wedding, or even a family holiday dinner…I get it. I’m different now, and there are people who will never feel comfortable with me and my unconventional lifestyle. As a result, I’ve learned that missing out on an invite just means I can use “babysitter” time to do something I love, whether that’s a movie, a dinner out, visiting the library or a museum, or laying on a beach with my toes in the sand. On the other hand, however, when those invitations do come, albeit they are very rare, I appreciate them more. To me, each invitation says: “I know you’re in the trenches every day, secluded from the typical world, but I haven’t forgotten you. Even though you might not be able to come to my event, I want you to know that you were thought of.” Yes, to be remembered, means everything.
Lesson #2: Collecting memories is more important than collecting dust.
Continuing in the vein of not sweating the small stuff, I also don’t give a hoot about whether my kids or my house look like they’ve been torn from the pages of Southern Living Magazine. My kids have sensory issues and neither like to wear clothes, so if I can manage to keep their private parts covered, it’s a good day. And my house? Thing-a-ma-bobs and trinkets become projectiles for non-verbal, temperamental kiddos (and sometimes for momma too)…so, my house is gloriously bare for the most part. My kitchen? It never closes. And I spend more time in the laundry room than in my bedroom and bathroom combined. I am a first-born who loves order, schedules, things that match, and clean smelling things (and people) … God has played a hilarious joke on me. But you know what? When my kids allow me to fix their hair and dress them up, and on those rare occasions when my house smells fresh and looks crispy clean, I bask in it. I mean, I sniff my little ankle biters and kiss their chubby cheeks until they’re shoving me away … and I walk through each room taking in the order of it all. In those times, though, I often reflect on the person I once was and regret how much time I spent on things that don’t matter. Pretty houses and fashionable clothing rot away and disappear, but the time spent mending a hole on a stuffed teddy bear’s foot, holding a hand that has just made a mud pie, and jumping up and down with your kids on a bed that hasn’t been made yet…those moments will stand the test of time.
#3: Love is always the answer to everything.
All of this brings me to the last and most important point. As a parent of a special needs child, I realize time is fleeting. Kids who have special needs often don’t enter the world with the mightiest of immune systems. When they go down, they sometimes don’t recover. I’ve spent months in a hospital as my daughter has gone through three very serious open heart surgeries, and on one of those occasions, she coded. I can take my mind back to that moment and replay it all in vivid detail. In that instant, I realized how fast I could lose her and how quickly everything would change. An invisible switch flipped inside of me that day forcing me to look at my life in a brand new way. If everything can change in an instant, then I must make every attempt to live my life to the fullest each day.
My favorite apostle of the twelve is Peter…probably because he didn’t always get things right, but still managed to love and serve with reckless abandon. Consider these words:
1 Peter 4:8-11 ….”above all things have fervent love for one another, for “love will cover a multitude of sins.”Be hospitable to one another without grumbling. As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God. If anyone speaks, let him speak as the oracles of God. If anyone ministers, let him do it as with the ability which God supplies, that in all things God may be glorified through Jesus Christ, to whom belong the glory and the dominion forever and ever.”
The greatest way being a special needs parent has changed me and my view on life is by chipping away all of the minutia, trivialities, distractions, surpluses and excesses in my life. This incredibly challenging journey has broken me down and has allowed me to “see”. So if I grab your neck the next time I see you and say “I love you” … well, you’ll know why. (and if I don’t, it’s only because you’re giving off some sort of vibe telling me to keep my danged hands to myself.)
Know this about me. My home is open. My heart is open. I always want to hear from you. I want to talk to you and to hear your voice. I want to hurt when you hurt and to rejoice when you rejoice. I love you. I honestly love you.
“…and the greatest of these is love.”
Oh, how I rejoice at being called to be a special needs parent. For once I was blind, but now I can see!
“It ain’t what they call you, it’s what you answer to.”
― W. C. Fields
I’ve never been one to prescribe to labels. Fact is, I abhor them. And so should you. Think about it, labels begin back when we are but wee babes. Little Johnny, for instance, is either quick or slow to walk and talk, either a cuddle bug or wildly independent, friendly or shy….athletic, artistic, or else, a thinker. By the time he enters school, his path is set. The poor kid doesn’t have a chance. He’s been labeled.
“Once you label me you negate me.”
― Søren Kierkegaard
If your child has special needs, though, those labels become abysmal. With each new diagnosis comes a boorish exploration into unchartered territory fraught with ambiguity…laced with immeasurable fear. While it may be delightful to dream of little Johnny as the boy whose traits will one day lead him to Cornell’s prestigious architectural program….it is not so pleasant for a parent who worries about how society will treat her child who has Down syndrome or Autism when he reaches adulthood. Will he work? Will he have friends? Will he remain healthy? And the dreaded…..What will become of him if I die?
Because there is such a tremendous learning curve and so much uncertainty attached to each one, working through labels is beyond difficult. For example, “Apraxia Of Speech”, simply put, indicates that a child cannot communicate verbally. But that label does not necessarily imply the child will never speak…just that he is not speaking with words at the moment. While therapeutic techniques will help some children with Apraxia, those same techniques will not even budge others who have the exact same diagnosis.
And this is where labels morph into daggers, stabbing away the joy from life.
Picture this conversation:
Mom #1, trying to be helpful: “So, your daughter has Speech Apraxia? Have you tried sign language, speech therapy, communication apps, and PECS?”
Mom #2, feeling frazzled beyond definition: “Yes, I have tried it all.”
Mom #1, showing a bit of doubt: “But were you consistent with it? Because MY child used to have Speech Apraxia too, but when I was consistent, making sure to spend focused time each and every day working on all the techniques suggested by our therapists, MY child started speaking.”
Mom #2, now feeling like an utter failure: “Yes, I assure you , I am consistent with all of it.”
Mom #1: (offers a pity grin before walking away)
See? The proverbial “pecking order” is alive and well in the special needs community as well. Not only is the special needs child labeled within the typical community, but he is also labeled within his own community. Measurements such as high functioning, low functioning, and spectrum are bantered about as if those words are describing an “it” instead of a “child”. And it is degrading. Dehumanizing. But worst of all, labels serve to desensitize a society toward those who need kindness, generosity, and acceptance the most.
“I am a rare species, not a stereotype.”
― Ivan E. Coyote
As the mother of two children who have been labeled with more junk than I have time to list, I wish to suggest we embark upon a new adventure together. Doctors, Psychologists, Psychiatrists, Counselors, and Therapists are always going to utilize labels since that is what they have been trained and are paid to do. However, as parents, we have a choice to NOT become entangled in the webs they weave. Because, honestly, what does a label really mean? My children are simply “who” they are. A name or a diagnosis does not and should not ever define them.
Hope, for instance, is neither Down syndrome, Speech Apraxia, or a heart defect.
She is a nine year old little girl who dances with abandon to every Taylor Swift song and who giggles until she can’t breathe when her tummy is tickled. She can dribble a basketball better than many young athletes her age and is mischievous most all of the time. When I’m hurting, she instinctively knows, and pulls my head down upon her shoulder to comfort me. She wants my fingers to interlock with hers when we hold hands, and her favorite food is french fries. Hope is very much a person. She is not a label.
“I read in a book once that a rose by any other name would smell as sweet, but I’ve never been able to believe it. I don’t believe a rose WOULD be as nice if it was called a thistle or a skunk cabbage.”
― L.M. Montgomery, Anne of Green Gables