Today is my 49th birthday. Don’t you find that as you get older, birthdays serve as a time of reflection? They become milestones, markers of sort, that represent who we are and the meaning of our existence. I’ve made some brilliant moves in my life, but I’ve made some whopper mistakes as well. While my heart holds fountains of joy, it also reflects the stagnation of regret. It’s life. And all blended together, the final hope, perhaps, is that our lives end up as a mirror, displaying only the image of our Creator. Where Melanie once was, now is only God.
My two youngest are non-verbal. And they get it. They were born getting it and as a result, they’ll never harbor an ounce of regret. Hope and Charlie will always be image-bearers. People consider them to have special needs, but those people have it all wrong. It is we who can learn from them. Here is my morning birthday celebration with the two who have turned my life upside down and all around in the most amazing way. Happy Birthday to ME!!!
As a parent, how often do you rush to meet the wants and needs of your children? If you’re anything like me, it’s a constant. And it’s a pleasure, too, isn’t it? To have the opportunity to pour into a life. How much more, then, does our Heavenly Father, who is perfect love, pour into us without a moment’s hesitation? If you can relate, you’ll enjoy this vlog:
Would love to hear from you!!!
Are there times you feel guilty about praying about the small things? Especially when there are BIG things going on all around you in world? Well let this VLOG encourage you today. God cares about the little things!
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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