Why You Should Care About Special Needs Children

 

It can be difficult to understand the complexities of raising a special needs child if this calling is not part of your daily reality. I get it. I never gave these children nor their caretakers a second thought before I had a handicapped child. It’s hard to empathize with a situation without experience.

 

My goal in writing – in books, on the blog, and on social media – is to tell stories that portray all of the aspects of raising a special needs child – the demanding, the taxing, the beautiful, and the joy.

 

There is undoubtedly a blessing. These kids are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly father’s love and care for his children. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about BUT –

 

Raising a special needs child is a massively exhausting undertaking as well.

 

A few weeks ago a friend’s 8 year old daughter unexpectedly passed away. This little girl was never supposed to survive; however, these kids often have a way of proving the experts wrong. I recently asked her mama if the new ease of life was haunting because when you live in special needs world, there are rarely moments of ease. It’s like being in a combat zone. You’re always mentally anticipating your child’s next basic needs – hunger, pain, angst, smell, what, where, when, why – all the time. These kids often don’t grow up and become independent so there is no end in sight which can feel overwhelming.

 

One of my greatest goals with The Lucas Project – a non-profit organization to assist special needs families in rural Tennessee – is to educate people on why they should care – even if it’s not a part of their daily reality.

 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40

 

These children are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caretakers, these children could not survive.

 

I would admonish you to care about these kids and their families because you don’t have to care, and that’s a blessing.

 

Special needs may not be a part of your daily reality, but it is a reality for 6.7 million children (nces.ed.gov) and often includes:

 

Bathing a grown child

Feeding – either by utensil or tube feeding – often restrained in a special chair.

Diapering a thirteen year old

Wondering at times if one day you’ll be diapering a thirty year old.

Restraining a teenager who has become aggressive due to puberty.

Entering the local ER in the middle of the night to play a guessing game for the next 24 hours as you try to determine the cause of angst in your non-verbal child.

Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts.

Attempting to distract a child who is frustrated and banging his head against his crib.

Sleeping with a baby monitor beside your head for 18 + years

Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment or to make sure your child is still alive.

Spending the majority of your free time in a doctor or therapist’s office.

Not being alone with your spouse in years because there is no one you trust to care for your child in your absence.

Suffering extreme pain and popping Advil like it’s candy because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.

 

You should care about caretakers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem, and in rural environments, lacking in professionals to even help address the problem!

 

You should care if you live where resources are plentiful because there are people who live in rural communities where resources are sorely lacking.

 

You should care if your children are healthy because there are parents who manage a child’s chronic illness every day of their lives.

 

You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it – because they do.

 

Please consider a donation to The Lucas Project so that we can all begin caring or check out TheLucasProject.org to learn more.

 

Just keep livin.

How to be Obedient to the Call God Places on Your Life

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“This is holy work,” I begrudgingly reminded myself a day after returning home from a much needed couple’s vacation; a week of relaxation, sun, and reconnecting, and here I was now, again, changing my 13 year old’s diaper, my handicapped boy Lucas who was currently on his third bout of diarrhea in a month; so many wipes, diapers, hand washes, and missed school days – #buttwiperforever.
Continue reading “How to be Obedient to the Call God Places on Your Life”

A Story for an Unborn Child

I didn’t figure my first post back from having a baby would be about this topic. I assumed it would be something about the baby or how our family has changed or is coping, but a horrifying scandal quickly rattled social media over the past 24 hours. A video (disclaimer, it is brutal) caught my attention yesterday with the title, “Planned Parenthood Uses Partial Birth Abortions to Sell Baby Parts, and as I watched my blood boiled and my heart ached. 

 

I realized this is a post that must take precedence above any other because this is for all the Annabelle’s who will never see the light of day and for all the Luke’s who will be decimated by sundown.  These words are for all of the unwanted and forgotten souls who will never see the sun this side of Eternity.  This is for all babies – born or unborn.  

This scandal is personal because I was repeatedly admonished in 2004 to abort my second child Lucas because he wasn’t “perfect” in the estimation of the medical professionals. For more of his story see Miracle Boy, Lucas, or Worst Travel Companion Ever…. This is also an issue I don’t easily stay silent on especially since having Luke has enriched my life and opened my eyes in so many ways to the beauty of life, the reality of what healing means, and the unconditional love the Father bestows upon each and every one of us.  I have no idea how we have become a nation of people who not only kill our babies but then we also turn around and sell their limbs and appendages as products. I look at my sweet baby girl Annabelle, five weeks old, and cannot fathom how I could have legally killed her only a few weeks ago –how her limbs could have been ripped from her body and her heart or lungs gutted and sold to the highest bidder.   

anna
In the midst of the Planned Parenthood video going viral yesterday, I despairingly said to a friend “What do we do? What can we do?”  Not even as Christians but as human beings?  Americans? Living in the land of the free, the home of the brave?  The exception, of course, if you’re an unborn baby then you’re not so free. Or a mother facing an unplanned pregnancy or a father threatening to break up with a woman unless she aborts her baby – then, not so brave.  As a culture, if we have a shred of morality left in our souls, how do we right the wrong of millions of babies being killed?  How do we reverse such a sickening mindset which says it’s okay to rip our children apart and sell their body parts?  Where do we even begin?

We begin by finally opening our mouths and calling out the truth for what it really is – it is wrong.  We have a hard time calling anything wrong in our day and age, but it is wrong to rip babies apart and slaughter them in such a way as to preserve certain body parts to be able to sell as a product.  

IT IS WRONG.  

We begin with brave men and women telling their stories.  

Stories of regret, stories of shame, stories of rising above the shame, stories of hope and stories of pain.  

All these stories must be told and circulated so that the shame lessens, the healing begins, and the voices rise to a loud cacophony that screams hope to the masses, hope for a different way, and hope for life.  Mothers who have chosen to go against the advice of the medical professions and carry these “defective” children to term and then commit to raising these children also need to tell our stories.  We have a different story, but it is still a story of pain, of heartache; hope, redemption, and joy in the midst of a difficult situation.  Our stories can change the culture.  Not acts of violence or social media rants but our honest, individual experiences woven together will begin to make a difference in our society and in the world at large.  These stories must be told and retold for they will change lives. These brave words will, one by one, save lives.

All I have to offer these unborn babies is my story.  I started this post with a gruesome video, and I will end with a hopeful one. A video which tells a tale of how any abortion story could end differently – a video of beauty rising from the ashes.
Tell your story.  Or listen to someone who has a story to tell.    

Just keep livin!!

WHY DIDN’T YOU BRING LUKE?

“Why didn’t you bring Luke?”

As a family with a special needs child, we often hear this question from well-meaning folks, and there’s not a simple answer just like Luke is not a simple child. Luke is my severely handicapped son, and I love him dearly. I have fought for him to have the best he can possibly have in his circumstances. I have gone above and beyond to make sure that he is comfortable and stable in life because the truth of Luke’s world is that he does not live with mild handicaps – he lives with major handicaps – handicaps most regularly functioning people will never understand: physical, mental, and emotional limitations along with lacking in gross motor skills.  Even I, his mother, don’t fully understand at times; however, I allow for the fact that I don’t understand as I seek to make his world one full of stability and love. At a routine twenty week appointment while pregnant I was told that his brain was so full of cerebral spinal fluid that I should consider abortion because it was highly unlikely he would survive, and if miraculously he did, he would probably die in my arms. Luke and I have been fighting ever since.

Luke is now fourteen years old, a complete miracle who continues to shock and amaze even the most skeptical of experts. His brain continues to develop. He continues to progress. His eye sight is better than anyone would have ever predicted. He has begun to say a few words; however, even with his continued progress and accomplishments, Luke is still and will always be a much more difficult child to care for than my other children are. He is a fourteen year old in diapers. Full time diapers. He can speak a handful of words to get his point across such as more, all done, juice, and eat. He walks, with assistance, but not for long distances. He becomes extremely agitated with any new experience such as people, environments, foods, or videos to name a handful which make exposure to anything new a tiring and exasperating experience for his immediate family. When I say he becomes agitated, I mean specifically he screams “ALL DONE!” until the new is replaced with something old and familiar which is why taking Luke anywhere is an overwhelming task for all involved.

We do attempt to integrate him into limited family activities but not so much for him, but for our peace of mind as his parents and for all the others who ask the question, “Why didn’t you bring Luke?” We (his family and society) need to feel like we are including him when the reality is he would be much happier and more content in his familiar environment at home, walking outside, eating lunch in his reliable chair, and retreating to his den of safety, his room, to watch one of his beloved videos. Recently we included him in a two hour family Easter egg hunt at church. We packed his bag, diapers, wipes, sippy cups full of apple juice (the only beverage he will drink), a change of clothes, and his wheelchair, along with our six other children. We loaded him into the van which was confusing and disorienting for him because he associates the van with going to school, and then we proceeded to hear “ALL DONE!” screamed at the top of his lungs for the half hour drive to the church. When we arrived he was content as long as one of the parents (not his siblings) was walking him along the track that encircled the field where the hunt was occurring (so, no he wasn’t participating nor was that parent participating) or eating skittles which he happily discovered when one of his siblings offered to share a package with him. A package turned into about 20 packages within an hour as the “MORES!” grew louder and more persistent. We left with a green/blue/red (he spit out the orange ones) juiced monster, skittle juice in his hair, clothes, face – every visible body part, on our hands. Good thing we had wipes in the bag.

theskittlemonster
Luke, the Skittle Monster

In order to keep him pacified on the car ride home we frantically stopped at McDonalds to pick up food and then fed him, slowly, bite by bite lest we hear the dreaded “ALL DONE!” or worse yet, ear piercing screams for the thirty minute car ride. Once home, we hosed him down, again, with multiple wash cloths, scrubbed the entire bench seat in the van (which still has remnants of ketchup and mustard forever etched into the fabric) brought him to his room, closed his bed, and popped in a video which he was entirely too happy to see. Then we all breathed a huge sigh of relief. That’s our reality with Luke for about two hours. Imagine an actual family vacation with him, in our travel trailer, or worse yet, a hotel room.

My late husband and I tried the hotel room once, and it was enough of a disaster for us to vow never to make that mistake again. We took two year old Luke and his older brother Caleb on an overnight trip to Frankenmuth, Michigan, the Christmas city, full of joy and happiness and for our family, full of incessant screaming from a little boy who was not at all in the holiday spirit. Luke was so distraught at the change of environment that he repeatedly screamed throughout the day and night, banging his head against the pack and play, bloodying his face, until we finally gave in and gave up, packed the family’s belongings at 1:00 am and drove the two hours home because he would not stop disrupting the entire hotel.

I appreciate people’s intentions but what I want to say is this: if you do not have a special needs child you cannot understand. We, the parents don’t even fully understand at times! Most of us are doing the absolute best for these children, and it is difficult. Our patience runs thin. Our mental stamina wears down. We beseech the heavens for answers and finally succumb to the knowledge that God is God and we are not and for some reason we were given the sacred responsibility to raise these special kids beyond our understanding or comprehension. We love these children from the depths of our souls, but you stranger (or friend or teacher or family member) need to understand that as their parents, we understand things about them from the depths of their souls that most cannot, nor will not, ever understand.

I know Luke associates me with Veggie Tales. His own mother. When he sees me he breaks out into singing a Veggie Tale song. This stems all the way back to when he was one years old. He also associates me with the song Amazing Grace which I sung to him every day while he was in my womb and then again as I rocked him for two weeks in neo natal after he was born. Luke associates me with the crocheted blankies I’ve made him throughout the years and with counting each and every step that we walk up as we exit his room to the kitchen. Luke doesn’t enjoy it when people love on him, hug him, kiss him, or cuddle him, never has, never will. You can, if you need that for you, but it annoys him. He doesn’t feel loved through those actions. Luke experiences love through chocolate cake, or brownies, or singing songs, or doing goofy paddy cake with his feet. I know this about him; I’m his mother. I know Luke hates new and to bring him somewhere, on a family vacation, is not loving for Luke, it is actually borderline abusive to not only him but to his entire family. We can’t explain to him why his entire schedule has just been uprooted in an instant, and he can’t explain to us why he’s so upset so instead he screams and screams, the only form of communication he knows for his angst. We owe ourselves as parents the comfort of getting away occasionally without the added stress of a child who doesn’t even want to be there. We owe that to our other children, and most importantly, we owe it to Luke. That’s why any resources which are available to help families such as ours or others are so greatly appreciated and pursued, especially in times of much needed respite. That’s why we need more resources such as day camps, respite care centers, equipment, and especially trained people to help with these children.

Ryan and I often discuss what the future holds for Luke. We’re honestly not sure. My motherly instincts want to protect him forever, here in my home, where no one can take advantage of him or harm him. My wifely instincts are also really excited for the day when all the kids will be out of the house, and my husband and I can enjoy each other’s company traveling the world. I don’t know what Luke’s future looks like, but I have about four years to get some sort of loose plan in place for him. My ultimate desire looks something like a faith based retreat type of living quarters within twenty minutes of my home – not a very probable or viable option anytime in the near future. I don’t necessarily want to be a full time caretaker for my twenty year old son, but I’m not sure I’ll be comfortable placing him in a state run facility either. I also envision him attending a learning facility by day (physical, occupational, and speech therapies) and coming home at night with an aid to help us and him. His future, especially where we live now in rural Tennessee, concerns me because I’m not sure what my options are. Families with special needs children just want the best for their children. We want them to be safe, have fun, and to be comfortable, and we need more options, especially in rural environments, to make these hopes and dreams a reality not only for these special children but also for the families that have been entrusted to care for them.

Just Keep Livin!!