Just some random, irrelevant, humorous, and hopefully inspiring musings on life, love, faith, widowhood, remarriage, adoption, blended families, caring for a handicapped child, mothering seven children, chickens, cooking, grief, over-coming grief, and everything else in between. Just Keep Livin!!
I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.
We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does hewant? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.
The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.
This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.
That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.
A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –
Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!
Kids responded with glee and excitement and Yays! all around and asked –
Who’s going to watch Luke?
We’re going to bring him, we replied.
He’ll enjoy getting out of the house.
Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!
This is a constant dilemma we face.
We brought him.
He did make it very difficult and tiring.
We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.
We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.
Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.
About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.
Let’s give them the 30 minute warning
My wise husband suggested.
The moans of disappointed began –
Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)
WHY DO WE HAVE TO BRING LUKE? They wailed
And we responded, frustrated as well and exhausted, questioning the excuse we offered-
Because he’s part of our family, and we need to include him occasionally.
We currently do not have a solution for this problem.
It is what it is.
We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.
This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.
“This is holy work,” I begrudgingly reminded myself a day after returning home from a much needed vacation; a week of relaxation, sun, and reconnecting with my husband, and here I was now, again, changing my 14 year old’s diaper, my Lucas boy with profound special needs 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 “Holy Work”
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.
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.