What I want you to know about raising a severely impaired child

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Jessica Ronne.

“Why didn’t you bring Luke?”

My husband and I often hear this question voiced from well-meaning folks and there’s not a simple answer just like Luke is not a simple child. Luke is my special needs son, and I love him dearly. I have fought for him to have the best he can possibly have for 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 that most normal people will never understand: physical, mental, gross motor skills, and emotional handicaps that I, his mother, don’t fully understand at times; however, I allow for the fact that I don’t understand, and I seek to make his world one full of stability and love. At a routine 20 week appointment while pregnant with him, I was told that his brain was so full of cerebral spinal fluid that I should consider abortion because it was highly unlikely that he would make it to birth, and if miraculously he did, he would probably die in my arms. Luke and I have been fighting ever since.

Luke is now ten years old – a complete miracle who continues to shock and amaze even the most skeptical of experts. His brain continues to enlarge. He continues to progress. His sight in one eye is near perfect. He has begun to say a few words. All of this progress being accomplished, Luke is still and will always be a much more difficult child to care for than my others. He is a ten year old in diapers. Full time diapers. He can speak a handful of words to get his point across such as “more” “all done” and “juice.” He walks, with assistance, but not for long distances. He becomes extremely agitated with anything new – new people, new environments, new foods, or new videos to name a few 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 usually screams “ALL DONE!” until that new is replaced with something old and familiar which is why taking Luke anywhere is an overwhelming task for all involved.  

Bringing Luke anywhere is an exhausting and time consuming task for the whole family. We do attempt to integrate him into short, family activities, 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 probably be much happier at home, walking outside, eating his lunch in his normal, 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 going in 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 happy 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 to 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. In order to keep him pacified on the car ride home we had to frantically pick up McDonalds and feed 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 bedroom door, and popped in a video which he was entirely too happy to see. That’s our reality with Luke for about 2 hours. Imagine an actual family vacation with him, in our trailer, or worse yet, a hotel room.

My late husband and I tried the hotel room once, and it was enough for us to never go there 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 hard. 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 Veggi Tales. His own mother. When he sees me he breaks out into singing a Veggi Tale song. This stems all the way back to when he was one year 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 attempt 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 to get 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 that 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 specially 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 eight 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 for him 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.

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