I met Kent's mom Linda "many, many, many" years ago when we were both heavily involved with the Autism Society of Wisconsin. Unlike the past three blog posts which were about younger people with disabilities, this one gives us insight into the education and transition of someone a bit older. Here is Kent's story.
Kent at 28
Reflections of an Education
Kent Breuer was raised with the spirit of community inclusion since he entered school with a diagnosis of Autism back in 1990. From 1st grade on he was in a regular classroom in his neighborhood school with his age peers.
Kent had the most difficult time in the 2nd grade. Hitting, kicking, screaming, meltdowns, and pull outs to a quiet area had escalated to almost daily occurrences. His aides had to wear arm and shin guards for their own protection. Our IEP meetings were breeding grounds for panic attacks. The daily take home progress journal became the journal of nightmares. School was at a loss for things to try to get this child under control. Teachers questioned the value of him being in their class. There seemed to be more struggles in school than at home so we blamed the school for not addressing the needs of our child.
If there was anytime I thought about pulling my son out of school, it was then. Then, as they say, a small miracle happened. Through connections with our local Autism Society chapter, I heard of an Autism consultant who was willing to come to our school and observe my son’s day. I’ll never forget the first thing he said to my husband and I after meeting our son. “You have an extremely intelligent boy there.” Positive
comments from medical and educational staff were extremely rare back then so I was blown away.
The Autism consultant went on to say a large part of my son’s difficulty in school was twofold. One, there was a lack in understanding of what autism was and how it affects the body. Two, he felt my son was responding at school out of fear and anger because he was being talked down to and treated as if he was broken. The consultant called me in to observe a typical school day. My son displayed a total aggressive meltdown with 2 and sometimes 3 staff people used to hold him down until he was so physically exhausted he went limp. I remember crying and feeling helpless to intervene. The consultant later asked me if I saw what happened from the point of escalation to meltdown. He was able to point out every step of what caused my son to go deeper and deeper until the point of no return. There was a feeling of dread when I heard the consultant say, “If we don’t do something about this now, your child may be headed for an institution.”
He spent the next week working with staff at school and counseling my husband and I on techniques to work through autism rages. I was able to attend school to be Kent’s aide for a week, using the style and tips the consultant mapped out to facilitate information to and from my son, gaining his trust, demonstrating how to be his interpreter for others, working through fears slowly replacing bad experiences with positive ones. His advice for the staff….treat my son like the bright and gifted human being he is and they will see a remarkable difference.
My son and his school turned a corner in 3rd grade that changed his life. My son was given the opportunity to be in the selection process for a new aide. Several school staff members continued on with training in the area of Autism. I became more involved in the school, my community, my local chapter.. learning more about advocacy, interventions, and therapies through trainings and conferences. My husband and I worked to offer our son a variety of experiences in a variety of settings with a variety of people.
Kent’s school years are a series of flashbacks or as he would say now, “Kodak moments.” Such as singing with his classmates during Christmas concerts, dancing in the chorus in a junior high school play, being a member of the high school swim team, and achieving the Eagle rank in Boy Scouts after earning 25 merit badges and completing a service project in his community for Special Olympics.
During the time of school transition (16-21), Kent was provided the unique opportunity to try out different fields of work in the community for a portion of his school day assisted by his aide who acted somewhat as a job coach. Kent experienced such jobs as working with horses, data entry, stocking shelves, shredding documents for a legal firm and making boxes for the shipping department of a local business. The last work opportunity evolved into a part time job in Burlington. He’s been there for 8 years and remains one of their best employees for that job.
Sometimes I think about what would really have happened if we didn’t get help and a new direction back in the 2nd grade. What if that autism consultant hadn’t come into our lives and changed the course of our son’s education? What if we had given up on working with the schools to improve learning experiences for students with autism? How different would my son’s life be after spending his formative years in an institution? I wonder sometimes about the path not taken.
School was a vital part of Kent’s development and chances for learning opportunities. He still has autism, very much impacting his communication, sensory system, and social interactions. He still is learning and growing in understanding, as am I, as is our family, and as is everyone who is lucky enough to know and work with him in our community.
I can’t speak for other families, but I know my child changed dramatically for the better when attitudes changed from the people around him to assume intelligence and not treat him as if he was a damaged human. There is a saying that goes something like… “parents who feel lucky in having their children, have children who are lucky to have those parents”. I think the same holds true for schools and communities. Working to change attitudes towards people with autism and other disabilities is one of the best things we can do for our children.
Our guest Blogger today is someone I "met" online after Jordan's diagnosis of brain cancer. Like Jordan, Jessica's 1st husband had glioblastoma multiforme; we quickly discovered that we had much more in common than loved ones with brain cancer. We were moms of two very special boys with extraordinary needs. Meet Jessica Ronne...
“Why didn’t you bring Luke?”
We 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 in his normal 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 clothes, scrubbed the entire bench seat in the van (which still has remnants of ketchup and mustard forever etched into the fabric) and brought him to his room, closed his bed, 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 children 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 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 that 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.
You can read more about Jess's amazing family at the following link, just published yesterday! Also check out her blog :)