Happy New Year
It was serendipity that I heard about The Grounded Cafe at the ADRC a couple months ago. It sounded like an amazing place and I couldn't wait to go there myself to see what it was all about.
My first visit did not disappoint. A friend and I met at The Grounded Cafe at 300 S. Adams St. in Downtown Green Bay for coffee. We encountered the friendliest person at the cafe counter. Well, maybe not as friendly as Jordan was, but close ;)
The Barista was a trainee from East High School. According to the Director, many of the trainees come from the Special Education Department at East High. Susan ordered a mocha and I ordered a latte. James, (not his real name) took our order and with the help of the only paid employee at the Cafe, relayed the information to another trainee who prepared the drinks for us. With much prompting James rang up our drinks on the register, took our money, made change, and thanked us for our order. Never losing the big smile on his face. It truly was a great encounter and one that made our day so much better. After visiting with my friend for a while I asked to speak to the director of the program. She explained that the concept for The Grounded Cafe came from a video she had seen about a similar Coffee Shop in Wilmington, NC called Bitty and Beau's Coffee. Check it out at bittyandbeauscoffee.com
Her idea was to breakdown stereotypes of what it means to be "disabled" through a job skills training program based on the idea that ALL people have the ability to work and succeed, ALL people have value, and ALL success is built on a community that celebrates and includes persons with disabilities.
The Grounded Cafe at the ADRC opened in June 2017. The Trainees currently come primarily from Curative Connections and East High School. The hope is to be able to expand and train more individuals. Right now, there are only enough funds to pay one part-time employee who works with and helps the Baristas learn their jobs. Obviously, this limits the number of hours that the Cafe can be open. Currently the hours are 7am - 1pm Monday thru Friday. The dream is to expand the hours that they are open and to add at least one more part time employee. So far, they have an incredible success rate - 50 percent of the trainees have gotten jobs in our community after finishing their training. This is more than double the national average of persons with a disability who are employed.
In addition to the Great People at the Grounded Cafe, the coffee was pretty darn good too :) All products served are local, including the "ability beans" used to make the coffee.
Oh, and everyone is welcome. All ages. All abilities. Check out their website at groundedcafegb.org and their facebook page at groundedcafegb
As a result of what the Grounded Cafe is doing and how closely it matches our mission, we have decided to donate the 3000 dollars we raised on Giving Tuesday to the job skill training program to specifically benefit the Trainees/Baristas.
We hope 2018 brings much growth to the Grounded Cafe and to all other organizations and people who are doing similar work across the World. Happy New Year Everyone!
What a year 2016 has been!
2016 saw some wonderful and amazing things happen for Living Loud. Looking back on the year it is difficult to imagine and process all that we have accomplished and the steps we have taken to realize our dreams. Dreams and goals for our foundation and also for the people that we are blessed to serve. One of the big highlights came at the end of the year when Living Loud was presented with a $5000 grant from the Green Bay Packers Foundation. You can read the whole article and view the video at the link below.
In 2016 our Helping Hands Bags became a reality and the program is growing rapidly, we were able to help the Cerebral Palsy Center with their Holiday Fundraiser by contributing items so that Clients could make pet toys and treats to give to the local no kill shelter, Happily Ever After, and everyone enjoyed a fun family day at the 3rd Annual Jordan's Walk & Roll.
We can't wait to see the good things that 2017 brings us!
And some pictures from Jordan's Walk & Roll...
The Start of Something Big!
We at Living Loud are really excited to announce the next project we are working on. The wheels are in motion but we need a lot of help from volunteers to make this truly successful.
Our goal at Living Loud is to help those with developmental disabilities find opportunities for meaningful, joyful, and purposeful work and leisure. One of Jordan's favorite jobs at Aspiro involved sorting and packaging.
A few weeks ago I was looking at a picture of Jordan at Aspiro (before he was paralyzed), and he was smiling and helping someone less fortunate than himself. It is one of my favorite pictures of him. And it gave me the following idea which I immediately acted on :)
There are many people in need in Northeast Wisconsin. There are people in Day Service programs (and sheltered workshops and group homes and private homes) who have developmental disabilities and can help these people in need! I have already met with the director at Aspiro and we have plans to have clients assemble "helping hands" kits, if you will. To start, Living Loud will supply Aspiro with contents for the bags that will go to both hospitals and shelters. So as not to become overwhelmed, our first "production line" will be to supply bags to the Emergency Department and Pediatric unit at St. Vincent Hospital. As Alan and I know all too well, occasionally a child will need to be admitted to the hospital unexpectedly. The parents probably have not had time to pack a bag for them or the child. The Child Life Department has given us a list of essentials for parents stuck at the hospital unexpectedly as well as for different ages of children. Living Loud will supply these things to Aspiro who will then have clients who are willing and able package them into bags for different age groups. Parents, Babies, Toddlers, Young Children, Tweens and Teens. Aspiro clients will then deliver the bags to the hospital to be given to whoever needs them.
This is such a great first project of this kind for us as Jordan was both a "worker". as he called himself at Aspiro, and also a recipient of gifts from kind people and organizations while receiving cancer treatment.
If we get enough help from all of you for this to take off, we'd like to make helping hands bags for other area hospitals and also homeless and domestic abuse shelters in the area while involving adolescents and young adults from other agencies as well. This could get BIG!
Later in the week I am going to post a list of items that we need for the bags, mostly little things like toothbrushes and socks, but some bigger things. Blankets are also a big need across many of the recipients. We are welcoming ideas on who/how/where for blankets, the bags (homemade, store bought, etc.) and the items inside. If you have ideas for where we can get these items donated from, please let me know!
With Jordan Always in my Heart,
It takes a village...
Body aches, queasy stomach. I hope it’s nerves. I think it’s nerves. Tomorrow is our 2nd Annual Jordan’s Walk & Roll and I am filled to over flowing with all kinds of emotions, thoughts, and feelings. Excited. Sad. Scared. Grateful. Selfish. Anxious. One right after the other and sometimes on top of each other!
Shortly after Jordan died, when I asked some friends and family if they would help me start a foundation in his memory, I had no idea the commitment I was asking of them. Absolutely no idea. It has turned out to be way more work than I envisioned and it is a lot different than I “dreamed” it would be. Those friends and family that I asked to tag along with me? They have sacrificed time and money to walk with me on this endeavor. I will never be able to thank them enough. That’s where the selfish comes in, that I asked them to start a foundation with me! What was I thinking?! And when co-workers walk up to me and tell me that they are going to try to make it to the Walk I just feel like saying, “NO! don’t give up your Saturday for me!” But then I remember that it’s not about me. It’s about all the young people with developmental disabilities that need more advocates. My friends and family and this community just have a lot more faith in what I am doing than I do.
I think back to when Jordan was young and things were far from perfect with the services he received. I was sooo tired. I was exhausted from the day to day care of a child with significant needs. Most days I was happy if I managed “damage control”. I have more time now. It is definitely not what I would have chosen. I miss Jordan every moment of every day and the grief is still very fresh at times. Like today. But as Sheryl Sandberg so eloquently stated in a very moving facebook post earlier this week, “option A is not available, so let’s just kick the s**t out of option B.”
So that’s what I’m going to do. I’ve always believed that the people who need our help the most are the ones who can’t advocate for themselves. Yes, a lot of adolescents and young adults with disabilities have loving parents and siblings (they don’t all though…), but they are busy, they are tired, they are living day to day and sometimes minute to minute. I want Living Loud to be the help they need to find employment, or leisure time activities, or anything that makes their lives more joyful and purposeful.
So even though I am sad and grieving today, and scared and nervous for the Walk & Roll tomorrow, and incredibly grateful for my family and friends who have stood by me in my craziness, I am going to go out there and “kick the s**t out of option B”!
With Jordan in my heart,
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.
Why didn't you bring Luke?
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 :)
Strength like Samson
The second in our series - "Hope and Dreams". Meet Justin Hunter, Samson, and his family
We adopted our youngest child, Samson, when he was eighteen months old. He was placed in the protective custody of the state due to abuse and neglect. I hope his biological family wasn’t surprised that breaking their child’s leg and arm was a parenting no-no. The state tends to frown on that sort of thing. I’m not sure of the particulars, but I believe that his parent’s avoided prison by signing away their parental rights. The fact that they still have other children still living in their home is another way life tries to make you insane by attempting to make sense of it.
Samson would never have come to us if he weren’t labeled a ‘difficult placement’. While in the hospital recovering from his wounds, the doctors discovered an anomaly in a blood test. Further testing discovered that our little Samson has Duchenne Muscular Dystrophy, a degenerative muscular disorder. This is a fast acting form of muscular dystrophy. Samson will most likely lose his ability to walk by the age of twelve. He will have breathing difficulties and probably heart disease beginning at the age of twenty. The longevity for people with Duchenne’s is about thirty.
We have two other adopted children in our home as well as a foster child. These children have their own issues, but their difficulties are cognitive and emotional, not physical. Bringing this new child home would bring a new set of challenges to our family. The good news is that my wife, Crystal, and I are incredibly stupid, so deciding to bring Samson home was a simple decision to make.
The bottom line was that we don’t hold any of our other children’s past against them, especially (and obviously) since it was out of their control. There was no reason why we couldn’t open our doors to this little boy who needed a home.
Samson is now two and a half years old. He has beautiful bright blue eyes and fine blonde hair that comes down to his shirt collar. He’s everything you would expect a child to be at his age. The fact that he is the youngest out of four kids hasn’t spoiled him one bit, no sir. Of course that is a vile lie. He’s spoiled. He is the most spoiled child in the world. I don’t help matters by calling him, “my precious little dewdrop” or “my angel straight from heaven.” In fact, I just put him in time out for smacking his brother with a wooden train track piece. His newly bruised brother came to his defense saying, “He’s just a baby.”
I was asked to blog about my hopes and dreams for Samson. I understand how my hopes and dreams for my special needs child will differ from those families who have typically developing children. The fact that I have hopes and dreams for my kid shouldn’t be a surprise to anyone, nor will my first dream be a surprise to any parent who has a child with special needs.
I dream for a cure. I believe it can happen in his lifetime.
I am not a fool, and I am not in denial about my son’s diagnosis and what that means for his life. However, advances in medicine, treatment, and robotics that can enhance BOTH his quantity and quality of life are happening at an incredible rate. I hope that one day the degeneration of his muscles can be stopped. I hope that robotics can give him autonomy when he gets older.
My second dream is that he will eventually be able to live on his own. At least for a while.
Having a child with Samson’s disability actually frees me up from a lot of worries I have for my other children. Samson will probably be living at home for the duration of his life. This places him under my protective wing, saving him from all the suffering and harm that this big bad world has in store for everyone who ventures out into it. My other kids will move out, get jobs, have families, make choices (hopefully good ones) and live out their lives how they see fit. Samson will have to do none of these things. Sound great? It sure does for me. Like any parent, I don’t want my children to suffer. Samson will have a different opinion for sure. I am the greatest father any child could want, but living with me every day for the rest of their lives probably sounds like hell on earth to my progeny. My wife probably has the same opinion about living with me, but she is a kind person, and wouldn’t ever say that to my face. My point is that all of us love our parents - none of us wants to live with them when we grow up.
Every person wants to live their own life and make their own choices. Samson will want to be his own man. Crystal and I will do whatever it takes to make that possible. Whether it is possible will remains to be seen.
This might sound a little odd, but my last big dream for him is that he eventually gets a girlfriend.
I’m worried that people will feel sorry for him and not see the person beyond the disability. I hope that someone somewhere will love him for him. Maybe I should get him a $500,000 life insurance policy. The babes will come a runnin’. I’m kidding…sort of.
The bottom line is that I hope his disability doesn’t negate love. I think this speaks for every parent of a child with special needs. We hope that people can see beyond the disability to the person. I want Samson to have the opportunities that many of us take for granted. I want him to be able to make decisions for his own life. There’s a lot about what I want for him here, but it’s really about what he wants. I dream that one day he will eventually get to make that choice.
I promised you I would be introducing you to some incredible families in the coming weeks. Today I'd like you to meet Beau. Beau is 12 years old and loves music and puppies. His mom Michele wrote this piece for us.
My son Beau was born 9 weeks premature, he had a heart defect and was a very sick little baby. The doctors didn't think he would make it through the night. But Beau was a fighter. A few days after he was born we were told he had Down Syndrome. No, actually we weren't told he had Down Syndrome, we were told he had Trisomy 21. Trisomy 21 didn't sound so bad, maybe an operation and he'd be all better. Then the doctor told us it was Down Syndrome. Still, I didn't think that was so bad. I mean a few hours earlier we were happy that he hadn't died, so this didn't seem like that big of a deal. Beau was a very sick baby and the weeks in the NICU dragged on with progress and then setbacks. Not to mention that when you spend so much time at the hospital you start to get involved with politics of the staff and see the difference in care from one doctor to another and how one doctor will start one course and another will change it. It was an exhausting, emotional roller coaster. I am thankful that Beau was our first child because I can not imagine those weeks going back and forth from the NICU while also having another child. Then came the time for Beau to come home. I did not want to bring him home. I was fine just visiting him. The thought of being responsible for caring for this sick baby terrified me. He came home with oxygen and a heart monitor and I swear I didn't sleep for a week, we were so afraid that he was going to die. We just stared at him. I remember our first visit with the pediatrician after he came home. He said "You two look like crap, are you sleeping at all?" Of course we weren't, you just sent us home with a sick baby that I have seen stop breathing on more than one occasion. Hard to relax when all you can do is worry. He told us to go home and sleep, Beau would be fine. So we did, and he was right, Beau was fine.
Open heart surgery at 4 months old, seizures that made him lose every milestone he had gained, severe reflux that made leaving the house impossible because he threw up all the time, and not just a little spit up, projectile vomit across the room. I'll never forget one time we decide to go out to eat and there was a wait. The lobby was full of high school kids all dressed up for homecoming. Whenever Beau would throw up he gave us a warning cough and then it was time to batten down the hatches because he was going to blow. So we were sitting there and I hear the warning cough. My husband and I look at each other in terror and we both leap to run him outside, leaving a trail of puke behind us. That cute girl next to us has no idea how close she came to having her dress baptized by Beau.
Beau is twelve now and because of his complications from prematurity he has many developmental delays. He is g-tube fed, non-verbal, and unable to do any tasks for himself. He has had over 10 surgeries and during his first year of life he had nearly 50 doctor appointments and therapy 3 times a week. Despite all of this, Beau almost always has a smile on his face. He does say a few words, "puppy" "TV on" "puppy DVD" "no" and "baby Beau". His first words in the morning are "TV on" and he will pat your leg and say it a few times just in case you missed it. If you sit long enough eventually he will come over and crawl into your lap. He loves to snuggle. He loves music and his already big smile will swell as he rocks to the music.
When I was asked to write this piece about my son with special needs I drew a blank. What are my hopes, my dreams, my fears for my child's future? Umm, I don't know. I don't even know what to make for dinner. So I went to the internet for inspiration, surely that would give me a launching off point. I found this quote.
"Perseverance is not a long race. It is many short races one after another." - W. Elliot
I think this sums it up for me. Maybe I am a coward, maybe I am too busy, maybe I am too disorganized to think about the future. I try to take it one day at a time. One short race after another. That isn't really true, I don't think about it I just do it, like walking. I just do it. I don't worry about it, I don't dwell on it, I just do it. I change poopie diapers on a 12 year old and g-tube feed him while the rest of the family is eating. I dress him, I bath him, I change him again because a 12 year old pees a lot and a diaper can't hold it all in so we are perpetually changing clothes. I never really think about how unusual this is until he isn't around and then I realize how much work and time it takes. We also have a 7 year old son who is a typical as typical comes. And as much work as Beau is, Lucas is 10 times harder. He talks back and doesn't listen and challenges me on everything. In many ways he is like an only child because Beau doesn't play with toys like he does so he doesn't have to share. Beau doesn't eat cookies so we don't have the "his cookie is bigger than mine" fight. Beau doesn't ask for anything, except for puppy DVD and TV on. He just hangs out being Beau.
I'll be honest. I don't want to dwell. I don't want to know about the big fire at the end of the road or the cliff that is coming up. I guess it's the same philosophy that makes me say that I'll start my diet on Monday, I will put away more money for retirement later and I'll floss my teeth. Terrible, I know.
So what do I want for Beau? I want him to be happy, which I think he is. As I write this he is sitting next to me giggling. He is always happy. I know that is a stereotype of people with Down Syndrome but in his case it's true. So when I think about it, that's what I want not just for Beau, but for myself. Just be happy with what I have. If the world was the type of place where everyone had the simple joy that he has, wouldn't it be great?
Enjoy the moment, don't dwell on the past.
What I also want for Beau, especially if I am not here to care for him, is for someone to appreciate and love him the way we do. To see the joy in the simplicity of him and not be scared of his needs. He is an absolute joy. I'll be honest in that I have wished on more than one occasion that he didn't need my help for everything, that he was more "typical". I feel guilty for those feelings because I honestly adore him. I can't imagine my life without him. Being his mom makes me a better person. So for now, I will do everything I can to help him live up to his potential and just enjoy him for the perfect angel that he is.
We were supposed to die first...
Moms and Dads are supposed to die before their children. It’s just the way it’s supposed to be. It’s the natural order of things.
Of course I had fleeting thoughts of my children contracting terrible diseases or being in a horrible accident, but it’s someplace you don’t want your mind to go so you quickly dismiss the idea that it could ever happen to you. And you plan for the future.
We knew from a fairly early age that Jordan’s autism would prevent him from ever living independently. Alan and I drew up a will before either of us turned 30. Crazy, right? But Jordan’s needs weren’t the typical needs of a child and we needed to be confident that if something happened to Alan and I he would be provided for. We named a guardian who was willing to move into our home so that Jordan would not have to experience disruptive changes in his daily routines. Losing his parents would provide enough stress in his life. We decided to write him out of our will. This was a difficult decision but if our assets were split three ways among our boys, Jordan would not qualify for any help from the state. We trusted his brothers then, and have never doubted, that they would see to his future care and needs.
As Jordan got closer to finishing school, we had more decisions to make. When he turned 18 we chose to become his legal guardians. It was really weird as it almost felt like we were adopting him all over again… Among other parts of that process, we needed to meet with a court appointed lawyer to make sure it was in Jordan’s best interest for us to take guardianship. I’ll never forget holding my breath as the lawyer asked Jordan if he wanted to live with his mom and dad. Anyone who knows Jordan knows that at this point he could have said anything! He said yes J. We had to go before a judge in court and we also had to have a physician declare him incompetent to make his own legal and medical decisions. That was hard but necessary. That doesn’t mean we didn’t include him in on decisions that we felt he should have a say in, we always tried to let him have choices. A few years later this would be more important than we ever imagined. Without our guardianship Jordan would have been considered an adult and we would not have had access to his medical files or care. His cancer diagnosis was difficult enough without having to deal with legal issues. So glad we were proactive on that!
So with the guardianship process complete, and Jordan’s graduation impending, we set our sights on what Jordan’s future would look like. Jordan often talked about moving into an apartment with his friends and we hoped to make that happen somehow. It would not be easy but we were confident there would be a way to make it work out. Alan and I made a timeline for this to happen. Tyler would graduate in 2006 and go off to college, Jordan would graduate the next year and go to a local adult day services program to work and continue to live at home. Alex would graduate in 2009 and go off to college and at that time we thought it would be a good time to also transition Jordan into his own future home. Alan and I would be empty nesters ready for the next phase of our lives and our boys would be happy and healthy starting their own lives away from home.
But, Mousie, thou art not alone
In proving foresight may be vain:
The best laid schemes of mice an men
often go awry
An leave us naught but grief an' pain
For promised joy - Robert Burns "To A Mouse"
The best laid plans of mice and men… Our plans were not to be. Before Jordan graduated we were informed that housing would not be available for Jordan for a very long time, if at all, unless we could provide the home and the 24/7 staff. There may be some people who can provide a house for their adult child and also pay for all the utilities and upkeep, but we are not one of them. And quality staff to care for him is not cheap either.
So now we are not going to be empty nesters. We are going to have our son living with us for a long time. So work schedules need to be adjusted, plans for things that just involve Alan and I need to be put on hold, and we need to picture our future in a different light.
We adjust and life is going along just fine. Jordan is happy at his day program. He loves getting a paycheck and teasing his brothers about having a job. Alan and I have made accommodations and are doing ok with our thoughts for the future.
And then our nightmare of all nightmares – Jordan develops a rare, terminal cancer that leaves him paralyzed for 3 ½ years before his death. He died June 24, 2012. He had just turned 26 years old. And our house is very empty.
So was all of our planning in vain? I don’t think so. We learned a lot. We learned that there are very few options for people with developmental disabilities, especially autism, when it comes to employment, housing, recreation, and basically every need they might have!
I felt an overwhelming need to honor Jordan’s legacy, his Life, and decided that the best way to do that was to make sure the opportunities for a fulfilling, happy, productive life were available to others. Others like Jordan. Living Loud, Inc. – The Jordan Hischke Foundation was born of this desire.
In the coming weeks and months I plan to post guest blogs on this site written by other moms, dads, siblings, and professionals about what they think the future for those with developmental disabilities looks like now, how it should look, what their dreams are and what the reality is. I hope you will check back often to read their stories and share in a part of their lives.
With Jordan always in my heart,