Thank you to the students in the Marketing 309 class at UW-La Crosse. Students assisted with developing marketing strategies for our exciting new initiative, the Chileda Development and Learning Center. Their ideas will be instrumental as we move forward with the Center in 2019!
Imagine crying yourself to sleep at night and leaving your child in the hands of strangers. How would you feel?
This powerful story from a mother takes you on an emotional journey of a family’s love and desperation, telling how Chileda has been able to offer hope and love to not only their little boy, but also the entire family.
I want to express to you the saving grace you have been for our son, Sean, and our family. Sean entered your facility on September 12, 2017 – a day forever etched in my memory! Hands down – one of the hardest days of my life.
We tried countless avenues to improve Sean’s Autism Spectrum Disorder (ASD). Sean is mostly non-verbal and as time went on, he became more and more aggressive and violent. Sean would bang his head repeatedly on walls, doors, windows, objects, etc. many times each day. We had holes in most of the inside doors in our home, several holes in the sheetrock walls, and he even put his head through a glass clock on our wall. At least once a day, Sean would attack a member of the family. We had countless black eyes, scratched corneas, bruises, bite marks, etc. We looked battered, which we were, but who would have thought it would be from our own 7-year-old son – or brother?
We employed many, many people and organizations to help Sean, and help us help Sean. I kept a spreadsheet listing all the doctors, psychologists, psychiatrists, therapists, teachers, etc. that had been involved with treating Sean. It became more and more apparent that something had to change. We could not continue on this path of destruction. We could no longer keep our daughter out of harm’s way, and she was terrified of her brother. She spent most of her time in her bedroom with the door locked. Our worst fear, to be separated from Sean, was seemingly to be the only way to implement behavioral change – according to the many professionals advising us.
I cried my eyes out for hours, trying to imagine Sean not living with us. How could we possibly “drop” Sean off somewhere and leave him? But that’s exactly what we did. We didn’t want to do it, but when our in-home staff refused to come to our home because of Sean’s aggression and violence, we felt we had no other choice. What was best for Sean and us in the long run?
From the first time I called Chileda and spoke to Terry (the receptionist), I felt a little more at ease. She was so kind and listened to me, answered my questions, and waited patiently as I tried to catch my breath through my sobbing tears.
The night before we were to bring Sean to Chileda, I didn’t sleep at all. I prayed that we were making the right decision and that the people we were entrusting to take care of our son were, in fact, “good” people. The staff at Chileda were waiting for us upon arrival and were very sensitive to the situation and our broken hearts. We toured the facility and found Sean’s bedroom and placed his clothes in the dresser drawers and played outside with him on their playground equipment, and left about an hour later. I was hoping I would die on the way home from a broken heart so as to no longer feel the pain. I feared he wouldn’t eat, or be able to sleep.
However, when we visited him for the first time two weeks later, he was happy to see us. He didn’t look the same, but he didn’t look bad. He wasn’t upset when we left. While I still cried all the way home, I was glad that he was still alive. Slowly the guilt over our decision gave way to encouragement that the staff at Chileda was better suited to take care of Sean, and teach him new skills to reduce his aggression and violence. It is very difficult to come to that realization as a parent – i.e., that someone ELSE is more qualified to take care of your child.
Sean has now been at Chileda for a little over 14 months. He is 9 years old. We visit him often. While the visits will never be like it was at home, we walk away knowing he is well-cared for. Quarterly meetings with the staff indicate he is improving and reaching goals. I am no longer completely anxious while being around Sean. I don’t fear that he is going to hurt me. For some time, I would ask that a Chileda staff member stay with Sean and I in case I “needed’ their help. I no longer feel this is necessary.
Sean is comfortable at Chileda. He knows the routine and he knows the staff. While the staff in his house work with him on life-skills, his teacher and aides in the classroom work with him on educational skills, and they all work with him on developing skills to better deal with his frustrations and redirecting inappropriate behavior.
All the staff at Chileda are exceptional. They ALL know Sean. We don’t know all of the staff, but they know, and LOVE, Sean. They see the funny things Sean does and his little tricks. He wants their love and hugs, and they are happy to give them to him. What more could we ask for right now?
Friends of Chileda, I often refer to families like the one in this story as the “invisible people.” Kim’s family, like many families who have children with severe ASD challenges, live behind closed doors wishing and praying for someone to help. Many lack support systems to help and many live in isolation because all of their time and energy is spent trying to care for their child.
Chileda serves children and families who are often desperate for help. We provide hope when there seems to be none. We provide answers when there seem to be none. We provide support when there has been little.
In 2019, we would like to take a next step in our care for each family, improving each family’s experience when they visit our campus. Our current family visitation area lacks in size and hospitality. As you read Kim’s story you can imagine how important each visit can be for a family. We are planning a $90,000 renovation project to improve our building to better meet the needs of our families and create a safer and more hospitable area. This Christmas, would you please consider a gift to help us better serve our families?
We want to create the best possible environment for families like Kim’s and do our best to create a home away from home for each child.
Derek Cortez, PhD
Submitted by Kasi Haglund, Executive Director at Adapta
I can honestly say there isn’t a week that goes by that I don’t think about my time at Chileda. It changed me both professionally and personally. I went on to get a degree in Social Work and I am now the Executive Director of a non-profit in Rochester, MN.
When training others I often use a scenario from my last day at Chileda. I frequently worked with a girl that was non-verbal and could be physically assaultive when frustrated. On my last day of work the lead staff was saying something about it being my last day… the young lady reached her arms up like she was going to hit me. I put my arms up by my head to block what ended up being an enormous HUG! She knew it was my last day. The lead staff and I both were teary eyed. To this day I get choked up talking about it. She forever changed me for the better.
That night after my shift I called my mom. I was crying so hard she thought something terrible had happened. I left a piece of my heart at Chileda that day.
The children at Chileda taught me more in a short time than all of my schooling ever could. I feel honored to have them as a part of my story.
Thanks for all you do!_________________________________________________________________________________________
Would you like to share your Chileda story? Please email Tina Majinski at firstname.lastname@example.org.
Submitted by Toby Wendtland, Scheduler and Recruiter
Chileda participated in the Nutbush City Limits volleyball league this fall. Though staff often had to brave the cold sand with warm socks on, they had a great time and did their best to set the competition. It was a great teambuilding experience and a chance to use all their wonderful Recreational skills outside of Chileda.
Submitted by Terri Gowey, Chief Operating Officer
Going into the community with a child with behavioral challenges can be anxiety producing. Here are some helpful tips to assist you when going into the community:
Be aware of the environment in which you are going and potential sensory aversions.
- Bring items, such as sound muffling headphones, sun glasses, their favorite hat, etc., that will help your child if they may experience sensory overload
- Pick a time when the environment is less likely to be crowded.
- Prior to visits, become familiar with where exits and bathrooms are.
Be aware of environmental risks such as water that is close by, a busy street, a preferred item your child might dart toward.
Review expectations with your child prior to going into the community.
- If your child is a visual learner, using visuals to go over those expectations and provide visual cues while in the community are helpful.
Have preferred items or small rewards (reinforcers) available for community activities.
- Provide behavior specific verbal praise when your child is doing what is expected, for example, “You are doing such a nice job pushing the shopping cart.”
Plan for behavioral challenges.
- You may need to leave a cart of groceries or other items behind to exit the store quickly.
If it is a new or less preferred community activity, it may be helpful to slowly introduce your child to the community activity.
- Practice at home by simulating the environment you will be going to.
- Take pictures of a child engaging in the community activity and make a booklet to go over with your child beforehand.
- Start by driving by the location, another day go up to the door and look around, the next day go into the office, etc.
- This has been helpful for doctor or dentist visits, it is best to communicate with the provider ahead of time to come up with a plan that works for you, your child, and the practitioner.
Brought to you by Alicia Zielke, COTA
Playdoh is a great “tool” for so many reasons. The playdoh itself has a “gooey” and “sticky” texture, and in this case a strong pumpkin smell, which is fun for kids to explore (especially students who are sensory seeking).
When playing with the playdoh, kids are able to learn and expand on many skills. We can “push” or “squish” the playdoh together and roll the playdoh into snakes providing sensory input to the joints while also strengthening the muscles needed for fine motor activities. We can use the playdoh to form letters, numbers and shapes, turning learning into play. Lastly, this fun pumpkin playdoh can serve as an opportunity to engage in imaginative play and can help our students expand on their creativity!
Recipe: 1 can of pumpkin, then gradually add cornstarch to reach your desired consistency
Submitted by Trista Zimmerman, Leisure Education Teacher
A new school year brings a new group of students on the Chileda Student Council! Our group meets bi-weekly to discuss different happenings around campus. Some of the major issues already tackled have been the student handbook as well as discussions about the school menu. Future endeavors include planning outings, fundraising and other campus activities. Every student will have a chance to run for office and each student will have a special job on Student Council after the voting concludes.
Pictured: Student diligently working on his campaign speech.
Submitted by Toby Wendtland, Recruiter
Wait, what is Chileda? We polled 100 people who had never heard of Chileda and the most popular answer was: A Mexican Restaurant! Well, that’s not quite right. Chileda was founded in 1973 with the idea that every child can reach their full potential regardless of cognitive or behavioral challenges. As the first significant papers were being published on autism, Chileda was already helping families find unique and tailored approaches to each individual child they served. 45 years later, we continue to innovate at our integrated school and residential campus located in La Crosse, Wisconsin. So why work at Chileda?
Set aside the awesome benefits we have, forget about the generous insurance package, the 401(k) match, profit sharing and amazing paid time off, and focus on the opportunity in front of you: We want you to help us change lives. As you get to know our students, there will be no quitting on them. What if I told you there was a job out there with great pay, great benefits, even better opportunities for advancement, and a job you’ll love 95% of the time? Doesn’t that sound tempting, even sound like a career opportunity? Nothing prepares you for Chileda, except Chileda. There are opportunities for rock stars to shine, to go on tour, and even go platinum. We love to train staff; we’re producing rock stars every day. Join us and we’ll show you why job satisfaction makes all the difference.
Submitted by Derek Cortez, CEO of Chileda
This speech was given on 10/4/18 in support of the All Abilities Trane Park
Fellow parents and grandparents,
Have you ever reflected on the many choices you have for your children and grandchildren to experience community? Have you ever reflected on the many choices you have for your children and grandchildren in regards to team sports and other physical opportunities? Probably not. Why would you, when this is most likely an unnecessary exercise for your family? For most of us in this room we have the luxury of choosing amongst many choices of places to go and activities to engage in with our kids and grandkids.
But suppose you had no choice or very few choices. Suppose the physical and cognitive challenges of your child or grandchild seriously limited the places they could go…places where most other children could go, but yours could not. How would you feel then as a parent or grandparent?
Fellow parents and grandparents,
The world of limited choices is the world the children of Chileda live in. My name is Derek Cortez and I am the CEO of Chileda. Chileda is an organization whose mission is to improve the quality of life for children/adolescents with severe autism and other cognitive challenges. We have been a part of this community for 45 years. Our residential and day school program serves on average 60-70 children and employs more than 200 people. Our families come mostly from Wisconsin and Minnesota, but do come from as far away places as Alaska.
One of the questions we often hear from our parents when they visit their children is where can they take their child in the community where they can be safe, welcomed, and have fun? It isn’t easy to find such a place, because few places exist that can accommodate our children.
The Trane Park is one such place that will provide an option for our families. In a world with limited choices, the Trane Park provides them with a place where a kid can be a kid, regardless of physical and cognitive challenges.
Tonight I am here to represent those families who could not be here to speak on behalf of their child. I am here to speak on the behalf of the invisible, those who too often spend much of their lives behind closed doors so you seldom see them.
Fellow parents and grandparents, I would ask you to support this noble cause of the Trane Project.
The Trane Project will demonstrate yet again that we are a city that shows we don’t aim to meet only the needs of the many, but also the needs of the few; and not only those with the loudest voices, but also those without a voice…the needs of the invisible. Thank you for consideration of our request to support this park.