In May of last year, I got remarried to my current wife (Faith), having been divorced from my first wife - my son’s mom, several years ago. Following the divorce, I became a single parent to my disabled son Chris. While I doubted that new love could find me, I met...
In the first few months of 2012, I found myself unemployed after experiencing job loss from the private elementary school where I was working. To fill the gap until I found another teaching position, I took a job as a personal care assistant for a young man with...
John Fela writes about a time when the Lord showed up in his life, to remind him that he takes care of him, in all of life’s circumstances.
In today’s post, John Felageller shares the story of his son’s service dog Damon, and how what John initially viewed extra work for him and his family turned out to be a true gift for belonging and support.
My son had received his diploma. I had shown up for it, and for him. It was graduation day. I couldn’t be prouder.
This was not like any other special event during the school year; this was different, with balloons dangling on strings, hands cradling bouquets of flowers, and an air of excitement that was not like any other day. This was graduation day, for my son’s 8th-grade class.
When schools around the country returned to their normal schedules and in-person learning this fall, the normalcy that existed prior to the COVID pandemic did not return with it. But we are reminded in these times and experiences that he love of God still comes through, despite new barriers.
My son recently had an experience that was new for him, but also new for me as a parent. He went to an overnight camp for three weeks. Truthfully, this was something I would have never considered for my son, mostly because he is severely autistic. He wasn’t the only one who grew from this experience. Here are three things I learned.
John Felageller share a few ideas and inspiration on how you can travel with your special needs family, and also shares some recent successes with his son at camp!
John Felageller recounts his recent experience with one of the biggest challenges facing families of disability: the ability to find and become part of a welcoming church community.
One year after the pandemic began, there is still a great amount of fear and uncertainty involved in our daily lives. Reflecting on 2020, there were so many days and weeks that led me feel completely abandoned by God. So having ‘faith’ in God may seem like shallow words, when one is dealing with intense crisis and pain. But one thing that has helped me have faith is to reflect on those times when God showed up, even when I didn’t expect Him to. I had such an experience recently, where I found myself in a familiar place, having my faith tested very much as it has been in the past.
During the recent Christmas season, as I pondered the state of the world and all of the trauma that I went through in 2020, a message from a messianic rabbi about the Magnificat led me to ask a truly hard question similar to what Mary could have also asked: do I believe the God who carried me through so many difficulties and challenges in the past will carry me through new ones as well?
Last November I had the pleasure of attending the one-man show of a friend, based on the life of Father Damien, who served the leper colony on Molokai, Hawaii. One week later, the day after Thanksgiving, the final words from the play took on new meaning for me, in a way I never saw coming.
In October 2014, I was in the middle of a short period of personal chaos that had created a fair sense of anxiety and fear in me: job loss; my mother experienced an accident that required surgery; my mother-in-law required hospitalization as well. I felt confused and insecure, but did my best to remember I was serving an important purpose in my family’s life. And at Halloween, the purpose to my time at home was finally realized.
Like many special needs parents, John Felageller has experienced times when medical or education professionals have treated his perspective on his son with special needs as less important and valuable than theirs. In this third post in his series, John addresses what may be the most difficult experience of all for special needs families: when you have struggles working with children’s or special needs ministries. John offers valuable takeaways, including recognizing when you need to give back and serve others who are most in need.
Last month I published a blog regarding strategies for dealing with the COVID-19 quarantine, specifically as a single special needs parent. This month, I would like to focus on one of these strategies in particular, and this is the last of the “Three C’s,” Compassion.
I had just dropped off my son after having him for the weekend, as it was my time with him, according to the parenting agreement with my ex-wife. I no sooner put the car in reverse than I heard the declaration on the radio during a COVID-19 briefing that all restaurants, cafes and bars were to be closed indefinitely. Children like mine don’t just “do better” with routines and structure, they require it. I want to share some ideas and perspective on this time as a new single parent of an autistic child and how I, and more importantly, we as a family still, are coping.
What kind of faith do you have right now, is it sustaining faith, or mustard seed faith? A guest pastor challenged us on the quality of our faith and the nature of our prayers. He pointed out that we may ask God for what we need, but not our deepest desires. He then put forth this question, “Do your prayers make God sweat?”
The emotions I felt at this point were profound, as this wasn’t just another service on another Christmas; this was me and my son, once again in a new church community, strangers in a familiar yet unfamiliar place, trying to find our place. What helped me get through it, what allowed me to get to a place of hope for this new church and my son’s place in it?
Large holiday celebrations like Easter and Christmas can present some unique circumstances to families like ours. Something that has always been tough to swallow in the weeks leading up to Christmas has to do with how our son was included in student performances.
Whether at the doctor’s office, with our child’s therapy team, in the classroom for an IEP meeting, many times we are just not considered experts on our children. We are relegated to being just a bystander while the real “experts” make proclamations over our children. While they may be truthful many times, they still don’t define our children totally. It is in those moments that we must step in and be the voice in the gap between the understanding of the experts and the knowing of our hearts, and speak out the value of our kids that only we can communicate as parents.
I begrudgingly took out my Bible, half-reading the words of Jesus, when He reminded us not to “store up treasures on earth,” but rather focus on Heaven, and the glory that awaited us in the afterlife. Did I really believe those words? Or was it just too easy to forget those words when I faced the threat of a material loss, and allowed myself to become someone else? What do I really value and treasure in this life?
I was brought back to the realization that families like mine have all the time. My friend really knows my family and our situation, but he just doesn’t know what family retreat means to us. How could I even begin to explain what really goes on there? I just relegated it to the usual experience of “he doesn’t get it,” but I really wish I could’ve had the “it’s not like that” speech with him.
My autistic non-verbal son has picked up some interesting habits recently. My son, who I always assumed was demonstrating illogical and repetitive behaviors due to his autism, was possibly copying what I did and trying to do the same things. He was legitimately observing my actions and trying to emulate them in the best ways he possibly could. He was watching me.
It seemed to me that the experience of learning how to hitch and tow a trailer was a lot like my journey as a special needs parent, and in reality it was the perfect analogy for our lives. So here are some takeaways from my time in relative isolation driving to Ontario to have our trailer hitch installed. I hope that some of these may ring true for you as well.
I stood up slowly, and took in that space one last time, grabbed a couple more pictures and said goodbye to therapists I would see many more times, and other therapists and teachers I’d never see again. I waited as my wife finished some conversations. One last quick time, I reviewed the highlight reel in my head of all these meetings here, but more specifically, the hopes and dreams I brought into this room.
I had been pondering the High Priestly Prayer since our son was diagnosed with a chiari malformation. I realized that Jesus not only surrendered His physical body so that we might be saved, but He also offered up His glory, His spiritual being for us as well. He literally poured out everything He had, physically, emotionally and spiritually for His children. I shared with my wife how I prayed a similar prayer over our son, that I would surrender everything, every grace, blessing and favor given to me by God so that my son might be healed. It hit me that this is exactly what we celebrate at Easter, a miracle of sacrifice so profound that we can only scratch the surface of how deep it goes. Sunday was coming, and this year we would quite possibly have an Easter miracle just a few days early.
We have never forgotten that time when we felt undermined, as parents who couldn’t advocate for their child. You are, in fact, quite the expert on your child. When you face the challenges from educators and others with degrees, certifications, or other credentials, remember that you are more than just a parent, you are everything to your child.
I think this is the razor thin line that we as special-needs parents walk every day, the balance between engaging and resting, between knowing when you need to be involved and when you can step back.
John shares the types of love he hopes his son has the opportunity to experience and the sweet story of his time with “Honey.”
John shares resolutions especially for special-needs parents, to make 2019 a year of peace and growth!
He may not ever be able to do what all of his classmates or friends and church can do, he may never recite a poem or master a dance step, and he may only ever be able to press a button on a screen to be included, but there is no doubt for me that God’s will IS to include him.
John is an only child, married to an only child, and raising an only child. So who will celebrate Christmas with his son when he is gone? “So where my child may not have extended family to depend on, we create relationships with people who are most important to us, starting with our church family.”
John describes a powerful movie scene that reminds him how much Jesus cared for people with disabilities.
My hope is that not only will I learn to trust my shepherd, but that I may embrace this season for what it is—a unique opportunity to see God at work in our lives and be excited for the gifts this time will bring.
John shares the challenges and victories his family experienced as they went camping together!
What about you? Do you have a prayer list that makes God sweat? One that makes him roll up His sleeves and get ready to do the divine work necessary to answer your prayers?
What do I really value and treasure in this life, or the next for that matter, and how was I being an example for my family in that moment of frustration?
My family and I had a profound gift to bring to our new church community, one that, until now, was not available to anyone.