Recently I had the honor and privilege to be a guest on the Feed Your Spirit Podcast with Jill Dobrowansky (follow her on Instagram). We were introduced by a mutual friend, Lauren Condoleon who was also a guest blogger here a couple of months ago! I had the opportunity to share my heart behind why this blog means so much to me and how it came to be. Check it out, I hope it’ll be an encouragement.
Over the last month or so, there has been this phrase thrown around which I am sure you have heard, “the new normal.” Everyone is talking about a “new normal” after quarantine; I have seen two different reactions to this idea. People are either excited or fearful at the idea of a “new normal”. There is uncertainty about what the future holds and, for the most part, it is accompanied by concern or fear. As you may know, if you have read my other posts, I value consistency and security, I don’t believe I am alone there. Consistency is also essential for my children who have autism. The pandemic plus moving states has been hard on my three kids, however, I do believe that when we get outside of our normal routine or there is an end to a season, there is an opportunity that comes with it.
We have an opportunity at this time to reevaluate our normal. It is easy to reminisce about times before quarantine and it gives us so many things to be grateful for. However, what about the portions that weren’t so wonderful? Maybe, you actually didn’t enjoy the job you have been laid off from or furloughed. Extra time with your kids might have revealed some areas you would like to adjust, so you can make the most with the time you have with your family. Now is the time to reevaluate and make changes. There is an opportunity to dream up what you would like your new normal to look like and to start taking action steps now. When your routine has been turned upside down, you get to decide what your new schedule will look like. If you want to change your diet and add in exercise, now’s the time to do it. If you’re considering a change in career, maybe now’s the time to seriously consider it. Maybe you have been wanting to say no to some things because you overfilled your plate, this is the perfect time to change that. Whatever it may be, while everything is in limbo, now is the time to make major changes.
There have been season changes in my life that I have just let happen and then there are the ones I have taken charge of. The seasons I have taken charge of have been seasons where I have thrived and felt the most growth in. These are the seasons where my relationship with God has grown and my marriage has grown. The seasons where I have either not had the energy to embrace or have just been frozen in fear, they have not been my most flourishing or rewarding seasons. In fact, those seasons have been some of my most painful growth seasons. Those seasons are where I have learned some lessons the hard way.
For those of us who know and love God, we know that our future is in God’s hand, we trust Him. However, we all have seasons where we have had to walk out some heartbreaking experiences. In order to go where God is taking us, we have had to walk through some deep valleys, not knowing when the end is coming. Trusting God has not meant there won’t be any valleys or it will be easy or without pain. Trusting God is knowing that the valley leads to a mountain, which leads to a mountain top that produces perspective. Our time in the valley determines our growth and strength to climb the mountain which in turn produces the perspective we get when we reach the mountain top. The dreams we dream and steps we take in the valley determine the path we choose and the mountain we will climb. Choose your path!
In so many ways our world is in a valley right now. The world is mourning the loss of family and friends, we are mourning lost jobs and not knowing how we are going to pay the mortgage and feed our children. Amongst all the sorrow, fear, and uncertainty, we will begin to put one foot in front of the other and before you know it we will be climbing out of this valley. Let’s begin to dream of what we want that mountain to look like. Let’s make sure we like the path we are on, that it leads to a view or perspective we can be proud of. Let me encourage you that great things will come out of this season because you have no choice but to reevaluate and to build upon the great things you had when it was normal.
For myself, I am thinking through what I want for this next season and as cliche as it may sound, I want to invest more in relationships. My friendships have taken a hit in this last season and I want to make sure that I put some energy and value into the people who mean the most to me. We have just moved states so everything is different but as it may feel like we are starting over again, we are not. We carry with us the wisdom, growth, and experiences we have had in our prior seasons with us. Starting a new season doesn’t mean we erase our prior seasons but we can leave the not so good experiences and take all the good that we have experienced with us. You can do the same in this season. Here are some questions for you to ponder…
- What are those things in your life that you would like to see change whether they be small changes or massive changes?
- Are there portions of your life, you are happy to let go of?
- Are there experiences or areas of your life you would like to take with you?
- Are you frozen in fear or are you taking steps?
As we keep our eyes set on God, we can be certain that we will find ourselves on a path that will lead to the right mountain. “The Lord makes firm the steps of the one who delights in Him;” – Psalm 37:23. So let’s do some dreaming, let’s give space for hope and anticipation for our next season. A new normal does not have to be bad and full of fear and dread, it can also give room for new ideas and fresh outlooks.
This week, I am happy to conclude my Guest Blogger portion of Autism Awareness month with my husband, Tom. Tom is an amazing dad to our three children and adds a great perspective of our parenting journey through the Autism Diagnosis of our three beautiful children. He tells his journey in an authentic and genuine way. You will most definitely be blessed.
Since Megan launched this blog a few months ago, it has been exciting to see the feedback that has come. Whether it’s people laughing at the Woodies Wisdom posts on social media or the weekly blog, there has been a ton of response about how it’s been uplifting or encouraging. After plotting this for years, I am so glad it’s now live and having the impact it is.
I am delighted that Megan would ask me to be a part of the blog this week! As a part of Autism Awareness Month, she asked if I would share a few thoughts on being a dad with kids on the spectrum. Firstly, let me say that because Megan loves me she would never say anything negative about me, especially not on a public blog…so I guess I’ll have to rat on myself 🙂 Below I’ll write about 3 things I wish I could have/will do better.
When we first had reason to think Elijah had autism, I did not want to even consider it. (Megan has written about the diagnosis process in previous posts.) My own insecurities, unwillingness to ask the tough things and fear meant that I ignored a lot of things and tried to explain away some very obvious signs. Seriously…when my 3 year old runs into church while I’m preaching and turns off the lights leaving a congregation in the dark, with no sense of consequence or that this would be a problem, it might be time to ask questions. There were so many signs, and I ignored all of it. I feel the guilt from that because we probably lost 6-8 months of early intervention that Elijah could have got. It is better to face reality head-on. It takes more faith to stand in front of the monster you’re facing and stare it down than to ignore it all. There will be endless possibilities for me to face the scary reality head-on – I hope I have the courage to do so.
When a parent first hears their child has special needs, the experts talk about a grieving period. What they mean is that the expectations that we had for our kids have shifted. Maybe drastically, maybe slightly, but that change in expectation is tough. My expectation of parenthood didn’t involve IEP meetings, calm down strategies, and the feeling of dread when a kid misses their medication. Expecting the kids to improve and grow is the right kind of expectation. A rigid expectation of how things will all turn out has lead to disappointments. A good expectation is that the next trip to the store with the kids will be better than the last. A bad expectation is there will never be a bad trip to the store ever again. That inevitably leads to upset. I expect my kids to develop, learn, and grow, but my expectations need to grow at their pace, not mine. There’s a possibility that one of the kids will live with us into adulthood, as he stretches and matures, that expectation might stretch too. I want my expectations to be optimistic, growing, and flexible. Focused on growth, not goals. The balance of joy and disappointment shifts when you have this approach.
Patience is a fruit of the Holy Spirit. It is a quality frequently applauded in the Bible. Everyone appreciates it when people are patient with them. But when it’s my turn to be patient, I am terrible. Especially when it’s the kids getting me going. I do not know the journey of other parents, but I can say that often our kids act impulsively without any regard for consequence or what happened the last time they did the thing they are about to do. Sometimes it’s dangerous, other times it’s destructive, maybe it’s just annoying. To protect the guilty I won’t list the crimes here, but I promise there’s been some craziness. It’s in these moments that my patience is noticeably in short supply. I have met some parents whose patience is incredible. I have also realized they have an easier time connecting with their kids and making the situation better and not worse. That’s why I want to do better. Getting frustrated with the kids has never helped. Trust me, I have tried. However, when I’ve kept my head together and been rational, there’s typically been a better outcome. The interesting thing is that even if I’m masking my impatience, the kids still pick up on it. The goal isn’t to hide my annoyance to a very annoying situation but to truly have a loving patience with my children (and I suppose everyone else). I have no doubt that if I improve in this, it will improve just about everything. I’m doing better than I was, but there’s big room for improvement!
There is, of course, a lot more I could say, but these are the things that have stood out to me as I’ve thought about this blog. Definitely look out for the weekly posts, Megan consistently writes amazing stuff. For all the other special needs dads out there, stand strong and face reality, be flexible with your expectations, and pray for your patience to grow.
This week I have a special guest blogger, Doleen Yeldell. Doleen has been an incredible part of our family as our oldest son, Elijah’s Behavioral Technician. She truly feels like a part of our family and has been with us for the last 3 years. The relationship she has built with Elijah has been so special and he has truly grown leaps and bounds with her. Doleen’s primary job is as a District Special Education Employment & Transitional Living Coach. Doleen is also a very talented and amazing children’s author, you can find one of her books HERE. We personally own this book and it is great for this current season we have all found ourselves in.
One major blessing of my career as an educator is my transition to Special Education. I have had the pleasure of working with students on the spectrum for seven of my eleven years in education. My path began as an Early Childhood Teacher and transitioned to a district Special Education Employment & Transitional Living Coach. I must admit my pedagogical philosophy has been challenged to the core; however, I am fond of the journey and would not have it any other way. There are so many accounts of how these wonderful students impact me as I aim to provide them with tools for progress and success. The one constant theme with some of the young adults with whom I work, is never having to discourage being a follower or say just be yourself. They are themselves whether their employers and supervisors like it or not. This also reigns true for my younger after school student. He is a natural leader, intelligent, inquisitive and fun. He will achieve what he puts his mind to. What he will not do, is succumb to the demands of peer pressure.
My students are so courageous, confident and bold in who they are and the hobbies they enjoy. I sometimes tell them, “I want to be like you when I grow up.” It reminds me of the scripture in Romans chapter 12 that states, “Do not be conformed to this world.” I love how my students will not conform to how others may want them to be or look. They will accomplish their goal, just not the way people may want them to. They are jovial just being themselves, and I discovered this trait inspires the people in their surroundings including bosses and supervisors.
Yes, I coach them on interviewing skills and what not to ask a potential employer. Yes, we go over time-management. Yes, we practice conversation skills and following work-place policy. Yes, we discuss how it is not appropriate to blast video game music from your cell phone while working or to wear flag attire instead of your work uniform. Nevertheless, I am so elated to never coach or counsel this group of amazing students to just relax and be themselves. We are faced with challenges and overcome many obstacles that result in learning, laughing, kindness, acceptance, determination, courage, growth and inspiration for the majority of the workday, (the occasional redirection too) for all this I am grateful. This, to me, is how Autism speaks volumes.
Lauren Condoleon is an excellent Occupational Therapist who runs her own private practice, Limitless Victory Therapy Services. She is a good friend of mine and I have watched her develop a special bond to my children, especially my oldest Elijah. She has a wealth of knowledge and has helped our family navigate sensory diets and other OT needs. Lauren is not only a phenomenal OT but pours her heart and soul into it. You can follow Lauren on FACEBOOK and get more information regarding her private practice HERE.
Thank you so much Megan for giving me the honor of writing for your blog for Autism Awareness Month! My name is Lauren- I am an occupational therapist and just recently opened my own private practice, Limitless Victory Therapy Services. Owning my own clinic has been a dream of mine for years now. I have been an OT for 8 years but have worked with children and people with Autism since about the age of 13. The first time I ever worked with a child with Autism, I believe I was in middle school volunteering at Vacation Bible School. The children’s pastor paired me with a boy Joshua. At the time, I had no idea he had Autism. I honestly didn’t even know what Autism was. I just knew that this boy had something different about him. I was his one-on-one aide and my main job was to watch over him and make sure he was safe and to help get him to participate in the VBS classes. Well, little did I know Joshua was a runner and he was FAST. I remember how hard it was for him to sit in the group activities and he would often jet out of the class and down the hall of the church, even running up and down the pews of the HUMONGOUS sanctuary of the church. Well, I was right behind him running alongside him. We developed a special bond quickly and often played in the hallway together or went in and out of the classroom at our leisure. It was during that week that I fell in love with children with special needs. I didn’t know at the time I fell in love with a child with Autism. My desire to work with people with Autism started that summer.
Over the next few years I would volunteer at my church to work with kids whenever I could. I was a teacher’s assistant for Missionettes and helped with a class of pre-school girls my Junior year of high school every Wednesday night. I lived for those Wednesday nights. During my time at Missionettes, the children had a task of memorizing scripture. Well, little did I know I was also memorizing those scriptures and God was changing my heart alongside those little girls. The scripture I still remember to this day from that year is Joshua 1:9. I held onto this scripture during the years ahead as I went through graduate school and during my training of becoming an OT. It also reminded me of that boy Joshua, the spark for my passion all these years- I felt like it was a “God-wink” for sure. During my Junior year I went to a family barbecue at my Godfather, Anthony’s house. I met his niece Debra there who has Rhett’s Syndrome. For those that don’t know, Rhett’s is a degenerative neurological condition where the people who have it lose their motor function over time. Life expectancy is short and they often have cognitive disabilities and medical problems such as cardiac issues and seizure disorders. Well, I quickly established a connection with Debra. This little girl was immobile, unable to walk so I carried her around the barbecue and I remember sitting her on my lap and playing a sort of peek-a-boo game. Her mom came over to me and said “You know, Debra doesn’t connect with just anyone right?”. She told me she saw a gift in me and that I should really look into occupational therapy for a career. I had NO clue what OT was at the time, so I quickly looked it up. Well, it was the perfect mix of medical and teaching that I was looking for in a career. I wanted to be a doctor, but found out I faint at the sight of blood when my Labrador cut her foot once, so that was clearly out! I thought of being a teacher simply because I wanted to have my own classroom and play with chalk (hilarious!). Well OT was exactly this! Years later, during my first school district OT job, I had my own classroom, my own space to decorate including a whole bulletin board AND a chalkboard! My dream literally came true.
Back up to becoming an OT. After discovering OT really was my dream profession, I observed professionals in action. I set my heart on this profession and have never looked back. Being an OT is literally a part of who I am as a person. I cannot separate it any longer from the way I think and live my life- and I love it. Once I figured out what I wanted to do, I applied to many schools and only considered dual-degree programs to avoid another round of applications and standardized tests. I decided on Seton Hall University where I received both my Bachelor’s and Master’s degrees. Fast-forward through the years. Over the course of my college years, during the summers I was a teachers’ assistant at a school for children with Autism, the Developmental Learning Center in Warren, NJ. Can I just say what an amazing experience? This school is tricked out! The entire school is simulated to teach kids in natural environments. The kids learn in classrooms that are completely mocked up as hardware stores, paint stores, a grocery store, a full track, swimming pool, an apartment, and MORE. Here they learn activities of daily living, real life skills and prepare them for jobs as they age out of the school system. There I met a young man David. During this summer job, I fell in love all over again! He was such a sweet kid who loved hugs and deep pressure squeezes on his arms. I remember him quoting or “scripting” lines from the Chase bank commercials. There were so many kids I met that summer that I still remember to this day. I remember wanting to make a necklace for myself with a puzzle piece or even get a tattoo because I loved those kids so much- I still haven’t done either one to this day but plan on getting to that jewelry project someday soon!
Looking back, this school is an OT’s dream. It was then I was introduced to concepts so frequently known in the Autism community- scripting, echolalia, sensory seeking, fight-or-flight responses, a sensory “diet” including crunchy snacks in their lunches, and all the supports that come along the way in schooling. One-on-one aides, OT, speech, behavioral intervention, along with an entire crew for restraint intervention for fight-or-flight or the not so pretty side of aggressive behaviors. In hindsight, these were just the tip of the iceberg in my learning about Autism. It is so interesting reflecting on my journey and realizing that these concepts and aspects of Autism were not explicitly explained to me from day one. I kind of just observed them and heard about them and over the years of schooling and professional work as well as my personal experiences with the kids and families I began to really work with, did it all finally come together for me. I have to remind myself that this way of learning about Autism is probably similarly experienced by the parents and families (obviously on a whole other level). You see what is in front of you, know it is there, but wonder what it is. You might get someone who finally tells you exactly what it is that you are seeing. The people who are really good and make the most impact on your understanding and learning along the way are the ones who take it a step further and actually EXPLAIN what that term or thing you’re seeing IS and what it means. The other part is the people who I’ve seen make the biggest impact on these kids’ lives and actually get them to engage and flourish are the ones who treat them with LOVE, compassion, and just as if they were any other child. I’ve seen how Autistic children know the difference. They KNOW who get them and who doesn’t. They KNOW when you take the extra time to look at them, talk to them, and really see who they are as a person, not just what they are able to show you or your preconceived notions.
Both personally and professionally, I’ve found that the people who interact with those with Autism or taught me as a student along the way without empathy, with SO MUCH structure they lose their humanity, or lack of flexibility- well, no one learns or wants to participate that way. I went through a fieldwork experience at a well-renowned clinic. Well, the two clinical instructors I had, time and time again would say to me “we are not here to teach you but only to foster your learning”. They would constantly take my treatment plans or sessions and say “I just don’t think you get it”, “you don’t know what you’re doing”, “stop focusing on the activities”. Instead of explaining what I was seeing or “doing wrong” they would simply “slap my wrists” and tell me to figure it out. Well, did you know I almost failed?! They extended my fieldwork another two weeks to compensate for my “lack of knowledge and skill”. I was top of my graduating class, president of SOTA (Student OT Association), and KNEW I was called to work with these children and people with Autism. And yet during my training that I ASKED FOR (I literally told my fieldwork supervisor I would not take a pediatric clinical rotation anywhere else- I ASKED FOR IT Y’ALL!), I was coming home every night crying and literally praying my way through those days.
Have you ever been through an experience that was so hard and your brain was working so hard, you had PHYSICAL PAIN?! That was one of those experiences for me. Looking back on that experience, I am thankful for it. It not only taught me so much clinically and professionally, but more importantly it taught me how I want to treat people in my life. I’ve taken that experience and whenever I meet people in their learning process of becoming an OT or parents who are learning about their children with Autism, I make sure I help teach and mentor them as best as I can. Professions are only as good as the teachers who teach those in training. I for one do not learn best from a throw-you-to-the-wind, disciplinarian, hostile environment, kind of teaching. Well, you know what else I’ve learned- Autistic children and people also do not learn best with these methods and ways. I’ve seen the best progress and most engagement from children and PEOPLE with Autism when you get on their level. Treat them like the person they are. Take the time to actually SEE them. Let go of your preconceived notions and what you THINK they need or what you THINK would work best for them and actually take the time to watch, hear, LISTEN, and do what is in the best interest for that specific person with Autism. No two are the same. Not all methods work the same for everyone.
The biggest thing I want people to take away from this post and to help bring awareness about Autism is this: BE HUMAN. Be compassionate. Take the time to SEE the people you’re interacting with for who they really are. When we take a step back and take the time to really listen and see the needs of the individuals and the families we are working with, that is when progress can really happen. You can’t help if you don’t listen. I’ve seen so many programs, schools, and people boast about how they are the BEST, most knowledgeable, and have what it takes to be a specialized program for people with Autism. When in reality, on the inside, these people have no clue. I’ve heartbreakingly seen people use those methods I experienced as an OT student in the name of “behavioral” intervention or a specialized program with Autistic people. When really, I think they lost sight of the end goal- to HELP. Yes, there is a time and place that is 100% vital and essential for structure, “discipline”, and specific methods of learning. However, if we don’t remember to put compassion back into the equation, along with REALLY understanding this neurological condition (because that is what it is), just call it quits because you’re likely to do more harm than good. My aim as an OT, a professional, and private practice owner is to empower families and people in the Autism community to be able to actually UNDERSTAND what Autism is, what Sensory Processing and Sensory Integration is, and to be able to tailor methods to help teach and improve the quality of life and independence level as much as we possibly can. No one should have to do this journey of life alone. And no one should be left in the dust to figure it out by themselves. I for one hope to never treat my clients and their families the way that so many systems do along the way. My hope is that everyone remembers we are all individuals with specific needs and so are the children with Autism we see each day. I hope you remember that in order to see any progress, engagement or quality of life, that we are first and foremost working with PEOPLE. Children. Beautiful children who deserve the utmost respect, honor, and treatment everyday. If you are a teacher, parent, or anyone who works with Autistic people and find yourself burnt out, using methods that are just not effective, or simply don’t understand- reach out. Reach out for respite, ask for external help to relieve yourself, reach out for further education and insight into what you are actually dealing with or misunderstanding. I’ve learned over the years knowledge is power and lack of it causes us to lack confidence and effectiveness in our life. Do not do this journey alone, it was not meant to be lived that way in the first place!