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.
In the mornings I watch my daughter, Esther carefully select the clothing that she will wear for the day. In her head, she sees a fashion diva when picking out these outfits and she has the attitude to match. However, regularly it is something crazy, such as a wild printed shirt under overall shorts with a sequined bow on them along with a skirt over the overall- shorts. Then to top it off, a big bow or sequined cat ears, and a “braid’ that resembles something very different than any braid I have ever seen. I love her sense of creativity but under no circumstances would her outfit match her level of confidence. Now, she is six and I love her but I am not sure she is the fashion icon she sees herself as. It is cute at six, however, I don’t believe that if I was to copy her style, that it would either be viewed as cute or fashionable. We may not do this with clothing, but I do think we try to do this in different ways as adults, especially within the church
Within our own Christianity, we say that God meets us right where we are, yet somehow we find ourselves portraying a picture of how we want people to see us, and rarely is it reflective of a God that takes us mess and all. We feel that in order to be a good representation of God, we have to be the finished product. When we adopt this thinking, we hide all our flaws and only show our best self even if that isn’t a true reflection of who we are. My daughter could care less when she picks out her outfits in the morning of what I think or anyone thinks, that is where she is at. As she gets older she will learn what does and doesn’t match. She will also become more self-aware. The one thing we all have in common is our humanity, the fact that we all fall short. Hopefully, we are growing, we love showing everyone the areas we have already grown in but it is so much more difficult to show our shortcomings or what we are currently working on. That takes vulnerability. I believe vulnerability is a strength if we will allow it to be. My vulnerability makes me more relatable and it also makes others feel safe. There is no safety in shallow relationships. My best relationships are with those who have seen my worst and yet still believe in me, supported me, and have never pretended that I should aspire to be as put together as they are.
We live in a world where people are masters of reading a room and figuring out who they need to be to gain the appeal of the room. We have a world where nobody knows who they actually are anymore because they are constantly fulfilling the needs of others rather than focusing on becoming a better me or more importantly who God intended me to be. There is a very powerful lesson in coming to terms with the fact that not everyone will love you and there are people who can’t handle a messier or more authentic you. Authenticity isn’t just your wonderful moments, it is also your fears, mistakes, and challenges. We are all flawed, we all need grace and compassion. When no safe space exists it is easy to find ourselves isolated and full of anxiety. I know this from my own experience.
There was an experience I had with a church leader several years ago, where I was being open and honest about the grief that I was experiencing. The grieving process had started 4 months prior to this conversation. Anyone who has ever gone through grief knows that it is a process that looks different for everyone and does not have a specific time frame. This church leader had pointed out that they could visibly see that I was sad and heartbroken and then they began to question how deep my roots were and if I was bearing good fruit. That moment really shaped how I approached the next few years after. It meant that I suffered in silence. It didn’t stop my pain, it just meant I kept it to myself and learned to smile a bit more and act cheery even when I felt heartbroken. There was no safety. To be honest, I didn’t even believe that what this specific leader had said, I just knew that they weren’t safe. At that moment I had hoped to find understanding and encouragement but instead was met with judgment.
Rejoice with those who rejoice, weep with those who weep. Live in harmony with one another. Do not be haughty, but associate with the lowly. Never be wise in your own sight.Romans 12:15-16
I love Romans 12 because the whole passage is on genuine love and what that should look like in our own life. Being a vulnerable leader means letting our guard down, it means allowing ourselves to have empathy. Vulnerability means sacrificing our need to share our wisdom in order to listen and connect to what others are experiencing regardless of whether we are rejoicing with them or weeping with them. We need to be with people where they are at, after all, that is what Jesus does has always done.
As church leaders, we get it wrong. We mess up, especially when we are dealing with things we don’t understand and have not experienced ourselves. We need to feel comfortable in those moments to say, I have no idea, I have never been through that but…I know someone who has. For myself, I want to always eir on the side of grace and empathy. There have been many times as a leader where I have gotten this wrong, where I know that I thought I was doing the right thing but I have hurt someone. In those moments I want to have the humility enough to say, I am sorry, I handled that wrong. As leaders, we need to be vulnerable. We need to admit when we get it wrong, we need to be quick to say sorry. We need to not be afraid of people we lead, seeing our faults. Again, our humanity is what connects us to each other. Our highlight reel will only isolate us and those around us.
My encouragement to you is, your own failures and weaknesses might be exactly what God wants to use, they may actually be the connection point to someone else finding freedom. Haven’t you experienced healing because someone else has been vulnerable enough to share? I know I have. People are craving authenticity in a world where authenticity is lacking. Choose to be someone people can connect to, someone who is confident regardless of their shortcomings because you know that God is bigger than your shortcomings. One of the most miraculous things about humanity is how we continue to thrive despite our weakness and insecurity because we recognize our need for God.
LA Davis is a friend of mine, who I have asked to share this week. LA is someone I trust and knew would give a much needed perspective as well as her own experience with Racism in America.
January 2020 I believed, would be the year of clear vision and fresh beginnings. Well, I was wrong, 2020 has caused me to lose my breath over and over.
With COVID-19 as the green screen backdrop; Breonna Taylor, Ahmaud Arbery, and George Floyd. Oh, and let’s not forget Christian Cooper (NYC bird watcher), who’s still breathing, but for a moment caused me to once again lose my breath.
All these incidents have highlighted the infectious disease of racism. Many thought it was cured while others thought it lay dormant, then there are folks like me that are infected and injected by it every day. The infectious virus of racism didn’t start yesterday, last week or a year ago, it’s rooted in history and has evolved over decades.
I grew up in a shore town in New Jersey, in an apartment complex with tenants that were all blood-related. My best friend was the only other child on the block aside from my siblings and cousins. Her family owned a restaurant that they lived above.
We played together daily; hung out at each other’s houses, went to school together, and attended each other’s birthday parties for as long as I can remember. We were alike in every way possible, except for the fact that she was white and I was black, and it never ever mattered.
After 8th grade, my family moved to an offshore town, and sometime later her family did the same. Our friendship has slowly diminished over the years and has become seldom Facebook hello’s.
Entering High School in the new community was a culture shock. I went from seeing more people who looked like me to being in this predominately white High School with kids that lived in affluent neighborhoods, with parents who were Doctors and Lawyers. Meanwhile, I humbly shared a two-bedroom apartment with my mother and two sisters.
My first experience of racism and what is now widely known today as white privilege was introduced to me during my freshman year. But I managed to survive it, all while not having a voice or voices to help navigate me through it.
But did I really survive it? Fast forward. Both my sons, who are currently 26 and 21 years old attended and graduated from the same high school. Although, the school had become a little more diverse the generational curses of the past still remained.
During my oldest son’s sophomore year, I bought a house in an affluent neighborhood near the high school. My neighbors weren’t as welcoming as I thought they would be. My house started the block so I only had one neighbor next to me, which was occupied by an older white woman that I never met (she’s since died). I’d often catch a glimpse of her peeking through the curtains and when I acknowledged her presence, she would quickly duck away. Sadly, it was a fun little game for me.
During one of my youngest sons sporting events, his team played against an opposing team that came from a predominantly African American community. After our team’s loss, my son who was not wearing his team jersey was told by an older white male “you people need to go back to where you belong”. Like any momma bear protecting her cub, I pounced, and let’s just say that man scurried away after being told that “his community” was also my community. (I gave you the radio edit, I didn’t know Jesus then.) This all happened in 2010.
There were times when I’d have visitors to my home and police officers would park in the vacant lot directly across the street from my house. I’ve had the police called on me during a graduation party for my son, allegedly for the music being too loud.
My sons have been profiled, stopped by the police, asked where they were going or why they were traveling in a certain direction, stopped after being seen with white female classmates to ask the female if she was ok or felt safe. This was a reality, not a movie.
Oh, and by the way, I have been in Law Enforcement for 15 years, currently as a Detective. I am and have been the only black female police officer in my department. During the length of my employment, I have had personal experiences with discrimination as a female and more recently with disparaging racial comments said by a person of rank.
So yeah, I’m having a tough time breathing lately! I can’t breathe at work, I can’t breathe in society and I can’t breathe in front of my sons who look at me as being a part of an entity that’s killing black and brown people in this country. They leave the house in fear, wondering AM I NEXT?
I have no guarantees, all I have is faith and prayers for those fears and that reality for them to go away! Their fears are legit, my fears are legit and they shouldn’t be dismissed by people who don’t understand.
So while folks in this country are fighting to take off masks, to get hair cuts, to go shopping and golfing, I’m fighting an uncontainable virus rooted in hate.
My flesh wants to fight, kick and scream but because I didn’t invite God into it, I lose. So, I have to surrender the fight to him.
“Anyone who claims to be in the light but hates a brother or sister is still in the darkness.” 1 John 2:9
When I asked LA to write this week, I was so grateful that she said yes. You can hear glimpses of hope in what she writes as well as the raw emotions of a lifetime of experiencing racism. Her story is not just hers but the story of many others. For this reason, it is important to listen to what is being said by our brothers and sisters who are hurting and experience racism and then evaluate ourselves and search for areas we can do better.
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!
One of the questions I asked on social media was, “What do you wish people understood about Autism?”. The feedback is so insightful. As much as I enjoy hearing from parents, I found the responses from professionals in the field to be incredible. As a parent, there isn’t anything I wouldn’t do to make the world a better place for my child. However, all the teachers and therapists we have met along the way have been so caring and passionate. When I asked the question, I assumed I would only receive feedback from parents but I was so excited to receive feedback from those who serve the Autism Community so passionately. Here are some responses from a mixture of parents and professionals.
There isn’t a specific look to Autism and words such as “they don’t look autistic” can be hurtful.
We see this in our own family. Our oldest son who’s autism is more pronounced is regularly given more patience and understanding then our other two who are not as obvious. My youngest son is an angel at school and typically they will only see his rigidity when something changes in schedule or he has to adjust quickly. This usually comes in the form of concern over the change and pointing out that that isn’t usually how it goes. However, at home, he will come home and be beside himself. He will be easily agitated from the time he gets off the bus, yelling and screaming at me, hitting me, and meltdowns all afternoon. He is also the one that gives me the most issues in the morning with getting dressed because they have to be a certain texture and look, short sleeves don’t go with pants. It isn’t winter, so you can’t wear your winter coat and it is technically summer so I should be able to wear my shorts even though it is only 55 degrees outside. You never know what each individual’s challenges are and this goes beyond Autism, so treat everyone with kindness!
Those with Autism can’t be “fixed”. We have to learn the way they see and feel things and then adapt to that.
Love this one, Autism is not something that can be fixed. One of the greatest things I have learned is how amazing and incredibly different my kids see the world. It is unfair for me to expect them to enter into my world if I am unwilling to enter theirs. The way they see things is remarkable and the way they experience the world can be intense and sometimes too intense for them. There was one incident that stands out to me and it was a moment that was an epic fail on our part. Elijah does not like Home Depot for some reason, stores are difficult for him as is but he really dislikes Home Depot. However, one day we needed to run in there and get something and we thought he would be fine once we went in despite his protests. We were wrong, Tom had to make a very quick exit carrying Elijah kicking and screaming out. He finds the store overwhelming and we cannot fix that for him but we need to respect it. Life became so much easier once we stopped expecting them to do and act how we want them too. We remain flexible because we know that is challenging for them. They give some truly beautiful gifts. My oldest, when he tells me he loves me, it means the world to me because he is easily the most honest individual you will meet. He is sometimes too honest, he says whatever he thinks as fact. My daughter tells some of the best stories, they are almost believable. I love hugs from my youngest son because when he gives them to me they are worth gold because hugging is difficult for him, physical touch can almost be painful for him due to his sensitivities. We are continually adapting to the needs of our children but they truly have also given us some of the most beautiful gifts.
I wish people knew that just because an individual with Autism isn’t looking at you or is non-verbal, they can still hear you!
100% yes! I was recently in a setting with an individual who was nonverbal and the people who were around him were talking about him as if he couldn’t hear them. My heart broke for this young man. This was in a setting where they should have known better. No communication device or pec card system was set up for Him, this made me so sad. His inability to speak was not reflective of his cognitive ability. He could hear perfectly fine and process what was being said, he just was unable to use his words.
Our oldest son has a difficult time at making eye contact and is often seen to be in his own world, however, he hears everything. If I ever doubt that he heard me, I usually hear him repeating verbatim conversations from earlier in the day, this typically happens late at night when he should be asleep. Everyone deserves to be treated with dignity and deserves common decency. You would never walk up to a conversation and talk about someone who is right next to you as if they aren’t there. We shouldn’t do that with anyone. My youngest son tells me all the time, “Mom, I am always listening to you, even when you don’t think I am”. As creepy as that sounds, it made me evaluate how I talk when he is around.
None of these comments are meant to condemn anyone but to inform people. Up until the ’80s, individuals with Autism went undiagnosed and were diagnosed with many other mental health issues as well as in many cases institutionalized. We have come so far in our knowledge and research. However, if you are like me, I didn’t know before my kids were diagnosed. A lot of these misconceptions were misconceptions I held as well. This is why I love April because we have the opportunity to shine a light on Autism and educate to help provide a world that is more inclusive and sees the many gifts every individual has to bring to the world whether they have Autism or not. We all have a purpose and giftings and should be able to find a place where we can be an asset to society. Autism should not be the defining factor of what an individual can contribute. Individuals are so much more than there diagnosis!
Today, April 2nd is International Autism Awareness Day and April is International Autism Awareness Month. This is the month where we place blue lights on our house, blow bubbles and wear blue in hopes that it makes the world a more inclusive place for our children. We have three beautiful children who are all on the Autism Spectrum. Autism used to be a really sad word in our home. As I have shared in another blog, at the beginning of my kids diagnosis’ all I could see was the challenges that my kids’ would have. I was worried, nobody would see the potential that I could see in my kids. I was worried that people wouldn’t love my kids due to their behaviors. Then the selfish parts of myself worried people would judge me for their behaviors. The truth is that some of these are unfortunately true due to a lack of education. For the most part, I have come across very understanding people and people who believe in and love my kids. Nevertheless, this is why we have Autism Awareness Month, to raise awareness and advocate for more inclusivity
In raising awareness and advocating for inclusivity, I will be having guest bloggers throughout the month of April who have different connections to the Autism Community. Tom and I have truly met some of the most amazing people in our Autism Community. We cannot wait for you to meet them as well.
This week I asked a couple of questions through my social media to gather some questions about autism as well as what people wish others knew about autism. I will do my best to address and share some of these. This will be a two-part blog post. There were many questions to address, however, these seem to be the most frequently asked. Just a reminder, I am a mom and by no means do I pretend to be an expert. I can only speak to my experience as well as what I have researched.
How is Autism Diagnosed?
The diagnosis process was very different for my oldest as compared to my twins. They always hope to diagnose children early so they can receive early intervention. The process for the twins took about a year from the time we started having concerns at 2. They were closely monitored by a Developmental Pediatrician who eventually referred them on to a Neurodevelopmental Pediatrician. My oldest was evaluated by several people who observed him. There was a Neurologist, Speech Therapist, Occupational Therapist, and a Psychologist in the room. In both evaluations, they looked for speech delays, social delays, physical delays as well as repetitive behaviors and rigidity. They also looked for sensory aversions as well as sensory seeking behaviors. They use the DSM-5 to diagnose and in order to be diagnosed your child has to meet the criteria.
This is a very good question because I have come into contact with a very small population of people who have felt that parents seek out an Autism Diagnosis as an excuse for there bad parenting. It would be very difficult to receive an autism diagnosis for your kid due to bad behavior. The DSM-5 criteria wouldn’t be met simply due to negative behavior. This brings me to the next question.
Temper-tantrums and meltdowns, is there a difference when it comes to Autism?
The answer is yes! My children have both! The difference is the level of control and duration in my experience. There are some behaviors my children can control and others in which they cannot. Various therapies work together to help an individual with autism control the uncontrollable behavior. My youngest son, can have full-on tantrums just because we didn’t get him what he wanted and when he wanted like his neurotypical peers. However, my son can also come home from school after having held himself together all day at school and then come home and one little thing is enough to send him from 0-10 in a matter of seconds. The duration of this meltdown can last from as little as 20 minutes to a couple of hrs. The behaviors that come out can be aggression, throwing objects, not hearing what I am saying. Typically we have to ride these out because, he will not allow anyone to touch him in these moments, talk to him or offer any comfort. This is heartbreaking as a mom. However, it does look like a temper-tantrum but does not look typical for his age and lasts longer than what is typical.
Do all Individuals on the Autism Spectrum have Savants like ‘Rain Man’?
No, every individual on the Autism Spectrum has various strengths and weaknesses. There are individuals who have remarkable abilities regarding memory but not everyone can calculate intense mathematical equations or count cards. However, it is not unusual for individuals with autism to have a great interest that they are experts on. My oldest who is eight can tell you every flag of every country in the world, he is humble enough to believe that Tom and I also know every flag to every country. Moses is a deep intellectual thinker and will stump you with many things that most adults don’t think of. My daughter has an incredible memory and only has to hear a song, book, or movie once before she has it memorized. However, they do not have Savants but are incredibly smart.
By listening and asking questions we can create a more inclusive world. Speaking for myself, I would much rather someone ask me a question about my children to gain understanding then to distance themselves from my child due to a lack of understanding. Please, keep asking questions and listening. Show empathy and kindness even when you are uncomfortable and don’t understand. There are challenges that we all face whether we have a diagnosis or not, it is important however that we are known for who we are and not by our diagnosis. Everyone deserves to be known and not stigmatized. Part two to be posted tomorrow!
You may have noticed that I have been behind on posting. Life is crazy right now as we all know. Coronavirus has spun us all for a loop and we just so happen to also be in the middle of selling our house and moving state. We move in only a couple of weeks, I did not anticipate homeschooling, packing boxes and showing my house all at the same time. However, if you know my family at all… you would say, of course, you would be moving in the middle of a pandemic. That is how our life seems to pan out, never straightforward, ha!
Saying all that, my kids have been doing incredible. We have been having a lot of fun. Tom is home as well so that has been a huge help and has made for some incredible quality family time. We have always respected the educators and been so grateful to them but my appreciation has definitely only grown. We have three kids and they all have different curriculums they are doing. Friends, if ever I even thought homeschooling was a good idea, I can officially say that I do not have what it takes. Teachers, you are amazing. Special Education teachers you are heroes, seriously. How you cater to multiple needs and prepare various lesson plans to accommodate various needs is phenomenal. When school starts again, I guarantee my kids will also have a new appreciation for there teachers after having had Teacher Mom for several weeks.
So as I said we are moving! We will be moving to Central New York in the middle of April. Tom will be going on staff as an Executive Pastor at an incredible church. From the first time we went up there we just had a peace that the church would be an incredible church to be apart of and we just love the Lead Pastors and the staff. We are so excited to be up there and to get started. God has been so amazing in how all of this has come together.
We have been blown away with how everything has fallen into place. Our kids were able to meet there principal and have a private tour given by him. The school is only a four-minute drive from where we will live and we have only heard amazing stories of how great the school district is. The special education department is dedicated to providing support as well as inclusivity. We are excited to see the growth in them through this next season. There are so many small things that God has done as well that would seem silly to others but mean the world to us.
Last year I read the verse from Isaiah 43:19 and immediately knew that it was for me. “But forget all that— it is nothing compared to what I am going to do. For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland”. At that time we didn’t know we would be transitioning from South Jersey but I knew that God was doing something and it was going to be new and exciting. Here we are a year later and moving states and it is not short of excitement.
For many, this season may feel like a wasteland. There is so much anxiety due to the economy and this virus. People are losing their businesses and worried about losing their homes. There is hoarding to ensure families are taken care of. People are buying out moving boxes, I know this because I need them to move and they are sold out at some places. Why? My only assumption is to box up the extra food and supplies. This season might feel and look like a wasteland, you may be overwhelmed with anxiety and fear. There have been times where I feel the anxiety and fear because we are an immune-compromised home. However, as a family we will choose to set our eyes on the pathway through the wilderness, on the rivers, the places of refreshment. This season will not last forever.
Look to the future with hope, there is a pathway that will lead out of this wasteland. There are little pockets of refreshment, whatever that may look like. We are resilient and as we continue on this path, the pathway includes quarantine and safety but it does not mean we have to be overcome by the fear of the unknown. Something I am very certain of is that when there is a season of uncertainty and loss of stability, new and fresh dreams are born. What dreams do you have? How has your perspective changed for the better? How have your relationships grown against all the odds? What are you hopeful for? Take some time to make room for the new! There is something new God is doing!
This last season, at times, felt like a wasteland because we didn’t have any certainty but these verses provided a peace that God was leading us into a new and refreshing season. It gave us the hope that our best seasons were ahead of us. When I think about this move to New York, I see God’s faithfulness and favor on our lives. It overwhelms me with how good God is, He doesn’t owe me anything and yet He gives good gifts. When the world’s promises are empty, His are concrete. God doesn’t provide pathways out of dark seasons because He has to but because He love us and because He gives good gifts. There are good things ahead, find the pathway and look for His goodness.
The most challenging part of parenting I have encountered so far is watching my children experience pain whether it is emotional or physical. When Moses was six weeks old, we learned that he had Craniosynostosis. His skull had fused while in utero which meant ultimately he would have a disfigured head and it would put pressure on his little developing brain. The solution was major surgery which would include cranial reconstructive surgery. The cranial reconstructive surgery would involve removing pieces of his skull and reshaping them as well as cutting little holes all over his scull to allow the brain to grow. Even though, the surgery sounded scary and painful, we knew it was what was best for Moses and never hesitated in our decision.
At eight months Moses underwent this incredibly painful surgery for an opportunity to have a better standard of life. The alternative was a shortened life-span, cranial-pressure that could cause severe headaches, blindness, and developmental delays. The surgery was a gift for Moses but it didn’t come without challenge. It required him to be brave and go through a painful recovery.
Moses’ surgery went perfect but it was painful for Tom and I to watch Moses’ recovery, he didn’t understand why his head hurt, why his eyes were swollen shut and why he was in a hospital bed hooked up to several different things. However, the surgery was a necessary pain so that he could have the abilities he has now. Craniosynostosis is part of his story.
We have used this part of Moses’ story to show him how brave he was and how his future was greatly impacted for the better through that surgery. The scar across his head acts as a reminder of how amazing it is that his life trajectory changed that day. Moses is incredibly smart, he excels in math, is inventive and has a long life ahead of him. We will forever be grateful for that surgery.
Teaching our kids that sometimes pain is necessary for growth, necessary for much-needed change and apart of life has been so important to us. There are painful times in life where we question the why behind what we go through. I often-times wonder if God is like Tom and me looking at our eight-month-old Moses who had no understanding of why we were allowing the doctors to cause him pain, he was unable to see affect it would have on his future. We didn’t enjoy watching our son go through the pain, it was heartbreaking but it was essential because we wanted the best for his future. We wanted Moses to become the Moses he was created to be. We allowed Moses to go through the pain of his surgery to avoid future pain that would have been more devastating.
We don’t always understand why God allows us to go through pain but we also do not have the big picture. Craniosynostosis wasn’t a punishment for Moses, neither was his surgery. However, he has greatly benefited from what caused him pain. He knows he is courageous and can do hard things. We learn through our experiences, what is inside of us. There are some really incredible strengths in us that we may not know exist until we are in a place where we have to use them.
We have incredible opportunities as parents to teach our children that life is not without pain and it most definitely isn’t always easy but they are brave and resilient. They can not only can get through painful times but they can actually come out of them stronger and grow in empathy and love. Sometimes there pain is essential to avoid future pain.
God doesn’t enjoy or relish in us being in pain. However, God has an incredible way of taking truly painful parts of our story and pulling out the good, even if that good seems so small. Whatever difficult and painful thing you are going through right now has the potential to bring out some incredible treasures within you that you didn’t know existed. It doesn’t minimize your pain and suffering but it gives bravery and courage to your story.
Just like Moses’ scar across his head, we have scars that tell a part of our story. What parts of your story can you now look back on and say I am____ (fill in the blank) and I wouldn’t have known it if I hadn’t have gone through that experience? Or, where can you say, I wouldn’t be who I am today without that part of my story? I most certainly can say that about many experiences. You may not be able to see any good that has come from your pain and that is ok. You may even want to scream at me while reading this, I’ve also been there. My hope for you is that one day, you will see the incredible strength and courage you have to get through it.
In 2015, my oldest son Elijah was diagnosed with Autism. Autism was new to us, I knew very little about it. We had known for a while that our son wasn’t typical of his peers and we had shared concerns with Pediatricians who responded with all children are different, some children take a little longer to communicate, to speak in sentences, etc. In my gut, I knew that something else was going on but was happy to have the doctors put my mind at ease. However, I will forever remember the day when I learned about autism.
We lived in a small town in Montana at the time and our next-door neighbor was out of town and he had a lady house sitting. She had a little boy about Elijah’s age and she came over so the boys could play in my yard. She began to tell me about her son and how he had been recently diagnosed with Autism. Out of curiosity, I asked her about autism and how they diagnose. As she began to tell me about the behaviors, the learning delays, and the sensory aversions her son showed; my heart sank. She was describing my son.
My son, Elijah, spoke little for a three-year-old, he knew all his numbers, shapes and alphabet but he could not say, ‘Mommy, I’m thirsty’. Elijah rarely engaged with me, I would try to engage with him but I was never sure if he even knew I was in the room. Blocks with letters and numbers were his favorite, he would line them up and yell out the numbers and letters on them. Nightime was difficult, he wouldn’t sleep and we had tried everything. He would regularly stay up until one or two in the morning engaging in destructive behaviors in his room all while rehashing his day by repeating word for word what he had heard throughout the day. Noises were difficult for him and he would regularly say ‘ what’s that?’ when the furnace turned on or someone was mowing their lawn. If it was a loud noise, he would cover his ears and occasionally scream or cry. These were all things that this lady was telling me about and then she said to me, ‘has your son ever been tested’? “He seems to show some of the same signs as my son”, with that sinking feeling I held it together and asked how to began the process for screening? Since, that conversation, I have lost touch with that lady and her son but I will forever be grateful to her. She did for me what no pediatrician or any friend had done, she educated me and then was honest with me about my son.
After that conversation, I spoke to Tom on the phone and told him. It took us a few months of denial before we reached out for the screening. After being put on a waiting list, Elijah was diagnosed at almost four with Autism Spectrum disorder. My heart was broken as they explained to us the challenges he would face. In many ways, it felt as though our lives had changed overnight even though Elijah was the same Elijah he was yesterday. The weight of grief I would carry over the next year sometimes was crushing. We all have dreams and aspirations for our children and I felt like mine had not just changed but had been demolished.
Many well-meaning people would talk to me about the vaccine argument, special diets, essential oils and other success stories they had heard. A lot of these were more painful than helpful because they all pointed to my son’s challenges. It felt as though all the advice and suggestions were to lead me to thoughts such as ‘Maybe if I hadn’t vaccinated him, he wouldn’t have autism’, ‘maybe if I did XYZ it would cure him’. All I wanted was my son to be accepted and it hurt to have well-meaning people trying to offer solutions to change my son or offering reasons as to why he had autism.
Every waking moment was spent researching Autism and all of the therapies he needed and special schooling accommodations, all of which were not offered in the small town we lived in. Then I would cry myself to sleep at night thinking about his future and our future. All the research in the world would not change his diagnosis but it could help him with the challenges he faced. So, we moved to New Jersey where they had the best services for Elijah.
We plugged Elijah in an incredible school which I will forever be grateful for and enrolled him in Speech and occupational therapy. We were doing everything we could but it was hard. Life was difficult. Parenting was heartbreaking, as a mom, I wanted to comfort my son when he was hurt or upset. He didn’t want me, he wanted to be left alone. When I would come near, he would scream and get more upset. Tom would want to play with him and he showed very little interest in him and sometimes would become annoyed at the disruption. Elijah showed little interest in us or his siblings.
It wasn’t long after we arrived in NJ that we began to see delays in the twins too. The mom guilt set in and I began to think that maybe it was my fault that they had some delays because so much of my focus had been on Elijah. However, in 2017, both of my twins were also diagnosed with autism. Moses, was very aggressive and anxious all the time. Esther was reciting whole movies after having only watched them once or twice. The days were filled with hitting, biting, throwing, attempts to elope and meltdown after meltdown. It was exhausting.
This all sounds as if I am gearing up to tell you about this huge turnaround, but I’m not. What changed? My perspective changed. Every day had become a day to survive, not to enjoy. Every day was another reality check of how much work it was. For a long time, it felt like I was living for bedtime but often that came with its own challenges, many sleepless nights, laying in beds for hours until they fell asleep.
My perspective changed when I realized as I was dwelling on all the things we couldn’t do as a family and all my kid’s challenges, I was missing out on the little victories. They were passing me by, I wasn’t enjoying my children. I loved them so much and it hurt so much to see their challenges, that was all I could see. All I could see was my inadequacies as a parent every day, my own selfishness which was followed by guilt. Once, I recognized that there were challenges that my kids were overcoming and that I needed to celebrate those, my perspective began to change.
There have been so many amazing firsts, the first time Elijah said hello back to me, or when he said ‘can I have some milk’ as opposed to just milk. Then there was the time when he surprised us all and said hello to Tom unprompted followed by a ‘how was your day?’ Once I stopped expecting my kids to join my world and I began to join theirs, life has not stopped being filled with new perspective and laughter. Getting the opportunity to see how my children view the world is a gift that I will never take for granted. My children have many challenges but they have so much to offer this world. They have changed my world and how I see it. There are new accomplishments every day that may seem small to others, but they have brought me so much joy and pride in them. They are amazing and the amount of work, effort, and endurance that it takes for them to overcome these challenges deserves dance parties, high fives, and ice cream.
In our household we truly celebrate everything. They are beautiful gifts and are a joy to everyone they meet. My daughter, Esther, impresses me daily with her ability to memorize whole entire movies or songs after having only seen or heard them once or twice. My son, Moses, is so inquisitive and is amazing at creating these incredible inventions such as catapults, laptop stands, comic books, envelopes, maps, board games, etc. Elijah knows almost all of the countries of the world and their flags. They are amazing as they are and I am blown away regularly with the fact that I am their mom. Once my perspective changed, I began to enjoy and celebrate there strengths and accomplishments more. Their challenges have not gone away, some have gotten easier while some are still very difficult and heartbreaking for me to watch at times. Those feelings of heart-break and frustration no longer occupy my every day, my gratitude and pride in them do.
Maybe you can relate to my story or maybe your story is different. One thing that I know for sure though, is that when we learn to be grateful for what we have and rejoice in the small victories, we gain perspective and more joy than we could have imagined. There is always something to celebrate even if it is just getting out of bed in the morning or checking one thing off your to-do list. Life can be overwhelming when we can only see the challenges. What are the little things we can be grateful and proud of today?
The most important and life-changing lesson my children have taught me is to stop and celebrate the small victories. When my three kids were diagnosed with autism, there were a lot of challenges and hurdles that we knew they would face and that we would face as a family. For a long time, I was overwhelmed every day by the day and its challenges. There are still days like that, where I feel so overwhelmed by life and all its uncertainties.
There are many things are very challenging, when you have children with autism. Going to a restaurant, I better have my running shoes on and bill paid at the beginning. If I want to take all three kids to the store by myself, yeah, that never happens. There are so many stories I can tell you about where it all went wrong, some highly embarrassing, some terrifying, some heartbreaking and some just flat out frustrating. However, I will save those for another time.
Perspective truly is vital to contentment and joy. By no means do I have this down. There are days where I am just sad or overwhelmed by the challenges of life and can’t seem to get myself to see anything good. However, I am learning that there is always something to be grateful for and always something to celebrate. There are so many highs and lows in life. Life can be unpredictable and can really throw difficult things in our way. Even amongst all of it, there are little moments along the way to celebrate. Some days it may be that you chose to get out of bed, or that you have a bed that offers you comfort and rest when it is too hard to get out of bed. When we celebrate the small victories in life, it doesn’t mean denial of your current season or that we don’t allow ourselves to grieve. Acknowledging the small victories gives us hope. Hope is important and vital to survival. Hope will get you through the most difficult of seasons.
When I began to celebrate the small victories in my kids, it was hard not to be grateful. My husband and I are so grateful for the community and team of therapists and educators we have around us. They have seen me on my darkest days and have encouraged me to see the accomplishments and growth my kids have made. These people are superstars in my life and have inspired me in so many ways. If you don’t have people around you that do this I would encourage you to read my last blog. These people are largely responsible for the victories we get to celebrate.
My oldest son, Elijah has known the Pledge of Allegiance by heart for years now and he could be heard around the house saying it and yelling a big ‘Amen!!!’ at the end. He is incredibly smart but doesn’t always see the value of sharing it with others. Recently, Elijah not only recited the Pledge of Allegiance over the intercom for the school but also read out the announcements. Elijah saw value in reciting it in front of his peers, this was a victory in our books and was celebrated. Elijah rarely does what you ask just because you ask. Often, things need to incentivized and even then sometimes it just doesn’t happen. A couple of years ago I tried to get Elijah to have school lunches in hopes that maybe he might see his peers eating certain foods and try them himself. It was a fail, he is such a picky eater and there is no incentive big enough to get him to try new foods. This year, however, I decided to just mention to him in passing that if he sees something he wants he has lunch money on his card and he can try it. To be honest I wasn’t really expecting him to do it. He came home very excited to tell me that he had tried a peanut butter and jelly sandwich. I have never been able to get him to try a PB&J. We celebrated. There was jumping, there were high fives and lots of praise! It may not seem like a big thing but it was a victory that gave me hope that one day maybe we will try to eat vegetables other than pickles. In those moments I could say to myself, he’s been reciting the pledge for years or it was just a PB&J, it wasn’t something healthy. However, it isn’t helpful to my children or me. These are all small victories that will lead to bigger victories and that fills me with hope.
If you are anything like me, you are hard on yourself and your worst critic. At the end of the day when that voice says you didn’t get everything on your list done, you can choose to celebrate what you did get done instead. If you are in a season of heartache, I have been there a few times myself and there were days the pain felt too much and I couldn’t see anything good and honestly sometimes didn’t want to. If that’s you, you will dance again. One moment at a time, one step at a time, you will get there. The victory in these seasons is that you survived another day when you didn’t think you could. For that you are courageous.
Last spring I signed the boys up for a soccer program that they have for children with special needs. The program is great, they teach them soccer skills and then at the last practice they play a game with the parents. The plan originally was for Tom, my husband to go with the boys and Esther and I were going to have some girl time every week. However, Tom ended up having to work, so I had to take the boys every week and Esther had to watch the boys practice.
I thought that Esther would be upset at the thought of not being able to play, but she wasn’t. Instead, she took a self-appointed position as the team cheerleader. She would stand on the side yelling, “give me an A, give me a P, give me an R, give me an E, go Elijah and Moses”. Esther may not have been able to spell or read, but it did not put a damper in her spirit. She was doing ‘cartwheels’ and leg kicks and everything. She could have been jealous that she wasn’t the one playing or she could have called out everything the boys weren’t doing but instead she chose to cheer them on. She wasn’t calling out where they lacked but she was calling out there potential to be superstar soccer players. I love my little girls’ spirit.
If we lived in a perfect world and were surrounded by people who cheered us on, we would truly believe the sky was our limit. We wouldn’t have any inhibitions. We would truly excel in our talents and gifting. However, we do not live in a world where everyone is cheering for us, there will always be critics. It has been said many times and in many different ways, that who we surround ourselves with will determine where we go. Sometimes we can control who we are surrounded by and then sometimes we just simply can’t. We need to identify who’s voices we hear the loudest. Sometimes the line can be a bit blurry of who are critics are and who are cheerleaders are.
One thing we do know about cheerleaders is that they cheer whether their team is winning or losing. It doesn’t matter if their team has a slim chance of bouncing back, cheerleaders call out the best in their team. After-all a cheerleader has seen their team at their best and knows what they are capable of. They know their strengths and they know their weaknesses. However, they are there to cheer on the best in there team.
If you are surrounded by critics, you will only see your shortcomings and you will avoid risk at all costs. After all, risk may lead to failure and failure may reveal your own weaknesses. Your weaknesses aren’t safe with critics. Critics like to focus on other’s weaknesses and rarely get to know your strengths or appreciate your strengths. Listening to critics will evoke fear and you will tend always lean towards the safe choice or stay put. Fear will also cause you to over-analyze your decision-making abilities.
However, cheerleaders will call out the potential that you may not even see in yourself. When you feel like giving up they are the ones reaching out to you and encouraging you, telly you that you’ve got this. Find those people who see the best in you, who will pull you up when you need to be pulled up and who will even push you when you need a bit of a push. Cheerleaders will remind you of your strengths when you feel like you have failed and push you to try again.
There are many seasons where I have felt overwhelmed by critics. One particular season comes to mind where I thought that the people I had surrounded myself with wanted the best for me, that there harsh words and critiques were there to help me. That may have even been there intent but it just left me feeling small, incapable and not enough. I wanted to be teachable and take in all the feedback because I wanted to be a better me. This individual had told me I was too loud, attention-seeking and prideful. So I felt I needed to be quiet, never talk too much or joke around in case it was perceived as attention-seeking and that I needed to fade into the background to become humble. This person also had convinced me that those who cared about me most were not good for me. I had eliminated all the cheerleaders in my life and had believed the very worst about myself.
Once I realized that this person’s voice needed to be removed from life, I made drastic life choices to ensure the voices in my life were positive voices and that they were people who genuinely wanted to see me do well in life. That season of life taught me to be very careful with who you allow to influence you. That season helped me evaluate myself and recognize the areas where I was at risk of being a critic.
Regularly, I ask myself am I a critic or a cheerleader to those around me. I know which one I want to be. Cheering people on will always cost more than being a critic. It takes patience, being supportive, and being there for the long haul. Oh, but when they win, you feel like you win too. Critics don’t plan for people to succeed, they plan for people to fail. Critics hone in on every mistake. We don’t cheer for people because they are perfect but because in spite of not being perfect, people do succeed.
Maybe you don’t feel like you fit into the role of player, critic, or cheerleader. Maybe you have sitting on the bench. I want to be the one to come along you and say it’s time to get up, you got this. You have what it takes. We might even fail, but we are going to fail together until we win! Everyone has there unique part to play. If you need to sit out on the bench for a bit to catch your breath or relax, that’s ok, just don’t stay there. The world needs you and what you have to bring.
As you can see from the picture, I have this placard hanging in my house. You can see the cracks in the heart and it looks outdated and worn out. From looking at it, you wouldn’t know the story behind it or the journey it has been on. It isn’t perfect but it is Imperfectly Beautiful and it means the world to me…
Over ten years ago, I was holding the broken pieces sobbing uncontrollably. My heart was broken in a million pieces and I just so happened to be holding a broken heart that was so much more than a gift. It was a gift my brother had given me for Christmas. I had packed it so carefully and put it in my suitcase for safekeeping. Now it was broken and it would never be as it was again. Devastation was an understatement of how I felt.
We were moving back to the States from Australia, so we had packed up all our prized possessions and were stopping off at Toronto for some of our best friends’ wedding before going back to Montana, where my parents lived. One of our friends was bringing up our suitcase when he had noticed that the placard had been broken on the plane. Our friend had no idea of the importance that it held to me and was caught off guard by my uncontrollable crying. After all, it was just a placard, one I surely could replace. He didn’t know it was from my brother.
My brother, Timothy had passed away only a few months before that. He had passed away only 3 days after I had opened that gift. My mom had told me, he had spent a long time putting thought into and choosing that specific placard out. My husband and I had just been married in November and he wanted to give us a gift for our new home. Three days later he was gone and I was shattered. This was the last gift I had received from Timothy, it was so much more than a placard. It was one of the few tangible things of Him I had left to hold onto. Now it would never be the same, I couldn’t help but think that the broken pieces I held, that were once a heart was how I felt. I felt like my heart was broken and could never be put back together again.
My husband held me while trying to comfort me by assuring me it could be glued back together. However, I just wanted it to be like it was before it was broken. I wanted everything to be like it was before my heart was completely and utterly broken a few months before. Life wasn’t fair and it was hard to imagine it ever being good again. After all, does a broken heart ever look or even operate as it once did? Can something broken actually be beautiful or is it just broken?
You see, that placard represents my beautiful brother and his beautiful thoughtfulness but it also represents so much more. I survived one of my darkest seasons. Although I still feel the brokenness of his death and absence from my life, I AM HERE and I am so grateful for the time I had with him. I am ok and it is a part of my story, it isn’t perfect but it is beautiful. That season changed me, I am not the same person I was and that is ok. I found courage that I didn’t know I had in me, I found out that actually the human body can endure tremendous amount of pain and still survive even when it feels like you can’t. I also found that God surrounds you with the right people when you need them at the moment you need them. These are all invaluable lessons that have helped make me who I am today.
As you can see from the picture, it was glued back together carefully by my wonderful husband and it has lived on my walls in five different houses through many different seasons. There have been many seasons that have come and gone since that season and some very painful. There have been seasons where I have remembered to see the beauty in those difficult and unexpected seasons and then there are seasons of relearning, relearning to breathe and know that you will be ok. In these seasons, God has been so faithful to remind me of who I am and whose I am. Can you see my brokenness? Absolutely, I am still being put back together but not so I can be the same as before but so that I can tell my story, my Imperfectly Beautiful story.
We can’t always see the pain and heartache in each other that has shaped and made us who we are. We all have Beautifully Imperfect stories and it is no small thing that you are here to tell it. You have survived and maybe just maybe gained some invaluable treasures despite the pain and heartache along the way, I know I have. I don’t know what dark and difficult seasons you have gone through but they don’t disqualify you. They are a part of your story, just a chapter, not the whole story.
For the last couple of weeks, I have been thinking about the Israelites during the exodus. There have been many messages on the Israelites lack of trust in God’s faithfulness and I have often pondered it myself. How could you doubt God after having seen him part the red sea, protect you by a pillar of smoke/fire or feed you with bread from the sky? God had gone above and beyond what they could have imagined as slaves in Egypt. God wanted to free them and had freed them. They hadn’t reached their destination but God had set them free and they were being guided to there promise land. Why would they ask to go back to a place of slavery, a place that they were so desperate to leave?
Maybe they weren’t desperate to go back to slavery but maybe they craved familiarity, stability, and certainty. FREEDOM meant a lack of certainty, it was unfamiliar territory and most likely felt unstable at times. They didn’t have a home and they didn’t know when they would feel settled. They had seen God’s faithfulness but they were uncertain the FREEDOM was worth the cost. They were doubting whether God’s promises were worth it, whether God’s best was truly the best.
Have you ever found yourself in that place? Have you ever wondered if your journey to FREEDOM is worth the uncertainty and unfamiliarity? I know I have. FREEDOM doesn’t always happen instantaneously and we will always need freedom as part of God’s refining. FREEDOM is hard and we can become overwhelmed by the hard rather than God’s faithfulness. The challenge is to remain thankful to God in the process and to worship Him for the victories we have seen and the victories we have yet to see.
There was a really unhealthy season I found myself in years ago and when I found my way out of that season, there was a relief. However, the journey to FREEDOM and forgiveness was long. There was a choice that I had to make, I had to truly let go of that season even though there were many times I would reminisce about the good aspects of that season. In some ways, I wanted to go back to what had been familiar for years because there was a level of certainty but I knew that God’s plan for me was greater than what that season had provided. Even though there are some aspects of that season that at times make me sad and frustrated, I am proud to be on the other side of that season. The season of FREEDOM and healing that followed has helped me grow into who I am today. There is no way I would want to go back to that season or wish that I was still in it. The FREEDOM I experienced and the seasons that have followed are far better than any loss that I had felt.
FREEDOM is worth the uncertainty that you may be facing. It is worth the uprooting you may be experiencing. Ultimately you will get to the other side and you will confidently be able to say, I am so glad that I chose freedom over immediate certainty. Your journey is not by accident and God has a plan and His plans are good.
I love personal growth, reflecting on 2018 Megan and then seeing 2019 Megan. It has always been important for me to look for ways of how I can be a better me. It isn’t about comparing myself to others or contemplating my shortcomings. For me, it is about making sure I am not complacent with where I am at. We all have areas we know we need to grow in, they may be areas we would rather not address but we know they are there.
When I was eighteen there was a specific area that I knew God was challenging me on. When describing myself, I would refer to myself as a blunt person, someone who would always tell you how it was. I believed that this was a good thing, after all it was authentic. However, I knew deep down that it was a lack of self-control and a lack of empathy. People don’t always want to hear your opinion and often it is an excuse for being harsh and unkind. God challenged me to make that year about becoming more compassionate. Compassion was my word for that year and God was faithful. That year was a year where I learned so much about how to love people better and more importantly to keep my mouth shut. So every year since then, I have chosen a word to define my year.
During the month of December, I search my heart and pray that God will show me what he wants to do in me and my family for the new year. There has not been a year where I have been disappointed. There are many other people I have met who pick a word for there year and they agree that it has been one of the best practices that they have put into place. It is an opportunity to trust God and see His faithfulness as you seek Him in the word you have chosen.
So this year, I have chosen the word DETERMINATION. For many years, I have thought of myself as a determined individual, some people who know me really well might replace that with stubborn. However these last few years I have been really worn out. There have been some health issues that have really zapped my energy and on top of that, I have three young lively children with autism. I haven’t felt myself and have felt as though I lack follow-through. So this year is the year to regain that determination. This blog was part of my efforts to step out, believing I will be determined enough to stick with it.
Choosing a word has been such a valuable and life-changing part of my life that this year I also picked a word for my family and that word is JOY. As a family I want us to find joy in every season no matter how it may look. I truly believe that joy is easy to find in the happy seasons of reprieve and then sometimes it is just flat out deep down. It is so deep that you have to reach and dig through the muck to find it. It is so important to do the hard work of pulling joy out even in the most difficult of seasons. This is where we worship despite our season knowing that God is still good and so faithful. Seasons are that, just seasons. They only last until the next season comes. I want us to find joy in it all.
This year I thought this could be a good year to ask the kids to pick a word for 2020. I explained to them that they need to pick a word that they wanted to see more of in themselves this year. So Elijah decided he didn’t want to from the get-go. Esther was going on and on about how she wants to be a gymnast who also is a horseback rider. She wants Tom and me to work on a farm so that she can ride these horses. There is not a chance that you will find Tom and me on a farm. Then Moses said he wants to be stronger. I was thinking to myself, now we are getting somewhere. I followed up with, in what ways do you want to be stronger? He said, “I would like some kid weights, a treadmill and a bike that you ride in place.” So there we go! Elijah wants nothing, Esther wants to be a gymnast horseback rider and Moses wants to have a six-pack. I will let you know at the end of this year how it goes.
As for me, this will be a year of DETERMINATION and it will be the year of JOY for my family. I am determined to have better health this year and I am determined to step out more and take risks even with the possibility of failing. I would love to hear about your word for the year, please comment below if you would like to share. If you have never chosen a word for your year I would encourage you to try it out. It isn’t too late, we are still at the beginning of the year and there are some great things ahead for you in 2020.