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!