Story of hope by mom
My sweet, little Max just turned six years old in October. He is the light of my life and can always make me smile on any given day. He definitely keeps me on my toes and there is never a dull moment in our house with him. He loves traveling with his family, riding his bike, drawing rollercoasters, playing with playdoh, wrestling with his little brother, going to Lagoon, and swimming. I love him more than words could ever say and in my eyes, he is perfect. Here is his story.
Max was born on October 12, 2006. He was our firstborn and my husband and I were so thrilled to become the new and proud parents of this sweet baby boy. Max was born with all ten fingers and toes, and I remember the doctor saying seconds after he was born, ” Congratulations. He’s perfect.” It nearly took my breath away seeing him for the first time, and I remember feeling such a feeling of complete happiness in that moment. We left the hospital and we were officially parents. Real life set in. Max was not what you would call the easiest baby after those first few weeks of being home. I remember taking him to the doctor on Halloween only to hear that nasty phrase from the doctor, “He’s probably just got a little colic.” Great. The doctor gave us the usual tips and ideas of how to calm and soothe him but nothing ever seemed to work. I was exhausted and my heart was breaking every day from a screaming baby that I couldn’t ever seem to make happy. For four long months, we dealt with days filled with endless screaming and many sleepless nights. Finally around the time Max was five months old, the heavens must have opened up and sent angels down because the colic was finally starting to disappear little by little. We were finally starting to experience what it was like to have a happy, peaceful baby. For the next seven months after that, Max was a dream. I would take him everywhere like a proud little mommy, and people would constantly comment on what a happy, playful little baby I had. My heart was starting to mend from those four long months of screaming and I was starting to feel like maybe I wasn’t a complete failure at this whole “mom thing”. Max had just started saying his first words and I was so excited to be planning his first birthday party that was coming up soon. Life was so normal and felt so good.
Around the time Max was fourteen months old, some major changes had started happening in his life and in our home. Within a matter of weeks, Max had lost every word in his vocabulary. He was now not saying anything and would make a grunting noise or cry to try and communicate with us. I brushed it off not knowing any better. He then lost all eye contact. I remember having to constantly grab his chin when I would talk to him to get him to look at me. He became obsessed with certain toys and activities. He started carrying around 2 matchbox cars with him every day. A green car was always in the left hand and the blue car was always in the right hand. He would carry them around from morning until night. He started this stacking madness in our house. He would sit and stack diet coke cans out of the fridge or cans out of the pantry for hours at a time. And of course, the crying, the screaming and the tantrums started all over again. There were days where he would cry and tantrum for hours upon hours. Since there was no communication between the two of us, I felt helpless. I didn’t know how to talk to him. I didn’t know how to help him. I didn’t know how to comfort him. I was so baffled that within a matter of months, he went from being this happy personable baby to a screaming, unhappy toddler. I was secretly devastated and my heart once again was breaking because I watched him every day slip farther and farther out of our world and into his own.
My mom was the first person to ever mention the word Autism to me when Max was around eighteen months old. I remember saying to her, ” That can’t be Max. Those kids never learn to talk and they rock back and forth all day. That’s not Max.” Even though I had shut the idea of autism down so fast, I was secretly intrigued. I figured it wouldn’t hurt to research it a little more because at this point, I was becoming desperate. After Googling and researching a little more, it didn’t take me very long to realize Max did indeed have a lot of similar traits and characteristics as other kids with Autism. I think I was still in denial, but went forward in getting the name of a well-known children’s psychologist in Salt Lake City to meet with Max and me. The morning of his appointment I was a nervous, frantic wreck. I remember waking up early to pick out and iron Max’s outfit. I put him in his Sunday best thinking that if I could get him to look perfect, things might go a little differently in that doctor’s office. Desperate, I know. We walked into that office, the doctor asked a bazillion questions, watched Max for about ten minutes and turned to me, looked me right in the eye and said, “I’m sorry about your son, but he has Autism.” Words cannot describe what a blow to the head and the heart that simple and short little sentence was. He proceeded to tell me that my chances of Max ever talking or communicating with me were slim to none and to mentally prepare myself that Max would most likely be dependent on my husband and I the rest of our lives. My head was spinning, Max was crying to get out of the room and I once again was feeling completely helpless. The doctor began to give me list of contacts for different kinds of therapies and doctors that I needed to start Max in right away. He also explained to me that insurance in the state of Utah covers nothing that has to do with Autism. With that said, he smiled, told me good luck, and shoved me out into the cold dark world where I had never felt more alone and confused as to what was really happening, and what was about to happen in the years to come for Max and our family. I jumped right in, finding Max therapies and biomedical doctors and at the tiny little age of two years old, my sweet Max started an intensive in-home Applied Behavior Analysis program ran by a private company with three main instructors 30 hours a week. Soon after that we started feeding therapies, biomedical therapies, chelation, GFCF diets, SCD diets and many more different things. Life at that time was hard work and there was never a day that wasn’t exhausting with all of the different methods and treatments we were trying with him. Within six months of ABA therapy, Max started communicating again and started saying a few words. We were thrilled. Within a year, Max was saying sentences. He was learning to how control his behavior. His eye contact was coming back, and his bizarre obsessions were slowly diminishing. The things we were doing were working and we were slowly pulling Max out of his little world and back into ours.
To this day, Max has done and continues to do his intensive in-home ABA program. I consider the changes he has made in his life a small miracle. At age five, we were able to integrate him into a public preschool with typical peers his age. He did amazingly well, and we then had the green light to integrate him into a public Kindergarten class which he will graduate from this coming June. He doesn’t stop talking most days and I can’t help but smile as I write that. People who don’t know Max are blown away when I tell them he was diagnosed with Autism at two years old. He is a completely different little boy from those days of no eye contact, stacking cans and screaming all day long. He has friends whom he has regular play-dates with. He can read unbelievably well, and no one who doesn’t know Max would ever guess in a million years that he has Autism. Life is still not perfect and never will be. I realize that we still have a long road ahead of us with Max. We still have a lot of work to do with him, but we are beginning to see the light at the end of the tunnel. We still have some really hard days with him, but those hard days are usually quickly replaced by great days. I am so proud of my Max. He deserves to be where he is today because of the hard work and time that his little body and mind have put into his many therapies over the years. We have been down a long road together these last six years of his life, but I am grateful that we have been able to do this together holding each other’s hands along the way. There is not a day that goes by that I don’t wish that things could be different for him. And, there is not a day that goes by that my heart doesn’t break for him for these last four years of his childhood that were stripped from him to do all of his different therapies. However, it’s in these moments that I must remind myself of how blessed our family has been in his progress. We truly have witnessed miracles in our home and for that, we push on and we keep working for Max. I am grateful I have had the opportunity to be his mom and I am grateful for the many life lessons I have learned with this experience. It has taught me humility. It has taught me patience. It has taught me that nothing great in life comes easy. Max is such an amazing little spirit in my life. He is, and will always be, my little hero.
Morgan and I met two short weeks ago. Our husbands work together and they kept telling us we HAD to meet. I now know why. Morgan is the type of girl who becomes an instant friend. Easy to talk to, warm, and obviously holds an enormous love for her job as a mother. She loves her two boys and it is clear that no crushing words of a pediatrician or the sadness she felt would or ever will diminish her unconditional love and admiration for these two. I love near the end when she talks about the lessons she has learned from this experience: humility, patience, life takes work. It seems these stories all share a common theme, the growth of the child. The growth is neither the same rate or level, but growth nonetheless. But we would do well to follow Morgan and allow our own selves to grow amid this journey with autism. We too can become our best selve if we do. Thank you Morgan, and thank you Max.
Oh and how about those pictures?! Could they be any cuter…not likely.
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