“A Blessing in Disguise: My Son’s Journey with Autism”
Becoming a mom is the absolute best thing that has ever happened to me. Becoming a mom for the second time was just as uplifting, and I had never felt so blessed.
Any mom would know exactly that same euphoric feeling, right?
And any mom would understand that we would do anything for our children, no matter what, right?
And certainly, any mom would comprehend the feeling of the need to vehemently protect your children against all adversity.
A Love Like No Other…
When my son was born on April 28, 2000, he was perfectly healthy. Landon had the biggest, deepest brown eyes I had ever seen and a face that instantly melted my heart.
As he grew, every milestone was achieved on time. He cooed, smiled, made eye contact, and babbled. By the age of one, he still wasn’t talking, but he continued to make sounds. He wasn’t crawling, but my firstborn didn’t really crawl that much either; he went straight to creeping (taking steps only when holding on to something) and then walking.
By fifteen months, Landon was (finally) creeping and would say, “Momma.” I took note of how my close friends’ babies were talking in two- or three-word sentences, and were pointing at an object if they wanted it, but I told myself not to compare; all babies develop in their own time. At his fifteen-month check-up, I told the pediatrician that I was a little concerned that he was not yet walking or talking and he told me to be patient and that perhaps his older brother was talking for him.”
At eighteen months, Landon finally took his first steps and from that point on, he was a solid walker.
My husband and I had been working with him, and we were thrilled. He still wasn’t verbal, besides the word “Momma,” but he made his own types of babbling sounds and seemed very content. His lack of eye contact became quite evident. He could not point to an object, and certainly could not communicate with us about things he wanted, so we continued talking, reading, and singing to him like crazy.
By twenty months, he hadn’t made any progress in the talking department, and the temper tantrums began. Everyone talks about the terrible twos and how much of a challenge they can be, but his terrible twos consisted of banging his head against the floor or wall, or with his hands.
He grew increasingly frustrated because we could not understand what he wanted; Landon just could not tell us. He never seemed to be happy. This is when our family began speaking out about their concerns; they could see abnormal behaviors that I couldn’t really see because perhaps I chose not to. Members of my family mentioned autism and I just shook my head. I made an appointment with his pediatrician ahead of his next official check-up, in part because his dad and I were a little concerned, but mostly because the fervent worry of our families alarmed us.
What is Autism?
Autism is a neurodevelopmental disorder that encompasses a wide range of severity. This disorder is characterized by a few significant or intense behaviors that seriously affect the child’s life and the lives of those around them.
Since it covers such a broad range, or spectrum, autism is commonly referred to autism spectrum disorder, or ASD. This disorder, which has increased steadily and dramatically over the past few decades (many health professionals claim ASD is an epidemic), is characterized by social delays, difficulties in communication, and behaviors that are repetitive and limited.
According to the Centers for Disease Control and Prevention (CDC), from the years 1994 to 2005, the number of children receiving therapy for autism spectrum disorder rose from 23,000 to 194,000. That is huge. Autism has also been coined the single fastest growing developmental disability.
The pediatrician told us to wait until Landon was two-and-a-half to see if he would begin talking. His visit went well, apart from the lack of eye contact and talking, but the doctor told us to be patient and that all toddlers develop at their own pace. We left the doctor’s office that day feeling a little relieved.
But the relief didn’t last long.
At his second birthday party, we gathered at the babysitter’s house with the friends Landon spent his days with. It was very low-key, as the sitter only had three children she watched, including Landon.
When everyone sang “Happy Birthday” to him, he began to scream and cry. The little party favors the kids had made noise and Landon covered his ears and screamed. We consoled him the best we could, but he was miserable. The many balloons, the noise, the candles on his cake, and the singing just put him over the edge.
It was as if Landon was in pain, but once we got home to our quiet house, he acted as if nothing had happened. After this event, we began noticing that he would react negatively to any stimulating environment. Malls were a nightmare. A toilet flushing in a public bathroom would cause him to scream intensely at the top of his lungs. Grocery stores were touch-and-go.
At twenty-five months of age, I decided to talk to the speech therapist at the school where I was a teacher. I just knew something was off and of course, our families were very concerned (and very vocal about their concerns).
I had Landon evaluated, and the speech therapist recommended he begin speech therapy with her at the school. He officially began speech therapy a few days a week, and was quite responsive to the therapist. One thing she recognized, that we didn’t see as an issue, was his continuous repetition of words, known as echolalia. Landon would repeat common words; we thought this was just his way of learning to talk. She also noticed he had repetitive behaviors like spinning his hands over and over again, tapping objects on a surface frequently, and obsessively manipulating objects without wanting to stop.
As parents, we also had noticed those behaviors. At home, he would line up soda pop cans in a pattern on the floor, play with a spinning toy for hours, and do other odd types of play behaviors. We were a little baffled, but not concerned, as we thought he would eventually stop once he started talking and became more social. Our babysitter was quite impressed with the way Landon sat and put small toys into intricate patterns and how he would build complex creations out of Legos; she always showed us his designs when we picked him up.
Speech therapy continued, and we enrolled Landon in the preschool program at the same school. He qualified for the program, which was for special needs children, because of his lack of speech. At this point, he was only saying “Momma” and naming colors. That’s it. He would either repeat what we said to him, or just say color words. Not just any color words, but “magenta,” “turquoise,” and “dandelion,” in addition to the primary colors.
The turning point of my realization that something was not right was when the preschool teacher came to me one day after school. She told me that during song time, Landon would walk around and around in circles to the music, waving his fingers very close to his face, doing this repeatedly. I could tell by the look on her face and the urgency in her voice that she was troubled by it, and looking back on it, I realize that she probably knew Landon had autism, but just couldn’t tell me. As a teacher, I understood, as teachers cannot ever label a child with a term of disability; only doctors can.
My Intuition Spoke to Me…
We made an appointment with the pediatrician when Landon reached two-and-a-half. I explained to the doctor that all the behaviors Landon was exhibiting, and the fact that he still wasn’t talking, was very concerning to us as parents. We were talking to him nonstop: making conversation, reading to him, singing quietly to him – we were doing everything we could possibly think of to enhance his language development. After listening to us, the pediatrician recommended that we take him to a specialist, although he reiterated that it was still early, as he was only two-and-a-half, but if it would put us at ease, then perhaps we should consider it.
Under intense pressure from our families, and after talking to his preschool teacher and speech therapist, we made an appointment with a specialist in autism at Duke University Medical Center. Needless to say, I was on pins and needles for a month while we waited for the appointment; the word “autism” shook me to my core, perhaps because it was 2002, and at that time, autism in children was only 1:250. There was not much knowledge about it then like there is today. Stress was building in our little family because we were all scared. I had to focus on Landon; I had to remain focused on his five-and-a-half-year-old brother; I had to give my absolute all to my time spent with both boys.
A Day I will Never Forget...
We traveled to Duke University to meet with the specialist in autism spectrum disorders. Regardless of our being very nervous and anxious, the time spent there was not so bad. Landon was greeted by the doctor, who spoke with us and observed Landon’s behaviors. This was not your typical doctor’s appointment. This was an all-day event with a team of specialists playing with our son in the comfortable, cozy, large playroom. While the doctor observed, Landon sat in the floor and played individually with a speech therapist, an occupational therapist, a physical therapist, and an intern specializing in autism spectrum disorders.
At the conclusion of our time with these medical professionals, our doctor sat down with us and talked about autism spectrum disorder. He handed us several pamphlets, booklets, and even a DVD about this disorder. He confirmed our fears: our son most likely had moderate autism, and time would tell if he would talk, become potty-trained, or hit any other significant milestones.
I silently cried in the car for the three-hour drive home. I was confused, scared, anxious, and felt I didn’t know what to do next or where to turn. It was as if I had been punched in the gut. My husband didn’t seem as emotional as me, but he was. He just didn’t show it like I did.
Onward and Upward…
Landon continued preschool with an additional speech therapy session during the day, and we stayed on that course for about a month. I was in a state of confusion and fogginess. I was scared to read the pamphlets, booklets, and even more scared to watch a DVD on my son’s diagnosis. I would not type the word autism into Google Search on the computer. I was just too scared to face it. I don’t know if it was because I felt ashamed that he had autism, or if I had a significant fear of the unknown. It was probably both and so much more. I basically shut down emotionally. I went into somewhat of a depression and all I wanted to do was play with my boys when I wasn’t at work. I pushed everyone away, my focus only on Landon, and I knew I also had to focus on his brother.
After about a month, I decided to take action. I began to research this mysterious developmental disability, and began to ask questions. I read and read. I was determined to make this okay. Landon was not three yet, and I was going to do everything I could to make him be just fine. We enrolled him in supplemental therapy after school one day a week. It was animal therapy, and Landon worked with a professional animal therapist to help his speech and socialization. He rode upon and interacted with llamas, alpacas, and horses, with her guidance. Our whole family participated in his therapy; he played with bunnies, and rode in a wagon pulled by a Great Dane. We also enrolled him in occupational and physical therapy during the school day. I was actually beginning to feel like all my bases were covered in dealing with this, all the while pushing many friends, my husband, and even family away.
Early Intervention is Amazing…
By three, Landon was starting to talk. He was also potty-trained after much time and dedication at home and in school. By kindergarten, he was socially-inept with his peers, but was talking in sentences and actually reading. He was drawing pictures of intricately-designed objects and buildings in perspective, which fascinated everyone around him. His conversational speech left a lot to be desired, but he was coming along. He was in the special education program at our school, had an individualized educational plan (IEP), and still had his therapies during the day. Landon had made so much progress that we could dismiss him from the animal therapy.
At home, we used the many, many tools given to us by his teachers and therapists. We had a picture board, a bag filled with social stories, a routine that was as rigid as possible, and a consistent time-out plan for him when he misbehaved. However, his misbehaviors were not as often, as Landon could finally communicate with us. We learned ways to help him deal with loud noises, and made up a game of “covering the ears” when loud noises began. Toilet-flushing still petrified him so we avoided that as much as possible. We knew he could not handle a lot of stimulation, so malls were off-limits, as were any places with crowds and stimuli.
The good thing is that even though my son had autism, our next all-day appointment at Duke confirmed he had a very mild case, or what is known as Asperger’s Syndrome. The team of professionals at Duke was impressed with his progress. Although there was still an element of the unknown with all of this, progress was a blessing, and I knew we would do nothing but move forward. I felt like a champion, like I was conquering something against the odds, even though it was still quite evident that my son had social and emotional delays. With my continued focus on him and his progress, all my energy went to him and my other son, and my marriage was dissolving right before my eyes.
Today, autism spectrum disorder has a profound ratio of 1:50. I am not sure if this is because people are more knowledgeable and aware of the condition, or if children are simply being born with it more often. Today, Landon is 16. He is loved by many, accepted by his peers at school, and, yes, still has mild autism or Asperger’s. He is a gifted artist, a teenager with the biggest heart I know, and is extremely intelligent. While social situations remain very hard for him, and he doesn’t have close friends that he hangs out with outside of school, he is very close to his older brother. Yes, he is different; yes, he still obsesses over certain things that change from month-to-month; and yes, he has challenges that he is working to overcome.
They say all things happen for a reason. I have different feelings about this statement, but I know for a fact that if Landon didn’t have autism, he wouldn’t be Landon. He wouldn’t be him. He is perfect the way he is; he is loved; he has a bright future (wanting to be an architect and study languages); and he will move mountains. The fact that my son has autism, or Asperger’s Syndrome, is irrelevant to me. He is who he is, and the young man he is becoming is a true blessing.
If you have a child with a disability, no matter the severity or the type, focus on the positive and know that everything is going to work out in its own way. Educate yourself. Advocate for your child, and eventually, like my son, they will be their own advocate. All children are unique, and no child is better than another. You will find that your child has more strength and courage than you will ever believe, and he will significantly change your life…for the better.