O ur name tells this story…Avergan…it’s a combination of our children’s names. While only one of our children was diagnosed with an Autism spectrum disorder, the other was the reason we identified there was something special about our son.
When our daughter was just four months old, she started missing developmental milestones –the twins were premature, so we expected that could be the cause — but it was also determined she had torticollis. Her neck muscles on one side were shorter than the other and it made it difficult for her to be on her tummy and almost impossible to roll over. We were referred to the Anne Arundel County Infants and Toddlers program, where we started receiving support — physical therapy and special instruction.
As our daughter got older, she did start to progress, but we still had those county services in our home to continue to ensure her development. During this time, we had started to notice differences between our daughter and son. While our daughter seemed to be a happy child, our son often got upset — at bath time, when the car would stop at a light, when the stroller would stop while we were shopping and even when his sister would “mess up” his perfectly lined up play cups. He started talking with words like “Ma” and “Da” when we’d walk into his room, but then stopped. He seemed to be in his own little world most days. I remember the day that I pointed out to the special instruction teacher, that I was worried about our son. She said simply, “Let’s have someone take a look.” Uh-oh..color me scared.
At first, we went to a workshop the county had about Sensory Processing Disorder. I filled out a worksheet the night before and remember answering every question with “YES”. I thought, whew, this is okay, we can handle this! Then, while my husband and I were at this meeting, I remember the teacher saying that, “Not all kids with SPD are on the Autism Spectrum, but every kid on the Autism Spectrum has some form of SPD.” Hmmm…that was an eye opener. I had never entertained the thought of Autism. It seemed like this big huge word that meant everything and nothing at the same time.
At this point, our son was 18 months old. We enrolled him in the TEACCH program through Anne Arundel County, where he attended “school” 3 days a week for a few hours. We also started the process of getting an official diagnosis, through the county and we also lucked into an appointment with a private developmental pediatrician. (Lucked into, because we were on the waiting list at Kennedy Krieger – 6 months estimated wait – and a few other locations. We got a cancellation appointment with a doctor at Mt. Washington Hospital in just a few weeks!)
I started reading everything I could get my hands on…books about SPD and books about Autism. I subscribed to websites that would send me information about breakthroughs for Autism. I ordered the cookbooks for Special Kids with Special Diets (gluten and casein free). I had stacks of books, papers, pamphlets and more. I created a binder for our son that detailed his entire life, including milestone dates, reports from every TEACCH class, and my own observations. I felt like this was my way of doing something during a time where I felt like I could do nothing.
Our family was having a hard time accepting that Autism might be in our lives. I heard everything from, “Oh, he’s just a late talker.” to “He looks at you and he smiles, I’m sure he’s fine.” Even our regular pediatrician dismissed our initial concerns too. But, I had this feeling…this feeling that something was different for our son. He started looking out the side of his eyes at things as he would walk by. He would flap his arms and walk on his toes. Too many things were starting to point to only one direction.
By the time we received our son’s first diagnosis, we had been through days of testing and had been waiting, not-so-patiently, for the results. I will admit, that by this time, I already knew what the outcome would be. And, when our developmental pediatrician said, “Your son has PDD-NOS: pervasive developmental disorder – not otherwise specified.”, I said, “Okay.” The doctor looked at me and said, “You don’t seemed surprised.” I said, “No, I have read so much, that I had diagnosed him myself.” He just nodded. He went on to discuss the diagnosis and said, “I can’t tell you what your son will be like when he is a teenager.” I said, “You couldn’t tell me that even if he didn’t have this diagnosis either.” So, that was day one with THE diagnosis – he was 20 months old.
We also received a second diagnosis from the county, which placed our son on the Autism spectrum also. So, now, it wasn’t a fluke.
My husband and I agreed that we wanted to do everything we could to ensure that our son had the best possible life he could have. We kept him in TEACCH classes and had services in our home too — physical therapy, occupational therapy, speech and special instruction — all through the county. We did look into private services too, but it ended up being too costly for us. We loved our county educators and felt our son was progressing.
Our son thrived on routine and schedules and he was very visual, so we continued his picture schedule from school at home. We taught both children sign language — especially the signs for “more” and “enough/all done”, since our son was still non-verbal. We also worked on sensory issues — he loved to jump into the sofa cushions and swing. He liked big bear hugs and would run into you all the time. Somehow, this seemed to keep him “centered”. To this day, he will lean on you…when standing or sitting!
We had a big breakthrough one day. We were sitting in the family room with our special instruction teacher from the county. Our son had this placemat with the number 1-10 shown in big, bright colors. He would point to each number and expect you to say the number to him. So, he’d point to one…wait…and then I’d say, “one”. We’d continue over and over. That day, the teacher said, “What happens if you don’t say the number when we points?” I said, “Well, he usually gets mad and cries and I try to avoid it and just say the number.” She said, “Don’t say the number this time.” So, we started at one and got to four. When he pointed to the number 5, he waited…and waited…and so did I. Finally, he blurted out, “FIVE”. We were all shocked….amazed…excited!!! What a day!
Over time, days, stretched to weeks and months and we were to the point where our twins were ready to attend pre-school — three years old. His TEACCH educator felt he was ready to attend regular pre-school, but we still had all county services coming to the school, as well as home. Our son did well, but we decided to repeat the pre-K 3′s for a second time. This year ended up being the best decision we ever made. The progress he made in that extra year was substantial.
By the time he moved to pre-K 4′s, he would tell you all the president’s of the United States in order, along with fun facts. He played nicely with other kids at school. He was obsessed with Thomas the Train and could identify all trains on sight. He loved Thomas and at times, watching those videos or playing with trains would calm him considerably. I think this was the first time I started to see imaginative play. Big step!
By the time our son headed to Kindergarten, the county decided he was ready to fly on his own. We were scared, but hopeful. We kept his diagnosis to ourselves, because we wanted to see how things progressed. It was the right decision. He flourished. Joy!!!
Every six months, we went back to our developmental pediatrician and every time he seemed amazed by his progress. The fact that he played on a soccer team at age 5 and was doing tae kwon do, was almost startling to him. He talked to our son and carried on wonderful conversations. Our doctor looked at us at one appointment and said, “I’ve seen thousands of children with Autism spectrum disorders come through my doors and this type of progress only happens to a handful of children. I wish we could bottle your son’s success and give it to the others. I think it is time we have him tested to see if he is still on the Autism spectrum.” That was the day that I could breathe again.
To be honest, we never got the “new” diagnosis. Partly, because of the cost (over $2000, not paid by insurance) and partly because we don’t need to know the answer. We know our son has come so far. We know that early intervention was the key. We know that we couldn’t have done it without the county services we were provided. We know that the amazing teachers that worked with our son were our blessings. We know that we love our son, no matter the diagnosis. We know we are the lucky ones. We know we want to help others.
We are Avergan Foundation.