Peter was born on May 14, 2009. He was a healthy baby, weighing in at a whopping 10 pounds, 4 ounces! The staff in the hospital nursery, unprepared for such a chub, had to scramble to find diapers and onesies big enough for him. He was a little jaundiced, so he got to spend time wrapped in a “Bili Blanket” looking like a little blue glowworm:
The Early Months
From the start, Peter was different from his older brothers. He was a fussy eater, and he seemed to crave constant motion. Being held did not calm him; only when we paced the floor with him in our arms did he relax. After a few months, we learned that he was happiest facing outwards while we held him and walked around. It was as if he had to see where he was going.
We began to notice other things that didn’t seem “quite right.” While he would mouth toys constantly, he didn’t play with them or explore them in the way our older boys had done. He would laugh and coo occasionally, but it took a lot of effort to engage him. Even when we managed to catch his attention, his eye contact was minimal.
I began to do some research. I am a medical librarian, after all, and I could sense that something was wrong with Peter. This was the first time the term “autism” came up. I read about the condition and kept it in the back of my mind as we continued our daily life.
At around Peter’s first birthday, we brought up our concerns to his pediatrician at a well visit checkup. We said that Peter didn’t seem to be meeting milestones; he wasn’t babbling, he wasn’t sitting up on his own, he wasn’t interacting with us much, and he wasn’t exploring his world. The doctor, having known us since the birth of our first son in 1999, immediately jumped into action. “If the parents think something is wrong,” he said, “they are usually correct.” He agreed that Peter was exhibiting a developmental delay.
To rule out physical and neurological conditions, Peter underwent an intense and stressful period of testing, including:
- Vision Screening
- Hearing Screening
- Orthopedic Screening
- Genetic Testing
We dragged the poor little guy from clinic to clinic, hoping that nothing terrible was discovered, but hoping at the same time for an explanation for his delays. All of the results were normal, however, aside from a small chromosomal microdeletion in the genetic testing that was later ruled out as being irrelevant.
At this point the pediatrician suspected autism, so the next step was to get Peter on a wait list for an Autism Screening. We were warned that South Carolina has a long wait list for autism screenings, and that it could take up to a year! This was cause for panic, because everything we had read about autism stressed the importance of early intervention. However, because the pediatrician was able to diagnose developmental delay, he referred us to BabyNet, South Carolina’s interagency early intervention system for infants and toddlers under three years of age with developmental delays.
Thus began a never-ending cycle of therapists in and out of our home. Beginning when Peter was about one year old, he received the following therapies, weekly:
- Physical Therapy
- Occupational Therapy
- Speech Therapy
- General Early Intervention
We were grateful that Peter was able to receive these intensive therapies. They continued for several years, until he turned 3 and was able to enroll in the public school system.
The Autism Diagnosis – Age 2
In March of 2011, a few months before Peter’s second birthday, we were finally able to have the autism screening. Remarkably, he was screened by two different groups: a Developmental/Behavioral Pediatrician and the CARE Team (Carolina Autism Resource and Evaluation Center). Both resulted in the diagnosis we expected by that time: AUTISM. Later that year, in July, Peter was screened by a Licensed Clinical Psychologist as required by insurance. The diagnosis was the same.
It’s hard to recall how we felt when we were officially told what we already knew. Until then, there was hope that Peter’s delays were caused by some physiological issue that could be “fixed.” When we were finally told, decisively, that Peter had autism that was fairly severe, we were numb. We thought we were prepared. Still, it was hard to hear.
Remember the blog post my sister wrote the day after Peter was born? After she learned of Peter’s diagnosis, she posted this: Revisiting Room 404.
At the recommendation of the developmental pediatrician, and after doing a lot of research, we enrolled Peter in an Applied Behavior Analysis (ABA) program. ABA therapy is the only therapy that has been clinically proven to improve outcomes for children with autism. This intensive therapy requires 30-40 hours per week. It’s a full-time job for a child.
So in May of 2011, a few weeks after Peter turned 2, we had the Initial Workshop (a day-long training session for the entire family) with a local ABA provider. This took a LOT of effort to set up. Learning about ABA, the terminology, the methods, insurance coverage, etc. was incredibly complicated. I kept careful notes on the process and wrote a Cheat Sheet for parents that you can read here: ABA Therapy Cheat Sheet for Parents.
If we thought the Early Intervention weekly therapy sessions disrupted our home life, we were in for a rude awakening. Peter had ABA sessions daily, anywhere 3 to 6 hours depending upon the availability of the line therapists. We set up our play room to be his “therapy room,” but the nature of the programs allowed them to move around the house to different settings. It was a big adjustment for everyone, especially to our older boys who enjoy their privacy.
The family adjusted to the situation, though, because there really was no choice. Over the years, the benefits to Peter were immeasurable. Small steps were cause for celebration. At the start, he didn’t know how to play with toys and could not communicate. After a year he could complete puzzles, matching, sorting, identifying letters of the alphabet, etc. Not only was he learning typical “academic” stuff, he was learning to interact more with people and his environment.
Age 3 – Public School
Peter continues ABA therapy to this day. The setting changed, however, as he got older. When he turned 3, he was allowed to enroll in a special needs program in a local public elementary school. He was in a preschool “autism classroom” with 3 adults (one main teacher and 2 assistants) and anywhere from 3 to 8 students. He received weekly Occupational, Physical, and Speech therapy sessions through the school. After a full day of school, Peter had 3 hours of ABA therapy at home in the afternoons.
Peter stayed in the autism classroom for three years. He had a new teacher and new assistants each year, and sometimes the assistants changed over in the middle of the year. The high turnover rates for special needs teacher positions is understandable, but the change is not easy for children with autism. Peter had good days and bad days. We became increasingly concerned that he was not meeting his IEP goals, and his behaviors were becoming more and more difficult. At the end of his third year at the school, when Peter was 6, there were 10 children with vastly different behavioral and developmental problems in his classroom. From what we could see at drop off and pickup, it was total chaos in there most of the time. This was not the ideal environment for Peter.
The Autism Academy – Age 6 to present day
During the summer of his 6th year, we enrolled Peter in the Autism Academy of South Carolina, a nonprofit organization offering individualized ABA therapy. This program, which was created locally, did not accept Medicaid. At first we didn’t think we could afford the fees. It turned out, though, that my private insurance covered 80% of tuition, so we decided to give the Academy a try.
Peter seemed to flourish that summer, and with the new school year looming in the near future, we made a tough decision. We pulled him out of public school and enrolled him full-time at the Academy. This involved a lot of meetings with our public school district, and it also involved enrolling Peter in a home school program since the Academy is considered a medical treatment facility, not a school.
Peter is still full-time at the Academy to this day. We are convinced it was the right choice for him. He receives ABA therapy all day, every day (7 hour/day), he is able to interact with peers, he is learning social skills, his behaviors are under control, and he is doing very well in his educational programs.
Sign Language: A big component of ABA therapy is communication. Peter had been receiving speech therapy but at age 2 still had not uttered a single word. The ABA program introduced “manding,” which is a way of requesting. They began with sign language, and though he seemed to understand the concept, his low muscle tone and spatial awareness issues prevented him from making precise signs. We ended up having to modify the signs to enable him to be successful, but then they were not recognizable to anyone but his family and therapists. We determined that sign language was not the way to go.
PECS: With the help of Peter’s Speech Therapist through the school system, Peter started with the Picture Exchange Communication System (PECS) when he was 3. This is a structured program involving laminated pictures. The child gives a picture of a desired item to a communication partner in exchange for that item. The phases of the program become more complex as each one is mastered. The photo below shows a full sentence.
Peter did extremely well with the PECS system. After a time, though, I had misgivings. The program is very noun-heavy, and as a result Peter could ask for an item with no difficulty. He could even string together a sentence. However, he was not interacting in meaningful ways other than to request items. He was not using PECS to socialize. Not to mention I spent hours printing and laminating 2 x 2 pictures and adding them to his huge binder, the one he had to carry around with him everywhere! I must have spent a fortune on Velcro! I presented my misgivings to the Speech Therapist and, surprisingly, she agreed with me. We began to explore other options.
Peter’s “Talker” – AAC Device
We began to research high-tech devices designed to help people with special needs to communicate. Eventually we settled on a program called LAMP Words for Life, based on the Unity language system, which is used around the world to enable independent communication for people with disabilities. The system can be installed on a dedicated communication device, such as the Accent 1000, or it can be purchased as an app and loaded onto an iPad. We have both options. Medicaid covered the cost of the dedicated device (after many, many months and ten tons of paperwork). We bought the app as well and loaded it onto an iPad mini because that’s a lot more portable and cheaper to fix. This is what Peter’s Talker looks like:
What’s the verdict? This program was definitely the way to go for Peter! Finally, we found a way to truly hear his “voice.” (With a large selection of voices to choose from, we found one that we think would sound like his own voice.) Though the system is fairly complex (honestly, it scares a lot of adults!), he can learn where words “live” after being shown just once or twice. Here is a link to a YouTube video showing Peter using LAMP for the very first time… he learned to request “cookie” and “cracker” in about a minute!! Peter Using LAMP for the First Time
If he is motivated for something, he can ask for it. He has learned to answer basic questions like “What is your name?” and “Where do you live?” and “What is your phone number?” and he has learned to identify people (the program is editable and allows the import of photos). Currently he is learning to use his Talker to answer questions in a more natural back-and-forth manner. He has a long way to go, but he has already come so far! We are very pleased with the progress he has made in his communication.
Our life would be so dull without Peter! He brings joy to our family. He is generally happy and there is nothing sweeter than his little giggle. He is constantly in motion, loves to jump, and really likes to make messes! He likes to wrestle on the floor with his Dad and brothers, and lately he has become more cuddly, reaching out to hug us and snuggle up. He loves his iPad and Kindle (he’s amazing with electronics!), he’s happiest with noisy light-up toys, and he enjoys going to his favorite places in the world: Publix, Target, and Arby’s.
I will not write a section here about the future, because that is unknown. Peter’s future is a big scary question mark. All we can do is prepare him as best we can for whatever life may hold for him.