Our son AJ was officially diagnosed with ASD (Autism Spectrum Disorder) on February 26, 2015, he was three years and seven months old. We began intervention around 18 months because we were blessed to have switched him to a new pediatrician who noted symptoms at his first visit with her. We were referred to an Autism clinic where we were given a consult on the steps to the path we would now be on, as he was too young to be evaluated for an official diagnosis. We were set up on a zero to three years home program and had weekly visits from Occupational Therapy (OT), Speech, and an educator. We enrolled him in extracurricular parent/child social classes, sensory, and music classes with other children also being evaluated.
Although he was not officially diagnosed we opted for every and any intervention we could sign him up for. Intervention was recommended for his noted delays, behaviors, and getting our foot in the door for services. We did this because if and when he was officially diagnosed there was a waiting list.
Some facilities had lists as long as two years to be accepted into the Autism program which was a big obstacle we faced with every facility we reached out to. We attended the facility we were referred to religiously for these interventions as well as putting his name on lists of other facilities. We finally were able to schedule a pre- Autism evaluation with our original facility when he was 34 months. He was evaluated by a psychologist who stated AJ was now exhibiting developing vocabulary, fairly good eye contact, emerging pretend play, and imitation. However, he also demonstrated several symptoms still consistent with ASD, these characteristics were sensory related behaviors, repetitive motor movements, preoccupations, as well as language delay with scripted and repetitive language. It was recommended he continue all his services, and transition from the zero to three years program with developmental preschool, outside Speech and OT services, along with continuing to participate in social opportunities a> theessayclub.com/ and classes we were involved with through the facility. Now we had a lot of information but still no official diagnosis, as his results indicated need for further more in depth evaluation. We began Autism parenting classes required to just be considered to be placed on the waiting list for this extended evaluation at this facility. That’s when things got real—words such as Autism, delays, challenges, obstacles, preoccupations, and repetitive to name a few these were now a part of our everyday vocabulary and observations of our child. He was not diagnosed with ASD, yet it felt like he was because all signs were now pointing to yes as we became more aware of AJ’s behaviors. AJ’s classes were social and fun for him but tough as a parent to see the older kids leaving their classes knowing one day that would most likely be your child. The parenting classes started painting the real picture, AJ fit in some categories, and others he didn’t fit at all and that’s when you learn that you know one child with Autism you know one child with Autism. AJ was finally scheduled for the in depth evaluation at the beginning of February 2015. He was evaluated at two different appointments lasting over 3 hours each and we filled out countless forms that asked about milestones and behaviors. That month seemed like years. Although we went in knowing it would be confirmed that AJ did have Autism, as a parent you still go in with hope. We brought a friend who stayed with AJ in the waiting room while we had our appointment as we lived in Seattle away from any family. The psychologist started with her pleasantries and how well AJ was doing and all his amazing attributes and then came the “but” he has now been officially diagnosed with Autism. I can still feel the grayness of the room the seconds those words were spoken as I sat next to my husband holding his hand. Those seconds were like having an out of body experience, getting a gut punch you knew was coming it just took my breath away, until my husband squeezed my hand those seconds seemed like a lifetime. In that moment as my husband says, “Everything changed, but nothing’s changed.”
Early intervention is key but any intervention is a must to help secure the future of our children living with ASD. ASD is a complex group of neurodevelopmental disorders that affect communication, social interaction, and repetitive behaviors in varying degrees. According to the CDC in 2014 and 2016, ASD affected 1 in 68 children, and boys were four times more likely to be diagnosed than girls. The gender gap had decreased from 2012 which boys were four and a half times more likely to be diagnosed with ASD than girls. A recent survey by the National Center for Health Statistics in 2018 showed ASD affects as many as 1 in 59 children, however it has been noted by Autism Speaks Chief Science Officer Thomas Frazier that 1 in 59 still reflects a significant undercount of autism’s true prevalence with estimated rates varying among states. The new estimate from 2018 represents a 15% increase nationally due to increased awareness. There is no known cure, but there are opportunities for bright futures with early intervention.
AJ is a brilliant, fun-loving boy who has taught us so much in his seven years. He loves art, music, swinging, spending time with family, he has an amazing memory, a great sense of humor, a heart that is so pure and loving, and dreams one day of becoming an oral surgeon and having a family of his own. It goes without saying he is a busy guy with school, therapies, camp, multiple extra-curricular programs, and just being a seven year old. His interventions have been nonstop since he was 18 months old and his overwhelming progress is pure evidence of the importance of early intervention. He attends public elementary school and is in second grade general education with an educational assistant. He has resource for an hour Monday through Thursdays and Speech and OT for a half hour once a week during school. He attends Applied Behavior Analysis (ABA) six days a week for a total of 18 hours. He attended developmental preschool at the age of three and entered general education kindergarten with the LIFE program as a resource along with a one on one educational assistant. We were told they would include him as much as possible but to expect about 10% in the general education class. AJ spent 90% of his time in his general education class from day one and has continued to since then. This obviously has come with all his hard work at school and after school with outside speech, OT, Autism camps, social classes and everyday living. We expose him to life just as we would have had he never been diagnosed. Some things can be more challenging but with patience and time, obstacles always seem to be overcome. He travels well by plane, train, and automobiles. He loves going to events and sometimes uses headphones for louder functions but is also phasing that out. We go to dinners, social functions, grocery stores, Disney you name it and do just as any family does day to day. He is simply just like a typical 7 year old boy who approaches social situations a bit different and sees the world in its literal sense. He has participated in sports with other children with Autism and related disorders such as baseball, soccer, football, and basketball. He enjoys the socialization more than anything as his coordination has been a challenge but as he grows, gets stronger and works with OT he is improving and enjoying playing more, he has an interest in tennis at this time. His biggest challenge, as ours, has been his attention deficit hyperactivity disorder (ADHD) and inability to sleep, which can both be common in some kids with Autism. He has had a sleep study and psychiatrist evaluation and care and now sees a neurologist for his sleep or lack thereof and his ADHD. It’s all a work in progress with progress being the key word, AJ has come leaps and bounds and the sky is the limit as it is for any child. Our role in all this has first and foremost been to be his parents, each others’ supports, and his advocate in anything and everything. With AJ’s Piece of the Puzzle we hope to be educators, philanthropists, and a voice to bring more awareness to Autism, and little help for those in need.
Today, AJ would like to give back and help provide some of his peers with ASD the opportunities he has had. We are asking you to donate to “AJ’s Piece of the Puzzle” to help him do this. We have raised money for AJ’s Piece of the Puzzle over the last couple years through other 501C3 charities, choosing two programs to donate our raised funds to that AJ was a part of. We decided it would become a lifelong passion of ours and incorporated our own 501C3 (Tax ID #833477766) to allow us to distribute micro scholarships to other children with ASD to allow them the help to obtain services they may have never had the opportunity, to participate in programs such as ABA, speech, occupational therapy, vision therapy, sports, camps, and countless other interventions. We have had countless physicians, therapists, teachers, educational assistance, coaches, volunteers, family, and friends be a part of these intervention as it takes a village and undoubtedly each of those people are priceless to us. We have been blessed with the capability to provide all his needs in order to obtain critical, early, and ongoing intervention. Unfortunately, not all children and their families have this good fortune, knowledge, or support. The programs that provide these interventions such as schools, therapies, camps, classes, or any extracurriculars specified for children with ASD are always in need of materials, equipment, and funding to help keep them available to the ASD community. We will work with other charities in the ASD community and provide opportunities for the invaluable volunteers in most of these programs with micro scholarships to attend educational, recreational, and other programs involving children with ASD. We have interacted with all walks of life when it comes to the parents with children with ASD as it does not discriminate. That being said it could be something as simple as a gift card for gas to get their child to appointments, micro scholarships for help with computers to help their child learn and communicate, to buy sensory toys, sensory outfits, GPS watch for kids that wander, a> theessayclub.com/ the list goes on as our goal is anything to help aid a child with ASD and their family with opportunities they may not have. AJ’s Piece of the Puzzle 501C3 charity is our personal effort to teach AJ the importance of philanthropy and pay it forward to a community that has so much room for more awareness, education, and intervention. Your support and donation are greatly appreciated as well as providing you a tax write off for paying it forward. Please check with your employer as many businesses will match donations to such causes attached to a 501c3.
We thank you whole-heartedly for your generosity in supporting “AJ’s Piece of the Puzzle” and helping him shine his light on Autism.
With hope and appreciation,
AJ, Janel, & Tony Nucci