Op-Ed: My Son Is Not His Autism, But His Autism Is Certainly A Part Of Him

Caio Lea
Caio Leaf

Emanuela Palmares
When my son Caio was 24 months and 20 days we arrived at the Yale Child Study Center in New Haven searching for answers. He was unable to express himself, meet some developmental mile stones, did not know how to play with his toys and only cared for lining them up or dumping them, made very little eye contact, and did not respond to me when calling his name.
After a two-day testing process we got some answers, that at the time, I did not want to hear. Caio’s language skills where at a 9 month old level, fine and gross motor skills lagging behind, that coupled with other behaviors, diagnosed him with Autism Spectrum Disorder (ASD).
ASD is characterized by:

  • Persistent deficits in social communication and social interaction across multiple contexts;
  • Restricted, repetitive patterns of behavior, interests, or activities;
  • Symptoms must be present in the early developmental period (typically recognized in the first two years of life); and,
  • Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have. Some children are mildly impaired by their symptoms, while others are severely disabled.
The latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) no longer includes Asperger’s syndrome; the characteristics of Asperger’s syndrome are included within the broader category of ASD.
Caio left Yale with a recommendation for intensive ASD intervention, speech and occupational therapy. I still wasn’t so sure and thought: “I’ts not drugs they are recommending, its just therapy, it can’t hurt. We will come back to retest a year from now and see how this goes.”
We received therapy through CT Birth to Three System that provides services developmental and health-related needs of their infants and toddlers who have delays or disabilities. Our providers was a team from Theracare , Kristi , Julie ,  Patty , Janine, and Ginette – these amazing women – delivered over 800 hours of therapy from January 2014 – May 2015. Paired with lots of love & support from our Millie his teacher at Hudson Country Montessori, my amazing parents Celia & Genilson Palmares, aunt Ana, Caio’s Godmother Angela Barbosa, his aunt Liz Bacelar, and uncles Eric Palmares, Victor Gomes, and friends like Fernanda and Stephen Scott, whose son Jaden, is Caio’s best buddy and always says ” Tia, Caio is so funny and silly. I like him Tia.”
This December, we were back at Yale for reevaluation. And to be honest, I dreamed of my son testing out of the spectrum, maybe it was all a miss understanding and all he need was more help for a little while to “catch up”.  We worked so hard. Out of the 800 hours of therapy, I participated in nearly 400 of them in my home and learned with the team how to teach my son, how to be his voice, decode his language, be his advocate, be tough sometimes and push him to reach his full potential, and teach him to ALWAYS say please and thank you.
Well, Caio made amazing progress closing the developmental gap thanks to our Theracare team (Or as I called them “Caio’s Angels” as in the TV series), but they were right, as I knew deep in heart as we worked more and more with the team, and I read more about it – my bright, gorgeous, fun, loving, caring child has Autism Spectrum Disorder and maybe will need help in some areas of his life forever. So I get to love him the hardest I possibly can with all of my heart, and work and fight for him to have every opportunity to be all that he can be, just like the parent of any typical child would. Because, Caio is not his Autism but his Autism is certainly a part of him and I love it all.
This holiday season count your blessings, tell your loved ones how much you love them, and know, as I learned this year,  that every challenge in your life is an opportunity to show you what you are capable of.
And please spread awareness about ASD for more info visit https://www.autismspeaks.org/. And if you can, please support: Connecticut Families for Effective Autism Treatment (CT FEAT) is a non-profit organization staffed by volunteers. They provide Connecticut families with information and networking opportunities visit http://www.ctfeat.org/donations.
 
 

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