I keep playing and replaying this one song, “A Million Dreams” from The Greatest Showman soundtrack. First off, this soundtrack and the movie itself is so powerful. It’s honestly a testament to the importance and power of inclusion and as a mother of a child with Autism, all I want is a world of inclusion and acceptance for my sweet boy. Anywho, this song, “A Million Dreams” is really resonating with me this week because that is exactly how many dreams I hold in my heart and head for my Nico. I wish for so many things in life for him. Everything from him being fully potty trained to becoming a husband and father. His potential for greatness is infinite in my eyes so I dream and hope and wish on the daily for him.
We recently completed Nico’s evaluation for recommendation of services when he starts Kindergarten in the Fall. He will be attending our local public elementary school and I couldn’t be more excited, yet petrified all in the same instance. I wanted to start the evaluation process early so that school personnel could have ample time getting to know Nico and his mama (they will probably be seeing and hearing from me a lot…just saying).
I was apprehensive about the two-day evaluation, but also very hopeful because Nico has grown so tremendously since his diagnosis in 2015. We met with the psychologist, speech therapist, and one of the special education teachers. They were very welcoming and immediately began to pair with Nico. Nico was his typical self, gravitating to all the books he found in the room, inferring what each book was about without reading a word, reciting certain phrases from his own favorite books/films that he felt related to the new books, and being his quirky, sweet self. I melted when the speech therapist said, “I just love him” under her breath to me. That’s how I want everyone to feel about my sweet boy.
But, when they started to ask him questions and prompt him to participate in certain activities for the evaluation data my heart began to sink into my stomach. He was not responding appropriately. He had no interest in playing with the toy cars, could care less about drawing with the crayons, and pushed aside all of the developmentally appropriate toys the psychologist urged him to interact with. At one point, he became aggressive when the questions persisted and the encouragement to play with certain toys became too much for him. I immediately corrected him, mortified that they would think we allowed him to hit anyone.
In that moment, my whole perspective changed. I slowly realized that much of the progress that Nico has made might not be as grand in scope of age appropriateness as we have been thinking it is. Just saying this makes me so angry though. Nico’s made amazing progress and I refuse to believe it won’t be enough for Kindergarten, but sitting in that evaluation room, watching them feverishly take notes and glance at each other with silent feedback filtering between them I knew that our work must continue.
Once we finished the evaluation, the three of them did agree that Nico would definitely be recommended for services and that our next step would be to create an IEP (Individualized Educational Plan), where we would come together as a team and determine how many services Nico would need and how much time would be allotted to such services. They highlighted many of Nico’s strengths which included: a photographic memory, strong ability to infer, great problem-solving skills, and that he displays hyperlexic behaviors. Hyperlexia is a complex syndrome that can accompany Autism or be standalone syndrome, but what is so fascinating is that only 5 to 10 percent of children with Autism have hyperlexia. I love that Nico falls into this small percentage!
I left the evaluation with mixed emotions. Hopeful for what would come from the IEP meeting while also feeling paralyzed; maybe I will just home school Nico. I can be in complete control and not have to worry about how others will work with my child. I can only imagine what those three women thought once we left the room. Maybe they felt hopeful and thankful because Nico has amazing strengths and parents who have been doing all they can to help him progress. But, maybe they had a different perspective. Maybe the special ed teacher was nervous, exhausted thinking about how much work Nico will be on a daily basis. Maybe the psychologist felt concerned knowing that Nico is still not fully potty trained and can be aggressive. Maybe the speech therapist was apprehensive thinking about adding one more student to her caseload, knowing that Nico comes with complex needs.
However, what I choose to focus on is how much Nico will help transform the culture of his school. How he will encourage and motivate inclusion and acceptance. And I hope that his teachers and aids and support staff use him as a catalyst for change in shifting the mindset of anyone who has trouble accepting those who are different. That’s the perspective I hope this evaluation evoked.
I truly understand the power of perspective more now than ever before. I look at my son with such pride and hope and excitement. He never ceases to amaze me and even prove me wrong (I like to think that’s tough to do, but this stinker continues to do it). Autism has thrust me into a world of ever-changing perspectives and taught me to not focus on the status quo, but rather the extraordinary. With all of its challenges and hard work and sweat and tears, comes a world of wonder and surprise and endless possibilities.
I have come to understand fully that once we change our expectations and perspective, the world will grow and we will be celebrating more than grieving the childhood we hoped for our children. Autism has dramatically transformed my family and brought out the best in all of us. That’s the POWER of perspective right there!