Sebastian's Dream

Exploring & Discovering The Beauty In Autism and the Autistic Child

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With Each Passing Day.....

Posted on August 7, 2017 at 5:00 PM

With each passing day, Sebastian grew and got cuter and cuter! He started walking at 9 months which was great. It was super funny how it happened. One Saturday, Sebastian and his friend Katie were at the children's museum and at the time, Sebastian was still in the crawling stage. As Katie ran around the museum, Sebastian crawled through several spaces. At one poiint Katie looked down at Sebastian crawling as if to say, "Why are you down there? It's a whole different world up here!" You know the way children communicate in only a gesture, facial expression or words only they can understand. Sebastian looked at Katie and then at us, his parents, as if to say, "Why can't I do that?" After we left the children's museum and got home, Sebastian went straight over to the TV stand and stood up. Within days he was walking, within weeks he was running. That was the first time we noticed his huge competitive nature, something he comes by naturally, his father and I compete all the time. LOL! 

We were excited parents when Sebastian started walking. It was then we knew that he would be reaching new milestones fairly soon. By the time Sebastian was 2 he was speaking words and eating different foods and appeared to be on track for meeting his milestones. He was eating chicken, tacos, carrots, oatmeal, applesauce, biscuits and a variety of other foods. Until one day it all came to an end. I'm not sure why, how or when it actually happened, but it happened. 

All of a sudden the progress Sebastian was making came to a screeching halt. He stopped talking and eating all at the same time. I went into instant denial. My mother in law asked me one day if I thought Sebastian might have autism. She said he was displaying some of the signs of a child who may be on the spectrum. Again, instant denial. Right away, I said to her that was not possible, Sebastian just has a speech delay. It was inconceivable to me that this beautiful little boy that I had so many hopes and dreams for was suddenly stricken with something I knew nothing about. How could this be happening? Why was this happening? No, this was not really real. In my mind what she was saying was like listening to Charlie Brown's teacher, blah, blah, blah, blah, blah, and then I just shut down. I went on with everyday like things were normal with Sebastian. I refused to contact early intervention to have him evaluated, even though his pediatrician recommended I do so. She suggested it based off these forms that they give you concerning early intervention and milestones according to age. Your responses to the milestones and observations from the doctor, are used as idicators to determine if there may be some developmental concerns for your child.

Denial still. I didn't care what anyone had to say! My perfect boy was still going to Lab School, Walter Peyton or Latin and then entering the Ivy Leagues. Nothing was going to change that! I remained in denial until I got sick of being told I needed to have Sebastian evaluated. Reluctantly, I relented and had the early intervention team come out and evaluate him. Three therapists and a case manager came out to evaluate my boy. As they talked, I resented every word they spoke. They were liars and did not know what they were talking about. There was nothing wrong with my son and I wished everyone would stop telling me that he might be on the autism spectrum. It was not true! Don't misunderstand me, the early intervention team was professional and nice, but I just could not believe what they were trying to tell me about my child. They sat with Sebastian and tried to play with him using certain toys to see if he would engage and play with the toy "correctly". They tried to get him to say words and in some instances just merely observed his behavior. When they were done, they wrote their reports and told me they would provide there analysis and recommendations. When they concluded that they believed he was somewhere on the autism spectrum, I began to cry. They consoled me and told me that I was not alone and there were support groups that I could join, but I was not hearing any of it at the time because no matter what "they" said, all Sebastian had was a speech delay. 

I had Sebastian evaluated a second time at the University of Chicago at the urging of his pediatrician. I expressed my concerns because as a parent, I feel that therapist and the clinicians meeting with your child for a couple of hours cannot truly determine your child's capabilities. It infuriated me to think that someone was analyzing my child and making life decisions on how his life would be based on a 2 hour evaluation. Really! Nonetheless, I went to the evaluation and sat through another grueling 2 hours of therapists playing with and evaluating my son, only to get the same submation, which I still denied was real or true. Sebastian only had a speech delay. 

The third time was the charm, I had early intervention come out again when Sebastian turned 3 and endured the same process, only to be told the same things again. At this point, I knew it was time to give up the ghost. I cried as I looked at my baby. I thought about all the things he would "not" be able to do. I thought about how he might be teased and bullied from information and research I had read about children with special needs. Through my eyes his life was over before it had even began, but was it his life that was over or was it my life expectations for him that were over? 


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1 Comment

Reply LaDonna Raeh
1:01 PM on August 13, 2017 
It's so amazing how our children are so perfect no matter what. We ❤️ them and are blessed to have them in our lives!