So in 2010 life was taking many different twists and turns as we prepared to welcome our second child while our first was being diagnosed with Autism. We tried to figure out what these new 'adventures' meant in our lives. We never really discussed what Johnathan's diagnosis meant to our family and if it would effect the way we would parent. When Charles was born in September of that year we became parents of two boys and we prepared to find our new normal.
I'm not sure in that first year if we ever even talked about what we would do if Charles was autistic too. There were differences in the boys from the moment Charles was born. Johnathan always liked to cuddle and being wrapped in his blankets. He slept best held in the arms of a loved one and loved to nap. Charles was the opposite - he was not a cuddler and hated to be wrapped in a blanket. When we'd try to swaddle him he'd whine and move until he freed himself of the blanket. While thankfully he slept through the night he was up a lot during the day and when I'd try to get him down for naps it did not take long before he was up again crying to eat.
We wanted to make sure we were more conscious of any possible delays with Charles. We started with early interventions much sooner when we noticed some delays. Charles did not gain many words and instead would just make sounds and he had some fine and gross motor skills that were also delayed. Charles began to receive speech therapy and developmental therapy services. We were so happy with the DT that had worked with Johnathan also worked with Charles. Seeing many of the same activities that Johnathan had done being used with Charles was very interesting. The way Charles approached the activities and seeing him have 'appropriate play' gave some relief to my concerns. We were blessed with a fantastic speech therapist that came to the house once a week to work with him. She loved working with Charles and was able to identify that much of Charles' speech issues was due to apraxia. (Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.)
When Charles was between 2-3 years old we began to wonder about some of these delays and missed milestones that we were noticing. We had found many autism resource websites and took an assessment tool questionnaire. We were relieved when most of the statements didn't seem to match the 'areas of concern' for autism. As a parent who had a child diagnosed early and one diagnosed later I want to say I hate questionnaires like the ones we did. My experience is you either overthink the questions stressing about every behavior you see or you try to reason with yourself that you aren't seeing any signs and your child just has 'quirks'.
Perhaps in a way it seemed we wanted to deny that Charles could be on the autism spectrum. Truthfully that was not what we were doing. We really didn't see major indicators that he was. We felt that his speech delays were the main issue of his delays and we were getting services to address it. Charles was our social butterfly and he didn't let anything hold him back because he had a thirst for knowledge. Once Charles started in school we would start to see some indicators that perhaps there was more to the delays but again we were not as concerned because Charles adjusted well in new experiences and he didn't express any issues he was having.
After Charles started elementary school we started to see some more indicators of autism develop though. Charles suffers from anxiety issues and they started to present in 1st grade. When the anxiety set in he would start fidgeting with his fingers. We had seen forms of this behavior in Johnathan also. As time went on more of the stimming began - pacing the floor, flapping his arms, and humming/talking continuously. Meanwhile we were in for a shock when one day we received an email asking why we didn't have Charles' autism listed in his IEP. I tried to explain that Charles did not have an autism diagnosis. Imagine my surprise to find out that our previous doctor had put in his personal file that he had autism. I was in shock that she had done this without talking to us about it and stating it only because Johnathan had autism.
It might surprise you to know that it's difficult to have a diagnosis like that removed. One of the main reasons we had stopped seeing that doctor was because her refusal to listen to our concerns. To find out she had entered information like that into his permeant file was so frustrating. This diagnosis changed his access to his therapies and we had to scramble to ensure nothing was altered because of it. Simple things like who could service his speech issues was even put in to question. Thankfully we were able to get things adjusted but still was another unexpected roadblock in helping our boys learning journey.
I'll admit that in the end having the medical diagnosis placed on Charles has not been a bad thing. It allowed his IEP continue after the Developmental Delayed classification stopped in 3rd grade (a child's eligibility for the "developmental delay" disability category on their IEP ends at age nine, or by the end of the school year of their ninth birthday) Since Charles had the autism medical diagnosis, getting the educational diagnosis of autism was easier. I'm thankful that we didn't have to fight to ensure the continuation of his IEP and that the focus could be kept on helping him develop as a student.
One of the things people often ask is if the boys understand what autism means. Truthfully I believe they don't. I have read many books by parents of autistic children and some from children we understand they have autism. The things they discuss has included many that understand what being autistic means and many that don't. A recent experience with Charles brought this question to light. I was talking to Charles and mentioned something about his autism. He said 'I don't have autism mommy, Johnny does.' I explained that well both Johnathan and him are autistic and that's why I want to always learn about it because it is so different for each person.
Having both our boys on the autism spectrum was not an expected journey for us. Having our first son be diagnosed and starting on our journey with him was a learning experience. When Charles got his diagnosis was a totally different journey and led to a whole new experience. We love both of our boys and the unique personalities they each have.
Jim:
With Charlie I had a hard time bonding with him. During his delivery, there was a medical issue that kept me outside of the delivery room until he was already out. I often felt this delayed our bonding connection.
When I first saw him, I was instantly in love. I was excited to have another child.
Our bonding was delayed, but it did come around. Charlie was different than Johnny, like Michelle said, he didn't like to cuddle, napping or being swaddled. Once he moved out of the crib and into a bed, he required one of us to laydown with him in order to fall asleep every night. He also loved to have us read to him at night too. The best part is that this still continues to this day, even thought he is 14. Michelle reads the story to him and I get the pleasure of laying down with him at night.
I look forward to this every night. It is mine and his special time together to talk and tease each other. Mostly teasing. Then we will lay quietly as I watch Facebook reels and he drifts off.
As Michelle stated, we noticed some delays with Charlie, but for the most part they were not as pronounced as Johnathan's. From my perspective, his main issue was his speech. Which Michelle and I both had issues with grown up and also needed assistance to overcome. At that time, I thought that was his issue. The therapy was helping, well mostly. He still gets to points where he is so excited that he speaks where you can't always understand him. The great thing is that if you say you can't understand him. He will slow down and try to say the word(s) more clearly. If we still can't understand him, he will find a replacement word or will act it out to get it so we understand. This has led to us all laughing quite hard at times. I am always amazed at how he adapts and continues to try and figure out how to get his points across.
I still remember one of the first times that I learned that Charlie probably had autism. My father-in-law had made a comment that both boys had autism. I was confused at that time as I didn't realize that Charlie had autism. I knew he had some issues, but didn't think it had amounted to autism. It was that night, that Michelle and I talked about it. That is when I learned that Charlie had received his medical diagnosis.
After that conversation, I was so confused. At that point, there was still some science that was showing having multiple children with autism was rare. Here we were with both of our boys having autism. I also now know that that science was incorrect.
Everyday I am so proud of Charlie. Every time when there is a limitation or a perceived limitation placed in front of him. He always jumps over the limitation and succeeds. With him, I am so excited for his future to see what all he can accomplish.
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