08 Jan CAPTURING JOY THROUGH THE EYES OF AUTISM
Let me start off first by introducing myself. My name is Megan. I have been married to a wonderful man, Aaron, for 11 years now and we have two beautiful boys, Parker and Fisher. The story you are about to read starts about two years ago.
My husband and I knew very early on that Fisher was different. You see, our first son, Parker, had a speech delay and went to the Early Childhood School full-time prior to kindergarten to help assist him with his delay. Fisher was not Parker, though, and while he wasn’t speaking as he should, there were also other behaviors he exhibited that made us think it could be something else. I called the Early Childhood School to have him evaluated and when we did, they told us he qualified for speech and admitted him on a full-time basis. Through this time, I still felt it was more than speech, but left it in the hands of the experts. At this same time, I was going through grad school to get certified as a family nurse practitioner. When we studied pediatrics, I would think of Fisher and draw my own possible diagnoses. I had his hearing evaluated specifically to determine if there was some sort of neurological problem to see if he was not able to hear words accurately. As hard as it was to evaluate a child who doesn’t speak, according to the experts, he passed with flying colors.
When I was studying mental health in grad school, I again kept Fisher in my mind, but I canceled it out in my own head because I didn’t see the behaviors that children with mental health disorders exhibited. Fisher’s teacher then contacted me and asked my husband and I to come in and speak with her and some of the other faculty working with Fisher. They had noticed some behaviors from Fisher that warranted an evaluation of autism. They asked if we would be willing to do the evaluation and I think I shocked them when I jumped at the chance. You see, for the past couple of years, I just wanted an answer. I didn’t care what the answer was, if I could just HAVE the answer.
After loads of paperwork and play evaluations, the psychologist met with us to tell us that he was indeed on the autism spectrum. The behaviors I thought he didn’t exhibit were things that I casually brushed off as just being a quirk of my child. The diagnosis didn’t really change things. I did a lot of research online to see if there were any resources I could provide Fisher to help him. We went through the stage where I would have to hug him 50 times a day. We couldn’t even read a bedtime book without a hug at the turn of every page. I talked with those working with him and got conflicting methods to deal with this. I bought him a weighted blanket to help him feel comfort from the pressure. We got a dog to give him a companion that would be his own. But with every attempt to help him, we took seemed to take two steps back. He didn’t want any of those things.
We told our friends and family about his diagnosis and many took it as fact. We did get comments like, “Maybe they are wrong. I have seen him play with my kids,” or “Are you sure? He’s just so cute.” I never really understood some of the comments we got, but I chalk it up to them not really knowing what to say. It was hard talking to others because they didn’t see Fisher like I did. They would see him for little parts of random days, but were not fully immersed in his day to day life. What those I told didn’t understand is the feeling of not hearing your child tell you “I love you.” I cried many nights because I just wanted to hear this from him. Others would try and reassure me by saying “Well, at least he doesn’t say he hates you and you’re not his friend anymore for not buying him a toy at the store.” Sure, the negatives weren’t there. but neither were the positives. I had to reassure myself by his hugs and other forms of affection that he indeed loved me even though he couldn’t verbalize it.
I tried to include him in activities such as swim practice. I told the swim teacher about his diagnosis after I could see the very apparent frustration on her face when he screamed hysterically about being in the water. They even moved him down to a level with babies so he was able to succeed and move back up. At this point, they gave him a new instructor and after 6 months of what I felt was torture for my son, I took him out of swim. You see, Fisher hates certain aspects of water. When I’m running the water for a bath, he screams hysterically until it’s done and I turn it off. He hates the rain and he hates being sprayed with a water bottle at the hair salon. He hates showers. Anything where water is running or spraying is a challenge for the sensory part of his diagnosis.
The hair salon was the second place where I told a stranger about his diagnosis. His hair stylist was asking him questions and after a few moments of no answers, I would respond for him. I recognized the look of confusion on her face when a 5 year old wouldn’t speak, and I never wanted anyone to think of him as rude, but he either didn’t understand what was being said and/or he could not verbally respond with an answer that made sense. The hair stylist was so great with him and we still to this day go to her for his haircuts.
Beyond this, I never publicly announced my son’s diagnosis. What was the point? It was nobody’s business. That is, until recently. I felt like I was not telling anyone to be retaliatory in a way. If you don’t know my son, you don’t have a right to know about him. The thing of it is, the Lord was telling me something different. The Lord was pulling at my heart to share Fisher’s story. When I was doing research after his diagnosis, it was hard to find people like me. I felt like his autism was not “bad enough” to warrant any attention. He was healthy. I didn’t want people to think I was seeking attention because that is not me. But his joy – oh, the joy – THAT warrants attention and that is why I am writing this post. The Lord has blessed me and my husband tremendously through this little boy. He finds joy in life that I would not otherwise notice.
About one year before Fisher’s diagnosis, my mother passed away from her battle with breast cancer. At the funeral, my brother spoke and read Psalm 127:3-5, “Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them!” He brought up this verse because we were my mother’s arrows that she sent out into the world. I always felt close to this verse throughout our testing with Fisher because his diagnosis doesn’t change the meaning of the verse. Fisher is my arrow. I will trust the Lord as I send him out into the world and more importantly, I am blessed because of him!
Fisher may not have ‘friends’ as most other children his age do, and while this bothers me and breaks my heart, he has joy! While other kids are playing together at the park and he is by himself, acting out his most recent favorite cartoon character, I get sad, but he has joy! While other kids are playing sports and involved in other “normal kid activities,” I break down, but he shows me his joy! He may not be “normal,” but if not being normal means he gets to live a joyful life, who wants to be normal? The struggles he has are more struggles for me because, while I realize his “autism,” he doesn’t realize this about himself.
I recently started the show, Parenthood, and I have to say, I stopped watching. It hits home for many reasons, but one of the first episodes I saw was the autism storyline. My husband and I talk about it freely in front of Fisher now because he doesn’t understand, but when will the point come when he does understand his differences? Will he ever notice? Will he go to college? Will he be able to support himself one day? I don’t know these answers and, while it kills me, I will trust the Lord. I will trust Him for what He is teaching me now, and that’s to see the beauty and joy that’s very evident in my life. The beauty and joy that this little six year old has taught me. A verse that continues to bring me comfort as we walk this path with our son is 2 Corinthians 1:3-4, “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”