It has been roughly 46 hours since I heard that word, the one that made my ears ring and my breath catch in my throat: Autism.
You'd have to be living under a rock these days to avoid that word. After all, it is the buzz word when it comes to developmental delays, but there is A LOT of confusion and misinformation floating around concerning it. For you, hearing that word probably doesn't change your life, but when you are sitting in a doctor's office after HOURS of testing and evaluation, and the doctor says things like, "...results which are atypical for a child her age," and "...significantly delayed," and "...needs substantial support," hearing that word is devastating. My child, my angel, my Love, has been diagnosed with Autism Spectrum Disorder (ASD).
Thursday was the longest day of my life. We woke up early and dropped Payton Joy off at daycare like we do everyday, but instead of heading to school, we were heading to the UT Boling Center for Developmental Disabilities where Rylee Love had an appointment to undergo a full psychological evaluation. If you have followed my blog, you know she has had difficulties with anxiety and panic attacks since she was very young. She also had some other concerning symptoms, that led me to ask her pediatrician for a referral for further testing this summer. In September, The Boling Center called me in for a 2 hour parent interview where we discussed Rylee and her development and what I had observed, and they decided there was enough red flags to go ahead and give her an evaluation. So now the time for answers had finally come, and I thought I was ready... But then they said that word.
They started with the good news. Her IQ and Cognitive function test scores were very high, They gave her a reading level test and her reading level was at 8 years, 8 months (She is currently only 6 years, 6 months old.), the doctor said with her scores, he would consider her intellectually gifted. Her adaptive skills test scores were in the lower end of the average range meaning that she does have the adaptive skills of a neuro-typical child. But then came the bad news, even though she has good language skills, her social communication skills are not where they need to be. Her inattention and hyperactivity levels are highly elevated. Her emotional regulation skills are lacking. She has high levels of anxiety (we knew that already). But most concerning to the doctors (and what made me ask for the referral in the first place) were her restrictive, repetitive behaviors. She has several, and they usually show up most when she is anxious. She licks her fingers over and over again. She chews on and eats her hair and fingernails. She constantly fidgets. She moves her fingers in an atypical, repetitive way when she is stressed. There are others, too, but what they are doesn't really matter. The fact that she needs these motions to process her environment is the issue. She has Autism.
As hard as the truth is to accept, I know that knowing what the problem is is the best way for us to support her and get her the services she needs to help improve her deficits and continue to build upon her strengths. I wrote a poem Thursday night about how I felt about her diagnosis. Writing is my coping mechanism, and it helped me process my emotions. I started out writing feeling devastated and ended feeling hopeful and filled with faith. In my daily Bible studies, a verse has stood out to me for her and for me. Deuteronomy 31:8 "Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; He will neither fail you nor abandon you." God created this child in His own image. He did not make a mistake. I have no doubts that she is going to do great things in life. I am also glad to know that there is a reason for her struggles and that we now know what that reason is. I hope with this knowledge will come understanding and compassion from those around her.
Because Autism is a Spectrum Disorder, it looks completely different in every child. It all depends on where that child falls on the spectrum. Rylee Love happens to have High Functioning Autism. This means she doesn't have the intellectual impairments or language impairments that often go along with the disorder. The difficult thing about this disorder is that it is invisible in many ways. Because she can walk and talk and does well in school, there are some who don't understand that she has a disability. She is a child with special needs, and just because her needs don't require her to be in a wheelchair or have academic interventions, does not mean that her needs don't matter. She NEEDS sensory breaks when she is feeling overwhelmed. She NEEDS compassion and understanding that a meltdown is not the same as a tantrum and is completely out of her control. She NEEDS empathy when she is feeling anxious-no matter how irrational her fears may seem, to her they are very real, and the panic she feels won't go away just because you think she shouldn't be afraid. She NEEDS structures in place to help her tune out all her surrounding stimulation and focus. She NEEDS to be allowed to fidget and move around. She NEEDS assistance with executive function (self-control) and organizational skills. But most of all, she NEEDS love. When I told her about her diagnosis and explained as much as I could to her, she seemed so relieved. "People call me weird sometimes," she said. As my heart shattered, I replied, "You are NOT weird. Your brain just works differently than theirs does and because they are not smart enough to understand that they think it is weird. Maybe if someone calls you weird in the future, you can tell them about your Autism, so they will know better." After lots of questions and tons of snuggles and hugs, her final observation was, "I like my different brain." Lord, please let her always feel that way!
