I Am Not Ready To See Autism As A Super Power. Please Let Me Grieve.
Photo Credit: Emily Morse
April is National Autism Month: Here is our story: I reflect back on the time my husband and I decided to have a baby. I was quickly approaching the age of 40 when we got pregnant. I know I had the thought “What if the baby has Autism?” We had minimal testing done early on, but it all came back fine and we felt we had won the lottery. I got lost in the day dreaming you do when you are pregnant. What will he look like? What will he want to be when he grows up? Will he sing like me or play an instrument like his dad? We started discussing how we would raise him… we really wanted him to be involved in playing a musical instrument, but would we allow him to play football if he wanted? The dreams of parents.
I wouldn’t say Parker was an easy baby and I wouldn’t say Parker was a difficult baby. I do remember how easily he smiled. I can even hear the photographer saying at his 6-month pictures how easily he smiled. I had this fleeting thought when she said that “See he doesn’t have autism.” I looked for those early signs because of my age. I was scared. However, he made eye contact with me and my husband, and was hitting developmental milestones. As I look back at those early pictures of Parker and I have such sadness. I look at them differently now… I see them as the pictures before I knew. We measure time like before we knew and after.
When Parker turned one we moved to a new state and shortly after that I was pregnant again. My husband was traveling a lot back then and I was lonely and tired. I started to notice that Parker’s behaviors were difficult. He would easily melt down over simple things. When we went to the park he would scream and hit and kick when we left. As I looked around I didn’t see other kids behaving with such angry emotions. I noticed that when I took Parker places I had a knot in my stomach that I couldn’t quite put my finger on – a lot of fear around “Would he melt down?” I would be standing by the stove and he would push me as if to tell me something, but he couldn’t quite get the message across. One time we went to an early childhood program and he was running from activity to activity not really playing with anything and he melted down several times.
I left that class with tears in my eyes as I wondered what I was doing wrong? I had been a pre-school teacher in the past and trained in Conscious Discipline and I began using the strategies I knew so well. I taught Parker to be a STAR = Stop, Take a deep breathe And Relax. I created a safe place with pictures of him showing different emotions. I read him books on emotions. One day my daughter who was 15 at the time said to me,as she was trying to help Parker through a melt down using the STAR technique, Mom this isn’t working” I remember snapping back, “You have to give it time and he is a boy.” It is funny when I look back on this time I never once really thought something was wrong with Parker, I thought it was me. I was 41 in a state with no friends, lonely, and with a 2-year-old and a new born. Maybe I just didn’t have it in me, and was I really doing the best I could? I stopped taking Parker places… we didn’t go to the store with him anymore as it always resulted in a meltdown. The zoo was a nightmare. Any place that had a lot of people was just too hard. The park was the most we could do and even that was a guaranteed shit show.
During this time, we hired a new nanny, she had been with us about two weeks when she brought to us concerns about Parker. She stated, he doesn’t make eye contact with me, he isn’t “playing with toys” he is just holding them and walking around, he is easily upset, and it turns into a meltdown. I immediately thought, “You don’t know my son, you have only known him for two weeks.” And I was off, I was off to prove her wrong. That night I got online and started Googling “Possible signs of autism in babies and toddlers.”
By 6 months, no social smiles or other warm, joyful expressions directed at people
By 6 months, limited or no eye contact
By 9 months, no sharing of vocal sounds, smiles or other nonverbal communication
By 12 months, no babbling
By 12 months, no use of gestures to communicate (e.g. pointing, reaching, waving etc.)
By 12 months, no response to name when called
By 16 months, no words
By 24 months, no meaningful, two-word phrases
Any loss of any previously acquired speech, babbling or social skills
Possible signs of autism at any age:
Avoids eye contact and prefers to be alone
Struggles with understanding other people’s feelings
Remains nonverbal or has delayed language development
Repeats words or phrases over and over (echolalia)
Gets upset by minor changes in routine or surroundings
Has highly restricted interests
Performs repetitive behaviors such as flapping, rocking or spinning
Has unusual and often intense reactions to sounds, smells, tastes, textures, lights and/or colors
Source: https://www.autismspeaks.org/what-autism/from-first-concern-to-action/learn-signs
I just couldn’t see it. And then I took a quiz. The Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R™) is a scientifically validated tool for screening children between 16 and 30 months of age that assesses risk for autism spectrum disorder (ASD). https://www.autismspeaks.org/what-autism/diagnosis/screen-your-child.
I CAME UP WITH A BIG FAT ZERO. HA! I KNEW HE DIDN’T HAVE AUTISM. SUCK IT!
Next, we went to our family Dr. Keep in mind at this point Parker was talking, however as I listened closer he was repeating what we said but he really wasn’t comprehending what we were saying. We now know this is echolalia which is a “Meaningless repetition of another person’s spoken words.” And he did make eye contact but when I began watching him closer with others he did turn away quickly, and the nanny was right he wasn’t using his imagination to play with toys he would carry them around as objects. Our family Dr was so kind and yet as I look back on that day, maybe too kind. I sat on the floor with Parker in the Dr’s office with my husband next to me and I cried and cried saying, “I think he is fine.” The Dr said, “I don’t think he has Autism but let’s treat some of his symptoms. She made a referral for speech and occupational therapy to help with emotion regulation.
My next stop was to call the school district. I knew they would provide a screening for him and if he was behind in speech and emotional regulation they would need to
provide services and I wanted them started NOW. I called the school and because Parker was 33- months- old at this point they tried to put off the screening until he turned 3 in June.
I was like HELL NO, you come now. I knew enough about how the school district works that they would have 45 calendars to even offer services and Parker would slip even further behind (if he was behind that is). So they agreed to come screen him, I told them that our nanny suspected Autism, and they shared they would send out the Autism specialist in addition to the early childhood team.
I started struggling to sleep as I laid in bed staring at the ceiling with the “WHAT IF” fear monster. What if he does have Autism? What if he never learns to drive? What if he never gets married? What if he never leaves the home? I couldn’t stop the wheels turning. I cried and cried until I thought I couldn’t and then I would cry some more. I didn’t even know where to turn. My husband kept saying I don’t think he has Autism and tried to soothe me, but the fear and the unknown sent me spiraling.
Finally, the day came when the school would come to screen him. I had filled out a billion questionnaires and knew by this point that Parker was behind. This hit me like a ton of bricks as I had been in the Early Childhood Field for over 20 years, how could I miss this? The shame was so high at this point I could hardly breathe. As I sat there on the floor with Parker and holding a 9-month-old I started to see just how hard it was for Parker to interact with others. My heart was shattering into a million pieces. The Autism specialist looked at me and said, “Jamie, I can usually tell right away if a child has Autism but honestly I just can’t tell, but he does have a lot of the signs.” I remember heading into work and calling my husband and crying so hard. We weren’t getting out of this -there was something wrong with Parker.
The road was long for a final Autism diagnosis it took almost a year to get a formal Autism diagnose and that was a year of hell. I am an information junkie, so I began reading whatever I could get my hands on. I joined Facebook groups and that seemed to make my fear grow as parents spoke of their painful tales and just how extreme Autism behaviors can be. I read Parents blogs and Facebook posts who shared how Autism was a super power. I turned to my husband one day and said, “I am just not ready to believe that Autism is a super power I need to grieve the losses.”
You see, a lot of things had died right before our very eyes, and I am not sure people can really understand that because Parker is healthy, and is happy. But I was grieving the loss of those dreams we had before he was born. I was running Parker to OT and Speech and special education classes while other moms were heading off to T-ball and dance. We couldn’t go to the zoo without thinking about how many people would be there, where would we take breaks at and how would this be fair to his younger brother? While other parents were tucking their little ones in at night I needed a picture schedule to help Parker understand. We had cards all over the house that said things like FIRST THIS and THEN THAT. Before Parker got out of bed we provided OT by stretching his body to provide regulation. We would head to the basement to help him spin and bounce providing stimulation to help him regulate.
More losses- We knew if we went to the park we would need to be prepared to carry a screaming three-year- old home kicking and hitting as we watched other parents look at us and at times judge. I remember taking Parker once to a bouncy house where he pushed a child out of the way. He wasn’t being mean he just couldn’t communicate to move, and this parent lit in to him and me. I was so hurt and full of shame. It was hard to keep providing those experiences as they left scars on my heart and often with me crying in the car on the way home. Would we ever have a “normal” life with “normal” experiences?
And ya know what? It is perfectly okay for me to feel that Autism isn’t a super power just yet. It is okay to name those losses and grieve. I know that once I grieved those ambiguous losses that new dreams could be born.
We have good days and bad weeks, sometimes Autism is just too big and I can’t see my little guy who is so sweet and loving. And in those moments I don’t see the superpower I see the loss.
I am sure you are wondering, “What do you say to a friend who has just found out their child has special needs?” And guess what, you are off the hook, because you don’t have to make me feel better by saying things like “He will be fine,” and “He has you.” Those things just invalidate my pain. I ultimately know all those things, but I am still hurting. In fact, just a simple, “Jamie this is so hard, tell me about it” means so much. There isn’t any fixing what we have lost, we just need your support in grieving it. It is okay to ask us about Parker too we sometimes just need a safe place to vent all the struggle.
We are grateful that Parker is healthy, and two-years into this journey Parker has rocked it. I can’t say enough about early intervention. If you suspect something just isn’t right with your little one– Act Now. If the Dr says “He is fine” but you have that pit in your stomach call your local school district they can begin the screening process for you and detect many things that would prevent your child from entering Kindergarten ready to roll. For more information on Autism visit the Autism Speaks website. It has been a great resource for us.
It is funny, as I wrote this post Parker was running around the house with a Batman cape on. MMMMMmmmm, my grief is shifting and I am beginning to see his super powers and new dreams are forming.
Photo Credit: Lauren Riley
Here at Conscious Healing Counseling, we provide mental health support for individuals, families, children, teens, & couples.
Our wholehearted, individualized approach facilitates conscious change so you can live an authentic life filled with love and belonging.
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Author: Jamie Mosley
Jamie is board certified Licensed Professional Clinical Counselor and Certified Daring Way™ Facilitaor in Minnesota. She is passionate about living a wholehearted life. Dr. Brené Brown defines wholehearted living as “engaging in our lives from a place of worthiness.” She trusts that the wisdom to lead a healthy, joyful life is within each and every one of us and her role is to facilitate you in unlocking your own true wisdom.