Autism Diagnosis - Third Times the Charm
I gripped my 2 year olds hand while balancing the diaper bag on the other shoulder and walked across the half filled parking lot to our minivan. Leo was pulling and fighting to get free. He was eager to run, and why shouldn’t he after a long hour and a half appointment with the paediatrician? But running would have to wait; there wasn’t time and even if there were, I certainly wasn’t in the right headspace. Bella (my 10 yr old) kept questioning me about where we were getting lunch, what we were eating and how long we have before returning to the same building for her paediatrician appointment. I snapped at her to give me a minute to think. Actually, I needed much more than a minute. I apologized and told her that Leo’s appointment was very stressful and I needed some quiet.
Knowing the outcome and experiencing it are two very different things. My reaction never fails to surprise me. See, I had been here before; not once but twice. Now it’s three times I’ve sat with my little two year as the specialist said the word that continually changes my family, Autism.
When Bella was diagnosed with autism a few days after her 3rd birthday. I knew it was coming and I was pretty optimistic. She would be fine, I was 90% certain.
When Jude was diagnosed with autism at 2.5 yrs old I was pretty much devastated. He had already been through so much with his bilateral cleft lip and palate (bclp). Heck, I had been through so much! I was so ready for a break. On top of that, Jude’s autism felt different from Bella’s - not in a good way.
Now Leo’s getting diagnosed with autism and I’m....... well, there aren’t really words. It’s a strange feeling to have your 3rd child be diagnosed autistic. I was hoping that “3rd times the charm” would apply in this situation and the diagnosis would be easy to handle. I was sort of right.
I had been ultra diligent in monitoring Leo’s development since 2 of my other children are also autistic. I had seen the signs and grew increasingly concerned as he didn’t develop like his peers. He was most likely autistic and I knew it wasn’t the end of the world. Even though I had gone into the appointment with this realization hearing a specialized confirm my suspicion was still difficult.
During the appointment our wonderful paediatrician had little doubt that our beautiful, happy Leo is also autistic. She went through the required steps of referral to the Child Developmental Center and a speech therapist (SLP). The dr. also warned me that the SLP will most likely bring up autism and to tell her that he’s already being diagnosed. She put in a referral for a hearing test and handed me half a dozen blood test forms looking for things I cant even pronounce.
She gave me our disability tax forms to fill out and paperwork to get his funding (FSCD) account set up with our appointed government special needs worker. Luckily, I’m in constant contact with our worker so I’d just shoot her an email to add Leo onto our contract.
This all felt strangely routine.
Genetics was a topic we discussed for a while since 3 children with autism is hardly the norm. We also have many autistic individuals on both sides of our family. She referred Leo and Jude to genetics at Alberta Children’s Hospital for in-depth genetic screening. Since Leo has Macrocephaly (a fancy word for an unusually big head), the doctor is concerned there may be something else going on. My older 3 kids have all seen genetics at the hospital, so this is hardly new.
Yep, strangely routine. How did this become my norm?
As I strapped Leo in his car seat I felt empty and discouraged. I felt defeated. Like a wounded soldier being sent back into an excruciating battle, I questioned if I had enough fight left in me, enough determination. Would this be my breaking point? I knew all too well what having an autistic child entails and I didn’t feel ready.
I still don’t feel ready. Yes, I know the logistics of it: the paperwork, the funding, the special programs, the strategies, etc. Knowing what to do gives me some peace. Knowing that I have to do it all makes me mentally and physically exhausted. Like really exhausted. Like stay in my semi clean pjs with a 3rd day messy bun, while watching my 2 year old line up his cars as he watches an episode of Paw Patrol that I can recite in my sleep kind of exhausted. This day will most likely include junk food, Netflix, Disney Emoji Blitz, the couch and a ridiculous amount of Diet Pepsi. It’s not a pretty sight but its reality.
Coming to terms with a diagnosis takes time. There’s grief and tears, denial and frustration. There’s heartache. I know this for a fact. Im trying to give myself permission to relax and get use to the new path my family is on. I’m writing this in my pjs while laying in bed, eating pretzel sticks, drinking diet Pepsi and watching Stranger Things. That’s my relaxing and some days thats exactly what I need.
As of right now Im coping. Im playing with my kids, taking them to appointments and lessons, making school lunches, keeping my house clean(ish) and following through on life’s obligations. Im a mom, so I carry on.
It’s been a month since I walked from that paediatricians office in a daze. A month since my life path curved in an unexpected way yet again. A month of contemplation and avoidance. I know the following months will be challenging but I’m so grateful for my adorable and joyful Leo. He makes all this worth it.
Leo stayed happy while we shopped by sucking all the chocolate off a Kit Kat Bar. #chocolatenotpoop
If you’ve experienced a life changing diagnosis how did you handle it? What helped you cope and move forward? Leave a comment to share your experiences.
Hello!
I’m Kate and I’m a mom of four. Since 2010 we’ve had one baby born with a bilateral cleft lip and palate and three children diagnosed with autism. Parenting certainly hasn’t been what I was expecting - it’s been harder (like A LOT harder) and much more wonderful. My world has expanded and knowledge deepened as I’ve spent the last decade raising these four special kids. Supporting other moms of autistic and cleft children is my passion. Here you’ll find information, strategies and first hand experiences to help you navigate these special challenges on-the-go and in your own home.
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