Dee-Dee Kanhai, “The Spice of Suburbia” is honoring Autism Awareness Month by handing over her blog this month to her sister-in-law Tricia Kanhai, Autism Warrior Mom.
Intro By: Dee-Dee Kanhai aka The Spice of Suburbia
Today I am going to introduce you to my sister-in-law, Tricia Kanhai. Almost 20 years have gone by since we first met and we have grown closer with each passing year.
I have watched Tricia evolve so much as a person, specifically these last four years (becoming a mother can do that to you). Seeing her navigate her way through this phase of her life so smoothly, is truly remarkable. Today, I decided she deserved more than a “dedicated blog”, so she is here today to tell her story, in her own voice! Everyone meet Tricia, my sister…
I hate to brag, but I’m that “perfect” mom. You know … the mom who is super organized, filled with an abundance of energy, has their baby following the perfect schedule, and whose child is well set out on a trajectory that will see said child gracing the halls of an Ivy League school (that of course will be financed by both academic and athletic scholarships). Yes, I’m that mom!!! Well, at least I thought I was…
When I had my daughter Mila, I was excited for her to enter the world and immediately start adhering to the routine I had worked hard to formulate. When she arrived she was beautiful (biased mom comment)!
As soon as Mila was born, she was taken to the Neonatal Intensive Care Unit (NICU) because her blood sugar was low. I wouldn’t see Mila until seven long hours had passed. I had delivered Mila via C-section and I couldn’t get up to visit her. When Mila and I were finally reunited I was elated; but, I was also confused. My look of confusion was quite evident. When the nurse handed me Mila I saw that they had given her a huge orange pacifier. I was like “What is this”? The nurse said that they had given it to her because she was being fussy. Fussy? My baby? Couldn’t be.
After the pacifier fiasco, I was determined to get the show on the road. For some reason, Mila did not want to get rid of her pacifier. She also did not want to be placed in the bassinet. But the greatest atrocity was that Mila had apparently become addicted to formula. So, at the tender age of 12 hours old Mila had not relinquished her pacifier, she was addicted to formula, and she must have missed me so much when we were separated, she did not want me to put her down! Needless to say, my plan was failing.
I was confident that being at home would help Mila settle into her routine. I was wrong. Mila let me know that she was the boss. Queue the mommy tears now. I decided to go with the flow and work out a new plan. Within a week, I discovered that instead of holding Mila all day long, I could get some respite by placing her in her bouncer. Mila would be extremely content in her bouncer. The only thing that would disturb her would be loud noises. If someone sneezed, coughed, or laughed too hard Mila would scream at the top of her lungs. She had really sensitive ears. I pretended to not be worried about her ears, but I was.
While her sensitivity to loud noises worried me, her doctor said she was still a newborn and would be sensitive to loud sounds. I made sure to start keeping track of Mila’s development. I felt at ease when she started achieving her milestones. When she started to smile, laugh, and make eye contact, those traits provided me with a sense of relief. I enjoyed smiling, laughing, and having fun with my baby.
Mila was three months old when we started going out to different places and attending church. By the time she was six months old, I knew that the church environment was too loud for her. She would scream as soon as the congregation started singing. As Mila grew older and approached her first birthday, she would cover her ears as she cried while we were at church. She was letting me know that it was too much for her. One day I left church early and cried as I drove home. I knew that Mila’s reaction and sensitivity to noises and crowds was a sign of autism.
Autism Spectrum Disorder (ASD) was something I didn’t know too much about. I did, however, know what the signs of autism were. The reason for this is because my favorite radio station 93.7 WBLK, located in Buffalo, New York, frequently plays a public service announcement that tells the listener what the various signs of autism are. That same PSA also makes it clear that early diagnosis is KEY to treating this disorder.
When Mila turned fifteen months and began to spin in circles, I knew that she had autism. I took Mila to our family doctor and told him that these are some of the signs of autism she is displaying:
- Sensitive to loud sounds and noisy crowds.
- Likes to hold hair brush with a rubber handle (all day)
- Makes a humming sound and says “Eeeeeee” all the time
- Speech regression of early words
- Walks on tippy toes
- Collects sticks instead of playing (when we go to the park)
- Holds a string in her hand
- Has absolutely no fear of danger
- Spins in circles
Our family doctor seemed concerned and made a referral to a pediatrician. When we finally saw the pediatrician (after waiting six months), he recommended that we put Mila in daycare, and enroll her in speech therapy. He also told me that although Mila was exhibiting the signs of autism, he did not want to diagnose her at the time. He wanted to see how she would develop while interacting with other kids her age.
That decision to not diagnose Mila made me hold out a little hope that maybe she didn’t have autism and maybe it could be something else. At this point in time, I immediately enrolled Mila in full-time daycare, and I started to work on my PhD at the online medical school of “Google”. My sister-in-law, Dee-Dee, also started obtaining her PhD from Google Medical School as well. We were trying to see if there was something else we could diagnose her with. I have to admit that I was scared for Mila to be diagnosed with autism. I attribute my fear of that diagnosis to my lack of awareness about what autism was.
Mila was officially diagnosed by a developmental pediatrician when she was two and a half years old. That was May 2017. No parent wants to hear that their child was been diagnosed with anything. I was devastated. In that moment I tried to hold it together. When the doctor handed me a stack of paperwork to complete and a page of phone numbers to call that same day to get added to the waitlist for therapy, I was finally defeated. When I realized that the waitlist for Intensive Behavioral Intervention (IBI) therapy in Ontario (Canada) was two years, I broke down.
Today, we are still on the waitlist for IBI therapy. That hasn’t stopped me from persistently seeking ways in which I can help my child. She is in speech therapy, occupational therapy, swimming lessons, and ballet. I even had Mila participate in a research study at the University of Ontario Institute of Technology where the study investigates the impact of a fundamental movement skill intervention (throwing, kicking, catching, jumping, etc.) for 3 to 5 year old children with ASD. That “Active Start” study has helped Mila tremendously with her motor, social, and behavioral skills. You should see Mila bounce pass a full-sized basketball and catch a pass back!
After taking a hiatus from church, we returned last April on Autism Awareness Day. A special full-day program was organized in honor of Mila and other children who are on the spectrum. One of my proudest moments was when Mila performed a solo that night. Although this solo was unplanned, it was perfect. Mila loves to sing and can actually sing more words than she can speak. During the concert that evening, Mila was having a meltdown because she wanted to go up on the stage to sing. Mila was given her moment to shine by the event organizers. Assisted by a pianist, Mila performed “This Little Light of Mine”. It was amazing, and she was so happy.
Mila is four years old now, and she’s thriving. Mila is non-verbal but is beginning to say more words and formulate sentences as each day passes. She makes me beam with pride. She is filled with so much light and tons of energy. She is loved unconditionally, she is happy, she is social, she has an amazing village helping to raise her, and she is loved and protected by her school community. I think the school community fell in love with Mila when she tried to join the cross-country running team last September. She was sadly disappointed to learn she has to be in the third grade to join the team. That didn’t stop her from running laps with the kids as they practiced (and I almost passed out from trying to catch her… trust me she’s fast).
This journey as an autism mom is by far not an easy one. Like many autism parents, we draw upon a strength inside us and a community that we had no idea existed. I will fight for my daughter, I will advocate for her, and I will do everything I can to make sure her little light continues to shine. As I vow to use my voice to bring more autism awareness to our world, I believe that “this little light of mine” will use her voice her as well, to bring much-needed awareness to this cause!
I never knew how much I could love someone until I had Mila. As for me, it turns out that I might be that “perfect mom” after all! I just didn’t know what she looked like!!
Dee-Dee Kanhai, aka “The Spice of Suburbia”, was a big city girl for 25 years who was transplanted to the Suburbs of Northern New Jersey. This relocation led to her “undoing” and with that, the discovery of her true self. Besides being a wife and mother to a teenage daughter and toy Chihuahua, Dee-Dee works in finance and owns a small Etsy Shop @LoveTheUndoing, where she sells heart-made jewelry, crystals, and other whimsical crafts. Dee-Dee is a student of life, teacher of meditation, practicing yogi and a mystical moon child.