-Jacqueline Lisseth Grantham
Real Mom of twin boys Leo and Luca
I loved being pregnant! I loved that my body was doing something amazing. I loved feeling the waves and kicks, the "Can I rub your belly?" requests, and also the look of shock and excitement when I told people I was having twin boys.
My pregnancy was, however, deceiving and confusing.
A "Normal Pregnancy"
I felt great and looked like a "normal" pregnant lady on the outside, but on the inside the babies struggled with development and scares of TTTS (twin to twin transfusion syndrome). I was monitored weekly and prepared for the worst-case scenario: losing one or both of the babies I had already fallen so deeply in love with. I still remember the sound of their heartbeats at the doctor's office when the tech would turn the volume up; beating fast like a college drum line.
At 32 weeks +1 day, Baby A (Leo) had had enough. He was starving and squished, and was coming whether we were ready or not...we were not ready! Baby B (Luca) was not as easy to convince that it was time for his born-day. But the doctors won that battle, and on July 30, 2015 at 3:12 and 3:15 pm Leo and Luca (A.K.A. LLCoolboyz) were born. Leo weighed 2 lbs 1 oz, and Luca was a chunk compared to his older brother at a whopping 3 lbs 13 oz. They hung out in the NICU bulking up for the next 7 and 5 weeks respectively.
We always expected that they would experience delays. "They're preemies, and they're boys!" we were told. "Be patient, they'll hit their milestones when they hit them, and they'll catch up eventually." So, we went along and embarked on our exhausted, new-parent, "We have no idea what we are doing" journey...literally juggling two newborns.
They were pretty on track with what they "should" be doing, just 2 months behind, naturally, because they were born two months early...simple math right?
At around 18 months we started noticing Luca was on a fast track to typical development and Leo had somewhat stalled. We kept a close eye on it and just kept reminding ourselves that although they are identical twins, they are their own individual person. Our concerns grew as Leo seemed to not really be present, he was more than a loner, he was in his own little world, unbothered and uninterested in most things that we thought would get his attention. We even took him for a hearing test to check if he was hearing impaired because he did not respond to his name, ever. He did however perk right up to the tune of Sesame Street playing in the background, so we had confirmed he could in fact hear. He just couldn't process or respond to specific sounds like other kids around him seemed to do.
Red Flags become a Reality
At this point, I'm holding the red flags in my pocket, just ready to throw them out. We made appointments for different tests, frustrated that the soonest we could be seen was in two months...May 2017. Around April, when promotion and celebration of Autism Awareness was everywhere, I knew it. That "mom gut" that everyone tells you about kicked in, and I self-diagnosed my child with Autism Spectrum Disorder.
The May appointment had finally come, and as I packed enough snacks and milk to hold him through the 3-hour (Early Steps) and 90-minute (Developmental Pediatrician) appointments, I had the biggest pit in my stomach, which only worsened with the initial analysis of the Early Steps team.
“The Early Steps team cannot officially diagnose,
but based on their findings, recommend you see a specialist.”
Our amazing Dr. (aka My Quarterback) was referred to us by a fellow mom friend. Within 15 minutes of the 90-minute assessment she diagnosed Leo with ASD. With the diagnosis came a certain numbness that’s hard to describe, and of course the ever daunting “now what!?” and “why my baby?!”; followed by uncontrollable tears as I watched him sleep that night. We were given many packets of informational pamphlets, lists of therapy agencies to call to set up more appointments, and sent on our way.
The Path to our New Normal
After some trial and error, we finally found a team of therapists that worked for Leo. Taking him to his 30 plus therapies per week felt like a full time job, but we took shifts and made it work because we just had to. We followed our mom and dad guts, and took every day one hour at a time. We made hard decisions and shed lots of frustrated tears. For the most part, we knew we had to get on the right path, not only to help Leo adjust to his new “normal”, but to educate ourselves, his twin brother and our friends and family on all things autism.
Autism is a spectrum, and there is really no better way to describe it. I’m learning that every person is different, has their own sets of triggers and quirks and most importantly has their own needs. Mostly, though, they just need to be and feel loved, understood and accepted.
Leo’s Occupational Therapist gave me the sweetest gift one Christmas. It was a little key-chain that said,
“I am his voice and he is my heart!”
There are no truer words, and I would not change him for the world.
How can you help?
Also, come out on April 5th and join Leo and his family at this event for the Arts for Autism foundation.