Autism Awareness Month: My Personal Journey as an ASD Mom

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The actual diagnosis of autism is nothing new to the medical field. But it seems that we are learning and becoming more aware of this disorder as years and studies progress. It has been reported that The Autism Society was the first organization to launch Autism Awareness Month as a nationwide campaign back in the 1970s. Later, it was adopted by Congress in 1984. But it wasn’t until 1999 that the autism awareness ribbon was released becoming a national symbol of autism awareness. It’s 2020 and still, autism is still a subject of taboo without clear definition. And a spectrum to large, they had to add it to its name!  

Autism Awareness Month: My Personal Journey as an ASD Mom Krystal Giraldo Contributor Miami Moms Blog
Clipart By: Lisa Parnello

Proud (Autism) Momma 

Prior to becoming an autism mom, I would be lying if I said that I didn’t treat autism as if it were a bad word. I say this with as much transparency and love as I possibly can. 

My son, JJ, was diagnosed with ASD, autism spectrum disorder, at the tender age of 17 months. I will also state that this diagnosis came with a warning. Signs and delayed milestones alone were an evident indication that I needed to get him at least screened. But JJ’s birth was so traumatic that we were warned that autism was a huge possibility and something we needed to pay extra attention to. 

I didn’t find out that I was pregnant with JJ until I was already very pregnant and had very little prenatal care. If you read my introduction post, I pointed out that I very well could have landed a part on TLC’s ‘I Didn’t Know I Was Pregnant’. I learned I was 24 weeks when I attended my first prenatal appointment. CRAZY! I know! What’s even crazier is how terrified I was. I questioned and doubted everything. And it took my water breaking to put me in this uncanny ease.

36 hours later (you read that correctly, THIRTY-SIX HOURS) and my son made his grand entrance into the world! JJ was a full-term baby, born at 38 weeks. In gestation and after a number of prenatal specialist appointments, he was deemed healthy. But the traumatic labor, lack of oxygen and fever contracted by his momma changed this “healthy baby” into a resident of the NICU for 2 of the longest weeks of my life. 

Autism Awareness Month: My Personal Journey as an ASD Mom Krystal Giraldo Contributor Miami Moms Blog

 Specialists and Appointments and Therapy, Oh My!

While in the NICU, we were visited by a team of specialists every 8-12 hours. We were also in the best possible hands we could have been! (Shout out to all NICU nurses! You all are walking angels!) It was during one of those rounds that I learned that once JJ was released we would have to be under the intense care of a neurologist. The head specialists told me that because of his lack of oxygen while being stuck in the birth canal for so long, there was more than likely going to be complications. Complications is one of those words no new mom, experienced mom, foster mom, stepmom, ANY MOM wants to hear. And so our journey began.

JJ was about 8 weeks old when he had his first neurologist appointment outside of the hospital. We were lucky enough that the same neurologist who followed him while progressing in the NICU remained his neurologist after he was released. Up until his first birthday, we were required to come in every 4-5 weeks. These visits were more for status and to make sure JJ was reaching all his milestones. Which at this point in his life, he was. We were then excused from our usual appointment schedules and told to come every 6 months. While keeping in mind that there was a possibility of regression. You can find a list of the things to look out for here

Autism Awareness Month: My Personal Journey as an ASD Mom Krystal Giraldo Contributor Miami Moms Blog
Our first Autism Awareness Walk in April 2019

Early Intervention

JJ did in fact regress. At about 14 months, I found it strange that he wasn’t walking yet. He was also failing to respond to his name. And tended to be in “his own world” when he was playing with toys. It prompted me to talk to his pediatrician who then referred him to a genetics doctor. There was a series of blood work (for JJ, Daddy and me) and screenings. The genetics doctor then referred us back to the neurologist for a formal diagnosis. This is where I learned that a pediatrician, pediatric neurologist, pediatric psychologist or psychiatrist were the other doctors able to make a proper diagnosis.

Please keep in mind that Miami-Dade County has many organizations dedicated to proper and affordable (sometimes FREE) screenings. Do a quick Google search on WHO does them and WHERE they are located. Remind yourself there are professionals who can help you with this. We were urged to start early intervention as soon as possible. All I could think was, how? How was I going to find the time to do all of these therapies? All while remaining employed full-time, housekeeper to my boyfriend, stepmother and new mom to a child with autism. This is when the power of your village comes into play!

YOU GOT THIS, MOMMA!

I cannot stress to you enough as a mom how CRITICAL it is for YOUR CHILD to enroll and attend all the early intervention therapies that are available. There’s Early Steps, ABA (applied behavioral analysis), OT (occupational therapy), PT (physical therapy) and speech. You can contact your child’s insurance provider and pediatrician and they will be able to provide a service provider for you. In JJ’s case, we were able to have 2 of his therapists go to his school during the day and speech therapy would be a certain amount of days per week, after work.

It’s hard. The hours of therapy are long. The schedules are tight. But I can assure you, your child will thrive and succeed. And do all the great things that they were brought to this earth to do. Just because someone takes a little longer to do something. Or maybe they do it in a completely different way than you. Or maybe they need a little extra help to do it does not make them any different than you and me.

Swingset Krystal Giraldo Contributor Miami Moms Blog

Through this journey my son, along with the other thousands of people with ASD, have proven to be some of the most patient, kind, loving and capable people I have ever met. Disability does not mean inability. With the right kind of therapy, patience, and love we can ALL help the ASD community be stronger and better than ever.

 

6 COMMENTS

  1. Thank you so much for letting us into your family, and sharing about your son! “Disability does not mean inability” — love that!

    • Thank you for reading, Becky! I hope this is just a little bit of a push for any parent whose struggling with this!

    • Lorena, thank you so much for being such a great friend to me and welcoming our family into yours. We love you guys! Thank you! Big virtual hug till I see you again!

  2. You are so strong and it’s inspiring to read what you’ve overcome, been through, and you’re helping other moms by letting them know they’re not alone. Glad to hear therapy works! ❤️❤️

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