Over the last few months, I have noticed changes in Kay’s overall behavior. At first, I assumed it was related to her diabetes since blood sugar fluctuations can affect mood. That still might play a role, but it became clear there was more to it than that. I found myself researching and trying to figure out who could help us better understand what was going on and how to best support Kay.
Her moods became unpredictable, and transitions from one activity to another started becoming much harder. She would become upset, frustrated, and angry, and at times, it felt like she was reverting in some of the areas she had previously made progress in. This was confusing because Kay had done so well during summer school. Her teacher had even complimented her on her improved listening skills and how she was following along with the class without needing someone to hold her hand. It felt like such a huge win, but lately, it seems we are backtracking and facing even more challenges than before.
Kay’s teachers have shared that she has been having a harder time at school. She has been dumping toys out of bins, throwing them across the room, getting out of her seat, turning off the lights, and struggling to follow instructions. As her mom, it has been overwhelming and disheartening at times because I just want to help her, yet I have felt at a loss for where to turn next.
My first thought was to request referrals to a behavioral therapist. I wondered if Kay might have ADHD or something similar. I was not looking into medication since she is still so young, but I hoped for answers and guidance. Unfortunately, finding the right support turned out to be another uphill battle.
That is when I started looking into an assessment for Autism. It is not uncommon for individuals with Down syndrome to also be on the Autism spectrum, and because Autism presents differently for everyone, it can be difficult to recognize. The challenge, however, is that getting an evaluation is not always easy. In Las Vegas, as in many other places, there are limited options and long waitlists.
I decided to submit Kay’s information to one of the main organizations here, knowing that even if it took a year, we needed to start somewhere. Around that same time, I learned that the wife of one of my dad’s coworkers had recently opened an ABA clinic that also offers Autism assessments. I was already planning on connecting her with resources for families who need ABA, like nonprofit organizations and social media groups, but I also decided to apply for an assessment there for Kay. I figured that even if this was just one step in a larger process of elimination, it was worth pursuing if it could help us find the right support for her.
Yesterday, we had Kay’s appointment, and the results showed that she is level 2 on the Autism spectrum. While this information feels like a lot to process, it also gives us clarity and direction. With this new diagnosis, I am starting the process of getting Kay approved for ABA therapy and figuring out how that will work alongside pre-k. I am also thinking about the next steps as we prepare for kindergarten since these next few months will fly by.
This adds another layer to Kay’s medical journey, but it does not change who she is. Kay is still the same bright, loving, and amazing little girl she has always been. What it does change is how I advocate for her. My focus will always be on making sure Kay has every resource and opportunity she deserves.