It has been years since I've given an official update on Colton. I share him on social media, so I guess that's been my way to update people on life with Colton...but I think it's time for another post so that I can share some things that have happened in the past year. So here goes...
In the summer of 2024 (Colton was 8 years old), Hunter and I were asked to attend a meeting to discuss Colton. We both showed up and met with the Principal of his school and his Occupational Therapist, both of whom we know and love. In that meeting, we discussed some of Colton's behaviors in depth. I could tell they were a little nervous. They told us that as Colton has gotten older, some tendencies that he has don't quite align with just a Down syndrome diagnosis. Some areas of concern were: Repetitive movements (rocking, hand flapping, spinning), echolalia (automatic repetition of words or phrases heard from others), scripted conversations, vocal stimming, and visual stimming. These behaviors were becoming more obvious with age and in that meeting, they recommended we get Colton tested for Autism Spectrum Disorder.
To be completely honest, I didn't see that coming. I handled it well on the outside, but on the inside, my heart sank. One diagnosis seemed like enough...and now we were going to possibly add another one? Really!?! I just felt defeated. I kept wondering how Hunter was feeling but he just kept calm and asked questions. But regardless of our feelings, we always want what is best for Colton, so we told them to schedule the appointment and we'd absolutely get him tested. As we left our meeting and walked to the parking lot, tears began to fill my eyes. Hunter comforted me and said, "Hey, this changes nothing about the Colton we've known and loved for over 8 years. I think it will be a good thing. It will help us to better understand him and to better meet his needs. It also explains a few things that we've been struggling with and maybe we can get some help." I was so grateful for his perspective and positivity because I thought he'd be crushed, too. But he wasn't...and he was right. This wasn't the end of the world. We've done hard things before and we could do this, too.
The fall of 2024, Colton was officially tested for Autism and a few weeks later, Colton was diagnosed with Autism (Level 3).
My precious boy now has a Dual Diagnosis: Down syndrome and Autism Spectrum Disoder. Can this happen? Absolutely. While not super common, 16-18 percent of people with Down syndrome have Autism. It's a spectrum and people each have their own unqiue strengths and challenges. Colton has always been very social and will look you in the eyes. He loves to cuddle and lets us love on him...but he struggles to have full conversations with people and he struggles with initiating play. His stimming can get very loud and sometimes people look at him strangely. He is obsessed with his "doctor" right now, so it goes with us everywhere. Stimming helps Colton self regulate when things are a little chaotic for him.
It was recommended that we give ABA (Applied Behavior Analysis) Therapy a try for Colton. Colton's school doesn't have an ABA Therapist on staff, so we had to reach out to another therapy center. It took a little while to get the ball rolling, but in August, at the start of this school year, Colton began ABA Therapy. The best part about ABA Therapy is that they send an RBT (Registered Behavior Technician) to Colton's school daily and she sits with Colton in the classroom from 8-11:30, Monday thru Friday. They work on things like completing tasks, interacting with peers, increasing vocabulary and sentence length, asking for help, taking turns, requesting attention, etc... He has reward charts that help with motivation and cooperation. The RBT who comes has a BCBA (Board Certified Behavior Analyst) that writes a treatment plan for Colton and then the RBT implements the plan. The BCBA is a woman who has met with me, Colton, and his teachers and she comes to work with Colton occasionally. She also does a Zoom meeting with me every other week to train me on things they are doing to help Colton, and to give me feedback. So far, it has been amazing!!! A few weeks ago, one of Colton's goals was to go around and ask kids on the playground to play Duck Duck Goose and then his RBT helps him play this game and interact with his peers. Colton seems to really enjoy his RBT and BCBA. I'm so grateful for their help and expertise. The goal is to increase desired behaviors and decrease unwanted ones to help Colton to learn and function more independently.
Colton has a team of people helping him every single week: speech therapist, occupational therapist, physical therapist, classroom teacher, teacher's assistant, an RBT, and a BCBA. We are so incredibly grateful for our village. I couldn't ask for a better group of women. They mean more to me than you'll ever know. It's been a hard year. A new diagnosis, a death in the family, an injury (me)...but we are making it, one day at a time. Colton might have Down syndrome and Autism, but he is his own unique mix of awesome, and we are doing everything we can to help him live a happy, successful, and independent life.
