Progress

Wow…one year ago today we shared with the world that Desmond Fox had been diagnosed with autism – a date I will never forget: 3/22/2017. One year ago, we let you have a little glimpse into our life through this blog – what we were struggling with, the good and the bad moments, and the feel-good moments like moving home to Indy! We’ve not written as much as we’d probably have liked to as life has just been happening and we’ve been busy being present with Desmond and our families and friends, getting re-integrated back in Indy. Given that today is World Autism Awareness Day, I thought it was time to post a recent update on Desi Fox.

We just had Desi Fox’s first parent meeting at Cornerstone, giving us progress updates and sharing videos of the programs/goals that he had mastered. I cannot explain how amazing it was to sit there and see him making progress with his Behavior Therapists. He adores them, and they quite obviously adore him. What I think is so great about Cornerstone – is that they first learn how he learns best – and from there, they implement his target goals (aka his programs)! I have always been a strong advocate of teaching to the child’s learning style vs. state mandated lesson plans that are the same for every single child. I’d love to share Desi Fox’s progress with you all!

A little background: Desi Fox attends Cornerstone full time, 7 hours a day. He has 3 therapists – one in the am, one over lunch time, and one in the afternoon that he gets to work with along with his BCBA of course, who sets his programs or targets. What is a program? Well, a program in ABA is like a goal. An example of this for Desmond would be “Points to toy or object of interest” and from there, they build upon it to maybe “Mand for toy or object of interest” or “Interacts with 5 different play items within 30 minutes”. Mand is a term that was coined by Psychologist, B.F. Skinner in the 1950’s that means, “An utterance aimed at producing an effect or result” (oxforddictionaries.com). In other words, Desi is verbalizing somehow or communicating that he wants x object or thing. Desmond successfully mastered out of 74 of his VB-MAPP programs since 1/31/18 – and has mastered out of at least 5 more in the past week! He now says “Mama” and “Dada” and he uses American Sign Language to sign for “Dad”, “more”, “show me”, “iPad”, “all done”, “go”, “ball”, “milk”, “please”, and “light on”.  He’s working on making a wide variety of sounds engaging different areas of his mouth, and he’s rocking it! Overall, he’s having a blast being Desi Fox, spreading his laughter, joy, and charisma all around. He has quite a few friends at Cornerstone and has become a social butterfly, engaging many children at the center with joint play. If you recall, he used to not be able to joint play at all, let alone want to engage anyone else around him in anything. This was one of our earliest “red flags” for autism, looking back on it. As you can imagine, this large amount of learning and play and social interaction has also caused him to regulate his overnight sleep schedule. He’s now sleeping a good 7-10 hours overnight on average. Sometimes he still wakes up once overnight – especially if he hasn’t eaten well during the day or when he’s sick, but we deal with that as it comes. (Sidenote: I thought you all were lying when you said kids really start getting over the ‘being sick every other week’ stage around 1 year old. For us, it took until about 2 years old – but I think we are there now.)

Regarding Desi Fox’s eating, he is still super restrictive, but we are seeing more and more progress there as he’s now totally fine with non-preferred foods on his plate, and touching and smelling a wide variety of foods. He may not eat them, but he experiences them and is okay with that for now. He will sometimes surprise us by randomly taking a french fry off our plates to try. That’s a huge win / success for us when that happens. We still offer him foods that we are eating – if anything, just for exposure purposes. 9.8 times out of 10 – he won’t eat anything outside of his preferred list of foods. Though, truthfully, now that I’ve had some time to reflect, I find it interesting that I too am a restrictive eater. I usually eat the same things for breakfast and lunch and sometimes switch it up at dinner. I’m not a huge meat person – Desmond still to this day has never had meat – I may eat it once a week, but it’s not an everyday food for me. I prefer peanut butter, graham crackers, and yogurt as daily staples in my diet. Well, guess what Desi prefers to eat too? At least he always eats large helpings of strawberries with his! All that to say, I’m trying to worry less about food intake, and worry more about Desi Fox’s overall health and his personal wellbeing. He’s extremely healthy – still in the 90^th percentile, he’s happy all the time – filled with immeasurable joy with each passing day, and he’s rocking life right now. I’m insanely proud of him, and insanely protective of him. He is the light of my life – my joy – my reason for being. He makes me a better person every single day. I am so grateful for everything that he is teaching me in this life. I look back to where I was a year ago and sometimes I think, “Wow, I can survive anything” and sometimes I think, “I’m not strong enough. I’m not a good enough Mom to Desmond. I need to be better, do better.” Autism is a constant flux of emotions from one extreme to the next. I read this line today from another Mom blogger, Carrie Cariello, and I think it is my new mantra going forward: “We will overcome what we can, and make peace with what we cannot.”

*Update: You guys, today he learned how to sign “push” right after it was introduced to him, he started using it independently to communicate that he wanted “more” “push” on the swing. I. Can’t. Even.

Desmond’s new best friend- a ROOMBA!