This morning I find myself overcome with a feeling of sadness, positivity, and nostalgia... all at once.
Jack was diagnosed in November of 2009. In October of 2010, we started in home ABA behavior therapy. On Saturday, 3 1/2 years later, that therapy will end.
I want to write about two things in this blog today. First, what was the benefit of behavior therapy, and why we agree that it is time to move on to the next stage. Second, I want to thank the therapists that have been in our home, and part of our family, through the years.
My wife (Julie) has written before about how she felt we were "destined" to have Jack. You can read her words here. To paraphrase what she wrote so eloquently, there were lots of things in our lives that set us up to raise Jack. My father is a pediatric physiatrist. My sister is an OT, and her college room mate was an ABA therapist... So we were well prepped on what to expect from ABA therapy. I don't want to go into what ABA therapy entails here... it's a lot.
But I do want to tell all of you what we got out of it, and more importantly, why we are willing to let it go. Put simply (VERY simply) ABA therapy is directing instead of following. Stay in front of your kid, so you don't get behind him. "We're walking close to the grocery cart" rather than "Don't touch the peanut butter". To do it correctly takes a lot of time, a lot of patience, a lot of heartache, and a lot of "training"... TO THE PARENT/CAREGIVER.
Jack is by no means "cured" of his autism, or maladaptive behaviors, but Julie and I are as educated and trained as we can be to guide him through them. To understand them. To truly empathize with him. And, quite possibly, "correct" them.
Autism Spectrum Therapies gave us those tools. They aren't paying me to say that. I want to endorse this company (which is nationwide, btw). Their mission statement is clear. Their therapists are educated and fantastic. Their supervisors are glowing.
So thank you to AST for servicing us. It is because of your company that Julie and I truly feel we have the tools to move forward on our own.
One of the most wonderful (and humbling) things about raising a child with special needs is the people that will come in to your lives (and homes) for your children. It is amazing that there is someone out there that loves your child so much to make a difference.
I want to thank three. Actually, I want to thank four, but our current therapist is really Julie's (as they do sessions on the weekends now) and I'll leave that to her.
(ed. note - I am not using their real names, but the pseudonyms are loosely disguised as I want these ladies to read this)
Terry - Terry came into our home as our first "full-time" therapist. You have to remember that I (the father) was home for most of the sessions. The father is the primary caregiver for ABA sessions around 8% of the time, so we were already a little unique. Terry taught me and Jack the ABCs of ABA. She was bright, had a wonderful disposition, encouraging, corrective when necessary, and thorough. Most importantly, she truly loved Jack. So many sessions were spent with Jack on her lap, showing her how "Handy Manny" wanted to set up his town (pretend play). Terry was soft and loving... which is exactly what we all needed at that point of therapy. We will never forget you. I remember there was a brief phase where Jack's reward was making "sound bites" on an application on the iPhone. He would record burps and farts and buzzer sounds. And one day he recorded this:
Terry: I love you.
Jack: I know.
And on the hardest days... I still play that sound bite today.
Thank you for loving my boy so much.
Karlie - Karlie came after Terry. She was brilliant, young, and enthusiastic. She found Jack fascinating and funny. She loved him. She came at a time where we were encouraged to "go out" in the community, and we did. We went to the grocery store and Target and the park. Karlie was the most interested in what made Jack "tick" of anyone. She was equally fascinated with him as he was with her. And she got promoted to supervisor deservedly because of this thirst for knowledge. Karlie also handled me well. When we had a break she would talk to me about the Dodgers. She was curious about Julie's job. She was just "going places".
Karlie, thank you for loving my boy so much.
Stacia - Stacia is the therapist we had for the longest period of time. She was the toughest and strictest. She had absolutely no problem telling ME I was wrong. She definitely taught ME the most of anyone. She was the best therapist I've ever met. We fought to get her. We fought to keep her. She was brilliant and never afraid to try new things.
Stacia was also with us at the toughest time. Stacia had to endure the "aggressive" year. Stacia got punched, kicked and bit right alongside me. Stacia stayed late to finish the "90 minute / 104 acts of aggression" meltdown with Julie... because she cared. We had her in some capacity for about 2 years. And despite her tough/rigid exterior, every once in a while, I would catch her saying simply "Jack, can I give you a hug?" because she was overwhelmed by Jack's charm.
What Stacia probably doesn't know (or at least adequately) is that she saved my life.
There were some tough times in that year. Stacia is the only therapist that has seen me cry. Stacia is the only therapist that has seen me throw my hands up in the air and say "fuck this"!
And she NEVER gave up on the boy.
And she NEVER gave up on me.
And I will NEVER forget that.
Stacia, thank you for loving my boy so much... But thank you for believing in him... and me... even more.
If you're new to this journey we call autism, I want you to take away from this article that you are going to meet some amazing people in your life. People that you would have never met had you not had a child with special needs.
People that will champion your children forever.
Thank you, ladies. Julie, Jack and I love you.