The Breaking Point
It all came crashing down on an unsuspecting Thursday. Lucas had stayed up far too late the night before, tossing and turning in his crib, exhausted and too over- stimulated to sleep. Then he woke up too early (6am). Sleep begets sleep. But I was still in a good mood because Thursday meant NO ABA TODAY! I was so excited to load him in the car for his short one hour co-treatment for speech and OT. And then halfway to our destination, I look back in the mirror and see that Lucas has fallen asleep. At 8:45 in the morning. Naptime is at noon. What was going on?! Unsure of what to do, I just stayed on autopilot and kept driving. I put him in the baby carrier and he stayed asleep. I gently tried to wake him. Nothing. So I just walked into our therapists’ lobby to check in like normal. I was just too exhausted and baffled to formulate a plan. When Pam (one of my very favorite receptionists) looked up at me to check us in, my face must have said it all.
“Are you ok?” she asked. And then I just dissolved. In a lobby full of parents, children, and therapists, I became hysterical. Pam was obviously shocked and followed up with “Oh my God! Is he breathing?!” motioning to Lucas asleep on my chest. “Yes. I’m so sorry. I don’t know why I’m crying,” I sputter out and she leads me to the back.
His Tuesday OT, Miss Courtney follows us into an empty treatment room. There I am bombarded with hugs, tissues, and kind words. Then Lucas’ speech therapist walks in with a concerned look. Then Lucas’ Thursday OT comes in and a supervisor. These women spent an hour with me in that room. They let me cry. They listened to all my fears. I just kept saying that I didn’t know what I was doing. Was I doing the right thing? Are these people trying to take advantage of us? Am I doing more harm than good for my boy? I was sick of picking up a screaming toddler and being told by a very young, not the most engaging therapist that “He was pretty grumpy today” (consistently leading with the bad) and then handing me a half-assed attempt at a communication log and very little verbal report (after one of his regular one- hour co-treatments, the therapist here usually give me a ten minute, detailed brief about his day AND they always lead with the positive). I was tired of reading “Lucas ate chips” and being told that he wasn’t hungry, but then he would come home and devour the fridge. I didn’t sign him up for daycare! Lucas’ speech and OT team replied with advice and knowledge as professionals, but also as a team who has known Lucas for six months now. He loves them, and they love him. I left feeling heard and also physically and emotionally exhausted.
Feeling the Strain
On our way home I received a call from the Operations Manager at our ABA center wanting to know if they would be seeing Lucas today. I was confused. “I’m sorry. Lucas is on a Monday, Wednesday, Friday rotation,” I answered. She replied that she was under the impression that we were going to try and move his speech and OT schedules around so that we could schedule Lucas for an additional day of ABA each week. I told her that we had mentioned it to her at some point earlier last week while brainstorming ideas for Lucas’ treatment hours, but that nothing had been confirmed. She apologized and said that I was correct. I took this phone call as an opportunity to voice my concerns. I told her that, to be completely transparent, we were struggling. We knew that there would be growing pains/ transition period and we were prepared for that. But I was not prepared for these aggressive behaviors to become so persistent, with tantrums lasting as long as one hour. I was tired of dodging bites and holding down my toddlers arms so that he can’t hurt himself. She said that she was glad that I was honest and came forward with my concerns. She would be putting me in contact with our BCBA for some parent training soon.
The next day after picking Lucas up from ABA, I tried to lay him down for his nap. Instead I went to war with a two year old. It was the worst display yet, with extreme self- harm behaviors (the worst I have EVER seen from my son) and a new strength for harming his moms. He was SO EXHAUSTED and so angry. There was no calming him and I actually filmed his episode. When I had a moment, I texted the video over to the Operations Manager and said,
“Lucas’ overtired episodes have escalated to an extreme. I couldn’t even film the worst of it. His aggression has been out of control and I fear we pushed too hard. I know we are in a transition period and things can be bumpy, but he is totally different the last two weeks and we are worried. The whole reason we cut back on hours was so that we would avoid him being overtired. But it looks like we are still missing his sleep cues and by the time I pick him up, it’s beyond the window of nap opportunity and into overtired- land, which is an up hill, tooth and nail battle. I’m just at a loss.”
“Oh gosh, Mrs. Taylor I’m so sorry. I am sending this to our clinical team right now and you will receive some quick feedback today. We’ve definitely seen this and can help! If you don’t mind, I’m going to share the video with them. We will do whatever we can! Thank you for reaching out with this.”
I quickly (within 5 minutes) got a call from a BCBA who was subbing in for our regular assigned one. She talked to me about how normal this was and that she would like to come over and do in-home emergency parent training the following business day (Monday). I was feeling so lost, and agreed.
On Monday, Lucas wouldn’t nap AGAIN, so I just kept him calm and didn’t push the issue. He was a perfect angel for the BCBA and didn’t display any maladaptive behaviors (reminiscent of when you go the ER for excruciating pain only to have the symptoms subside the second you check in). She gave me some tips and scheduled me for more in- center parent training on Wednesday. At my scheduled training, I sat through a mind- numbing slide show and got very little usable information. Then they scheduled us for another home visit on Friday.
After that slideshow, I felt the urge to check in with Lucas’ developmental specialist (the one who gave him his diagnosis and recommended ABA). I let him know that we were giving ABA two more weeks to work out the kinks, and if the behaviors got worse, we were going to call it. It was a novel of an email and he replied within the hour, asking what would be a good number to reach me at? He called and spoke with Dayna and I, apologizing right away, “It was always my intention that Lucas receive in- home therapy. I am a huge believer in in- home ABA. Center- based can work, but more often they take the place of preschool (which is exactly how I was feeling with all those diaper charts and meal-logs). He zipped me over a very short list of places that he knew of in San Antonio that were indeed still offering in-home therapy (which was great and also a bit tiresome because where was this magic list when we started?! But onward and upward) and I went ahead with the calls.
I remember that it was a Thursday. Exactly one week since my public meltdown. I sent Lucas into his therapy session, then sat in my car to make some calls. The first therapist I tried was a bust, but the second phone call was gold. I spoke with a lovely coordinator who informed me that: yes! They have openings! No waitlist! She conducted an informal phone interview then and there and once she heard that we were leaving a center- based program and that we were feeling pretty burned, she jumped into action. “I’m going to send you a welcome email with the name of your new BCBA. They will give you a call very soon to make sure that we are a good fit for you and to answer any questions you may have about our program. I know that this can be overwhelming so I just want to give you some peace of mind.” I wanted to jump through the phone and hug her.
After a long conversation with our new BCBA, I felt my hope renew. Not completely- still guarded, but that phone call did give me confidence in our decision to go ahead with this new therapist. That feeling was temporarily overshadowed by the dread and anxiety I felt when I realized that now I had to break up with the center.
I typed up the break up letter and received their reply quickly. And then, as quickly as it all began, it was over. We were free. No more center. I could hardly believe it. Yes, I felt dread and anxiety while formulating the message, but I did it and now we never have to go back.
Many teens and adults with autism do not believe in ABA. In fact many are adamantly anti ABA, and after our experience at the center, I can see why. That being said, we are going to give it one more shot. However, this time around, we are going into it eyes wide open. I already feel one hundred times more confident in our new therapist’ professionalism and experience. No red flags in sight.
As we gain distance from the center experience, a silver lining has appeared. So many of our friends and family have voiced their admiration that Dayna and I stood our ground when we felt that something wasn’t right. Instead of forcing the treatment, we took cues from our son who was so clearly rejecting the therapy. We truly believe that being able to receive therapy in his comfort zone will diffuse a good majority of the behaviors/ side effects that we’ve been experiencing. And the best part, I have my boy back. About a week out of the center I saw his behaviors improve and his trust and security restored. And I couldn’t be more proud of him. But even more, I’m proud of me. While Dayna was a huge support every step of the way and I could not have survived this without her, a lot of the work fell on my shoulders.
I took Lucas in for his diagnosis. I researched therapy centers. I made the phone calls to the insurance company for referrals. I chased down Exceptional Family Member Program paperwork. I communicated concerns with therapists and demanded more. And when they fell short, I reached out to his doctor and asked for other options. I wrote the email and ended our business with our center. I contacted ECHO when we needed to cancel and switch referrals. I called our new therapist and I set up a home visit. I filled out the 10 page client intake form and did the PDDBI assessment (188 questions about Lucas’ development) TWICE. Me. Olivia. I did it all that. I never expected to be such an advocate for my son. But I have always been an overachiever. So this is right up my alley. Challenge accepted.