And no, I’m not talking about the La Usurpadora reboot. Although if I were to be asked, I’d have to confess to thinking that Gabriela Spanic was pretty iconic as the twins in the production she starred in, and therefore no other Paola need apply. Sadly, as much as I’d rather be talking about plot lines for something that wasn’t really happening in my own life…we have far too much going on to even watch that sensibility scandalizing remake to determine if it has merits of its own.
I’ll just get back to our reality then: the quote from today’s title comes from what Tony said on his speech device when I told him it was time to say our final goodbye to Ms. E during his last therapy session with her. For those of you reading on our blog for the first time, Ms. E was our son’s fantastic physical therapist for a little over two years, and two weeks ago she left her position at the clinic he has been receiving those services at to seek opportunities elsewhere.
My son has honestly been heartbroken. Often I talk to people who think that being diagnosed with level 3 Autism (as Tony is) precludes an ability to bond or attach. I’m not even sure for some that seeing him cry himself to sleep two nights in a row after his last session with Ms. E, or any of the other manifestations of emotional disturbances we’ve been witnessing related to this event, would be enough to convince them. Sometimes people just seem to want to see a narrative that fits their beliefs, and not the facts.
He’s been a disregulated hot mess over this loss, and he probably will be for another couple of weeks. And no, it’s not just because his routine or schedule is changing. I’ve seen enough of all kinds of transitions and changes with him to tell you that he clearly loved working with Ms. E, is pretty unhappy about the change, and misses her. All of this feels pretty scary for him because he doesn’t have any ability to change what is happening. He has been pressing the Ms. E button on his device when we were talking to other people. If he had his way, she’d be back.
I have also seen how Tony reacts when he doesn’t like a therapist. Let’s just say you can’t miss his “don’t let the door hit you on the way out” mentality with those unlucky individuals. I say “unlucky” because I have to recognize there are some definite challenges involved in working with our little man if he doesn’t like something about a therapist or their approach. Those are also the only transitions where I’ve seen him not react negatively to a schedule change when a therapist is no longer on our team.
When he loves you, you will eventually know because maybe you get a quick, squeezy bear hug or he starts asking you to play tickles. If he doesn’t like a person, nobody mistakes that one either. Sometimes, I can tell he likes someone but not really be sure to what extent until after they are gone. When Miss C left our ABA therapy team in May, I was expecting some degree of upset because I could tell he was bonding, asking for tickles, and cooperating well with her. But, she’d only been working with our family a few months so I was thinking it wouldn’t be too bad.
The resulting fits of crying and self-harming were breaking my heart also and made it pretty clear that he definitely enjoyed working with her more than I realized. He didn’t start to calm down until a few days before Emily took her vacation for her honeymoon nearly a month later, and then that set him off all over again. What level 3 Autism means for Tony is that sometimes he’s not showing on the outside the full range of emotions he’s feeling on the inside, but they are still in there, and I don’t like it when people just assume things don’t matter to him because of his diagnosis.
The universe was kinder to us this month than it could have been, silvering the gloomy clouds of Ms. E’s departure from our therapy team with an e-mail later in the week letting us know that Miss C had a change in schedule and was asking to work with our family again. I am thankful it gave Tony something positive to focus some of his energies on because I think that has blunted and blocked part of the behavioral storm we could have been facing otherwise.
And that last session with Ms. E …if you know my son, you could easily detect his sadness. The giggles and joy he frequently flashes when working with her only briefly peeked through the emotional gray. He asked for some of his favorite things to do with Ms. E, like the swing and the wagon, but for the most part he seemed too depressed to participate in as many activities as he typically does. When it was time to say that final goodbye, he grabbed his augmentative communication device and hit his “I don’t like it” shortcut button that I put on his front page to make it quicker for him to express negative feelings when he was upset.
I told him that I knew, and I didn’t like it either, but we had to say goodbye. I know that sometimes people think he just hits certain buttons because he memorizes them, but he was very specific when he said his goodbyes to Ms. E. He did not select the “see you soon” button, which he normally does if he knows he’ll be seeing someone the following week. He touched the “Bye-Bye” button only, picked the button for her name, and slowly walked towards the door with a muted resignation.
I want each of you reading this to know what we do- that Ms. E is a kick-butt therapist and we are grateful for the time she spent working with Tony. And I also want you to look at every Autistic individual around you, whatever their level of functioning, with an awareness that a whole universe of emotion can be contained within for them as well as for you. Tony may struggle to give voice to all the nuances of his feelings, in fact I think that is part of why he self-harms and we must continue work so diligently on teaching communication, but he still feels them nonetheless.
Ms. E: thank you for your patience with our little man. I don’t like how sad Tony has been since you left, because as a mom it wounds my heart to see either of my children grieving so intensely. But I understand and respect that you have to do what is best for yourself and your family. As we ride out the accompanying behavioral storm, we wish you every success and happiness of your own.
