We begin tonight’s update with this clip from The Muppet Show. Go on, take a moment to watch it. You won’t be sorry. https://www.youtube.com/watch?v=1MnX1wT7BRU&t=7s
This, my friends, is the soundtrack of Isaac‘s life. Not just because Isaac has watched this many, many times a day, every single day, for the last five years. (This seems like a good moment to share a favorite meme of mine. That’s right, folks. You get youtube videos and memes tonight. This email is quickly becoming an exciting multi-media event!)
Okay, so, I was saying. This song isn’t just the soundtrack to Isaac‘s life because he is obsessed with it and watches it constantly, but also because it is a fantastic description of Isaacchimself. Oh, the windmills of his mind! Even if he seems calm on the outside, this is what is happening on the inside.
Today in our meeting with Isaac‘s psychologist and psychiatrist, I learned a fun new phrase: Schizoaffective Disorder. It is Isaac‘s latest and greatest current official diagnosis (on top of autism, anxiety disorders, and OCD, of course). Schizoaffective Disorder is not quite schizophrenia and it’s not quite bipolar disorder, but it looks like a combination of both. The more I’m learning about it, the more I think YES!!! WE ARE FINALLY ONTO SOMETHING THAT FEELS LIKE A REAL FIT!!! (For the curious among you, you can find out more here: https://en.wikipedia.org/wiki/Schizoaffective_disorder)
Also added to his list of diagnoses is a word I knew but had misconceptions about and had never really considered (even though one of Isaac‘s previous psychiatrists briefly mentioned it before): Tourette’s. Isaac‘s psychologist brought it up today and described what we have seen Isaac do millions of times, but we’d always chalked it up to autistic stimming. As we continued to talk about other aspects of Tourette’s, we heard our boy described over and over again. Mind. Blown.
Do the labels matter? Maybe, maybe not. I’ve had friends and loved ones over the years who don’t want to hear any labels applied to their children. That is their right and they have their reasons. However, what we have found, ever since Isaac was a tiny baby carrying a PDD-NOS diagnosis (which was upgraded to Classic Autism as soon as he was old enough to carry that hefty label) is that LABELS OPEN DOORS. Doors to proper therapy, doors to insurance coverage, doors to appropriate, individualized education, doors to compassion and understanding, etc.
Doors that we need flung open.
But. What do these labels change? Well, they don’t change anything about his personality. He is the same person today that he was yesterday, pre-labels. They also, unfortunately, don’t help with treatment plans. You see, the way you treat Schizoaffective Disorder and Tourette’s is, in fact, the same way you treat schizophrenia and psychosis. Yup, all the same stuff we’ve been doing, and all the same stuff that hasn’t worked.
But if nothing else, the labels give us a glimpse into the windmills of his mind. Holy cow, these are some serious windmills!
We’re continuing to hold out hope for this new medicinal treatment that they are still in the process of implementing. It is too soon to have any idea if it’s going to work, but it seems in line with all of these new diagnoses and continues to look like a possible winner.
Other highlights of our visit with the psychologist today were my awesome moments of personal eloquence. The topic was that after Isaac is released from the hospital, he will receive therapy. This therapy will not only help him, but it will help us be better parents who can play therapist in between actual therapy visits. He then mapped out some of the things that we will learn as we work with therapists. You know, EXACTLY THE THINGS I HAVE BEEN DOING.
What I tried to say: “This child has been in one type of therapy or another since he was 14 months old. I have sat in on literally hundreds of therapy sessions. I have been trained by dozens of therapists over the years. These days, when we’re at home, Isaac receives two hours of therapy every single weekday. I meet with his psychiatrist every two weeks. I meet with his RDI/ABA team every two weeks. I’m already doing everything on your sheet of paper. It is clearly not enough. I cannot sanitize and organize our lives like the hospital does with its danger-free rooms and its strict hourly schedule. Real life is messy! I have three other children who have their own big needs. My husband travels for a living and is gone a lot because at least one of us needs to be gainfully employed so we can pay for all this freaking therapy. I cannot do more than I’m already doing without sacrificing things and people that are equally important! There is nothing left that is sacrifice-able!”
What I said: “I’m so tired.” And then I broke down crying.
Yeah, that didn’t entirely convey what I was hoping to convey…
And, unfortunately, I think those words led the psychologist to believe that maybe I was looking into residential therapy for Isaac (after his release from the PPH–one of many possible treatment plans we’ve discussed) because I need a break from being Isaac‘s mom. Oh golly. Nothing could be further from the truth.
Well, hopefully I can help him see that we are all genuinely on the same team. I trust the doctors to be on Team Isaac. Hopefully they can trust that I am too, despite my total lack of verbal prowess.
We are so grateful to you all for your patience, insights, love notes, prayers, and support. xoxox