Yesterday we found out that we would not be part of the initial intervention therapy that we had hoped for through UTD. I was certain we would get it. I was positive that I would open up the envelope placed in Jacob’s folder and it would be what I wanted to read. My husband even sent me a text about an hour before our scheduled appointment with his words of affirmation: “I have a good feeling about this.” Yes, so did I.
But we didn’t get it. Instead we were classified as part of the other group in the research study. The non-intervention group, or as they call it the assessment group. The group with no intervention and no extra therapy, at least not until the research study concludes in three months.
I wasn’t devastated, but I was certainly defeated. Like the wind slowly leaving a balloon over the course of several days, that’s what the last month has felt like. Hope slowly exiting through the holes of disappointments we’ve experienced. All day I wondered why was I so confident we would get good news. All day I thought about the false sense of confidence we sometimes seem to operate from, the idea that good things happen to good people.
When I look at my Jacob, I can’t picture a more deserving child of all the things I feel like we aren’t able to give him right now: developmentally-appropriate preschool, ABA therapy, extended speech and OT services, in-home parent training. I feel like my child deserves the world, yet I am unable to provide that to him. Inadequacy is the worst.
Jacob is receiving extended speech for the summertime through a pre-verbal communications class at UTD’s Callier Center. He works with graduate students and college professors for 2.5 hours Monday through Thursday. Parents have a front-row look at all things happening in the classroom through the use of a one-way mirror. It’s fascinating. I see Jacob do things there that I haven’t seen him do at home, and just like that hope is generated. I receive stellar reviews from his clinicians about how he’s completed his first week. There is progress from day-to-day, minimal progress but progress nonetheless. We are not allowed to video record or photograph the magic that happens in the center, so I make mental notes or handwritten ones. Yesterday Jacob attended to the same task for 8 minutes. Just last week 3 minutes was the longest his clinician had recorded. He’ll continue this program through the middle of July.
Another mom whose son is in the classroom on the other side of the hallway, engaged in conversation with me yesterday. A handful of parents stay the duration of the class, while others drop-off and pick-up. I watch from my seat in the waiting room. Part of me would love to hear their stories, another part of me wonders if I have the emotional capacity to want to listen. Their stories are probably a lot like ours: lots of emotions, lots of questions and even more fears. But she approached me with conversation, and I engaged. She’s a lawyer, turned partly stay-at-home mom. Her connections to medical professionals encompass the world, as both she and her husband are not from the United States. Our conversation began with conventional chitter-chatter.
How old is your son?
When was he diagnosed?
Is he talking yet?
And then I asked the question I immediately regretted. So, what other kinds of treatments and therapies do y’all do?
It just rolled off my tongue. Our conversation seemed to be headed that way, as she talked about how many semesters her son had been part of the Callier Center preschool program and how happy she was with his progress.
36 hours of therapy with about 10 different professionals per week. That was her answer. ABA. Preschool. Therapists for speech. Therapists for occupational therapy. Therapists for imaginary play. Biomedical treatment.
And just like that my balloon of hope burst. POP! I cried as I left the center yesterday afternoon. All I could think about was the measly 2 hours of therapy my kid gets a week. TWO HOURS! I felt inadequate. I felt like the worst mom on the planet. As I gazed into my toddlers perfect little eyes, I was overwhelmed with shame. How could I possibly tell myself that we’re doing the best we can when all we can offer is 8 hours of therapy a month.
It feels like we’re doing the best we can, but it doesn’t look like it. The incongruence of that statement is not lost on me. I know better than to believe that just because one “feels” something, doesn’t necessarily make it true. I can’t say I did a lot of anything yesterday, other than shed tears. For a couple of hours, we celebrated our oldest earning a scholarship from our local minor league baseball team. Remember, life doesn’t stop because of Autism diagnosis. We left the game at the end of the third inning, and I wasn’t even in the car for more than a couple of minutes before the thoughts and feelings that I had put on pause, resumed.
I have no answers to all the questions I have. At least not yet. I watched Kate Bowler’s Ted Talk tonight as a reminder that the idea that “everything happens for a reason” doesn’t necessarily have to be my truth. Good things happen to good people, but so do bad things. Bad things can and do happen to good people. The amount of “good” or “bad” that one receives is not in correlation to how “good” or “bad” the person is. I read Kate’s book, Everything Happens For A Reason And Other Lies I’ve Loved, about a year ago and its impact was profound.
So, what keeps me hopeful even after facing the tough reality that maybe we aren’t doing everything we can?
Progress: Jacob has learned to put back toys where they belong, his attention span to non-preferred activities is increasing, he is saying dada and daddy when he sees Juan, he is reciprocating in interactions with us, he is showing us that he understands people as a tool to help him achieve his goals (putting the playdoh container in my hand when he wants it open, guiding me to the kitchen when he’s hungry, taking me to his room to sit by his crib when he’s tired).
We also recently had another phone consultation with Dr. Jerry Kartzinel earlier this week and we’re doing a couple of changes with supplements to see if we can spark language. We will follow up with him every two weeks until we’re satisfied with the progress.
Juan and I are in the process of becoming familiar with Dr. Alan Greenspan’s Floortime Therapy model to use at home as often as we can. We are navigating the parent videos, ordered the printed manual and have his book from which to take more notes. From what we’ve gathered, it seems like the best therapeutic approach to take as it aligns well with our value of play and affect.
Like I wrote to a friend on Facebook yesterday, I can accept any disappointment as the inevitable tango of life: two steps forward, one step back. Except, tango is not two steps forward and one step back. That would actually be the Texas Two-Step. I went to bed completely exhausted, but less angry and more calm. We are off to Fayetteville Thursday and Friday for College Orientation, and when we’re not orienting college Juan and I will be scrambling our brains for next-step solutions regarding Jacob’s treatment plan. As I sat in the midst of really tough emotions yesterday, I reminded myself that all emotions are temporary. I was certain that the fog of inadequacy would be lifted and I’d continue to operate from the level of hope and enthusiasm that makes me believe that one day, everything will be ok.
Signed with Love, Kat.