I wrote a blog post a few days ago when I was frustrated and saddened and I stopped just before I finished the closing paragraph when Paul told me he'd watch the kids so that I could go to the gym. My Christmas present this year is a $10 a month gym membership, which I 've been putting to good use this past week and after about twenty minutes of cardio I was glad that I hadn't published the the rambling rant that I'd written.
Still I've sat down to write a post every night since I wrote that one last week and my fingers have sat frozen on the keys.
I'm horrible at blogging when I have something on my mind that I'm avoiding writing about, that I still need to work through and apparently just writing that draft and putting it away isn't working. And maybe now with a few days between come and gone, I've hopefully cooled down enough to really process why it is that the entire situation bothered me so much. Logically I know it wasn't that bad... and yet I found myself sniffling and holding back tears as I stumbled through the rest of Sadie and Mae's doctors appointment.
If you're ready for a rambling post in which I work through all of these things that are apparently making it impossible for me to write, keep reading.
A couple of months ago Sadie and Mae both had speech evaluations in an office across the street from the hospital where Patch and James were born. It's a familiar building, with seven stories of doctors offices, and these days we're there at least twice a week for OT, and often we're back eve more often, since my OB and Patch and James' pediatricians have offices there as well.
The speech therapist asked me to call the girls' pediatricians office to make appointments for hearing tests before we saw her again and a couple of weeks after James was born I tried to do just that. I called and said that I needed to make an appointment for a hearing test and explained that my four year old who is a patient there is autistic and asked if they would need to refer us out to a specialist for her test.
Of course I wouldn't need to take her somewhere else, I was told. But they couldn't make the appointment that day, because we already had conflicting doctors' appointments scheduled for 100% of the times they had available, and so I was told to call back the next week and in the rush of the week that followed I never found the time until two weeks ago when I finally had a moment to myself and I actually remembered to make the call. The conversation that followed went something like this:
Me: "Hi, I'd like to make an appointment for a hearing test for my daughters who are both patients at your office."
Receptionist (after collecting their information and bringing up their files): "Why do they need hearing tests?"
Me: "They both had speech evals at (the name of the clinic) and the speech therapist requested they have hearing tests done at their own doctors' office to rule out a hearing problem."
R: "It says here that they both had physicals back during the summer and that the physicals were fine."
R: "So they didn't notice a hearing problem then. Has this problem been noticed by their school? This is usually done at school."
Me: "Well one of the girls is four and is in therapy all morning and doesn't go to school and the other is homeschooled."
R: "So is there a reason for this test?"
Me: "The reason for the test is that the speech therapist at ____________ requested it be done and told me to call their doctor's office."
R: "But is there a reason?"
Me: "The reason is that they both have speech issues that caused the speech therapist to ask that I get them tested to eliminate hearing problems as a cause."
Finally, after going round and round, she made the appointment for me.
On Friday Sadie and I rushed home from Occupational Therapy and Mae ended ABA early so that we could hurry across town to their doctor's office.
Waiting in the waiting room at the office is always stressful and this time was no different. Mae did better than she has in the past. Having Sadie sitting next to her seemed to calm her considerably since she is usually incredibly stressed whenever she goes into this place where she knows they'll make her take off her shoes and where they'll weigh and measure her. This time she even stood on the scale and allowed herself to be weighed (without shoes!) after watching Sadie go first, which was the first time the process hadn't involved a complete meltdown.
But the waiting room is usually the worst part of our visit. It's the part that I dread. Between the stares and the disapproving sighs and occasional rude comments it's a half hour of my life I would gladly spend somewhere else.
Then it was time to go into the room to wait for the doctor. The nurse, who I've gotten to know fairly well over the past year, looked at our chart and said "Just so you know, there's no way we're going to be able to successfully test her." And I smiled tightly and said "I thought so. I asked when I called if it would be possible here and they said yes... So we'll get a referral to specialist?"
After that it was time to wait. And wait. It wasn't as long a wait as it has been the past. Then the doctor came in. If I'd known that we'd have an actual exam with the doctor, instead of just a hearing test, I would have requested our doctor, but I hadn't and so we were seeing a resident we'd never seen before. At least he knew what OT and ABA were (the doctor who did Maggie's physical didn't...).
He asked dozens and dozens of questions about the diagnosis'. Usually I can talk all day about the various tests, what we've done, what we've tried, who we've seen, but for some reason as I spoke with him I found myself feeling so, so tired. Maybe it was because he asked if Sadie'd been tested for autism. Yes, at two different offices. They concluded she has ADHD. Which offices? Which doctors?
He left to ask the attending doctor a question. The girls were doing remarkably well for having waited in a teeny tiny room for so long. We'd been there for over an hour and the hearing test still hadn't begun.
Mae started to giggle and I took a quick video:
I didn't feel like they were being very loud in that tiny room at the very back of the building, with the door closed. Maybe I was just too busy savoring the giggles and being thankful that they weren't screams. The day before we went to the doctor Mae began a vocal stim that lasted for about two hours. Every twenty seconds she would scream (with a smile), and that scream was so loud that the alarm system in our house would say "glass break" every single time that she did it. There was no stopping or distracting her. Usually stims don't bother me. I understand they're usefulness. But this one... oh this one hurt... So the level of noise in that room (demonstrated on the video) didn't strike me as out of control.
Until the knock on the door came and another woman in scrubs burst in with an angry look on her face and said "Excuse me but I am working next door and I am trying to make phone calls and it is very, very difficult with all the noise coming from this room."
Afterwards a million things would go through my head. I should have said something about how hard it is to keep kids quite when they're waiting for over an hour every time they come to the office. Instead I stuttered something about how I'd try, but... autism... and it's hard.
And then I was angry at myself for using autism as an excuse, angry at her for the instant look of pity that came to her eyes, for the change in tone, for the sudden sweetness and offering the kids books and puzzles and saying things about how hard it is for me.
And that's when the tears attacked me, out of nowhere and I sat there thinking about how I hadn't cried a tear when I'd heard that first mention of autism. hadn't cried when the pediatrician had told me she was 100% certain Mae was on the spectrum and yet there I was crying because some woman said my girls were giggling too loudly and she couldn't make a phone call. I held them back, just barely, knowing that if I blinked they would fall.
She left and it was just us again and Mae, who misses nothing, hid under a chair, making herself very small and quiet and Sadie, who will listen, sat perfectly still while we waited for the doctor.
He came back and examined both girls (and if she couldn't make a phone call with those little giggles I'm pretty sure it was impossible with the screaming that followed when he looked in Mae's ears) and then gave us a referral for another appointment in another office.
After that Sadie took and passed her test.
We left the office. But the day felt heavier. Everything I did felt heavier. When I got kicked in the face (completely accidentally in her excitement over something) putting Mae in her car seat the tears started to flow. And when I got home I snapped at Paul, not sure why I was even upset to begin with.
I stumbled through the hours until bedtime and then at Paul's suggestion, headed to the gym. Once I was moving the day seemed to move into perspective and the hugeness of that moment rapidly deflated until it no longer overwhelmed everything else. I could see again that even on a day that felt like that one did, our blessings far outweigh everything else.
Still it's lingered in my mind, that moment, and I have to admit it's because I'm baffled by the effect that it had on me than because of anything that actually happened. We've had many, many appointments in the past sixteen months since it was first suggested that Mae was on the spectrum and never have I felt anything more than a steady determination to help Mae achieve her potential.
And so I find myself stopping somewhat short of a conclusion that I'm searching for but not quite managing to find... having hopefully moved past my writer's block.