Monday, December 22, 2014

Ramblings on Hearing Tests and Tears

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."
Me: "Yes."
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:

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.

12 comments:

  1. You know...you have a lot going on in your life...and I know things are quite difficult. Plus, with having a newborn postpartum hormones can be crazy.

    I don't have all the same stuff going on, but sometimes just the "hardness" of everything we are going through overhwelms me and I have sorta mini-breakdown. Just a day of crying and needing to let off steam..and then it passes. It usually come around a transition time (like holidays) or when we get a piece of bad news or something like that. And, then it passes and I go back to being "normal"

    I think it's totally normal to have days of crying and feeling overhwlmed and sad, when life is hard.

    However, if it continues maybe talk to your dr. about postpartum depression which is super common..especially in the winter, I think.

    Hugs.

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  2. I think it's a realization that the world is set up to be quite a hostile place to the disabled in general, and it's even moreso for those with autism I think. But I don't think you used autism as an excuse. One of the best things a neurologist ever told me about Henry was to say and use the word autism and autistic whenever I could. It's not an excuse, it's a reason. Big difference. Now that Henry can communicate in the letter board, he's said that he wants me to tell others that he's autistic so they understand him better, and they do. One tip regarding appointments; always ask for an appointment at a time when there's no waiting, and be very upfront about why. Waiting in the waiting room is something that we just absolutely cannot do, and I make no apologies about it. It's been inconvenient many times but it just has to be. Asking Henry to wait longer that is like asking a wheelchair bound person to walk. It's *that* hard. Maybe it won't always be, but right now it is. Hugs and prayers and know that I get it!

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  3. Oh, Cammie...I am so sorry. There is absolutely no excuse for a medical professional to treat you that way. I have suffered from post partum depression and been appalled by some of the things nurses have said to me. Regardless of your needs - and ESPECIALLY if you have special needs - there is no reason for bad bedside manner. No reason. I am so sorry someone treated you that way. You are a wonderful mother, Cammie, and your daughters are absolutely beautiful!

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  4. You're stressed out, and the incident sounds like the proverbial straw that broke the camel's back. Thank God for your dear husband, who sees all you do and how much you do and how well you keep all the balls in the air, who knows how to give you time for yourself when it gets to be too much.

    You're remarkable, but you're only human, and you're entitled to reaching your limit and finally the frustration becoming too much. It happens to us all.

    If I were you, I would think the incident in the doctor's office was just a misunderstanding - someone who overreacted to your kids, who maybe was having a bad day herself and is now feeling like a huge heel. So, as your girls would sing, "Let it go!!!"

    God bless. ~ Bonnie

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  5. Feel free to edit or not post what say here. That person who took your call for the appointment is a big fat bitch who treated you with the utmost disrespect when she went round and round with her stupid questions. She is a BITCH and what she ought to have done, what a non-bitch would have done, is respect what you said to begin with and made the appointment with a pleasant and respectful attitude.

    Of course, the snide snarky nastiness in the waiting room was just more bitchyness. It tends to come out a LOT during December. Followed by finding out what you suspected which is you need a referral and the bitch who told you that you didn't was just too lazy to do her job right and schedule that so she lied and so you ended up with TWO appointments instead of one on an already hugely busy schedule.

    At least the nurse with the phone call issue had the brains to understand once you told her autism. But I find kindness can get me crying quicker than rudeness. Especially when I am tired.

    You have a LOT on your plate! Autism, allergies, special diets, endless rounds of therapy, and a new baby, this is a LOT and you rise to the challenge amazingly well. You really do, and even with the blessings, you are currently sleep deprived on a very busy schedule so when people make it harder it can be an overload.

    I'm glad your husband is wise and saw you needed to go work out. We all need breaks.

    Hint, I find noise reducing ear protection can make child noise, like screams, easier on your nerves. Self care is neither optional nor selfish.

    It is OK to have down days. Be gentle on yourself when they happen. Your children's progress shows you and your husband are on the right track parenting them. Gold star for you!



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  6. You have a lot going on, and it requires a lot of sacrifice on your part. A lot of physical demands, a lot of worries, a lot of missed sleep... I don't want to be presumptuous so forgive me if I am wrong, but it also seems like you don't have much in the way of real-life support (ie. Other moms you can blow off steam and socialize with, compare notes and discuss your "work" or nearby family to provide support and relief"). Do you ever get a mom's night out, a massage, or just meet for lunch with a friend, without kids? Cam, those things are not luxuries - they are part of a whole, healthy life. You are a person with needs, too. It is so good that you are going to the gym. That is awesome! We all need time alone in our lives to be healthy people. Please do not feel like you must martyr yourself on the altar of motherhood. You already don't get any break because the kids don't go to school. You need to build in a break somewhere else. Maybe that means you hire a sitter one afternoon a week so you can go sit under a tree and read. Whatever it means for you, dear - please care for yourself, too. Those babies need you to be healthy, and you need to set the example for good self-care. You are in the thick of it right now with four young kids very close in age. Adding special needs is a whole other kettle of fish. You are a wonderful mom! It won't always be this hard. Take care of yourself :)

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  7. For the last year of my grandmother's life, she was pretty sick. I think she had 8 or 9 hospitalizations. I was pregnant with my third (a hard pregnancy), and I was in charge of caring for her and handling all her medical stuff - which was complicated. She had a lot of serious issues going on. When she was not hospitalized, I found it was really hard to get a doctor to help me out when I knew there was a problem, but did not feel like we needed to go to the emergency room. On top of this, my grandma, who had practically raised me and was essentially my best friend, had mild dementia.

    One day she called me in the morning and said she had a bad cough and needed to be seen by a doctor. It was not a good day for me; it was last minutes and I had no child care. But I called her doctor and made the appointment and somehow I convinced my dad to watch the kids at his office while I took grandma. My dad does NOT watch kids. I was about 8 months pregnant and it took every ounce of energy to get to that doctor's appointment. I picked up my grandma, and all the way to the doctor's office, she intermittently hacked like she had pneumonia and told me she had "no idea why we were going to the doctor."

    When we got to the office, I had to trudge my grandma (in a walker) up a flight of stairs because the elevator was broken. This took and extra few minutes and we were about 10 minutes behind schedule, which always stresses me out. The girl working behind the desk said, "Your appointment was at 12:00, not 12:15. We can't see you. We go to lunch at 12:30." It was a Friday. I had to beg her to ask the doctor to please see my grandmother, because I had no other options for her aside from the ER. She finally came back with a huge attitude and said, "I guess we can just skip lunch for you." Ouch.

    I finally got my grandma back into the exam room where the doctor was flustered and rushed. I felt so, so self conscious about it because, you know, I didn't want them to miss lunch and they were obviously angry. The doctor asked my grandma, "So, what brings you here today?" And my grandma looked right at him and said, "I have no idea why she (me) made me come here. I'm just fine." And in that moment I completely lost it. Taking her to the doctor was the LAST thing I had wanted to do that day. She didn't understand that she was hurting me, but oh man, I felt so overwhelmed with emotion. I said, "Excuse me" and walked out and into the bathroom in the hall. I spent a few minutes in there collecting myself.

    I came back but stood outside the room in the hall. I just couldn't handle it. I just wanted to leave. The doctor asked me to come in, so I did, but I just wanted the visit over with. Through many surgeries and hospitalizations, I had NEVER cried. Never. My grandma was old, sick, and this is just how it was. But that day, something snapped. At the end of the appointment, the doctor saw how distressed I was and offered me some awkward encouragement, "Taking care of an elderly person is hard.... Hang in there... It's not forever. When is your baby due?" After I dropped my grandma off at home I was okay. I loved her so dearly, but she was a lot of work. That day was not a good day for us.

    Being responsible for another human, much less humans, is so, so hard. People don't realize how much they affect you when their little rudenesses and discourtesies arise. The person who says, "It's going to be a few minutes, is there anything I can get for you that would make this easier for the kids?" does not realize how helpful they are and the person who says, "Can you get the kids to quiet down?" doesn't realize how hurtful. The world needs more empathy and compassion.

    Jessica

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  8. If I were you (and obviously I’m not, so this isn’t advice but my reaction) I would have called the office after I got home and complained. That woman, whoever she is, had no business being so nasty. A simple, “Could you try to keep it down, please?” would have been a reasonable request. The reason you are upset for using autism as a response is because it does not take autism for a child to be loud. It doesn’t take much depending on the child. That easily, any day of the week could totally have been any 4 year old. It easily could have been me. When you keep kids waiting over an hour it is beyond easy for them to become bored, tired, hungry, thirsty, etc. As far as I’m concerned, if you are going to make kids wait long enough then you deserve the volume. There comes a point where I won’t try to hush them to help others get the point, particularly when it is an individual who works with kids and should know better. This is a pediatrician’s office… they should very well know better.

    Personally I’d also be upset because I don’t need people making things harder for me. Having the office say they could do it and then going through all that to have them say they couldn’t is a waste of everyone’s time, energy, money and patience. Some times in life are hard enough without people - either through greed or stupidity - making it harder unnecessarily.

    If you don’t want to call, consider writing them a letter about your disappointment in their apparent “yes” that became a “no” only after you had brought the kids, made them wait, and had an unexpected and unasked for exam by a doctor you didn’t know or request. Other than Sadie’s hearing test, was that just so they could bill the insurance company more than necessary? And that woman’s reaction to the noise, which really wasn’t bad at all in my opinion, doesn’t make you feel welcome or cared for by their office, much less your children.

    You seem to have some of the worst luck with medical personnel and I’m sorry it was such an awful visit. You are a great mom though and your kids are beautiful and awesome so try not to let other people’s stupidity and obnoxiousness get you down.

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  9. I meant to mention above something that works for us with screaming and other loud noises that Henry makes; if he has something making noise for him he doesn't seem to need to make the noise as a stim. So, I always bring an ipad or my phone with music on out and earbuds for him. Thks

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    1. I don't know what happened with this post but a bunch is cut off, sorry!

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  10. Jessica,
    I'm so glad you told that story about your grandma. First, because we all need to understand how hard it is and how heroic are the people who see after the elderly. And second, to give you a chance to tell your story, because I feel for you, and know those kinds of experiences as I take care of my own elderly mom and my elderly dad before he died. I've been at it for 15 years. But I've never had to do it 8 months pregnant! God bless you for being there for your grandma and doing it through all the flak. God will reward you!
    God bless. ~ Bonnie

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