You Know Him Best
Taking a child to the hospital can be a little nerve wracking. Taking a special needs child with medical complications during life with COVID to the hospital…well, the frustration level is a wee bit higher. Our hands are tied this time as we wait for medical care to catch to the massive delays caused by restrictions put in place last year. I know it should all work out, but I’m going to reread this old story again before I take Ronan to his next procedure, which is scheduled next month.
I’ll need the motivation.
That time, from start to finish, everything turned out well. This time, it’s a new team of providers working with us. They know where I stand on certain medical topics. They know that I trust them and respect them. Most importantly, they know that beyond a shadow of a doubt, that yes, I do know my son best.
Ronan has a procedure coming up this week. He has another one scheduled in two weeks, too. I'm getting lots of phone calls about those appointments as they get closer. The nurse, the doctor, another doctor, a patient advocate, and now another nurse - quite a few people, including me, are checking and double checking on things. That involves making sure that all of the paperwork is done, that all of the information is current, and that all of us are on the same page.
I've experienced being on the same page with other providers. It's a good feeling and actually quite comforting to know that someone else understands just how complicated Ronan's case is. I'm grateful that they quickly include me in discussions and in pre-op work ups. In the past, providers have told me that they appreciate what I have to offer. They want to hear my thoughts, and they make sure to include me and update me as much as possible. That makes appointments run smoother, and it makes treatment plans more successful.
Not all of our experiences with medical providers have been smooth and successful though. I've stayed polite while listening to a doctor belittle me. While waiting for him to be done with a rant, I collected my thoughts as well as my things knowing that that appointment would be the last one. Another time, after learning that a provider was less than qualified to treat Ronan, I confidently yet sternly told that person they were never to touch my child again. Their negative attitude, as well as their inexperience, were no match for Ronan.
Those encounters are never ever easy, but they have happened.
Yesterday, in preparation for one of Ronan's procedures, I got another phone call. It was from a nurse. She called to get some medical history and to tell me what to expect when Ronan goes under this week.
Once we said hello, the nurse began asking questions right away. Then she went over important information: confirmation of the procedure date and time, directions to the facility, and a list of the paperwork that I needed to bring. After she gave me a list of things to bring and what to expect, it was my turn to talk.
Nurse: Do you have any questions?
Me: I do. You answered a few of them already with the information you just
shared, so thank you. I appreciate how thorough you were.
Nurse: Thank you.
Me: One of Ronan's other doctors ordered some labs. Can we bring the lab slip with
us when Ronan goes under?
Nurse: Smart idea.
Me: Thanks. We try to do those when Ronan is under. He gets so nervous for
blood draws. If we can do the labs during the procedure, that'll be amazing.
Nurse: Yes, we can do that. Whatever we can do to help.
Me: Thanks, it's hard sometimes, but with help from the right people, together,
we can get a lot done for Ronan.
Nurse: We know it can be hard for some kids...and their parents. But
you know him best. If blood draws are hard while he's awake, let's plan
on the blood draw as soon as he's asleep.
Me: Ronan has sensory issues, he's non-verbal, and will be very nervous. Medical facilities
make him nervous. Can I bring his favorite blankie and his iPad for when he wakes
up from the procedure?
Nurse: Of course! You know him best, so bring whatever he needs to feel comfortable...
You know him best.
It was a quick conversation, but the nurse said that to me twice in that short conversation. I was elated.
When I find myself talking to some medical providers, I sometimes never know what I'll say. I know what I want to tell them, but I tend to wait to say anything. I wait to hear their thoughts, their statements, and their requests. I listen quietly. I listen intently. I take notes. I feel them out. If I'm face-to-face, I watch their facial expressions. I watch their body language, I catch their tone, and I size them up.
En garde! On my feet, ready to fight. That's not how I want to feel when talking about Ronan's medical needs, but sometimes, being ready to fight is the only way things have gotten done. I wish it didn't have to be that way. But since we've been ignored and belittled by some of Ronan's past providers, being ready to battle is an automatic response.
Thankfully I didn't have to put my dukes up during yesterday's phone call. That call was a reminder that good people are out there. They're ready help Ronan. They're happy to hear what I have to offer. They understand that Ronan's Mom is just as part of the team as they are. They agree that they, too, want the best for Ronan. They promise that they will do whatever they can for him no matter what.
The two upcoming procedures are making me nervous, but I'm finding that if I have any questions, a helpful person has recently been just a phone call away. To those people who are helping, I see you. I hear you. I appreciate you. I thank you.
Cathy Jameson is a Contributing Editor for Age of Autism.
Part of why this works (when it does) is that you have always been on your son's side. Never on the side of "make the problem go away" or of "don't rock the boat."
Two years ago (feels like a lifetime), my neighbor told me about an incident at her son's school. He has autism and was in elementary school at the time. He had been goofing around with some craft supplies, and a teacher accused him of making "terroristic threats." The teacher insisted on having the conversation with Mom in front of the son, and Mom unapologetically backed her son. The teacher asked her not to challenge her in front of her son, and Mom replied, "He needs to know that I'm on his side."
He's in a different school now and was doing very well before the shutdown in March. It has been hard for him to get all the services he needs. But one thing I am sure he knows is that his mom would never take the side that wasn't his.
I don't think it's much different in medicine. A lazy or ignorant practitioner may try to make moms feel as if their children's food sensitivities, drug allergies, etc., are a shameful problem--something to be brushed aside or ignored--but a good mom does what you've been doing for as long as you've been a mom, Cathy: She takes her child's side.
Posted by: TOB | January 11, 2021 at 06:43 AM
Very good article , NHS used to have a mantra based on" No Decision about me without me "
See Helen Sanderson Associates.co .uk
Person - Centred Thinking Tools - Helen Sanderson Associates
 Gather your information
 Do an assessment
 make a plan of action
 implement the plan of action
[ 4] Review /progress or note any problems, issues , difficulties .
Not a hard process?
just the same as making a pot of home made chicken soup etc !
when the process breaks down ,it really breaks down !
Alliance For Natural Health; Home
Video - In a Mother's words ; how the untouchable cancer system fails our children
The Truth Behind The Neon Roberts Story .
Bruce Springsteen The Power of Prayer - Official Video You Tube
Posted by: Morag | January 11, 2021 at 04:16 AM
had a surgeon lined up due to 3 meds at a time not working out
thankfully got to see an epileptic surgeon who said he never should have been put on all these drugs...MTHFR mutation
Son got better due to less intervention!
Posted by: Patrick | January 10, 2021 at 11:47 PM
God Bless you Cathy for being such a wonderful mom to Ronan. He is very lucky to have the greatest mom in the world always there for him and take care of all his enormous needs. Heaven holds a special place for moms like you and I wish you the very best of luck during his procedures. Ronan is a very special and brave person. All the best!
Posted by: Gayle | January 10, 2021 at 08:32 PM
So happy to know Ronan and his family will be well taken care of. Great to know he will be in good hands. Mother knows best! How true indeed. Great article as always. Blessings to all who come onto the Age of Autism website. Where freedom of speech and humanity(love) is alive and well.
Posted by: Gerardo Martinez | January 10, 2021 at 08:32 PM
All I can think while reading this is how blessed Ronan is to have you as his mommy, Cathy. The word hero gets thrown around too easily sometimes, but in this case, it’s perfect. There’s a place reserved for you in heaven. God bless and keep you safe.
Posted by: Marie Simonton | January 10, 2021 at 05:47 PM
A couple of weeks ago my son was seen by a specialist (for fainting the second time in eight months). I have noticed in the last few years that all medical staff are familiar with visits from ASD patients now. The specialist asked me for advice regarding toileting because his nephew, in his teens, is in diapers. We must be close to the tipping point, where doctors will refuse to participate in the charade that vaccines are safe and effective and will start trying to rectify the damage.
Move forward with confidence Cat. Our children are enlightening them.
Posted by: Beleaguered Autism Mom | January 10, 2021 at 12:52 PM
I think I speak for many when I say thank you, Tom, for understanding and for assisting families like mine. Blessings to you and your family. Cathy
Posted by: Cat Jameson | January 10, 2021 at 11:07 AM
Unfortunately this feeling is all too common amongst our community. Whenever I have a patient with special needs, one of the first things I do while conducting my assessment is to ask the parent what is the best approach, while also telling them I have two of my own at home. That almost always results in a visible decrease in stress levels. It's the little things...
Posted by: Tom | January 10, 2021 at 09:04 AM