September 2, 2015
by marfmom


What I Look For in a Doctor

I’ll admit: I’m picky about doctors. I want someone knowledgeable (or willing to get knowledgeable), friendly, and willing to explain their line of reasoning to me. I’m particularly picky about Marfan doctors. It’s a combo of my being very knowledgeable about Marfan, and that it can be a life-or-death issue.

A week and a half ago we saw the orthopedist again. The visit didn’t go well. Sure, J’s scoliosis was stable, which was great. But, the doctor showed that he doesn’t know Marfan as well as I thought he did, in part when he asked why we thought J has Marfan. (And let me clarify. This wasn’t a question out of curiosity, but very much a “I don’t believe he has it” sort of thing.) When I explained that I do, the doctor didn’t believe me and demanded that I show him my hands, before saying “well, I guess they are kind of long.” Never mind that J meets clinical criteria, has a positive genetic test, and we both have the “look.” This sort of behavior demeaning and offensive. It’s one thing to try to collect patient history. It’s another to treat us like we don’t know anything and to gawk at our bodies.

Furthermore, J is having ankle issues. Whether or not to use AFOs has been a conversation that we’ve had with his various physical therapists and orthopedic surgeons since he was 10 months old. He’s in DAFOs right now, but they’re not working so well anymore. He’s falling quite a bit. In fact, he broke his arm while we were at the Marfan conference (blog post about the conference coming soon) and his legs are full of scars and scabs. His amazing physical therapist and I want to try a hinged AFO, so I asked the ortho for a prescription. He refused and wouldn’t offer any other ideas.

On Friday, we saw a different orthopedist to take off J’s cast. Our pediatrician recommended this doctor. I expressed concern about asking him for a Rx, because orthopedists and physical therapists are firmly at odds on the use of AFOs, as I had just seen yet again. I wasn’t sure we’d get a fair shake, but the pediatrician assured me that we would.

So, when J got his cast off Friday, I brought up AFOs. The doctor wasn’t interested in doing an exam, or in J’s history. Instead, he made a passionate argument as to why AFOs are never appropriate (including with some incorrect info about Marfan). But, he agreed to talk on the phone with J’s physical therapist.

I filled her in on the appointment, and waited to hear back. I worried that it was going to look to his pediatrician like I was chasing a treatment/doctor shopping for the answer I want. Anyone else ever feel that way?

But then I heard back. And what I heard back changed how I will address this with our pediatrician. J’s physical therapist told me that the doctor declared that J’s ankles are a “life sucks” situation with no way to help. She told me he said that if a solution existed, “orthopedists would have found it already.”

What if Dr. Daniel Hale Williams had said “if a way to operate on the heart existed, a surgeon would have thought of it already?

What if Drs. Ross or David had said “If a solution to a mechanical valve existed, cardiac surgeons would have discovered it already?

What if Dr. Hal Dietz had said “If a solution to slowing aortic enlargement for people who can’t take beta blockers existed, researchers would have found it already?

But they didn’t, and Dr. Williams performed the first open heart surgery, Drs. Ross and David created aortic valve sparing procedures, and Dr. Dietz discovered losartan as a potential treatment for aortic enlargement (which a team of researchers later showed to be viable).

If doctors didn’t look beyond the present to see the possible, people with Marfan syndrome would still be looking at a life expectancy of around 40 years old. Instead, we have an average life expectancy. So many “impossibles” are now standard care, and I know we’re on the precipice of more discoveries. My son does not have time to waste on doctors who see limits.

There may not be an easy answer now, but that’s not a reason to refuse to try something. That’s not a reason to decide to give up completely.

So no, I’m not looking for doctors to be a “yes man.” I’m looking for doctors to be believers: believers in themselves, believers in my son, and believers in what can be accomplished when we work together and dream a little.


August 31, 2015
by marfmom


Review of Uniquely Human: A Different Way of Seeing Autism

Today I’m reviewing the book Uniquely Human: A Different Way of Seeing Autism, by Barry M. Prizant, PhD, with Tom Fields-Meyer. Full discloser: I was given a copy of this book to review, but not compensated in any other way and all thoughts on this book are my own.

Uniquely Human

This is a book that appears geared towards parents of autistic children, as well as professionals who work with the autistic population (particularly school professionals). Dr. Prizant has worked with autistics for four decades in a variety of settings, and has done scholarly research as well.

The premise of Uniquely Human is that society should not be viewing autism through a deficit lens, where the goal is for the autistic person to achieve “normalcy.” Furthermore, rather than chalking up behaviors to “just being autistic,” neurotypical people (i.e. – people who aren’t autistic) should be working to uncover the communication that is happening through those behaviors, and adjusting the way that THEY communicate and respond to fit the autistic person’s needs.

I have to start by saying that there were two things said at the beginning of the book that I found frustrating and troubling.

First, he starts off the book explaining that he is going to use person-first terminology (i.e. – “a person with autism” vs identity-first language, which would be “an autistic person”), although “I am…aware that others, in particular some adults with autism, prefer the label “autistic,” feeling that autism is indeed a defining characteristic and is essential to their identity and that person-first language implies that autism is inherently bad….While I fully understand and respect that opinion, I have chosen otherwise for this book.” Why? The majority of the autism community (meaning, autistics themselves) prefer to be called autistic. I am a firm believer in a given community being able to define the language used to describe them. Otherwise, that really just feels paternalistic. Why should someone who has no idea what it’s like to be me, determine how I refer to myself? The idea that a person (in this case, Dr. Prizant) would understand the reasons behind the language-choice by the autism community and still refuse to use it seems incredibly pretentious.

Second, Dr. Prizant makes the comment that “…my most valuable lessons about autism have come not from lectures or journals. They have come from children, their parents, and a handful of extremely articulate adults with the rare ability to explain their own experience of having autism.” Children with autism do not magically stop being able to express themselves when they reach adulthood. It is not rare to find autistic adults who are able to share their experiences. They may not have fluent verbal language, but through assistive technology or blogs, or just by us being a patient listener, they can. I understand that forty years ago, early in the author’s career, this was not a commonly held thought. In addition, the technology that is so helpful for many on the spectrum today was not available. But, things are different now, and as parents of autistic children we should definitely seek to learn from autistic adults.

That said, chapter 9 is called The Real Experts and devoted to lessons Dr. Prizant has learned from his adult autistic friends (I’ve written more about this chapter later in the review). I hope this means that his use of the word “rare” in the introduction was a poor word choice, and not what he actually feels. He also includes a list of resources by autistic people at the end of his book.

Beyond that, I found myself agreeing with much of the rest of the book. It’s a book that I wish I had read when the Menininho was first diagnosed. I’ve had an evolution of thought over the past 5 years (thankfully), but I wish I could go back and change how I felt about stimming, scripting, etc.

Dr. Prizant splits his book into two parts: Understanding Autism and Living With Autism. In the first section, he discusses things that should be common sense, but for whatever reason many people lose common sense when it comes to autism. For example, the very first section is about asking why a given behavior is occurring. He is full of examples of people who either labeled an autistic’s behavior as “noncompliant” or otherwise set about trying to change it, without seeking first to see why the autistic person was engaging in that behavior.

One section of the first part of the book is about how we as caregivers can build trusting relationships with the autistics in our care. Dr. Prizant’s suggestions are all common sense but, I think, easily forgotten by parents of autistic children. These include acknowledging attempts to communicate, practice shared control to build self-determination, acknowledging an individual’s emotional state, being dependable, reliable, and clear, and celebrating successes.

In another section, Dr. Prizant discusses the importance of community. So true! The only thing I would change here is that while he talks about the importance of community to families, it would be good to mention the importance of community to autistics. If you’re a neurotypical parent, you’ll learn quite a bit by making friends with autistic adults, and your children will benefit from being around other people who are like them.

This book is a series of examples from the 40 years that Dr. Prizant has been in the field. Sometimes it might seem as though the solutions were found very quickly, but I think the important takeaway here is that there is always an answer. As some therapists told us, all behavior is communication. It is up to the neurotypicals to do the work to find out what the autistic person is saying, whether that be through scripting, body language, etc.

As mentioned above, chapter 9 is full of insights from autistic adults about what their lives are like. I’m very glad that Dr. Prizant included this. The importance of hearing the perspectives of the autistic community can not be underestimated. He shares experiences from three friends that he’s made over the years, all three of whom work in the field of educating others about autism and improving services for the autistic community.

I like that the author doesn’t focus on the idea of “recovery,” which he says is rare to impossible. He encourages parents to focus on their child, getting to know them, and helping them overcome challenges that they may have. As one parent said, “I keep trying and trying to fix Pablo, and what I’ve learned is that he’s whole and he’s happy.” Our kids are whole. As with parenting any child, it’s important that we do what we can to help them be the most successful versions of themselves. How that process occurs and what defines success may look different for our autistic children, and that is ok.

Overall, I would recommend this book, particularly to parents of newly diagnosed children, and to professionals who work with autistic people. Menininho had some therapists who echoed many of Dr. Prizant’s ideas, but he had some who really missed the mark too. So much of the media presents a scary view of autism, and this book resonates with the view that I have now. Refusal to use autistic-preferred terminology aside, I believe Uniquely Human: A Different Way of Seeing Autism will help parents and professionals direct therapies and daily interactions in a more autistic person centered way.

For more information on Dr. Prizant, or to purchase his book:
Publisher’s page for the book
Dr. Prizant’s Facebook page
Dr. Prizant’s website

Blogs by Autistic People: (by no means an exhaustive list)
Autism Women’s Network
Autistic Hoya
Carly’s Voice Facebook page (note: this page isn’t currently active)
John Elder Robinson
Just Stimming
The Thinking Person’s Guide to Autism (note: not all posts are written by autistic people)
Tiny Grace Notes (Ask an Autistic)

August 13, 2015
by marfmom


2 Years, 2 Months, 1 Week, 4 Days

That’s how long it took from when we were homestudy approved until we got The Call about our daughter. Yes! For those who don’t know, we have a beautiful little baby girl, Miss R! Her surprise arrival and some issues getting into my blog account from my new computer are responsible for a delay in blogging.

I’m excited to share our side of Miss R’s arrival story with you today, while asking you to keep in mind that I won’t be sharing everything out of respect for her birth family and her own privacy. Her Story and Our Story will always intersect (much as any of our biological children’s stories will) and it’s tricky to tease that all apart. I think it’s even more important in adoption to be careful to let the child have ownership of his or her own story, and I hope that I have more success than error with this as time goes on.

The Menininho, J, and I spent spring break in North Carolina, visiting my mother and sister. When we made it through security at the airport to come home, an email notification popped up on my phone. It was a message from a social worker at our agency, asking if we wanted to be considered for a potential situation. After a brief phone call with Mark, we decided that yes, we did, and of course I spent the plane ride home (when I wasn’t helping the boys) daydreaming that perhaps this would be our baby.

Spoiler alert: It wasn’t. A little less than 48 hours later (a weekday in April) I received another email, letting me know that there were other plans for the baby. I told myself it was just as well. I fed the kids dinner. I got M ready for t-ball practice. About 5:15 that evening I was about to load the boys into Mark’s car for t-ball and was packing up my van to head to a meeting when Mark ran back into the house to check something. A moment later though he ran back outside and handed me his phone as he called over his shoulder “it’s the adoption agency!”

The social worker on the line suggested I put the phone on speaker, but I told her no, Mark was busy. Well and honestly, I can’t figure out how to do anything on Mark’s phone, let alone put it on speakerphone. She asked me if I’d been told about a baby in _____ city. I felt irritated at this point. I told her yes, I’d already been told that that baby wasn’t going to be placed with us a few hours before, so why was she calling me?

“Oh. Um, well, I don’t know anything about that baby. I’m calling about a baby who was born yesterday.” the social worker said.

Whoops, my bad, jumping to conclusions!

She then told me about the little girl who would be Miss R.

“Well, what do you think?”

“What do you mean what do I think?” I asked a little sharply. “Are you saying her mom picked us? Are you asking to show our profile? What are you talking about?” I mean really I should have figured this all out from the moment the social worker suggested speakerphone but I think after all the “No’s” and the match that didn’t work out, my brain just couldn’t go there. I needed it spelled out for me and this social worker was taking her own sweet time!

“I’m telling you you have a daughter!”

Well at that point I just flipped out. I couldn’t form a coherent thought. It was something like “Mark! Mark! There’s a baby! A baby girl! A baby girl for us! We have a baby girl! Now! She’s here NOW!”

The social worker wanted us to wait till the next day to come to the hospital. I told her no, we’d been waiting too long and to give me an hour to pack and find somewhere to take our boys. Tell the hospital we are coming and if they won’t let me in well I’ll just be waiting outside the door first thing in the morning, but I am coming to my daughter NOW.

Mark brought the boys inside while I ran upstairs to throw dirty clothes in a suitcase (hadn’t done laundry from spring break yet) and call our parents. Eventually Mark and I realized we hadn’t actually told the boys what was going on. I went downstairs to find them just standing patiently in the living room.

“Hey guys, I have something to tell you.”

Menininho asked “Are you going to tell us that we have a baby sister?”

“Yes, yes it looks like you have a baby sister and Daddy and I are going to meet her tonight!”

The boys just started screaming and running in circles cheering and expressing gratitude.

My inlaws took the boys for the night, and Mark and I started the long drive. Let me tell you: the drive to go meet the baby that is hopefully yours, who you had no idea about 2.5 hours ago, is a very weird one. I’d never been so excited! It was amazing calling our siblings to tell them the news. It was also the LONGEST DRIVE IN THE HISTORY OF THE WORLD.

My face, the entire drive to the hospital.

My face, the entire drive to the hospital.

We got to the hospital about 11 pm. Went through the ER as instructed, found the security desk, gave them our info, and waited to be taken to the NICU (the hospital didn’t have a nursery). Security had no record of any such baby. After a few moments of panic, Mark called our social worker who informed us we were at the wrong hospital. So, correction to what I said above: the 5 minute drive from the wrong hospital to the right hospital was the LONGEST DRIVE IN THE HISTORY OF THE WORLD.

The nurses were waiting for us (though they had thought we were coming from a much closer part of the state and were therefore confused why we didn’t arrive until 11:30 pm). When I saw Miss R, I just knew. I knew that she was who we had been waiting for.
I was knocked over by not only the love I had for her, but the love I had for her birth family.

Mark and I spent a couple of hours with R, then tried to sleep at a hotel till we could come back the next morning. Mark had to drive back home after we met with the social worker that morning in order to be with our boys. All in all, R and I had 8 days more before we could go home. One of my very best friends had recently taken a job at the same hospital where Miss R was born and was kind enough to let me crash on her couch during that time and take me to and from the hospital. (We had too much fun surfing online one night, which ended up in the purchase of Nathan Fillion earrings.)

I treasure the time that I had just Miss R and me, bonding together in the hospital. And seeing the looks on her brothers’ faces when they met her for the first time….there aren’t words.

R wasn't too happy about being woken from a nap to meet everyone.

R wasn’t too happy about being woken from a nap to meet everyone.

Now, 4 months later, the boys are still just as attentive and loving and excited to have a sister. We are all so, so in love.
First family photo

First family photo