We lost one of our therapy providers, so I got to work searching for a replacement. I asked local moms who they liked in our area and requested info from Ronan’s doctor for advice. When one group kept getting recommended over and over again I took that as a good thing and stopped by their clinic. I easily could have picked up the phone to ask my questions, but I like to see the environment where my child will spend the better portion of 2 hours of his already full week.
I was greeted warmly and shared my questions, concerns and thoughts about Ronan’s current needs with the young receptionist. I was quite pleased with the information I received after she answered my many questions. I felt confident that the referrals my friends and doctor gave would be a good fit for Ronan, and a date was picked a date for the initial evaluation appointment. I left the office with a stack of paperwork to fill out and went home to find all the documentation needed for that first appointment.
It was a few more days before I sat down with the forms from the receptionist. The top piece of paper had a list of items I needed to bring with me and Ronan went he went for his evaluation. I got started on collecting those items and then settled down to fill out the several pages of other forms. All looked typical of what other therapy providers would request: name, age, birth date, current diagnosis, list medications, any other treatments or therapies, a short prenatal and birth history section and finally a section on skills accomplished and skills being worked on. But, the last question on page 2 of the intake form had me raise my eyebrow. W-h-a-t? What is this? Really? Can they ask that? I decided to leave the question blank until the day of the appointment.
Ronan and I arrived at the clinic ten minutes early. I handed over some of the paperwork but waited to ask her my question. As she was organizing Ronan’s chart I took a second to flip the intake form to page 2 and to that section that threw me off. As we were passing papers and insurance cards back and forth I said, “Hey, I have a quick question. This section here (showing her the form), can you tell me why you want this info? It’s about vaccines and vaccine injury. I’ve never seen a question like that in any of our other therapy clinics.”
The receptionist looked up to answer, but a therapist was also sitting behind the counter and offered an answer, “We ask because we’re curious. It’s something we noticed happening more often so we keep track of that info.”
I looked behind me. Yep, she was talking to me. About vaccines. And vaccine injury. And that it happens! And that they know about it! I looked at the papers in my hand again. My eyes focused on that last question: “Has your child had a negative reaction to any vaccinations? If yes, please describe.” I scribbled down my answer and handed the now-completed form to the receptionist saying, “Thank you, thank you for noticing what is going on. Thank you for knowing kids like mine are out there. I am one of those parents who didn’t notice soon enough, and Ronan is ‘one of those’ kids. I’m absolutely stunned, but thankful, that you know what’s going on.”
The therapist went on, “We [she and the other therapists] have our own kids. Our kids are unvaccinated. We see what it’s done when kids like yours come in for therapy. It helps us as therapists to know that your child’s been affected, but it also helps us as parents.”
Wow. Was I dreaming?
Nope. She continued.
“We also like to know about vaccine reaction in case there’s an outbreak, you know like chicken pox or something that lots of kids might catch. It helps us prepare to help our own children and it lets you know that sicknesses are going around. We know it could be worse on kids with vaccine injury.”
Holy smokes! This gal knew vaccine injury!
It was time for Ronan to go back for his evaluation. I sat in the waiting room and looked around. No hidden cameras or someone peeking out from a trash can filming Candid Camera. No Ashton Kutcher jumping out from the behind the receptionist area saying that I’d been Punk’d—that conversation was the real deal. I leaned back in the chair and closed my eyes. I didn’t know if I was going to laugh, cry or jump up and down in excitement: other people know! They know what happened to my kid. They know it’s real! Other people know it could happen to theirs. They don’t want to take that chance. These people are being pro-active not just for themselves but are also looking out to help moms like me. Wow!
I was called back for the last part of the eval. The therapist and an assistant had questions for me. They had the intake forms and went over some of Ronan’s therapy history and also wanted to talk about therapy goals. I gave a quick recap supplying some important history and diagnoses Ronan has had. I offered a piece of the biomed support we’ve done just to see their reaction, and then I got ready to share those goals I have for Ronan. The therapists had been eagerly listening to the who, what and why that makes Ronan who he is. I shared that my biggest goal includes Ronan’s communication needs. His limited speech has always been a great worry. Knowing his receptive language skills are superior to his expressive ability I want to continue to draw on that skill. I’d like to continue to teach him as much as he can tolerate and also help him experience as much of the world that we can with him. I have big dreams for that kid and want to see him successful not just at home or school or therapy, but also in our community when he grows up. My reality and his abilities aren’t ready for grown up yet because Ronan’s limitations still hamper simple, every day routines, but I still want the world for him. If we can break through those limitations imagine what he can do when he grows up! Oh, yeah, my other big hope is that Ronan will have better writing skills. That way he will be able to endorse his first paycheck when he gets his first job in the real world.
It seemed like a tall order, but the therapist nodded her head, interjecting a few nods of her head and the other therapist added a couple of quiet, “Yes, yes…” responses as she took notes on everything I said. Instead of feeling that ever-widening gap widen like it sometimes does with other providers, it felt like a bridge just for Ronan was about to be constructed. I shared as much as I thought would be helpful for them to know and then let the two therapists have the floor. Tell me everything, because I’m all ears.
They have a large base of clients of all ages and developments. They were experienced with several disabilities and disorders so it wouldn’t be a problem getting Ronan onto their schedule. They could definitely offer the support for Ronan through their program and expertise. I asked about their experience with behaviors as some of Ronan’s have begun to impede his learning and being able to follow through with tasks. We talked about behavior interventions and that they were also well aware that not every day is a good day, and that not every good day will stay a good day.
It turns out that the therapists were not only specialists in their field, but because of the population of clients they have, they seek not just their own professional development training, but look at other topics that might be helpful for them and for the children they service. After attending what sounded like a mini-DAN! conference a few years ago, the therapists were blown away with the information they’d heard. They came back to the families in their clinic and hosted their own workshop in order to share everything they had just learned. They said it was such important information they just had to tell everyone what they’d learned. Their discussions included dietary changes, the benefits of the gluten-free diet, the overuse of antibiotics and how detrimental it can be for some kids, how environmental factors can be related to learning delays and more. Since they were the best gig in town they’d already established a good deal of networking with different providers and shared clients with several chiropractic doctors, holistic centers and some places that promote natural remedies. I could not believe my ears. They were sincere, knowledgeable and professional. This was turning into one dreamy evaluation and the best I’ve ever had for Ronan. With the evaluation about to wrap up we agreed to get Ronan’s first appointment scheduled as soon as our calendars matched up.
It isn’t everyday you find someone qualified like these people. Plus, they were full of energy and young. Gosh, they were so young! I honestly thought one of the therapists was too young to know as much as she did, especially for not having had an affected child! But, she was in fact more—she was an informed parent. And she picked up on an important message: she could take control of her child’s health. How empowering to know how to keep a child healthy long before many of us parents knew that our own children’s health was taken away.
I am grateful beyond words that this therapy group was willing to share as much as they did. They were professionally qualified for what I needed for Ronan, and they had the added benefit of being a parent able to relate with me. My dreary outlook of ‘yet another therapy’ appointment for Ronan was turned around knowing that their services include working compassionately with many, many children like Ronan. They easily could have ignored what they saw and heard about vaccine injuries. Clearly they didn’t. My last thought I had as I left the clinic with Ronan hand in hand with mine was how lucky these therapists’ children are. They are growing up healthy alongside Ronan’s generation of sick children. It’s true we parents need support for our children now, but our children will one day live, work and rely on these healthy, typical kids in adulthood. These typical kids are being given the chance to really grow up, to not be dependent adults who can’t speak or who are still wearing diapers. My wish for them is that they continue to be given that chance to live life, to really live it like it was meant to be.
Cathy Jameson is a Contributing Editor for Age of Autism.