doctors for all my friends

This is my temporary home
It’s not where I belong.
Windows and rooms that I’m passin’ through.
This is just a stop, on the way to where I’m going.
I’m not afraid because I know this is my
Temporary home

~ Carrie Underwood, Temporary Home

*

OK, so the other day I briefly alluded to the ‘pages-long e-mail’ that we had received from one of Brooke’s speech therapists. I didn’t really do it justice, nor explain its rather large part in sending me down the rabbit hole that morning.

I’m still not going to get into the specifics of it, but I will say this by way of background – I remain eternally grateful to the speech therapist for her incredibly keen insights. She gave us a window into our girl, and even more, perhaps a key to the inner vault. However, said insights we hard to swallow. Her revelations were big. Huge. Ginormous. Overwhelming.

Like Stork in Animal House, all I could think after reading it was, ‘What the hell we s’possed to do now, ya MO-ron?’ (Obviously not calling the speech therapist a moron, but I’m sure you already knew that.) I was lost.

I spun my wheels for a while, then decided to send the e-mail to Dr I Would Follow Him To The Ends Of The Earth and ask his advice. I sent the e-mail, called his office to schedule a ten minute phone call two days hence and then, finally, for the first time in three days, I exhaled.

Have I told you about Dr I Would Follow Him To The Ends Of The Earth? I have a secret, actually. Want to know what it is? Come a little closer and promise you won’t tell anyone.

I don’t actually call him Dr I Would Follow Him To The Ends Of The Earth. I mean, OK, that was obvious. But I mean that I don’t even call him Dr Anything. Cause he makes me call him by his first name. And well, he’s kinda dreamy so that’s sorta special.

For a while, it was really uncomfortable, because he kept insisting that I call him by his first name while still calling me Mrs __ until one day I finally snapped and said, “For heaven’s sake you’re not my pool boy; you’re an esteemed doctor who I would follow to the ends of the earth. I mean, heck that’s what I call you on my blog – Dr I Would Follow You To The Ends Of The Earth! So listen, I’ll call you by your first name if you call me Jess, but if I’m Mrs then you’re Dr.”

OK, maybe I didn’t say ALL of that, but why let the truth get in the way of a good story? Besides, the result is the same – we now we call each other by our first names, though he still slips occasionally and gets all pool boy on me.

But dreamy he is, so he really can call me whatever the hell he wants. He’s dreamy because he calls our kids “our kids” and because his affection and concern for my girl are unmistakable. He’s dreamy because he talks WITH parents, not AT us. Because he takes the time to go the extra step -EVERY SINGLE TIME. He’s dreamy because he values our children and believes in what they CAN do. And he’s dreamy because he makes appointments at 7:30 in the morning and 8:00 in the evening so that both Luau and I can be there.

But mostly, he’s dreamy because when he gets on the phone after reading a big, huge, ginormous, overwhelming e-mail from Brooke’s speech therapist, the very first thing that he says into the phone is, “Jess, this must have broken your heart.” And I get to say back, “You know what? The truth is that my girl struggles every day, so honestly, my heart was already broken. This overwhelmed me, Dreamy. And scared the crap out of me. And I simply don’t know what to do with all of this information.”

He gave me a place to start – a children’s psychologist who specializes in play therapy with ‘our kids.’ Someone who might be able to help put some of the pieces together without the words that aren’t there. Someone who has the tools to HELP.

Later that night, I spoke with my dad. I told him that I thought we were doing the right thing by proceeding down the path that Dreamy had suggested. That certainly, even if it weren’t the ultimate answer, there could be no harm trying.

As we talked some more, I told him what keeps me up at night – the fact that having a doctor who one would follow to the ends of the earth is so damn rare. The fact that it took me YEARS to find him, even in this great metropolis of famous hospitals and autism resources. That when I did find him, I could afford him. That so many others can’t. That so many others are stuck in that big, huge, ginormous, overwhelming, lost, what the hell are we supposed to do now, ya moron place. That I just couldn’t stomach the idea that care for our kids could be stratified by access, location, education, money, power, by ANYTHING. It can’t be OK.

Though I’m not ready to write about it yet, I will tell you that I’m working on finding ways to make things different. That I found inroads to the seats of power – or more accurately, they found me – and we are moving forward to find ways to help.

We all pass through big, huge, ginormous, overwhelming and lost on this journey. It’s par for the course and it is what it is – as long as it’s a temporary stop. It can’t –  it simply CAN’T be the place that we land.

If you have the means to help, please help. Give money, give time, talk. Talk to your friends, your neighbors, to those with the power to affect change. Because EVERY child who struggles with the challenges of autism deserves a doctor who his mama would follow to the ends of the earth.

**

Autism Votes

Doug Flutie Foundation

Holly Rod Foundation

To find an autism support network in your area, google “(your city) autism resources”

**

36 thoughts on “doctors for all my friends

  1. The sad truth is that while we haven’t quite had our own “Dreamy,” we’ve had some really great doctors who have given scads of specific advice/recommendations which then get completely dismissed by school. As you can imagine, that’s a huge factor in feeling stuck, lost. Impotent sometimes.

    • Oops, prematurely posted! Meant to add that I can’t wait to read more about what’s developing. You are a force to be reckoned with and I am so grateful you’re in my life. xo

  2. “Because EVERY child who struggles with the challenges of autism deserves a doctor who his mama would follow to the ends of the earth.”

    Yes, yes, yes.

    And this is why I am sitting in a Hampton Inn in Bismarck, ND.

  3. We have one of those docs, too – lots of laughs, phone calls, and one of the first lines in O’s ADOS report was that O was “quite adorable.” He walked into the room, watched O for about 2 mins, then put him in his computer chair and spun him until O focused on his face and smiled. I told S that he could tell us O was a pickle, and I’d listen, because he treated my kid like a kid.

    I will still fly to Ann Arbor from wherever I am to take O to this doc. Without even blinking at the cost (this from the cheapest woman alive).

  4. You are very lucky to have found him – while I was at the Children’s Hospital for a visit with an OT, I saw my son’s doctor in the hallway and said hello…. the very sad result was that I realized at that very minute, she had absolutely no idea who I was!! Now, I am sure she sees waaaaaay too many of “our” kids on a daily basis, but it really unnerved me that she didn’t seem to have any recollection of me at all…. even after my meltdown to tears during our evaluation and subsequent meetings… needless to say, my search for my Doctor Dreamy continues…. God Bless….

  5. so the question begs, does Dr I would follow to the ends of the earth read the blog and know that you call him Dreamy too? cause I would love to know what he thinks, or better yet feel knowing what you call him!
    okay enough about the sillyness! great that you have found someone to do play therapy, it is a valuable tool for the littles that can be extremely effective in getting to root causes for those who don’t have words. Many moons ago, way back before I was married and had children I did this in my practice, it was very gratifying!
    I will continue to hold good thoughts and say prayers that Brooke struggles become less and less. Much love DOAM, xo.

  6. Jess- Thank you for posting this. Before H was diagnosed I kept waiting for my “Autism Therapist” someone kind of like Mary Poppins to show up at my door with a big bag of magic tricks and load of understanding; someone to show me around the place, introduce me! Never happened. Doctors like yours are one in a million and you’re right, we need more like them 😉

    • dreamy doesn’t have to be a doctor by any means .. a bcba, a case manager, an inclusion specialist, a social worker, a developmental ped – anyone or any combo of people with the tools and the heart can fit the bill!

  7. I can’t wait to see what you do next!!

    After many negative experiences with some horrible quacks, I finally found a doc for K who walks on water. She doesn’t take my insurance and I would sell a kidney if I needed to to see her. BUT… she showers love and attention on BOTH of my kids and every visit ends in a hug. ( and probably a whispered ” I love you” out of my mouth but I just can’t help myself. ).
    Sorry that all of our kids have to fight so damn hard every single day.

  8. We’re feeling pretty overwhelmed at the moment too. I recently (now that he’s 15!!) found a place in our state that does any kind of therapy for kids on the spectrum.(& YAY our ins will reimburse us bc there’s no where else within 30 miles) The head psychologist there said “DE is about the worst state to have autism in”. We are finally getting him some appropriate help after fighting for it all these years. My fear is that it’s too little too late. He’s made amazing gains over the years, but lately has taken a major turn for the worst. I fear adulthood ebing right arund the corner…

  9. still on my quest to find that doctor who I would follow to the ends of the earth for my kids…hoping this new one we just changed to will be THE one because I am tired…tired of them not listening to me, tired of being told “oh it’s just his hearing” or some other nonsense ( there is NOTHING wrong with my son’s hearing …they tested that and proved ME right! …Oye) I am tired of three years of fighting to get an EEG done, after our Specialist, who btw, I would have followed to the ends of the earth, closed His practice….I will stop before this turns into a blog rant of my own! LOL…thank you Jess, for as usual, speaking in such a manner that makes me think you have a window into my own mind!

  10. We also just LOST our wonderful, perfect as they come Dr which I am convinced is the reason for the recent down turn. She has been with him since he was 5 & 6 months ago, moved uot of state. While I’d love to follow..it’s just not a possibility.

    • argh .. it’s heartbreaking when we lose the people in whom we’ve invested so much. all the best finding the *next* dreamy.

  11. that’s the very best thing about this blog. you write about your life…yet you’re always making it about others. about supporting others, boosting them up, loving them anyway possible. it’s a wonderful thing, jess, thanks for these posts.

  12. “Though I’m not ready to write about it yet, I will tell you that I’m working on finding ways to make things different. That I found inroads to the seats of power – or more accurately, they found me – and we are moving forward to find ways to help.”
    Jess – If you need help with whatever it is you have going on, count me IN.

  13. I am so sorry you have been sent reeling lately and so glad you have your Dr. Dreamy.

    We sort of have two doctors that are mostly helpful, and also a wonderful 1-on-1 therapist that he sees once a week and we sweat blood every month to pay. But mostly I just feel so on my own for how to get Jacob over all the big speed bumps that just seem to go on & on & on, strewn across his developmental path. Because his language processing issues are still so large and in the way of everything, because without language proficiency, abstraction is so hard, and higher learning is all about abstraction now, isn’t it?

  14. Well the good doctor/medical director from BCBS of North Dakota testified in our hearing yesterday that “most kids with autism are mentally retarded” and there are no proven treatments. Yeah. That’s what he said.

    God help us.

  15. I am curious what the SLP said that was so eye-opening. I am an SLP and I wonder what she saw…it’s a professional curiosity….I am always looking for new insight.
    If you would be willing to share any of it, please email me. If not, I understand.

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