Tuesday, June 3, 2008
Back before Sharon and I were micropreemie parents and had developed a cult-ish love for Rachel Coleman and her amazing, emmy-nominated Signing Time series on PBS, we were big-time fans of Donald Trump's The Apprentice. So hopefully Mr. Trump will forgive my use of his image and his (probably) not-yet-trademarked phrase (I only believe this lack of trademarking to be the case because of a very clever adaptation of The Apprentice on our other favorite show, Sesame Street, when the street is visited by Mr. Grump).
In any event, neither of us are fired. On the contrary, we just ditched our private Speech Therapist, and in our assessment, not a moment too soon. Those of you who know me in real life (and my virtual buddies have probably picked up on this), I have always had a bristly streak, and my penchant for irritability has only been enhanced by being mama hen to my precious nearly two-year-old surviving micropreemie twin. Sharon is the cooler and more level-headed of the two of us. So, when Sharon gets up her goat (an all too appropriate phrase for a mommy who serves her young one at least three servings of goat milk a day), you know it's bad.
In any event, it's gotten harder and harder to deal with our now-former speech therapist, whose poor listening skills (as well as pronunciation skills--you'd think by now she'd realize our daughter's name is pronounced Ha-lee and not Hay-lee) are rivaled only by her organizational skills (she spent about twenty to thirty minutes of our session on Sunday trying to turn on a computer program) and her medical diagnostic skills (which are lacking, since she does not have an MD after her name). Although she wanted a renowned nutritionist (who proved herself a good listener and who never once said we should ignore the medical establishment and disregard the specialists at CHOP whom we see) to confirm her one-cure-fits-all dogma, this did not happen. The nutritionist did in fact pay careful attention to Hallie's serious diagnoses (particularly where food allergies are concerned) and devised a sensible plan for moving forward with Hallie's nutritional program. But this did not stop our former therapist from recommending that we move Hallie off of the foods she tolerates well onto foods to which she is highly allergic and to which she responds with rolling bouts of anaphylactic GI distress.
Let's backtrack a bit for a moment: yesterday morning, I decided to give Hallie a bit more rice than she had on Saturday (ten grains or so) or Sunday (five---she refused the rest, though went on to eat other food quite well). I got about a tablespoon into Hallie when she tossed the rest off of her tray. At the time I thought she did not like the texture or was just being a toddler (she did chew and swallow that tablespoon quite nicely). I should have known that Hallie is the one who should always be the one who lets us know when something is or is not okay. Right after I fed her a good-sized (for her) breakfast of two jars of fruit (apples and pears) and a decent amount of goat milk (a few ounces) and goat yogurt (another ounce or so), all of which she ate with gusto, Hallie began to vomit violently. At first neither of us were sure the culprit was rice (I consulted with Sharon about this right after it happened). But after she became quite congested and wheezy (sounding a lot like she used to when she was on cow milk or when she ingested other allergens during our failed food trials) and proceeded to vomit again three hours later (I gave her no more rice for lunch), to the point of turning purple and dry heaving at the end, and then turned a deathly gray pale color (similar to her coloring during her entire first year of life), we knew that she was having an FPIES reaction. She was unable to get back down to a nap (the second vomit happened mid nap) or settle down generally, and there was a large amount of undigested rice in her stool on top of all of this. We had speech therapy yesterday evening, and Hallie was a mess by the time we got there and less than focused as a result of all of this. We explained to our erstwhile therapist quite clearly that Hallie had failed her rice trial (not hugely surprising since rice is one of the biggest trigger foods in FPIES kids, along with most of the other typical first foods). When the therapist asked us if we brought food for Hallie to eat, we explained that her system needed a bit of a rest.
This all would seem logical to any intelligent listener, but not our intrepid, now former speech therapist. A logical, intelligent professional would realize that FPIES (a condition about which I forwarded our former therapist a concise, to-the-point synopsis written by leading allergists for lay people) is a serious medical condition and that, at the very least, it is not worth jeopardizing one's license, not to mention the health of one's patient, by ignoring this diagnosis. So imagine our surprise when we received an ultimatum via email this evening telling us that, if we refused to put Hallie onto a diet that consists of rice protein and coconut oil (to which she is also dangerously allergic), that she could no longer treat our kid.
I had only one thing to say to this: "You're fired!"
That felt really good, and we are happy to be free of a major stressor in our lives. We have learned a few good tricks for eliciting speech from our experience and even more about how to interview a speech therapist. Hallie is a visual learner (hence her mimicry of our beloved Rachel Coleman who has not only taught Hallie to identify and approximate signs for most of the letters of the alphabet, most colors, and innumerable words, but also how to approximate SAYING them). We need someone who will play to the strengths that Hallie demonstrates (visual learning, and learning while in motion) while respecting her medical diagnoses and the wishes of her parents.
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Reading this brought tears to my eyes. My Lucy, age 8 was a preemie and has spina bifida as well as cerebral palsy. We have fired MANY "professionals" over the past 8 years.
It is amazing to me how many parents DO NOT follow their instincts even when their child's life depends on it.
I'd love to send Hallie something autographed if that's ok. Drop an email to firstname.lastname@example.org Subject: autograph for Hallie (ask Rachel)
Good for you Abby (& Sharon)! Hallie is so blessed to have such dedicated and educated parents to fight for her! You guys inspire me to be a better mom!
I'm so sorry you had to deal with that... we've had to fire individuals over the years for reasons ranging from them not listening well all the way to being completely incompetent. Each confrontation is frustrating but some still can bring me to such anger that I am left shaking. If nothing else it's left me with a willingness to walk out if ANYTHING feels off and a renewed commitment to advocate for my kids - something I see both of you do tirelessly for Hallie, which always inspires me. That, and your amazing research skills!! :) I burst out laughing at your comment about harnessing the power of the google search...
Good for you! We fired our first speech therapist when she told us it was child abuse to get Noah a cochlear implant because he didn't have a choice in the matter. She also thought his feeding skills were "just fine" and we just weren't putting enough effort in. We're much happier with our current therapists.
P.S. I'm way jealous about Rachel Coleman's comment. I guess I'll have to get my own autograph at the conference in August! :)
Hooray!!! It's about bloody time you fired that pathetic excuse for a human being.
(Abby, who knows me in real life, will recognize this burst of temper.)
I'm really sorry to hear that rice is off the menu after all, but I am d*** glad that you are done with that woman. I mean, if she cannot even remember how to pronounce Hallie's name.....a speech therapist!?! I'd be left speechless if I weren't eager to use up my daily supply of profanity which I choke in while G. is still awake.....
You go! Frankly the rice and coconut oil diet sounds like something Jeff Probst would tout on Survivor.
As to the Signing Times videos, everytime Eliza is being harassed by one of the seemingly 826 therapists she has, she sings her version of the Baby Signing Times themesong. It is soothing to her to sing the song, but I had one idiot-now-fired-therapist tell me that I should not permit Eliza to watch the videos since they were going to delay her speech even further, which we all know is a bunch of hooey.
Sadly though Eliza's singing has confirmed that the next gerneation of my family is as tone deaf as the last one. :)
So happy she is FIRED! I hope you never have an experience like this again.
Good for you!!! :D
And I'm also jealous about Rachel's comment ;)
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