We had BamBam evaluated by a developmental pediatrician last week. During the two-plus hour appointment, I sat there feeling ashamed about pretty much everything right down to my genetic makeup. I’m not kidding about that. Fragile X was mentioned and guess where he got his one and only X chromosome. Yep, that would be me.
Now, I should not have been surprised about the fragile X thing. They mentioned at the autism talks that fragile X is the most common known single gene cause of autism, that fragile X is under-diagnosed, and that tests to rule out fragile X are almost always recommend when there is a diagnosis of an autism spectrum disorder, particularly if more than one child in the family is affected.
And then there’s the fact that I was a genetic counselor once upon a time, so it’s not like I was unfamiliar with the disorder. Still, it was a shock to hear it. I think part of that may have to do with the shame I was already feeling during the appointment that ramped up a bit at the mention of a genetic disorder. One that, if present, would have come directly from me. Possibly to both of my children. I know on an intellectual level that it’s ridiculous to feel ashamed because of my faulty genes. I have no control over it, didn’t even know it was there – which it’s probably not anyway because I don’t think either kid has the physical characteristics associated with fragile X. The doctor’s just being thorough. I don’t really know why I felt the shame, just that I felt it.
For most of the appointment, the doctor peppered us with a barrage of questions while his post doc and med student watched and BamBam roamed around the room. I felt myself get smaller with each question until I was wishing the floor would just swallow me whole.
“Why did you take baby aspirin during your pregnancy?”
“How much TV does he watch?”
“Does he eat meat?”
“He doesn’t drink milk? Have you tried chocolate milk?” My answer: He doesn’t like chocolate. That got me an exasperated look followed by, “Well, have you tried strawberry milk?” No, because I’m apparently an idiot. It’s possible I was feeling a wee bit defensive by this point.
“Why do you give him melatonin? Have you heard of sleep hygiene?” Uh, no.
“You say he uses jargon. Do you know the difference between immature and mature jargon?” Me: “Yes.” “What is it?” Well, okay, I can’t define it, but I know his is immature at least most of the time. After a few seconds of silence from me, he explained it thusly: “Immature jargon is the babbling that goes on with no intelligible words. It’s called mature jargon when it reaches the stage where there are some intelligible words mixed in.” See? I knew BamBam has mostly immature jargon, I just couldn’t put a definition into words on the spot.
“Do you use PECS with him?” Ha! I know this one: “Yes, we’re starting to do that on the iPad.” His reply: “That’s not PECS.” I beg to differ: “The name of the program actually is PECS.” “It stands for Picture Exchange Communication System. Exchange being the operative word, so the iPad doesn’t fit with the description.” Bite me, you belligerent blowhard. I’m pretty sure that last part was just in my head, but I’ll have to verify with Sparky before we go back for another appointment.
Then there was the GFCF testing thing. I had brought the lab report with me to ask the doctor’s opinion, but then he started asking me all kinds of questions about it. I was tired and stressed and I don’t do very well verbally answering questions fired at me in that type of situation. I’m a writer, not a talker. I need time to process. Anyway, he pulled up the website and basically started to impugn the integrity of the laboratory. Which felt like he was impugning my intelligence for choosing them to do this test. He talked to me about how to verify the legitimacy of a website and of a lab. He was very surprised when I told him I knew what CLIA certification is (it’s the program that regulates non-research laboratory testing). Unfortunately I couldn’t remember if I had checked it, so I just sat there feeling stupid because I should have checked and it seemed like I hadn’t. Turns out the lab is CLIA certified, so it’s possible that I looked it up before. I still feel pretty stupid about the whole thing. I said something at the end of the appointment about thinking that I had checked and the doctor must have finally realized what his words were doing to me because he said, “Nobody’s pointing any fingers.” Really? What’s that you’re doing with your hand then?
There was also the fact that BamBam had a dirty diaper when the doctor went to examine him and we had, of course, left the diaper bag in the car. You know, ’cause why would we need it during a long appointment like that when the doctor will almost certainly take his diaper off at some point. Hey, look, an honest mistake I can attach my shame to!
Right before we left, he said, “You’re clearly doing well.” I had to ask him what he meant because it was so incongruent with the rest of his comments. He said that Sparky and I seem to like each other and work well together and that we both seem to like BamBam, who seems very happy. In the car on the way home, Sparky said he clearly had not observed us in our natural environment.
My feelings of shame are by no means isolated to this appointment; this is just a sampling of shame. Sparky actually liked the doctor, so I’m pretty sure it was just my state of mind. We have another appointment with the same doctor this week for BeBop, so I guess we’ll see how that goes. I’ll get some ideas from my therapist about how to go in with an open mind and not feel at a disadvantage from the start.
The shame is poisonous and I hate it. I have to get rid of it, something I’m planning to talk to my therapist about ad nauseum in our appointment tomorrow.
What it comes down to is this: My shame keeps me from forgiving myself for things I shouldn’t even feel bad about. It’s holding me back.
And that’s a real shame.
Oh, sweetie! I have the shame issue, so I understand where you are coming from, but please be gentle with yourself. You have no reason to feel ashamed. Even if you gave the gene to your sons…how could you have known? Even if you forgot your diaper bag in the car… It’s easily retrieved. Even if you don’t know all the medical terms… you’re not a doctor! Why should you?
I could go on and on, but you get my point. Shame is something we put on ourselves that most of the time we don’t deserve! I’m glad Sparky liked him, ut he sounds like an arrogent ass to me!
Hang in there! You’re a great mom who loves her kids and who is trying her hardest to do the very best for them. What else could anyone ask for? I’m sure Bam Bam & Bebop know how much you love them (How could they not?) and when it comew right doen to it, what’s more important than that?
Breathe, breathe, and forgive. In that order. I wish I could send you strength and peace. They are lucky kids to have you both. Breathe.
Honey, that doctor sounds like he was in attack mode and holding you hostage to make you feel accountable for circumstances out of your control. Maybe he’s a good physician, maybe he is threatened by lay knowledge (as many doctors are) but he needs to kep his focus on helping your son!
FYI: Husband likes him, that’s great. Men are not so tuned in to any “subtle” cues of judgmental attitude (such as my mother in law calling me stupid, for example). This isn’t all in your head. And you ARE doing wonderfully in adverse circumstances.
i have observed MANY times the love you have and show for both boys..no question. If that doctor did this to you, I just wonder what he does to people who have less information than you.
BeBop will show him today!
Alright, so where did you get the faulty genes…YOU do NOT have faulty genes. YOU are PERFECT!! And if anyone slipped them in on you, well it sure as heck wasn’t your fault.
Please listen to every word Heidi says and allow her to help you to be calm, cool, and totally collected.
Hugs to you Michelle! What came to mind while reading your post is that you have a background in genetic counseling, I imagined myself or someone else who has no background would have felt after that appointment (I am sure I would have left in tears and furious)! That doctor could benefit from having some “grace”…idiot! Sounds like bedside manner is NOT his strength.
Just remember that God gave you these babies for a reason, cause He knew you could handle it. Even in times when you think you can’t you do! He wouldn’t have given that task lightly…you are an amazing strong woman and even through all this diversity you seem to manage the storm and move through…I admire you!!
Oh, this just makes my heart hurt for you. What a miserable day that sounds like.
Try to think a bit about this doctor’s communication style. It sounds poorly handled, though in the interest of thoroughness. It’s so much easier to hear questions as an attack, but if you can imagine what he’s trying to say and recognize that the way he’s conveying it is *his* mistake, maybe you can build yourself a little less shame around it.
Wouldn’t these exchanges feel different?
MD: A lot of kids who don’t like milk will drink chocolate milk.
Michelle: He doesn’t like chocolate.
MD: Well, some kids will drink strawberry. You might want to try that if you haven’t already.
MD: Melatonin can be a good solution for sleep, but I always suggest that parents think about other options, too. Has your pediatrician ever talked with you about sleep hygiene?
Disclaimer on that second one: my son takes melatonin before bed, and I have zero idea what sleep hygiene is. Maybe it has nothing to do with falling asleep. Maybe it just means I should sneak in and wash his hands during the night.
Or if all else fails, print out everyone’s comments here and subtly pull the page out to read it before you answer any questions. And picture us all standing behind you and sticking our tongues out at the doctor. (Sorry I always seem to offer the immature suggestions for handling your medical professionals, but you know that maturity has never been my strong point.)
Jenn, I love your comments…maybe I am immature too! i still wonder what the heck “sleep hygiene” is?? I know that the boys bathe at night?? i think their pediatrician rocks so anything he says or suggests is the right way to go in my book.
Well, gonna look up that sleep thing.
Shame is something I still struggle with and it’s been almost two years on that front. What I try to remember is that even if they do eventually pinpoint a specific genetic cause and it came from me, then I will know. And I will know that I did not do anything intentionally to have this happen. We can’t be held responsible for the things that are yet unknown.
I’ve been there. And it sucked. I know it sucked for you too. But it helped me understand that I can be assertive, respectful and open to ideas even if certain physicians can’t.
In my experiences, if you want to talk to someone who actually understands and can intelligently comment on the diet issue you need to see a nutritionist. I had a pediatrician tell me (without ever seeing my daughter before, or even looking at me as he was busy looking at the computer screen trying to find my daughter’s name for crying out loud) that a change in diet would never have made a difference. I’m guessing he didn’t say that to his diabetic patients. 😉 We found a different pediatrician.
Best of luck. There are always new days if not new doctors.