Tuesday, September 18, 2007

Anticlimax

That so wasn't worth a whole night of not sleeping.

We spent an hour with the psychiatrist, during which time he interacted minimally with Bub: asked him to come over to a chair (he refused), asked him how old he was (his answer: "Elephant!"), and said hello and goodbye (which Bub ignored initially, and then reciprocated when prompted).

Other than that, he interviewed us: got us to describe what our concerns were, asked a few follow-up questions, wrote everything down on a notepad. He was deliberately inscrutable, refusing to form a hypothesis until the diagnostic process is complete. All he said, really, is that our task is to sort out whether Bub's issues derive wholly from his language delays, or whether there are social and behavioural components causing his problems with language use.

I feel vaguely embarrassed, as if I've been revealed as some sort of Munchhausen-by-proxy mother, seeking attention by obsessing over her child's minor quirks. While we were in the waiting room, a tall, lanky teenager came in, his face sunburnt, his hair bleached almost white by the sun. A clipboard-wielding therapist brought him over to his mother and said, "I'll let Kenneth tell you how we did."

The boy looked down silently, miserably, and after a moment the therapist conceded defeat. "Basically, we did not establish contact."

The mother exhaled sharply. "That's just great." She stood up to go and her son immediately rose to his feet and followed her.

45 comments:

Janet said...

I hope you don't continue to have anxiety-driven dreams until you do have answers. Although, I say this knowing that I would, were I you.

I made cinnamon buns today. If you didn't live quite so far down the 401, I would bring some over for your family.

Suki said...

Good luck.

And no, don't feel like an obsessive mom. We all have the right to figure out what is what, so we know better how to deal with it.

And since it's been a particularly bad day for me too, I can't be as sunny here as I would have liked.
Either way, it's going to be alright. Hard work, yes, but alright.

Catherine said...

Elephants are ancient and wise creatures. I can only assume that Bub has wisdom and knowledge beyond his years, and we will all be learning from him some day.

I joking...but only a little. I think fondly of Bub (though I admit, have never met him).

I hope you're hanging in there.

Kimberly said...

That won't be you. You have contact. You have a happy, loving, great little boy who has some very real quirks. It's not all in your head, you're not making it up. But you're not looking at your future there, either.


(www.parentingwithoutalicense.com)

Alpha DogMa said...

Yes, I too am always fearful of labelled as a Munchausen Syndrome by Proxy Mom. Does everyone? So I try to balance it out by being way too self-deprecating and minimizing my own gut reactions. I am just a barrel of insecure monkeys!

Blog Antagonist said...

Don't be disheartened by that. Bub is four, and he's too young to know he's supposed to be irascible and uncooperative. Diminutive One loves his therapist and has formed a wonderful rapport with her.

Also, don't underestimate how much a good therapist will help you. If Bub doesn't talk, you talk.

It works, but you have to be patient. Hang in there.

Kyla said...

"Munchhausen-by-proxy mother, seeking attention by obsessing over her child's minor quirks"

Yes. I mean, I have medical verification that something isn't right, but I always think, "Am I over analyzing this?" I think so much of it has to do with our mother's intuition and not feeling 100% comfortable listening to it. If you know something isn't right, you KNOW it, even if you'd rather not. And it causes that internal struggle that maybe, just maybe you are obsessing over nothing at all. I've learned that almost always, that little twist in your gut is right on.

Sarcasta-Mom said...

Sounds like you may need to go see some else. You know Bub better than anyone, and if you think something's not right, then that's not ridiculous worry.

I've been through the same thing with G- I worried constantly that I was making way to much over "little things". But now, we're finally starting to get help (we had our own meeting today as well).

Stand your ground. Your a good mom, and you know what's best for your little guy. Be persistant- it may take time, but it will pay off in the end.

slouching mom said...

Can I just say?

(Why yes, I can, and I will.)

I don't like psychiatrists. But then again, I was trained in clinical psychology, so a wee bit biased am I.

Still.

Aliki2006 said...

(((hugs))) I'm sorry--sometimes certain doctors can just leave you cold with that empty, frustrated, feeling-so-little-sense of yourself.

As others have said--trust your instincts, you know Bub the best.

Julie Pippert said...

I imagine most moms would feel the same way...I know I have.

Much better to feel that way, though, than regretful for not checking.

How soon do you get the information from this part?

Hang in there and the new 60 calorie caramel chocolate sticks from Hershey's are mighty good. Or stick with the No Pudge Fudge.

Or be like me and hang out in margaritaville.

Julie
Using My Words

Christine said...

some how that story of the teenager made my heart sink to my feet.


and don't feel embarrassed--you are a concerned parent and choosing to check things out. you are a good mama, you.

Mouse said...

"All he said, really, is that our task is to sort out..."

Is this "our" your family or is the doctor part of that too? Because if a doctor suggested to me that I needed to figure that out, I might respond with an uncharacteristic curse-streak. And even if he was including himself, I'd have to restrain myself from saying, "D'uh!"

Trillian and I both have our gut feelings about what's going on, but we'd really like that outside perspective.

Sometimes it feels like a no-win situation. If you weren't obsessing over Bub's "minor quirks," you'd feel like everyone was judging you for not doing anything.

Anonymous said...

I love your blog. As a 53 year old mom of grown NT sons I have to gently tell you that it never ends. I was rabid in getting my kids tested for EVERYTHING and often felt foolish, but so what! We must advocate for our kids every step of the way so good for you. Stay calm, one foot in front of the other, and all will be fine. My oldest didn't speak until he was well into his fourth year, same for toilet training, and I could go on and on. Today he is an adult with quirks for sure, but happy and fine. So will be Bub and Pie. Sadly you won't know that for about 20 years so pace yourself!!!

Veronica Mitchell said...

I sometimes wonder whether doctors play it close to the chest out of unwillingness to misdiagnose, or a perverse pleasure in having power over helpless parents. But maybe I am too cynical.

I am always impressed by the clear eye and honesty you use in writing about your fears. I hope things get some resolution soon.

bubandpie said...

Janet - Tears leapt into my eyes when I read this comment this afternoon - I can almost smell the cinnamon from here.

SM, Veronica - I think a lot of my discomfort stemmed from the fact that I had met the psychiatrist before (he was the one I was paired with for my library talk on The Curious Incident of the Dog in the Night-time). On that occasion we were peers, but suddenly in this situation he was the expert - and an expert who's grilling me on why I think my son may be autistic, in the face of his vast expertise.

Christine - That's how I felt when I saw them, too - I don't know when I've seen a face so desperately sad as that boy's.

Mouse - By "our" he really meant "their" - I don't think he was putting the responsibility on us at all - this was just the meeting where he squeezes us dry, I guess. I very much hope that the rest of the meetings will involve more focus on Bub and less on us - not because I feel I have nothing to add, but because I've been living too long with my thoughts and questions - I'm so close to it all now I don't feel I have any perspective at all, and I'm desperate for the opinion of an informed, objective outsider.

Anonymous - Thank you.

Kelly said...

Ouch. That closing event left me heartbroken.

jen said...

so much of it falls back on us as mothers. to navigate. to fret. to sort out.

i don't have great words to add here but i am listening and caring.

NotSoSage said...

It's so tough isn't it? We're made to feel obsessive and paranoid when we bring our concerns to the table, and negligent when we haven't caught on to something soon enough. You are doing what's right by Bub. I hope that once the full diagnostic process is done, you'll feel like you know what direction you're headed.

Jenifer said...

Comment 20, maybe a smile?
I don't think you are obsessive, just concerned and rightly so. I hope that in the next few months you do get more of those answers you are looking for, something to shed some light and offer insight into some of those questions.

Lawyer Mama said...

You can never win. But your momma gut is telling you something. You *know* that something is off. Don't doubt yourself. (I know. Easier said than done.)

Mad Hatter said...

The story of that older boy: so haunting in light of all your fears.

I believe in that little elephant of yours. I believe in you as his mother.

Omaha Mama said...

Seems like they could have brought the mom back to the boy and therapist for that kind of report. Nothing like humiliating him further. Sheesh.

I don't think you are a m-by-proxy mom. I think you are intuitive and hoping to help your son if he needs it. That's just being a mom. I hope that the rest of the diagnostic clinic process goes better for you. And that you can let go of some of the fear and anguish. It must be tearing you up.

Jen said...

You know, when someone in my book group was concerned during the process of finding answers about her son, one of the (three) child psychologists in the group told her to be very much less concerned with the label and worry only about the goals she had in mind and the services that would get him/them there.

The mom, who had been intent on finding the label, was taken back a bit, but has over the intervening couple of years agreed with this heartily.

Basically, getting a specific label if you don't fit in a category perfectly does nothing but restrict your options. That is, if you get your kid diagnosed X, but he also has quirk Z that's not part of X? Well, it's a lot harder to get treatment/accomodations for Z, because it's not part of X.

Try to concentrate on the things you think are in need of treating, think of the goals you have for his way of being in the world and work from there. A diagnosis in this sort of situation really means nothing, in fact it can even be limiting.

I don't know if I got anywhere near making my point here, but I guess the take home message is to concentrate on specific skills or behaviors and getting therapy/treatment for those and not even worry about the label.

Jill said...

Sometimes specialists just aren't so special, are they. I hope the answers become more clear as he grows.

Terri said...

I second Veronica in saying that I really appreciate the honesty in your writing about your fears. I can't imagine how frustrating your quest for answers must be at times. I do relate to your concern about obsessing over your child's quirks because this is exactly what I do. Since she was in kindergarten, I've wondered if my oldest is ADD. Although her symptoms don't seem pronounced, I've thought I should probably get her tested, yet I have that fear that I'm over analyzing and obsessing especially when I'm told that I am.

I love my children, quirks and all, but as a mother I want to do everything I can to maximize their potential and give them the best possible chance for success. If this makes me obsessive in my quest to find the best way to meet that goal then so be it.

I do hope you get the answers your looking for soon so you can have some closure in this matter.

Ally said...

Do NOT let yourself feel like a make-something-out-of-nothing mom. It is so much better to be cautious, to trust your instincts, and follow up when you think something's not quite right. If it ends up being nothing worth worrying about, then great, but if it ends up being something, at least you can intervene early and get the necessary help.

Marian said...

Can I just "ditto" notsosage's comment? That's just about exactly what I had to say. And what jen said is exactly what I was trying to communicate out of my experience the other day. She did better.

Suz said...

I recognize that feeling, when I took the boys to be evaluated when they weren't walking at 15 months. I'm sure that I'm going to feel it again at some point. I'm trying to learn how to accept it - it just means that I'm being proactive, doing the best that I can.

Patois said...

We overthink, we overanalyze, we overcare, we overwhelm ourselves. They're our children. We have no other option. Plow through. You will. He will.

Miscellaneous-Mum said...

Oh, dear. Just caught up on the last 3 posts or so. How nail-chewingly frustrating a time it's been :(
I'm sorry :(

cinnamon gurl said...

The thing is, WE know our kids the best. Doctors and psychiatrists and psychometrists and every other specialist may be experts on x, y, or z, but we are the experts on our kids, and if we don't advocate for them, often with resistance, then who will? I have felt like I had my hand slapped for being obsessive and visiting the doctor for Swee'pea only to have my suspicions confirmed later.

(OK, just read other comments and see that many have already said this AND talked about x's and z's...)

Christina said...

I can so relate to the Munchhausen-by-proxy mother feeling. I've doubted my own thoughts and feelings so many times about Cordy. At every screening and evaluation, I spent at least part of the time wondering if it was all in my head and they were going to scold me for bringing her in. After all - she talks, she plays, she interacts a little.

But our school psychologist told me that the parent is the best advocate for his/her child, and it's far better to get any suspicions checked out than let them go. You have valid concerns with Bub, and you're doing exactly what you should be doing as a good mom.

Yes, there are kids with far more serious problems (like the teen you described), but that doesn't make Bub's delays any less of a concern.

I'm sorry you only got half of the evaluation done. What will the next steps be in the process?

nowheymama said...

I couldn't have said it better than Notsosage did.

You are doing all the right things for yourself and your family.

Swistle said...

That story about the teenager--why did that make my eyes sting and fill?

painted maypole said...

oh, it must be hard as you, at the beginning of what may be a long road, watched that boy in the office. There's always so much more to the story than we could possibly know, and yet we write all the scenarios in our head - painful as they are.

Magpie said...

I'm glad it was an anticlimax for you - I hope the result/diagnosis is as well. The vignette about the teenager, though, is heartbreaking.

Jennifer (ponderosa) said...

That's it. I can't listen to any more. You must move to Bend.

One of my husband's childhood friends has a boy with autism, and the boy's been in therapy since he was just under 2. (He's 4 now.) He goes a couple times a week. It's considered a preschool program, there's a free bus which picks him up & returns him back home, he is with other kids who are also autistic. If you're interested to know what the therapy consists of, I will send you their email address.

I can't believe the run-around you're getting! It's insane!

Lisa b said...

When my daughter was two weeks old a friend, who happens to be a peditatrician, told me pretty much what jen said.
It has really let me sit back, look at the experts and ask them what they can do for me.
I'm sorry you have to endure this and I hope it gets you what you want for bub sooner rather than later.

Jaelithe said...

You wanna feel like everyone thinks you're a cracked Munchausen-by-proxy mom, try taking your child around to a host of varied aloof and deliberately obtuse specialists and claiming that said child refuses to EAT.

In other words, you have my empathy . . .

You are NOT crazy, and you DO know that your son needs some help, and you are doing just the right things to get him some help; it's everyone else who is acting silly. Hang in there.

Solidarity to my Mother-of-a-Quirky-Kid sisters.

Mel said...

(((You)))
I'm pulling for you guys. And I hope to god the next 'specialist' you get is a better communicator. Here's to hoping you can 'establish contact' with this clinic.

Her Bad Mother said...

That won't be you. that won't be you at all. I really, really believe that.

So banal to say, but - hang in there.

Binkytown said...

I felt a palpable *pang* at the end here. I can only imagine how you felt actually observing that.

But they are not you. Reapeat that 100 times. I see you are feeling better today, so you don't need to, but if you forget to feel better, repeat.

Amanda said...

Mmm, feeling inclined to peek out from behind Slouchy and say, "Me too!" Sometimes I think unlocking or revealing is better accomplished through less rigourously mechanical methodology, but then again, I grew up in a VW van in Eugene, Oregon.

Susanne said...

Phew. I'm only just reading all of your recent posts one after the other.

I hope very much for you that in the end of all this there will be an answer on how to help Bub and all of you.

Maybe it would be a good idea to remember that the diagnosis won't make him any different. Either way.

And a lot of doctors have a way that makes one feel like one is obsessing over nothing. The next time though it might have been that you should have seen this as grave. Anyway, in both our cultures everything is Mom's fault. Blah.

See, how encouraging I am...

Here's one of those virtual hugs.