Friday, September 14, 2007

Tuesday

“I think I’m coming down with something,” I told hubby yesterday. My throat hurt, I was dizzy and nauseous, and the thought of food repelled me – but hubby had booked the day off to take the kids to the fair, and I didn’t want them to miss it.

In retrospect, it seems so obvious. Vague flu-like symptoms, an upset stomach but no concrete signs of illness such as fever or barfing – this, for me, is a classic case of anxiety. It was the upper-intestinal gas that really gave it away – I belched loudly all the way to the fairgrounds, and then felt a sudden rush of returning good health as soon as we walked through the gates.

The odd thing, as always, was that I didn’t feel anxious – sure, I was a little stressed about how late the Pie’s nap was running, a little worried that Bub had not fully recovered from a brief bout of fever, but these concerns were hardly overwhelming – if worse came to worst we could always brave the weekend crowds once everybody made a full recovery.

Today the symptoms are back – mostly just dizziness – and again, the solution seems so obvious I’m amazed that I missed it: this is all about Tuesday.

I’m filling out the paperwork this week, rating Bub’s problems on a three-point scale. Refuses to comply with adult requests? Three. Leaves seat in situations where remaining seated is expected? Two. Spiteful or vindictive? Zero. The nursery school teachers are filling out forms as well, noting his attachment to objects, the absence of empathy. Ruby left a reassuring message on our answering machine, explaining that they’re erring on the side of overestimating his problems, not wanting to minimize anything in case that would prevent him from being seen.

I’ve done my homework – I know how to crunch the numbers, and the fact is that Bub falls well short of the threshold for autism according to the checklist we’re using: he has anywhere from 8 to 11 “wrong” answers, and the cut-off for Asperger’s and PDD-NOS is 15, while children with classic (Kanner’s) autism usually score above 22.

But then there are the things that don’t show up on the checklist. The way he refuses to touch the car door when there are a few droplets of rain on it. The difficulty he still experiences remembering and talking about past events, even exciting events that occurred only a few hours ago. I’ve been yo-yo-ing madly these last few weeks, seeing massive improvements in pronoun use and episodic memory, but also being confronted with some spectacular disasters (Ejection from VBS; Meltdown at the Little Gym).

To be honest, I find Bub to be a pretty easy kid to get along with these days. He is cheerful, polite, compliant. But when I go to pick him up at his new home-care, I discover that he has met every request that day with a shout of “No!” He wouldn’t go out for a walk; he wouldn’t play in the back yard; he wouldn’t sit down for his lunch; he wouldn’t eat his snack. He’s spent five afternoons there (including lunch and snack) and has eaten almost nothing.

Briefly, I see my son through this care-giver’s eyes: he’s defiant, troublesome, a bad example to the two-year-olds who look up to him and follow his lead.

We went to the fair last night, and Bub rode a pony. He spun around on the Berry-Go-Round and met a giant talking robot. He sat at a picnic table and ate cheese slices, yellow peppers, and a banana (he refused to try my cheese pizza). When he was done his makeshift supper, he and the Pie grabbed sticks and took turns tapping a tree trunk, dancing to the Celtic music that was playing in the bandstand. “Do you see a tall, beautiful tree?” he asked me, and I told him that I did.

We went to the Birds of Prey exhibit; we rode a tractor-pulled wagon to the Agricultural building and said hello to the geese and piglets and newborn lambs.

In three hours of near-constant transitions in a completely unfamiliar environment, there were no meltdowns, no protests, no signs of exhaustion from the sensory overload of the midway.

I don’t know what to expect or desire from Tuesday’s session at the PDD Diagnostic Clinic. I don’t feel afraid or worried – but maybe my body knows something I don't.

51 comments:

Kimberly said...

It's a hard place to be in, wanting a diagnosis, but not wanting *that* diagnosis. Knowing *something* is not right, but not sure what that something is when asked to define it on a three point scale.

I feel for you. I don't know what I want from your meeting on Tuesday either. I suspect that it's the same thing you do: The very best possible answer to how to ensure that Bub grows into the happiest, most productive man he can possibly be.

Good luck.

Laural Dawn said...

I'm thinking of you as you go through that. I hope it goes well. I can't imagine the stress facing you.

Mad Hatter said...

Oh, I have no time to comment but I just wanted to say that I read this and I am thinking about you. It's going to be an anxious weekend. How could it be otherwise?

cinnamon gurl said...

I get those feelings, even if neither possibility is exactly worrying in itself. I think it's just the uncertainty, knowing that either possibility is likely to mean change one way or another... change is scary.

Good for you for recognizing... I still don't recognize those signs every time, and it really does help just to acknowledge what you're feeling anxious about.

Kyla said...

I hate that paperwork. What if I put 2 when it should be a 3? Or God-forbid, a 1 when it should be a 2?! What if something is missed by my faulty internal rating system?

It is overwhelming.

Just remember, the paperwork does not stand alone. Make a list of those things that you've noted to be troublesome, even if they aren't on the paperwork, and bring them up at the meeting. Do your best to paint them an entire picture, because when our children's well-being is at stake, it sometimes takes more than the 1, 2, 3's that the professionals offer up.

Good luck, B&P. I'll be praying for you all.

Lori said...

Well, first, that picture is adorable.

All I can say is that you are a wise and loving mother to be able to take in the whole of who your child is, even when sometimes there are things you wish weren't there. It's always best to live in reality, and face whatever needs to be faced.

He sounds like a boy with a lot of promise, and that once you know how to best help him navigate this crazy world, he will find his way. That's what I will be praying for- for both of you.

P.S.- I have one nephew with autism, and one with Aspergers, so I am very sympathetic to the fear and uncertainty those labels bring.

bubandpie said...

I should add that this is only the first of two days of testing, and the second one isn't until the end of October. So the uncertainty will continue - I'm not even sure how much (if any) feedback we'll get from Tuesday's appointments.

Karen said...

First off, he's just too cute on the pony. It's nice that the fair was a vacation for him from the stresses of transitions - way too fun to fuss, right? And, yeah, it's kind of nice that you aren't feeling stressed too - even though you are under stress, after all you've been waiting a long time for this appointment & you badly want to make life work for Bub. You are doing a great job. Whatever it is, you can probably let your body take the brunt this time around for the weekend; your brain and heart can play catch-up on Tuesday (when I imagine you'll need your body in perfect working condition to deal with the appointment, so I'll hope for that.)

Janet said...

I find it so hard to fill out questionnaries about my children. Their behaviours are so familiar and intimate to me, I find it hard to step back and analyze.

I will be thinking of you and the sweet little boy on the pony.

Lisa b said...

It took me years to realise how sick anxiety could make me. I cannot imagine how you are feeling and I am sure you will feel better Tuesday once you are actually dealing with the assessment rather than dreading it.
Bub certainly has a lot going on with the start of a new school and a sitter. Those changes certainly cannot be helping. It is amazing though how he handled all the transitions at the fair so well.

Blog Antagonist said...

I know that feeling well, and I know all the doubts and fears you are experiencing. I know that gut wrenching anxiety about what others are thinking about your child. Parenting children like ours is a rollercoaster ride that doesn't seem to end. Seriously...if you ever want to talk, feel free to email me.

Angela said...

Keep the faith and try to stay strong? I can't imagine the anxiety that you must feel. Dizziness is always the first sign for me too...I'll be thinking of you.

Ally said...

Oh. I'm thinking of you. I hope Tuesday comes quickly and that you get some of the answers you need.

Mouse said...

We're on this see-saw too. Started out with the fear of a diagnosis and looking for anything that might convince us we wouldn't get it to hoping we get something that will qualify him for some services in school but fearing that he may improve just enough in the meantime to fall just outside of PDD-NOS or Asperger's. Email coming soon.

slouching mom said...

Diagnosis (whether within or without the norm) is such a double-edged sword, isn't it? On the one hand, it provides closure -- an end to a time fraught with suspicions and second-guessing. On the other hand, it feels so definite and constricting.

Omaha Mama said...

Bracing yourself for all of it. Your body does know.

Just pray for peace. The Serenity Prayer helps me so much is times like these. But I've never had to go to any type of Diagnostic Clinic, so what do I know?

Good luck - and please take care of yourself too.

Patois said...

Just want to add to others' sending of encouragement to you. And he's a doll on the pony.

dawn224 said...

He's freaking adorable!

I'm really coming into this in the middle of the story, so total apologies if this question has already been addressed - is he getting any speech/language evals? If yes (or if no) if you have any questions, send them my way and I'll do my best to help you find answers (PDD ish stuff and pre kindy wasn't my focus for the last three years, but I can find stuff.)

Chaotic Joy said...

I have found it's very hard to be objective in rating your own child. It's so subjective. If Ben is having a good day, it almost seems like nothing is wrong at all. But on a bad day I think I could mark 3 across the board. And I always wonder, is this genuinely a problem or did I create it? But I understand your anxienty, and I too get physical side effects whenever I experience it.

On a lighter note, when I read the first paragraph I totally thought you were going to tell us you were pregnant.

Jenifer said...

How could you not be anxious on any level? This is your child and you are worried...period.

Even if you don't after this first session at least you are halfway there, halfway closer to getting some more answers.

I wish you peace of mind and heart and hopefully the weekend will lift your spirits.

Beck said...

He's a beautiful boy.

NotSoSage said...

I truly hope that there are some answers for you through this process, whatever they are, I'm sure it's better than waiting.

Lawyer Mama said...

That's an adorable picture!

I haven't been there, but I can understand your anxiety. I'm sure I would be in the same place in your situation. It's so hard to look at our children objectively, isn't it? We see each leaf on the tree, but we don't always see that it's tall and beautiful, as Bub said. Just know that I'll be thinking of you on Tuesday.

A Whole Lot of Nothing said...

Trust in your gut. You know what's best for your child. It's definitely hard trying to find the right help and label for it. Sometimes there ends up being no label which can be both good and bad.
I wish you all the best with him.

Aliki2006 said...

I'm thinking of you too, it's such a hard waiting game. I hope you get some answers after the weekend, even if you have to wait until October for others.

the end of motherhood said...

Not knowing is the worst. It won't last.

Veronica Mitchell said...

I admire your steadiness. I freak out a little just choosing the right number of stars when I rate my Netflix videos. Flu-like symptoms seem entirely called for and sensible.

I hope all goes well, even if you don't know what that means right now.

flutter said...

Our bodies often are clued in WAY before we are.

creative-type dad said...

Hang in there - waiting and wondering is the worse feeling...

Julie Pippert said...

It's so good that you understand...but so understandable that you feel this way. Thinking of you.

Julie
Using My Words

nowheymama said...

He is so beautiful.

I *hated* taking Katherine for all of her allergy testing the first time, and it hasn't gotten much easier. But, I'd rather know than be in limbo. I hope you all find some answers during these months of testing.

Luisa Perkins said...

Have you looked into SPD/SID any further?

Sarcasta-Mom said...

Wow, I'm going through almost the same experience, except my son is older. What's even stranger is that we have a meeting about these same issues on Tuesday. I just blogged about it, so feel free to check it out.

We're convinced G has Aspergers, but it's been very hard for us to get him seen. All I can say is try to hang on to your sanity and try not to let the anxiety overwhelm you. If you ever need another mom to talk to who's going through the same thing, please feel free to tap me any time....

Swistle said...

Oh, this is hard!

Christina said...

I understand the anxiety. I was filling out those same forms and circling numbers just a few weeks ago. Be totally honest with yourself when you go to the evaluation - obviously you don't want to overestimate his non-typical behaviors, but you don't want to underestimate them, either. I was so stressed when filling out those tests, wondering just how close something was to a 2, or if it was really more of a 1, trying not to read into the test to skew the answers and so on.

Since the eval, Cordy has been acting better, strangely. Barely any meltdowns, following some directions, better language use, etc. It's baffling.

If you feel deep down that something isn't right - and you must since you set up the evaluation - stress that. They only get that short glimpse of him, so they rely on you to know what day-to-day life is like.

I was terrified that day, my stomach in knots, but I feel like a big weight has been lifted now. It'll all go OK, no matter what the outcome.

Good luck. I look forward to hearing the details.

Marian said...

Keep in mind that autism is a HUGE, complicated spectrum, with infinite variation, and that, even with a precise diagnosis, there will be in reality-- no matter what they present-- NO defined understanding and treatment for his unique make-up, particularly as he grows older. "Does he have IT or does he not" may be a question that doesn't get answered. Even if they say no, he may have neurological shades and tendencies. **Diagnosis or not, the bottom line is that, as anyone with any child should do, you will proceed with doing what is best for the unique creature he is.*** Keep on doing what you are doing!
Best of luck to you.
--mom of an autistic kid

Suki said...

Good luck, good luck.

I hardly know what to say... except that it's going to be a very long, hard struggle for you and for Bub no matter whether he's labelled as "autistic" or not. He IS different from average kids, which means he has different needs which need to be understood. And you, as a sensitive, perceptive and intelligent mom, are the best person to understand him. No matter what Tuesday brings, you'll make it through.
Good luck again.

Buffy said...

New to the blog...but what a touching post. Bub is adorable. Hugs to you all.

nomotherearth said...

The waiting and not knowing is enough to make anyone sick. I always just want final answers. Thinking of you.

Another cutie picture, btw.

Angela said...

Sounds like it was a blast. I get feeling sick when I getvery orried too. Hoping the best for you guys

k said...

My son has some "stuff" that sounds a lot like Bub. We looked into Sensory Integration and were evaluated for that. After a few months of OT we saw drastic improvement! Just a thought. One diagnosis doesn't necessarily exclude the other.

painted maypole said...

your body knows things your brain doesn't. at one of the most stressful times in my life, a time I was trying to hold it all together in a very public eye, I broke out in hives all over my body. The doctor said "no, people don't usually get hives from stress." Then I explained to her what was going on. "I think I underestimated your stress" she said.

you'll be in my prayers these next few days, and particularly on Tuesday.

bubandpie said...

Luisa, K - This assessment is the gateway for OT, along with everything else. OT was recommended at the screening last November, so Bub was added to the case load of one of the therapists, but they won't actually start any therapy until after he's been fully assessed. (Do I sound frustrated? Because I am.)

Bon said...

that feeling of anxiety, physical dread that you cannot talk yourself out of...that's a rough way to spend the weekend, and i send the most peacable vibes i can your way.

i don't know - just as an invested reader - what i want you to find out on Tuesday, either. i second Kimberly's very top comment, and wish for you all to be heard and given lots of thought and time by the professional you see.

Emily said...

Three thoughts:
1) This is a good thing. You are taking a step towards helping your child, whether he is just a very particular kid or has something diagnosable. It is reasonable to be anxious, but I hope you also take comfort in the positive side of this all.
2) I hope it goes really well.
3) The pony pic is really, really cute.

Mommy off the Record said...

Bub looks so happy in that picture! Regardless of the daycare experience, he sounds like a sweet little guy.

I hope the first set of tests goes well. I can only imagine how stressful it is for you to go through this.

mek said...

Just wanted to add myself to the group of people holding you and your family in our thoughts as you go through this process. And how adorable Bub is on the pony, and the Pie in her hat!

Kathryn said...

I am new to your blog, and I must say I love your writing. Very fun to read.
On a serious note, I know a bit about autism as my sister teaches autistic children, and you are right in thinking that he doesn't fit the peramiters for autism, from what you've described. Perhaps the struggles he is having right now is just because he is in a new home care. Maybe he is just going through an adjustment period. My oldest son never went through the "terrible twos" but when he turned 3 we definitely had a struggle on our hands. He suddenly had strange fears (touching something that was wet was one of them, or throwing a fit when his hands were slightly dirty) that he never had before. Luckily, it was a phase. Either way, you are right in checking it out, for your sanity. Good luck on Tuesday. You and your family are in my thoughts.
Kathryn

fritterfarmers.blogspot.com

radical mama said...

I hope you can find some peace and comfort, no matter what the news. Take care of yourself, if you can.

Magpie said...

Good luck. I hope your anxiety has abated some.

Eve said...

I'm going to comment as a psychologist and mother, FWIW. Not every problem is diagnosable, and many that we think are diagnosable today are the result of culture and expectations, not bona fide psychiatric disorders.

The combination of being male and having a possibly sensitive temperament are about all it takes to get a little boy booted out of most group situations, or getting the teacher to howl "ADHD" or "AUTISM!" I've been through it with my kids and my kid clients, and it's not always something horrible.

Your little boy sounds pretty normal for a little boy. My boys tended to be odder than my girls, and each was kicked out of at least one group activity by age five. Now they are upstanding citizens.

Good luck, and thanks for your blog. I really enjoy it.