LIFE IS A SPECTRUM

family-feet

INT. Master Bedroom. Morning. VERY. EARLY. MORNING.

Despite evidence to the contrary, this is not the aftermath of a natural disaster. It is – or once was – a tastefully decorated master bedroom. Now we can barely make out the outline of a bed beneath the mounds of dirty laundry, bath toys, baby bottles (yes, we allowed Willow a bottle again this week), half-filled sippy cups, wadded up tissues and half-empty bottles of children's Tylenol and Ibuprofen.

Four limp figures sprawl on the king-sized bed: two adults (sort of) and two children. One by one, they cough.

BILLY: Daddy has a cough.

(Billy coughs)

BILLY (cont.): Billy has a cough.

ME: Say, “I have a cough.”

BILLY: Mama has a cough.

ME: No, you have a cough.

(I cough.)

ME: And yes, I have a cough too.

(I take his hand and pat his own chest with it.)

ME:I have a cough ...” (I use his hand to point at Dave.) He has a cough. (Point at me.) You have a cough. (point at Willow) She has a cough.”

DAVE: I just love these little family learning moments.

CLOSE ON

ME as I narrow my eyes at him suspiciously and swig directly from my personal bottle of Tylenol cold medicine.

WILLOW: (clinks the medicine bottle with her bottle) Cheers!

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Total 19 comments

berenstainbears_doctor

Both my kids have stomach flu again ... which reminded me of the last time this perfect storm of illness hit our family. Because everything in this post pretty much still applies, because my kids have probably passed this on to any number of other unwary children in their classes, and because I'm just this lazy, I'm going to repost my thoughts on ...

Sickness and Autism

Originally posted: 02/19/2010 10:55 am

I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.

I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. [update: We have diversified into solar system toys and iPad apps.] And we don't have time for any political activism. Heck, we don't even have time for physical activism.

But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.

Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.

We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. [Note: we survived that visit amazingly well in the end.] And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.

We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:

1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.

2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.

3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.

4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.

5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.

6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.

7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.

8. Hold on tight and keep telling him we love him.

With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.

Reader Comments

I hope everyone is feeling well soon!

I hope the kids are feeling better soon, and that no visit to the doctor is necessary...

Hugs,
Wendy

Awwww...Hope everyone is feeling better soon. Sending virtual popsicles for the kids and vodka for mommy. =)

Total 3 comments

footstepsbeach

As I write this, it's the middle of the night – about 2 a.m. – and I can't sleep because my nose is stuffed up and I have this annoying scratchy cough. We've been through several restless nights now, with one child or the other unable to sleep due to this nasty cold. Now I have it.

 

I knew three nights ago that I was going to catch this thing. Willow straddled my chest at 2 a.m., nose running, unable to sleep, and after counting my eyes, ears, nose and mouth, she leaned her face very close to mine, took a deep breath ... and sneezed.

 

Ah, well. It's a mom's job to inhale the germs, gather them in our arms and walk the floor with them all night long, if necessary.

 

I wish I'd known about the headache a few nights ago. I should have given Willow Tylenol, in addition to the Vick's Vapor Rub. She couldn't tell me that her head hurt, but if my symptoms are anything to go by, she had a killer of a headache.

 

If Billy wakes up, should I give him Tylenol? I could ask him, “Does your head hurt?” But then again, I can't really rely on his answers for accuracy. Half the time, he repeats whatever words I put his mouth: "Does your head hurt?" Billy: "Head hurt."

 

If I get sick first, I have a better idea how they're feeling when it's their turn. I know what to watch for, what to medicate, how to empathize. I understand why they're cranky and sleepless and angry, because I've been there.

 

It's late at night and my mind is wandering; I'm tired and I've just taken cold medicine, and I'm wishing that autism was something I could catch for a few days. I wonder what it would be like to walk in Billy's shoes, live in his world, feel what he feels even for just a few hours.

 

Maybe if I could think with his brain for a day or two, I could learn to speak his language. And better teach him how to communicate in mine. Maybe I would understand his fear of kangaroos and feel the pain he feels at certain sounds.

 

And food: Is it the smell or sight or texture of some things that makes him physically sick? I would gladly be sick like him to feel what he feels and just be able to tell him, like I do when he has a cold, “I know. Here, this will make it better.”

 

I would love to understand his anger. He is a joyful child, and sometimes his anger surprises and confuses me. It seems to come from nowhere, but I know that's not true. Inside his mysterious and beautiful mind, there is a hidden source of his unhappiness, and I'd like to climb inside there, hunt it down, and deal with it, like I try to deal with the sadnesses and angers and unhappiness that I can see.

 

But most of all, I would like to feel his joy. When he closes his eyes, scoops sand between his fingers, lifts his hands to the sky and belly laughs as the grains filter back to the ground, I would like to inhale that happiness. I would like to dream what he dreams and catch a little bit of the giddiness that bubbles up in him so strongly that he wakes up literally in the middle of singing a song.

I can't walk in shoes. The best I can hope for is to stay close, walk alongside him, so that should he need me, all he has to do is reach out and take my hand.

Reader Comments

Sending You Hugs...

I hope you and your wee ones are feeling better soon...this piece moved me to tears, Amanda...

Wendy

The Guilt

You are so right about the guilt. I hate it. At least when we are ill first we have an idea. I hate second guessing. I am from the UK and my son Ben is 7 and a half years old and severely Autistic. He is non verbal, has challenging behaviour, is aggressive, self harmer etc etc. Over Christmas he was ill and he was really poorly for 2 weeks. I medicated him (we can only use suppositories) and I chose the middle strength. Later my Husband and Daughter were as ill and all they kept saying was how bad their heads were and there aching bodies, that they never felt as ill in their lives. They were diagnosed with flu and I hated myself. I get the same thing with new shoes. Bleeding blisters that I didn't know were happening as there was no wimpering or limping and worst of all he almost choked on Monday ....

Love this blog (I found you on Twitter) and have been reading it as have been up since 3am with Ben.

Karen xxx

So beautifully written. Very touching. I hope you feel better soon. That funk has gone around town at least 17 times already. It needs to go visit a new town. Loved the part about Willow sneezing. Caleb has learned to use his cough as a weapon of mass destruction. He actually premeditates a coughing attack aimed right at your face. It's horrible. I wonder if that's something ABA could address if we ever get our referrals out... =)

Walking with them

@Maura: You're absolutely right my friend. I have friends who have had to walk with their kids through unimaginable pain, all the while, praying that they could take it on themselves. My walk doesn't begin to compare. We all have those moments, though, like you said, when we wish we could take the walk FOR them.

@BD: As my mom says below, we're hoping that Willow has that kind of connection with Billy. She adores him so much, and as I was saying to someone recently, she's the best therapist that money can't buy. I'm waiting for her to get to the point that she can explain the kangaroo thing to me.

@Jen: I feel your pain. It would be great if we could feel theirs. It seems the least we moms of kids on the spectrum should be able to expect is a little bit of telepathy.

@Gina: Thank you for your words. That means a lot to me.

@Nan: Billy's lucky to have you. I've met so many parents of kids on the spectrum who are doing it alone, and I'm very lucky too to have a mom who has been walking with us all the way.

@Domestic Goddess: Tru dat.

@Jen: You bring up a very good point. I would hope that I would be able to relate more, but if there was nothing I could do to help, that would be a curse indeed.

I really appreciate all the support and feedback. It's been a long week ... but I know we all have those :-)

FYI, Today was the 14th day since I emailed Disney about our New Year's Eve troubles at Hollywood Studios. I received the automatic response saying that someone would contact me within 14 days, but as yet, I've heard nothing else. Watch this space ...

Guilty

I recently had a similar experience with catching a cold after the kids. It was a nasty one and I felt terrible for being so frustrated when the kids weren't sleeping! Oh well, there's always something to feel guilty about :(

To be in our kids' heads even for a day - I think it would be a blessing and a curse, especially if there still wasn't anything more we could do for them after.

I'd do anything, ANYTHING to get inside my kid's head. Just for five minutes. Just so I could understand.

FWIW

GL always denies pain. Even post-surgery, he insisted he had no pain. But when he is angry for no apparent reason, it's amazing how often Tylenol improves things. I figure when he's showing signs of distress of unknown origin, the recommended dose of Tylenol won't do any harm, and might help.

Beedah's 6th sense

I've always said that Willow will be Billy's best teacher/friend/guardian as they grow up. She adores her Beedah (brother) and makes every step with him. In time, she will be a big help to him and to you in understanding him, I'm sure. You are an outstanding mother.....and writer.

Total 12 comments

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