Feeds:
Posts
Comments

Archive for the ‘autism’ Category

In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”

Here it is:

Is it better to have your child wake screaming in pain in the middle of the night each night —ostensibly from as yet unproven or undiagnosed food allergies —and be relatively happy, energetic and otherwise fully functional during the day? You, yourself, on the other hand are in a constant state of siege mentality from lack of sleep and worry that there’s something you might be missing.

OR

Would you rather have your child sleep soundly in a drug-induced state which does, in fact, relieve all symptoms of the apparent food allergy? This same medication makes your child lethargic, drowsy and hyper-irritable while also dulling much of his cognitive functioning during waking hours. The result is a day full of constant struggle and frustration for both you and your child.

Which would you choose and why? Really, I want to know.

Advertisements

Read Full Post »

I’m trying hard lately to see the glass half full instead of half empty. But when my tank of sleep is running on fumes, it gets difficult to see past the haze and fog of sleeplessness and worry. In spite of getting some decent sleep last night —courtesy of a new prescription we tried with Nik which knocked him on his little hiney —I still feel exhausted and headachy today. I want a snow day off —a holiday from worry and constant watchfulness —just one day would be fine.

I’ve procrastinated too long to give the entire back story. Suffice to say, Nik is starting to show signs of developing a significant food allergy to legumes. You know — peanuts, green beans, lentils, peas, chick peas (garbanzos), guar, soy —lots of healthy sources of fiber and protein for a little guy who doesn’t yet actually bite and chew food. We’ve stopped giving him anything but fresh, plain, organic food so far in an effort to mitigate the rashes and gastric distress that seem to have popped up out of nowhere. Except, the odd thing is we think maybe they’ve been there all along and we didn’t know it. The clawing at an ear that’s not infected; the rubbing of his head and poking at his eyes in spite of being on medication to stop migraines. The gastric distress which causes him to wake screaming in the middle of the night every night —in spite of the fact that his reflux is well under control.

Nik’s modus operandi has always been to give us physical clues to follow. If we are too slow to pick up on them, his body always seems to know just when to kick it up a notch or two to really get our attention. At least, it sure seems that way every time it happens. We’ve gotten pretty good about paying attention and trying to decipher his messages before they reach a crisis stage. We don’t really have any choice; the one time we didn’t pick up on his cues for so long we almost lost him.

I feel like I am teetering on the razor’s edge all the time. Nik shows so many signs of being “normal and healthy” but the possibility of slipping off, of developing a major medical issue, is always just a hair’s breadth away. If I relax my guard, well…I just can’t. It’s the thing that keeps me so in tune to his every shiver and sigh —even in the twilight of sleep. Some people hear “food allergies” and think “What’s the big deal? Just don’t give him those foods.” In Nik’s case it’s not that simple right now.

This new development, if it really is an allergy —and wouldn’t it be nice to finally have a freaking answer— has provided a real conundrum. Where Nik is totally tube dependent right now, we must continue to give him formula. In an effort to help relieve some of Nik’s symptoms, we’ve recently stopped feeding him anything by mouth. But his formula contains soybean oil, and green beans, and pea protein. Oh, and guar (also a legume) in the form of the added fiber (think Benefiber. Yep, legume based.). Even with the absence of food —and now that we are hyper vigilant in watching for signs —we can see the changes in Nik immediately after he gets a tube feeding. The red ears, the runny nose, the clawing at his ear, tugging at his clothing —it all ramps up again. It’s the worst after dinner —his largest meal of the day.

Common belief holds that someone allergic to soy should be able to handle soy oil because the most of the sixteen different proteins are eliminated in the processing. Um, someone needs to explain that to Nik’s poor little body. He had a terrible reaction to one small cheez-it cracker yesterday at play group. (N.B. Nik has not exhibited any signs of allergic reactions to wheat or dairy.) The offending ingredient? Soybean oil.

The immediate reaction was small in and of itself but it tipped the balance just enough that Nik was miserable for the rest of the day —the screaming, crying, clawing at his ear, hitting himself in the head which have become so disturbingly familiar to us.

We saw the pediatrician yesterday to rule out an ear infection; we were all certain it wasn’t that but had to know before we could proceed down other avenues. We now have a referral to an allergist and a new prescription antihistamine, Atarax. Nik can’t take Benadryl because he has a paradox response; he’s up for hours and it gives him very little relief. Atarax is actually used for anti-anxiety as well and works differently than Benadryl. Where Benadryl works on peripheral histamine receptors (think skin and extremities), the Atarax binds to receptors within the GI and respiratory tracts —working more from the inside out than the outside in. Of course, that also means it has a bit stronger effect on the whole nervous system.

We gave Nik a dose just before dinner. I have to say, it did do wonders to keep the allergic response at bay. But poor Nik conked out at the dinner table and had to be poured into his pajamas and bed! He woke, briefly, about six and a half hours later —but he woke happy and pain-free! We gave him another dose —and a quiet toy to play with —and another half hour later he was out cold for the rest of the night. The drawback is that it knocks him out cold and has some lingering systemic effects. Today, he is off-balance and very subdued. He feels funny and knows it; he’s been very clingy and easily upset. Not a good long-term solution; we fought too hard to get him off of medications that affect him this way to go back. Oh, and let’s not forget the potential effects of central nervous system depressants on respiration; not a good fit for a child with a chronic lung disease.

So, here we sit, betwixt and between. We have theories but not enough evidence, some evidence that doesn’t fit, and a little boy who keeps trying to tell us what he needs but cannot make himself understood.

I think I understand how he feels.

Read Full Post »

His cries echo in the darkness; the witching hour has begun again. Each night it’s the same routine; he beckons with his plaintive cries as he bangs his head on the side of the crib. Some nights it’s as simple as soothing him with a touch —a gentle rub on his back, a firm pressure over the right side of his head.

Usually, he will settle fairly quickly and hover at the edge of sleep, held there by the warmth of my hand. If I move too soon, the spell is broken and he startles, frantically clutching at my arm, imploring me to stay. Knowing how little he asks of me, I settle in like the sentinel I am, keeping the discomfort at bay with the only weapon I have —my unflinching, consuming love for him.

I enter the room to find Nik sitting, propped up by the side of the crib. His cries sound the same but his rocking —his punching himself as he seesaws back and forth alternately slamming first his forehead then the back of his head against the crib —is different. In the dim glow of the nightlight, I can see the splash of tears on his cheeks, the dark splotches on the sheet where fat, hot, frantic tears have cascaded down in the darkness.

“Mama’s here, baby. Mama’s here. Shhh, it’s ok, lovey. Mommy’s going to make it better.” My throat constricts as I choke back my own hot tears. He needs my strength right now; there will be time for me to cry later. I quickly unzip the crib tent and lower the side, reaching in to pull his little boy form into my arms. He sits with his back against my chest, the lowered wall of the crib between us. I wrap my arms around him and press my head against his.

His head continues to rock forward and back as if he’s seeking some sort of release or some sensory input that will change whatever uncomfortable sensations he is having. I feel the heaviness of his skull as it thumps against my chest. I whisper soft words to him, hoping they bring him ease. The rocking begins to slow as I gently start to sway side to side with him. He squeezes his delicate hands together —“Help me, Mama,” they say to me. It’s a gesture we’ve recently begun to use when he asks for help during play as well. I am momentarily stunned at his presence of mind and ability to retrieve this particular gesture just now.

“Show Mama what hurts, baby. Let me help you,” I croon softly against his hair. My own fat, hot, anxious tears flow now; I cannot hold them in. He puts my hand on his forehead and presses. Instinctively, I begin to rub back and forth in the same gentle motion I used when he was just a slip of a scrap of a baby in the hospital. I would sit for hours, gently stroking across his forehead —willing him to feel the love and strength in my fingertips. Nik sighs and settles against me, his wiry form relaxing in my embrace, head nodding forward —toward the precipice of sleep.

These are the moments I wish he were a tiny baby again so I could scoop him into my arms and shelter him against my bosom. I’d breathe in the softness of his skin and the gold in his hair. My whole body would drink him in and fill him with healing light and strength. I would rock him into restful ease. Instead, I can only will all those things to flow through my arms and my fingertips, hoping he feels it just the same.

Nik slumps against my arm. As I gently lay him down, he startles; reflexively, he reaches for my hand. “Shh, I’m right here, angel. Mama’s right here. I won’t leave yet, I promise.” He curls his long limbs into a tight little ball —one hand tucked between his knees and the other laying upturned next to his cheek. He accepts my hand into his soft, spindly grasp. My thumb rests against his cheek as he snuffles and begins to settle. I can feel the moment when he slips gently over the edge of consciousness.

His deep, even breaths tell me he is at peace —for now. I gently lift the side of the crib and secure the tent before returning to the warmth of my bed. Settling in next to my slumbering husband, I am unable to go back to sleep right away. One thought keeps echoing in my brain: “He asks so little.”

All he wants is the simple, soothing touch of my hand in the fitful, frightful darkness. I want to give him more; I want to make the need go away. I need to make the need go away.

I cannot rest until I do.

***********************************

Wipe those tears away from your eyes
Just take my hand you don’t have to cry it’ll be alright
I’ll make it alright
Don’t let the world get you down
Reach for the love that’s all around
It’ll be alright baby we’ll make it alright

I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong
Cause it’s alright, yeah it’s alright let me
make it alright, make it alright

Stay with me tonight, stay with me tonight
Sometimes the words well their just not enough
Afraid of feeling and in need of love
To make it alright, baby, I’ll make it alright
Where will you run to where will you hide
I know the pain comes from deep down inside but
it’ll be alright baby we’ll make it alright Baby
Let me make it alright, Make it alright
Let me make it alright, Make it alright

Stay with me tonight, stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
I’ll pick you up when you’re feeling down
I’ll put your feet back on solid ground
I’ll pick you up and I’ll make you strong
I’ll make you feel like you still belong

Cause it’s alright, yeah it’s alright let me
make it alright, make it alright
Stay with me tonight, stay with me tonight

It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight
It’s alright, yeah it’s alright
It’s alright, yeah it’s alright
It’s alright, Stay with me tonight.

Alright by Reamonn

Read Full Post »

The lovely Deborah from 5 Minutes for Special Needs interviewed me recently. You can read all about me over here!

Happy February!

Read Full Post »


For more information about these teaching materials:

The Fisher Price Fun2Learn Workbooks & Flash Cards are discontinued; I found them at Atlantic Books in my town. I think they’ve been replaced by the Fisher Price “Little People” line of products which are sold separately.

Read Full Post »

My eyes are still blurry as I pour my first cup of tea. We’ve been up for a while now —a slightly bumpy start to the day but an otherwise good night. I’ve already changed and dressed Nik, given him his morning medicine, and sent his father off to school in the falling snow. Nik plays happily with his toys in the adjacent room.

I take my first blessed sip of chai. Then I hear it—

The familiar scraping sound of an empty plastic toy bin being dragged across the room, followed by a slight giggle. “Ng, Ng, Ng”* says a small sing-songy voice with a hint of knowing. It is followed by the sound of a small, sneakered foot stepping onto the overturned toy bin.

I’m prepared for it but the sound of puzzle pieces clattering on the floor startles me momentarily. Proud little boy giggles follow.

It’s a tough call; should I admonish him for his climbing or be proud of his accomplishment? Choosing pride, I smile into my steaming mug of chai.

************************************
* Translation: “No, no, no!”

Read Full Post »

Read Full Post »

« Newer Posts - Older Posts »