Posts Tagged ‘support’

You may have noticed that my writing has fallen off here. Quite a bit. Yeah, I know, I know. I don’t need to beat myself up about it, it’s my blog, blah, blah, blah.  The truth is, I haven’t been writing because I haven’t known how—or what—to share about the changes happening with my son. The words are jammed up inside my head, warring with the feelings inside my heart. I have discarded multiple drafts in an effort to find the words I need. I wrestle with what I want to say and how much I feel comfortable sharing. I still don’t have the answer; I am outside my comfort zone.

The irony is not lost on me.  Ever the consummate over-sharer— not afraid to tell my story to anyone who will listen, I have struggled with what to reveal. I’ve been grappling with finding my own truth and having to confront my own biases all while trying to find a new equilibrium. I have been forced to examine and to reframe my vision for the life I thought we would have.

The life I thought he would have.

It’s very much a work in progress as we continue to redefine, reshape and work our way through the morass of emotions and information.


When my son was born extremely prematurely, he was substantially smaller than his gestational age and had a number of identifiable health conditions in need of immediate treatment –either with medications or surgeries. Life—mine and his—became about surviving another day, making it through another crisis.

Over the course of his 209-day hospital stay, and even after he came home, the focus was on making it through; through another season, another health crisis—whatever curve-ball life threw our way.  At that point in time, there was no way to predict how the cards would fall and no way of knowing what his future might hold.  Many professionals told us there were still so few children like ours who were old enough to really have enough data to be able to predict with any degree of certainty. So, we simply hunkered down and did the best we knew how to do with the minimum of supports we had. All we knew was that we were not quite out of the woods but not quite fully in them.

“When we let go of hope fear wins.”

Through the years, there have been so many well-intentioned people –from health care professionals to total strangers—who confidently told us not to worry, our son would surely catch up. They patted our shoulders in sympathetic displays and told us stories of their cousin’s friend’s uncle’s daughter or their neighbor’s son who were “born early, too; they caught up by the time they were in elementary school.”

When you don’t know what you don’t know and the prospect of knowing certain things is, well, scary, it’s all too easy to want to believe the well-wishers and the miracle-sellers who predict your child’s miraculous growth and feats of development. So, you put on the blinders and tuck your chin down and simply soldier on—hoping for and working toward the best, whatever that turns out to be. In the absence of even a hint at the longer view, we simply clung to hope and pushed our worries aside, taking it a day at a time, an issue at a time.

When our son was ultimately diagnosed with PDD-NOS, it gave us something to hold on to and provided a new context through which to view everything else. As time progressed and some of the more emergent health issues began to resolve or remained stable, we hit a kind of developmental sweet-spot.  Our son began to make tremendous progress and was rapidly gaining many skills which had been so severely delayed. In a seemingly short time, he blossomed from the child who couldn’t even sit up or roll over and who relied on a tube for all his nutrition, to a child who could walk and run, climb and eat, and who had taught himself letters and was showing signs of spelling and early reading skills emerging.

With that swelling surge of hope, we began to really push for supports and look for signs of academic progress.  Some early literacy skills were emerging, multiple word sentences constructed on his speech device – there were glimpses; glimmers of dazzling progress.

Until there weren’t.

Which is where we have been for a while now. I’ve struggled to understand for myself and to try to articulate for others, the degree to which things have stagnated; there’s been some significant regression in some areas. It’s best summed up in a brief conversation I had with our developmental pediatrician this week.

ME: So, if I have three different evaluations, done by two different entities over a two-and-a-half year period – and not shared between each other—and they all show pretty much the same thing, including almost no change over time…

Can I pretty much assume that (1) my son doesn’t test well and the tests aren’t completely accurate and (2) that there’s probably *some* kernel of accuracy there which speaks to a larger issue? The one we think we are seeing?

DR: (wrinkling her nose in a sympathetic grimace, nods her head) Yeah, I would make that leap. Let’s make an appointment to talk about it and find a new way forward.

Hope is important; it is vital. But so is the ability to see beyond the heart’s desires, to peel back the thin veil over your fears and really look at what is in front of you. I’ve been in that process for a while now –none of this is new data; it’s just data my husband and I have finally been ready to see in a different light.  The process of getting to this point has been emotionally messy. It’s been painful to confront our own prejudices.

For years we have both felt like we were sort of straddling two different disability worlds and not feeling like we solidly belonged in either one. Was our inability to settle in, to identify with any one group, born of denial and shame? Why is it so much easier for me to say, publicly, that my child has “mild cerebral palsy and autism” yet I cannot bring myself to declare just as casually that he is intellectually disabled—mentally retarded?  (Yes, I know the term really isn’t used anymore; that’s my point—I’m calling myself out on my own biases and misperceptions.)

Different words will not change my beautiful, smart, funny, loving child. Nothing will.  And yet, the truth of those same words cuts me to the bone, laying bare the fears and grief I’ve held at bay for most of my son’s life; I am the one it changes. I am the one those words challenge.

I hope I am able to meet it with half the grace, determination and heart with which my son has lived his entire life.

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Apologies if this post is a tad disjointed (and poorly written); the cumulative effects of chronic sleep deprivation seem to be kicking in a little quicker each day.

Nothing’s changed.  Nik’s still in pain and the episodes are increasing in frequency, duration and intensity.  The toll on our family is becoming too great to wait out the dietary changes.  Frankly, I’m not entirely convinced that’s the root of the problem anyway.

Before all the bio-med supporters go getting up in arms, let me clarify.  I do think that Nik will derive benefit from the GFCF diet but I do not think those benefits have anything to do with his autism.  I’ve gotten lots of kind, caring and very well intentioned emails and messages —all of which I appreciate—about articles and plans and protocols that will help “heal Nik’s gut.”  The gut isn’t the problem here.

Nik’s gastrointestinal issues do not stem from food allergies.  They do not stem from leaky gut or malabsorption or anything else because of his atypical neurology.  They are the result of his anatomical differences —his intestinal malrotation and resulting short gut.  He also has little to no transverse colon.  He does not have chronic diarrhea or chronic constipation; in fact, his bowels are pretty darn good on most days, thank you very much.  He does not have horrible stomach pains or painful reflux that we can tell; believe me, he did at one time so we can tell the difference.  In fact, his recent endoscopy in February was so beautiful many of the doctors were envious. 

What Nik does have is some sort of horrible headpain.  We now know it’s been going on for nearly two years and he has been trying his damnedest to tell us.  That’s not to say we haven’t been listening; more that we haven’t been understandingthe message.   True to form, Nik continues to crank up the volume (by increasing the severity of things) until we catch on.

We’ve spent the last two years trying to investigate every possible avenue from GI to ENT.  We even stopped his seizure medications in September because he’d been seizure free since March of 2008 and his last EEG looked great.  That one change gave us a short break from the nighttime wakings and distress for a few months.

It also gave us a false perception that this latest pain was something new and different.It was that perception which led us down the path of diet and ruling out food allergies.  [For the record, Nik’s formula —available only by prescription— is already GF, does not contain soy, does contain somecasein and is entirely food-based.  Thus far, any efforts to find a truly GFCF enteral formula has been unsuccessful so we’re giving Nik some enzymes and lactobacillus/acidophilus types of supports.]

Things have gotten to the point that Nik, bless his strong little heart and spirit, is so worn out by his own lack of sleep and his own discomfort that he’s barely functional by dinner time.  Sure, he’s present and he’s entertaining —just as long as you don’t expect anything from him like focus, communication, learning. 

Even the quality of his sleep, when he gets it, is different now; he no longer drifts off to sleep looking peaceful and content.  Now, he simply passes out in whatever position he lands in, his smooth forehead creased and furrowed as if he’s fallen asleep in the middle of some deep thought.

Thus far, no medication we have on hand helps him sleep through the night more than one night in a row.  He either doesn’t respond to it in a typical fashion (highly possible with Nik) or it’s simply not the right thing and isn’t working on the right mechanism.  The end result is the same —another night’s fractured sleep filled with screaming, face pummeling pain.

(Sometimes the face getting pummeled is actually mine if I’m not quick enough to dodge when Nik starts rearing in pain.  I’ve gotten clocked in the face a few times.  Ouch.)

I’ve fought the good fight and am not giving up on finding answers for Nik; if there’s one to be found I will not rest until we find it.  Ah, but now we come to the crux of the matter —rest.  The toll exacted on our entire family is simply becoming too great; it’s long since crossed the line from highly inconvenient to flat out dangerous

One of these days Nik will either hurt himself badly or hurt me; my husband and I are practically sleeping in separate shifts and his school work is starting to suffer because of all the additional worrying he’s doing about both Nik and me.  I look and feel awful and I no longer even care about it —I’m just too tired to care anymore.  It hasn’t happened but I fear the day when my frayed nerves snap and I end up doing something I would regret.  Nothing abusive or horrible like that —I would walk out the door first and call my mother to go watch Nik— but behavior I would not be proud of having my son witness.

We have become a family on the verge of a crisis.

I placed an emergency call to our neurologist on Monday.  We saw him Tuesday morning and discussed the situation.  He is of the opinion that much of what Nik is experiencing is “typical behaviors seen in children with significant developmental delays or autism.”  He wants us to try increasing Nik’s melatonin at bedtime and giving him a larger dose of Atarax —roughly a fifty percent increase over what we’ve already tried though certainly still within normal prescribing guidelines.  The plan is to try this for two weeks and see how it works.  If it doesn’twork, then he wants to talk about a trial of Risperdal at a low dose. 

I hate the idea of trying the Risperdal; I can’t put my finger on why, exactly, just that it doesn’t feel right (and I’ve learned over time to trust my instincts).  On the one hand the doctor is saying he’s reluctant to label Nik as autistic (“He’s so interactive and social with you”) —though three previous doctors have had no trouble with labels from PDD-NOS to atypical autism.  Yet, on the other hand, he is suggesting that Nik’s issues are potentially best treated with a drug used for many autistic people.  (Yes, I know, it’s not only used for autistics.  However, in the context of our conversations with this doctor, the point was made clear.)  To hedge his bets, he’s also referred Nik for a full autism evaluation by the Developmental Pediatrics group at our home-away-from home much frequented pediatric hospital.  Nik does, after all, meet many of the diagnositc criteria for ASD.

But, here’s the thing: I still believe with all my being that what Nik is experiencing is genuine, acute, physical pain.  In his head.  Migraine or cluster headaches, perhaps?  The pain certainly seems strong and debilitating when it strikes —enough so that it has woken him from a heavily drugged sleep on many nights including the last two —nights when we’ve increased the Atarax by more than fifty percent. 

My son has had a lifetime of unnatural things pumped into his little body; it’s what was necessary to keep him alive when he arrived far too early and far too undeveloped to face this world.  Little by little he’s divested himself of the need for most of his medications and it pains me to start on what feels like a potentially slippery slope of medications and side effects.  If we’re going to start down that path, I want to start with a few more systemically benign medications, you know?

I’ve put another call in to the neurologist to discuss a change in tactic.  (I’m waiting for a call back, probably tomorrow.)  Already, the side effects from just two nights of the new “plan” are evident and I don’t like them.  Nik is groggy and cranky, off-kilter and easily distressed.  His appetite is greatly diminished and his ability to focus on a meal long enough to finish it is dicey at best.  I’ve not been able to leave him alone for longer than ten minutes at a time because his threshhold for frustration is so low and his initial response right now is self-injurious; I have to be nearby to redirect him.

Ironic, isn’t it, that the medications we thought might decreasehis “behaviors” are making them worse?  That also fuels my belief that the current approach is not the right one.  I feel strongly that we need to try treating Nik with migraine medication for a bit before we skip right to the antipsychotics.


Meanwhile, expect my web presence to be sketchy and sort of hit-and-run.  I can’t possibly disconnect completely; you, my cyber friends, are part of my lifeline.  My web of support which holds me up when I am too exhausted and emotional to think straight.  You stretch out your hands to the ether and hold me up with your words of support, your posts of hope, your shared videos that make me laugh and cry.  You help me release the feelings I don’t have the energy to express with my own words. 

You are my drug of choice. *grin*

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push_me_pull_you_llamaIt’s been a seriously rough patch over here at Nik’s house — a very, very, very rough time here.  I don’t think that is understating things at all. 


We’ve been battling against the mysterious pains for so long now that they are starting to feel like a part of the family —kind of like bad in-laws that came to visit and ended up moving in.  Then we had the detour to the hospital for Nik’s ileus.  Now we’re trying to figure out whether his new found obsession with love of eating is compounding things with the possible advent of food allergies and maybe even celiac disease. 


We’ve gone from sleeping peacefully on most nights to not sleeping at all many most every night.  The bruises on Nik’s poor little face and legs (he kicks himself in the right shin with his left heel) are so bad that it makes me cry and makes my husband feel ill.  Just when one set starts to develop the soft blend of yellows, greens and purples, Nik gives himself some new ones to overlap in angry shades of blackish-purple.  They are all very distinct in size and shape; I can pretty much map out which knuckles hit where from the patterns on his face. 


Nik’s suddenly decided that going anywhere with his Daddy is only okay as long as I am there, too.  The mere idea of getting into the car without me sends rivers of tears coursing down Nik’s cheeks and he begins a plaintive chorus of “Ma-ma-ma-ma!” —complete with outstretched arms and clutching at my shirt when I lean in to kiss him goodbye.  My radar is pinging frantically as I try to figure out a possible cause for this new behavior.  His father and I know it is a communication but we are unable to figure out the underlying message so we simply muddle through.


It seems that just as things settle a bit and we feel a little easier —Bam! —the other shoe drops and we’re back in the fray.  I hesitate to write much these days because things change so quickly that I can’t keep up; I feel like I am writing fiction when I’m trying relate  all the good things that have just happened and Nik is in the midst of blackening his own eye as I write or we’ve had seven consecutive nights of no sleep.  I guess you could say I am experiencing a bit of cognitive dissonance in the process. 


Somehow, even in the midst of the worst days, there are tiny glimmers of hope shining through.


Nik’s desire and ability to eat have absolutely skyrocketed!  We were finally able to get his blood allergy testing done last Saturday and began giving Nik Allegra to help minimize any symptoms.  [side note: It’s not having any apparent impact on the accompanying symptoms.]  Since then, we’ve pretty much let Nik eat whatever he wants; within the span of one week, Nik’s gone from eating a mere five percent by mouth to inhaling consuming more than fifty percent of his daily nutrition orally. FIFTY PERCENT!


It’s not just the increase in quantity either; that alone would make us very happy.  No, Nik has simply decided: it’s time and he knows how to eat.  With a fork and spoon.  Finger foods.  Textures.  He’s teaching and challenging himself as he goes; we have not tried some of these things with him before and yet he has mastered them.  It still boggles my mind.


One of the nice things about Niksdad losing his job recently is that he is now home on weekends and we have opportunities for some wonderful family time.  We had brunch at my parent’s house on Sunday.  Nik decided that would be a great day to show off his eating prowess for his grandparents. 


 As I was setting up his booster seat —and apparently taking too long to suit him—Nik launched himself head first into one of the cushy arm chairs at the table (we were dining on my parents closed-in porch with their generously proportioned patio furniture).  Rather than try to wrangle him while I was fixing his booster, I simply handed him one of his cooked pancakes.  Really, I just assumed he would lick it and tear it into pieces that would end up either on the floor or the table to be cleaned up by the cat after we had gone.  You can imagine my surprise and utter delight when he tore off a piece and stuffed it directly into his mouth! 


I still get kind of choked up thinking about it; it’s been a long, hard journey to get here.


 I thought the “pancake incident” was the pinnacle; it was just the beginning.  During the course of the past few days —in spite of his horrible nocturnal (and now occasional day time) episodes of pain —Nik has surprised us by feeding himself without any assistance on more than one occasion.  It’s not perfect —and it’s certainly not neat —but the confidence he exhibits and the gusto with which he eats is nothing short of amazing.  And his palate seems to be limited only by the textures of the food; he’s actually managed to bite into a piece of dry cereal without prompting —or freaking out!


Believe me when I say this odd juxtaposition of tremendous breakthroughs coupled with the debilitating pain is keeping us all more than a little off balance.  Just when I think I can’t take anymore, something happens to slow the pace a bit. Or, as was the case last weekend, something so wonderful happens that it helps restore some perspective and provides a boost of energy needed to keep going.


My wonderful friends —and I do consider them friends though we’ve not (yet) met face to face —sent me the most perfectly timed and thoughtful gift.  I still cry when I re-read the note.  With this amazing gift I have started to allow myself to think about doing things or having things I wouldn’t otherwise allow myself to.; I’ve gotten so good at sacrificing my needs for my family’s needs.  I don’t mean that in a martyred, feel-sorry-for me sort of way.  It’s just what happens when you are the full time caregiver for a child with as many challenges as Nik has had in his short life.  My friends, you totally get it and I love you for that.  I am so grateful for the words of love and support and for the desire you had to reach out and remind me that we’re all in this together.


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