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Posts Tagged ‘regression’

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.

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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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GPS Constellation

GPS Constellation

I’d like to be able to report that things have miraculously turned around and that Nik is sleeping through the night. Alas, I made a promise to myself not to stretch the truth that far. Sleeping through the night seems to have become a distant memory for Nik and me; each night he drifts off to sleep fairly peacefully and each night he wakes screaming in pain or distress in the early morning hours. Sometimes it happens more than once a night; sometimes he is awake for just a few minutes and others he is awake for hours. The only commonality we can find, so far, is that there seems to be a pain trigger.

We still don’t know if the pain is the result of Nik’s very different intestinal anatomy —the combination of his congenital malrotation and it’s surgical repair —in the sense of the layout altering the functioning of his bowels, or if the functioning of his bowels is being affected by external forces such as diet, stress, infection, disease, etc. The net result is the same: Nik’s bowels have stopped functioning normally and now need assistance to keep moving.

If that were the only issue, I think we could deal with that. However, whatever is at work causes him such discomfort that he now wakes screaming. The pain seems to trigger an adrenaline response —you know, “fight or flight”— which, in turn, actually slows the intestines further. When the body is in that state of arousal, blood flow is diverted to more critical functions than digestion. I can’t prove it but I wonder if Nik’s constant state of “fight” over the past few years has contributed to the development of the paralytic ileus which recently landed him in the hospital.

Which leads me to another pondering: Is there a reason why Nik produces so much adrenaline? Is there an endocrine dysfunction (that is one area that’s never been checked out)? Could allergies be causing this response? No matter what the cause is, Niksdad and I need to find some way to help Nik get it under control. If we don’t, the potential exists that he could do more serious harm to himself when he’s in the midst of these “panic” episodes.

Since we came home from the hospital, Nik’s ability to cope with the slightest of changes has been practically nonexistent. His knee-jerk response to anything frustrating, painful, unexpected, or upsetting is to revert to punching himself in the face as hard as he can or kicking himself in the shins. You’d be amazed at the marks he’s left on himself. I won’t post pictures because that would be disrespectful of Nik. But I can tell you that the bruises and marks are so bad that both my husband and I have serious fears that someone will see us out in public with Nik and call the police because they think we are abusing him.

I have to tell myself that this is a temporary situation. That Nik’s reserves were so badly depleted by the physical toll of his hospitalization and by the energy it took for him to stay present during that entire ordeal. And he really did stay present. I witnessed some serious behavioral regressions during the week in the hospital —not jus the SIB’s but the need to bite and mouth things in ways he hasn’t in a long time, the need for specific toys or a specific video to play over and over. He even reverted to chewing on my watch for comfort and now refuses his chewy tube —until recently his favored chewing item.

Nik got himself so worked up in the hospital that he could not fall asleep unless I was actually lying in bed with him. Once he fell asleep, I would delicately extract myself and try to catch up on emails or simply walk around a bit to stretch my legs. Inevitably, he would wake in the night and get hysterical unless my body was right next to his. That struck me as the most notable behavioral anomaly; since he came home from the hospital at the age of seven months, Nik has never slept anywhere except in his own room in his own crib. The only time he’s ever slept on or with me was when he was still an infant and would fall asleep after a bottle or a tube feeding. That, to me, was a sign of how stressed Nik was.

Since we’ve been home, Nik’s readjusted a bit to his old sleep habits. The first night he needed me to sit with him —one hand on his head, the other on his back since I couldn’t fit in his crib— while he mouthed my watch until he fell asleep. Then, it was just the hand on the head and the watch. Then, the watch alone. The past two nights, he’s been able to go to sleep fairly easily without my presence and without my watch. He’ll take it at first, mouth it once then he gives it back to me.

I know that the more we return to his normal routine the easier his days —and nights, I hope —will become. The transition is just as difficult for us as it is for him. And yet, through all of the behavior regression and the stress, through all the turmoil and disruption to his routine, Nik has continued to make progress in other areas.

While we were in the hospital, Nik learned how to sign “Yes”and understands how to use it. That alone has been a lengthy journey for us. Now, Nik can answer with a sign when I ask “Do you have an owie in your head/tummy/wherever?”It has opened up a whole new realm of communication for us and may be able to help us learn more about what Nik feels and sees and hears —literally. I’ll be curious to see if we can use this new communication skill when we see the eye doctor on Thursday; we may actually be able to get a better sense of his visual acuity.

And eating. I guess his forced regimen of no food intake for the first few days in the hospital really made an imprint on Nik. We had already been cautious about what we let him have prior to going to the hospital; we knew something was brewing and didn’t want to muddy the diagnostic waters at all. The result has been nothing short of amazing.

Nik has begun to tolerate more textures and to feed himself bits of things like goldfish or graham crackers. He’s mastered the art of eating with a fork or spoon almost by osmosis. And he now sits at the dining room table with us and demands exactly what we have on our plates —on his own plate!

Yesterday, for the first time ever, Nik even took a tentative bite out of a soft cookie during snack time at play group! I know this because I felt his teeth brushing against my fingertips as I held the cookie.

I guess you could say that some things are pretty much status quo and others are barreling ahead. Is it any wonder then that I am constantly feeling that the foundation beneath my feet is unsteady? It seems, lately, I’m not quite certain what to expect and the changeability is tiring.

And yet, oddly enough, I remain highly optimistic that there are answers to be found, ground to be regained, and new frontiers to forge.

I just wish I could remember where I put my map.

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For information about Geocaching, click here.

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