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Archive for the ‘exhaustion’ Category

What counts is not necessarily the size of the dog in the fight – it’s the size of the fight in the dog. ~ Dwight D. Eisenhower

As we’re weaning Nik off of naps and one of his meds, he definitely gets more tired by the end of the day. I suspect it’s a combination of increased energy and alertness which leads to greater physical activity—which I didn’t think was even possible for this kid —and greater sensory input to try to process; the result is that Nik is exhausted at the end of the day.

Today is no different.

His slender frame encased in his “footie” pajamas —the sight makes me smile as it’s the last vestige of any sign of baby about this boy —Nik chirps and sings as he toddles on wobbly legs toward the stairs. He is so tired he nearly runs into the kitchen cabinet en route.

He spies one of the cats lounging on the back of an armchair but is too tired to give chase; he acknowledges the cat with a sing-songy “mah-mah-mah,” his way of saying “meow,” as he pinches and pulls his cheeks to make the sign for cat. He continues in a zigzag line to the foot of the stairs; his feet are barely able to propel him forward. “I think you’d better carry him, honey,” I say to Niksdad.

Unassisted, Nik begins his laborious ascent. On most days, he holds the railing and walks up with great confidence and speed; tonight, he crawls on his hands and knees like a thirsty man approaching a desert oasis. He pauses about midway; sitting back on his foot, he nearly tumbles but Niksdad is there to steady him. “Nikolas, do you want Daddy to carry you?” my husband asks.

Nik pauses and turns his body toward us; I expect him to reach for his father. Instead, he turns brusquely away. His determination makes me smile. Nik refuses to ask for help except in the direst of circumstances; this, clearly, does not qualify. He continues to crawl; his progress is much slower than before. He pauses to rest his forehead on each step before he climbs —as if he is gathering strength for his arduous task. You would think he is Sisyphus, pushing the boulder uphill, he is working so hard and is so determined!

Reaching the top step at last, Nik staggers into his bedroom and heads right to his crib. I am certain he will ask for help in getting into bed; he is so tired I cannot fathom that he has the stamina to do it in the usual fashion**.

Apparently, I am mistaken yet again. Determination thy name is Nikolas.

** Video of “the usual fashion” as of approximately three weeks ago:

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It is difficult for me to write these days; I struggle to find both the time and the words to express all that is going on. Rather than giving snippets out of context, I simply don’t write. And yet, I feel like I have left people hanging, wondering what else is going on, why I am so quiet lately.

This post is a pretty accurate depiction of events which are now occurring multiple times daily; Nik’s mysterious pain episodes seem to be changing, taking on a demeanor that, frankly, I don’t like. The frequency has diminished, that’s true, but the duration and intensity have both been ratcheted up significantly. And the aftermath —the cursed aftermath —now leaves Nik limp and lethargic for a while. Whereas he used to simply shrug it off and bounce right back, Nik now needs a good twenty minutes or so of very quiet, low-key activity before he can resume his normal hijinks.

[NB: We have an appointment with the neurologist tomorrow morning to discuss this again. Also, we have finally gotten our pediatrician to order a CT scan and numerous blood tests to rule out any number of possible —but “statistically unlikely”— causes for these awful episodes.]

The disturbed sleep patterns also continue; their frequency seems to escalate as the intensity of the daytime episodes increases. As I joked with my mother on the phone today, Nik and I are both sporting such dark circles under our eyes that it’s in danger of becoming a permanent family characteristic. I joke, I laugh and make light because it is how I have dealt with such things most of my life.

I don’t have to tell you how I truly feel; if you have read my blog for even a short while —and if you have children of your own, be they with or without special challenges or circumstances —you know the pain and frustration I am feeling. So, instead of dwelling on it, I choose to shine the spotlight on the positive and wonderful things that are happening with Nik. That, too, is my coping mechanism —deflecting the attention away from the things I don’t want to think about or deal with. But know that for every wonderful, glowing post I write —about Nik’s learning a new sign, making some tremendous cognitive or social/emotional connection, or some funny thing he’s done recently —there are just as many I could write about the sleepless nights, the pain of not being able to help my child, or my utter frustration with a medical system which places disparate faith in a parent’s intuition, insights, and observations.

Sometimes, when I feel too full of the emotions, too raw from the continuum of pain-filled days, sometimes I can find the words to share it and I do. In the sharing of my pain, my burden is temporarily eased; I can feel the weight shifting onto the shoulders or into the outstretched hands of my sisters —and brothers— on this shared yet unique journey. When I have regained my strength and my perspective —my pluck—I reach out my hands to hold you, in turn.

Lately, I have felt like a bad blogging friend; my thoughts are often scattered as I read a post so I bookmark it to go back to and then forget to do so for days on end. I’ve been remiss in following up on comments left on my blog or memes and awards. It’s not that I don’t care, truly! It’s just that these latest weeks of escalation have just kicked my ass around the block and back again. So, I beg of you dear friends, don’t let go of that lifeline you’ve been holding for me. I’m struggling and may be down, but I’m not entirely out…and I’ll be back.

Maybe even tomorrow?

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Wow, what a day it’s been! Lots of good and some bad all stirred together in a pot.

Up at the crack of o’dark hundred to meet my sister at the gym. Like a nervous traveler afraid to miss the flight, I woke an hour before my alarm. Um, that would be 3:30 this morning. UGH.

I’ve not been able to watch Autism: The Musical for a variety of reasons. When I tried the link today, while Nik was in for a nap, all I got was the #$^%$ preview video. ARGH!

Thank goodness for KC’s mom, Tina! She posted a direct link in her blog today and I just finished watching the movie!

I am am exhausted, weepy, moved beyond belief…and going to bed now. Will write more tomorrow.

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And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.

Help me if you can, I’m feeling down
And I do appreciate you being around.
Help me get my feet back on the ground,
Won’t you please, please help me?

John Lennon/Paul McCartney

There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.

Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mystery ailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.

When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.

Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.

Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.

So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotional music so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?

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Life isn’t about waiting for the storm to end;
It’s about learning to dance in the rain.

Jennifer over at Pinwheels commented by email on my last post (the fun video post, not the pathetic self-indulgent post) that “it’s just as it should be…sunlight always comes after the storm.” So why do I constantly feel like I am searching for the rainbows and somehow missing them? I mean, it rains then it shines and it rains again. Then the sun peeks out and the clouds roll in and …crazy emotional weather in my world these days!

Long story short, the “affliction” I mentioned before continues to rear its ugly head. Nik’s fever continues; he woke with a temp of 100.5 at 4:45 this morning. And today it was the fabulous Miss D (our favorite OT) who was treated to Nik’s frightening manifestation of mysterious pain. One moment he was playing happily with a shape sorter, the next minute he was screaming and writhing on the floor in abject distress. NOT behavioral.

This happened a few times toward the end of our session and right before our weekly playgroup. While Miss D and Miss T set up for the group, Nik played independently for a bit, happily pulling balls from the ball pit and tossing them. He’d toddle off to chase the balls and the return them to the pit, laughing hysterically the whole time.

Except for the time he tripped and slammed face first to the floor.

Needless to say, the morning was no longer much fun for either of us. My poor battered baby sobbed and wailed in my arms, bleeding from his mouth. My throat felt like a boa constrictor’s prey as I fought back my own tears and tried to calm Nik enough to verify that his teeth were in tact. Thank God for small mercies. He does, however, have bruises from his chin all the way up the center of his face to the bridge of his nose. They are a nice complement to the ones on each side of his forehead from banging his head against the sides of the crib each night.

You know it’s bad when you have the pediatrician on speed dial on your cell phone. Off we went for the fourth visit in as many weeks. The prize for using our frequent visitor points? More antibiotics for the dual ear infections, the second round in a month. Sigh…

Well, at least it explains the nocturnal waking, the low-grade fever that wouldn’t quit, and the screaming head-banging…for now. Until we see the ENT tomorrow and are told “No, he doesn’t have an infection; those pediatricians always jump the gun.” I kid you not, we’ve been told that before. But the good news is that the immunologist moved Nik’s appointment up to this Friday and has ordered some blood work. Well, the appointment is good. Bloodwork? Not so much.

And yet, through it all we keep finding the tiny pockets of joy (like Susan mentions here) and savor them like forbidden sweets filched from Grandma’s candy dish when the adults weren’t looking. They are all the richer for their hard-earned and unexpected sweetness.

And, truth, in poetic irony…it has indeed started to rain tonight. The thunder is booming in the distance and the rain has just started to pelt down on the skylights. (I love a good storm!)

Perhaps tomorrow will bring the rainbow after all.

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You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…

Rascal Flatts

It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)

On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…

I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.

This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.

Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.

Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!

I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.

I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?

I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.

On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.

Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?

Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.

Even this doesn’t seem to help me today. Sigh…

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It’s over. Done. Chapter ended, book closed; we’re moving on. Tonight, with Niksdad literally helping me to hit the SEND button on the email, we withdrew Nik from school…and not for the medical reasons we thought we were going to use.

I was on my way to school with Nik this morning after his feeding therapy at Easter Seals; I happened to run into our advocate who was on her way in for a meeting of a special council for children with disabilities. She asked me to join the meeting and I said I couldn’t; I had to get Nik to school. She gave me the “hairy eyeball” and asked whether we had or had not decided to take Nik out of school.

Long story short, Nik and I stayed for the meeting.

When I came home and got Nik settled in for lunch and his nap, I called the Community Legal Aid Society; they have a special Disability Law Project group that handles all sorts of things including FAPE and insurance issues. They took my information and someone will review it and call me back. As I hung up the phone, I cried. Frustration and exhaustion hitting me all at once; I feel weary before the battle even begins. It shouldn’t have to be this hard.

When Nik woke from his nap, we played and laughed and sang and tickled. We played together with his shape sorter for nearly 30 minutes —taking turns, picking out the shapes when I asked him to, finding the shapes of the same color. It wasn’t always consistent and perfect but there was clear cut intent and understanding —and enjoyment for both of us. Every once in a while Nik leaned into me making smacking sounds to give me kisses. He chose another toy and snuggled into my lap with it. It was the way I always dreamed it could be to spend time with my toddler. The way I knew it couldn’t be if we had to keep school in the picture. Regardless of Nik’s placement as “home instruction,” if we pulled Nik out of school for medical reasons, we would still have to fight all the same battles with school.

Niksdad and I talked it over at dinner and decided that we were going to take the chance and cut school out of the picture entirely. We may have to do some battles with Medicaid but we agree that it will be easier than dealing with the school district. And, in the (please, God!) unlikely event that Medicaid completely stops all services — well, we’ll just do the best we can until we find other solutions.

I am not going to lie and say I am 100% comfortable with that possibility; I am afraid that I might not have what it takes to give Nik what he truly needs in terms of education and development without the support of PT, OT and Speech therapies. It’s all we’ve ever known. But, I do know a lot of rehab professionals who would give me great resources to use and I am smart and willing to do anything to help my child. I guess that counts for more than I give myself credit for. And Niksdad and I agree that we don’t want to have to go through the hassles we would with school until Nik absolutely must be there.

We’ve even decided that we are not going to follow up on some of the procedural types of things (and there were many!) which school screwed up. We will make it known for the record that we do not agree with his IEP as it is written; hell, it’s not even complete. There are two full sections missing —his OT and Speech present levels, goals, and objectives aren’t even done. But, we will make damn sure that when we ride this merry-go-round again that we play their game from the get-go. We will insist on every prior written notice, every 10-day notice for meetings. We will record every meeting, do everything in writing, and sign nothing we don’t agree with. We will make sure that we know the laws better than they do and use them to our complete advantage. When Nik is five.

For now though, we’ve jumped even though we can’t quite see the net. It’s a funny thing, too, because between Niksdad and me, I am usually the one taking leaps of faith and dragging him along with me. But it feels right —and good— that as I leap, he is right there holding both my hands, looking into my eyes, and telling me “It’s going to be OK.”

He’s always right, you know.

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Of course, I should have mentioned that I *do* have a safety net for myself…all of my blogging friends who keep me sane, send cyber hugs when I’m down, and celebrate the good stuff. I couldn’t do it without you guys!

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Time check. 3:30 a.m. Nik’s been awake for an hour —alternately playing and crying in his crib. The kind of cries that let me know he is not in any real distress. Just enough to keep him awake —and me, too. Well, that and the toilet which has chosen tonight to run incessantly. My only secret, sadistic pleasure has been waking Niksdad to fix it. I have already thrust my hands into the tank to fix the valve no less than three attempts in 20 minutes only to crawl back in bed and hear the tank draining and refilling again. I am not sure which of Dante’s circles this is. Crying child, running toilet, and a spouse who can sleep through the arrival of the second coming!

Having been in Nik’s room once in the past hour to comfort and console —and provide a quiet toy to distract him from thoughts of climbing out of the crib —I am waiting this one out. I don’t know if it’s a change in barometric pressure, or what, but his ear is acting up again. Not in an ear-infection-kind-of-way; rather, more of the same indeterminate pressure which causes him to rub and flick at his ear and which brings him some sort of intermittent pain. There is swelling around the lymph glad and, so help me I am not crazy, around the mastoid. It comes and goes and never seems to be present when we are visiting one of the myriad doctors Nik sees. I guess the surgery wasn’t the magic answer we were looking for.

3:40a.m. I listen to my son’s cries escalate to a wail of pain and frustration (is he crying for both of us, I wonder), as I can do nothing to ease his discomfort. The toy has long lost its appeal and Nik is simply tired and in need of that elusive balm of sleep. I cannot even go in to console him and rub his back as I used to do. Now, he wants to stand up and cling to me, begging me to release him from the prison of his crib. I am no longer naïve and hopeful that he wants the comfort and safety of Mama’s embrace. Alas, he has grown wily and I have become jaded. Unless I am prepared to take him downstairs to start our day, I dare not lift him.

Instead, I sit here at my keyboard feeling supremely guilty and more than a little frustrated as I listen to the wailing and thrashing which signals his discomfort, his frustration. His utter exhaustion.

At 4:00 a.m. I cave. When I enter his room, he is happy to see me. I feel guilty for raising the false hope of release. He begins to clap my hands together —one of the ways he requests play time. Instead, I smooth his hair, rumpled from his rolling to and fro in the crib. I whisper gentle soothing words to encourage sleep and relaxation. Failure ensues.

As I leave his room, the wailing and thrashing begins anew, this time with the tenor of extreme frustration. I know that if I wait it out he will eventually fall back to sleep. If only I could do the same.

I look in on my husband. He is sleeping blissfully —ignorant of the drama playing out down the hall. The struggle of maternal instinct versus parental control. Sleep versus play. Damn those ears anyway. Nik’s for causing him such distress and disruption. Mine for being unable to ignore the primitive pleas of my child. My husband’s for being able to sleep through it all. I m not even sure he opened his eyes when he fixed the toilet!

Never before have love and resentment balanced on so fine a hair. I am torn between my need for sleep and caffeine. Two roads…which shall I choose? The choice truly can make all the difference in my day.

4:25 now. It sounds like Nik is settling back in. The wailing is reduced to quiet moans and sporadic whimpers. Quiet. Then the sound of music from his toy. Damn. The boy is so tired. I go in to take the toy away so he won’t roll over on it and activate it as he is drifting off to sleep. He sits up and leans his head against the side of the crib. I can see the shadowy outline of his little form begin to droop and slump as he fights the pull of slumber. “Please, God, let him sleep” I pray. I am so weary at this point; I want to climb into the crib myself. Caffeine is looking like the only way I will ever make it through this day.

4:35 —Is he out? Taking a leap of faith, I stagger the few feet down the hall toward my beckoning bed. Whimper. Moan. Wa-ai-ai-ai-il! Followed by more whimpers. Followed by whines. SHIT!

4:45 a.m. —Clutching the monitor in my hand, I stumble down stairs to start the coffee. The faint blue glow of the light on the coffee pot lures me like a siren. Looks like caffeine wins out after all. The monitor is eerily silent so I check the volume. He’s out. Asleep. Joyous reprieve!

Coffee forgotten, I stumble back upstairs and crawl into bed. I awaken briefly an hour later to tell Niksdad that he is to let Nik sleep until he wakes on his own and to wake me…well, never! He gently kisses my forehead as I drift off again. I awaken three hours later to find my son awake, dressed and fed, and fresh coffee in the pot.

I am in love once again.

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“I think we all feel like that, sometimes: forgetting that we have exactly what we need already within ourselves, if we can just believe in it.”

Those words, about courage, from Jennifer’s post today on Pinwheels really struck a chord with me tonight. It’s been a very trying few days here in NiksHouse. I feel like the dang centipede is tossing its shoes again. The up and down, back and forth of emotions and activities is exhausting. In spite of my working out regularly and trying to eat healthfully, I just feel like Dorothy must have felt in the poppy field. I simply want to lie down and sleep and let it all go on without me.

But I cannot. I guess that’s the cost of trying to be a good mother —no, of BEING a good mother. There isn’t much rest or respite and we have to take it where and when we can find it. I find mine online with you all. I’ve been jonesing to write for the past couple of days but haven’t been able to find the time. Now, it feels like I need to cram a lifetime into one post. Sigh… Did I mention that there are some incredible moms out there who simply must have ESP? I’ve gotten some wonderful emails from a few of you…just checking up on me. It means the world to me. More than you know right now. I may not answer each comment or email but PLEASE know that they have all touched me in the heart.

So I’ll start with the easy stuff first — Nik is having surgery Friday to remove the tube from his right ear. We have no idea if it will make any difference but we sure hope so! The episodes of rubbing and crying are increasing in frequency. Poor guy took THREE HOURS last night to cry himself to sleep. Nothing Niksdad or I did seemed to help at all. It was the tug-of-war with our hearts —the frantic cries and clutching at us for comfort, coupled with the pushing away because Nik was so tired and just wanted to sleep. Unfortunately, we couldn’t give him any Advil to help him make it through the night —too close to surgery. (Anti-inflammatories thin the blood…not good before surgery!)

We survived the bumpy night and made it through the way-longer-than-it-ever-should-have-been pre-op appointment today. Nik must have remembered last weeks’ EEG (I didn’t write about it…it was awful!) where he had to be strapped onto a papoose board and restrained for nearly an hour. (I cried when he finally passed out from exhaustion.) He had THREE major meltdowns in a two hour span while we were at the appointment today. Nothing I could do to help him except try to distract him from the nurses in their scrubs. Who knew “white coat syndrome” could start so young?

Back home for lunch, the rest of the day went great. Off to see Miss D and Miss T —our new favorite therapists. Nik is doing so much better and really making some wonderful progress. I could probably write several posts about that by itself. Suffice to say; lots of good things are happening in terms of his attention span, starting to play appropriately with some toys (instead of throwing everything), more social interactions, generally a bit calmer. You know, only Energizer Bunny to the 3rd degree or so.! Nik is communicating a bit more using some hand-over-hand gestures to put our hands where he wants them. For example, he is a smarty-pants and can buckle the lap belt on his chair, his stroller, you name it…but he cannot always open them. His new favorite game is “I buckle, Mommy unbuckles;” he clues me in to the fact it’s time to play by guiding my hands to the buckle —and wont’ let go until I’ve done my part, repeatedly! He is beginning to respond appropriately to things like laughter. He has the greatest little giggle.

So I’ve been having such a wonderful time thinking of all the fun Nik and I are going to have when he’s not in school this fall. Not that I had any specific things planned, mind you. It’s just the sense of freedom and relief since we made the decision to take Nik out of school. I was in the craft store the other day and walked past all kinds of finger paint supplies and fat crayons and play dough…and I had to stop myself from buying it all on the spot! I realized that being able to work with Nik at home will help fill some of my own need to do creative things. It might not look quite like I imagined, but —really —it’s the act of creating that is so crucial and that I have missed so much lately. I was getting really excited about home schooling.

Then the shoe dropped. Without getting into the details, Nik’s only insurance is Medicaid. For which we have been incredibly grateful; they’ve covered everything that we’ve needed so far. Until now.

Miss K, the admin at our therapists’ office, told me yesterday that they had gotten approval for only a limited number of weeks. Not a big deal; it’s easy enough to get new prescriptions/referrals every so often. The kicker, though, was the note on the bottom of the authorization form “…then transition to school.” I felt like someone had kicked me in the gut with steel-toed boots. Not the sharp stab of immediate pain, but the dull ache which builds and builds. By the time I got home with Nik, I was in a state of near hysteria. I held it together long enough to give Nik his lunch and get him down for a nap. Then. I. Lost. It.

I pulled myself together after Niksdad and I talked about it. We decided not to get too upset —well, a little is good —until we checked it out with the insurance. Maybe we misunderstood. Uh, no, apparently not. I talked to someone from Medicaid today and explained the situation and that we had not intended for Nik to return to school because he had not made any progress. The response I got was “Once a child turns three, it is the school district’s responsibility.” Ohhhhhh Kaaaaaaayyyyy.

So here I am with a 3 ½ year old who functions, for the most part, like a 9-15 month old —with some amazingly age- or near-age-appropriate scatter skills —with concomitant medical issues whom no one wants to take responsibility for providing the necessary and appropriate services. School says it medical; Medicaid says it’s educational. Mama says its bullshit!

Niksdad and I both agree that school is not the place for Nik. In the year he has been there —receiving his “30 sessions per year…minimum 15 minutes group, consultative, or individual…” in each of his services — Nik has made NO MEASURABLE PROGRESS. Now, I don’t say that to be dramatic. We have evaluations done by different professionals at different times throughout the year —including the recent evaluations done by the new OT, PT, and SLP. Every single one of them puts Nik at exactly the same age equivalent as the other reports. NO MEASURABLE PROGRESS.

Now, Nik has certainly made some progress, most of it very recently, but he continues to fall further and further behind his peers. This child whom every professional that has worked with him acknowledges is “incredibly smart,” “Very determined,” “a great problem solver” among many other things. How is it possible that this child then has not progressed? I guarantee it’s not for want of Nik’s trying!

So now we are in a holding pattern. In some bizarre turn of serendipity, I did not send the letter to school yet to withdraw Nik. Whew! I’ve gotten past the feeling of being kicked in the gut but not past the anger or frustration; I will need both to fuel me when I want to quit because I am tired.

I’ve reached out to some parents I know in my area who are very good advocates. Both have children with special needs who are significantly older — 18 and 22 — and both advocate for other children through advisory councils and through the child welfare system. I am hopeful that one or both of them can give us some guidance about our next steps. I am also looking in to finding an attorney should the need arise.

So here I sit, preparing for yet another of Nik’s surgeries. Oddly enough, it’s barely even registering on the anxiety scale. I don’t know if that’s because we are truly relaxed and know that Nik will come through with flying colors, or if it’s because I am so wound up about the school/insurance conflict. Whichever it is, we’ll take all the prayers, good karma, love, hugs, and laughter we could get about now. Our well feels a little dry.

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