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As many of you may recall, Niksdad —once a professional Mechanical Engineer licensed in three different states —has gone back to school for nursing. Not just any ol’ nursing, no sir not for him. He wants to be a pediatric nurse anesthetist.

In spite of the fact that he’s already earned multiple degrees, Niksdad had to re-take some courses in order to qualify for the nursing program he is in. He has been in school for two years now —maintaining a 4.0 average, too, if I may brag for a moment —and has finished all but one of the requirements for his LPN (licensed practical nurse); the final hurdle is this exam.
He takes it tomorrow at 7:30 a.m. (Eastern).

He’s been studying like crazy for the past couple of weeks. I know he’ll do great; he never trusts his own knowledge and brilliance. Please think good thoughts for Niksdad to pass his exam tomorrow. Once he passes that test he can start working as a nurse! (Goodbye, Home Depot!)

Of course, I won’t even start to think about the extra year to complete his RN, the year he has to work after that, the additional Bachelors degree (BSN) he must get, followed by the Masters in Nursing he needs to then enter his chosen field.

There are lots of steps and stops along the way. But this one? It’s a biggie —and I’m so proud of him.

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From pigtails to perfume
I’m growing up so soon
Going to parties
I love having my own room
Don’t spend as much time at home now
There’s so much to do
But I know, it’s true

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

I fill up my diary
With all my dreams and hopes
My future keeps changing
Like a rainbow kaleidoscope
A special boy waits just for me but
Even though he’s so nice
I know, inside

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

Soon I’m gonna be all on my own
I feel ten feet tall
I’m not that little girl any more
I can do it all

I’ll always be daddy’s girl
Out in the great big world
He’s taught me what’s right from wrong
I feel so strong
I’ll always be daddy’s girl

The greatest gift in the world
Is being daddy’s girl
He’s given me the perfect start
Right from the heart
I’ll always be daddy’s girl
I’ll always be daddy’s girl
I’ll always be daddy’s girl
Daddy’s girl

Daddy’s Girl ~ Sailor Moon

You know, I didn’t fall for just any ol’ Tom, Dick, or Harry. Oh, oops —ahem— actually I did. My grandparents had a funny sense of humor and named my father and his brothers —one fraternal and two identical triplets born in 1931— names which could be (and were) shortened to Tom, Dick, and Harry. They were minor celebrities in their hometown.

Happy Birthday, Daddy!
Though the years have changed us, they won’t change my love for you.

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In the midst of some continuing troubled times with Nik’s increasing chronic pain episodes and so many moments when I feel tired and hopeless about any number of things having to do with Nik’s development and future, Nik somehow finds ways to make me smile and laugh. Or to weep with overwhelming love.

So many of these moments involve either his antics with food

Of course, I completely understand the attraction. I’m just as crazy about the big guy as I am the little guy.

Thank goodness for my two anchors; when I seem to lose my way they are the beacon which guides me back home. Back to what matters most.

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It’s been a super long week…seven appointments in four days, 300 miles on the car (for the appointments), and a very high stress day yesterday which involved a missed workout, mopping the floor twice, wiping down the TV and entertainment center and shampooing the sofa. Oh, and a solo-parent outing with Nik on Thursday night in a non-child-proofed house! In spite of all that, Niksdad and I managed to squeeze in a date Friday night and all three of us had dinner with my parents tonight. I even managed to fit in three workouts this week.

In other areas:

Keep your fingers crossed…I think we’ve debugged the episodic pain thing (no thanks to any doctors though!), or so it seems. Since we increased Nik’s caloric intake and are making sure he gets a snack or something roughly every three hours, Nik’s been sleeping anywhere from ten to twelve hours each night…straight through! And the day time episodes have diminished significantly; we’ve gone from ten plus episodes a day to roughly half a dozen or fewer a week now. I really do think it has something to do with his metabolism or his endocrine system; it wouldn’t surprise me as I have some issues there as well. Still, we are going to go ahead with the video EEG (Feb. 26-28) to make sure it’s not related to any seizure activity. Nik’s seizures are, for the most part, subtle and can be easily missed. Occasionally, like last night, he will simply drop. Fortunately, Niksdad was on hand to catch him so we avoided any bloody lips or nose, thank goodness!

There are times that the pain seems to strike Nik completely out of the blue; he’ll be having lunch or playing happily with a toy and then —all of a sudden he begins to cry and punch himself in the head or poke at his eyes. Those are the ones which cause considerable consternation for us all. But, there are times when Nik uses the same behavior to communicate his anger, frustration, or boredom. Teasing out the difference between the two has been much easier since we made the assumption that any actual discomfort may be caused by hypoglycemia or something in that realm.

Really, though, I’ve got to give Nik credit for his smarts; he’s identified the fastest and most effective way to get Mommy and Daddy to drop everything and come running when he wants us. Since he can’t call out for me, and he can’t tell me what he is feeling —yet—he bangs his head. I don’t like it but it makes sense to me. The next step is to work on finding ways for him to express his frustration without causing himself physical harm. My mother and I are constructing a very large “crash pad” that I want to try to get him to use for those times. We’ll see how that works out. Meanwhile, I need to get things rolling to procure the AT devices which were recommended at Nik’s recent AAC evaluation. If we can get those into use I think we will have a pretty good shot at, eventually, making some headway in minimizing Nik’s acting out of frustration.

I don’t know if Nik is going through some sort of separation anxiety phase right now —or maybe it’s just a control issue; lately he wants me to play with him constantly. He loves to play with his shape sorter —he has three different kinds, two of which he has mastered and the third he is well on his way to mastery. If I sit with him and talk to him while he works —Oh, look it’s a red triangle, Nik. Where does the red triangle go? Can you show Mommy the blue square? —Nik will empty and fill the darned thing a dozen times or more if I let him. But the minute I turn away —even if I get up to blow my nose —Nik gets up from the floor and begins to methodically throw all the pieces over the gate; he never seems upset —in fact, he laughs this giddy little giggle while he is doing it. If I stop him and sit down with him again he will continue to play happily.

The kid is insatiable for the company of Mommy or Daddy. We don’t necessarily have to be doing something directly with him; we just have to be close enough for him to engage us if he wants to. The irony is that when I try to take him to the Y and put him in the Kid Zone (childcare) so he can play with other people, he completely freaks out. Last week he got himself so worked up that he threw up everywhere. I know that if I can spend a few minutes with him and distract him with the toys he will be fine and won’t even miss me.

Yesterday morning was beginning to be a repeat of last week; when I told the attendant that I needed to help Nik transition, I was told emphatically that no adults other than Kid Zone attendants were allowed in. This particular person didn’t know Nik (I don’t usually take him on Saturdays) so they didn’t understand the need. To them, they just saw a small child with a behavior problem; their attitude was pretty much Tough luck, lady! I left angry and frustrated —and had to blow off my workout partner! The people that work there during the week all know Nik and work with me to help him adjust. In fact, when I see these same ladies out in the grocery store they all ask me Where’s Nik? How’s he doing? We haven’t seen him in a while! There’s a relationship which gives us the flexibility and understanding to bend the rules a bit.

Yesterday was my first time encountering a person who either didn’t get it or didn’t care; it was eye opening for me in many ways. I realize there will be many, many people who neither get it nor care and I need to figure out how to handle it in a way that takes care of Nik without alienating others. I know we will encounter it more and more as we venture out into the world beyond the safe and familiar confines of our home.

Today, though, provided a foil for yesterday’s anger, frustration, and disillusionment. Niksdad didn’t have to work so we had a nice little family outing this afternoon —at the Y! We figured it would be a good idea to see how Nik handled being in the pool before we plunk down the fee for the special adapted swim time I wrote about here. It’s been about six months since Nik has been in a pool of any sort so we weren’t quite sure what to expect.

The tears started as soon as we pulled up in the parking lot; seeing Nik’s bottom lip quivering and the tears running down his cheeks nearly undid me. But we took a collective deep breath and forged ahead. Once Nik realized he wasn’t going to the child care area he calmed down —until he got into his suit and entered the pool area. Does the phrase “clinging monkey” give you a clear enough image? As soon as Nik got into the pool with me, the tears and panic set in. I don’t know if it was a sensory issue or just plain old fear; I suspect it was some vestibular insecurity. Whatever the cause, it wasn’t pretty!

I held Nik tight in my arms and sang one of the lullabies from Mary Poppins in his ear. That helped a bit but he was still really clingy; Niksdad and I were both surprised as Nik was once so comfortable in the water. Eventually, we found a distraction in the form of some pop-beads which were floating in the water. Niksdad and I got Nik interested in taking them apart and putting them together again; the whole time I was giving him some deep pressure around his pelvis and making sure he could feel my body under his. About fifteen minutes after we got into the pool, Nik relaxed his grip on me and seemed to settle in. By the time we were done —about thirty minutes later —Nik was only holding onto my index fingers, splashing, kicking, and even dipping his face into the water!

The whole family left the pool in a great mood. You might say we were floating. Not a bad finish for a week that started off feeling like we were drowning!

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The purity and generosity of a child’s heart can be astounding —and humbling. A child’s experience has not yet shaped the walls and barriers that we erect to protect us from life’s insults, injuries, and injustices. Children, somehow, have an uncanny ability to see the heart of a person when they are given a chance to spend some time with them. It is evident in the way a small child will shy away from a family friend or gravitate immediately to a seldom seen relative. Their radar is highly accurate when we give them a chance to use it and listen to it. The gifts we can receive from this can be profound —perhaps even miraculous.

My in-laws arrived on Tuesday night. As I wrote in this post, I was filled with trepidation, anxiety, and resentment at the intrusion. The history between my MIL and me has been cordial —on the surface —but strained as far as I am concerned. There is a lengthy history on her part of passive-aggressive behavior —toward even her own family—lying, secrecy, condescension and resentment when things do not go according to her plan. On my part, there has been anger and resentment at her manipulation of her own family members, her intrusive questions about aspects of our lives which are none of her business, and —the most damning sin in my eyes —her cavalier attitude about her only grandchild, my son.

My father-in-law is a man of very few words —to anyone; he spends much of his retired life outside the house. I don’t know if this is to avoid confrontation at home or to fuel his rabid obsession with trains —all things trains. Knowing what I now know about Autism, I might venture to guess that he falls somewhere on the spectrum but I cannot say for sure. In any event, when it comes to maintaining family relationships (or not), my FIL simply goes along for whatever ride his wife directs. My FIL is cordial and affectionate enough when it comes to me; I don’t think he harbors any resentment or ill-will. I do think he is simply tired of fighting in his own home so he tunes out or goes along. The net result is the same —ineffectual.

The last time my in-laws saw Nikolas was June of 2006; it was a few weeks before he started school. At that time Nik wasn’t yet standing on his own and he wasn’t doing much communicating; he was a happy little boy in his own world which, sporadically, he would open up to others. On that last visit, he wasn’t terribly interested in his grandparents and, frankly, they didn’t know what to do with him. They were at a loss as to how to be with him.

I understand that uncertainty may have fueled much of my MIL’s misinformed and intrusive inquisitions —about Nikolas and how we are raising him —in the intervening months since that last visit. Perhaps, as my husband once suggested, she was afraid of what she would see when she came to visit and so she stayed away. Meanwhile, she created an alternate reality in her mind —a reality which was far from what we experience with Nik and of Nik each day. In spite of our assurances that Nik really is making tremendous progress, I think my MIL could not bring herself to believe our words. Yet, on the other hand, she could not bear to see for herself if her imagined reality were to be true.

My logical mind understands and appreciates the difficulty of her dilemma —truly. But the proud mama, the loving wife, the woman who wants to share her bounty with the world has such a hard time not being angry and resentful.

My son, it seems, would have it be otherwise between us.

From the first moment my in-laws saw Nikolas on Tuesday morning (he was already asleep when they stopped by Monday night), my hackles were raised; I was in my full protective-mama regalia before they even walked in the door. As I sat in the loft, making notes from a conference call I had just completed, I could hear my MIL talking in a baby voice —in the third person —to Nikolas (who was in his seat having his lunchtime tube feeding), “Ooh, what songs does Nikowas know?” “Grandma’s so happy to see Nikowas!” “Grandma wants Nikowas to use those toofies to chew-chew-chew.” Nauseating. Infuriating. I could hear my FIL asking Niksdad, “Does he sit in that chair all day? Can he roll around on the floor? Can he crawl yet?” I had to wonder if they even listened to all those weekly phone calls from their own son, Niksdad, telling them about all of Nik’s milestones and progress. Did they even look at the pictures we’ve sent on a regular basis?

To say that I could feel the visit rapidly sliding downhill would be an understatement —a gross understatement.

Yet, somehow, after a crappy partial day in which Grandma cooed and talked baby talk between bouts of grilling us about “Will he ever…” or “Do you think he can…” and “Have you tried…” and a near family meltdown over a miscommunication —in which no one was blameless —we managed to go out for a nice meal together to celebrate Niskdad’s birthday (which is today). I was so upset that I really didn’t want to go but I love my husband very much; when he told me it would mean a lot to him if I went —that it wouldn’t feel like a celebration without me —a swallowed the lump in my throat and went anyway.

I don’t regret the decision. Somehow, in the intervening hours between the cloying baby talk and having my buttons pressed, my in-laws found their equilibrium with Nik. The baby talk stopped —well, for the most part —and they really began to engage with him. As you can see in these pictures, Nik rewarded them richly for their efforts. They both expressed such surprise —tinged with grandparently pride —at all the things Nik is doing now. They marveled at his problem-solving aptitude, his laughter and music, his independence in so many things; they were bowled over by his charm. Finally.

When Grandma and Grandpa stopped by today to say their goodbyes, Nik was sound asleep (see adorable proof here). It gave my MIL a chance to spend some time talking with Niksdad alone. She made it clear that she didn’t want to be interrupted so they went to the living room. My first reaction was that I was miffed; I thought she was snubbing me in my own home. Since we live in a small townhouse and my MIL wasn’t making any effort to speak quietly, I eavesdropped —shamelessly. I don’t regret it one iota. In fact, I am so grateful that I listened; I gained tremendous insights into some of my MIL’s attitudes and behavior —and why she has nearly severed all ties with her siblings. The latter fact has baffled me for years and Niksdad has never been able to shed any light either.

Since it is not my story to tell, suffice to say the story my MIL told left me stunned and horrified —and feeling much compassion for her as a woman. I know it doesn’t change the behavior she has exhibited through the years, but all of a sudden I felt like I had been looking at her like one of those Rorschach ink blots and only seeing one thing. What I overheard today gave me a different picture and made me pause to think about her actions and attitudes more as her defense mechanism. Much like I often do with my own son, I had to put her behavior into a different context than the norm I expect in most relationships.

When Nik awoke, he was ecstatic to see his Grandma and came right over to climb up on her lap to play. I watched them laughing —both of them chortling with glee —as they had their little love fest. Nik’s Grandpa even joined in —in his own stoic way. I took lots of pictures and was struck with awe at the unfettered love and joy I saw through the lens. The tenderness with which Grandpa stroked Nik’s cheek reminded me of my own husband; a man of few words most times, he can convey so much love and tenderness with a touch or a look —whether it be toward Nikolas or me —and it melts my heart. I could see the family connection being made before my very eyes.

It’s been a long, long time coming. I know there will always be the same behaviors from my MIL but I have new knowledge —a different context in which to see her. I also, apparently, have the world’s most charismatic child —a spirit capable of healing tremendous rifts in people’s hearts and souls and of teaching important lessons to those who are willing to listen and learn.

When the student is ready, the master appears ~ Buddhist Proverb

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See, it’s not all bad around here…

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Nik’s Autumn Almanac

From the dew-soaked hedge creeps a crawly caterpillar,
When the dawn begins to crack.
It’s all part of my autumn almanac.
Breeze blows leaves of a musty-colored yellow,
So I sweep them in my sack.
Yes, yes, yes, it’s my autumn almanac.

“Autumn Almanac” by Ray Davies, The Kinks

Yesterday, the sun rose brightly on a crisp, dew-sparkled morning. The call of early geese carried on the wind. Leaves swirled from the large maple in the neighbors’ yard, drifting down to grace our late summer garden with a scattering of golden yellow, flecked with brown and red. The cats lazed on the window sills in the dappled morning light as our household awakened lazily without the aid of alarm clocks or a crying child in the dawn hour. Seven o’clock. Blissful awakening.

It felt like a good morning for a family adventure. So off we went in the picture perfect autumn weather to the Fall Festival held by the same folks that hosted the Peach Festival in August. It was busy in a small town sort of way —just enough to entertain but not too much to overwhelm.

There were children’s mazes made of hay bales, a giant maze cut through the corn fields, pumpkin painting (which we skipped as Nik isn’t quite into that yet), a petting zoo, hayrides and pick-your-own-apples and pumpkins, as well as corn and soybean “sandboxes” and fresh pressed apple cider.

Nik exhausted himself in the fresh air and sunshine. His favorite things were the sandboxes —total sensory delight, and the animals.

Nik made fast friends with Paddy, a five week old calf. It was a mutual affection, apparently. It was so wonderful for us to watch Nik really engage with Paddy; we actually had to keep him from climbing on top of the poor calf!
The change we saw from the last time we were here was phenomenal! Nik was so much more aware of his surroundings and of the other children.

And he even managed to bring home about a quarter cup of beans; imagine “The Princess and the Pea” —in his shoes! They somehow got up under his pant leg and down between his orthotics and his foot. OUCH. Poor kid. No wonder he didn’t want to walk or stand after he got out of the beans. And here we thought he was just tired. But that wasn’t as bad as another kid who I watched end up with a diaper full of beans!

And, reminiscent of the peach ice cream encounter in August, Nik managed to surprise us by tasting and actually enjoying fresh pressed, mulled apple cider. Ordinarily, Nik won’t drink anything but water. If he has a single sip of juice or milk he pushes the cup away and makes a face as if I poisoned him. My drama child! Not only did he not push the cup away, Nik actually kept pulling my hand back to give him more. Needless to day, there’s a half gallon container of the stuff in my fridge right now.

I love the autumn; it always feels like a fresh start to me. And after all we’ve been through recently, we’re certainly ready to put it behind us and move on.

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