Archive for the ‘connection’ Category


I am not a quilter. But I love the imagery and affinity evoked by the very idea of an old fashioned quilting bee. Not quite like the one in this movie. I envision something more like what I imagine my great-great grandmother, Addie, might have taken part in. I have one of of Addie’s quilts; sometimes, I can imagine her sitting in the circle creating it. Oblivious to the fact that it is an antique and an heirloom, it is the very quilt I took with me to boarding school as a lonely teenager. The same one I huddled beneath through freezing winters as a a broke and starving grad student. The very one I wrapped around my grieving self the night my seventeen year old cat died just months before my wedding. The quilt is old and worn —and rendered all the more beautiful to me because of its history.

The women of her small community on the Texas prairie gathered together creating quilts —not necessarily for special occasions but for everyday use. Sturdy, warm, durable and beautiful, they would be made from scraps left over after making dresses, work shirts, trousers, or baby clothes. Some would even incorporate bits of grain and feed sacks.

Each woman would work on her own quilt; her fingers deftly moving in an unconscious rhythm as the needle weaves through layers of fragments, piecing together a pattern only she can see in her mind —to others it may look like random blots of color in abstract. Each woman stitching without thought as she listens to the stories in the circle, sharing her own in turn.

That is how I feel sometimes about blogging —like we are in our very own sewing circle. This gathering of women —pioneers in our own way —sharing our joys, our sorrows, our dreams, fears, and frustrations as we stitch together the fragments of each day, each moment. At first, the pieces do not make sense until we take a step back and look from another’s perspective. Each one of us has felt what the others have —or we are now, or will sometime in the future. The patterns of interconnectedness emerge with each passing day.

When one of us is joyful we share the glow. When one is low and struggling we reach our hands across the circle to hold her up. Sometimes we even lay aside our own sewing to cradle one another as we work through our grief, our fears. At others we may turn to one another and ask for help with a complicated stitch or the placement of an odd scrap of color that just doesn’t seem to fit. We help each other find our true north when we are lost and we help each woman find the fabulousness within her.

The energy of our circle is powerful and peaceful. We are soothed and encouraged by our utter acceptance and understanding of one another. We are pioneers from different walks of life yet we are connected as we forge our families and communities on this uncertain frontier.

This quilt was made for our wedding by my husband’s “Aunt Pat” and is one of my favorite things on display in our home. Alas, I don’t have any pictures of Addie’s quilt and it is now packed safely away to protect it.

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There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease

It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more

(A Change In the Air ~ Clint Black)

There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.

It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.

The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.

The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.

Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.

I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.

If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?

I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.

In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.

Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.

Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.

And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.

The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.

Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.

And that’s a pleasant change, indeed.

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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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We all sing with the same voice
The same song, the same voice
We all sing with the same voice
And we sing in harmony

Sesame Street

Some recent comments on some of my posts, coupled with some email exchanges, have been on my mind lately. Some of you have commented to me how I have or my family has “been through so much worse than we have,” or “I know my situation is nothing like what you’ve been through,” and things of that nature. I wanted to respond to those well-intentioned, self-effacing, sometimes self deprecating words. (No, wait, don’t leave…it’s good stuff, honest!)

I suppose to someone looking on from the outside, yes it is true; my family, my child especially, has been through very much. On one hand we have the fact of Nik’s extreme prematurity and all its inherent health-related issues. Educators and health care professional are often surprised to meet Nik for the first time; the child they read about on paper is frail and sickly —potentially a child to be pitied for his immense challenges in his short little life. The child they meet is a dynamo —uncomprehending of the word “disabled” or the fact that he isn’t like his typical peers.

On the other hand, I think, in many ways, parenting my child with his myriad needs and diagnoses has been easier for me than parenting your child may be for many of you —my very special friends. While it’s true that our daily life with Nik is often an intricate contredanse in which we must weave threads both medical and developmental, Niksdad and I have had the benefit of being hit with the worst case scenario from before Nik was born.

We already knew that our child may not be “normal” based on ultrasounds showing how small he was for his gestational age. And, certainly, we hoped and prayed for the most normal of possible outcomes. Yet, when it didn’t turnout the way we would have preferred, we made a very conscious decision that our child would be loved and encouraged and believed in —no matter what. We had to throw our expectations out the window from the moment Nik took his first breath with the help of the respirator.

Many of you, my wonderful friends, had what I might call the storybook experience of pregnancy and childbirth. Though there may be some cases where there were some prenatal complications, by and large you had your robust, healthy child who went home from the hospital the same day you did —again, with some few exceptions. You joyfully announced your child’s birth, shared photos, breastfed, and generally raised your completely normal child.

Then you were blindsided by this thing called autism. However it came, whenever it came you were not prepared. You didn’t have the luxury of being able to “gird your loins” as Niksdad and I did. In an instant, everything you knew about your life with your child was changed —radically. I cannot even fathom the shock and overwhelming grief this must have caused. At least, with Nik, I have some idea of the cause(s) of many of his underlying disabilities. I wish that you each could have that for your child. I know that there are many things I cannot undo or fix for my child —things that simply are what they are. I sense, in so many of your writings, the pain of the search for answers, reasons, and understanding—for something you can identify over which you may be able to exert some measure of control.

I recently wrote to one of my dear online friends (and I do consider you to be a dear, dear friend —a kindred spirit —though we’ve not yet met) that I sometimes think the issues our children face in school must be more difficult for a her child than for mine. Whereas my son is more obviously disabled —and has the medical dossier to support him in the face of those who might wish to deny him access and acceptance —her child appears to be just like every other child at school. My son is in a segregated school with dozens of other children like him to varying degrees; the school staff is trained to deal with all kinds of variations on the theme of disability. Her son must make his way in a school where “Special Ed” may still have the negative connotations of previous generations. In some ways, we really haven’t come as far as we think we have.

Indeed, I read a recent post on Redhead Momma’s blog in which she relates a conversation with a principal of a neighboring school —in which the principal expresses her ignorance of autism and how autistic children can benefit from a variety of teaching and therapeutic techniques and measures. I was absolutely floored to read that until I took a step back and realized how fortunate we have been to have a school like Nik’s —imperfections and all. There, he is completely accepted and loved for who he is where he is —right here, right now.

In the final analysis, I must confess, there are times I stand (well, sit actually) in awe of my fellow special needs mamas. To me, you have had it rougher —tumbled like a trailer in an unexpected hurricane —and have risen so beautifully to the occasion. I learn much from the things you write on your own blogs and in comments on mine. I think that is what I love best about this cyber kaffe-klatch we’ve got going here —the recognition that we are all the same in our differences yet different in our sameness.

“We all sing with the same voice” and the song we sing is that of a mother’s love for her child. The notes and harmonies we create together are powerful and breathtaking. Let them be sung from the mountaintops.

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As my little hometown grows up and becomes overrun with new housing developments and shopping centers, it is becoming increasingly rare to find celebrations of the old ways, the agrarian culture, and the simpler times. Sigh. As Rascal Flatts sings, “I miss Mayberry…”

One of the neighboring towns hosted their annual peach festival this weekend to commemorate the town’s once rich agricultural history. You see, Delaware was one of the top peach producing states in the union until the dreaded peach blight of eighteen-something. Seriously. Nonetheless, there are a few large farms around doing a booming business; one of them always hosts a huge customer appreciation event complete with music, hayrides, a small petting zoo, and free peach ice cream cones all day long.

So, Saturday morning found NiksFamily heading out in the sweltering, muggy air to embark upon an adventure —to expand our cultural horizons. It was, I think, the start of a new family tradition. We ventured into the town center —all two blocks of it —to check out the official peach festival (which is separate from the event hosted by the orchard). The town’s single train station —long ago converted to the town hall —doubled as the main stage on Saturday. Heck, it was the only stage!

We wandered the street along the edge of the railroad tracks, perusing the offerings of myriad vendors. The local high school drum corps playing in the background, Niksdad and I held hands as we wandered and sweat. Nik wanted to walk a bit so we took turns holding his hand for support. When the heat became too much to bear, Niksdad hoisted Nik onto his shoulders. Now, I have been to many “street fairs” when I lived in NYC and near San Francisco —the kinds with a gazillion different vendors and umpty-ump musical acts (some big names) and an air of highly organized chaos about them. Saturday’s festival was nothing like it.

There were tables of crafts and clothing, jewelry and hand-sewn handbags, potpourri and wood art. And the baked goods. Oh, the baked goods. None of the slick, mass produced bakery fare here. No sir, each and every pie, cookie, loaf of bread and you-name-it —all home baked by the ladies of the XYZ church auxiliary. Such a fierce competition between them, too! I found myself getting teary as we wandered; I suppose I could claim it was from the heat or the sun in my eyes. The truth is, I felt an odd connection to another time; I felt nostalgic for a life I’ve never known but always dreamed about. I felt like time must have stood still for this one day, just for me. And that was just the beginning…

After melting under the morning sun, we got in the car and headed up the road to the farm for the customer appreciation event. Now, my mother swears she use to take me to this farm as a kid —to pick out pumpkins; I have no recollection of this whatsoever. I am sure I would have remembered such a beautiful farmstead; their event was so much nicer than the festival we had just left. There were huge tents —set up under gigantic shade trees which have to date back well over 150 years —with volunteers serving up refreshing ice cream full of thick chunks of yummy peaches. Mmmmm…There were hayride tours of the orchards, a small petting zoo —kind of a rag-tag collection of family pets and farm animals —and a musician playing wonderful background music that you could sing along to. Perfect.

I don’t think words can do justice to the fun we had. Nik wanted to walk around holding onto one of our hands or he wanted to scoot along on the ground. Knowing how much Nik thinks he wants to eat versus how much he actually does (rather, DOESN’T) eat, I decided to see if Nik would deign to take a lick from my ice cream cone. He’s never really cared for ice cream before; it’s too cold and too wet for his liking.

Apparently, the secret is all in the cone! Not only did Nik enjoy the ice cream, he wanted to have his very own cone and “yelled” at me when I tried to share with him. He actually looked me in the eye, pushed my hand away and said “Ng, ng, ng, ng!” which is how he says “no.” Nik didn’t really want the whole cone, he just wanted the control. But the fact that he ate numerous bites —licks, really —of peach ice cream was pretty monumental. Especially because he sat on the ground next to me the whole time and even tried to feed me a time or two. New stuff. A big deal.

Ice cream finished, we wandered a bit and ran into some people we know including one of the para’s from summer school. She was pleased to see Nik; he actually acknowledged her presence and held her hand for a moment. It was a sweet moment for all of us.

From there, we found the petting zoo. Nik didn’t seem to really recognize that there were animals there; perhaps it is because he hasn’t had much exposure up to this point? There was a two-day old calf, some baby bunnies, a couple of pygmy goats, and a dog. An interesting collection to be sure, but it was just enough to captivate the smaller kids. Once Niksdad helped him pet the calf, Nik seemed to catch on a bit.

By lunchtime, it was clear that Nik was beginning to fade. We gathered up our dirty little ragamuffin —with his dusty shorts and his dirt-smeared face he looked like the most typical three and a half year old boy —and began to head to the car. When I heard the song that was paying, I had to stop and dance with Nik. How could I possibly resist the lure of “American Pie?” I scooped Nik up and whirled him around as I sang to him —and he looked me in the eyes, threw his little head back and laughed! The more I sang and whirled, the more he looked right at me, smiling and laughing and clapping his hands. I could have died on the spot and gone with a smile on my face!

Yes, definitely an occasion to be repeated every year!

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In case anyone’s been worrying about my absence over the past few days —all is well in Niksworld. In fact, you could almost say it’s been idyllic. It is kind of amazing —when I let myself remember to do it — that when I put something out to the universe, God, my subconscious —or whatever one believes in— things do have an uncanny way of unfolding.

My recent posts about my brief existential crisis, and the outpouring of support and warmth from so many readers, really helped to crack me open a bit. I don’t think I even realized how guarded I was being —with my time, my energy, and especially with my heart. Perhaps it was simply fatigue, or perhaps it was a phase of a larger, natural cycle which is occurring in my life and I couldn’t see it. Whatever it was, it feels like it’s on the upswing now!

These past few days have been absolutely phenomenal in every single way I could possibly describe; perhaps I should go buy lottery tickets tonight? (Only half kidding…) I’m not even sure where to begin to relate all the things that have happened over the past week; forgive me if I ramble in a somewhat disjointed fashion from topic to topic.

First of all, things with Niksdad have been peaceful and relaxing. We’ve spent some great time together working on some household things both big and small, catching up on a bit of sleep, and simply spending time together both with and without Nik. My sixteen year old niece even volunteered to babysit last night — FOR FREE! Yes, we had a date! An honest to goodness date.

Niksdad shaved and I even wore makeup and did my hair! Not that we don’t do those things on a fairly regular basis —just not always for each other or with such intention. We got tickets to see The Bourne Ultimatum and planned on dinner before hand. Nothing fancy because of the time constraints, but it was out and it was without Nik! I won’t spoil the movie for anyone but I can tell you that we loved it! From the minute it started, we were clutching each other (well, maybe me a little more than him and maybe him for different reasons?) and the adrenaline was pumping. AWESOME. Oh, yeah, Matt Damon is sexy, too! Anyway, it was a wonderful night and it felt “normal.” I don’t mean normal in the sense that our daily lives feel abnormal; I mean “like the rest of the world” kind of normal. As in, “Ho hum, isn’t this so UN-extraordinary that it’s almost boring” kind of normal. We didn’t even talk about Nik!

It’s been sort of like that all week, though; like the spark has been rekindled a bit and the subtler expressions of affection are surfacing more. Even when we are together as a family —which we’ve been a lot this week —the feeling is present. We haven’t made it to the beach but we have gone to the pool several times. Friday we went to the “Can Do” playground before going to the hospital for appointments, and Saturday we went to the peach festival. (Each of the latter two events merits its own post…coming soon!) Niksdad even turned down a chance to work this weekend “Just because;” it felt great to have him put us first again.

Like I said, it’s been a full week for us here. Nik, too, has been having his own momentous happenings. The kind of things that parents of “typical” kids might miss because they seem so “normal,” so expected.

We had someone come to the house this week to do an evaluation of Nik’s eligibility for services through the Division for the Visually Impaired now that he has been discharged from the “Deaf-Blind” program. When the woman, Ms. S, arrived Nik was playing by himself in the family room. As soon as Ms. S. walked into the room, Nik’s attention was riveted. He actually stopped playing, scooted over to her and pulled himself to stand using her legs. He looked up at her with a big smile and reached for her hands to play “clap hands” as he does with Nanny. Ms. S was a good sport and played along. I was surprised to see Nik take an active interest in someone besides the little boy in the mirror! What happened next floored me.

Nik, still standing —he is getting a bit steadier with each passing day —reached out to take Ms. S’s hand in his and led her to the sofa to sit down. Such the gracious host! He then proceeded to climb up on the sofa and sit next to her to continue their play. Ms. S did not realize it but she had been given a signal honor! Nik has never done that before.

That same afternoon, when we went to the pool, Nik was very aware of other children nearby as he cruised along the edge of the toddler pool or sat splashing happily in the water. Though he didn’t actively seek them out, he watched and seemed to perk up when one approached him. He even flirted with another mother! I wonder if he could sense her friendly curiosity about this happy-go-lucky child splashing and singing.

She wasn’t simply another mother at the swings; this woman was —is —a kindred spirit. She proudly introduced her beautiful 10 month old son with Down Syndrome and we bonded quickly. We shared an understanding that the path we have been placed upon in mothering our different children is not one easily accepted and understood in our smallish community. We lamented about the school system and some other shared frustrations, but mostly we talked about the special joys of our children and the moments we never want to take for granted. The whole time, Nikolas climbed all over this woman, playing with her sunglasses, her son’s float, her daughter’s goggles. The woman not only did not mind but encouraged him and praised him for being so smart and engaging. It felt like the hand of God had reached down to touch my heart. I didn’t get the woman’s name or phone number and I may never see her again, but I will remember her for a long, long time.

Thursday was a very eventful day. We started the day with a four hour eye appointment —ugh! I had a session with my trainer at the Y so Niksdad took Nik to the eye clinic. It’s not an ideal set up; you have to arrive by a certain time and be prepared to wait with lots of other families. Still, the doctor is wonderful and she’s the same one we would see if we drove an hour each way to her private office. So we trade off the hours in the car for the hours in an office; at least in the office, Nik is able to move around and engage with his environment in a way he cannot in back seat of the car. Anyway, it turns out that Nik did great at the clinic —in spite of having to be restrained to have his eyes dilated. He was very social and incredibly patient!

That afternoon, after the already too long eye appointment and no nap, Nik had OT and PT. I worried that it would be too much and that Nik would simply fall apart. Oh contraire! Nik probably had the best session ever. Ever. As Miss D, the OT, brushed Nik and sang silly songs to distract him, Nik gazed adoringly at her! I was rather jealous, I must confess! Nik was putty in her hands as she did joint compressions and deep pressure. When Miss D put Nik in the ball pit, he not only grinned but he initiated a game of “you hand me the ball and I’ll throw it out of the pit and laugh myself silly” with her. Oh, the stabbing pain in my heart as I watched my son flirt and giggle and interact with Miss D; I don’t know if it was from envy or pride but it ached.

As if that weren’t enough, the entire session was filled with my exclamations of, “Miss D, he’s never done that before!” Even Miss D was surprised at how well Nik did with the swinging, the ball pit, crawling through the tube, pushing the cart, etc. He even let her put him in the big yellow gigaball —TWICE —without complaining. He hates the texture of smooth, sticky, inflatable plastic but he did it for her! He even graced her with a few independent steps. I am not sure if I want to hurt Miss D or adopt her! It was amazing, simply amazing.

Miss D handed Nik off to Miss T, the PT, for their session. It wasn’t quite stellar but Nik did some pretty good stuff. I can tell that he kind of falls apart after about 15 minutes with Miss T. I cant’ tell yet if it’s something about the dynamic with Miss T or if Nik is simply mentally fatigued by then. I think it’s the latter; there’s nothing about Miss T that Nik seems to object to —except for the fact that she’s not Miss D!

In the midst of all this wonderful-ness, I got a call from my husband telling me that my father had been in a car accident; he didn’t know more but was on his way to the scene with my mother. My heart lurched and my heart raced at the idea of my Daddy, Nik’s Granddaddy, in some mangled, broken state. I calmly told Miss T that I might need to go; Niksdad was going to call me with more information as soon as he got there. DAD IS FINE. Whew! To make along story short, he misjudged some distance for a turn and got hit broadside by a truck.

God must not want my Dad yet, because the circumstances of the accident are pretty freakin’ miraculous. The trucker was near his home and knew that it was a bad stretch of road so he wasn’t going very fast (about 40) —the local cops and EMS call the area “Helicopter Corner” because they are always having to Life Flight someone out of there. Amazingly, the point of impact was exactly on the door post behind the driver’s door. Another four to six inches toward the front and it would have been a very different outcome. Dad, we think, must not have seen the truck until just before impact. That is the only way I can explain the fact that he walked away from a totaled car without so much as a single twinge of discomfort. None. He’s been checked over from head to toe by doctors and there is no sign of any injury whatsoever —unless you count the wounded pride. 3 days later and Dad still has NO PAIN. Amazing!

So we’re living life in the fast lane here (ha ha). Big stuff. Good stuff. And it just keeps coming! I feel like I should put up a sign on my blog that says “Watch This Space” as I have more to share! Niksdad is working tomorrow night (yeah, his schedule got changed again) so I’ll have more time to write.

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We’ve been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run.
~Neal Young

Wow, who knew there were so many of us on this same journey?! Thanks everyone for not only your supportive comments on my existential crisis, but especially the reminders that “this too shall pass” (eventually). I guess I’ve gotten so used to worrying about something that it was inevitable I would turn my radar inward to myself and my marriage. Not a bad thing to do every once in a while, I guess.

Things are looking brighter these past couple of days. Niksdad seems more relaxed —now that he’s embraced the “no work for two weeks” concept. He’s been taking Nik to the park in the mornings after breakfast; giving me a chance to get back into my workout routine which has been interrupted by first Nik’s then my illness. It’s felt really good to get out of the house to do something that makes me feel more vibrant afterward. Sweaty, but vibrant.

We’ve made plans to take care of some projects around the house —big ones, like replacing the yucky carpet in the family room with some sort of wood laminate. The family room is where Nik spends a great deal of time and it takes a real beating. The carpet is ugly and stained and I don’t even want to think about what’s possibly growing underneath! We won’t be able to do the actual work until Nik goes back to school on the 22nd. But, the process of planning and making flooring selections —which of course leads to discussions of other projects —has felt good. It feels reminiscent of the early days in our marriage when we would tackle projects together in our first house —the one in CA, where we lived when Nik was born. We were partners and made a great team.

In fact, we still make a great team; everybody remarks on that and tells us how lucky we are. They are right. We’ve had to shift our focus quite a bit in these past few years but we’ve always worked well together —planning, discussing, researching, strategizing, dreaming together, and inspiring one another. Maybe we took our eyes off the road for a little bit but I think we’re on the right track.

It’s a bit like all the times I’ve been on a car trip by myself (in the olden days before Niksdad came along). I’d be off on an adventure, driving down the highway —not always toward a specific destination. I’d look down and the gas gauge would read near empty and the next exit wouldn’t be for miles and miles. I’d drive along, darting anxious glances at the fuel gauge every few seconds, wondering when I would run out of gas on some lonely stretch of road. Know what? It never happened; I always made it to a gas station in the nick of time.

I need to remember that more often when I get antsy about my life —especially my marriage. The frustration, though, of not being able to have consistent time alone together gets tough. Unfortunately, we aren’t exactly in a position to shell out bucks for specialty care givers —which are VERY hard to find around here. In fact, there’s such a demand that no one with the right qualifications wants to work the small number of hours we need. The respite system in our area is the pits for us right now. Medicaid doesn’t recognize the need for couples to go out once in a while as legitimate. If I worked or were in school, then they would consider our eligibility. The only drop-off respite we’ve been able to find doesn’t’ work with our schedule and our needs. So, we limp along with the help of my folks for now. During the school year I think (I hope) it will be a bit easier; some of the Para’s also do childcare/respite once in a while and I know lots of them!

Meanwhile, though, we’ve been making plans to do some things together as a family; things like a return trip to the beach, a trip to the zoo, a local peach festival this weekend, the pool at my parent’s country club in the afternoons (weather permitting), and a trip to a new “Can Do” playground which opened up about an hour north of here, near the hospital where Nik sees all his specialists. We might even try XBos again!

It feels like a time of renewal somehow. Maybe not quite what I had envisioned —you know, candle light and romance —but perhaps better, more important as we, Niksdad and I, learn to make the most of the precious time we do have together. Time that must include our son right now.

Long before Niksdad and I got married, I wrote a vision for myself of what I wanted our marriage to be:

Niksdad and I have a loving marriage and raise healthy children in a warm,
loving, creative, and stable home. Our relationship touches the lives of
many as we open our hearts and home to many children. Our love helps heal

Deep, huh? It may not look quite the way I had envisioned it all those years ago, but perhaps we haven’t lost our way after all. Maybe I just need to check the map every once in a while to realize that the wrong turns or missed exits will still get us to our destination —wherever that may be. And if I let myself, I just might enjoy the ride.

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Jennifer from Pinwheels has bestowed upon me a great honor —a Blogger Reflection Award. The award “should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy… of knowing them and being blessed by them.”

1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.

To steal Jennifer’s words (because she writes so eloquently that I want to weep sometimes…and often do!) —”These are my favorite sorts of blogging tags, because it’s full of kindness and good will. ” I agree; blogs that make me feel deeply often make me think deeply as well.

Without further ado, here are my choices–five blogs that make me think and feel inspired:

1. Life with Joey. Joey’s mom has taught me lots in the short time I’ve been blogging. She has a groundedness about her that is inspiring. Yet, she also has a strong sense of humor and is a fierce advocate for her sons —both of them, not just her autistic son. Through her, I’ve learned some practical tips, gained some new perspective, and realized I am not at all alone in this journey of parenting a child with special needs which include autism.

2. From Here to There and Back. I’ve tagged Kristen several times for many things. I can’t help it. I’m not sure how to describe it other than this: It feels like I have known her a very long time —maybe from a past life (if you believe in that)? Not that we know lots about each other, more that our spirits have somehow connected. She always has words of wisdom and encouragement and manges to reach out to see how I am even when it sounds like she’s in the midst of her own challenges.

3. Kristina at Autism Vox has been an inspiration to me. Through her archives of posts about her amazing son Charlie, and now through her daily posts about all sorts of things relating to autism, she makes me think about things I might not otherwise even notice —let alone actively consider how I feel or what I think. She has become my go-to link for quick sources of information about autism research, education, news, debate (of which there is always plenty!), and reflections on parenting children on the spectrum. I don’t know how she manages to do it all, but I am very grateful she does.

4. McEwen at Whitterer on Autism has been such a wonderful gift for me. She has her hands more than full with a houseful of kids, she straddles the line between Yank and Brit (with great translations for those of us who don’t quite understand some of the terms she might use), and she does it all with the damnedest sense of humor. God, the woman should be doing stand-up comedy, I swear! Whenever I need a good laugh (and the occasional tear), I stop by her site for a cuppa. Seriously, she inspires me with her ability to maintain a sense of absurdist humor in the midst of what can be very stressful. It’s a gift, a real gift.

5. Last, but definitely not least, is Sweet/Salty Kate. I found her site through Jennifer (Pinwheels) and have been voraciously reading each and every post. I can relate to so much of what she writes. I don’t really expect her to participate in this meme/award right now —she’s more than got her hands full right now. But I wanted to share her story and her incredible talent with all my readers. She is —to me—strength, dignity, and grace personified. Check her out; you won’t be sorry. (Make sure you read some of the recent archives, too.)

Thank you Jennifer, not only for tagging me and allowing me the chance to think about these bloggers, and their gifts, but for the gift of your strength, wisdom, and heart.

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I keep trying to write something today but my mind is whirling in so many different directions that I end up editing and censoring and losing my train of thought until I can’t even remember what I wanted to say.

Must be too many nights of interrupted sleep? Nik’s fighting another infection —a mild ear infection this time —and it makes him so uncomfortable. Combine that with the “normal” testing of limits and boundaries and, well, the picture really says it all. (Note: read the shirt.)
I am worn through and through lately and I don’t see an end in sight. Nik starts “summer vacation” in just a couple of weeks and I am trying to line up some independent therapy (which he needs regardless of the summer break) as well as keeping on top of the various medical threads we’ve got going. Let’s see, last week we had three appointments, this week it’s four, and next week we have another couple. Eleven in all this month…UGH!

I have been lurking on many blogs the past few days and finding myself alternately inspired and envious. Inspired by news of amazing progress of our children (here, here, here, here, here, and here), envious at the idea of taking any time to find my “long-lost mojo“, or travel to other locations for a vacation (like Kristen, Gretchen, Susan, and Jennifer). Then, I’ve been plain old emotional over things that really are quite gut-wrenching, and humbled by the way some writers can share. In short, I’m just not loving my own life this week. I’m feeling a little ragged around the edges. ANYBODY WANT TO TRADE FOR A LITTLE BIT??

So, the irony here is that nothing is actually wrong. In fact, Nik is continuing to make wonderful progress in some areas and not-so-wonderful progress in others. Welcome to parenting, right?

It’s just this freaking IEP and possible placement in a new school that has me so unraveled. The case manager from school called today to tell me the autism evaluator is ready to schedule the family meeting/IEP. I feel like the rug is getting ready to be yanked out from under me and I feel completely unprepared for an IEP meeting within the next ten days! Somehow I deluded myself into thinking we would wait until September. Shit, this feels like when Nik was born…we planned for February but he came in December. We weren’t ready yet. I’m still not ready yet!

Niksdad was off from work this week, courtesy of a scheduling SNAFU, so we took advantage of the time and did some projects we’ve been putting off. Catching up on finances, landscaping the front yard, getting our heating and A/C system replaced. We also spent some “quality” time together —as a couple and as a family.

My parents babysat on Friday night so Niksdad and I could *finally* go out to dinner to celebrate our anniversary (yes, that was last month). It was heaven and strange all at the same time. I cannot recall the last time we were out without Nik. Worse, I can count on ONE HAND the number of times that has happened since Nik was born. We made a vow to each other that we will try to get out at least once a month for “couple” time. It’s so challenging though with Niksdad’s work and school schedule along with Nik’s schedule of appointments and the timing of his feedings. It has been a real struggle for us to find both the time AND energy to do anything beyond collapse into bed with a book at night! Sigh…

We did get to take Nik to the water park at one of the state park areas yesterday. It was fabulous and scary. It reminded me a bit of Susan’s post (here) about the zoo. Expectations can be so funny. And they sneak up on one so quickly as they did me when we took Nik to the beach in June.

Nik did really well. He didn’t seem to mind the noise. For me, it felt like we were at a really loud cocktail party with kids running around in the background. My own “crowd anxiety” came up a bit but I didn’t let it stop me from having fun. Nik splashed and cruised around the kiddie pool and even went down the slides a few times (with assistance).

I was appalled at the rudeness of some of the kids. One little girl deliberately cut in front of us as we waited in line for the slide. We’re talking a kiddie slide with a line of maybe half a dozen kids; it wasn’t as if she had to wait hours for her turn. I got so angry that I actually said something. Usually, I would be quiet and seethe with indignation; that’s usually my M.O. if it is something that affects only me. But you don’t mess with my little guy! Oh, no, no, no!

I told her that she was a terribly rude little girl and should learn to wait her turn. She just glared at me and motioned for her friends/siblings to join her. At that point, I wedged my size 16 butt in front of the other kids (she was already at the head of the line) and told them that they would just have to wait their turn like everyone else…it was HIS (Nik’s) turn right now. I felt like the bitchiest thing on earth but I didn’t care! I mean, it’s one thing if a kid can fend for him/herself or at least speak up but Nik can do neither so I did it for him.

One of the kids actually tried this maneuver a couple more times and I finally grabbed a hold of his arm and told him he needed to just cool it, it wasn’t his turn. Where the hell are the parents of these kids? Who is teaching them anything about taking turns and sharing?? Is this the kind of generation of “typical” kids our society is raising?

OK, end of rant. Anyway, Nik had a wonderful time and was oblivious to the whole turn-taking thing. Was I too sensitive? Did I do something I shouldn’t have done? My instinct says no, but my conscience isn’t so sure.

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Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!

In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!

I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?


We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!

You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!

So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:

I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!

Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)

So, there’s our dirtly little secret. Hee hee hee.


Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.

Oh, sorry, where was I? Right, school.

I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.


Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.

It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.

I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.

Today, life is sweet.

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