Lest you think it’s all misery all the time around here lately, we’ve got new signs and sounds coming along! And Nik becomes more affectionate; less discriminating, apparently, but definitely more affectionate!
Just sharing the love!
Lest you think it’s all misery all the time around here lately, we’ve got new signs and sounds coming along! And Nik becomes more affectionate; less discriminating, apparently, but definitely more affectionate!
Just sharing the love!
Oh my. These two posts today have got me in a very serious frame of mind —not in a bad way, just in a way that I would prefer not to think about just yet. So, in my campaign of avoidance of issues which make me cry and/or feel my mortality too keenly…
Joey’s mom tagged me recently for this meme of five things. I am delighted to procrastinate on contemplating my mortality (or that of those around me) and happily share this with you instead!
Five things found in your bag:
Wallet chock full of plastic cards for every conceivable purpose —many of which have nothing to do with actually paying directly for anything —and a picture of my son and my husband.
Cell phone with far more pictures and videos of Nik (and his daddy) than telephone numbers for people I ever talk to; it’s my portable memory book.
Eyeglass cleaning kit for the reading glasses I never seem to remember to take with me anywhere.
Empty business card case. Though I don’t have an actual job which requires business cards, I made some up for myself to make it easier to exchange information at conferences and workshops. I gave the last one out at Tuesday’s meeting to a visiting parent who was looking for some local support.
Pens. Lots and lots of pens. I seem to attract them for some strange reason; never mind that I rarely have anything to actually write on in my bag!
Five favorite things in your room:
I am currently in my loft so I’ll go with what’s here —
My entire CD collection which ranges from Annie Lennox to Enya to ZZ Top with a very healthy dollop of Chopin, Tchaikovsky, Mozart, Sondheim, Frank Loesser, Gershwin, Glen Miller, and a whole host of every genre of music (except gangsta rap). One might call my musical tastes eclectic —or schizophrenic.
My small and equally eclectic collection of antique books. If I had the space and funds it would be a much, much larger collection —preferably housed in a large English manor somewhere, in a library with floor to ceiling shelves and lots of quiet nooks for reading or napping. My most prized specimen was an original copy of Elizabeth Barrett Browning’s Sonnets from the Portuguese (1850) which I was foolish enough to take that to college with me; some schnook stole it. The works range from Twain to Dostoevsky, Hegel, Kant, Spinoza, and E.B. White. Among my favorites are leather-bound, gilt-edged works by Thackeray, collections of essays by Ralph Waldo Emerson published the year before his death in 1882, an English translation of the Koran published in 1880, and John Greenleaf Whittier’s Among the Hills (1869); many of these once belonged to my Nana Cook whom I adored. Also included in this treasure trove is a small representation of lighter fare such as Louisa May Alcott’s Under the Lilacs (1887), A Spinner in the Sun (1906), Minkie (1907), and Persis Putnam’s Treasure (1908)—all of which once belonged to my paternal grandmother, Momo. Mostly suitable fare for a young woman brought up in a modest Quaker home just after the turn of the Twentieth Century (she was born in 1897). I remember reading some of these books as a young girl when I would visit my grandparents at their summer home in Cape May, NJ. But my favorite —the book which I still take down periodically and ever so gently turn its pages —is Longfellow’s Song of Hiawatha published by Bobbs-Merrill in 1906 with exquisite illustrations by Harrison Fisher. This, too, belonged to my Momo.
Most of these books are not worth a lot except to me; they are a scant yet tangible connection to my family history. Most, if not all, of these books belonged to cousins or aunts and uncles of my grandparents’ or great-grandparents’ generations and were lovingly gifted between them with inscriptions in spidery copperplate. I cannot explain it but I feel a strong connection to these remnants of lives long passed; as if these books might speak to me and tell me more about the people on my family tree.
Framed photographs I took of the ocean crashing onto the rocks as the tide came in on the beach in Davenport, CA. I used to love driving down Route One with the sunroof open, music blaring, the wind whipping my (then) long hair into dark tangles dampened with salt to arrive at this quiet little cove. I’d wander along the water’s edge finding shells and stones as I waited for the perfect inspiration —photo or otherwise. It is this same beach where Niksdad and I often stopped to stretch our legs while out for a ride on his Harley. Sometimes we would make it a destination for a romantic picnic or a special way to celebrate Easter morning at sunrise. I’ve always felt a strong connection to the ocean; I don’t think I could live anywhere that I wouldn’t at least be able to drive to it within a couple of hours.
A small cedar box which contains the ashes of my beloved cat, Tasha. She chose me when I was in college in Louisiana. This tiny little gray and black and white tiger striped kitten climbed up my pant leg and nestled into my arms; she stole my heart immediately and irrevocably. We grew up together, Tasha and I. She slept under the covers with me, shared Kalamata olives with me, and was my backup alarm clock when I hit the snooze one time too many and her breakfast was late.
She moved with me from Baton Rouge to Boston to South Jersey, Philadelphia, and New York City. She was an intrepid cross-country traveler as my parents drove me from Delaware to California in an RV when I moved to San Jose in 1998. Settling in California, Tasha and I rounded out our seventeen years together until she grew too ill, too old and frail to survive another move. Tasha always had impeccable instincts about men —Niksdad is the only one she ever took to. I often wonder if she held on long enough to make sure I was going to be okay; she died in my arms in the middle of the night just weeks before my wedding in 2001. I miss her every day.
Rocks I collected on a trip to Nova Scotia one year —another exciting RV excursion with my parents. We visited the Bay of Fundy—one of two places in the world to experience the phenomenon of tidal bore — and walked out into the actual bay while the tide was out. The specimens we collected were exquisite! The rocks are small talismans I keep on my desk to remind me of the forces of nature, the strength of family, and that time can smooth out many hard edges.
Five things you have always wanted to do:
Visit the British Isles; I’d love to rent a small country cottage for a summer and really soak up the countryside.
Sing at La Scala or The Metropolitan Opera in NYC. I came close in a six-degrees kind of way; I once studied voice with McHenry Boatwright who once sang at the Met. I also studied with Luba Tchereseky who was, allegedly, blacklisted at the Met and so, subsequently, were her students. I did, however, once sing in a recital here.
Learn to play the guitar.
Sing professionally with a band performing music of the big band/swing era. Hey, Nik’s first home-PT experiences were often to the music of Glenn Miller or Tommy Dorsey!
Learn to draw and paint.
Five things you are currently into:
Being the best mom I can possibly be to Nikolas.
Learning to take better care of myself.
Planning my summer household reclamation project (aka figuring out how to dig our way out from under all the junk we seem to have accumulated but not found a place for)!
Learning as much as I can about Augmentative Communication so I can help Nik with his communication efforts.
Trying to find the time and energy to write more regularly.
Five people you’d like to tag:
Marla and Maizie, Jenn, Delilah, and Angela.
“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.
Nik exhausted himself in the fresh air and sunshine. His favorite things were the sandboxes —total sensory delight, and the animals.
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.
Well, that’s my long-winded explanation for how I got Niksdad to take us out to dinner tonight. Not a date, though we have one coming to us soon I think. Rather, a nice family outing —something we haven’t done in a very long time. In the past, such outings were not very enjoyable for any of us; Niksdad and I spent the entire time marshalling the toys Nik would propel halfway across the aisle —oblivious to the glares of other diners. Or Nik would get fussy and squirmy from the lights, the noise, the time of day…
Since we’ve been on a roll lately, we decided to chance it. We planned our outing with military precision. Pump? Check. Syringe and tube? Check. Meds? Check. Sippy cup? Check. Mesh feeders? Check. Toys? Check. Forward march! And off we went…to Applebee’s for an early dinner. And it was a pleasant experience! OK, except for the part where I smashed the tip of my finger under the seat cushion of my broken chair. No blood; I’m fine (sniff, sniff…rolls eyes dolefully).
Nik was amazing throughout the entire dinner! He was alert and fully engaged in the environment and with us. That is not something I have ever been able to say about previous dining experiences. I did brush Nik and do joint compressions before we left the house; maybe the sensory input helped him regulate himself better? Or, just maybe, Nik has made another developmental spurt.
In any event, Nik sat much like any other 3 or 4 year old in a restaurant. He was very well behaved —only threw one thing and that was a teething biscuit that he decided didn’t have enough flavor to suit him! He “nibbled” (ha! Ok, licked) the teething biscuit alternately dipped in salsa and in the horseradish sauce from our onion rings. (Yeah, it’s a good thing I’m going to the gym tomorrow morning!)
Yeah, we got some odd stares from people around us. Not so much disdainful looks. More like curiosity about the little boy with the tube running under his shirt. The boy who was so obviously having a grand time with his parents. Wondering, perhaps, what is “wrong” with him? Wondering perhaps what is wrong with his mother that she keeps talking to him like he’s done advanced calculus on the back of his napkin? Who knows? Tonight we couldn’t have cared less what the rest of the world thought.
Tonight, we were “just another family” and it felt grand.
Aptly named, she thinks everything is a source of wonder to be explored and has gotten into trouble by opening many a box!
However, there was the time last summer when one got into our family room…Niksdad tells me it was a pretty funny sight and he had to rescue ol’ Sal.
She’s an indoor cat, but she’s a helluva huntress!
UPDATE 8/29/07 — I love the internet! Thanks to Melissa, I learned something new! The creature in the picture above is not a salamander; it is a skink. Who knew?? (Well, obviously Melissa did. I’m guessing it has something to do with an interest of her son, Conor, perhaps?). Not only is it a skink, it’s a young one! Whatever, my cat sure thinks it looks like one tasty treat; I’ve read confliciting reports that skinks can be toxic to cats or that they are not. No matter, Pandora will remain “skinkless” as long as I have anything to say about it!
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.
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.
Yes, definitely an occasion to be repeated every year!
Posted in ASD, autism, behavior, blogging, connection, couples time, disabilites, family, fun, good mojo, marriage, OT, parenting, progress, PT, special needs, therapy on August 5, 2007 | 7 Comments »
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.