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Archive for the ‘miscellany’ Category

Well, I’m finally starting to catch up on some housekeeping items both IRL (in-real-life) and here on my blog. That post about Nik’s continuing awesomeness is in the works and should be up soon. Meanwhile, here are some lovely awards I’ve been given recently that I’d like to pass along.

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First off, I am embarrassed to admit that pixiemama gave me this thoughtful award**a while back; I bookmarked it and then forgot to follow up. (Oops…does that negate my qualification for the award??)

Before anyone has a chance to speak up and tell me that it does in fact disqualify me, I’d like to pass it along to some other special and thoughtful women. I don’t know if they’ve received it or not; if they have, well, they doubly deserve it then!

Joymama over at Elvis Sightings always manages to touch my heart in some way; She also, I think, shares some of my glass half full attitude about parenting and the world of special needs. Her daughters are a delight and I often find myself wishing they lived near enough to get to know in person.

My dear cyber friends Kyra and DramaMama both share amazing insights in beautiful ways; they also find so many ways to express their love for friends and family and fearlessly share their passion for living life to the richest and fullest —no matter how it might look in any given moment.

Gretchen is one of those bloggers who kind of flies under the radar but I always find myself either thinking or feeling deeply after reading her posts. She’s another one of those women I wish lived closer so I could get to know her better.

Pam, Rhett’s mom, shares the ups and downs of life with her family and parenting children with and without special needs. They’ve had a rough time over the past year or so but she nearly always manages to bring the focus back to the gifts and joys that her family brings. That always puts my heart back in the right place!


The second award was recently given by the awesome Autistic Bitch From Hell, affectionately known as abfh. I was thrilled she thought of me because, well, I love her blog! She writes funny, snarky, always insightful posts about civil rights, neurodiversity, and life over at Whose Planet Is It Anyway?

I’m supposed to pass it along to seven other blogs that I love but there are so many of ’em; it’s too hard to choose! Let’s see, there are some of my tried and true faves such as Mom-NOS, Kristen, Jennifer, Vicki, and Joeymom (ooh, she already got this one, darn!). Then there are some blogs that I’ve recently discovered or who don’t necessarily shine their light out from under that ol’ bushel…

Christine writes about life with her family which includes two adorable sons —one with autism and one without. She’s another homeschooling mama like me and I learn so much every time I read her posts.

I love reading Marla’s blog too. She writes about everything from life with her daughter, Maizie, and it’s inherent challenges to birthday parties for hamsters (or are the guinea pigs, Marla??). In addition to the gorgeous pictures she takes and shares, Marla writes with such clarity and depth that I always go back to re-read things to make sure I haven’t missed a smidge!

So there you have seven to check out if you don’t already know them! And, of course, for many, many more than seven fabulous blogs, pop on over to the Autism Hub. You’ll be glad you did.

**[This lovely award is created by Crystal @ Memoirs of a Mommy in honor of Noah and the donor of his sweet little heart who ENCOURAGES us to SHARE THE LOVE ! Thanks Crystal! (Click on Memoirs of a Mommy to learn and read this special love story!) The rules for this award are to pass it along to some people whose blogs you love. They make you laugh, smile, leave encouraging comments on your blog. You would like to share some love with them because they have uplifted, inspired, encouraged or prayed for you. Please include this paragraph with the link to Memoirs of a Mommy so that everyone will know where this award originated.]

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Sucked Under

I’m here. Honest, I am. I’m nearly recovered from my sister’s beautiful wedding; it was a very special time full of surprises like the arrival of cousins we haven’t seen in more than ten years, and making new connections with family we thought was completely cut off from us. (It’s a long story involving divorces and family conflicts which go back to a prior generation.)

Anyway, things are moving along at quite a rapid clip in our daily life. Nik is doing phenomenally well and I promise to write about it soon. Niksdad is also doing well; he just got another “A” in his classes. I’m quite proud of him; I truly think he may be up for valedictorian of his class at graduation in May 2009!

Me? I’m still recovering from the wedding. More accurately, from all the food and drink that have totally thrown my body into a state of distress. To make a long story short, I’m not diabetic but I have some insulin resistance stemming from polycystic ovaries (PCOS). Every once in a while I con myself into thinking that I don’t need to be careful about what I eat and drink. HA!

I’m trying to rid myself of the evil sugar/refined carbs monster which has taken over my brain and body and left me in a stupor.
I suppose it doesn’t help that Nik is teething now, getting molars, and has been waking at night in pain. Once the Advil kicks in and the pain is gone, he is wide awake and wants to play until all hours. Last night was 10:45 p.m. to 3:00 a.m. His sleep cycle is out of whack, mine is too and it just seems so hard to cobble together enough coherent thought just to make it through the day let alone try to write a blog post.
I’m getting back to my normal self bit by bit and resuming my workouts with my sister. That should all help…I hope!

Meanwhile, I leave you with this belated Wordless Wednesday image. I call it “Fantasies DO come true!” (Note for my visually impaired readers; it’s a silhouette image of Niksdad holding Nik in his arms and standing with the vacuum cleaner! LOL —Yes, he actually used it, too!)

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Today, God gave me a reminder about the unexpected joys and miracles we can find if we but take the time to look at things in a different way.

Our new little friend is so tiny that it’s head is roughly the size of a small plum and it’s entire body could fit in a small soup bowl.

I guess the other lesson for me here is about letting go of what things should look like or how they should proceed; Baby bunny is laying smack-dab in the middle of a cluster of iris that I really need to dig up and separate. Guess it’s just going to have to wait; bunny is still very young —Niksdad estimates roughly two weeks old— and its mama comes at night to feed it. If I touch it at all it could cause the mama to abandon her baby and he might die.

No amount of pretty flowers and lovely landscaping is worth that cost.

Happy (early) Earth Day!

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Easter Surprises

Seems the Easter flu is going around. I knew Nik’s raging fever couldn’t be from a simple ear infection. Now he’s coughing and has a runny nose…and has shared his bounty with me, too. Sigh…won’t be many festivities in our house tomorrow. Oh well.
Hope yours is joyful and full of wonderful things
Chocolate bunnies are a bonus!

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Just an ordinary day

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It’s beginning to feel a lot (more) like Christmas, everywhere I go. In keeping with the holiday spirit, I’ve decided to jump on the bandwagon and share my Christmas meme-ories with you. Thanks to Kristen for the inspiration!

Part I:

What are your three favorite Christmas songs and who sings them?
I’d have to say I am rather a purist when it comes to my favorite Christmas music; my tastes run to the classical and traditional. I’m not a big fan of all the pop stars’ versions of timeless classics. I like to hear O Holy Night, I Wonder as I Wander, or What Child Is This? done by someone like Kathleen Battle (in her pre-Diva-from-hell heyday she was my all time favorite), or groups like the Mormon Tabernacle Choir.

That said, I have found some newer, more contemporary, Christmas songs done by the likes of Bette Midler, Josh Groban, and Amy Grant that I really enjoy, too. I love all kinds of authentic Christmas music (meaning not glitzed and glossed beyond recognition); just don’t mess around with my classics, ok?

My all time favorite isn’t exactly one song –it’s an entire opera. Amahl and the Night Visitors is a simple and beautiful telling of the miracle of selfless love on Christmas Eve, as told from the perspective of a poor widow and her crippled son. It has the power to make me ache and weep, sing and dance, laugh and rejoice each and every time I hear it. Christmas isn’t truly Christmas for me until I hear Amahl.

What are your three favorite Christmas foods?
Well, that sort of depends on where I am. As we’ve gotten farther away from the nuclear family and become spread far and wide, I think we’re losing touch with traditions I grew up with. As a child, I remember big turkey dinners complete with stuffing and cranberry –and homemade pies; it was kind of like Thanksgiving but with presents! When my husband and I got married, we continued one of his traditions –making krumkake, a Norwegian cookie that his grandmother used to make. This year, we’ll be having lamb at my parents; we won’t have pie or krumkake but will start a new tradition of homemade eggnog ice cream with gingerbread.

In spite of the changing traditions, there are a few timeless favorites I enjoy. I love a good eggnog. Yes, that fatty, thick, gooey, sweet elixir –with or without the spirits added! Gingerbread, thick and hot from the oven –served with warm lemon sauce makes it even better. Homemade iced sugar cookies. I don’t make them myself because I don’t have the patience to decorate them. But I do appreciate a good sugar cookie.

What are three Christmas secrets?
I can’t think of a single one. Well, except that I like opera and eggnog…but I already spilled those beans, huh?

What are your three favorite Christmas movies?
It’s a Wonderful Life; Zu-Zu’s rose petals, Clarence, the bells, George Bailey…can’t get enough of ‘em. Call me a sappy sentimentalist.

How the Grinch Stole Christmas –both the animated and the live action versions. It’s a great story full of humor and redemption.

The Santa Clause. Tim Allen in his prime. And I still believe in Santa, too.

Part II:

What is your least favorite holiday task?
Wrapping all the presents; they always seem to multiply the night before I start wrapping!

What is the worst gift you have ever received?
I should be all PC here and say “Oh nothing, they’ve all been wonderful, given in the spirit of love, blah, blah, blah…” but the truth is there have been some really weird things given to me over the years by my mother-in-law. (It’s okay, she doesn’t read my blog. If she miraculously finds it, well, she needs to know these things.)

The absolute worst was the year my husband and I had moved into the first home we had purchased. For some reason, my MIL –who has never taken much time to get to know me and what I might enjoy –decided that I really loved to decorate with the color purple. And mirrors —painted with swans. I think that gift spent a long time in the closet of our guest room until it finally got broken in our move back east. Damned careless movers…

For the record, I have nothing against purple; it is a perfectly lovely color –for fruits, clothing or gemstones.

Who is the hardest person in your family to shop for?
That would be a toss up between my father and my husband. Neither one ever has any idea of what to ask for; they never need much in the way of clothing or things like that –the polar opposite of my teenage neices. And their wish lists usually include very large, very expensive “toys” (mostly tools) that no one can either find or afford!

What relative do you dread seeing at the holidays? Or, when you were a child, what relative did you dread seeing?
I am actually ashamed to confess that I dread seeing my in-laws. It’s always awkward when we do see them. That might have something to do with the fact that my MIL is very uncomfortable with Nik’s disabilities. I think she truly loves him in her own way but doesn’t know how to just BE with him and see past the disabilities to the incredible child he is. She ends up meddling in an effort to find solutions to “fix” him and it just pisses me (and my husband) off. I bite my tongue and let it wash over me in the moment but it makes me sad and angry and the bitter taste lingers.

Fortunately, we don’t see them that often; the last time they came to visit was nearly 18 months ago. That’s a factor, too; they live a mere three hours away and have only seen Nik three times since we moved back east in 2005.

What holiday tradition would you eliminate if you could?
Um, visiting in-laws?? Just kidding; if I did that then we wouldn’t see my parents either!

If I had the power to make it so, I would make it illegal for retailers to put up Christmas decorations before Thanksgiving. I get so sick and tired of the crass commercialism of the “holiday season.” The significance of the actual holiday –regardless of the religion or holiday one celebrates –becomes minimized and marginalized to the point that people aren’t sure what’s okay to say to one another.

What do you swear, every holiday season, that you’ll never do again, only to find yourself doing it again the next year?
Waiting until the last minute to wrap gifts. Eating too many cookies while I bake them. Sending Christmas cards late. But hey, why break with tradition, right?

What are your traditions and favorites?

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“Christmas, weddings, funerals, graduations, retirements, and births are like speed bumps in life; we slow down, look around, think about our lives, and then once over the bump, we speed up to our usual pace. ~ Allen Lagarbo

It’s been a very full week what with Nik’s multidisciplinary evaluation by the developmental pediatrics team on Wednesday morning, followed by an unplanned visit to the GI clinic to have his g-tube changed. Don’t ask me how but Nik’s actual tube —the part that goes into his stomach and to which I attach an extension tube for each meal —broke. Uh huh. Literally came unglued. But I’m getting ahead of myself…

Oh tidings of comfort and joy,
Comfort and joy!
Oh tidings of comfort and joy!

God Rest Ye Merry Gentlemen (author unknown)

Tuesday morning was our last play group until after New Year’s; it was a warm and fuzzy morning in which Nik played and laughed and made a Christmas ornament which moved me to tears. Well, I suppose I should say he lent his assistance (cooperation?) to the process. The end result is something that only a parent or grandparent would ever appreciate and think was worth ten times more than any gold-plated la-di-dah from a swanky store. But it is incredibly special to me.

The herculean effort I know it took for Nik to allow his hands and foot to be traced —the sensory processing, the cooperation and sitting still — along with the monumental feat of Miss D actually getting a picture of Nik (almost) sitting still? Let’s just say the heavens must have lent a little help in this case.

I cried not only for the fact that my son helped make it, or that Miss D and Miss T are so thoughtful as to have even come up with the idea in the first place. No, I cried because it reminded me of how tiny Nik was when he was born; he was so tiny and in such distress that we never got his footprints on his hospital birth certificate. The closest thing we have is a set of footprints taken when he was one month old. The prints are still minuscule but they aren’t the same. Somehow the hand and footprints done Tuesday represent a birth of sorts and I’m happy to have something to mark the passage.


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“Christmas is a necessity. There has to be at least one day of the year to
remind us that we’re here for something else besides ourselves.”

~ Eric Sevareid
(1912-1992), American newscaster.

Wednesday was the antithesis to Tuesday’s warm fuzzies. Nik’s evaluation didn’t go as well as I had hoped. The team was wonderful and I like and respect each of the professionals., but Nik was simply all over the place and almost completely unable to maintain any sort of focus for more than a few seconds at a time. Nik’s balance was really off kilter, he didn’t cooperate even when I sang the transition or cue-songs we usually use, and Nik didn’t respond to his name at all. The door perseveration was working overtime and Nik kept trying to run out into the hallway —clad only in a shirt and his pull-up diaper!

Each member of the team spent some one-on-one time with Nik and then talked with me at length about what I hoped to have happen as a result of the evaluation. I suppose from that standpoint, the fact that I wanted them to recommend an increase in Nik’s therapies, we may have achieved one of our objectives; their report will be finished early next week and then the developmental pediatrician will call us to discuss it with us. Until then it’s a waiting game.

The hardest part for me was watching Nik struggle so badly. I realize now that he had not had sufficient time to acclimate to the environment. Nor had I taken the time to do any brushing, joint compression, or firm pressure and rocking —all of which I know helps Nik calm and center a bit more. Hindsight being what it is, I can see now that I should have simply asked the team for a few minutes to do that before they started. The lesson here is for me to stay focused on Nik’s needs and not worry about the other people; they’ll take care of themselves just fine.

By the time the team was finished, it had started to snow and Nik and I still had a little more than two hours to wait until his afternoon appointment with the advanced practice nurse in the GI clinic. It was not part of the original plan to have Nik’s g-tube changed but it broke on Tuesday! I didn’t think it was even possible —but this is Nik we’re talking about. We did stop to see if she could see Nik sooner but the part she needed hadn’t arrived yet; she expected it just after noon. So off we went, dashing through the snow, to the nearby mall to visit Santa.

My first clue that Nik wasn’t feeling well should have been in his refusal to walk more than a few steps at a time. I finally ended up carrying all 32 pounds of him, along with our coats, nearly the entire length of the mall and back—having missed the fact that Santa was actually tucked away in an alcove near the center of the mall. By the time we got to the Clauses, Nik and I were both spent. It pretty much shows in Nik’s face in the photo.

We returned to the hospital and managed to get Nik’s tube changed earlier than scheduled. Yay! Someone remind me next time to take a change of clothes for Nik; apparently he hadn’t finished digesting his breakfast from several hours before and it got more than a bit messy. Poor little guy had to suffer insult on top of injury when he came home in a hospital gown instead of his big boy clothes.

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Thursday was pretty low key —if you don’t count the faucet which began running from his little nose, followed by the coughing, the facial rash, and finally the fever. All this wrapped up in a pretty package of multiple episodes of unexplained pain which has morphed yet again into something slightly different and slightly more intense than it was before. We’d actually gone a few days without any significant episodes so I guess we were due. And, I’m finally over my tracheitis and Niksdad is healthy, so I guess it was Nik’s turn again.

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“Christmas gift suggestions: To your enemy, forgiveness. To an opponent,
tolerance. To a friend, your heart. To a customer, service. To all, charity. To
every child, a good example. To yourself, respect.” ~ Oren Arnold

Yesterday was one of a few bright spots in the week as we saw the good Doctor Mary. In spite of not feeling well, Nik was very good for Doctor Mary. Except for “the snots,” he actually got a clean bill of health —and two shots which we weren’t expecting —the Chicken Pox vaccine and a Polio booster. We got off the hook for the MMR and DTaP shots as Nik has had both of those —albeit before his fourth birthday— as part of some immunology testing a few months back. Since he’s not currently in school we can let those shots slide for a while. Whew! Fortunately, Nik has (knock wood!) never had an adverse reaction to any of his shots.

This was probably the longest appointment we’ve ever had with any doctor and it was incredible. Both Niksdad and I really, really like Doctor Mary; she’s very personable and has a great “bedside manner.” She’s also wise enough to know her limitations and recognizes when a change in tactic is in order. It’s disappointing —yet oddly reassuring— that the “fabulously brilliant neurologist” never returned her calls either. We are seeing the new neurologist on the 30th of this month; Doctor Mary says she has met him and has also heard lots of good stuff from some of her patients’ parents about how approachable and accessible he is. I am encouraged.

We also got the inside scoop —highly favorable— about the diagnostician we are seeing on the 21st. Doctor Mary knows him personally and told us he is incredibly thorough and thoughtful and open-minded. Niksdad and I are eager to meet him. She warned us that he doesn’t say a lot; he listens and processes and ruminates. Sounds just like Dr. House —without the drug habit and the surly “everybody lies” attitude. Which, I must confess, I think is very sexy and entertaining on TV. But when it comes to my kid? NOT A CHANCE IN HELL.

We’re still investigating the issue of intermittent increases in intracranial pressure —including one highly unusual potential cause which was brought to my attention by a reader who emailed me with some very useful information. We’ve gotten used to having some of our ideas and theories dismissed by so many doctors —often to discover that we were, in fact, on the right track if not necessarily entirely correct— that it is refreshing to find Doctor Mary listening and asking for our opinions. As she acknowledged yesterday, some of the things we’re wondering about may seem highly unlikely. But all those rare conditions which something like six people in the world have? Well, someone’s got them so it is possible. We just want to rule out every possible cause before we simply accept that Nik’s recurring and increasing pain is behavioral or something we can’t fix. After seeing the video of some of Nik’s more recent episodes, Doctor Mary agrees that there has to be a physiological root. Let’s hope the diagnostician can unearth those roots.

So, I guess it’s really been a mixed bag around here this week. In spite of the illness and trips to the hospital in the snow, I’ve managed to get some holiday baking and candy making done —in those brief windows between Nik’s bedtime and mine, while Niksdad studies for his exams next week. That has helped to provide me with some creative outlet and a bit of zen feeling from the actions of cooking which have always soothed me. I’ve made literally dozens and dozens of cookies —of the chocolate and nut, chocolate and butterscotch, and mint chocolate variety— and my “famous” (ha ha) chocolate covered almond clusters. I’ve ventured into new territory and made some yummy pumpkin-cranberry mini loaves and star-shaped muffins. Today, I’m actually going to make my easiest and most favorite holiday treat to make —peppermint bark. If Nik is having a good day, I may even make my microwave toffee…

Then, I will divvy it up, package it, and write my holiday letters to mail to the hospitals where Nik spent so much of his first year. Though we no longer see them, the doctors and nurses, social workers and chaplains are firmly woven into the fabric of our family. To not send them something would be like forgetting to give my mother a gift!

Friendship is a precious gift to give at Christmas time. A Cherished gift, a treasured gift that lasts through all time. ~ Unknown

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So here we are on Friday…playing hooky from school since we apparently need to sign an IEP to officially remove Nik from school. I haven’t returned school’s calls yet; I am waiting to talk to the person from Legal Aid to determine the next steps which will protect Nik. I also got a message yesterday from “Nurse Nosy” from school. Thank goodness for caller ID; I let the machine get the call. Her message was a chatty but brief “How are you?” and “What’s going on?” Funny, she didn’t bother to call at all during the ten days Nik was actually ill. Fishing for information much? Yeah. Oh, sure, I’ll call her back…right after hell freezes over.

But enough of that rant. Today I have random thoughts and stuff to share.

I usually delete all the Autism Speaks emails I get. Today, for some reason, I checked it out and found a link to an interesting RAP video. It’s made by a young man who works with autistic adults in New York. I couldn’t find a lot of information but it appears that he is a licensed professional who works in an institutional setting. It’s an interesting video. On the surface, I don’t necessarily agree with some of the choices he makes to describe autism. But then again, if he is working with an institutional population he may see more of the extreme end of the spectrum than I have. None the less, I think his message is heading in the right direction —no mentions of cures! It’s worth a look. Check it out and share your thoughts. You can find the video HERE.

On another tangent, I’ve not yet had the chance to read the wonderful book which Kristen sent me —What You Can Do Right Now to Help Your Child With Autism. That’s on my nightstand to start this weekend. I’ve also reserved a copy of John Elder Robison’s Look Me in the Eye at my local library and can’t wait until it’s available. Some other lucky person currently has the one copy available in my county. Yes, Delaware is a small state.

Meanwhile, Nik seems to be doing so well since he’s been home from school. I’ve already written about that in a few other posts. I have been trying to capture this on video but Nik is very aware of the camera and tends to either clam up or come right to the camera to play with it. So, it’s a little late for Wordless Wednesday but here is a quick clip to give you an idea of what I’ve been hearing more and more of these days. It’s becoming more consistent and ubiquitous —as Nik plays in the family room, during his PT and OT sessions, in his crib, at the dinner table, in the car. The boy has lots to say in his own unique and beautiful way.

I’ve had so many ideas for some posts inspired by other blogs. Alas, I haven’t written them down and they are gone for now— crowded out by all the recent events and concerns with school. If they return I’ll share them. If not, just know that those of you whose posts I read regularly inspire me to thought and action throughout the day.

Happy Friday.

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