Archive for the ‘multiple disabilites’ Category

Celebrate good times, come on! (Let’s celebrate)
Celebrate good times, come on! (Let’s celebrate)

There’s a party goin’ on right here
A celebration to last throughout the years
So bring your good times, and your laughter too
We gonna celebrate your party with you

Come on now

Let’s all celebrate and have a good time
We gonna celebrate and have a good time

It’s time to come together
It’s up to you, what’s your pleasure

Everyone around the world
Come on!

Yahoo! It’s a celebration

Celebration ~ Kool & The Gang

Lots to celebrate here this week!

Our anniversary. Hurray! Niksdad and I actually got to go on a date on Friday night —candles, wine, good food, and a drive in the country to reminisce about the wedding night we spent in this quaint little bed and breakfast. It was really wonderful to reconnect and relax. Of course, we did talk about Nik’s CT scan results —a lot. But we had a lovely time. I think it was the first time we’ve been out for a nice dinner (and without Nik!) since before Nik came home from the hospital. Hmmm…I think we need to get out a bit more, don’t you?

Family. In my family, the span from Mother’s Day through the Fourth of July is insane. In addition to the Mother’s Day/Father’s Day/Independence Day celebrations, we have eight birthdays and four anniversaries. So, this past Sunday we got together at my sister’s for a family barbecue and pool party. This year, to add to the excitement, we also celebrated Niksdad’s passing his LPN board exam, my eldest niece landing a great internship she’s been hoping for (in the music/recording industry), and my sister’s engagement! It’s her second time around; we all really, really like the guy she’s marrying. I especially like him because he adores Nik and makes sincere efforts to meet him where he is. He doesn’t ever ask stupid or insensitive questions and he’s always willing to lend a hand watching Nik so we can eat, swim, or whatever it is that everyone else is doing that we usually sit on the sidelines. He’s a great guy and I’m very happy for my sister.

Changing Insurance for Nik. Hey, this is a biggie! We changed managed care organizations (MCO) through Medicaid and have recently discovered some pretty nifty perks. Our pediatrician is apparently rated as a “gold star provider” which means that any referrals written by her do not require any authorization. That’s right —NONE. So those prescribed twice weekly PT and OT sessions which the previous MCO denied on the basis of “Nik should be in school so school would be providing these services” (never mind they’ve been deemed medically necessary and truly are)? Covered without a blink of an eye. We start our new schedule with Miss D and Miss T in just a couple weeks and we are all so excited to see how Nik blossoms even more as he gains new skills.

Nik is thriving and happy again at PT/OT. Don’t know what the turning point was but Nik has now decided he loves PT and OT again. No more tears. In fact, yesterday we couldn’t get him to leave! He actually ran away from me when I told him it was “time to go zoom-zoom home.” He’s been so much more engaged and lively; he’s really been seeking interaction with people so much more lately.

Our visit to the ENT today. You know, sometimes we get so accustomed to all the weird, unusual things that go on with Nik (well, okay, in our defense his history is pretty chequered!) that we tend to see bogey men everywhere we turn. And, given the questions we’ve been asking for a year now about Nik’s head pains and ear problems, it was a natural leap to make when Dr. Mary called on Friday afternoon. But this time, it really isn’t a big deal after all. Normal, ordinary childhood ear stuff.

Turns out that none of us knew Nik’s myringotomy tube in his left ear had worked its way out (which is normal) quite some time ago. Unfortunately, Nik also has a significant propensity toward fluid build up in his left ear. And his adenoids. In other words, as the doctor put it today, “If you do a scan on a kid with a snotty nose, stuffy sinuses, and fluid in his ears, you can get a scary looking scan. But you have to look at the clinical presentation, too.” No signs of infection —whew! But then, we kind of already knew there was no infection.

So we’ve discontinued the nasty antibiotic. Not a moment too soon, either, since it’s begun having awful gastric side effects after just a couple of days! But we are looking at surgery to put in new tubes and to remove Nik’s adenoid. It’s not a guarantee that Nik won’t have pain or ear infections —there is so much surrounding the ear that it’s possible the pain is actually referred from somewhere else —but it will most likely minimize the snotty sinuses and will help with Eustachian tube function so the fluid shouldn’t build up so much. It’s not a magic answer —we didn’t expect one— but it does give us a measure of comfort we didn’t have before. Niksdad and I agree; we would rather have this surgery than put Nik on yet another medication which has significant long-term repercussions and side effects.

And, frankly, since we’ve decreased his daily Depakene level by a third, we’ve seen such a tremendous shift in Nik’s attention span and level of interest/engagement that we are loath to give him something which might dull his senses again. We really enjoy the little boy that is starting to emerge and can’t wait to see how he does as he begins to feel better.

As for all this celebrating? I feel a bit rusty at it but I’m sure I’ll get the hang of it again.

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When I was a much younger woman —in my wild and impetuous days as a single gal in NYC— I had a friend, Anne. Anne was roughly a dozen or so years older than I and was a single mother raising two young pre-teen boys. Though Anne was far from perfect —she reveled in being right about things (and she usually was) — she had a heart of gold and a righteously protective streak a mile wide. She would offer me the shirt off her back, the food in her cupboard, and a soft place to land when my world came crashing down around me. She was also the first to stand by a friend in need —“fighting the good fight”— or to teach that same friend how to stand up for herself. We lost touch a number of years ago through simple neglect; our paths diverged so greatly after the birth of my son, the geographical distance between us, and who knows what else.

Anne always had a habit which annoyed me to no end; every time we would go out to eat, she would ask me if I wanted to “join the sharers club.” She always wanted to share whatever we each ordered; I, on the other hand, never wanted to share. Call it miserly, greedy, thrifty —I was, after all, a single woman living alone and pinching pennies in a very expensive city— but I really got annoyed. Anne never took it personally though. She would simply smile and say, “Aw, sweetie, you don’t know what you’re missing. One day you’ll realize the joy of sharing.”


Amid the clatter of emptying the dishwasher —Nik’s laughter echoing through the playroom and into the kitchen— I hear the sound of uneven footsteps and the banging of a heavy object as it bounces along the floor. I turn to see Nik dragging one of his new toys over to the kitchen gate. As he hoists his little cash register toy up over his head, I fly to the gate to keep the toy from crashing to the floor. Nik stops mid-toss and laughs. “Are you all done, buddy? Do you want Mommy to take your toy?” I should know better than to ask a question like that; Nik doesn’t have the communication skills to answer such a query.

I take the toy from him and begin to place it on the armoire near the telephone —still in sight but safely out of reach. Nik begins to vocalize something and gestures at the same time —tapping the fingertips of his right hand into the palm of his left as if he’s making a “Tee.” My eyes widen in surprise. Am I seeing what I think or is it just a coincidence? I’ve seen Nik do that gesture before but assumed he was just copying the video and didn’t really understand the concept.

“Sweetie, do you want to share the toy with Mommy? Is that what you want? You want to play with Mommy?” Nik emphatically begins to pat his palm against his chest —his universal sign for “Yes, please. I really want it.” How could I possibly resist such an entreaty? Picking the toy up from its high perch, I carry it to the sofa and ask Nik to join me. He squeals as he races to the sofa and settles in so close to me that I have to put my arm around him so I don’t accidentally elbow him in the face as we play.

For fifteen minutes we share. We take turns and sing songs. Nik makes free with his kisses —a rare treat lately since he’s becoming such a Daddy’s boy. When he’s had enough, Nik signals to me that we are finished playing by picking up the toy and placing it in my hands. With one final kiss, he slides off the sofa in search of new entertainment. I sit dumbfounded.

Though I’ve not thought of her in a long time, Anne’s image comes to mind. I smile and realize I now understand her gentle words of many years ago. As usual, she was right.

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The loft at Nik’s house. Nik, having just finished his breakfast, is in the play room wreaking havoc. Niksmom sits at her computer typing furiously as she mutters under her breath.

Niksmom: $%$*&% stupid Medicaid…

Niksmom pauses, hands poised over the keyboard, and cocks her head. She listens to the sounds coming from below. Splat-splat! Pat, pat, pat!

Niksmom: Uh-oh, that sounds like bare flesh…not good.

Sighing, she stands and walks to the railing. Chortles at the site below.
Nik is topless and beating his hands on his chest and stomach like a proud ape. The missing article of clothing has been deposited over the gate into the kitchen.

Niksom (laughing): Nikolas! Put your shirt on, sweetie. Nikolas…pick up your shirt, please.

She pauses, then continues sternly.

Niksmom: Nikolas Erik, pick up your shirt.

Nik looks up and laughs at her.

Niksmom (more stern): One…Two…

Nik toddles over to the gate, crouches down nearly onto his belly to reach under the gate. He hesitates then picks up his shirt.

Niksmom: Thank you! Nice cooperation! Good listening, sweetie. Can you put your shirt on for Mommy? Go ahead. You can do it!

That’s right, head first…now put your arms in the sleeves. Try again. It’s okay, you can do it. Try again. Good job! Now the other arm…HURRAY!

Niksmom sniffles and reaches for the camera.


Okay, so Elmo is supposed to be on the front of the shirt. But, really, who cares when your kid has just followed directions, responded to a stern warning count, and put on his shirt all by himself for the first time ever?

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Image courtesy of Richard Winskill
Jennifer Graf Groneberg has a beautiful post today at Parent Dish about ice cream —and ripples. It got me thinking this morning about what effect I have on the world around me —both in my own closely circumscribed world of family and in a larger, more global or community sense.

It’s so easy to go through the motions of each day, one moment at a time, without fitting the bits and pieces together —never seeing the forest for the trees. Days start to run together and events repeat with a numbing regularity which dulls my senses. Sometimes, in order to see ourselves more clearly, we have to step outside our daily routines; take the road less traveled —or at least the left turn instead of the right —and things change.

If we are lucky, we can see the change we are being and creating as we go. If we are, perhaps, not as observant but equally lucky, we have friends who are there to help us not only find the forest but navigate our way through it. That has been my experience in this past year of blogging. Some days —weeks really— I have been moving so fast and furiously that I’ve missed the beauty around me —until some kind blogging friend has reached out and touched my heart, reminding me that my absence is felt; there is a hole which no one else can fill.

Tuesday, the day of my high muckety muck committee meeting, was also my blogging anniversary. I was so busy —and have been all week —that I completely missed it! But, you know, there’s a funny thing here because —without the support, encouragement, wisdom, humor, and self-discovery I have shared with my readers and blogging friends over this past year —I would never have had any sense that my absence was felt at those committee meetings that I missed; that my one voice does make a difference. I would never have spoken up and had my needs —and Nik’s—met with such grace and ease.

Nor would I have been so beautifully reminded of the gifts I bring when I share my son with others —both online and in person. I know my son is magnificent and special; what parent doesn’t think that about their own child? But seeing my child through others’ eyes has made me a more conscious parent, more willing to recognize and, when appropriate, place my son’s needs ahead of my own desires and ego. I feel the weight of the responsibility a little heavier than I would like on many days but I shoulder the load with love because I know I am not alone in the journey.

The meeting itself went well; perhaps I will write more about that another time. The child care, depending on your perspective, was pretty good. There are things I learned that I will do differently next time to make sure Nik has a bit more guided activity for part of the time. Also, I realized that people do not fully understand perseveration until they experience it first hand. The unfortunate effects of allowing certain perseverations to continue for a long time have lasted long past Tuesday afternoon. But I can see that it is up to me to guide those who care for my son as well as to find new and creative ways to distract Nik and keep him more fully occupied in the days which follow.

None the less, I know that Nik was cared for by a loving and conscientious friend; S was not afraid of Nik’s high energy and insatiable —bordering on dangerous— curiosity. She’s even willing to do it again for the next meeting in July! S sent me a beautiful email after she got home; she wrote —

I so loved spending time with Nik. I want you to know, that I was able to connect with how awesome of a kid he is!
I know you already know!

Niksmom, ALWAYS keep the hope in your heart going strong.
That one-on-one time with him was amazing. I watched how he
problem-solved. I watched how he NEVER got discouraged when attempting something. I watched him enjoy his now –
which so many of us adults can never do. I watched his compassion
as he wanted to share his apple with me, just like his Mommy – I was honored.

Niksmom, I loved being with your blessing. Because guess what,
he is a blessing to me too. A reminder of WHY WE DO THIS!
Our precious, precious children.

When is the next ICC meeting? You have me for as long
as you can use me!

With love for you my friend,

Because of S’s generosity and the ripples she created by tossing her pebble into my tiny pond, I was able to do some work on an issue which is really important to me —helping families understand and successfully navigate the transition from the early intervention program to the schools. I am now heading a subcommittee which is going to create a family guide to be used statewide by the birth-to-three program and the parent information resource center. Ironically, our horrible experience with Nik’s transition (and subsequently, his bad school experience) puts me in a really good position to look at this issue from the standpoint of hindsight about what I wish we had known going in and how I wish things had been handled; I also have one of the more medically involved children that they have dealt with in a long time. There are other parents and some service professionals on the subcommittee, too, who have a variety of unique perspectives to share. I am looking forward to the process.

One day I took a pebble called blogging and tossed it into my little pond; my pond was forever changed. Then I took some pebbles from my own garden and dropped them into several other ponds. The ripples are still moving outward and I cannot see how far they extend, but I know that I am changed yet again.

Thank you for being a part of my journey, my growth, and my change. Thank you for the ripples you’ve made in my heart and in my life.

Photo courtesy of http://www.treesforlife.org.uk/forest/photo/rain.html

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You thought it was a tough situation for your kids in public schools now? Try being a home schooling parent in the state of California right now. A recent decision by the 2nd District Court of Appeals (re Rachel L.) states that “Parents do not have a constitutional right to home school their children.” Those are the words of Justice H. Walter Croskey in his Feb. 28 opinion for the court. The case decision mandates that a parent must now have a valid teaching credential in order to home school their child. According to Croskey, noncompliance could result in a criminal complaint against the parents.


The case is detailed quite well here at the Home School Legal Defense Association’s (HSLDA) web site along with links to the actual court opinion and HSLDA’s response.

The family in the case at hand in the 2nd District Court of Appeals chose to home school for religious reasons. That is but one of so many reasons a family might choose to home school. Other reasons may include safety or health concerns for your child, the need for a smaller class setting which school cannot or will not accommodate through a child’s IEP or 504 plan, or children involved in some aspect of sports or entertainment which require a self-paced learning progam —to name a few. I cite these examples because it is too easy to read the stories in the news and dismiss the impact because “it will only affect the religious home schoolers.” Not so.

Whether you are a home schooling parent or not, this decision could greatly impact your child. If other states follow suit, the result could be a very large influx of currently home schooled students —with either or both general and special educational needs— into the already strained (near breaking in many cases) public school system. Every student could be affected by a significant decrease in available resources in a system where most teachers are already stretched to the maximum in terms of class sizes and financial and material resources available.

Many teachers already use some of their personal funds to provide supplies for students in need as well as to supplement continuing budget cuts. If you think I am exaggerating, check out nearly any school’s list of supplies expected to be provided by families at the beginning of the school year. In my district, Kindergarten families are expected to provide tissues, folders, glue, hand sanitizer and the like; supplies which should already be staple items in a school.

Those of you who know me, either in person or on-line, know that I am not a terribly politically active creature; I prefer to keep my politics and religion to myself for the most part. But this issue has the potential to deeply affect me and my family; in my state, home schooling is classified as non-public and, as such, is not eligible for any funding, grants, or resources available to public and private schools —especially for special education support or services. Like it or not, the decision in the Rachel L case could affect your children as well. I cannot urge you strongly enough to read the articles, understand the court case and its potential impact on the future of education in this country, and then sign this petition.

You don’t have to be a California resident to make your voice heard on this issue.

Our kids —all of them— are counting on us.

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(Subtitled: Nikolas and the VERY BAD hair day)

In light of all the sweet comments about how well my wild child-biker boy seemed to tolerate the ambulatory EEG, I must come clean. I confess to engaging in a bit of Potemkin-izing in posting that photo. Not that the moment itself wasn’t real; rather, it was only a brief moment of levity in a very long, tiring, frustrating day. One I wasn’t quite ready to write about as it hadn’t yet reached its dénouement.

If you consider the mystique of the “biker dude” –the devil-may-care attitude, the I-do-what-I-want-when-I-want swaggering bravado typified in biker lore –well, you’ll get a slight inkling as to how our day really went yesterday. To say Nik had his own agenda would be an utter understatement. His agenda? To get the hell out of the contraption on his head –no matter what. Our agenda? To do whatever it took to keep it on for as long as possible. It was ill-fated from the start; someone was going to lose.

The initial hookup went okay. Nik thrashed and cried but he did not have to be restrained or sedated; that is a major breakthrough for all of us. (Though, I must admit I might have wished to be sedated by the end of the day yesterday!). I say initial because we made three trips back to the EEG/Sleep Lab within the first four and a half hours to repair the damage done by little fingers and thrashing heads. The sticky paste on his head, the pressure of the little metallic cups of the electrodes, the tape, the wrap, the weight of the recorder pack –which Niksdad brilliantly attached to Nik’s beloved doggy backpack; all of it was a complete sensory nightmare for Nik.

By the third visit, we had pretty much debugged the trouble areas where the tape and wrap weren’t holding. We had to break down and wrap under Nik’s chin, too. That made him ballistic! In the end, we brought supplies home to do our own repairs/reinforcements for bed time, knowing all too well that the electrodes wouldn’t make it through the night with ol’nimble fingers Nik! But I’m getting ahead of myself.

In all, during the daytime, Nik tolerated the whole get-up quite well –as long as he was thoroughly entertained every waking moment. Both Niksdad and I spent the entire day playing with Nik, keeping his hands and mind distracted from the gooey, hard, dangling things on his scalp. We actually managed to have some fun together in the process, but boy was it exhausting! As I wrote to Kristen last night, hour-long shape sorting sessions aren’t exactly my idea of a good time.

The cool schmatta on Nik’s head is actually his dad’s do-rag which he wears under his motorcycle helmet in warm weather to help absorb perspiration. We thought it was less intimidating and less post-brain-surgery looking than the flesh-toned brown cling wrap on Nik’s head. Nik didn’t seem to agree and only kept it on long enough for a few good photo opportunities. I’m telling you, the kid knows when he is on camera and expected to perform; that can be good and bad.

In the middle of the night, Nik awoke with one of his painful episodes and freaked out because he couldn’t get to his ear –it was partially covered with the wrap and tape. In his feral hysteria, he managed to pull the entire wrap off in one painful motion –along with the tape from his cheeks. As he flailed and screamed and wept, Nik kicked and glared at me. His expression vacillated between accusatory rage and pleading.

My heart squeezed tight in my chest as I tried to stay calm. (Hey, I’m great in a crisis but hell in the aftermath.) Niksdad and I managed to replace the leads which had come undone and I wrapped his head –again. With a full day of school ahead of him, Niksdad returned to the oblivion of sleep; Nik lay in his crib, his little body wracked with angry sobs. He held onto my hand, squeezing intermittently, not quite willing to punish me in full measure and unable to let go of the comfort I offered.

We stayed like that for more than an hour. I knelt by the side of the crib clinging to my composure and murmuring soothing shushing sounds as Nik began to relax. I felt like a supplicant at the altar; praying for redemption in the eyes and heart of my tiny, outraged savior. My absolution came on gentle, steady breaths as my child drifted off to a fitful, exhausted sleep. I lay on the floor and wept.

A few short hours later, I awoke to the sounds of Nik laughing and clapping both his hands and his feet –something he does when he is inordinately proud of some feat. Sure enough, Nik had managed to complete the job he had begun the night before –the job I had interrupted with my cling wrap and tape. Nearly all the electrodes were detached and dangling from the tangled mass of his gooey hair. Cognizant of his decisive victory, Nik sat up in his crib, blowing kisses to me.

We all knew it was a done deal that I was returning to the lab with Nik first thing this morning. We ended up completely disconnecting everything so they can download and analyze the information; hopefully, enough data was captured to be useful. If not, we will have to go back again this afternoon to try again for another 24 hours.

I’m not sure my sanity can withstand another assault so soon!

UPDATE: We dodged the bullet of another 24HR EEG! Whew! The doc is reviewing the data but the tech said they got a lot of good, clear recording —especially at the times we noted that Nik seemed to have some type of possible seizure activity. Most of his episodes showed up during his sleep on previous EEG’s so I hope they were able to get enough of the night time data in spite of Nik’s “hat doffing” exercise!

Right now, Nik is in his jammies and down for quiet time; I’m hoping he’ll sleep so I can, too!

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Damn Murphy anyway. I should have known better than to post all that wonderful “spring is coming, la, la, la” crap the other day. I might as well have stood in the middle of Fifth Avenue just daring the Manhattan cabbies to hit me as I crossed against the light.

Whatever it is that goes on in Nik’s head —and I mean that entirely literally —to cause such pain and distress is on the rise again. It’s been an ugly couple of days around here. Nik’s been Jekyll and Hyde, the master of the mixed message, contrarian extraordinaire. He wants me; he doesn’t want me. He clings to me; he pushes me away but gets upset when I leave his side. It’s no longer sweet and endearing. We’ve far surpassed bonding and moved right into the stalker stage.

And the pain. The physical pain that washes over him unexpectedly. While he’s playing or dining. While he’s watching Mary Poppins. It’s as if someone has stuck him in the eye with a hot poker. And Nik seems to want to blame it on someone —anyone —and I seem to be conveniently at hand. I can’t say I blame him, really. I mean, I’d like to be able to blame someone or something for the topsy-turvy days, the disjointed nights, and the bruises and tears. If I am feeling this way without the physical sensations Nik is experiencing, well, I can only imagine how he feels. Though, last night I did go to bed early with a migraine; I’ve not had those in nearly a year.

We’re back to the daily Advil habit to mitigate the worst of the pain —or at least dull it to a tolerable level. I hate when we have to resort to that, though; it really starts to wear on his stomach. Today he’s been clutching at his belly periodically. It makes me wonder if it’s the Advil or if it’s new symptom being added to the mystery ailment.

The irony is that Nik is making such great strides in so many areas; I just hate that it comes wrapped in such prickly packaging.

If I try to be really objective, I might be able to see that, perhaps, Nik’s sudden clingy, bossy, come-here-go-away behavior is an attempt at controlling something that feels out of control to him. A small measure of comfort when he feels ill at ease, perhaps? Maybe it is those things and maybe it is not. I wish he could tell me what hurts, what he feels and hears. What he needs.

Tomorrow morning Niksdad and I get the dubious pleasure of taking Nik to the sleep lab at our neurologist’s office; at 7:30 tomorrow Nik will be hooked up for a 24 to 48 hour ambulatory EEG. Thank goodness Niksdad does not have school tomorrow and will not only be around to help me in the morning, but will give me an opportunity to get out of the house for a bit by myself. The last time we did an ambulatory EEG, Nik was not walking; in fact, he had just learned to sit up a month before. I can’t help but wonder how Nik will respond to all the electrodes on his head and lugging around the backpack-recorder.

If there is a patron saint of parental sanity, please, please pray for me? For us?

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