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Archive for the ‘good mojo’ Category

Ok, so the day started with one teensy hiccup: the fact that Nik didn’t quite sleep straight through the night. But he woke fairly early in the night and was soothed back to sleep pretty quickly so it felt like I got a good night’s sleep. Around here, that’s about as good as it gets most days!

But the rest of the day, if I do say so, turned out to be Nik’s BEST.DAY.EVER. If it wasn’t, then I don’t think I can remember a better day— except, possibly, the day he was born. But that’s all kind of hazy and went down hill so fast afterward that, well, you know…

We’ve been seeing some great leaps forward again; little bits here and there. Today, it all just seemed to come together in a perfect storm of delightful progress that my face hurts from smiling and laughing all day. If I tried to weave it all into a narrative it would take me all night. Forgive me for the less than elegant turns of phrase which follow. I’m sure you’ll agree that the sentiment makes up for the lack of graceful prose, no?

Nik ate nearly THIRTY PERCENT of his intake by mouth today. It would have been more if I weren’t anxious about overwhelming his GI system with too much solid food at one time. He’s gotten so acclimated to the formula that we do have to ease him into the whole oral feeding gig.

Nik fed himself crumbs on a spoon. Yeah, I know, to anyone who’s never experienced the joys of trying to teach a five year old to tolerate new textures, it sounds silly. I’m not sure, but I think I saw Miss M (our awesome SLP) wipe a little tear away as she watched. He also ate everything I brought for him this morning; we’ve been working on increasing quantities and following his lead on trying new textures. A new milestone reached and a new goal created!

For the language development aspect of Nik’s speech therapy, we’re going to start working on some simple visual sequencing for eating (that gets his undivided attention!). Yep, another new goal.

He’s taught himself more letters using one of the toys he got for Christmas. Honestly. I thought the toy might be too advanced for him but I was mistaken! So now, the repertoire of letters he can identify on request includes (drum roll please): B,C,D,E,F,G,H,I,J,K,L,M,N,P,Q,S,T,V,W,X,Y, and Z. Granted, he’s not totally consistent but I’d say his accuracy is up around eighty percent.

We had a slight break at home in which Nik played by himself —building, building, building— and then ate like a champ at lunch. Baba Ganoush, peanut butter, and celery. No, he didn’t actually eat the celery but it makes for great oral motor work as he has to use his upper lip to clear food from the groove in the stalk. (Crafty Mommy, eh?)

The afternoon at PT and OT was amazing. From the moment we walked in the door, Nik followed directions and cooperated. He waited his turn —something that doesn’t get reinforced a lot since he’s an only child; we’re working on getting him around other kids —starting with a new playgroup tomorrow morning! But I digress…

During the first part of PT, Nik and Miss T had a slight battle of wills; Nik acquitted himself magnificently! First, he dragged Miss H, the delightful new aid, over to the cabinet to ask her to open it PLEASE and get his weighted vest. He actively asked with his signs and excited squeals and all. I was so proud of him. He fell apart over a toy a few minutes later. But he did it in such a way that *he* was able to pull himself back; we allowed him some time to tantrum on the mat (for safety) and it was very short-lived. He sat up, did what Miss T asked of him and the incident was forgotten. Milestone: The First.Time.Ever that he has been able to pull himself out of the downward spiral.

The rest of the PT session was spent marveling at Nik’s willingness to do things he’s always balked at before; swinging, riding on a stool both seated and on his tummy as Miss T wheeled him around the room. Nik’s always had tremendous resistance to having his feet off the ground with no other clearly defined, firm foundation under him. He smiled and laughed and played with a toy —all while keeping his green chewy tube firmly clenched in his mouth instead of mouthing every toy he touched!

Did I mention he’s teaching himself numbers too, apparently? I mean, I present them— I count things and sing songs about numbers and such —but we aren’t actively working on them right now. Another of his toys is all about numbers and the boy is learning. We’re still in the very beginning stages but he was able to sort stacks of cards with numbers on them today in OT. When Nik pays visual attention —he doesn’t scan and track well —he is tremendously accurate. The challenge is getting him to focus and look. A new milestone and new learning goal added today in OT, for sure!

Nik was a (mostly) willing and charming participant in all the activities Miss D had for him; he’s becoming a master at sorting colors in an ever expanding array. Now, we’re working on sorting functional items such as spoons and forks, stringing beads, and learning self-help skills.

At the end of the session, I watched Nik take Miss H by the hand again and lead her over to the cabinets. He tugged at the vest, signed open please, and waited patiently while she unfastened the vest. He took it off and put it in her hand as he pushed her hand upward toward the open cabinet. After Miss H put the vest on the shelf, Nik reached up and closed the cabinet all by himself! When did his arms get so long?? Then, he asked Miss H to open the cabinet next to it; I guess he was just curious because he closed it and walked away.

The rest of the day preceded in much the same fashion. Joyful, and cooperative, wildly exuberant playtime at the park with Daddy, dinner as a member of the “clean plate” club (his choice!) and sound asleep within minutes of going to bed at seven-thirty.

Lord, I’d like a few more of these to string together, please?

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Vision can be an amazing thing. When I remember that I have a vision for something, and I actually keep it in front of me, things seem to magically fall into place. Well, okay, maybe not exactly magically but with significantly greater ease. It’s true, I swear!

When I was in my thirties and still lamenting being single —having met Mr. Rightbutnotrightnow, Mr. WhenHellfreezesover, Mr. OopsdidIneglecttomentionmydivorceisnotfinalized, Mr. Rightfortonight, etc. —I created a vision of what I wanted in the man in my life. Now, let me be perfectly clear and up front; we’re not talking the wish list of “looks like [insert celebrity hunk name here]” or “makes XX amount of money.” More like “loves children and wants a family,” “Education and learning are important to him,” and “makes taking care of himself a priority.” There was more but those were among the top five characteristics I knew I wasn’t willing to compromise on.

I held onto that vision and didn’t compromise; I had a lot of first and second dates that never went any further. And then, one day…BAM! There he was, the man you know as Niksdad; and he was everything that was most important to me and more.

Somewhere along the line —okay, ever since Nik was born —I stopped making time to create visions for the really important things in my life. Some people might prefer to call it a roadmap or a path —it all depends on the technology or ideology you may have learned along the way. In any case, the net result is the same. We’re talking about drifting through life —and through some pretty major events in that life —on a river with a swift current, hidden rocks, and sudden rapids. And here I am floating along without a life vest and an extra paddle or even a clue as to where the shore is.

See, the thing about having a vision and keeping it present every day is that —eventually —one of two things will happen. You’ll either decide it’s not really what you want and let it go with grace or you’ll take steps to make it happen. Like with my vision for Niksdad; I didn’t actively go out and look for him, I merely changed my behavior so that my standards were higher and my needs became clearer to me. In other words, I stopped settling for less than I wanted.

So it has been with this homeschooling, home educating —call it what you will —taking Nik out of school. While it was all well and good to give myself an adjustment period to “figure out what our schedule looks like” and yadda yadda yadda, I’ve realized if I don’t steer this course —hell, if I don’t set a course —we will simply be adrift. Together, but adrift none the less.

So I have started to think long and hard about what I want our daily life to feel like, what sorts of things I want to expose Nik to, how to make it all fit together. I’ve started to create — (drumroll, please) a vision. It’s not complete by any stretch. But there are pieces which are crystal clear to me. The process is illuminating.

And you know what I’m learning along the way? Something I knew once but forgot; Vision is about hope, about possibilities, dreaming maybe a little bit bigger than you think you deserve or can handle. And most important of all? Having a vision requires an open heart —something I haven’t let myself have in a long time. It’s a scary, oh-so-vulnerable place to be. If my heart is open then there is a very large chance that it could get bruised or broken; I don’t suffer disappointments well and certainly not on my son’s behalf. But, open it I must. The nice thing is that my heart is like any other muscle in my body; the more I use it and exercise it the bigger and stronger it becomes.

The more I open my heart and let in hope and possibility, the more that comes back to me.

Serendipity seems to abound when I have my vision groove on, too. This week, as a result of my warbling about repurposing dreams and such, things began to fall into place.

I was at the YMCA on Saturday, having worked out with my new buddy Andrea; as I was leaving, I stopped at the desk to inquire about pool schedules. One of the things I’ve wanted to do is get Nik back into the water; he loves it and really gets a lot of benefit from the sensory input. I over heard the following from the woman in line ahead of me “I’d like to inquire about the special adapted swim for kids with special needs? My son has autism and I think he’d really benefit from this.” Next thing I know this mom and I are exchanging names and contact details and talking about the program her son is in, etcetera, etcetera. Meanwhile, we both left a note for the new aquatic director. I’d done that in the past and not gotten a response so I didn’t have great expectations about anything working out.

HA! That was in my pre-vision days, obviously. Tonight, I received not one but two phone calls from the new aquatic director. She’s only been there a few weeks and is totally revamping the entire swimming instruction program. The first call was to find out more about Nik and what we are looking for. The second call —less than thirty minutes later!! —was to tell me that she has an instructor who is already working with some special needs kids and is available to do one on one with Nik on Monday afternoons beginning on February 25th! She is going to check with the other mother to see if she would like to have her son join us; if not then Nik will have one on one pool time every Monday afternoon —all for $35!

So, if you ask me how this vision-holding thing is working out I’d have to say…

Wait for it…

Swimmingly! I’ll keep you posted…

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“Too often we under estimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
~ Leo Buscaglia

As so many of us know from personal experience, the world as we know it can change in an instant. Receiving an unexpected —possibly devastating —diagnosis, the premature birth of a child, the death of a love d one, the loss of a job or relationship; all can shatter our perception of the world as we have known it. The look across a crowded room into the eyes of a stranger —who one day becomes your spouse, the sound of your child’s first cry or the feel of their tiny hand in yours; the “Hail Mary” shot that wins the big game; the potential agents of change are myriad and limitless.

This morning’s visit to Nik’s new neurologist feels very much like a life-changing experience. We have had so many frustrating visits to doctors that just don’t seem to care or understand; brilliant but, perhaps, burned out doctors with no curiosity left to enable them to see that a box can indeed have more than six sides and eight corners. Doctors who simply want to scribble an indecipherable, unpronounceable name on a pad, pat our hands with a sympathetic nod of the head, and send us on our way to deal with the consequences. We are understandably wary of things which sound too good to be true.

Our initial visit with Doctor G. (no, not that one; we hope not to see her, well, ever) lasted nearly an hour and a half. During this time, the doctor sat and actually listened to what we thought was the primary issue, why we were seeking his help. He spoke candidly with us about what he saw on Nik’s multiple MRI images done over the course of a few years; he was pleased to tell us there is nothing significantly disturbing and certainly no sign of anything progressive. We already knew that from our own readings of the radiology reports, but had never had a doctor explain to us what he actually saw on the films or what it all may mean.

He queried, he listened, and he took copious notes. He stood beside me and watched the videos on our laptop computer —all of them —and then he asked if he could get a copy of the disk so he could review them more in depth and possibly discuss them with his colleagues. He did not dismiss our questions or theories out of hand nor was he patronizing. And Nikolas, who is a very good judge of character, took to him right away —in a way he has never taken to any other neurologist. Nik clapped hands, played with Doctor G’s hair, and followed him with his eyes a great deal. Together, we were a family at ease for the first time in a very long time.

Doctor G walked with Nik and made some observations about his gait and balance which put things into a clearer view for us and gave us something concrete to work on in physical therapy. He praised us for trusting ourselves and making good choices for Nik and for providing him with the things he needs. There was never any mention of a strict educational program at a certain school which, Niksdad and I agree, would likely remediate much of Nik’s uniqueness out of him in an effort to have him “fit in.”

The subjects of tests and medications —and autism —were all discussed in depth. Doctor G made some recommendations for some ways to evaluate Nik’s apparent pain response —whether it is from seizures, headaches, or some other source —in a systematic way. He discussed the possibility of changing some of Nik’s current meds and possibly adding a new one down the road but he made it clear that it was a discussion we would have much later —not a done deal. He then asked a question I have never been asked by a medical professional in all of Nik’s life. “How do you feel about this plan?” Since I had initially raised a thought about one of Nik’s seizure meds, Doctor G suggested we could start with that change if it would eliminate a concern for us, despite his opinion that it probably wasn’t the cause. He wanted us to be comfortable with the care plan and truly wanted our input.

And if that wasn’t enough to bowl us all over and make us fall head over heels for Doctor G, he then said, “I will always tell you when I don’t know but I will also always keep looking for answers to help Nikolas.”

“Home is not where you live, but where they understand you.”
~
Christian Morgenstern

“Not only is another world possible, she is on her way. On a quiet day, I can hear her breathing.”
~ Arundhati Roy

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In the life of every parent, regardless of age, gender, socio-economic status or political beliefs, there comes the first of many moments which define you beyond the mere biology which has led you to a point non plus. When is it acceptable, nay encouraged, to reward or celebrate bad behavior? This is the cross-road at which I found myself this morning.

Nik and I had a very busy morning today. We woke before dawn —Nik’s bedtime dose of Advil having worn off around 4:30 a.m. —to greet the day with squeals and cries of delight (his, not mine) interspersed with sporadic head banging (mostly Nik). After a spot of breakfast, we packed up our gear and headed off to our morning workouts. Nik’s first —an hour spent in the delightful company of Miss D and Miss T for both OT and PT —followed by my session with my trainer at the Y.

Nik was in fine form this morning. Happy and highly interactive, he greeted Miss D with a big smile then promptly giggled and ran across the room; it’s a delightful new game he’s begun to play, called “Catch me if you can.” The adventures continued through the dual session as Nik independently climbed up the ladder (!!) to the platform above the slide and ball pit. The first time around he waited for Miss D to hold his hands and then he jumped into the ball pit.

The next time through he waited for Miss T to encourage him to do it again —then veered at the last second to slide head first down the sliding board. It is a hoot to watch; Nik points one toe straight out behind him and flexes the other foot to rub the toes along the inside of the slide as a tension-type braking mechanism. All the while he holds onto the outside of the slide with his hands. The result is a perfectly controlled, danger-free sensory delight!

Now, you may be wondering where the bad behavior comes in to play, yes? Apparently, it only happens when Mommy’s not around!

Energized and feeling fine (God bless the wonders of Advil and Tylenol to control the persistent pain and inflammation Nik is still experiencing in his right ear —but it’s not an ear infection!), we took off for the Y. Nik has been doing really well in the child care area as I work out. He pretty much keeps to himself —finding familiar toys with which to entertain himself between bouts of tipping over chairs and laughing hysterically. (Side note, the last time he did this he actually then picked the chairs back up! Progress.) I left Nik in the care of the staff and a very busy group of children. I’m not even certain Nik noticed my departure. Sigh…

Fast forward an hour. Sweaty Mommy comes to get Nik so we can go home. The supervisor begins to tell me how Nik’s been for the past hour; she knows he has autism and other delays and she’s always quick to point out when he’s either having a rough day or doing something really cool. She tells me, “Oh, he’s been having a grand old time exploring the underside of the furniture, tipping the chairs, playing with toys…and stealing snacks from other kids!”

REWIND!!…Did she say stealing snacks? From other kids? She must not know who my child is. My happy loner who doesn’t eat a morsel of food by mouth. Obviously, she’s got him confused with some other cute little boy, right? My face must have said it all. She laughed and said, “Yes, Nik was stealing snacks. He stood and watched the other kids and, when they’d look away, he snuck right in and grabbed some off the table.” Apparently, he even made an attempt —lip service if you will —at eating one. Once he realized it was actual food and not a toy, he spit it out immediately. Apparently, licking food is OK, eating it is another matter entirely.

I nearly fell over from the dizzying rush of shock and pride.

Attention to other children around him?
Stealth?
Food?

I think I’m going on vacation; clearly, my work here is done.

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No more pencils
No more books
No more teachers’ dirty looks

Out for summer
Out till fall
We might not go back at all

School’s out forever
School’s out for summer
School’s out with fever
School’s out completely

Alice Cooper “School’s Out”

It’s official. We had our final IEP meeting today to withdraw Nik from school. It went better than we anticipated it would; Niksdad was convinced they were going to try to throw a wrench in the works. I was sure they wouldn’t. After all, they got the better end of the deal financially; they got funding for Nik because he was enrolled through October 1 and they are no longer legally responsible for providing services to him.

We had to hash out a few finer details such as the fact that the IEP signed under duress a month ago is not, in our opinion, a valid legal document. But, in the event that hell freezes over and we send Nik back to school before next September, he is entitled to receive the services outlined in that IEP. I won’t say “never” because that will only come back to bite me in the arse. However, Niksdad and I are very clear and very much in synch on the point that Nik will not return to school until the law says he has to.

We took Nik with us to the meeting; he was a great ice breaker. Miss J, his former teacher (“former” —I like the sound of that!), was a little stand-offish until after the meeting. I think she truly thought that we were taking Nik out of school because of the bad IEP meeting in September. In truth, that was only the final straw. After the meeting, J came over to say goodbye and to see Nik.

We made it nearly idiot-proof for the school and they seemed to appreciate it. One or two of the team members actually made it clear to us, after the meeting of course, that they thought we were doing the right thing. Miss D, the school OT (not to be confused with Miss D our new OT) told me she saw a difference in Nik since he’s been away from school and that she thinks he would be so much better off after a year at home. She told me to call her so she could go over the sensory evaluation and help us get that information to the new OT.

So, it’s over. Done. We are moving on down the road to new adventures, horizons yet unknown and unseen. I promise we’ll send lots and lots of postcards…

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Nik’s Autumn Almanac

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

“Autumn Almanac” by Ray Davies, The Kinks

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

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

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

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

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

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

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

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

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You can do it, all you need is a hand.
We can do it, Mama is gonna see to it!
Curtain up! Light the lights!
We got nothing to hit but the heights!
I can tell, wait and see.
There’s the bell! Follow me!
And nothing’s gonna stop us ’til we’re through!
Honey, everything’s coming up roses and daffodils!
Everything’s coming up sunshine and Santa Claus!
Everything’s gonna be bright lights and lollipops!
Everything’s coming up roses for me and for you!

(“Everything’s Coming up Roses” from GYPSY)

Woo Hoo! Time for a happy post and a happy dance!

As you know, I’ve been in that nasty ol’ rabbit hole lately and trying my darnedest to claw my way out. Of course, all the cyber ice cream probably didn’t help! Just makes my butt bigger…but I digress from the H A P P I N E S S I want to share with you all.

We had our appointment with the immunologist today; I’ve been really worried about this one since Nik’s been so sick for the last year and it doesn’t seem to be improving. Both Niksdad and I have been imagining the worst-case scenarios; it’s not a difficult leap to make for either of us, given what we have been through since Nik was born. Well, the doctor gave us some wonderful news today —Nik’s immune system has done significant catching up! While his immunoglobulin levels are still slightly low, they are at least I the normal range for his age group.

This is very good news, indeed. It means Nik’s immune system has been developing the proper antibodies in response to illnesses and from the booster shots he’s received. In fact, the doctor said he didn’t think we needed to worry about having Nik around lots of kids (as in a school/daycare setting) anymore. He thinks that Nik may have been so ill this past year because it was Nik’s first full-scale exposure to lots of stuff —ever.

Until Nik made it safely through his first two winters at home, we had to be super-cautious about exposing him to illnesses which could cause major respiratory setbacks. Since Nik’s first winter was spent in the NICU, his first real exposure wasn’t until the spring of 2006. He started school in June 2006 and has been sick off and on ever since. Most likely, he simply hadn’t had the time most toddlers have to build up antibodies before getting bombarded in a school setting. (Hmm, yet another affirmation of our decision to remove Nik from school this year; he’ll have a chance to develop greater immunity at a more normal pace.)

There’s a bonus. Not only is this good news from a health perspective; it means that Medicaid cannot force us to use the letter of medical necessity from the pediatrician which states that Nik shouldn’t be in school due to concerns about his health. The issue has become moot. “Why is this good news,” you may wonder? Well…

It means we can proceed with our plan to cut school out of the picture entirely and not have to worry about Medicaid trying to force them back into it. That would just be a legal quagmire at this point and we are not prepared to go there; we’d much prefer to spend our time and energy living our already too full life and working with Nik —playing, teaching, encouraging in the ways we know he thrives. Plus, with Niksdad in the clinical phase of his nursing school experience, I’d pretty much have to shoulder the burden of preparing for a legal fight all on my own. Um, no thanks.

But wait, there’s more! (“Yes, if you act right now, you’ll get this amazing set of Ginsu knives free…”) While I was out getting my shaggy mane cut, colored, fluffed and puffed this afternoon, Niksdad called the case manager at Medicaid to tell her about the immunologist’s report. We felt we had to be fair so she didn’t waste time trying to work an angle that would only lead to heartache for her. OK, that and the fact that we would be opening ourselves up to a potential charge of fraud (by the school district) if we proceeded to present the letter of medical necessity to school —thereby forcing them into providing services —and withheld the knowledge we gained this morning.

As you might imagine, Miss Case Manager wasn’t thrilled about it but she certainly understood. She’s actually a very lovely person and also a mother of two small boys so she completely understood the relief we felt; she also appreciated the medical expenses that were neatly avoided in Nik’s not having some sort of autoimmune disease! Miss C.M. has assured me all along that Nik’s best interests were being considered and that he would indeed be taken care of; I was afraid to trust her.

Today, I humbly admit I was wrong.

Apparently, this week while I was wallowing in the rabbit hole (well, it was dark and cozy down there), Miss C.M. was diligently following up with her supervisor, their compliance department, and the state director of Medicaid this week. They all agreed to authorize services for Nik in all areas —PT, OT, Speech, and Feeding therapies —for another TWELVE WEEKS, once per week in each area through the end of January. When Niksdad told me this, I cried tears of relief and joy.

I then promptly called Miss C.M. to thank her profusely. See, piss me off or —worse —screw with my kid and you’re on my black list; it will come back to bite you some day. Take good care of those I care about? You have my sincere gratitude and willingness to make sure you are recognized for your good deeds. Miss C.M. told me that once the therapists are nearing the end of the twelve weeks, they just need to submit for more authorizations; she said it most likely wouldn’t be a problem to extend them. Whew! Miss C.M. earned her place in my heart today.

While the 30 minute sessions per week aren’t necessarily as much as I think Nik could really benefit from, it is significantly more than he would be getting through school. I also know that I will attend and participate in each session and learn what to do at home. The value of the carry-over at home is significant; it is not something we ever got from school in spite of our asking numerous times. Besides which, I can now stack appointments on just a couple of days a week, leaving time available to do things like go to the park to meet Mom2Rebels, drive north to meet Irene, take Nik to the zoo, go swimming, take a music class, play in the leaves outside, nap on the floor of Nik’s room —whatever our hearts, mine and Nik’s together, desire.

Tonight, I feel like a tremendous weight has been lifted from my heart. I am filled with hope and joyful anticipation again. There are still hills to climb and unknown challenges ahead, I know. But for now the road ahead looks clear and smooth and I see a glimmer of a rainbow in the distance.

Image Courtesy of WallpaperDave.com

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Because my son, in his infinite wisdom, knows when Mommy needs a pick-me-up…
with apologies for the, er um, “unique” camera style. (Hey, just imagine The Blair Witch Project as a comedy!)

Moo-vin’ on…

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I’m happy to report that Nik is feeling much better today. He’s been back to his normal self since yesterday afternoon. As Murphy’s Law would have it, by the time we got to the pediatrician’s office, Nik was fever free and rarin’ to go.

I have to say, Since we’ve removed Nik from school, every day just gets a bit better. Not so much that Nik is making miraculous progress overnight. More so that we are establishing a rhythm and a pattern to our days that suits us so much better than the frenetic pace we were keeping with school. Nik goes to bed a bit later now but then he can sleep a bit later in the mornings –except on the days we have a date at the YMCA (um, that would be me with my trainer and Nik with the childcare folks). For the most part, Nik’s been cheerful and chipper; even when he was really sick, he still had his moments of raucous laughter and singing. In fact, one particularly funny thing happened yesterday.

I’ve noticed an interesting behavior lately; Nik will put a finger in one of his ears and make a high-pitched “Bah” sound. He does this a couple of times, switching ears –sometimes doing both ears at once. I’ve thought, “Huh, Nik must be experiementing with sound somehow.” Pretty cool, yes?

So, yesterday afternoon in the doctor’s office, Nik cooperated so nicely as he helped Dr. M with her stethoscope and such. He even picked up the otoscope (the ear-thingie) and put it to his ear to help her look in his ears. As he did this, I heard the same “Bah” I’ve been hearing for the past week or so. Then, it hit me. Nik wasn’t experiementing with sound after all; he was imitating the sound of the thermometer beeping in his ear every time I take his temperature (I use the ear kind as it’s the only one he will tolerate). I about fell over I was laughing so hard. Well, I have had to take his temp a lot lately…still do, but that’s another story.

As for me, I feel a sense of peace these past few days; it seems to have settled over me only recently. Whether it is because things seem to have shifted since I spoke with Legal Aid (no new information yet) or if it’s simply because I have realized that we really are fine — with or without school or outside services. Yes, there will be issues to resolve –most notably in the areas of speech and autism supports –but each day Nik and I connect in new ways and find our way together.

I think, too, I am taking great comfort in the writings of some other bloggers –reports of new milestones, fun adventures, following dreams, settling in to a new home and home school, more than one mom deciding to take kids out of school. It seems we are all finding our way on this path of mothering our children and it feels like a sense of peace is indeed settling in for more than just me. Is that what happens when we follow our instincts in spite of the fears?

I am amused by Nik’s antics lately; laughter is so good for the soul. I don’t think I realized how little we’ve been laughing over the past couple of months; we’ve been so consumed by the struggles with Nik’s school. Lately, however, it’s as if Nik can sense the change in the air –the release of the tension –and he’s letting loose, too.

Today, we invented a new game together. Nik likes to do a lot of things hand-under-hand –meaning he manipulates my hands to do things. This has recently carried over into his using his hands to manipulate things like my mouth. Yeah, I’m not crazy about it but he thinks it’s the funniest thing since a Three Stooges marathon. Blame the feeding therapist, Miss M. She is trying to get him to imitate certain sounds so she had him put his hand on her mouth as she made the sounds. Well, Miss M doesn’t live here so I get to do this over and over. I don’t mind telling you it gets a smidge annoying.

So, today, just to be silly –and because I am taking Jonathan Levy’s advice to heart bout making more eye contact and joining in the stims– I played this little game but threw in a twist. Instead of making the M, B, or P sounds like Miss M, every time Nik pried my mouth open I made an animal sound. At first, Nik shook his head as if to admonish me, “No, Mommy, you’re doing it wrong.” After a few times of me making my best Donald Duck (and other animals) sounds, Nik caught on and began to play with great fervor. The more I made animal sounds, but most particularly the duck sound, the harder he laughed –a deep, jiggly, crinkly-eyed belly laugh. The harder Nik laughed the more I laughed. The more I laughed… the more Nik looked at me! We both laughed so hard we were giddy and teary-eyed.

I love having that kid home with me.

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Naturally
When I discover the cleverness of a remarkable me,
How can I hide it
When deep down inside it just tickles me so
That I’ve gotta let go and crow!

Peter Pan (stage version) “I’ve Gotta Crow”

OK, so I know I said I’d be offline for a bit doing the research and whatnot for our yet to be scheduled follow-up to the IEP from hell. But, well, I gotta crow! Besides, I am waiting for a critical bit of paperwork which school doesn’t have ready yet. Uh-huh, you guessed it; Nik’s IEP isn’t even in it’s final form yet and we are ELEVEN DAYS past the meeting date. Wonder what they would have done if Nik hadn’t been ill all last week

So anyway, back to the crowing bit.

Today, Nik is completely fever-free; he still has the runny nose and slight cough but he’s better. Sooooo…I took him to OT, followed by PT, then playgroup this morning. It was an experiment to see if he could tolerate the full two hour window of work and play.

Nik did awesome.
He gave Miss D (the OT) a run for the money with some things but it was evident to both of us (D and me) that Nik was so happy to be there with her. He did pull his own little “gaslight” on Miss D when she made him ride a scooter around the room. He fought and screamed and kicked and thrashed. Miss D never gave in. When they made it to their destination —the ball pit —and Nik got off the scooter, he gave Miss D a smarmy little look that said “Ha, this is what I wanted all along.” He laughed and toddled off smirking. What a stinker.

In spite of his protests during the scooter ride, Nik actually used a lot of vocalizations and inflections (where’s the speech therapist when you want her, right?). He also did a lot of really great, focused work doing tasks to completion multiple times where he used to simply throw things midway through and go in search of a door to play with. He even let Miss D swing with him for a good long time.

He also did a great job with Miss T during his PT session. Lots of hard work because we are trying to help correct a muscular imbalance in his hips which has developed over time. Nik doesn’t like to bear as much weight through his right hip as he does the left; it’s simply a matter of uneven use and posture but it’s become a habit we need to break. He fought it but made it through and did some nice things in the process. Nik’s gotten pretty good at communicating when he’s either bored or overwhelmed and needs a change of activity. When he’s bored, he throws the things he’s playing with (blocks, puzzle pieces, etc.); when he’s overwhelmed he throws things, too, but it is accompanied by a fit of uncontrollable giggles. Hey, I suppose ti could be worse, right?

So the real crowing is about to start…playgroup. Nik was so present and focused. He played nicely —appropriately and calmly —with a variety of non-electronic toys. Sure, Nik still obsessed about each door and tried to get to them whenever he could and he stuck to lots of things he already knew how to do well. But he tried several new activities and seemed to enjoy them.

He crawled under a low obstacle course Miss T had set up; Nik is not overly fond of crawling or being on his belly and this activity required both. He did this same activity three or four times; each time he did it better and more smoothly.

He played with a baby doll, giving hugs and kisses on the forehead!

He interacted socially with people as if it were a natural every day occurrence for him.

He wanted what two of the other kids had and came over to them to check it out!

I know that many of you understand how some of these things have rocked my world today —in the best possible way!

I think I said this to someone in an email last night —
I am convinced that having Nik away from the sensory overload of the school environment for more than a week has made a tremendous difference in his ability to self-regulate. This, in turn, helps him make such wonderful strides as he did today.

I am so proud of my son —today and everyday; he makes me crow with glee!

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