Posts Tagged ‘school’

So, this happened recently:

*ring, ring*
Me: Hello?
Caller: Hi, Mrs. Andersen, it’s Ms. G (the SLP from school).
Me: Hey, what’s up?
Ms. G: I’ve been working with Nik this morning and he’s been doing such a great job using his verbs! He said “Call Mama” so I thought I’d reinforce his excellent communication with a special treat. Hold on, I’ll put you on speaker.
Me: (possibly a bit squeaky from the sudden lump in my throat). Hi, baby! Are you having a good day?
Nik: Hi, Mama. Swim.
Me: Did you swim today?
Nik: Swim all done.
Me: I know, sweetie. Who did you swim with?
Nik: Swim Mr. Mike. All done. Walk. Goodbye.

With that, he hung up Ms. G’s cell phone.

And then my heart exploded and my face leaked everywhere.

“I just called to say I love you. I just called to say how much I care. I just called to say I love you and I mean it from the bottom if my heart.”
~ Stevie Wonder, “I just called to say I love you”

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Nik’s IEP is next week. I have been in constant contact with his teacher (who gets him, thank God; she really gets him), writing goals and summaries, researching and ranting to friends about “stupid OT’s” who think my kid needs a handwriting goal… again; Nik’s teacher will set her straight.

A sample if Nik's ability to trace his own name after 8+ years of occupational therapy. There are reasons I keep pushing for assistive technology, folks!

A sample of Nik’s ability to trace his own name after 8+ years of occupational therapy. There are reasons I keep pushing for assistive technology, folks!

As far as IEP’s go, I think this one shouldn’t be too bad; Nik’s got a really great team working with him this year. They get him; they have seen the funny, smart, affectionate child I see. They know him well enough to recognize when he is having an off day which is not representative of his potential.

Still, I’m not going to lie; the anxiety is really running deep over this one. We are making big changes, big requests and, possibly, even adding some new letters to the already overflowing alphabet-soup of diagnoses and classifications which are a significant part of Nik’s educational record. We’re losing some services but gaining others…for now. We’re going to be asking for a minimum two-hundred percent increase in one of his services; I expect a lot of push-back on that (thus the reading and research). Over all, though? I’m hoping for good things and easy resolutions.  And yet…

He’s nine. NINE. The gaps between my child and his peers are growing so much wider and the fears I have for my his future are taking root ever deeper in my spirit. The emotions are hard to push down.

I see-saw between hope and despair, manic laughter and tears.

My fingernails have all been cut off to keep me from biting them to the quick.

I may or may not have indulged in some emotional eating lately.

It feels like so much is at stake in this particular meeting. This particular year. It feels pivotal and overwhelmingly, intensely…huge.

It’s too much. And I am foundering.

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Yesterday was a pretty tough day for my son. He’d been looking forward to the country-wide Special Olympics bowling event for weeks. His excitement was mostly about riding the school bus and seeing “friends” with whom he could play his wordless hand-clapping game. His expectations and the reality were so very, very far apart.

Don’t get me wrong; we love Special Olympics and all that it has opened up for Nikolas. It gives him an opportunity to learn new skills, to experience new situations, and to practice some of the very important listening and participation skills which challenge him greatly on a daily basis. I appreciate that he can participate in whatever manner meets his needs dictated by his physical limitations in both motor and visual processing and coordination. Frankly, I also love that Nik is often not the most obviously impaired child present – as it so often feels when we are at the park or even within Nik’s own wonderful classroom setting.

So, why was it such a tough day, you ask? Simple, really…

Take approximately 200 kids, each with an accompanying teacher, paraprofessional and/or nurse, add a family member for every other kid present, the staff and volunteers from Special Olympics, the requisite number of bus drivers to transport those children and school professionals from four different school districts and pack them all into a 32-lane bowling alley for three and a half hours.  I don’t have many sensory issues of my own, nor do I have any impairments which make it exceptionally challenging for me to process visual and auditory input like Nik does, but I can tell you that my brain was still buzzing from the tension more than six hours after the event was over.

Nik gets ready to bowl

Nik gets ready to bowl with the help of a ramp and his friends.

Nik didn’t even make it through the first of two full games before he was spent.  He went from a bubbly and exuberant boy when they first started, to a child who could not even pull himself together after the first five frames of the first game. He simply shut down. DONE. No amount of coaxing or cajoling would work. In fact, it made it worse.

If I had the benefit of today’s hindsight yesterday, I would have simply taken Nik home. It was shades of our Special Olympics soccer experience of a year ago when Nik was so utterly overwhelmed by the sheer volume – both in terms of people and noise, that he could do no more than throw himself on the ground and wail his outrage and frustration. Yesterday was deceptive in that he did not throw himself on the ground, but he made it crystal clear he was not going to bowl any more. Instead, we spent hours walking up and down and taking some breaks to sit and drink some soup or nibble at his bagel.

Nik has, clearly, had enough fun for one morning!

Nik has, clearly, had enough fun for one morning!

Given how crummy he feels right now between his infected ears and sore throat? It’s a miracle he didn’t throw himself on the ground and weep and rail at the world; I’m not so sure I wouldn’t have in his situation. Progress.

But at what cost? I watched as my beautiful boy flitted from place to place like a hummingbird –unable to fully alight and be comfortable or content for more than a flash before the compulsion to move on took hold. We walked and wandered. We tried to eat lunch and sing songs in the semi-quiet rooms near the back of the bowling alley. Still, it was all too much. I could see the perseverations rising like flood waters and I felt helpless to figure out where and how to draw the line. I wanted to hang in until the end so that Nik could get the ribbon for which he had worked so damn hard. He may not have finished his event, but he gave it his all and I was proud of him. I wanted him to hear the crowd celebrate his achievement, too.

As the awards were being given out, Nik’s para, Ms. M, and I realized that something was wrong; Nik’s entire group had been given their medals and ribbons and were making their way toward their school groups. There we stood, confused.  I know Nik didn’t understand the ramifications of what was happening, but Ms. M and I both did. I felt hot tears prick my eyelids. Ms. M adores Nik like he was her own son; she asked me to stay with Nik and strode off like a mama bear on a mission.

Ms. M returned triumphant but disgruntled. When Nik hadn’t finished his first game, a volunteer removed his name from the roster. On paper, it was as if my boy had never shown up, had never given every ounce of heart and energy he had. As Nik sat slumped against my shoulder and my heart was, figuratively speaking, on the floor wailing in frustration and outrage, Ms. M. simply made it right. (It’s one of very many reasons I am so grateful she is working with Nik!)

When the announcer called Nik up to get his ribbon, Nik was all smiles and fist-bumps with the police officer who gave him his ribbon. I, on the other hand was all sniffles and quiet tears. The oversight in such a setting where it’s all about inclusion, left me rattled.

My boy works so hard to make his way in a world which neither understands him nor fully embraces him for how he is right here, right now. As far as I’m concerned, he deserves a ribbon every day.

Emotional crisis averted, we made our way to the opposite end of the bowling alley to find Nik’s teacher and the three classmates who had participated in a different division. It was like watching a family reunion; Nik suddenly sprang to life and bubbled over with joy at seeing his friends.  They were also over stimulated and tired from the long morning. One of the boys can get very physical when he is in that state and I worried when Nik grabbed his hands to start to clap with him. I admonished Nik to use his “words” (his speech device) to ask the boy if he wanted to clap.

The way Nik spelled everything out was as if it were one long, breathless request. “Marcusclapplease.” Marcus has always made me slightly uncomfortable because he is so much older and bigger than Nik and has no concept of personal space. He also has a very flat affect so it’s hard to tell what he’s feeling or thinking at any moment. I watched, somewhat leery, as he put his hands up for Nik to clap.

Marcus pulled his hands away very suddenly and mumbled “clap done.” Nik persisted and Marcus tensed. I knew Ms. M and Ms. C (the teacher) were watching and ready to intervene, yet they didn’t seem at all anxious about what Marcus might do. Marcus reached out and put both of his hands on Nik’s shoulders and slowly pulled him to his chest. I held my breath as I watched in awe; Marcus slowly bent his head down and, with a tenderness I could not have imagined he could express, kissed the top of Nik’s head in the most affectionate and brotherly gesture I have ever seen. So simple, yet so profound.

The sting of the three-plus difficult hours which had come before this moment suddenly melted away. This…connection; this was the real prize for my son who gives his all every single day. This was what he came for.

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So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!

I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas.  More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control.  We were mistaken.

The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place.  It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder.  Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.

Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.

In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids.  Those will be fitted in just a couple of weeks.  That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.

This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said.  This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.

We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.

Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.

So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:

OMG OMG OMG!!! I completely forgot to share this news:

Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)


Yin and Yang. Yin and Yang. The journey continues.

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I must admit, for years I thought all the hype about Apple products was just that…hype. I didn’t get the appeal, certainly not for a price point I really couldn’t justify.  Sure, I remember my sister’s first MAC and the goofy little icons and the weird mouse-thingy. I thought it was all kind of ridiculous and pretentious.  I was a PC gal through and through.  I sneered when my other sister became an early adopter of all things Apple —the iPhone, the iPod, etc. It became a badge of honor to me that I resisted the pull.

Then, just a little less than a year ago, some friends —with the generous assistance and kindness of some strangers— made it possible for my son to receive an iPad.  We had no idea whether he would take to it or what it might do for him. After all, my nonverbal, multiply disabled son had recently been diagnosed as mentally retarded (those were the words of the doctor) and we were told to prepare for a lifetime of care giving and not much else. We didn’t believe in the diagnosis and just knew we had to show the doctors that there was —there IS— a light burning fierce and bright within our boy.

Because of all the hype, we had borrowed an iPad several months prior, but Nik didn’t really get it. He struggled with the touch-screen; his cerebral palsy made it hard for him to control his hand movements. Isolating finger movements for tapping or making single strokes or swipes required for some of the simple apps we tried was a pipe dream.  We were reluctant to try again, fearful that the good will and generosity being extended to us would be wasted.

Nik’s new iPad arrived just in time for Thanksgiving —and shortly before his seventh birthday. We already knew that Nik loved letters. In fact, he is obsessed with them!  Not having a plan or any idea as to what might be good to try, we relied on the generosity of still more strangers —the fantastic people associated with  Moms With Apps— who donated free apps for Nik to try.

The advent of Nik’s Vantage Lite speech generating device in our lives, roughly two years ago, brought dramatic change; it gave Nik the power to communicate with us in ways that did not involve screaming, throwing, or slamming his head on the floor to express frustration. To date, no other technology has provided that for Nik. Even the iPad, with all its myriad communication apps, does not give Nik the ability to communicate in the manner which works for him. However, I do not exaggerate when I say the gift of Nik’s iPad changed our lives forever.

While the iPad cannot replace Nik’s communication device (yet), it has opened up the world to my boy.  It’s not about the technology, per se, but what is being done with it and the ways in which children like Nik can discover and be motivated to push themselves so far beyond what others have deemed his ability level. In the time Nik’s had his iPad, he’s taught himself so many things and has opened the eyes of those around him to the intelligence he holds in his wordless self.

Once written off as mentally retarded and not very teachable, Nik is now impressing his teacher and other professionals with his spelling abilities, his problem-solving skills and his manual dexterity. We are seeing cross-over and generalization of skills beyond the use of the iPad.

My child, who could not point his finger a year ago, can now actively show me what he wants me to look at even if he doesn’t have the voice or the words to describe it.  He can find music to soothe himself, videos to entertain or teach himself  new things —his interests run the gamut from ABC’s to DIY home repairs. (I told Niksdad to lock up his power tools, just in case!) It has opened up a world of exposure to peer interactions which are not otherwise available to my son —an only child. Video modeling at its finest.

Do I think it’s a coincidence that Nik has recently begin to approach children his own age for play and interaction —regardless of how clumsy the attempts may be? No, I do not.

Do I think the advent of the iPad means Nik will suddenly be able to live independently or go to college? Perhaps, perhaps not. But I do know that it’s made the idea that it may even be possible a part of the conversation. For that alone, you can call me a Fan Girl.

Steve Jobs was a visionary, an out-of-the-box thinker and a remarkable leader. I think his legacy will not be about technological innovation as much as his transformation of the way we connect to one another, the ways in which we open up new horizons for both those who would boldly step into the future as well as those for whom, perhaps, there was once no future.

Rest in peace, Mr. Jobs. You will not be forgotten here.

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Whoops! Sorry, I didn’t mean to leave everyone hanging, wondering about the IEP and Nik’s school future.  Life, it seems, wasn’t quite finished doling out the hard knocks.  In a nutshell, my seventy-eight year old mother had a bad accident involving a ladder and a head injury which resulted in the discovery of a mass on her brain.  Yeah, good times!

The upshot is that it’s been a rough couple of weeks as I’ve been helping my father take care of her between chauffeuring Nik to school and doctors’ appointments.  In all, Mom is very lucky and is on the road to recovery.  An MRI this week has indicated that the growth is actually a fairly benign meningioma which is not actually in contact with the actual brain matter.  The imaging gave the doctor a pretty good picture of it and he will monitor it for growth and any symptoms which may appear.

Meanwhile, Mom is progressing on the slow track to recovery and she’s a tad frustrated (and frustrating, to be honest).

So, in the midst of the “fecal maelstrom” that seemed ready to bury us, the rainbows and unicorns began to appear. (No, really, I did not suffer the head injury.  I swear.)

Nik transitioned into his new placement in the state autism program last Tuesday.  This program is at the same school he attended three years ago.  (Long-time readers may recall that we were so disturbed by the situation at the time —what seemed to be an unwillingness to give the supports we knew Nik needed— that we opted to home school instead.  For the record, we do not regret that decision one iota!)  The autism program in our school district was in its infancy then and we weren’t impressed.  Granted, Nik was in a very different place and needed different supports than he now needs.  None the less, the idea of “returning to the scene of the crime,” as it were, really left us less than inspired.

Funny, isn’t it, how time can change everything?

Today, the program is incredibly well-organized and offers significant supports to students and their families.  Nik is currently in a more restrictive setting, that is true, but it is what he needs right now.  He is only one of five students in a classroom which encompasses kindergarten, first, and second grade.  Each student has full one-to-one support and unlimited access to a sensory room, an adaptive playground, adaptive PE twice a week (as well as music) and daily swimming sessions.  Yes, daily.

On top of that, the whole team really made it clear at the outset that they were interested in helping Nik and were willing to make the personal investments necessary to do so.  Before we even had our intake meeting, the speech therapist made contact with the consultant from PRC (makers of Nik’s speech generating device) and arranged for training sessions for the entire team— including a full day, on-site training in early December.  I still get kind of teary thinking about this team of people who want to learn how my son communicates and how to communicate with him as quickly as possible and how to incorporate his speech device into all aspects of his day.  It’s a complete turnaround from our most recent experience.

In the few days Nik has been in school, he has been so much happier and calm.  Sure, we did start him on Abilify in the middle of the week, but the change was obvious even before the medication was introduced.  After his first day at school (and swimming! Did I mention? DAI.LY!?), Nik actually slept nine hours through the night; he hasn’t slept like that more than a handful of nights in three years!  Something about that deep pressure from the water.

Another facet of this autism program which really appealed to us is the fact that they offer respite. We haven’t been able to get respite for years because Nik wasn’t considered “disabled enough” or medically fragile enough for us to need it.  We were told we made too much money to qualify unless I went back to school or work full-time.  Yet, we don’t make enough money to actually be able to afford to pay anyone out-of-pocket.  Funny, I guess parenting and homeschooling a child with multiple disabilities wasn’t enough?  (Political aside: I wonder if the powers that be which make such policies will ever realize that no amount of money in the world can counter the toll of chronic sleep deprivation, stress, and worry which is exacted upon not only an individual but on an entire family? But I digress…)

So, yeah, respite.  Trained respite.  In our home.  When we need it. *hopeful, happy sigh*

Sure, there will adjustments and there will be struggles— for all of us.  But, overall, I feel really good about the change.

The possibilities seem endless.

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Um, hi.  Yeah, I know I’ve been AWOL for a while.  I’m not even going to try to relate everything that’s gone on in our lives since my last post.  Well, okay, for the benefit of the fourteen faithful readers who keep checking back for posts, I’ll try.

  • Nik’s been making amazing progress with his “talker” (speech device).
  • Nik’s made tremendous gains in eating “real” food.  Turkey sandwiches, chicken, spinach (!!) and the like.
  • We’ve hit upon something we think might be at the root of  Nik’s gawdawful gastric troubles.  But it’s complicated and difficult to explain.  It’s still a work-in-progress so I’m not ready to write about it yet, sorry.  If we’re right, it just might help us all sleep again!
  • Nik’s been battling rampant ear infections…again.  On and off since Memorial Day.  We see the ENT (again!) tomorrow to discuss removal of yet another tube and whether or not to replace them…again.
  • Nik’s learning to play in my sister’s pool without his swim vest.  As long as he has his arm floats, he does just fine. He can now doggie paddle the length of the pool a couple of times over. The boy adores the water, for sure! Nearly every day the first words out of his talker are “Go swimming. Cool.”  Yes, we’ve figured it out; he really does say cool when he means pool.  Sometimes he’ll even voice the “puh” before touching the button for cool. It’s adorable. And annoying.  But mostly adorable.
  • Sadly, the relationship between Nik’s ear infections and lots of swimming? Pretty much a one-to-one correlation. Which, no surprise, also correlates directly to broken sleep. GAH! With this latest heat wave, we’re willing to forego some sleep in order to satisfy the boy’s pool cravings.
  • And, last but most definitely not least, Nik has returned to school.  Today was his first (part) day.  This topic merits a separate post for so many reasons.  For now, though, suffice to say it’s not a perfect situation but it’s so much better than we could have anticipated.  Where we once felt sick and hopeless about the idea of putting Nik back in school, there’s now a glimmer of hope.  It may be elusive— like that pot of gold at the end of the rainbow— but we’re going to chase after it with all we’ve got.

We’re ready, Nik’s ready.  I hope school’s ready for him!

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