Burning desire

On our way to school yesterday—

NIK: One, two.
ME: I don’t understand; can you use your words to tell me more?
NIK: I.want.candy.one.two.please.
ME: Thank you! Here you go.

I hand Nik two tic tac candies.

It’s a game we play each morning. It started years ago as a way of encouraging counting skills. Clearly, we are beyond that now and we have modified it over time. Now, I use this same exchange to work on language skills and, sometimes, concepts.

NIK: Three, four.
ME: I understand, but you just had two. You need to wait.
NIK: Three, four, please.
ME: Tell you what, buddy, you may have three and four after we pass the fire station.

As I hear the words come from my mouth, it occurs to me—I don’t know if Nik really understands. We don’t exactly narrate our daily travels anymore and we don’t know any firefighters. Other than a character in a story, I’m not sure Nik’s really been exposed to the idea of a fire station. I mean, we drive past the large brick edifice multiple times a day—on the way to school, on the way home, when we go to the store, the park, the pool.  It is a landmark known to everyone because of both its importance and its location. We take it for granted as simply another part of the scenery.

NIK: Three, four. Now, please, Mama.
ME: No, sweetie. You need to wait until we get to the fire station. Do you know where that is?

I see Nik sign “yes” in the mirror, but I’m not convinced he really knows.

As we approach the intersection, the light turns red; I ask Nik to point to the fire station. He points, vaguely, to the right side of the car; the fire station is on the left. Realizing he doesn’t know what I’m talking about, my heart lurches a little.

In that instant, it becomes vitally important to me that my son understands what the fire house is and where it is— as if it’s a confirmation that he does, indeed, have things in common with his typical peers. After all, all boys love fire houses and fire engines, right? I sigh, wistfully, and remind myself that it’s okay if he doesn’t. Maybe.

ME: (clearly refusing to give up as I point to the fire house on the opposite corner) Nik, look. That’s the fire station. It’s the house where the fire engines live. Can you see it, buddy?
NIK: Fire engine.house. Fire engine house. Inside.
ME: Oh, sweetie, we can’t go inside. We have to go to school.

The light changes and we begin to drive. I tell myself it’s a start; we can keep working on it.

As we drive past the fire station, I hear some rapid vocalizations from Nik followed by a flurry of beeps from his device.

NIK: Fire engine. Sit. Fire engine. Sit.Later.
ME: Can you use a sentence so I understand what you mean, sweetie?
NIK:  I.want.sit.fire.engine. Today. I want sit fire engine today, please, Mama.

And that, my friends, is how it started to rain inside my car, forcing this mama to drive to school without being able to see a thing.  It is also why I am now on a mission to take my boy to the fire station as soon as possible.

Nik during one of his many hospital stays. This was his first birthday.

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Words into action

The natural patterns and rhythms of verbal communication do not come naturally to Nik. Despite the fact that he’s had his speech device for three-plus years now, he still struggles with parts of speech and being able to put words together in a way which is understandable to “outsiders.” It’s just a part of how his brain is wired. Much of Nik’s default method of communication is “telegraphic,” meaning that he will use one word for multiple meanings and that meaning is figured out by the listener who must either be psychic or must elicit more information to determine the context in which Nik means them.

For example, Nik may say “Park Daddy” to mean any of the following:

I want to go to the park with Daddy when he gets home from work.

I went to the park with Daddy this morning.

Will Daddy take me to the park?

I like going to the park with Daddy.

In speech therapy, Nik is working on using “action words” to go with the things he labels. For example, when he says “Park Daddy,” Ms. K will ask what actions he can do at the park– swing, climb, etc. They work on pairing nouns with verbs and reinforcing structure and the relationship between them. It’s a painstaking process which needs to be supported consistently– not just in his twice weekly sessions with Ms. K.

Nik loves to chatter to me as we drive along to the store after school or on the weekends. I try to encourage and coach his language use all the time. Lately, though, I can tell that Nik finds it annoying. I can’t say I blame him; who likes to be grilled all the time, right? Sometimes, he flat-out refuses to participate and changes the subject to avoid the work. Others? He plays me like a fiddle and I don’t even realize it until it’s too late!

* * * * * * * * * *
On the way home from the store yesterday, we shared a small bag of chips. As we drove along, I doled out chips every time Nik asked “more chips.”
“Nik, what actions can we do with chips?”
We’ve done this exercise often enough so I knew, from the silence in the back seat, that he was processing the fact that chips are food and you can eat, bite, or chew food.  Uncertain if I would need to prompt him with possible answers, I asked again.

“Nik, what is an action we can do with chips?”

I heard the quiet beep of Nik activating the screen on his device to answer.

“H-O-L-D bag.”

Well played, son. Well played.

* * * * * * * * * *
I promised Nik we would go to McDonald’s after his therapy this morning. He was extremely excited.  We don’t dine there with any remote degree of regularity; I try to save it for special times (or travel emergencies) and he loves going inside to eat.   On the way to see Ms. K, Nik and I were discussing what he would have for breakfast. He suddenly got stuck in a loop and began to perseverate on eggs.

“Eggs, eggs, eggs, eggs…”

Doing my best to help him break out of it, I tried to expand the language. “Nik, what can you DO with eggs?” I asked.

“Eggs, eggs, eggs, eggs…”

“Nik, there are lots of things we can do with eggs, right? Eggs are food and we can…” I began to sign eat, bite and chew as possible clues for him.

“Eat, eat, eat”  he replied from the back seat.

“Very good! That’s right. We can eat,” I signed. “Or we can Buh…” as I signed the word bite and made the sound of the letter B.

“Eat, B-”

I could tell he was about to spell it out and I started to nod in approval.

“…A-C-O-N. Eat bacon. Eat bacon.”

Yep, I’d say he’s got the important stuff down pat.

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Phone Home

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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Season of change

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 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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Today You Are Nine

Nine? How did that happen? In the blink of an eye you went from my fragile little micro-preemie –fighting for your life over and over again, to my funny, engaging, affectionate monkey!

We still have so many miles to go in this journey of ours together, so many things to learn and so much teaching to do in the world around us. But the one thing I hope you will always, always know is how very much you are loved. How very much you are cherished and respected. And how none of that is affected one iota by the things you can or cannot do in this life.

Happy Birthday, baby. You are my life, my soul, my heartbeat. You take my breath away every single day. You fill me with pride and wonder, perspective and faith. Though our road together has been so very challenging from even before your birth, I wouldn’t change a single bit of it if it meant you were any different than you are today.

I love you so very, very much.

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A Month of Gratitude – Day Fourteen: Little Big Things

Ok, so I know today is the whole Wordless Wednesday thing and I could skate by without a post and just slap up a cute picture of my kid and be done with it. But I can’t because, in this case, the picture is just a small part of the story. And this story is too good not to tell.

We’ve been going through a few bumpy stretches around here as we work to find a new equilibrium. Between Niksdad working nights now and getting less time with Nik, the wonky school schedule, the “super storm,” the broken speech devices (it’s fixed now!), the belly troubles, the ear infections and the early triennial evaluation of every aspect of Nik’s needs and services…yeah, bumpy. When we get into a challenging run of days, it’s easy to forget to look for the good stuff.

Like this:

He’s a great date!

So, what’s so special about a picture of my uber-cute son sipping on a beverage at our local Starbuck’s? The fact that he asked to do it.

Our pediatrician’s office is near a Starbucks with a drive-thru window. Whenever we go to the pediatrician, as we did yesterday for yet another raging ear infection, we stop at the drive-thru for Nik’s favorite treat: lemon cake. Nik only ever gets it after seeing the doctor. I don’t even recall how we started it, but it’s become a part of the ritual, part of the litany he recites endlessly as I drive with his speech device. “Doctor’s office first, lemon cake next!”

Over time, we’ve progressed from sharing a slice between us to Nik hogging it all to himself wanting a whole piece. I usually drive and sing and hand back a bit of cake here and there as we head home on the highway. It’s not exactly the neatest way to do it, but it’s always been such a hassle to try to wrangle Nik in public places with lots of things for busy hands to get into while Mama pays for stuff. In short, it’s been a sanity-saving measure for me.

As we passed the Starbucks on our way to the doctor’s office, Nik kept repeating the word inside on his device. “Yes, baby, we’re inside the car.” “Yes, Nik, we’ll be inside the doctor’s office soon.” I didn’t really understand what he wanted but was following the pattern of AAC use which is that you acknowledge every utterance so as to encourage continued communication. It’s become so ingrained that there are days I have to catch myself from doing this to my husband as he speaks!

I assume that I have interpreted Nik’s communication correctly because I didn’t hear it again. Until  I am about to turn into the drive-thru lane. From the backseat of the car, I hear it…

Inside. Inside, please. Inside, Mama. Inside. Want sit inside.

My boy knows what he wants and can tell me. My miracle child, who was once able to communicate only  through self-injury and tears, can make himself understood without endless prompting or cajoling! The magnitude of this milestone, years in the making, does not escape me. As I pull into a parking space, I am rewarded by the sound of laughter as Nik claps his hands in delight. Clearly, his success does not escape him either.

Once inside, Nik proceeds to use his device to tell the barista “Want lemon cake.” I admonish him to use his nice words; “Please,” he says in the quirky digitized monotone I have come to love. In this moment, the endless hours of teaching, prompting, shaping and modeling fade from my mind as I watch the naturalness with which he connects with the girl behind the counter.

For a fleeting moment, I tell myself I might consider buying a pony if he asked.

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Monkeying around

Nik’s school is on a field trip today to see this movie:

Last night, I sat with him to show him the movie trailer on his iPad to prepare him that his school day would be different from his usual routine. As the video began to play, he snuggled against me and put his head on my chest. *cue lump in throat and misty eyes*

When the trailer finished, Nik reached for his speech device and promptly spelled chimp…

T-I-M-P

The plural? CHIPS, of course.

I almost died from the cuteness.

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One more thing…

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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Possibilities – Part two

I believe that man will not merely endure; he will prevail. He is immortal, not because he alone among the creatures has an inexhaustible voice, but because he has a soul, a spirit capable of kindness and compassion. ~ William Falconer

It’s painful sometimes to see how our lives have changed through the years; how the path has diverged so greatly from where we thought life would take us, what we thought we’d have, where we thought we would be .  The kind of life we would give our children.  The fact that we thought we’d have more than one child or that we are now living on roughly one-third of the income we had when Nik was born but our expenses are pretty much the same or slightly more.  You know, those developmental toys and therapeutic items all add up quickly.  Not to mention time lost from work for hospitalizations, etc.

We know we are certainly not alone in having our lives turn out so different from what we envisioned as young(er) newlyweds and expectant parents.  Each person, each family, carries their own burden of sorrows with them.  Sometimes, they seem so unbearably heavy that there is a very real danger of suffocating under their weight, no matter how hard you try to keep them from crushing you.

Yet, somehow, in the midst of it all someone reaches out a hand through the magic of the internet and makes the impossible, well, possible.  Sometimes it’s with loving and supportive words to let you know you’re not alone and you’re not foolish or crazy— or whatever other self-denigrating adjective you’ve put on for the day.  And sometimes, the generosity of one person sets in motion something too wonderful to imagine it could be real.

The daily struggles to see the forest for the trees in a world of developmental delays, disabilities and medical challenges is difficult.  I try, I really do, to stay positive and hopeful and keep my eye on the bigger picture —and always on the joy that is my son.  But, sometimes, it is defeating to look around and realize there are opportunities I can’t afford to give him.  Not now, anyway.  My husband and I have learned a lot about ingenuity and making-do and we try not to ask for favors or charity.  Certainly not for ourselves and, rarely, for Nik unless it’s vital.

We’ve been blessed with a great state university which has a full-time program in disability studies.  One of the services they provide is an assistive technology initiative where anyone in the state may borrow gadgets, gizmos and devices to try for a two-week period.  It’s kind of an assistive technology lending library.  We’ve borrowed numerous items from them in the past, so when they got on board with iPads, I was excited!

Nik’s cerebral palsy, while appearing mild to the casual observer, leaves him with little ability to hold a crayon or a pencil.  He cannot control his movements enough to do more than scribble on paper no matter how hard he tries; even hand-over-hand is difficult for him when it comes to any sort of writing or drawing.  The concept of a mouse and keyboard are beyond Nik’s cognitive processing ability at the present.  I figured a touch-screen technology would make it easy for Nik to continue to expand his growing love of letters, numbers and words (ok, and YouTube videos, too!) and to be able to express his knowledge in ways that even his speech-generating device doesn’t allow him to at this time.

I’ll be honest, our first trial with the iPad, back in July, was a flop.  My expectations that Nik would miraculously grasp the concept of the programs we tried, would be able to control his fingers enough to create the desired results were too high; I had so much emotion invested in his success.  Nik, quite simply, wasn’t interested.  I returned the device with regret; I had become totally addicted to Angry Birds.  Nik, on the other hand, didn’t miss it at all.

Fast forward a few months.  With the daily exposure to school, Nik’s desire to learn and to do “work” —as he calls it on his speech device— grew rapidly.  It wasn’t until he was hospitalized in late October that I began to think he might be ready to try the iPad again.  The hospital has an amazing, state-of-the-art touch-screen TV/computer system in each patient room.  While Nik was confined to bed for the better part of five days, he was highly motivated to figure out how it worked.  While he couldn’t quite navigate with ease, he definitely caught on to the whole “I touch this screen and something cool happens” vibe.

With the change-over to his new school placement on the horizon, I decided to give the iPad one more chance before giving up entirely.  The difference a few months has made! Nik took to it like a fish takes to water.  He went from only mildly curious to avidly obsessed with the First Words spelling game (trial-version) and some of the simple matching and puzzle games.  His rapid facility has amazed us and given us significant hope that this could be a technology which would be useful for him in school.  But, we also knew the price was out of our reach.  Not just now but for quite sometime.

I posted some pictures of Nik with the iPad on my Facebook page and people began to comment that we should get him one.  I made it clear it was out of our reach right now.  That’s when the angels, the unicorns— the fairy-godmothers struck.

Shivon— who has a world of great karma due to her, I swear— sent me a private message to ask if she could set up something for people to chip in for an iPad for Nik.  I didn’t answer her for two days as I battled with my pride and my fear that people would think we were being greedy or presumptuous.  My love for my son and my belief in the possibilities before him won out. I told Shivon it would be ok.

Unbeknownst to me, while I was hemming and hawing and stalling, Shivon had already put her head together with Jess and Shannon to figure out the best way to achieve the goal.  Once I gave the green light, they were off and running.

As the money poured in —from places and people I’ve never even heard of as well as old and dear friends—I felt like an announcer on a public radio pledge drive as I emailed Shivon the updated totals. It was funny— and unbelievably humbling and moving at the same time.  In less than forty-eight hours the goal was not only met, it was exceeded. Nik’s iPad has been ordered!  Shannon even arranged for some of the folks from Moms With Apps to hold an “apps shower” for Nik; they sent codes for numerous apps for free to help us get started.  The generosity has been overwhelming.

I think my tweet from the first night of fundraising aptly sums up how I felt:



I won’t name all the names of the many contributors as I’ll be sending a special thank you to each of them once Nik’s iPad has arrived.  I don’t know if I will ever find words to adequately convey the depth of my gratitude for their generosity or to tell them just how much hope they have extended to our entire family.  Their selfless gesture has touched us in ways they may never know or understand.

But, the story doesn’t end here with Nik.

There are so many families just like mine —families with a wordless child or even adult member with autism.  Families who cannot afford to take advantage of such an incredible technology breakthrough without financial assistance.  Families who may not know the possibilities exist or who are too proud to ask for help.

This year, the HollyRod Foundation is giving away iPads to families who would not otherwise be able to afford them.  There is detailed information on the foundation website, including opportunities for people to make contributions to help others experience the miracle of communication, the wonder of discovery of the gifts which lay hidden within each wordless person.  Please give what you can and share the information with your friends, family and colleagues.  (For convenience, you may text HollyRod to 27138 to make your pledge at any time.)

Your gift, no matter how small, can change a life —a family—forever.

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Possibilities – part one

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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