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Sorry to disappoint, my friends. I don’t have a pithy, meaningful or otherwise significant post to share tonight. The demands of the day and the need to prepare for an early morning appointment with Nik have me recognizing my limitations and acknowledging that I need to take care of myself; Nik and I will be on the road at sunrise and, though he’s grown and changed in so many amazing ways, his needs still require a great deal of logistical planning.

I am grateful for my ability to recognize and honor my limits. Tonight, I will don my Oxygen Mask and bid you sweet dreams until tomorrow.

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Nik can only verbalize a couple of words and string together letter sounds. When he does vocalize, it always sounds kind of breathy, like he has mild laryngitis. Actually, he might; we’re not sure how much damage may have been done to his vocal chords as a result of being on a ventilator for so long. But I digress…One of the words Nik can say with some degree of consistency now is “Mama.” It melts my heart every time he says it, despite the fact that he only ever says it with prompting. Like tonight.

Earlier this evening, Nik and I were playing and laughing together. I leaned over to kiss him on the forehead –just because I can. I always tell him how much I love him when I do that. I don’t know, maybe I’m making up for all those lost days of his infancy when I couldn’t just scoop him up in my arms and smother him with kisses for fear of dislodging tubes and intravenous lines or possibly upsetting his tiny and fragile body. All I know is showering my son with affection is an addiction I just can’t quit. I don’t want to until he forces me to stop!

After kissing his head and telling him I love him, I asked Nik if he could say “I love you, Mama.” He leaned down to his talker and hit the sequence of icons to tell me. I smiled, but I wanted more. I pushed. “No, baby, can you say it with your voice? With your mouth?” as I laid a finger on his lips. “Can you say, ‘Mama, I love you’?” I knew he wouldn’t or couldn’t but I had to try.

He looked at me and grinned and whispered his breathy, disjointed “Ma-ma” and then kissed me softly on the lips. I laughed and said “Do kisses mean ‘I love you’?” He tipped his hand in his own rendition of yes in sign language. “Can you say it again, baby?” I asked. He leaned toward me and put his face up to mine; I felt the whisper of an angel wing on my lip and heard him rasp “Ma-ma” once again.

In the instant that I blinked, he was whirling away from me toward his LeapPad books, humming the Spongebob Squarepants theme. Don’t ask.

A few hours later, not too long after I’d put Nik to bed and sat in the dark listening to his gentle snores, the telephone rang. It was my husband’s employer; Niksdad was asleep so I took a message. They had called to update Niksdad on the condition of one of his patients who had gone to the hospital the day before.

Shaking, I went upstairs and kissed my baby one more time and let the tears fall.

Somewhere tonight, another mother of another child with special needs kissed her boy for the last time. My heart aches for her pain.

Tonight, I am grateful for every kiss, every sigh and snuggle I have with my precious boy. Hug your children tight. Cherish every moment.

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It’s been roughly a year since my son’s sleep troubles have decreased dramatically. For years, yes, you read that right, years (five, in fact), my son would wake in some sort of heart-rending distress multiple times a night at roughly ninety-minute intervals and they lasted about 20-45 minutes each. To say those were brutal times would be a gross understatement.

It took a long time to finally debug what we think was the root cause; if I told you, you’d look at me like I had three heads. Even our son’s fantastic neurologist took a while before he believed we were right.  But, suddenly, the screaming, writhing bouts of self-injurious behavior…stopped.

The transition from those hellish years to sleeping through the night has not been without some bumps along the way and I’m not sure I believe we’ve fully crossed a threshold yet. But, here we are several months later and we have all finally retrained our bodies to sleep (mostly) through the night. Nik still has nights where he is up for a few hours in the middle of the night, but that’s more often the exception than the rule these days and usually only when something is brewing with his health.

I am extremely grateful that we now have a home health aide here to help us every night during the overnight hours. My husband works nights and I have to be able to function to get Nik ready for school and doctor’s appointments and to manage the day to running of our home which includes managing all aspects of Nik’s educational and medical plans and needs. It is a full-time job and my boss can be kind of, well, a bitch sometimes — especially when she doesn’t get enough sleep!

So we’ve been on cruise control for a while now and I was just starting to feel cocky. Until Super Storm Sandy came along; Nik’s sleep hasn’t been right since. He didn’t have any obvious anxiety from it, but his sleep has definitely suffered. Nik’s gone from sleeping up to nine hours straight through the night to either being awake for a few hours then going back to sleep or, worse, simply starting his day a mere small handful of hours after I’ve gone to sleep.The poor boy was so exhausted all day! I thought (ok, PRAYED) he would nap this afternoon so we could push his bedtime out a little later to help make the transition to Standard Time a little easier. Ha!

Nik came sooooo close to falling asleep on the sofa a few times and then would rebound suddenly. It was an ugly sight to see; the poor child was so dysregulated and exhausted that I described him to some friends on Facebook as being like a malfunctioning robot. At one point, immediately after he had eaten lunch, Nik got very upset because he couldn’t have his ice cream — which he always has after dinner. He started to fray around the edges and tell me he was hungry and asked me to make dinner. Then breakfast. Then lunch. Then dinner. Then ice cream NOW. Then the tears and frustration came followed by kisses and soothing from Mama. Then it all repeated in a seemingly endless loop. By late afternoon, I knew I had to get him out of the house to keep moving. We went to Target where he was…a complete angel.

As soon as we got home, the demands for dinner and ice cream began again in that anxious, perseverative kind of manner. He only ate half of his dinner before deciding he was done.  By six o’clock his body thought it was later (and he’d been up since the wee hours) and he was starting to fall asleep on the sofa for real this time. I helped him don his spiffy new pajamas, got all his myriad meds into him and brushed his teeth before heading upstairs.

Nik never actually made it upstairs under his own steam.

Halfway up the stairs, he stopped, turned around and put his arms up for me to carry him. “No, baby, you need to walk; we’re almost there,” I said. He looked at me and his lower lip quivered. He shook his head NO then sat in the middle of the staircase, laid his head on the stair above where he sat and closed his eyes. He’s such a little stinker. I convinced him to make it up to the top landing before I scooped him up and tossed him over my shoulder.

I think he may have been half asleep before his head even hit the pillow, but as I turned out the light and leaned over to kiss him on the forehead, he snuffled and raised his lips to mine. Resting a palm against his soft cheek, I smoothed his hair and whispered my goodnight. It’s a ritual I started when he was in the NICU so he wouldn’t ever feel alone in the middle of the night. I have whispered those same words every night since he was born. Even on the very rare occasions when I’m away from him, I make my husband put the phone to Nik’s ear and I softly say —

“God bless you and the angels keep you overnight, baby. I love you. I’ll meet you in Dreamland with Papa and I’ll be here when you wake. Good night, little bear.”

Today, tonight, I am grateful for sleep and the rituals surrounding it. For the progress my child has made in sleeping again and for the fact that he is here for me to kiss and snuggle each night. There were so very many scary days and nights in his early life when I thought we might not have this time together.

Sleep, my child, and peace attend thee,
All through the night
Guardian angels God will send thee,
All through the night

Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

Angels watching, e’er around thee,
All through the night
Midnight slumber close surround thee,
All through the night

 Soft the drowsy hours are creeping,
Hill and dale in slumber sleeping
I my loved ones’ watch am keeping,
All through the night

All Through the Night ~ a Welsh Lullaby often associated with Christmas

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Today, I give thanks for peace.

Not peace in the sense of wars and cease fires, disarmament or global resolution – though that would be nice. Nor am I talking about that deep and abiding sense of inner peace – that all-encompassing knowledge that all is as it should be in one’s world and the path forward can be visualized if not actually seen. My world, my daily life, is far from that predictable!

The peace of which I speak is simpler, more fleeting.

It’s the lingering minutes of quiet after my son has fallen asleep on the sofa while my husband is sleeping before he goes to work. That rare window when the cats are asleep and the only sound I hear in the house is the gentle trickle of water from their fountain. Or the subtle creaks and groans of the windows as the wind picks up outside.

The peace of knowing I can drink a cup of tea while it’s still hot. Or go to the bathroom without a visit from my son – or one of the cats.

I give thanks for the peace which settles into my body– no matter for how short a time – as it relaxes, relieved of its state of constant vigil. A reprieve from the coiled tension required to spring into action to keep my son out of harm’s way due to his utter lack of a sense of danger. Peace even to my ears – respite from the perseverative demands of “go car mama” or “pretend doctor.” The constant refrains of  songs from Mary Poppins, She’ll be Coming Around the Mountain, or the days of the week songs in all their various renditions available on YouTube.

Peace.

Those rare moments of quiet, when the tension drains from my body and my mind slows from its constant whirl. Those infrequent times when I can put aside the constant worries about my son’s fragile health, about his uncertain future. About our finances and our future plans. When I can shut out the world for just long enough to really catch my breath.

In those rare moments, I find I can breathe more fully, more consciously.

Deep breaths in… Slow, cleansing breaths out.

In so doing, I gently refill that well within me which, far too often, is on the verge of running dry.

In the quiet, I breathe in peace.

Blessed, blessed peace.

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[Ed. Note: November is National Blog Post Month (aka NaBloPoMo; click to learn more about it). While I hadn’t set out to return to my blog with any specific plan, I stumbled onto another monthly blogging theme – Thirty Days of Thanks. Since November is the celebration of the Thanksgiving holiday in the U.S., I decided this might be a nice way to jump back into my blog and reconnect with you, the faithful readers who keep checking back and dusting off the screen. I’m thankful for you, too.]

In the midst of a tough day, there are these golden moments for which I am so very thankful…

Nik asked me to come play with him. It’s the first time, ever, that I can recall him using actual words to make such a specific request of me. He stood at the gate in the playroom, resting his device on top; “Sit, Mama, play” he implored with his whole body, making full eye contact. Both my child and my heart would brook no resistance. For nearly twenty minutes, we drew scribbles, shapes and letters on the iPad as we sat on the sofa, Nik’s warm little body leaning into mine as we wrote and made sounds together.

It took coaxing and more than a little prompting at first, but we took turns drawing the lines to complete the letters.

“Nik, draw a line down, baby.” With a little assistance, he did. Then I drew a line down. “Can you draw the line across to make the letter A?” With a sure hand, Nik dragged the stylus across the screen. He looked at me with a questioning look and intoned “Aaaa” to tell me he knew we had just made a capital A. Repeating the process for the letter B, I had Nik draw the line down then I drew the “bumps.” Ever the perfectionist, when my marking was bigger and there was a gap at the bottom of the letter, Nik tried to lengthen his first line with interesting results.

“Great job, buddy! What letter did we make?” His eyes lit up as he said “Buh” and shook his hand in an approximation of the sign for the letter B. And on we continued, sometimes hand-over-hand for the harder, curved letters, all the way to G.

Knowing he’d reached his limit, I let Nik take the lead. Thinking he would take the iPad away from me and turn on his music, I was surprised when he thrust the stylus back into my hand. “What do you want, love?” I smiled. He tapped the blank screen then signed “Please.”  “Do you want mama to draw shapes, numbers, or letters?”

I waited while he contorted his sweet little face with a mighty effort. My heart was about to shatter with shared frustration as I watched him, knowing he was trying so hard to form a sound. Just as I was about to tell him to use his “talker,” he let out a series of short, breathy sounds which, I swear, sounded like he said “ABC” as one word… a la Big Bird’s song. My eyes may or may not have gone a little wide and gotten slightly misty when I asked him, “Did you say A-B-C, baby?” He signed “please” again.

After a few rounds of drawing ABC’s and singing along, it was clear; Nik was spent and needed a break so he got up and started wandering in the playroom. As he walked, I took the iPad and wrote the word hammer.

We’ve been struggling for a very long time to figure out just what, if any level of reading comprehension Nik has. His cognitive and communication disabilities make it nearly impossible to test with any reliable accuracy. We know he can spell and decode words, but we can’t quite tell if he understands the words he is reading unless they are paired with a spoken word. Because of his disabilities, Nik relies heavily on auditory reinforcement – pairing the sounds with the visuals.

I held up the iPad and showed Nik the word. “Can you find this, sweetie?”  He approached the iPad and traced his finger across the word, much as an early reader does when keeping their place in a sentence on a page. I knew he was decoding it –sounding it out in his head. I waited as he did it again. He cocked his head to the side. “Where is it, love?” I prompted. He looked around the room a bit before he spotted it. Nik walked right over to the reflex hammer from his doctor kit and brought it to me!

Next, I wrote vest. Seeing, decoding, understanding; Nik brought me his swim vest. Feeling giddy, I wrote 3 socks; it was a long-shot. Nik struggles with numbers and counting so I wasn’t sure if had set him up for failure and frustration.  There was two pair of socks on the floor by the laundry closet door.  Again, the finger, the decoding, the head tilt…and off he went toward the socks. Nik immediately picked up two socks; it made sense as we sing about how “shoes and socks will always come in twos.” He hesitated.

“How many?” I prompted. He looked at me for a moment then bent over and picked up… one.more.sock.  He brought me exactly three socks. Not four. THREE.

And on this went for a few more words.  I added some complexity—

“Get orange hat.” He got it.

“Put hat on.” He did… on my head.  (Smart alec kid! Who says kids with autism don’t have a sense of humor?)

I admit, “Put hat in blue bucket” may have been pushing the envelope a bit. He struggled with that one.  But…

NIK READ. Like, really, truly read! And he understood what he read!  I didn’t speak the words at all and gave him NO help other than asking “How many?” for the socks.

He.Read.

Signaling the end of our play time, Nik walked to where I sat on the sofa, took the iPad out of my hands and turned on his music. Without so much as a backward glance my way, he crossed the room, turned the bucket over and climbed on top to sit by the window.  The message was loud and clear – “All done, Mama.”

Somehow, I think we’ve turned a page. And, oh, my little bear, this is just the beginning of an exciting new chapter.

“The journey of a thousand miles begins with a single step.” ~ Lao Tzu

“I am unwritten, can’t read my mind, I’m undefined
I’m just beginning, the pen’s in my hand, ending unplanned…”

“Unwritten” (N. Bedingfield, D. Brisebois & W. Rodriguez)

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For whatever reason, I’ve been in a funk this morning, feeling like I don’t know where my life is headed or who I am anymore. Again.

You know, all the existential stuff which creeps in when your child is having a rough time and people around you seem to be zooming on with their lives.  (Yeah, yeah, I know…the grass is always greener in our neighbor’s yard, right?)

It was no coincidence, I think, that I got an email telling me I had videos on Google Video that needed to be migrated over to YouTube.  So, I did what any self-respecting person with too much to do and not enough time to get it all done would do…I spent some time strolling down memory lane.

Most of the videos are roughly five years old and capture some milestones we’ve long taken for granted. Watching them this morning, however, took me right back to the days when I knew, without a doubt, my purpose in this life. No accidents, eh?

I thought I would share one in particular which newer readers (and friends) may have never seen. I had it on my blog when I was on the blogger platform several years ago. It’s a video love letter to Nikolas from Niksdad and me.

If you are sentimental, you might want to have a tissue ready.

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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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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.)

HE.READ.

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

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Did you know…April is Autism Awareness Month? If you don’t live under a rock, you’ve likely seen the latest figures released by the CDC last week regarding the rise in the rate of autism in the United States.  If you missed it, here’s the bird’s-eye view:

1 in 88 children  ~ 1 in 54 boys  ~ 1 in 252 girls

I haven’t yet had a chance to write my own post about what we are doing for Autism Awareness Month and World Autism Awareness Day. ( Read last year’s post here.), but I wanted to make sure I shared these posts from some of my very dear friends:

Mom-NOS: “The blue light reminds everyone who sees it that people with autism are…”
And as he stared out into the blue, he answered softly in a voice that came from a million miles away: “Awesome.”
(You can read the full post here.)

Jess: “Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.”
(You can read the full post here.)

Did you know that April is also the Month of the Military Child? Our military families are not immune to the effects of living with and loving family members with autism. In fact, they need our help.  Please, take the time to read the words of my friend, Rachel, who has been fighting tirelessly to change the inequities in the military health care system with regards to autism services.

In a post featured by Autism Speaks, Rachel writes: “As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.”
(Read the full post here.  It includes information on the Caring for Military Children with Autism Act and how to contact your Congressional delegate(s) to ask for their support of this important legislation.)

I hope you will subscribe to the posts from The Thinking Person’s Guide to Autism. All month long, TPGA is featuring “Slice of Life” posts from Autistic people of all ages. Because, awareness is great but ACCEPTANCE is so much more important.

And, finally, I’d like to encourage you to visit the Autistic Self Advocacy Network.  The name speaks for itself as the organization empowers Autistics to speak for themselves.

If you don’t live with autism, it may be hard to understand why it is so important to listen to the voices of those who actually are autistic. These are the voices which will help us shape the future for our children, open the minds (and doors!) of employers, educators, business leaders and politicians about what is possible for so many people who are otherwise marginalized because of myriad manifestations of autism. These are the voices which can help us establish more and better supports for adults with autism once they leave the school system.

Their voices can help shed a light on the tremendous potential within each person regardless of how autism affects them. The potential within each person may not be the same, but the potential to be so much more than what meets the eye is far greater than you might imagine.

Only through dispelling the myths and the fears, through support and acceptance —true acceptance, can we empower each autistic person to meet their potential.

So, um, I guess THAT is what we’ll be doing for the month —and always; helping our son find his “voice” and meet his potential.

What's not to love?!

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Nik’s latest thing he likes to do is make patterns on the inside back door with his magnetic letters. He does it in a very deliberate and methodical fashion, humming the letter sounds he can make as he goes. I watch, fascinated, trying to figure out if there is a rhyme or reason.  There is, I can tell, but it may not always be the same.

Some of the elements remain constant— his desire to group letters together or to alternate the capital and lower case letters.  Sometimes, there are linear pairs of letters marching up and down the insides of the door frame.  Those patterns are usually pretty distinct and I can see that, perhaps, they reflect a need for order and control.

Others?  Crooked lines and clusters of seemingly random groupings of letters turned in all directions —some of them aren’t even “complete” in that they don’t  contain all of the same letter. For instance, in a grouping with the letter S, Nik may have them arranged in some pattern either by direction or size.  But there will be a renegade S on the periphery of another group…slightly out of place. Or is it?

Still other times? Words. Hidden within the clusters and the seeming randomness there is meaning.  So much like my boy himself.

Word find challenge: ASK, CAP, JOB

Oh, to know for a fraction of a second what goes on inside his beautiful mind…

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