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Posts Tagged ‘progress’

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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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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And so, without a backward glance, my heart scrambled up the steps of the big yellow bus. His excitement at this new development —this milestone years in the making— was so great, I had to make him stop and turn around to kiss me goodbye. It is no accident, then, that the heavens opened and the sky began to pour down upon me as the bus pulled away from the curb. I watched until the bus was out of sight, letting the rain mingle with my tears.

No one told me putting on my own oxygen mask would hurt so much.

Mother sits down at the table
So many things she’d like to do
Spend more time out in the garden
Now she can get those books read too.

She’s had 18 years to get ready for this day
She should be past the tears, she cries some anyway.

Oh, oh letting go
There’s nothing in the way now,
Oh letting go, there’s room enough to fly
And even though, she’s spent her whole life waiting,
It’s never easy letting go.

“Letting Go” ~ Suzy Bogguss

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I’m a bit behind-times here this week. Nik has gone back to school after a long and challenging (for all of us, but especially so for him) break.  However, he has also come down with either a sinus infection or an ear infection. Or both; we find out when we see the doctor later today.

To counter the elevated threat stress levels today, here’s something which makes me smile no matter how low I am feeling.  I hope it brings you joy, too.

A very belated happy holidays from our home to yours! May 2012 bring you a wealth of good things, good people, good feelings.

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Shine your light down on me
Lift me up so I can see
Shine your light when you’re gone
Give me the strength
To carry on, carry on

Shine Your Light ~ Robbie Robertson

Sometimes, you drop a pebble into a pond and you can see the ripples.  You can know the effect your actions have. Sometimes, the ripples become farther apart —so much so that you think the motion has ceased.

And sometimes, just sometimes, the ripples may not be visible to the naked eye because they have taken on a life of their own. They have gathered a momentum you could not have predicted.  And that momentum is powerful and beautiful.

I’ll let the words of a commenter on my last post speak for themselves:

Heather wrote:

Beth, I just want to let you know that your story had a real impact on Mr. W. We live across the street from Mr. W. This evening he and his family stopped over to personally deliver your story and our blue bulb. In fact, Mr. W. purchased blue bulbs for everyone on our cul-de-sac! We will proudly shine our blue bulb in honor of the child and families that are affected by autism.

For all those who wonder if a simple blue light can make a difference, just ask Mr. W., his employees and his neighbors.

 

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Oh.Em.Gee! He's standing on the sand. Barefoot. Not screaming or crying!

The boy LOVES his water!

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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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