Our journey in the Autism Spectrum

Posts tagged ‘exhaustion’

Surf’s Up

[ Ed. Note: I originally wrote and published this post for Cheairs at Redefining Typical in May of this year. With this summer’s vacation coming up, that hopefully will include a trip to the beach, it has me thinking about “the surf”. Since the original publishing I have  found a couple of pictures from last year’s trip to the beach.]

My son was diagnosed with PDD-NOS and ADHD at the age of 4. This was a year and a half ago. I had  suspected something was different about my little dude since he was about 2 years old, but that didn’t make hearing the words from a medical professional  any easier. A part of me felt a moment of relief to finally have an explanation for all of the struggles we had been going through up to that time. A “yes!” moment.

Then suddenly I felt as if I couldn’t breathe. It was as if I had been yanked down under the water. It was real for me.  Something physical. It was as if I was suspended in the water just below the surface. I could see but everything looked like I was peering through murky water. I could hear what the pediatrician was saying to me but he was muffled somehow. From that moment I associated the Autism Spectrum as fluid, always moving, always changing and all around me. A watery, living thing, this Spectrum.

I remember having to concentrate to breathe and struggling to try to grasp what the doctor was saying to me.  My husband, Grant, was off  literally chasing our son through the medical building because Henry just could not take being cooped up in the exam room any longer. So I was left there to try to take it all in and remember so I could share with Grant later. Our doctor was giving me literature on Autism and ADHD, a brochure for a local autism service, a business card for an agency for O.T., speech, and sensory integration therapy. I remember talking briefly about ADHD medications and do we medicate or not medicate? He wanted us to make an appointment in a month without Henry so we could discuss how he’s doing and to talk more in-depth about medication options or the option of no medications. He wanted to talk to us without distractions. He had experienced parents like me before. He knew I was probably barely retaining a fourth of what he was really saying. I realized even then that this was the doctor for us! We adore him!

Now a year and a half  later, occupational therapy and sensory integration therapy, speech and language therapy, listening therapy, evaluations, more doctor appointments, IEP’s and ABA training; it’s all still around me. I am just off shore~drifting, suspended just beneath the surface. Some days the waters are clear and calm. The waves move me back and forth, up and down and sometimes I even get to the surface to catch my breath. But another giant wave will come that pushes me back further down or an undertow that pulls at me~ always still all around me. (Click here to read about The Undertow). Doubt and worry cloud the waters. How can I help my son to navigate these waters of the Spectrum when there are days I don’t even understand it. The meltdowns and anxiety for no apparent reason! The echolalia, scripting, jargoning! The need to control. absolutely. everything. around him. The deficits in his social and emotional areas! I WANT to understand. I TRY to understand. What is going on in my son’s head? It is a question that is with me every minute of every day. Perhaps only Neptune knows…

My son has a diagnosis ON the Autism Spectrum. But our entire family is immersed IN that Spectrum. It is all around us. The realization that we are never getting out can be overwhelming. Heart-breaking. But I think because my heart aches continually, it is in my nature to try an embrace it~ all of it. The good. The bad. And sometimes even the terribly ugly. To own it. To make this Spectrum ours. What choice do we have? Because the waves will continue to come…

“You can’t stop the waves but you can learn to surf.” ~ Jon Kabat-Zinn

The continual crash of the waves can be too much some days. On these days I am physically tired from it all. But again, what choice do I have but to reach for my board and try to learn to surf those waves of the Spectrum?  To own them. To make them ours. Surfs up, my little dude!

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Plain and Simple

April is over. Autism Awareness month has passed for another year. This past month has been filled with blue lights and t-shirts, blog posts and discussions. I have been overwhelmed by the support of our family and friends. This means more to me that I can ever express! Knowing those of you who were willing to turn on a blue light or wear a puzzle piece t-shirt, or forward a blog or share my Chameleon Facebook page to spread awareness to those who may not know or understand about Autism Spectrum Disorders means the world. And the tireless efforts of the parent-bloggers out there are incredible! (I refer to the list of some of my favorites listed down the right-hand side of my blog page).

But despite the added awareness, our daily lives have gone on pretty much same as usual.  We have our  ups and downs and our tribe is very well aware every day the impact that autism has on the entire family. And there are many days where part of me wishes we didn’t have to be so damn aware.

It’s tiresome. Exhausting. Many times I just want to be done with it. I don’t want to talk about it, read about it, or blog about it. And then I check my e-mail, my Facebook. I see that friends and family have commented on my page or on this blog, showing support, letting me know they are there for us! Everyday I get new blog post notifications and status updates from some of the most wonderful, inspiring and just plain amazing people…most of them moms, who write with such beauty and HEART, about their children, their lives with Autism. Their stories may not always be pretty or fun or upbeat but they are always beautiful. And all of this helps me to keep going for my son. To keep writing. To keep advocating. To keep learning. Perhaps that is why we haven’t been able to bring ourselves to change out our blue porch light. We must keep going.

I’ve been trying to search for just the right words to express just how huge my feelings of appreciation are for everyone. Two little words, “thank you”, just don’t seem enough. So, I ask each of you, and those of you with children on the Autism Spectrum will most certainly understand this, imagine someone you love so dearly that cannot express themselves or has trouble with even the most basic of tasks. The frustration of it all. And now, imagine that they completed a task or used their words for the first time…how something so plain and simple can feel so HUGE.

With that in mind, I say “thank you”.

Sleepless in St. Louis

Having a child that does not require much sleep and gets up frequently throughout the night can  be very tiring, literally speaking! My son is five years old and for five years we have had countless nights with little to no sleep.  We know well the path of walking through our days weary, bleary-eyed, and in a fog. We have spent many days beyond exhausted! 

We don’t usually know when it is going to be one of those sleepless nights as Henry goes to bed usually quite well now. Though getting him to bed fairly easily was a long time in coming and quite a spectacle! (And probably warrants a blog post all on its own!) No, Henry and Lucy went to bed as usual last night with what we would consider some typical 5 and 4-year-old antics  but they did settle down and seemed to fall asleep soon after we tucked them in.

When sleeplessness occurs, Grant generally gets the “first” shift  and we always hope for that being the “only” shift. Let me add in here that Grant also does not require a lot of sleep and can fall back asleep in about 2 seconds. I, on the other hand, require much more sleep and it takes me much longer, sometimes hours, to be able to get back to sleep. So over these years Grant has taken on most of the burden of the night shift.  But even he has his limits.

Here is how these sleepless nights go with last night being no exception: Henry wakes up about 3 hours after he has fallen asleep calling for Daddy. Grant will go in and check to see if Henry needs to use the bathroom, tuck him back in bed and sometimes lay down with him. Sometimes for a few minutes, sometimes for more than an hour. Did I mention that Grant can fall asleep in about 2 seconds? Grant will finally crawl back into our bed at some point. Henry will lay in his bed alone for a short bit but if he doesn’t fall asleep he will be back up calling for one of us. On occasion I do get up to take the first shift but most often Grant tries to let me sleep as much as he can until he just can’t take anymore and then I get called in.  

Now, here is the fun part,  repeat the above actions 3-4 times a night. Yes, you read correctly: three to four times a night!

Sometimes Henry will doze off in between these times, but generally it seems that he is up for the duration, eyes wide open, staring at the ceiling, fiddling with a toy or book or his bear. 

For a long time we just could not keep him in bed on these nights or a screaming meltdown would ensue. No one wants that at any time of day but I for one, REALLY do not care for this at 2AM! And 3:30AM…and so forth. Most times Henry would just want to wander/pace the house or go down to the family room to watch TV. To avoid meltdowns, one of us, usually Grant, would go with him and try to doze on the couch.

Now for added fun imagine doing this not only 3-4 times a night but SEVERAL times a week! Yep! From about the time he was a year old until almost 3 yrs, this was a regular routine most nights of the week. And as bonus when Henry was about 17 months old, we added his newborn sister to the night shift. Grant and I have lost about 3 years of our lives!

Over the last 2 years these episodes have finally decreased to one or two nights every few months or so. Usually now Henry will go back to his bed. Sometimes he is able to get up, go to the bathroom and back to bed and asleep on his own!

What is amazing about these sleepless nights is that most often the next morning Henry won’t really “sleep in”. He gets up about the same time he does usually and is good to go for the day with just maybe a few hours of sleep! I can count exactly 3 times in the last year when after pulling an all-nighter that Henry did actually fall asleep later the next day.

But not today. Have I mentioned how tired I am today?

Grant and I have tried many different things over the years to help get Henry to sleep and STAY asleep. Some helpful, some not so much. Last year I went to hear a nurse practitioner specializing in sleep disorders from a local sleep clinic give a talk about young children and sleep issues. I enjoyed her talk and felt really good that Grant and I had tried a lot of the tactics she recommended. Some worked. Some, again, not so much. At the end of her talk she opened the floor up for questions. I spoke up and asked if she had any good suggestions or books or resources for dealing with sleep issues for a child on the Autism Spectrum and with ADHD.

After a brief pause she said, “None that I like.”

Another pause and then she added, “If it is any consolation, I have found that many children on the Spectrum do seem to grow out of their sleep issues.”

I thought, “Really, Lady? That’s it? No. No, I don’t find any consolation in the hope that he hopefully will out grow this! I am TIRED! Mentally, physically, emotionally. I can barely see the nite-lite on in the kids’ room at 2AM because I am so exhausted let alone some possible light at the end of what seems an endless tunnel!”

 We have continued to stumble forward since then and Henry really does seem to be growing out of this sleeplessness. Every few months he will be up again, and again, and again….and we are tired again. Tired still.

Perhaps one day we will look back at these times, those many sleepless nights  and “lost” days and laugh. But quite frankly, I think I would rather take a nap!

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