Our journey in the Autism Spectrum

Posts tagged ‘autism spectrum’

Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

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A Post That Makes Me Gag

My Facebook page, A Chameleon in the Spectrum, has been a little quiet lately. Between work and family, sickness, and trying very hard to get things accomplished around the house, I just haven’t had a lot of time to check in there. This morning I stopped by my page to try to get caught up, perhaps throw out a status post, share a meme, etc. As I scrolled around I noticed that most of my personal status posts, those other than sharing someone else’s post, have been about vomit. Or emesis for those medically inclined. Puke, barf, up-chuck, or throw-up for the rest of us.

It seems I’ve cleaned up at least as much puke this week as I have done in my whole life. It’s one of the few things that truly turns my stomach. Literally. No pun intended.  I really do have to fight to not throw up myself. Our two girls are pretty quiet and “neat” about it. As for the little dude, well ASD and vomit are a horrible combination.

There is much crying and screaming and throwing up all along his way to try to get to our room. The bathroom is right across the hall from his room which he must pass on the way to our room, by the way. As soon as we hear him usually we are able to head him off at the end of the hallway to find he has thrown up just about everywhere except the toilet.  I do my best to calm and support Henry, getting him to lean over “the bucket” or the toilet, rubbing his back while trying not to gag as well. Grant and I have spent hours this week, at all times of the night mind you, cleaning and sanitizing every square inch of the path from the kids’ bed room to hallway to bathroom. (yes, including the walls.) We’ve done LOADS of laundry and thrown out two area rugs to the garbage.  It’s no wonder that I’ve been preoccupied with vomit.

Now, my mother LOVES to tell the story about how when I was a kid, I was the worst for throwing up. There was much crying and screaming and stomping and throwing up everywhere. I remember. I hated throwing up because it completely. freaked. me. out. I couldn’t breathe. My whole body was seizing up and out of control. And what throwing up actually feels like…ewwww!   I  remember when I was throwing up my entire being could only focus on the FEELINGS of throwing up. The term “sensory overload” sounds familiar and seems appropriate here. And I’m not even on the spectrum.

In case, by chance, you’re curious about the mechanisms of throwing up feel free to click here. I don’t need to go  into how this process  affects our senses either as we’ve all experienced it. (You’re welcome.)

I wonder what it must feel like for Henry. All I can imagine is my experience with throwing up multiplied by 100. It’s awful to see your child get sick. When I think about the sensory aspect of it for my son on the autism spectrum…well, it’s just that much worse. So many hurdles for him to overcome. It seems odd to add “throwing up” to that list of challenges.  As he continues to grow and learn and cope, I know he will learn to deal with many things, including throwing up. I just wish it wasn’t such a GROSS challenge. And I certainly hope he’ll learn he doesn’t have to obsess  about  it after it’s over.

 *GAG*

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!

The Rabinowitz Bubble

Oh. Yeah. Autism. We have that here…I “forget” sometimes.

Maybe it’s because we’ve had some really great successes lately or maybe it’s because it’s a holiday and there are celebrations with fireworks and BBQ’s and carnival rides going on all over town; a blatant reminder of where we will NOT be. Perhaps it’s because our newest phase (and phrase) is “I’m scared”. Of everything. All the time. Probably it is all combined with the fact that Henry’s not sleeping at night which means Grant and I aren’t either. Whatever it is, I’m tired of it (literally). And bitter. And sad. I am sick of acknowledging and celebrating our many successes over the past several months only to get kicked in the gut with a reminder that autism is still around with meltdowns, inappropriate outbursts, echolalia, seemingly bizarre behaviors and sleepless nights.  Although it’s not like we can ever really “forget”…it’s some denial, wishful thinking, and hoping…and then there is the guilt for feeling all of the above.

I usually see the good things about autism. The amazing things about our son which are ALWAYS there too! His gift for building, his incredible imagination and way of seeing things around him! His sense of humor and clever mischievousness. His true intelligence! I wouldn’t want to change any of that.  EVER. Our son is perfect just the way he is…

I try to remind myself of how far we have come and our many successes, the great leaps Henry has made lately. These are great, positive things!!! His communication, dotted with insightful comments and thoughtful questions has really improved! His ability to handle visiting friends and family for HOURS is wonderful! Huge steps! This summer we have been able to get out more and more! We have adopted Aaron Likens’ phrase of “expanding our Kansas”. And we have had a lot of good times! But I notice, that the more Henry can handle these visits, the more we are able get out, “expand our Kansas” and hang out and visit with our “typical” friends and family, the more I am aware of how different Henry is; how different our family is. And then comes the gut-kick, that reminder, of how we are anything but typical. That all of these successes for us take so much damn work to get there… and a lot times doesn’t “stick” without a lot more work!

I guess that’s why I like our little Rabinowitz Family Bubble. Here, we are normal, typical, comfortable. Sure the sleep issues and outbursts and other assorted issues still occur but we can look at them as normal daily occurrences and just a part of our way of life. It’s okay. I can “forget” about the autism and comfortably think that EVERY family is like ours. Surely they must be. Right?

I don’t mean to imply that our “typical” friends aren’t wonderful and patient and accepting. They ARE and we are very lucky and truly grateful for these friends! But even as awesome as our “typical” friends are, there are moments, bits of awkwardness, where they just don’t always know how to talk to Henry or deal with his behaviors. I see this. I feel their awkwardness, their not understanding, and I then feel uncomfortable for them. I am embarrassed by Henry’s odd behaviors and inappropriate outbursts.

Now that being said, for our typical friends and family who read my blog, before you call us or email us…no, it is not YOU in particular that I am referring too! This is a generalized expression of our different experiences with our typical friends over time, here and there…so, please, no worries.  I am making no personal accusations or blaming or pointing fingers! It’s all good. It just is what it is. I don’t expect everyone to “get it”. God knows I don’t want everyone to “get it”. With 1 in 110 children born with autism, WAY TOO MANY families “get it” already!

Yeah. Autism. We have that here. We will always have that here. But today I don’t like it. I am not happy about it. I don’t want to even acknowledge it! Today I just want to stay isolated in our little bubble and pretend that we are normal. Typical. Just like everyone else. Another day, tomorrow probably, I will again be able to accept and even celebrate autism for what it is in our lives. Back to work. It will all be okay. But not today. Today I just don’t have the energy for it. Today working with autism hurts and I want to find comfort and respite in our bubble.

A Pengaroo’s “Fun”

On Tuesday I shared my experience dropping my son off at day-camp. If you missed it, check it out here. I’ve been getting inquiries as to how he did/is doing so I thought  I should post a follow-up today.

So, Tuesday, a whole THREE hours after dropping Henry and Lucy off , it was time to head back and pick up them up. Seriously. I was freaking out about THREE hours. Really?!?! Anyway, when I got there Henry was still pretty quiet but it didn’t look like he had been crying or anything and his teacher said he did “fine.” 

A little side observation here: My immediate thought at the teacher’s response  was that clearly, as lovely and wonderful as I am sure this teacher is, she teaches NT kids. Our SSD team would have been doing a happy dance right along with me! My friend, Kara, asked her daughter Ellie, who happens to have Asperger’s, how Henry did and Ellie responded with an enthusiastic, “Great!” Even Ellie gets how big these “small things” can be. And we love them for this, by the way!

Anyway, when I asked Henry how his day went I got a head-down response, “Fine. Can we go home now?” Okay. This was okay. He didn’t say it was stupid or that he hated it so I was actually relieved! Lucy, of course, loved it! No surprises there!  Later I asked Lucy how Henry did at camp.

“Well, he made paint.” Alrighty! Participation is GOOD!

I let the subject drop until yesterday afternoon when I mentioned that Thursday would be another camp day.

“In the Kangaroo room, Mom?” Henry asked. Each of the classrooms in the school has an assigned animal mascot.

“Yep. For summer camp you are a Kangaroo.” I reminded him.

Henry thought about this for a moment. “Wait, I’m a Penguin.”

“I know you are, Hen, but for summer camp you are a Kangaroo and for summer school you are still a Penguin. So starting next week, two days you will be a Kangaroo and two days you will be a Penguin.”

Henry seemed to be relieved by this and I could tell he was processing and the gears were turning in that head of his. “So, I’m TWO animals, right Mom?”

“Yeah, you are, Hen.”

With a smile on his face he said, “Like…like…uhh…like a Pengaroo! I’m a Pengaroo, Mom! Or maybe a Pengo for short. ”

“Dude! You ARE! That is awesome! A Pengaroo!”

“Or a Pengo for short, Mom.”

“Oh right, sure, of course, Pengo.”

“What about me?!?” Lucy chimes in. “I want to be two too! I’m a Fish and a Kangaroo. What does that make me? A Kangaroo-Fish?”

“Yeah, babe, YOU are a Kangaroo-Fish! Or, maybe you are a Fisharoo!”

“Yea! I’m a Fisharoo and Henry is a Pengaroo!”

From Henry, “Uh, Lucy, that’s Pengo for short, remember?”

I think camp will be fun for Henry. At least his version of camp and I think that’s pretty awesome! He just needs time to make it his own. So, this morning I dropped off my Pengaroo (Pengo for short!) and Fisharoo without barely a hitch! Who knows how the rest of the summer camp experience will go but I am feeling so much better about it and I think Henry is too!  

********

Addendum: I discovered later this morning that, Maya, our Respite Care Provider, had talked with him yesterday about camp to see if she could help him talk it out. My message from Maya: We talked about it yesterday. He said that it was scary being with so many new people, so we brainstormed ideas of how to make them “not new”– playing games, sharing toys, asking to race, etc. I told him that every day he goes to camp he’ll get to know the other kids more and it’ll get easier. “The more fun the more you go!” He’s gonna give it a try 🙂 ~ Thank you, Maya! You are truly a gift!

IEP’s and Rod Serling

.  

Kindergarten Transition IEP. These three words  have been ominously rattling, clanking, whispering and shouting in my brain for weeks like some surreal dream sequence from an old Twilight Zone episode. Curse you Rod Serling!

So much information, data and lingo is tossed around. So many people at this one….the outgoing team who we LOVE and our soon-to-be new team who we have never met! Teachers, coordinators, therapists, administrators! That in itself is enough to stir up nightmares!  An IEP meeting is truly a strange world in a Twilight Zone of its own.

The date has been looming and the waiting has been full of anxiety! I like a plan. I am not crazy about change and I don’t like surprises. (unless it’s a box with something expensive and sparkly inside or a winning lottery ticket!)  I just want this to be done and over. Yet…

Now that finally the day is almost here, 44 hours and 30 minutes to be exact as I type this line. I’m getting even more panicky. I am anxious about things going smoothly, of getting the services and support my son needs for the big jump into mainstream kindergarten. I want to start off at this new school with this new team on the right foot. That can make all of the difference!

Am I prepared? I should be but I certainly don’t feel like it. I am finding it so hard to prepare for the unknown! Thoughts and worries are swirling vortexes in my head. I have no idea how this new team executes an IEP meeting. I really don’t have any idea what to expect! What am I forgetting? Have I left something important out of my notes? Am I missing key issues that need to be addressed? Where are my notes? I still have to finish the collage of my son I am putting together for the new team. I feel such pressure to find just the right photos so they can really SEE my little dude. So they can see how smart and funny and GOOD he is. It is so important that they can see his potential so as to help him to realize it.

I have less than 2 days to get focused, get over my anxiety and get on with it. It will be what it will be. For now, my eye is on the short-term prize of just making it through the meeting and then off lunch at a nice restaurant for my favorite lobster ravioli and a glass of wine (or two!) with my husband! By this point I have to think that all will have gone well and we will have navigated through the Twilight Zone. And we are not inviting Mr. Serling to lunch with us!

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”.

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