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!

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”.

April’s Blue Light Special: Autism Awareness

I have been stewing for days, weeks even, about how I could ever compose a moving, eloquent, and passionate blog post urging everyone I know and even those that I don’t know, to Light It Up Blue for Autism Awareness.  I can’t. (But see examples of such posts linked below). Today I have finally realized that the specific words don’t matter. What matters is to just get the word out there. They may not be pretty words or stated in the exact best way but I am putting them out there.

LIGHT IT UP BLUE FOR AUTISM AWARENESS!

There! Done! That being said, now I am asking a favor. If you are reading this post, I am talking to YOU! I am asking that you go out and get yourself a blue light bulb for your porch or any outdoor light and “Light It Up Blue” April 1st and 2nd to kick off World Autism Awareness Month. That’s it. That is what I am asking. Home Depot has even made displays to easily find these blue bulbs! (And for those of you with a “green” conscience, they come in fluorescents, also known as CFL’s,  too!).

For weeks my fellow mommy-bloggers have been publishing blog posts, writing letters, and organizing activities to spread the word about “Lighting It Up Blue” for Autism awareness. They are amazing writers and advocates not only their own children but for all of our children on the Autism Spectrum.  As usual, I am “tardy to the party” and now just trying to hitch a ride on their coattails.

If you read nothing more on this topic I implore you to do just two more simple things:  click here and read this! This is a letter to the President. Our President. Yep, at the White House. It was composed by a most amazing woman, Jess at A Diary of a Mom. So, that is step #1. Now, step #2 is to continue to read the cries and pleas of others out there in the comments section of that letter and to post a comment yourself! It’s easy! I did it: comment #56. Yours’ doesn’t have to be long. It can be just 4 words, “Light it up blue!“. Word on the autism street has it that this letter and comments is making its way all the way to the West Wing!

I hope at this point you are continuing to read this post. In case you are interested, here are a few more beautiful messages written by some of my favorite mommy-bloggers about Autism and Lighting it up Blue:

Aimee’s A Call to Arms at Red Shoes, Autism Blues. Kary at KOAutism regarding April 2nd and Mom-NOS with Don’t It Make My White House Blue. And last but certainly not least, my hilarious, wonderful, brilliant friend, Kara, with A  Message and Around The Stretch.

So, if you know our Rabinowitz tribe personally, please light it up blue for Henry!  Help us spread the word of awareness! If you don’t know our tribe, with 1 in 110 children (1 in 70 boys) on the Autism Spectrum, chances are you know someone affected by Autism! If you are hesitating about turning on the blue light bulb for fear of the questions your neighbors may ask, here are some things you can tell them:

*April 1st kicks off World Autism Awareness month and the Autism community is encouraging everyone to change their porch lights to a blue bulb April 1st and 2nd.

*What is Autism? Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). This includes Autism, PDD-NOS and Asperger’s.

*Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.

Any chance you get to spread the word about Autism, whether it be Lighting It Up Blue or simply sharing one of the above links, this blog post, or to share one of many links that come through Facebook, it would be greatly appreciated by the Rabinowitz tribe and the Autism Community as a whole.

In April we’ve got a Blue Light Special on Autism Awareness! It’s cheap, it’s easy! Light it up blue to help spread awareness!

The Undertow

I like routine. Even if it is the routine of the ebb and flow, the highs and lows, of being immersed in the autism spectrum. I can deal with those waves that produce somewhat of a rhythmic rocking as we float along. The gentle ups of good, easy days along with the downs of harder, more challenging days. It’s all okay. Easy-breezy. We will deal with things and move on as the Spectrum lifts us up and pushes us down throughout our lives. 

But the Spectrum has a fierce undertow. At least my Spectrum does. And sometimes that undertow suddenly reaches up its watery arm and grabs me and yanks me down.

This morning began as an average day for us. Everyone is going about their daily morning business. The usual ebb and flow. The little ones are ready for breakfast and happily come to the kitchen. Lucy is getting her own yogurt and Henry is moving randomly about the kitchen as I get plates and cups out. (This is an “up” wave) Then, what goes up must come down. So I begin my short little dance with Henry to not only get his attention but then to get him to tell me what he wants for breakfast and then have him show me he is ready for breakfast by sitting in his chair. (this little dance is a “down” wave. But just a little ebb. One that is routine for the day).  And these little waves are how we move through our day in just about everything we do. It’s all fine. We are managing.

Later in the morning all continues to go well at our usual pace until…we were in our family room. The little ones were playing happily and I was actually getting some work done at my desk in my office area which opens up into the TV and play area. Henry came to the middle of the room. He looked scared. Tears were welling up in his eyes. I glanced at him over my shoulder from my desk and I could clearly see he was getting upset but trying to fight it. I did a quick assessment of the moments just beforehand. I had not heard any loud noises, no screaming or squeals, or fights over a toy. What the heck happened? And this is where the undertow of the Spectrum pulls me down to its disturbing depths.

“Henry, what’s wrong?”

“Mom, I broke it! I can’t help it! I can’t control my brain. It’s hurting my brain!”  He is crying now and I can hear the anxiety in his voice and almost FEEL it in him as I pull him close while he is physically pressing his hands to the side of his head. He cannot be consoled just yet. He continues to cry out about not being able to control his brain. I finally get him to calm down enough to understand that he broke the lid of the big plastic container we have that stores boxes of puzzles.

I have no idea how or why the lid got broken. All I can think about is how disturbing Henry’s words are. “I can’t control my brain.” “It’s hurting my brain.” He continues to press his hands into his head and lean into me. Hard. I have my arms around him tightly hoping that the pressure will help him.  I am so panicked by his words that I struggle to focus on calming things to say to him. I can’t imagine what he is seeing in his mind at that moment that it is hurting him so.

“It’s okay.” I tell him. “It’s just a lid. Now is the time to use your options map. Remember? Take some deep breaths. Count. Can you tell me if you hurt. Does your head hurt? Do you have a headache, Henry?”

He starts to take a breath but then glances over at the broken lid and starts in about his brain being out of control again. And the crying begins again.

“Okay, Henry, what else does your options map say. Tell me what else you can do when you are upset.”

“Take a break.”

“Yes, Henry, good job!  Take a break!”

“But I can’t! I can’t! I broke the lid and my brain is out of control and I don’t understand! I don’t know!”

Oh God, my heart feels as if it is literally breaking at this point. There is physical pain in my chest and I am willing myself not to freak out over Henry’s words! Focus on the options map I am telling myself! Henry is clinging to me and crying still.

“Okay, Henry, let’s take a break, okay? The options map says we can walk away too. Let’s do that. Let’s walk away right now and go upstairs for a bit.” He literally wraps himself around me, legs and all, and I pick him (which is getting to be no small feat at 40 plus pounds of solid boy!). As we walk by Lucy, I see she is still playing with her Barbie’s and watching whatever is on TV (probably the Bubble Guppies, her new favorite show). I tell her we will be right back.

“Okay, momma.” At 4 years old, she gets it. She lives it. She doesn’t always like it but it seems she has resigned herself to it.

Upstairs Henry is calming down. We sit on my bed and I hold him. When I ask him if he can tell me what he sees in his brain that is hurting him, he still can’t tell me.  I hold him tight and we rock. I tell him that HE is in control of his brain. HE is the boss of his brain and HE tells IT what to do.

He is no longer crying but he keeps holding me tight and burying his head into my neck that is now wet with his tears. When I feel him loosen his grip I move so he has to look at me. (another difficult task!). But he does and I tell him again that he is in charge of his brain. And he controls his brain because he is smart and good and strong!

I don’t know how much of this he actually understood but he said he did and he was smiling at me. Then he started talking about blocks and train tracks and save for the one last tear that was still on his cheek, all was forgotten. Just. Like. That. He was off back downstairs to resume his play.

Inside I am still screaming! What goes on in my son’s head?!?! Why can’t I understand?!?! Why can’t I stop whatever it is from hurting him?!?!

I forced myself to let go of the disturbed feelings I was having. We will deal with those another day. Take that Undertow of the Spectrum!  We have escaped your grasp once again and we swim up to the surface to BREATHE!

For the (Permanent) Record

When you have a child with special needs and/or an IEP (Individual Education Plan) life is full of what seems like endless appointments, therapy sessions,  forms and paperwork, observations, assessments, tests and meetings. And new  lingo!  (This I have not mastered yet but I am sure in time I will become quite fluent!) Once the “IEP/assessment ball is rolling” so to speak, the dominos fall and this is where the  cascade of  the above mentioned forms, testing, and the like, begins. It is at this point I feel I do need to insert here that the forms and evaluations and questionnaires that are sent home can be quite daunting and sometimes just plain ridiculous! Of course, being the type of personality I am, these prove to be a particular challenge to me as I want to always give the very best, most accurate answer I can on every. single. question. I  agonize over each word, each qualifying answer. This is for my son. What if I don’t answer something as accurately as I should and it puts him in the wrong category? What if my answers give the wrong impression that he is higher functioning than he really is and therefore, will not qualify for the help he truly needs? Or what if I answer too severely putting him in a slower category and then he will not be challenged to live up to his full potential? You see where I am going with this?!? It is a nerve-wracking process for me! (And in turn, for my husband as we try to fill these out together, each of us with our own opinions and experiences with our son~it can be frustrating to say the least!)

Because Henry had made so much progress last spring and over the summer, when school started again in August I asked his teacher if we could reassess his IEP. I also asked that his speech/language be re-evaluated because he had not qualified for help in this area previously but with age and time he still has not improved much in his communications skills.  So, back in October we had a meeting to review and discuss Henry’s current IEP and possible evaluation and reassessment to see if he would now qualify for  speech/language therapy and assessment of his relative intelligence (yep, that would be an IQ test).  I do not put too much stock in IQ tests but in trying to get Henry ready for mainstream kindergarten in the fall of this year, I felt this was a good time to have him tested.  I feel it is important for us to have an idea of where his cognitive abilities might lie. Next came the home/parent evaluation forms, more paperwork for us to document Henry’s history and more paperwork and forms for his angel-of-a-special ed. teacher. For Henry, more testing. A few portions of these tests are fun and like games to him. Others are just plain work. I do believe he is catching on and I am wondering what suspicions may go through that mind of his every time he gets pulled out of class.

So, that brings us to last week. (The intended crux of this post.)  We had a meeting to discuss the results from all of the above! Lots of stats thrown on the table, graphs, a  bell curve, discussions of behaviors seen and not seen, more lingo. No surprises. It seems we are all on the same page. What we are seeing at home, they are seeing similar at school. Similar enough anyway. To quote Temple Grandin, “Generally people on the autism spectrum tend be really, really good in one area and really bad in others”. Yep! That’s my little dude!  He is a visual thinker. He does see in pictures. Great builder! A hands-on kid. Not so great in the communication/language or social/emotional areas. Overall, we got some really great news regarding Henry’s potential and what we thought we knew about our son was validated.

So what the heck does all this mean?!? This is what I was thinking after the dizzying array of information that was put before us. Ultimately, Henry qualifies for more help in the area of language and pragmatics! Wonderful! Also, now that he is 5 years of age and heading to kindergarten in the fall, he is ready for his “school age” diagnosis. He does in fact, have Autism. Yes, we know this. We have had the medical diagnosis of PPD-NOS for over a year, along with ADHD.  It is because of those diagnoses we have been able to access special services for our son to help him grow and learn. But now, with this official school age diagnosis he will certainly have the continued support through his IEP’s for whatever help he may need throughout his school years! YES! Great news! I am smiling! I am relieved and happy!

And then I hear the Violent Femme’s Gordon Gano. His voice is saying in my head, “I hope you know this will go down on your permanent record.” Time stops. I am frozen with fear. Good God what have I done?!? Autism. My son has autism. By trying to make sure he gets all of the help and support he needs to succeed, I have succeeded in labeling him. I feel bile rising in my throat. I try to maintain my composure and I keep smiling. Somehow we finish up the meeting. There is chatter about what a good thing this is and how next we will set up an IEP date to include the speech/language pathology and revise Henry’s IEP for the rest of the school year and how we will have to have another IEP meeting just before summertime to discuss and make plans for transition to kindergarten. Great. No worries, I say. Sounds like a good plan. The pleasantries continue until we all go our separate ways.

For the rest of that day and well into this week I have felt as if I am moving in a haze. I can’ t seem to concentrate on anything. Thoughts and emotions tumble around in my head and in my heart. I know in my head that this school-aged diagnosis good thing to get him the support we know he will need and there certainly is no mistaking Henry’s challenges and differences in particular areas. As a family we have not been ones to shy away from talking about Henry’s diagnoses. We are not embarrassed or have any shame whatsoever. We embrace Henry for who he is, differences and challenges and all! But for a few seconds, my heart broke and I panicked. My son has autism. In those few seconds I wished it wasn’t true and I felt guilty about that! I realized in that moment that deep down in an almost buried corner of my heart, there was denial hiding there. Perhaps because Henry’s challenges and differences, though noticeable after spending some time with him, aren’t really all that prominent overall. We can “forget” the autism aspects of Henry. How could I wish my son to be anything other that what he IS? Henry is so very bright and funny and loving. He’s got a dimpled grin  and a twinkle in his eyes that will capture your heart! The kid is SMART! He is his own little dude and he has the potential to take the world by storm, doing whatever it may be that he wants to do! I have no doubts about this. Although there are certain aspects of the autism spectrum that make him the kind of person he is, it by no means defines him! But now it is on his permanent school record. Autism. Will future teachers see beyond that? Or will they just see Henry, the autistic kid? Will they take the time to get to know that Henry is so much more than that? Fear and panic overwhelm me. A long road lay ahead of us. How will we ever be able to make it through?

Then, through my tears, I envision my little dude for all that he is; his quirkiness and intelligence, his quick wit and amazing sense of humor, his vision and skill for building and “inventing” things.  He has an imagination like no other! He will use these strengths. He will be leading the way.  Love and pride and hope chase my anxiety away. Henry may have autism but autism does not have Henry. We will accept this label if it means helping Henry to be the best Henry he can possibly be.

I realize we are starting a new leg of our journey in the autism spectrum. True advocating for Henry must really begin. It is time we start to teach Henry to advocate for himself. He  has a long way to go and a lot to learn. We have a lot of work to do together, Henry and our family. Grant and I need to learn to also be educators for others, the teachers, administrators and even Henry’s peers and their parents. But the best teacher of all will be Henry, himself. He will teach the world that he is so much more than autism, no matter what might be written down on his permanent record.

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