Our journey in the Autism Spectrum

Posts tagged ‘family’

Gone Fishin’

fishing boy

It started with a dollar store fishing pole,  various plastic sea life, and a cheap blow-up wading pool. Although, we probably should have seen this one coming as Henry has always liked string, ribbon, yarn, rope, basically anything that can be whipped around and/or tied onto something and used to drag, pick up, or tie together. You get the idea.

Henry would place things around on the floor and then hold one of his tow trucks up using the string and hook to try to pick them up. When I asked him about it he said, “I’m fishin’.” He began to “fish” more often with just about anything he could get his hands on that he thought he could get to work. Toys were starting to get “broken” with pieces missing. Eventually I would find those pieces tied to yarn or string and being used at “bait” or a “hook”.  Any toy with a magnetic end was even more prized!

Being that BDC and I can be a little slow on the uptake sometimes, it took a bit before we thought of the plastic fishing pole.   It was a hit!  “Duh!”

At one point Henry began asking for an aquarium.  At first I thought how great this was that Henry could identify that perhaps this would be calming for him.  And then I realized…

“Henry, you know that if we get a fish aquarium, you can’t actually ‘fish’ in it.”

“Oh.”

He stopped asking for the aquarium.  The plastic pole and wading pool would have to suffice.

A couple of years ago, one of BDC’s sisters and her husband bought a home on a lovely private lake.  BDC’s family loves to fish and the private dock was perfect for casual fishing.  On one of our rare visits out that way, we introduced Henry and Lucy to reel fishing. (Spelling pun intended. Sorry. Couldn’t help myself).    Given the low threshold for patience, Henry doesn’t always respond well to instruction.  He thinks he knows and he can do it himself.  Then frustration sets in and he relents to some very brief teaching.  Despite having small outbursts regarding bait/flies, casting form, and not catching any fish, Henry seemed to enjoy actual fishing.  (In regard to the reference to “actual fishing”, it should go without saying, “relatively speaking”.)

Back then Henry’s bug issues were not near as bad although the dragon flies and occasional wasp buzzing by was met with an outburst, he was distracted enough to keep at it.   Cast, reel in.  Cast, reel in… did I mention Henry’s impatience and that we were on a small lake?  The bobber scarcely hit the water before he was reeling it back in.

Note to Uncle Kevin and Aunt Lisa:  Your nephew may have potential as a successful trout fisherman if you ever want to take him fly fishing!  Except you’ll have to clear out all of the bugs first.  Good luck with that.

Since the legendary “Cicada Swarm of 2011”, Henry’s fear of bugs has gotten worse every year.  He’s progressed from it being an annoyance to a dislike to an all out panicked phobia.   It’s been a real problem this summer.

This past June, we once again headed out to BDC’s sister’s place.  All Henry and Lucy can talk about is fishing out at Aunt Leslie’s and Uncle Jay’s house!  I was completely prepared for Henry to take one step out the back door, discover a bug, and spend the remainder of our stay inside.  Surprisingly he made it through the yard and down onto the dock with only a few shrieks and episodes of spastic waving of his arms to keep away any bugs; real or perceived.

This time around, both Henry and Lucy were really getting the hang of casting and they were doing a pretty impressive job at it.  Henry even kept fishing after getting a hook caught in his hand!  Luckily for me I was inside at the time and Grant got to deal with that. ~Thanks, babe!  Anyway, Henry got right back in there and kept fishing!  That’s HUGE!  Henry still won’t touch the bait, whether it’s real or artificial and certainly as much as he wants to get close to a caught fish, he can’t get too close.  But I can’t blame him there.  It wasn’t until I was an adult, that I could bait my own hook.  And sometimes I still get a bit squeamish when taking a fish off the hook.  I’m just so proud of Henry that he kept at it even with all the challenges around it that he had to deal with!

I have always enjoyed fishing and I would love for the kids to stay with it.  This could be one of the simple and rare activities that we could all enjoy doing together as a family!  How cool would that be?!?  And it will be interesting to see what Henry does when he actually catches a fish some day!

gone fishin sign

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The Holiday Letter Not Sent

I was undecided about sending out holiday cards at all this year. 2012 has been a particularly difficult year for me personally and the thought of stuffing a hundred or so envelopes with a picture of our smiling faces seemed a bit like a lie. No way was I going to be able to write a cheery holiday letter to go with it. For me, this year has been filled with bouts of depression and anxiety. I’ve been daunted and overwhelmed by the task of parenting our teenager, our son on the spectrum, and our very feisty, strong-willed Kindergartener.

The spring was filled with conflict and teenage rage from Molly. And the difficulty of raising a child on the autism spectrum is a constant source of anxiety and exhaustion. Our days are filled with reminders of how to behave appropriately without outbursts or meltdowns, social stories, and trying to get Henry to try things outside his “Kansas” (his comfort zone). Summertime found me most days in my van running kids from two different summer camps and summer school all the while trying to complete an abundance of work that was coming my way at my at-home medical transcription job. We also learned that we would be losing our beloved respite care provider, Maya, to graduate school in the fall.

My job had many ups and downs this past year as well. There was always a question as to whether I would have a job or not. Would they outsource to a larger company in preparation to transition to electronic medical records or would they decide to keep us on due to the very high volume of work they were bringing in with no plan in place for the EMR transition? This fall the questions were answered when after 6 years with them, they gave notice that my position would be eliminated. Panic about our tight financial situation getting even tighter consumes me.

And then December 14th happened. The Sandy Hook tragedy. On that day too, a dance-friend of Molly’s lost her 2-year battle with cancer. Just 4 days before that amazing, incredible young woman’s 15th birthday. I couldn’t log on to Facebook or even watch the news. It all hit way to close to my heart and I just couldn’t bear it. This past week has found me trying to cope. Trying to process these recent horrific events. And as such events usually do, to re-evaluate our own lives and relationships.

Through it all, Grant, as always, is the rock of the family. The cornerstone of our tribe. “We are OKAY. It will all work out. Look how far we’ve come!”

I want to believe that. I have to believe that. Down deep I know he is right.

This past year has brought amazing growth and maturity for Henry. Meltdowns are few and far between. Outbursts are lessening as well. We have conversations….back and forth…that HE initiates! He volunteers information about his day more often. HE chose to try Boy Scouts this fall and likes to wear his Tiger Cub uniform. He graduated from the additional literacy help he was needing in just a few months and he is up to speed with his mainstream 1st grade class. His unique personality continues to change and emerge and it is breathtaking.

Despite Lucy’s recent testing of the boundaries of Kindergarten, she too is maturing. She’s so very bright. Her exuberance and quick wit take us often by surprise. As the “baby” of our brood she lives up to that third-child stereotype of being the clown, the entertainer, the comedian. May the Higher Powers help us all!

One of the things that has really brought me much joy this year has been watching Molly transition into high school with amazing maturity and ease (relatively speaking, of course). I’ve never seen her so excited about anything as she is about marching band! It brings tears to my eyes just to see  her enthusiasm and natural talent for this! Our high school has an amazing music program and Molly is taking to all of it. It’s brought me such happiness that Molly has accepted my involvement in the parent booster group and I am thrilled that she allows me to share in this amazing experience with her! I feel a connection again to our oldest!

For me personally, I am meeting new people  and establishing new relationships with fun and interesting folks as I continue to pursue  sustainable income. I’m enjoying the holiday retail season more than I thought I would as I’ve taken a seasonal job at a local Barnes & Noble. I’m surrounded by books and people who love books and reading as much as I do!  This past year I’ve met and befriended writers/bloggers and authors that inspire me and encourage me to continue to write. I continue to speak one or two times a month at TouchPoint Autism Services to the new parents going through their ABA parent training program. Grant lends a never-ending supply of support, encouragement and love to our entire family!

Earlier this week I went ahead and stuffed those envelopes with our holiday card. On it is a picture of us taken of us this past summer at TouchPoint night at the Magic House. All five of us. Together. Smiling. The picture is not a lie. We are all healthy and  TOGETHER. And that makes us HAPPY! And THAT is all that matters!

Wishing everyone a groovy Holiday Season and Peace in 2013!

Wishing everyone a groovy Holiday Season and Peace in 2013!

Fewer Words Wednesday: The Dude and His Uncle

This past weekend were able to visit with my brother and sister-in-law and their two kiddos. They had made a last-minute decision to come back to our side of the state for a quick weekend visit with the families. We had such a wonderful time! I was so excited to capture a few special moments Henry had with his uncle Kevin, sharing a book about dinosaurs. The closeness with which Henry obviously felt so comfortable with was a joy to see! We only get to see my brother’s family a handful of times per year so that made this amazing exchange extra special and cool to watch!

I am still so taken back by the closeness and physical contact that Henry is making here! And the direct eye contact! All I can say is…WOW! …just, WOW! Looking at these pictures brings such fullness to my heart and it’s all I can do to keep from tearing up.

 

~Thanks so much, Uncle Kev!  😉 Better get ready as we  prepare to descend upon you all next month!  ❤ K.

Fewer Words Wednesday: Thank You from Team Chameleon

It’s been long overdue! Shamefully overdue! I am just still amazed and overwhelmed by the generosity of friends and family and strangers, too, that contributed our team’s successful walk for Autism Speaks this past October! To those of you who donated funds and/or time, to those that helped sell bracelets and t-shirts, and to all of those buyers out there, to those that walked with us and those of you who were with us in spirit~ We are deeply grateful! Thank you so very much! It was a most beautiful day!

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.

Olivia and Our Family’s Destiny To Weirdness

Earlier today Lucy and I were waiting to pick Henry up from school. We had arrived a bit early so we went inside and sat in a little sitting area at the end of his hallway. She started contorting herself around sideways and had the side of her shirt lifted up. I should know better than to ask…

ME: “What are you doing?”

LUCY: “I’m trying to see it.”

ME: “See what?”

LUCY: “This.” She pointed to her side.

ME: “That freckle?” as I moved in for a closer look.

 LUCY: “Yeah, sometimes I like to name it.”

ME: “You name your freckles?”

LUCY: “Sometimes.”  

ME: “What do you name them?”

LUCY: “Olivia.”

ME: “Olivia. You named your freckle, Olivia.”

LUCY: “Yeah, sometimes I like to talk to them.”

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