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Couldn’t do it without you guys… so come on over and let’s continue the journey. I have so much to tell you. 🙂
Becki
Wow! Some good news during a very traumatic week here at our house (will share that at a later time…)
I’m overwhelmed with support.
Click the link below and find my blog under Babble’s Top 25 Autism Spectrum Blogs. I’m currently #22 (and moving up!) — nominated by an unknown source!
Scroll down and click the ‘like’ button and let’s see if we can get some exposure!
Thanks so much and your support means more to me and my family than you’ll ever know… especially right now…
Becki
(Reposted from May 2010)
I really needed to hear this today. Thought I’d share. It’s a very, very powerful message.
http://www.youtube.com/watch?v=YiofUjp1SAA
Keep building!
Becki
If your child could tell you this, he or she would.
This is for all the angels out there struggling every single day ~
Becki
It’s been a difficult couple of weeks around here. Tony is officially done with high school and we are taking a couple of days to process that. On Monday he starts his “college orientation” (that’s what we’re calling it — because, logically, that’s what his big brother did) for his transitional program which he will be in until he’s 21 yrs old. We are excited, yet anticipating change always makes for a tense environment here. Although he’s ready for a new routine, sadness overwhelms me at times that high school is over for him and it just wasn’t ‘normal’. I realize these are my issues, not his, as we stretch into the new routine, paving our way into the unknown. Who knows where this will take him. And like most high school seniors, his life is still unwritten.
I’m sharing some lyrics to one of my favorite songs from a few years ago. Just heard it on the radio this morning and was just so appropriate. Just another sign that the good Lord is speaking to me, telling me that it’s all going to be ok. The song could be interpreted in many different ways — if you really stop to think about it. Maybe it’s talking about our kids with autism and how they can’t get the words from inside their heads to their lips. They can’t explain what they’re thinking. They can’t ‘put it into words’… “drench yourself in words unspoken”… that’s just how my Tony lives. There’s so many words up in his head and so many conversations going on sometimes… yet he can’t converse. I can’t imagine how frustrating that is. Is he waiting for this to go away and be fixed? or has he already embraced it and is “living his life with arms wide open”?
Maybe it’s talking about us parents — who’s futures are so undefined, unwritten. It’s like the artist is saying: go live your life. Embrace it with arms wide open. It is what it is. It’s just beginning. Go create your story. No one else can do it for you. Release your inhibitions – stop letting other things hold you back. Stop worrying about what everyone else is thinking — just lay it out there and embrace it. This is YOUR gift. Go make it worthy.
And that goes for anything – your job, the business you just started, your kids, your spouse or even your ‘self’ — or your life with autism.
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
I break tradition
Sometimes my tries are outside the lines
We’ve been conditioned
To not make mistakes, but I can’t live that way, no
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
The rest is still unwritten…”
Today on The Talk a fairly new CBS Talk Show, they continue to shine a light on Autism Awareness Month. On the show they focused on some amazing teens who have autism and are role models in their community.
One such teen, Carly Fleischmann, literally took my breath away. A hurried and very deep sob came from no where when I watched her “talk” via computer program about what life was like as a teenager with autism. I read another autism blog recently that talked about parents having PTSD (post traumatic stress disorder) and reliving the reality of this disease day in and day out. I haven’t been able to get that post out of my mind and have shared it with a few friends. I do believe that at moments like these, I relive — or recreate — the sadness and trauma that one faces when given a lifelong diagnosis of autism. And the deep, deep desire to help him reach his potential… whatever that may be.
In her blog Mom-NOS states:
“…The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them. (the moms)
The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?
It was a powerful moment.
I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:
Symptoms of PTSD fall into three main categories:
1. Repeated “reliving” of the event, which disturbs day-to-day activity
2. Avoidance
3. Arousal
You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:
It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).”
———————————–
For you other autism moms reading this blog, I sometimes feel this way too. I do.
What brought me to such deep tears so quickly was the fact that Carly talked so eloquently through a computer. Her thoughts and her comments were so ‘normal’. And that was her point! She said that because she may not look normal on the outside, people are quick to judge that she’s not smart. And because she can’t articulate her thoughts through the spoken language, she is often misjudged.
She is an amazing gal and I’m so intrigued with her story because she CAN communicate and tell the world just what it’s like to be in a body/mind with autism.
What would my Tony be like if he could really communicate? What would he say? What would he tell me? I would walk a thousand miles to be able to just have a conversation with him about what he’s feeling and why he gets so frustrated at times.
Maybe he could answer the one question that’s been burning on my mind since his diagnosis 16 1/2 years ago… why did this happen?
Tony 19 mos
or maybe he’d tell me that the ‘why’ just doesn’t matter…
Becki
I sit in my newly cleaned office, listening to Tony through the ceiling. He’s reciting a movie, word-for-word, and having a ball upstairs. The feelings I have are so extreme. One minute I’m laughing with him, and the next my thoughts are wondering off on how others his age are getting ready for prom, and senior skip day, getting jobs and choosing colleges. It’s bitter-sweet, as I sit here totally entertained by his Hollywood performance.
I ran across something that has really helped me over the years and I thought I’d share it with you all. It’s incredibly insightful and I hope it helps you all understand more about autism.
(Taken from “10 Things Every Child with Autism Wishes You Knew” by Ellen Notbohm)
I am a child with autism. I am not ‘autistic’. My autism is only one aspect of my total character. It does not define me as a person.
My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me.
Please remember to distinguish between won’t (I choose not to) and can’t (I’m not able to). Receptive and expressive languages are both difficult for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call me from across the room, this is what I hear: #$%^&*. Instead, come speak directly to me in plain words. “Please put your book in your desk, Tony. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
I am a concrete thinker. I interpret language literally. Idioms, puns, nuances, double entendres and sarcasm are lost on me.
Be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now, those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.
There is, however a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits. I don’t necessarily understand the context or the terminology I’m using. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn. Visual schedules, day planners, and other visual supports are extremely helpful as I move through my day.
Focus and build on what I can do rather than what I can’t do. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you’ll find them. There’s more than one right way to do most things.
Help me with social interactions. It may look like I don’t want to be social, but I may not know how to start a conversation or enter a situation. If you can encourage other children to invite me to join them I may be delighted to be included.
Try to identify what triggers my meltdowns. This is termed “the antecedent”. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
If you are a family member, please love me unconditionally. Banish thoughts such as “if he would just…” and “why can’t he…?” You didn’t fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.
It all comes down to three words: Patience. Patience. Patience.
Work to view my autism as a different ability, rather than a disability. Look past what you may see as limitations and see the gifts autism has given me.
Words to live by…
Becki
Be sure to go to this website: http://www.lightitupblue.org and watch the slide show for breathtaking pictures of landmarks all over the world that changed their colors to blue for autism awareness. Incredible pictures!
Signs and symptoms of autism:
1. Has difficulty mixing with other children
2. Acts deaf
3. Resists learning
4. Has no fear of real dangers
5. Giggles and laughs inappropriately
6. Is markedly overactive
7. Resists change in routine
8. Indicates needs by gestures
9. Is not cuddly
10. Avoids eye contact
11. Manifests inappropriate attachment to objects
12. Spins objects
13. Plays intently for abnormally long periods
14. Has standoffish manner
**children may have some or all of these symptoms**
Thank you for helping me spread awareness… one reader, one household at a time.
Becki
A “blog hop” is a way for other bloggers to meet up and follow each other. Feel free to check out any of the blogs who comment below also ~
Seriously. My neighborhood is deserted. This is just not right.
So here are my Top 10 Things to do When Everyone Else has Fled the Cold:
10. Get a manicure and pedicure — ask for the tropical package.
9. Catch up on your Facebook creeping. Wear your sunglasses as a disguise.
8. Pick up the dog poo in the yard that has now surfaced from melting snow. Wear shorts and sandals.
7. Deep clean the oven in your bathing suit. Feel the heat.
6. Go to happy hour and order a Sea Breeze or Bahama Mama. Bring your beach hat.
5. Drive with your convertible top down sporting mittens and a parka. Wear sunscreen strictly for the coconut smell.
4. Color your gray roots. Put a little lemon juice on there too, in case a sunbeam comes through the window.
3. Sweep the sand in the garage into a pile, put up lawn chairs, and light your Tiki lights from last summer. Play “Margaritaville” loudly.
2. Take a mental vacation. Watch “Couple’s Retreat”. It takes place in Bora Bora. Sip a fruity cocktail.
AND, THE #1 THING TO DO WHILE EVERYONE ELSE IS ON SPRING BREAK:
1. Research destinations for next year’s spring break trip. Book the sitter.
~ That’s all I’m sayin’. There is simply nothing like beach therapy. I need to go to my happy place.
Becki
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