Saturday, December 10, 2011

SNSS takes a Holiday (meanwhile, I'm over at Hopeful Parents)

If you came here for a new Special Needs Sibling Saturdays guest post, I'm sorry to disappoint you.


First off, today is the 10th of the month, so I'm over at HP as usual with my post: Building Community One Tweet at a Time

Over there, I'm talking about...  you guessed it, the wonderful #YouMightBeAnAutismParentIf Twitter conversation that's been going on.

But also?

I am here to announce that the Special Needs Sibling Saturdays series is going to be on hiatus for just a little while, as the holiday season ramps up into gear.

It's going to be getting very busy and I want to spend time with my family. Plus people are going to get swamped and miss their deadlines to get posts to me. I know that - can see it coming - and want to avoid all the stress that entails. So I'm giving it a break for a bit.

Special Needs Sibling Saturdays will be back in early January (probably about the second week) and continue as a weekly series until I make a full year of it - through the month of March, that is. After that I'll re-evaluate to see if there's enough steam left to continue as is.

The series will never go away completely, this is too important a topic to me for that. Also there is much to the hosting that I enjoy, but it is also an (unpaid) weekly obligation that sometimes gets to me, so I'm not going to continue it indefinitely.  At some point it will likely become a biweekly (fortnightly to my Anglo friends) or monthly feature, as seems fitting.

So while it's on break I will be contacting potential and confirmed guests and scheduling out the SNSS posts for the new year. If you think you've got one in you, and I haven't contacted you yet - or if I have made initial contact but haven't followed up (ADD brain strikes again, many apologies) - please let me know! You can leave a comment here, send me a tweet or an email.

Just don't send your note by carrier pigeon or owl (yes, that's a geeky Harry Potter reference), as Cocoa the cat thinks they're delicious.

Also, if you have previously committed to write a SNSS post but have somehow not been able to come through yet (no name calling or finger pointing here, you folks KNOW who you are) this is the perfect time to cough one up and send it to me! All will be forgiven. The hounds will be called off.

(Actually you are already forgiven, because you are a SN parent and how could I *not* understand how life gets, and bloggy obligations are just NOT at the top of the priority list. Believe me, I understand all too well. It's just that this was too good an opportunity to mess with y'all to pass up.)

So, all that said, please go visit me over at Hopeful Parents, today. And if think you might not have seen all of the many wonderful SNSS guest posts that have appeared here for the past 9 months?

Go to the SNSS page now, see what you missed, and catch up on your reading:

Click me to see all the SNSS posts


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Thursday, December 8, 2011

Because


Because he would rather skip than walk down the street... and he's so fast that I have to run to catch up...

Because he gives the best hugs, pulls my cheek down to his lips telling me "Big kiss, big kiss for Mommy" and then plants one on me with a loud smacking sound...

Because every day when I meet his bus, he turns around once we're on the sidewalk to wave and yell "Goodbye, Deba, see you tomorrow!" and his stone-faced bus driver flashes him the brightest smile you've ever seen...

Because he draws people with "all the parts" and his drawings breathe with life:

It took Jake 3 minutes to do this sketch of "Mommy" as he was in a hurry to play
Yes, that's Timmy & his fairies from TV's "Fairly Odd Parents"
This IS our cat's expression when Jake's around: anxious
Jake didn't get to finish the body, but I love Bruce Wayne's face here

I tell you: "If you've seen one kid with autism... you've seen ONE kid with autism."

Look at my Jacob with fresh eyes, anew every day, and every day he will astound you.

As he does me,

as

he

does

me.


I'm linking up to Shell's Pour Your Heart Out & Maxabella's I'm grateful for... because I am so grateful for my wonderful autistic son Jacob.


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Tuesday, December 6, 2011

Crash

Driving in Italy, July 2000
It was our honeymoon. In Italy. (The last time I used my passport, a long time ago.) My husband is a native of New York City, not naturally at home in cars, so I had been doing the driving around Northern Italy: to Lake Como, through Bassano del Grappa and the Valdobbiadene wine region, up to and back from Cortina d’Ampezzo at the edge of the alps.

We were on the last, short leg of the driving part of our trip, about to surrender our rental car to spend our final honeymoon days walking and being ferried about Venice in the vaporetto waterbuses.

My husband had witnessed my driving for a week and declared himself ready to take the wheel, now that we were on the flat lands and relatively wide roads of the southern Veneto.

We were entering a traffic circle, or so my husband thought, and, as we had been specifically admonished at the car rental counter that in Italy traffic in a circle ALWAYS has the right of way over traffic entering, my husband was looking exclusively to the left, at the other traffic in the circle, and ahead to where we would be exiting.

He did not look to the right, no need in a traffic circle. But, ah, we were not in a simple traffic circle, but rather a traffic circle BISECTED by a highway, which, naturally, had the right of way.

So my husband was not looking to the right, did not see the tiny “yield” sign, nor the semi bearing down upon us at full speed from that direction. It missed us. But the small car behind it did not.

It happened just like in the movies, the slowing down of time and our reflexes; the ear-shattering crunch, the bone rattling grind, the grand clashing and crashing of it all. Fortunately for us, the impact point was well behind the front seats we were sitting in, the empty rear of our car sustaining all the damage.

We pulled over, shaken but unharmed. There is a long story here of all that happened next, too long to tell in this flash moment, but I will say this:

Everyone was uniformly kind to us, from the young woman driving the (totaled) car that hit us, to the car’s owner, her boyfriend’s father who stayed with us to help translate to the Carabinieri. Well, It didn’t hurt that I would waggle my finger back and forth between my husband and I and intone the one phrase I knew well in Italian “Luna di Miele”(honeymoon) as the Italians are quite a romantic people.

And also? In Italian, the term for car accident is “incidente d’auto” – “incident” in English, versus our “accident” conveying a vast difference in attitude. Accidents require responsible parties to be determined, blame to be laid, while incidents… just… happen.

In due course, the Carabinieri and tow truck from the rental company arrived. There was much standing around, and then retelling of the “incidente.” By the time we arrived at our hotel in Venice we were bone weary and famished, but happy to be alive.

In a vaporetto in Venice on the last day of our honeymoon, July 2000
Maybe the saddest part for me is that we lost a roll of pictures (yes, children, this was back in the old days of cameras running on film) as I had stashed our most recent shot roll in the glove compartment and forgotten to retrieve it in the aftermath, so a few days of our honeymoon disappeared from the photographic record forever.

A small price to pay for escaping from the crash with life and limb intact, nothing lost but a few hours of our time, our insurance deductible, our dignity, and... the notion of my husband ever driving in Europe again.


This post was inspired by a prompt at Write on Edge. This week's RemembeRED assignment was to write a post inspired by the word "Crash." It was supposed to be a 10 minute flash writing exercise, but I must confess I bent the rules a bit. I have never written any of this story down, and I just really needed to tell more than 10 minutes worth. Sorry.

Please click on the button above, go to the link-up and read the other wonderful posts you'll find there.

Also linking this up to Love Links #34


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Monday, December 5, 2011

Memories Captured and Captioned

Galit, over at These Little Waves is running a linkup in conjunction with Alison at Mama Wants This, called “Memories Captured” and I found out about it when I went to visit my friend Deborah over at MaNNaHaTTaMaMMa. Ain't the internet grand?

So I thought I'd participate with this gem, a blast from the boys' past:

Photo: April 2004, Jacob & Ethan at 20 months. Not talking yet, so below is my interpretation of their expressions in this photo that PERFECTLY captures their personalities for the first two years or so of their lives.

Jacob: "Hey buddy, how-ah-ya? Nice ta meetcha!"
Ethan: "Who, may I ask, are YOU? Why have you presented yourself? And what can you do for me?"

Also? The hand in the photo, holding Jacob's hand at the far left is my mother's. She was very much in their lives when they were little, the kind of Grandma who, in spite of being in her 80s with creaky arthritic knees never hesitated for a moment before getting down on the floor to play with them or going for a walk to the playground, like this day.

I love looking at this photo as a reminder of that more innocent time before we knew about Jacob's autism, when we just thought the boys had speech delays.

In those early years, Jacob actually had the more outgoing personality. He was a giant flirt. Back in the day, we thought his lack of "stranger fear" - which Ethan had in spades - just meant Jake was uber-friendly. Little did we know it meant he wasn't processing that there might be anything to be afraid of, part of his autism constellation.

A short time after this photo, when Ethan had a language explosion and Jake didn't, their personalities switched and Ethan began to reach out much farther into the world than Jacob, who was getting more spacey and "dreamy" (as his rather stupid first speech therapist called him).

Ethan went on to make friends, many friends, while Jacob has really yet to make a one. So it's nice to look back on this time when Jake seemed to be so socially connected. When "connected" meant smiling and laughing and batting his long eyelashes at pretty girls. Because THAT? He is still good at, my beautiful boy.


So, come join in and link up your own photo with Alison or Galit.
 


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Saturday, December 3, 2011

SNSS: Amazing Sister to Grace


My guest today, Frelle of the blog Made More Beautiful is a very, very special person. She has just come through a very hard time, including a separation from her husband and impending divorce.  

But in spite of the difficulties on this path through her life, Frelle is always reaching out to help others. She is a part of many online communities. 

I first "met" Frelle through some lovely supportive comments she left on my posts. I followed her home to her blog and discovered that not only was she a good online friend, she was also a wonderful writer, honest and deep.


Frelle is the mother of four children, the oldest of whom is a daughter with challenges that fall on the autism spectrum. Today she shares the story of the strong relationship between her eldest daughter and her just younger sister, who is like an older sister now.

Read her beautiful words, here:

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Amazing Sister to Grace - by Frelle

My oldest daughter, Grace, is almost 12.  She was diagnosed with Aspergers about 3 years ago. She has three younger, neurotypical siblings.  Two sisters, Lily (9) and Felicity (6), and one brother, Jackson (4). I keep them anonymous on my blog as Oldest Sister, Middle Sister, Smallish Girl, and Little Fella.

The journey toward diagnosing Grace didn't start until she was about 5. I had no idea that Grace wasn't developing typically until Lily came along three years later and had excellent hand eye coordination and motor planning skills that her older sister had a lot of trouble with.

Because of the 3 year age difference, I decided to have Grace evaluated, and she scored a 36 month delay in both gross and fine motor skills, and was diagnosed with Sensory Processing Disorder, Sensory Modulation Dysfunction, Auditory Processing Disorder, and Dyspraxia.

At age 6, she possessed the emotional maturity of a preschooler, and would often get overstimulated in public and have meltdowns.  The laying-in-the-aisle screaming and crying variety. Her siblings never made scenes like she did, and more than once I heard the words "brat" "can't control her child" and "isn't she a little old to be throwing a toddler fit?" By age 8 she had mostly grown out of public meltdowns, but Lily began to be embarrassed at the loud wailing and yelling her sister would do in the car or in front of Lily's friends.

I told Grace about her diagnosis at age 9. She had been having an incredibly rough day, and had been hitting the door in the van and crying and screaming all the way home.  She went to her room to calm down, and when we spoke later, she asked why she was so different from other people. So I told her I thought she inherited her blue eyes from her grandma, her freckles from me, and the way her brain works from her dad. A variation of normal.

Lily is the sibling closest to Grace in age in our family. I told Lily about her sister's diagnosis when she was in second grade.  Grace was still having meltdowns often, but I never sent her to her room to get control of herself.  I knew she needed to be talked through the panic attack/meltdown.  On the other hand, when Lily was being loud and obnoxious and having a tantrum, I would send her to her room and expect her to pull herself together and come out when she could be nice to people.

She thought this was really unfair, and confronted me about it one day after Grace had caused a particularly disastrous meltdown scene during her birthday party. I explained in very general terms that Grace can't talk herself down out of a fit very well, and that she could easily pull her own self together. I explained that Grace's food and clothing and loud noise sensitivities were all tied together, and that her brain thinks a different way than hers and mine do.

Lily passed her sister in emotional maturity last year. I wasn't sure how Grace and Lily's relationship would change when Lily did this. I'm not sure either of them realize it happened, and there's no resentment from either of them toward the other.

Lily continues to relate to the world in a much more mature way than Grace.  She has taken on the role of the oldest probably because she sees that it needs to happen, as well as it just being because of her particular personality.

Lily, at 9, is a very typical tween. She's very into popular music and tv shows, she loves to go shopping and is very into fashion, she enjoys going out for coffee with me, and helps her siblings with shoes, clothes, bathtime, getting snacks or sippy cups, and is attuned to needing to jump in and help when both of my hands are busy or I haven't noticed an issue in another room.

In contrast, Grace has few tween characteristics, preferring to draw, read, play webkinz online or Barbies with her youngest sister, Felicity. Outside the house, Grace behaves much like a typical tween, and does well at blending in with other students.

She is protective of her diagnosis, but when she makes a new friend and learns she can trust them, or that they have a sibling with special needs, especially autism, she confides what makes her unique. She's never had it used against her, and she has a circle of close knit, very protective and mothering friends that she counts on to help keep her centered throughout her day.

She has a difficult time not losing control at home these days, partially due to the necessity to act older than she feels and blend in and deal with sensory issues very quietly all day long, and partially because her father and I have separated and are divorcing.

Felicity and Jackson, Grace's youngest siblings, have never questioned why she acts differently. They have never spoken up accusing her of getting special treatment, or complained very much about how she throws fits more than all of the rest of them combined.

Recently, Grace was being cyberbullied by a girl at her middle school. This girl had started trouble between Grace and her friends in elementary school as well. I overheard Grace telling Lily what was going on and reading her the emails that the bully had sent.

Lily listened patiently, told her she was sorry that the girl had said mean things to her and about her to her friends, and that it wasn't right. She gave her advice on how she would handle the situation. Then she said something I think a lot of older siblings tell younger siblings: "I can pick on you, but NO ONE ELSE can!"

I appreciate that Lily doesn't make fun of Grace in a cruel way or use her diagnosis or hypersensitivity features to put her down. She seems attuned to that without ever having been told to avoid it. Lily also has a general appreciation for those with special needs and invisible disabilities because of the openness in conversation about them in my house.

Grace and Lily have recently started confiding in one another due to the separation and divorce their father and I are going through. I can't tell you how it warms my heart to see them develop a closer emotional bond.

A few years ago I never would have believed they would make good friends, let alone feel any loyalty to one another. Being a special needs sibling can be challenging, but Lily has naturally and without instruction, become a wonderful "big sister" and I'm proud of the young woman she is becoming.

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I love everything about this post. And the supportive relationship between the sisters truly moves me to tears. 

Now that you have read Frelle here, please do follow her home to her blog Made More Beautiful and read her beautiful heartfelt words there, too.

You may want to start here, with this post about a big step Grace took one day, or this one, about Rigid Thinking, Expectations, and Public Meltdowns, or another post about Grace's Meltdowns and Real Life Coping Skills.

Do read this important post, Happy Half Birthday, You Have Aspergers about what it was like to talk to Grace about her diagnosis. 

And if you want to know more about Frelle herself and her difficulties, read this post where she talks about striving to feel like she is enough

Finally, go follow her on Twitter where she tweets as @frelle.

Thank you so much Frelle for sharing your lovely family with us here today.  


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Friday, December 2, 2011

Today I am Just Being Enough

I'm not here, today.

Or rather, I'm here just for a moment, for long enough to tell you to go over there.

Where?

Here:


With a guest post: Letting Myself Think BIG over at the wonderful site Just. Be. Enough. whose tag line is:


And if you're here for the first time, coming to visit from over there...

Welcome! Nice to meet you. Please make yourself at home, poke around, stay awhile.

Don't know where to start? Want a little Squashed Mom road map? Click the links below for a nice assortment of my posts; a Bologna smorgasbord, if you will...

I'm an older mom, with nine year-old twin boys and an 89-year old mother in my care. I recently lost my 92 year old father and 93 year-old mother-in-law. I'm the squashed meat in the middle of the sandwich.

I write about birth and death, about being a mom and being a daughter.

I write about Autism in general, and my autistic son Jacob in particular.

I write about how adding in my and Ethan's ADD makes us a very neurodiverse family.

Sometimes I try to make you laugh.

And sometimes I try to make you cry

Sometimes I tell stories from my childhood, and my family history.

And I once let Ethan take over my blog and tell his own story.

I also write every month for Hopeful Parents.

And sometimes I link up on Mondays with Be. Enough. Me.

Also? Ethan and Jacob do not get along well, so I started a guest post series to talk about sibling relationships in families with special needs kids, called Special Needs Sibling Saturdays.

I hope you like what you've seen, and that you'll come back to visit soon.

Finally, thanks so much to Elena and the gang over at Just. Be. Enough. for inviting me to their place today. It's an honor.


Hope to see you back here tomorrow for Special Needs Sibling Saturdays.


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Thursday, December 1, 2011

Skipping

Hey, it's DECEMBER first today...

NaBloPoMo is over, FINALLY over, and so I don't have to post today! I can skip it, skip a day, yes! Skippity, skip, skip.

Watch me skipping. Nothing up on the old blog today, nope not me.

But wait...

if I hit publish on this...

then I AM posting.

THIS will go up on my blog...

and it's a post...

so I'm not skipping a day.

But I feel like celebrating having made it through the whole month of November, the posting every day whether I "felt it" or not, the discipline of the daily writing.

And while that felt great? It's also a relief that it's over.

And I want to commemorate my accomplishment by skipping a day.

But I also want to TELL you I'm doing it.

And so by telling you that I'm skipping, here on my blog, I'm writing a post... and therefore NOT skipping.

So I'll just not post anything.

But I WANT to tell you that I'm skipping.
 
But if I DO tell you, then I'm not skipping.

AAAAAGH!

My head is going to explode.

Wait, this is sounding familiar... very familiar...


Yes, I believe that's it.

A classic logic paradox.

You're welcome and goodnight.


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