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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SNSS: They are Both “Special”

Today's guest, Shelley Kramm, is a mover and shaker of the Special Needs Advocate variety. As the Playground Fairy she has been at the forefront of the movement to get inclusive playgrounds built in our communities.

Shelley blogs at I'm Still Standing where she is a font of information, as she writes about wellness and special needs families in general, as well as her own very special family in particular.

And, while Shelley is the mother of older children, she still recalls her daughters' beginnings like it was yesterday.  

Come read her reflections of her girls' rocky beginnings and their supportive special relationship today, here:

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They are Both “Special” -  by Shelley Kramm

I have 2 daughters one who I would say is “special” and the other with “special needs” and depending on the day over the past 19 years I would say they have each switched those words several times…

Pregnancy and I do not agree; why I am not sure, my mother gave birth to 6 children over the course of 8 years. For me, not so much…

My OB-GYN actually called me “the girl with the little black rain cloud” throughout my first pregnancy. I spent the first trimester throwing up so much I lost 15 pounds.

I found out I was RH negative (the only thing in common with my mother) developed pancreatitis and major gallbladder issues, my amniotic fluid level seemed to drop to all time lows, and then my blood pressure started to rise and protein began to appear in my urine and I developed full blown Preeclampsia/Toxemia and was admitted to the hospital 3 and a half months before my baby was due.

So not like my mother!

To make a long story short, it was a traumatic birth, 36 and a half hours after my water broke with Pitocin I had a c-section and my first daughter was born at 32 weeks weighing 4lbs 6ozs with NO cry! NO sound… Nothing…. She was blue… resuscitated… ventilated… must have been due to the magnesium sulfate that was controlling my blood pressure and her “life.”

We named her “Sarah” meaning “Princess”… Little did I know how that special Princess would turn into a Queen. The doctors told us she would be “deaf, blind, retarded (I hate that word) and never live on her own.” However, 24 hours later she was pulled off of these things in the NICU and two and a half weeks later we both went home to begin childhood.

Three and a half years later, I found myself again in the same predicament of a not so great pregnancy with Preeclampsia/Toxemia and again at around 28 weeks was at my OB-GYN with Sarah when my doctor shook his head and informed me that I wasn’t going anywhere… It was time to check myself into the hospital as the Preeclampsia/Toxemia was getting out of control and I had to be monitored.

There I was with my little child laying in my hospital bed wondering about my next. The birth, after a prior failed induction, we knew would be a c-section. So we prepared as the operating room prepared. And on February 6th six weeks before her due date Hadley entered the world with a cry that I will never forget.

She cried!! I can remember that cry as if it were yesterday as I was so thrilled to hear it thinking “thank god” maybe we would be spared the drama of the last birth and first few hours... However, a preemie and a tiny little baby weighing 3lbs 16ozs; she was the size of a football.

Sarah was waiting to see the outcome patiently; did she have a little brother or sister? And as she was whisked away past Sarah to the NICU I think she wondered… “Uh oh, what does this mean?” Sarah had several friends by now who had new brothers and sisters, but none of them couldn’t “see” their little siblings after they were born…

On Hadley’s 6th day of life she suffered a bilateral brain hemorrhage which changed her life and all of ours in one moment’s time. From that point on Hadley’s life became about medications, and doctors, and monitors, which Sarah didn’t understand. What 3 year old could understand this?

When Hadley finally came home from the hospital, a month later, she had monitors attached to her and a nurse who helped with the therapy and medications. Sarah would walk in and out of Hadley’s room to see her, and every time she walked out she would “smell her hands.”

I’m not sure what that was about and as Sarah grew older I asked her about it, and she, as a lot of children do, just didn’t answer. But I feel that perhaps she thought that there was a “smell” that might rub off on her and therefore she could “catch” what Hadley “had.”

I tried to keep our family life as “normal” as possible, and as our children grew I took them to the local park to play. Not such a great idea, and one day I got pissed off and came home and told my husband this had to change, my children could not play together. My special little daughter Sarah wanted to push her sister around and “play” with her, and this was impossible with woodchips and her stroller/wheelchair.

Hadley’s life was complicated enough with daily visits from physical therapists, occupational therapists, speech therapists, cognitive therapists, doctors, and a daily regime of medications which tasted oh so yucky.

Sarah would always defend her little sister’s disability to people who stared at her, children as well as adults. I became the brownie leader for Sarah’s troop and made teaching children about special needs a big part of our weekly lessons as Sarah thought it would help other children learn about special needs children and how they are not so different from themselves. Sarah was always willing to spread the word on how we are all ABLE.

When Sarah was 14 she came to Kenny and me and asked if she could be in a pageant. We had not ever experienced anything like this and wondered where this was coming from, but as we thought about it we realized that Sarah’s whole life she has been either Shelley’s daughter, Kenny’s daughter or Hadley’s sister and she wanted her “thing;” she wanted to show the world she was “special.”

For the remainder of her teen years Sarah competed for numerous titles and was very successful as she showed the world that beauty comes from within and shared her platform of “we are all ABLE.” In 2005 after winning Miss Maryland Teen America she received the title of Miss Continental Teen America and spent the year raising awareness for the disabled.

I thank god everyday for my two daughters and the lessons that they have both taught me on the word “special.”

 Shelley's lovely family

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Shelley, I find it so inspiring that your older daughter is such a leader in fostering understanding of people with special needs. Wow, you must be so proud.

And now that you have read Shelley here you're going to want to follow her home to her blog, I'm Still Standing and read her there. 

Try starting with this post about How she went from designer to special needs advocate. Or this moving one about what it was like when her daughter got her first wheelchair.

Also read about her work as a Playground Fairy, how she got one of the first inclusive playgrounds in the country designed and built in Maryland.

And, since Shelley has already gone where many of us are about to tread (with great trepidation), you might want to check out her views on raising teens today.

Also? Follow her on Twitter where she tweets as @shelleyellen and go to her Facebook Fan Page for daily inspiration on your life with challenges, and let her know you like her, you really like her.

Shelley, thank you again for sharing your beautiful girls with us here today.


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SNSS: Sunshine

I found today's SNSS guest, Jim W, when he was guesting over at another blog, Yeah. Good Times. by Jillsmo who herself was an early SNSS contributor with a lovely post about her sons. 

I liked his voice. I wondered, "More kids? SNSS potential?" and followed him home to his blog, Just a Lil' Blog where I found out that, yes, Lily has an older sister. Yay!

In fact, the blog's tag line? Explains it all: "The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her."

Jim is smart and funny and wonderful to read. I am so glad he is now on my radar.

And now? This beautiful tale of sisterly love -- and be sure to watch the short video at the end!

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Sunshine - by Jim W

“What do you miss most about your sister, Emma?” I asked her while we drove to Wisconsin.

“Making her laugh, and when she smiles,” she replied sadly.

“What do you miss least?” I wasn’t sure I wanted to ask that question, it felt like a weird sort of betrayal, but I wondered what she’d say and she didn’t miss a beat.

“Getting spit on.”

When Lily was born, in a concerted effort to short-circuit any perceived monopoly on attention that she might be hijacking from her hitherto only-child sister, we bought a fluffy white teddy bear and gave it to Emma from Lily.

We said, “This is from Lily” and we read the card aloud, “Thanks for being a great big sister to me, Love Lily.”  Emma at three didn’t question Lily’s precognition of her future bigsistermanship. 

We’re blessed in many ways with the kids’ relationship. Lily, though not particularly affectionate in general, genuinely cares for and about her big sister, asking for her when she’s not around and hovering over her clumsily, touching her face or asking for “skishes” - what Lily calls it when Emma lays down on top of her and says “I’m going to squish you!” and Lily giggles and says “I want more skish!"  And Emma has been the best big sister we could possibly have hoped for; patient, understanding, loving, and playful.

We had decided to attend the wedding of my wife’s sister in Wisconsin without Lily.  Our reasons, filtered through guilty consciences ring hollowly even now in hindsight, but they were valid then, and the details that unfolded over the course of the trip only served to confirm them:  Long trip confined to the car, cold weather in an unheated church, loud music and crowded dance floor at the reception, upstairs bedroom, gas fireplace, then a long drive home. Throughout the event we had several “ah hah!” moments where we looked at each other and communed wordless agreement, “she could not have handled this.”

It was the first time we’d really separated the two kids for any significant length of time.  There’s always the tool of divide-and-conquer that married parents of two busy kids are forced to utilize at some point, so my autistic five year old daughter, Lily, and her neurotypical nine year old big sister, Emma, are away from each other often, but in the same ways that any siblings born three years apart are; for brief stretches of therapy, or dance practice, or softball games, always back together again just in time for bed.

My parents took care of Lily while we were away.  She loves them and always has fun playing with them, and that was our primary argument to Emma whenever she would get sad about the upcoming separation, “But you know Lily is going to have so much fun with Gramma and Papa!”

“Yeah, I know.  I just don’t want to be away from Lily.”

In the days before we left I had tried to record a video of Lily saying “I love you, Emma!”  I figured if it was happy enough, it’d bring a little joy to a big sister who I knew was going to miss her little sister.  I pushed “record” and asked Lily to repeat the phrase.  Sometimes that goes like this:

“Say, ‘I love you, Emma!’” I’d say.

“Say I wuv you Emma”, she’d reply, echoing the request.

As I pressed “record” this time and asked her to tell her sister she loved her, she just kept repeating, “Where is Emma?  I want Emma.” And no amount of prompting could convince her to go “off message.” 

I imagined myself playing this video for Emma while we were on vacation, with Emma asking for her sister, and me trying to reassure her that Lily was fine using a video of Lily repeating over and over “Where are you Emma??  I want Emma!”  It didn’t seem like a great idea.  I scrapped that project and instead tried to get her to sing “You Are My Sunshine” with what I hoped would be a “congratulations” to the happy couple as the grand finale with mixed success.

As we dropped Lily off for school the day of our departure none of us handled it well, but Emma had the hardest time.  Occasionally over the course of the days leading up to our trip there had been tears, and this day was no exception.  We walked away from the school, leaving Lily crying with her school aide, and I picked Emma up, hugged her tightly as she sobbed softly against me, and tried to stay composed.

“I miss Lily,” she said, her words muffled by my shoulder, and we hadn’t yet even gotten in the car to drive away from the school.

“I miss her too, baby.”

Let me return to the subject of Sibling Saturday with a rewrite of the trite but true, “If you’ve met one child with autism, you’ve met one child with autism:  “If you’ve met one set of siblings affected by autism, you’ve met one set of siblings affected by autism”.  Not as catchy, to be sure, but just as true.

My daughters love each other and are good with each other in ways both unique to Lily’s autism, but also the same as any other loving neurotypical sisterhood.  They irritate each other and get in each other’s way, they fight for TV time, but at the end of the day they miss each other and want each other around all the time.

I know from reading other accounts of siblings’ relationships with each other that I can’t extrapolate any generalized wisdom regarding typical sisters and their autistic siblings, anymore than typical siblings relationships can be generalized to rules of thumb for other typical siblings.

Five years later the teddy bear that Lily gave Emma on the day she was born was with her throughout our wedding trip.  She left it briefly in her grandparents’ room one evening, and cried when she couldn’t get it back, saying, “It’s the only thing I have from Lily!” until we called and left messages for her grandparents pleading with them to call us and we’d pick up the bear.

They did, and we did, mollifying Emma.  She had a favor from Lily, almost like the knights of old, carrying something to remember her loved one by, tilting not against her fellow knights, but her own loneliness. 

And that made her the smart one.  I could have used a favor too.

In a way I found I had one. We all did. The resultant video of Lily singing “You Are My Sunshine” was something my daughter (and my wife and I) watched over and over and over during the trip as the bustle of the pre/post wedding details would lapse into brief leisure and our brains and hearts returned again to the missing member of our family.

Lily was asleep when we finally arrived home at the end of the trip.  My parents put her to bed at our house that night and waited for us. After they left, we all went upstairs to Lily’s room, creeping into it and standing over her happily.

Emma kissed her finger tips and intoned “I love you Lily” quietly over them, like an incantation, smoothing her fingers through Lily’s hair as she slept undisturbed.

It’s good to be together again.

 

"You Are My Sunshine"

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I really don't know what I can possibly say to cap this beautiful, beautiful post about a pair of loving sisters, about this lovely loving family.  Anyone who knows the contentious nature of my sons' relationship will know how moved by and deeply envious I am of the depth of these sisters love and care for each other. 

This line really kills me: "I just don’t want to be away from Lily." because Ethan begs daily to have Jacob sent away. Sigh. 

And now that you've gotten to know these girls a little bit here, please follow Jim back home to Just a Lil' Blog to read more. Even though Jim's only been blogging for a short while, there are many gems there.

Try starting here, with this post about the girls' relationship, or this one, about appreciating the small moments.  Try this one: Wedding Trip Decisions going into more detail about the thought process behind this trip.

Finally, do not miss this thoughtful post about things that have inspired Jim to become a more involved parent and to write about parenting autism.

You're also going to want to follow Jim on Twitter, where he is known as @blogginglily and where his current avatar is the wonderfully vikinged up:

I'm sure he's going to change this soon, and thought you should see it!

Thank you so much Jim for sharing your beautiful family with us here today.


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SNSS: The Bucket and the Mandrake

Today, SNSS is going hyper-local. My guest today, Michaela Searfoorce, is someone I actually met first in real life and not the bloggosphere. (What? It happens!) She lives in my neighborhood and our sons were in the same special needs "challenger division" basketball league. 

Furthermore Michaela is a major force in the New York City Upper West Side Special Needs Parenting community. I had found out about the basketball league at one of the regular monthly informational meetings that Michaela organizes.

Her blog The Foorce (a fun play on her name) is mostly focused on providing support and resources for our local New York City special needs community, but is also a place where Michaela shares some of her personal story from time to time.

She is the mother of three children: 11 year-old James and his two young sisters. James has a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction and ADD.

Chances are, if you have a special needs child(ren), they have at least something in common with James. I can tell you firsthand he is a delightful boy with a huge heart and I was always happy when he and Jake were paired up together in basketball practice.

Read on, now, for a glimpse into Michaela's wonderful family, a pair of life-slices that add up to a beautiful thought:

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The Bucket and the Mandrake: Two Small Stories, One Big Lesson - by Michaela Searfoorce

"Mom, help!"

James looked tearfully after the preschooler who was sauntering away with his bucket. Though he is 11 years old now, James is unable to stick up for himself in many circumstances, even with children half his size and age.

After asking politely (meekly, in my opinion) for his bucket back, the boy who grabbed it said "no" and walked over to the other sand area, leaving James to dig around pathetically in the sand with his shovel. I could tell he was upset, both frustrated and embarrassed by his fear of confronting the other child.

"Give James his bucket back right now!"

No, that wasn't me. It was my 2 yr old daughter, jumping down from a nearby jungle gym and charging after the offender. She reached him and ripped the bucket from his hand, yelling "Leave my brother alone. That's his bucket!"

The boy stood there, mouth hanging open. So did I. My daughter marched the bucket back to James and proudly announced, "Here James. Here is your bucket! It's okay!" James wiped his eyes and said gratefully, "Thanks, Margaret."

~~~

"Mom, help! No - don't do it!"

Flash forward to the Harry Potter exhibit in Times Square. I had decided to brave the trip alone while Ryan was at work, and as a consequence was having trouble keeping as close an eye on both James and my 2 year old as I would've liked.

The exhibit was a cool collection of trinkets, costumes and props from the Harry Potter series. James has read all of the books, seen all of the movies, and was even Harry Potter for Halloween last year - I fully expected him to be in love with the place. And he was, aside from some initial anxiety when the sorting hat was placed on peoples heads and loudly started sorting them into Hogwarts houses.

About halfway through the exhibit, Margaret and I were standing by the mandrakes while she eagerly pulled each model plant out of the soil to hear it screech.

For those of you who are not Potter fan(atic)s, mandrakes are small, ugly potted creatures that live in the soil - when you pull them out they emit a cry that renders a person immobilized. Full grown mandrake cries will kill you (don't worry, I'm not ruining a big part of any book!), and in the books students would wear special head gear in order to protect themselves.

So when James saw Margaret across the room, gleefully pulling mandrakes from the soil to listen to their cries, he flew into a total panic. He ran to the far side of the exhibit (self preservation) while screaming, "No! No Margaret! Stop touching them! Mom! Help Margaret! Don't do it, Margaret!"

Everyone froze at the sound of the screams. Tourists young and old looked around the room for "Mom," probably wondering whether this was part of the show or if this large pre-teen was actually terrified of a fake potted plant.

I rushed over and explained to James that they weren't real and that it was okay to pull the mandrakes out, but he wouldn't hear of it. He remained hysterical until we moved Margaret out of danger.

Five minutes later they were both throwing quaffles at quidditch posts. (I don't have time to explain everything about Harry Potter here!)

~~~

I know that some day Margaret will bear the brunt of the "hero responsibility." At 2 years old she already looks out for James in a way that makes me proud.

But, it is my most sincere hope that when she's older she will still be able to remember these times when James bravely tried to come to her rescue as well.

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Reading this lovely post, I found myself once again wishing I had somehow been magically able to provide Jake with a little sister to look up to and after him.
 
And then I read some of Michaela's "Patience and Foortitude" posts on her blog about the challenges of life with a big special needs kid, a toddler and a baby... and I rethought that one.

Having had a little glimpse into Michaela's family here, you should definitely follow her home to her blog, The Foorce, to read more. If you are New York City local, read it all, there's some great resources there. If you're from elsewhere and want to skip the local stuff,, the posts in the "General" category are where you'll find the personal, family ones. 

Start here with this one, about a particularly exhausting evening: Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex  (and yes, I've finally found someone who makes my often long post titles seem pithy).

Also, try this post about a milestone - riding a Ferris Wheel - that may seem small to some, but we special needs parents know better.  Or this one, a letter of appreciation on James's 11th birthday. 

Finally, if you want further proof of what a supermom Michaela is, read this pair of posts about James's heartbreaking massive "poop incident" at his school (due to his medical issues) and how his mom talked to his inclusion class about it (and answered other questions about James' differences) so that he would be safe retuning to the school, afterward.

Thank you so much, Michaela, for sharing your wonderful son James, and the rest of your lovely, special family with us today.


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SNSS: A Tale of Two Brothers

Today's SNSS guest, Laura Shumaker is the mother of three sons, one of whom, Matthew, is on the autism spectrum. While she is more of a veteran, no longer quite in the trenches with us, as her sons are older, she does remember it all, quite clearly.  

If her name sounds familiar, it is because you may have read her wonderful memoir: "A Regular Guy: Growing Up With Autism" about life with her son, Matthew. The book's sub-title, "A family's story of love and acceptance" lets you know exactly where she is coming from. A beautiful place. 

Besides this book, Laura writes an autism blog for The San Fransisco Chronicle's online site SFGate, at her own eponymous site, Laura Shumaker, as well as for a number of other venues, including CNN.com, NPR Perspectives, and 5 Minutes for Special Needs. 

Her work is inspirational, the mission statement on her blog: "launching teens and young adults with autism." And this is exactly what I need to hear: tales of launching, of success.

While her sons have, by now, grown into young men, the story Laura chooses to share with us here comes from a few years ago, when her son Matthew and his NT brother Andy were both (yes, BOTH) in college. So come, now, read, and be inspired:

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A Tale of Two Brothers - by Laura Shumaker

It was an icy cold morning our Northern California town. I tapped lightly on my son, Andy's, door to wake him for an early morning flight back to the east coast, where was freshman in college. During his three week winter break, my husband and I were struck by how little time he needed to spend with us.

Though he was perfectly pleasant, he was always in a hurry to be anywhere but home.

"Have you had a meaningful conversation with him?" I asked my husband after a week and a half, "I sure haven't." "No," he sighed, "but he's thrown me a few lines." Paranoid that we had gone wrong somewhere along the way, we polled our friends in similar circumstances, and they assured us that his behavior was normal.

"Join the club," they laughed, so we relaxed and made ourselves available for conversation and meals, and were grateful for the scraps that came our way.

It was clear, however, that Andy couldn't wait to get back to school, so much so that I was ready for him to leave.

Just as I took a quick swig of coffee before our trip to the airport Andy stepped out fully dressed, packed and ready to go. The night before, he had printed out his boarding pass and arranged for a ride from JFK to his school in Connecticut.

Amazing.

It was quite a different scene one week earlier, when Andy's 20-year-old brother Matthew, who has autism, prepared for his trip back to Pennsylvania, where he attends a special school.

"Mom," he had said the night before his trip, "I need to make pancakes in the morning."

His flight was at 7:10.

"Of course," I said. It was an outrageous request, but one I'd anticipated. Travel days were hard for Matthew, and sticking to his routine would increase the odds of the day being a successful one. So we were up at 4:15, setting his place at the table and warming the griddle.

After breakfast, he counted the money that he had earned during the break doing garden work, and left it piled neatly in the drawer next to his bed. It was no use telling him to put it in a wallet or the bank.

"I like the dollars stacked," he said, "and we're not going to talk about it anymore."

I looked to see if he had cut his bangs the night before, another one of his pre-travel rituals.

Oh, man, he sure did.

Matthew is high functioning but socially inept, and it's necessary for him to fly with a helper. Today, he would be flying back to school with a young woman who worked at his school. She had flown Matthew home and had been touring California during his stay.

During visits home, Matthew, a self-proclaimed landscape specialist, is obsessed with garden work--mowing, blowing and edging with precision.

When he is not doing it himself, he studies other garden crews in our neighborhood and around town. They all know him and are kind to him, as are the neighbors for whom they work.

This year, after three or four days, he grew tired of gardening and announced that he was ready to hang out with his friends. The only problem is he has no friends.

"You can go to the movies with me and my friends," Andy offered as he always does, but Matthew refused.

"I have my own friends," he said proudly, and proceeded to call people who had been kind to him five years ago during his first and only year in public high school.

He called them over and over and over. Their mothers took most of the calls, and I'm sure they wondered why I didn't put a stop to his obsessive behavior.

"Matthew," I said, "calling once or twice is fine, but if you keep calling, that's bothering, and you'll make people angry." I told him that when I was his age, a guy I liked called me too much and it drove me away.

"But did you still think he was nice?" Matthew asked, his lip quivering.

Before I could answer, the sound of a lawnmower around the corner distracted him, and with the promise of a friendly garden crew he was off with a grin. I could exhale for the moment, but I remained constantly on edge until delivering him into the hands of his travel companion for his flight back to school.

"Having a brother like Matthew will make Andy a better person," said well-meaning friends when Matthew was first diagnosed with autism at age three. While their words were meant to comfort and encourage me, they implied that tough times were ahead for baby Andy, which strengthened my resolve to protect him.

Andy was five when I first noticed playmates in the park teasing him about his brother's hand flapping, and I flew to his side, ready to take on the little jerks.

"He has a brain problem," Andy was explaining to them cheerfully, "He can't help it."

The boys nodded anxiously and backed away.

"Andy," I said with a lump in my throat, "I'm so proud of you. That was very loyal." "Thank you," he said, "I'm proud of you, too."

It wasn't long, though, until the novelty of educating his peers wore off, and by the time he was seven, I watched Andy's exuberant explanations turn defensive, and I swooped in with suggestions of snappy comeback lines for him to use in a pinch.

Takes one to know one

WHATever

Get a life!

But by the time he was twelve and entering his middle school years, Andy got tired of using all of the clever lines as Matthew's impulsive behavior and public meltdowns increased.

"Andy needs a break," I told my husband. "Why don't you go to his game today, and I'll stay home with Matthew." Andy seemed pleased with this arrangement, but when he came home, he looked strangely sad for a boy who had scored three goals.

"I had such a great game," he said. "I wish you could have been there."

Soon after, Andy stopped having friends over and started refusing invitations.

"The last time I went to a friend's house," he said, "they asked me why we never hang out at my house. I don't want to say 'because I'm tired of apologizing for my brother.'"

"Would you like to talk to someone?" I asked, "or maybe join some kind of a sibling support group?"

"Or could I just talk to you sometimes?" he replied quietly, "and sometimes can we do stuff-just you and me-without Matthew?"

"Oh, of course!" I said, choking up. And, wouldn't you know it, the next day Andy had a slight fever, but we decided he was well enough to go to Pier 39 with me for the day.

The next few years with Matthew were especially hard, and Andy prided himself on being one of the few people in the world who could calm Matthew down when he was upset, and on being the one who could make Matthew laugh the hardest.
 
"I've got him," he would say when Matthew climbed off the yellow school bus in tears. The two would go out to the mulberry tree in the back and sit on opposite branches until Andy got Matthew to smile. When they walked back in the house, Andy flashed me a secret victorious smile, and I put my hand over my heart in reply.

When I was having doubts about whether or not to send Matthew to a residential school, it was an innocent comment from Andy that helped me make my decision.

"If he goes, maybe both you and Dad can go to my games."

A month to the day that Matthew left for his school in Pennsylvania, Andy, who was now in ninth grade, burst into the house after school looking nervous but exhilarated. He asked if I could help him clean up the house-now.

"Luke and Greg are on their way over!"

I couldn't even remember the last time he'd had friends over.

Within minutes, the clutter of the house was stacked on my bed, the house was vacuumed and the toilets cleaned. I was shoving the mop back in the closet when the doorbell rang.

"Hi, guys," I said, grinning like a modern June Cleaver. "He's back in his room."

Before I could bake the cookies that I had thrown together in my manic state, the boys rushed out laughing and announced they were walking downtown. They flew out the front door, and I burst into tears.

The morning Andy was born, I still thought Matthew was just a regular two-year-old, and I worried whether I could ever love this second baby as much as I did the first. The feeling evaporated the moment I was alone with Andy for the first time in my hospital room, kissing his fuzzy baby head and studying his chubby hands.

Now I had not just Matthew, but brothers, and I imagined the two growing up together. Andy would look up to Matthew, and learn from him. When they were in school, the teachers would say, "Oh, you're Matthew Shumaker's brother!" and Andy would beam.

They would drive around together as teenagers, have the same friends, and I would raise them to be loyal to one another. They might go to different colleges; that would be healthy. But wouldn't it be great if they lived near each other as men and if their wives were friends?

I could never have known that Andy and Matthew would blossom at about the same time-3000 miles apart. I couldn't have imagined that Matthew would be an autistic young man, and that I'd be grateful that he was living and learning with teachers who understood him and valued him.

And I could never have guessed that Andy, after suffering through his reclusive period, would experience a joyous rebirth as he entered high school and that he would reclaim the class clown status that had eroded since grammar school.

He would enjoy sports, friends and classes. By senior year, his homebody stage would be a distant memory as he made plans to go to college at Yale.

When I drove Andy to the airport after winter break, he asked me if I had heard Matthew speak Spanish.

"No. He speaks Spanish?"

"He pretends to speak Spanish," Andy said with a smile, "when he hangs out with some of the garden crews."

"Oh, no, that's terrible!" I said, "They must think he's racist or something!"

"Come on, Mom," he laughed, "They think it's hilarious. They can tell he's...you know."

Andy jumped out of the car, dragging his huge duffel bag behind him.

"I love you, Mom. Thanks for everything. And don't worry so much about Matthew. He'll find his way. And you know I'll always look out for him."

He walked into the airport, and I drove away, conscious that my 18-year-old son had just thrown me a line. But he meant it.

And I grabbed it gratefully.

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Reading this post,
 my heart aches, nearly breaks open with the hope that some day Ethan will come into an easier relationship with his brother the way her Andy has.

I also had the pleasure of meeting Laura in person at the Special Needs Parent Bloggers mini-con that took place within BlogHer11 this summer. And I can state unequivocally that she is as lovely and encouraging in person as she is in print.

So having read this here, you are certainly going to want to read more words of wisdom from Laura. You'll find her on her website, Laura Shumaker, and herSan Fransisco Chronicleblog.

First, you simply MUST read this incredibly touching post written by her NT son Andy about his brother.  Then, if you haven't yet, you will want to read her whole book, a taste of which is here on her site.

Also you will want to read her San Fransisco Chronicle blog for the community information as well as personal stories, especially this VERY important post about how to deal with the POLICE. This information is vital, potentially LIFE SAVING when you have a large son like I do.

Finally, you should also go "like" Laura on her book's Facebook Fan Page. and by all means follow her on Twitter, too!  

Thank you, Laura for sharing your wonderful family with us here today.


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SNSS: Noah, my Brother

Today's SNSS guest poster is a mom and she's a blogger, but she's not a special needs mom blogger. What Lyz Lenz is, instead, is a SISTER of a very special brother. 

Lyz blogs, fittingly, at LyzLenz.com where her tag line reads: "Eschewing pants, eating McNuggets and getting knocked up." She is a wonderful writer: smart, insightful and very, very funny.  

Calling herself a "Social Media Ninja" she also manages social media and writes for a number of other sites as well, including YourTango where she is a community manager (busy woman).

Motherhood is a recent development for her (her baby girl is not yet even one) but as an older sister she has been taking care of people in her family for a long, long time. Especially her youngest brother, who has Downs Syndrome as well as further complicating issues. 

Come read her here, as she writes movingly about her brother Noah, and his special place in her family:

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Noah, my Brother - by Lyz Lenz

I have seven siblings. One is perky with curly hair. One is hilarious and likes to play with legos. Two are good at art. One dedicates her life to serving others. Another dedicates her life to giving people great hairstyles. I have a brother who is in the Army and can run a mile in six minutes. I have a sister who is the best message therapist I’ve ever met. She’s also the most sarcastic person I know. And then there is my youngest brother, Noah.

Noah loves to snuggle. He loves to watch Toy Story and collect army men. He once got kicked out of school for dancing on a table. He also got kicked out of school for yelling at a teacher. Noah is sweet and a little spicy. And among the many things that he is, Noah is also Downs Syndrome.

But it’s a little more complicated than that. Noah also has other disabilities. He is 15 and he can’t talk and just learned how to go to the bathroom by himself. And as much as I hate it, those are the things that define him to most people.

To most people, Noah is not my brother who got kicked out of school. He’s not my brother who carries around a Sheriff Woody doll. Or the brother who gives the best hugs. To everyone I meet he is Noah my disabled brother.

But to me and my siblings he is so much more.

My brother Noah was born on June 12, 1997. He was three months early and was so small my dad could hold him in the palm of his hand. But my dad didn’t do that. He carried him with both hands, cradled against his chest, while all seven of us siblings circled around so happy that Noah was part of the family.

Two weeks after he was born were told he had Downs Syndrome and six years later, we would find out that he also suffered from additional complications that meant he’d never be able to hold down a job or live on his own.

I was thirteen when Noah was allowed to come home from the hospital and I would often sit by his crib, watching him breathe. Making sure he was okay. When he woke up, his blue eyes would watch the ceiling fan circle round-and-round his head.

Maybe he will make fans one day, I thought before remembering that the doctor had said he may never have a career. I ran downstairs and crawled into an old sleeping bag, hiding my tears and my horrible thoughts. It doesn’t matter how good he is, no one will give him the chance.

Before Noah was born, I had known a girl with Downs, her name was Janna, and every time I saw her she would tell me about her boyfriends. “I kissed them!” she would yell and I would sneak away. “Go play with Janna,” mom insisted. But I hated every minute of it.

I hated the way she smelled of mothballs and body odor. I hated the way she laughed at everything and hugged me. I hated that she was twenty and could barely read. Most of all I hated the way people looked at her as she loped along, oblivious to their scornful stares.

I didn’t want Noah to be like that, but most of all I didn’t want to think of him like that. I fell asleep in the sleeping bag and woke up to my mom kissing my forehead. “It’s okay to be mad,” she said. “I know you love him.”

And that’s what it is to be a sibling of someone with special needs—you exist simultaneously in a place of love and acceptance and frustration and guilt. But I wouldn’t ever choose anything different.

I’m older now and so is Noah. But I still get angry. I get angry when I don’t know how to talk to him, when I have a hard time understanding what he wants. I get angry when he comes for a visit and then leaves and I feel like I didn’t get a chance to tell him that I love him and what he means to me. And I know he gets frustrated too.

One by one, his brothers and sisters are leaving home and leaving him. He uses sign language to tell my mom to call us. And when he sees us, he just wants to sit and hug. And I do sit and hug him, but it’s never long enough and that makes me mad too.

Noah is so many other things. He’s the kid who tried to flush the dog down the toilet. He’s the kid who can eat his weight in Cheetos. He’s the brother who influenced one of my sisters to become a teacher and another to become a social worker. He’s the brother that taught me patience.

He’s also just Noah, my brother.

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Reading this post, I was so moved by the loving relationship between the siblings. Noah is lucky to have so many caring brothers and sisters, and I am touched by how lucky THEY feel to have him in their lives, too.

Also this sentence: "And that’s what it is to be a sibling of someone with special needs—you exist simultaneously in a place of love and acceptance and frustration and guilt." just gripped my heart. Ethan is not so much in that place of love and acceptance yet, but I sincerely hope he will be some day.

Having read these beautiful words here, you're going to want to follow Lyz back home to her blog, LyzLenz.com. But I gotta warn you, as poignant as Lyz is here? She is mostly side-splittingly funny and sardonic there.

If you want to start with one of her more serious posts, go to this lovely one about another brother (which includes some beautiful moments in his relationship with Noah, too). And read this beautiful post about what coming up out of that all-encompassing first month of mothering feels like.

And for the funny? Where do I start... try this hysterical letter to future babysitters of her daughter, or this post about her obsession with all things related to crime and criminology.

Besides keeping her own blog, Lyz is also a Community Manager at YourTango where she writes about all aspects of love and relationships.

Finally, you can find and follow Lyz on Twitter as @lyzl, where she is as fun and funny as you would imagine.

Thank you so much, Lyz, for this beautiful post. You are a brave and honest writer and I am honored to have you here.


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Hopeful about my fledgling

I know it's Saturday, but there is no Special Needs Sibling Saturdays today. That's because it's the 10th of the month, so I'm over at

today, talking about my autistic son Jacob's experience at sleep-away camp. Actually, since he really hasn't told me anything about it, I'm talking more about MY process and experience in sending him there.

So come read me over at Hopeful Parents today as I contemplate my little Fledgling.

And if you're disappointed about not finding

today, maybe you missed some of the last few posts that came out in late summer when everyone was distracted, immersed in end of vacation and back to school madness.

Did you read all of these?:

When a Brother's Love Hurts

 by Gina of Special Happens

It’s Just Not Fair

 by Shell of Things I Can't Say

How Will They Know?

 by Caryn Haluska of Living with Logan

They are wonderful and should have more eyeballs. And you'll find SNSS back here again next Saturday with fresh tales of special needs siblings.

SNSS: Unusual is not the word!

Today I have another Irish Mum here as my SNSS guest: Blue Sky of  Looking for Blue Sky. She has a complicated family with three children and an ex-husband.

Of her three children, the eldest daughter, Angel, is a lovely typical teenage girl; her younger sister, Smiley, has cerebral palsy and is non-verbal; and the youngest, Aspie Boy is, obviously, on the autism spectrum. Like I said. Complicated. 

Some days the intersection of one child's physical needs and another's emotional needs (or meltdowns) make life nearly untenable. But somehow Blue Sky finds a way through. Because, well, this is her family. 

She is a wonderful, gifted writer, and I have been reading her regularly since nearly the beginning of my sojourn through the SN blogging world. Furthermore, she helps out with the social media side of Irish Autism Action, aiding Jen, who was my other Irish guest from a few weeks past.

So come now, sit with me and listen to Blue Sky weave the tale of her family so beautifully, here:

Unusual is not the word! - by Blue Sky

It all began with a little girl called Angel. Adored by her Mum and Dad, she happily stayed with her childminder during the working day and then played out with her friends on the long summer evenings and stayed in playing board games in front of the fire when the nights closed in. She came everywhere with us and just seemed to enjoy our company.

It was an idyllic start to her childhood and almost everything I could have wished for.  But I wanted her to have brothers and sisters, and so I had two more children at four year intervals. And that's where life got in the way of my plans.

Into Angel's happy shiny world were thrown not one but two children with special needs. Smiley came first, and she was born at 27 weeks. She has cerebral palsy and some other undiagnosed disorder. My handsome boy had a perfect start in life but was diagnosed with aspergers at age 8, soon after my marriage broke down.

As Angel says, she can stop a conversation about families stone dead when she explains about hers! So how to describe the unusual dynamics between the siblings in this family? Well I'm going to be very logical and explain them one at a time...

Angel and Smiley
It was a huge shock to our little family when my waters went at 24 weeks on my second pregnancy. Smiley was born two weeks later and our lives changed completely. It soon became clear that this little girl was heading for a bumpy ride in life. She was in and out of various hospitals for her first two years, but Angel never complained.

Right from the start she took a huge interest in her very little sister and was a regular visitor to NICU. She talked to her, sang to her and even waved her magic wand over the incubator to make her better. If she was disappointed in having a baby sister who could not crawl or sit or toddle or talk, she never said, nor has she ever given up hope that Smiley will achieve some of those milestones one day.

As soon as she learned to smile my special little girl realised that this was her trump card. With her infectious giggle and innocent wide-eyed smile she makes everyone love her: and the more attention you give her, the more love she gives back.

Angel chats to her and plays with her every day, and Smiley's face lights up as soon as she sees her enter the room. But it can't be always easy. I know that Angel worries about her sister's future and who will take of her when I am no longer able. And I'm sure she gets frustrated with the amount of time it takes to do anything or go anywhere, but she never blames her sister.

Smiley doesn't complain without good reason, she loves attention but will only demand it when she needs something - like a drink, a trip to the toilet or a change of DVD. Despite all its limitations Smiley is so happy with her life and that inspires almost everyone who knows her, including her sister.

And yet. Angel wanted a sibling that she could do all the normal stuff with, so when I asked her if she would like another little brother or sister even if it meant she had to give me a lot of help, there was no hesitation and no happier child when my baby boy was born and he obviously had none of Smiley's problems.

Angel and Aspie Boy
As a baby he was perfect and so so cute, but also demanding and cranky and odd...he couldn't seem to control his body properly, he had unusual interests and was very late to talk.

I was worried, but most people just thought he was 'being a boy', and oh she loved feeding him and playing with him and watching him.

But as he got older his behaviour got more and more difficult. He got so angry and upset when things did not go his way, we would all end up in tears. Once he was diagnosed with aspergers at least we knew why, but not what to do...on good days they still get on well and laugh and joke and gang up on me by chatting in Irish. They still do things together - cycling, watching DVDs, popping out to the shop for messages.

But none of this happens on the bad days, and there are too many of those.

Aspie Boy and Smiley
In my naivety I assumed that my new baby boy would just accept his older sisters. They were already part of his family, so why wouldn't he? Well I was completely wrong. As a small child he did play with Smiley, but was also clearly jealous of all the time and attention that she needed. As he grew older and started to understand he limitations he began to be fearful of her.

Now he largely ignores her.  Once in a while he will find a toy that he thinks she may like and give it to her.  Carefully.  You see he still believes that he can catch cerebral palsy and is obsessed with not touching her or anything she may have handled.  Meltdowns can be triggered if she sneezes anywhere near him.  This can be difficult to avoid as they sit next to each other in the car.  And in the car he can't escape from her.

She may not be able to get out of her seat but she causes problems in other ways.  As she has got older she has got louder.  She is always happy and always smiles and laughs.  But now she screams with delight and for a boy with sensory issues this is almost unbearable. 

We have sound-blocking headphones for him but its not always enough.  So another reason why we spend so much time at home.  Luckily home is now large enough to position the children at almost opposite ends of the house, so the only time they really get close at home is at meal times and I face her away from him....

Angel
The one promise I made to myself was that Angel should never feel that all the effort was being made for Smiley... and then later for Aspie Boy.  She had to see her parents making superhuman efforts for her as well.

So I was delighted when she started gymnastics and needed lifts and leotards and a trampoline and help getting to competitions....it took up time, and meant dragging the kids out in their pyjamas some nights to collect her, but to me that was important. She did other sports as well, but the gym became her second home and the gymnasts her other family.

My job in PR also helped to make her feel special, because while we didn't go on foreign holidays and other stuff that families take for granted, I was able to provide experiences and freebies that were the envy of her friends and sometimes they got to take part in photoshoots or meet celebrities, so it helped to even the scales. In return she has been a second 'parent', a playful big sister, a pram pusher, a carer and a cleaner, as well as the best daughter any mother could hope for.

Putting them all together...
As a group the biggest problem I have with my children is their different interests. Angel is sporty, the other two are not.  Aspie Boy wants to stay in the house, Smiley wants to go shopping. Many activities worked well though when the children were younger: when Smiley was more portable and Aspie Boy more amenable.

We used to be able to go to the beach for a couple of hours before Smiley got bored, and when she was very little I'd dip her in the sea...thought she tended to turn bluey-purple very quickly! Aspie Boy has only been to the beach once in the past 18 months and insists that he will only go with a friend. But guess what?  Most of his new friends have aspergers and do very little except play video games.

Luckily Angel is now grown up and can look after herself and do her own thing as well as providing a bit of babysitting, so that I can take the other two out separately. Their Dad also does some activities with Aspie Boy when he sees him.

So yes we're an unusual family and life can be interesting at times for all of us including Angel. She's gone along with almost everything with good grace, except for the meltdowns.  They upset us all.

If we could just find a way to stop them then family life would be pretty good...

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Blue Sky has painted such a vivid portrait of her special, unique family here, I feel that I know them personally. I love how her love and concern for all of her very different children shines through in every word she writes.

Aspie Boy is currently going through a very difficult time, with nascent adolescence setting off a string of meltdowns that are becoming increasingly hard for Blue Sky to manage. My heart goes out to her, as she copes with the pain both and practical issues issues of this unfortunate development.

So follow her home to her blog, Looking for Blue Sky, and read more about her family and offer her your support. You will want to read this poignant post about wishing Smiley would speak, and this intense post about one of her son's first meltdowns.

Also read this short but devastating post about Blue Sky's wanting her old, sweet son back.

Finally, you should follow Blue Sky on Twitter, and go "like" her on her Facebook page.

Thank you so much, Blue Sky, for writing so beautifully about your family and bringing us into your world. It is my pleasure and honor to call you my bloggy friend.


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SNSS: A Family Mosaic

Today's wonderful SNSS guest is Mama Apples of the blog Apples and Autobots. And she? Really has her hands full. Really. And that's an understatement. Think I'm exaggerating?

The tagline for her blog is: "The chronicles of two parents raising four children: a high energy little boy with Asperger's, his girly girl neurotypical twin sister, a quirky four-year-old daughter (who also has autism), and a nineteen month old baby boy in Early Intervention. Oh... mom also teaches middle school. Welcome to the crazy train!"

Yes. Four kids. Three on the spectrum. And a household full of love and understanding. Right now they are holding their breath to see where on the spectrum the littlest one lies, hoping that they can stave off regression.

Mama apples is a wonderful writer, a pleasure to read. Incredibly moving when she's being serious, incredibly funny when she'd being lighthearted.     

So come now, read about her unique and beautiful family here:

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A Family Mosaic - by Mama Apples

My husband and I are the parents of four children.  Three of them have autism spectrum disorders and one does not.  Our children’s relationships are incredibly complicated.  I suppose they are like a mosaic — beautiful from a distance, but if you peer closely, you can see the cracks and gaps that we’ve had to fill in over the years, the places where the pieces don’t quite meet.
 
The individual pieces of our mosaic are, on the surface, beautiful in their simplicity.  Yet, careful inspection reveals complex patterns and even a few stress cracks born of being forced together.

‘Bot is our oldest child.  He’s nine, and he has Asperger’s Syndrome.  He’s like a gaudily painted piece of porcelain.  He’s a clown, a connoisseur of slapstick.  He tries to be a little tough guy, but his autism leaves him brittle, easily broken by too much sensory input or changes in routine.
 
His bright, colorful personality isn’t always enough to camouflage his chipped spots. He doesn’t socialize well, even though he desperately wants to, leading him to say embarrassing things to strangers.
 
At times I can see his twin sister visibly cringe at his antics.  Their relationship is strained more than non-womb mates because Princess never gets a break from him.  They spend recess at school together.  They can’t help but be compared to each other by teachers. This is true of all twins, but autism adds an entirely different dynamic to their twinship.

Chronologically they are only a minute apart.  However, ‘Bot is years behind Princess socially and emotionally.  Princess has remarked before that she wishes she’d have had a twin sister instead of a twin brother.  I can’t help but wonder if she feels twice cheated—denied the sister she wanted and forever paired with a brother so intrinsically different from her.

Princess is like a piece of highly polished quartz rock.  She is very girly and creative.  She has a sparkling smile and a keen, sharp mind.  She possesses a lovely spirit.  If you spend a significant amount of time with her, you can see that she is mature for her years.

That in itself is not a bad thing, necessarily, but her maturity is the result of nine years of having autistic siblings.  Princess has to make concessions to her siblings on a daily basis, whether it’s giving up TV time for four-year-old Tinkerbell to watch the same movies over and over, or allowing ‘Bot to push the shopping cart, even though she really wants to do it.  It’s easier not to fight him.  And it’s very unfair.

However, what worries me the most for Princess is not the number of times she has to give up a little.  Those are minor scratches on the surface of her soul.  It’s the deep gouges that worry me.  The times when her twin explodes and focuses his rage on her.  We’ve had to physically restrain him many times to keep him from hurting her, because it’s true, you know, the saying that you hurt the ones you love the most.

The scars left when even her accomplishments are a sacrifice.  You see, she’s an honor student, and ‘Bot struggles with academics.  Who do you think gets the most homework help? 

Chores are a battle in most families, but my kids take it to a whole other level.  ‘Bot and Tinkerbell have a hard time with following directions and staying on task.  Princess always ends up doing the lion’s share of the work.

We can keep glossing over these things, but eventually there will come a point that a girl’s day with mom just isn’t going to be enough to make her feel better.

And yet, she’s so strong.  She was one of ‘Bot’s first therapists, forcing him to engage and interact.  I firmly believe that the early socialization she provided him made a dramatic impact on the course of his autism.  She’s a wonderful big sis to the little ones.

Yes, she gets frustrated, especially with Tinkerbell, but she’s so good with both little ones.  She does speech a lot with Tugboat, and she did floortime with Tinkerbell.  She endures with a smile and adheres to her siblings with loyalty and love.  However, inside of her is a little girl who has always had to be so much more than just a little girl.

Tinkerbell, our daughter with autism is like a fine piece of china.  She is wafer thin, most likely from hours and hours of pacing and walking in circles.  She inspires protectiveness and gentleness in everyone she meets — well, almost.

On one hand she and ‘Bot are perfect playmates. ‘Bot’s social age and abilities are closer to age five or six, so he and Tink are on the same level in many ways.  Also, ‘Bot likes to be in control of play situations, scripting what should happen to everyone involved.
 
This works out brilliantly with Tinkerbell, because like many girls with Asperger’s/HFA, she is a born imitator, and she loves being told exactly what to do!  They generally play well, but we have to watch them carefully because ‘Bot tends to get too rough without meaning to hurt her, and when he does get mad at her, he’ll push her down or hit because he doesn’t make allowances for her age.
 
She also picks up his bad habits. A few weeks ago she embarrassed my poor husband by talking about her “nuts” in the OT waiting room!

Tinkerbell loves to follow Princess around.  Out of all of our kids, I think that their relationship is the most “normal.”  Tink is the typical annoying little sister, and Princess loves her to bits.  I get so much joy out of watching Princess paint Tink’s fingernails (after Tink has spent hours begging), and I can’t help but laugh at Princess’s incredulous expression when Tinkerbell immediately washes the polish off.

Tugboat is my beautiful, colorful piece of glass, the sharp edges of autism clearly present, but there’s time yet for Early Intervention to dull the edges.  His place in our mosaic, however, is already clearly established.  He is the baby of the family. 

Tinkerbell calls him “Baby Wild.”  She has a point. He manages to wreak havoc everywhere he goes.  He plucks blocks out of Tinkerbell’s line of toys.  He lines up bottles of Princess’s nail polish.  He loves roughhousing with ‘Bot, to the point that they aren’t allowed to play unsupervised. 

He is loved by all of his siblings, though it was a little rough between him and Tinkerbell in the beginning.  His wet fingers and toy grabbing didn’t exactly endear him to her.  Tugboat has communication delays, but the love he has for his older siblings shines through his eyes.

My husband and I practice the art of parenting day by day, carefully shaping and arranging our mosaic.  I have no idea if we’re doing it right.  Nothing is set just yet.  Sometimes one piece of our special puzzle needs to be mended, so we place it in the center and do the best that we can to hold it together.
 
Does that make any of the other pieces less important?  Of course not.  If one piece were removed, our beautiful creation would be left with a gaping hole, and we’d never find another piece that could perfectly fill that space.
 
What frightens me is the delicacy of the entire thing.  The idea that the pieces could be so easily broken, even our strong little chunk of granite.  I just pray that the glue we’re using, our love for each other and each of them, is strong enough to weather any storm.

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I am so impressed by Mama Apples, how she takes her family's very complicated situation in stride. I struggle to balance the needs of my two. I can barely imagine doing it with such a disparate four.

And now that you have read her here you MUST go back and read her on her blog, Apples and Autobots. This is not optional, you really must.

Start with this post about a TOUGH day in sibling-land. Then go to this lovely one, about those moments of seeing how different children are in comparison to others, and coming to terms with acceptance.

Read this one, but not when you are already sad or depressed, it might make things worse at first. It's the tale of an awful meltdown, last winter and Mama Apples most painful experience, as a parent. And then this post is a call to arms for how folks can help a family when they see a meltdown in progress.

In this post, she has a line that I just found so wonderful for both its imagery and how it resonated, that I just have to share it: "I wish I could pry off the top of his little head and look around for a while at what's going on in there."  Anyone who has a child with a communication disorder, or whose kid thinks in a unique and normally opaque manner is nodding their head right now (and hopefully not looking for the can-opener).

Finally, you should follow Mama Apples on Twitter, and go "like" her on her Facebook page, where she is just as outspoken, lovely, lyrical and intimate  as she is on her blog.

Thank you so much, Mama Apples for gracing my blog with your beautiful words about your amazing family. (And for saving my butt. You know why.)


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SNSS: Hilarity and the Mermaid’s Brothers

Today Special Needs Sibling Saturdays is host to a very special blogger, someone near and dear to my heart.  While my sensibilities may be close to the "old time" bloggers, the ones who write for the joy of storytelling and connection, I am actually fairly new at this game, having begin The Squashed Bologna just a year and a half ago. 

Shortly after that I joined a collective blogging group, the NYC Moms Blog, a part of the larger Silicon Valley Moms Group (SVMG) which had sister sites across the country. In their LA site, I discovered Elizabeth Aquino who blogs at a moon, worn as if it had been a shell, and I fell in love with her words and her family. 

Elizabeth is the mother to three children, Her eldest is Sophie, who has a severe seizure disorder and developmental disabilities. Sophie has two younger brothers, Henry and Oliver.   

Elizabeth is a poet and lover of poetry (her blog's name comes from a poem by William Butler Yeats), and her love of words comes through in all her posts, be they about her family or food (or both).

So come, read her beautiful words, here:

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Hilarity and the Mermaid’s Brothers  – by Elizabeth Aquino

During the days prior to my writing this post, I attempted to probe both my sons about their feelings being the siblings of a girl with severe epilepsy and developmental disabilities.

Henry is almost thirteen years old and Oliver is ten; Sophie is sixteen and has had a refractory seizure disorder since she was nearly three months old, so both brothers have lived their entire lives as the siblings of a child with special needs.

It's all they know of their sister and while they have expressed, over the years, their frustrations and sorrows that she can't talk or “be normal,” I can honestly say that their attitude toward her is one of nearly complete equanimity. It is what they know.

Henry, in particular, has been almost preternaturally compassionate and loving toward his sister since he was a tiny child, and their relationship to this day is very special and significantly different than that of Oliver or even my or my husband's with Sophie. Sophie often reaches out with her hand and toward Henry's face, gently stroking it and staring into his eyes.

She seems to know and understand his gentleness. He is able to help me with her, even during a seizure, and stay completely calm.

Oliver, on the other hand, has always seemed more conflicted about Sophie and her disability, and whether this is just a reflection of his superior (to Henry) ability to convey his feelings (however outrageous and negative) is unclear.

He has taken a very active, nearly heroic role in the fight against the word “retard” at his school and in our neighborhood, yet he is also the one who is quick to tell me that he's not sure he wants to take care of Sophie when I die.

And yes, he actually told me that, back when he was about five years old.

Henry, on the other hand, has decided that when he's older and very rich, he'll have a padded room for Sophie to live in and be safe from seizures, and maybe even a robot to decipher her humming noises.

With that said, and going back to my initial inquiries to better prepare myself for this post, I had this conversation with Oliver:

So, what's it like for you to be the brother of a girl with epilepsy and special needs?

Um, not again, Mom? Oliver answered, and he rolled his eyes.

Come on, I said, help me out. What are some of the feelings that you have about Sophie?

Oliver sighed and started walking round and round the dining room table where I sat, listening. I was also casually flipping through a magazine, not putting any pressure on him.

Upset, he said.

Boring

Scary

Frustrating

I hate it.

I looked up at him, and he smiled.

Just kidding, he said and he rolled his eyes, again.

O.K., I asked him, I hear you on the negative stuff. Now tell me something positive.

Without missing a beat, Oliver replied, It's kind of cool to get to park in handicapped parking spaces.

Before I could protest, though, he smiled and said, again, Just kidding.

I think this brief exchange speaks worlds for what the experience is like being the little brother of a young woman who has big, ugly seizures nearly every day and who can't talk and needs assistance with all life activities, including walking, eating and personal hygiene.

I know that Oliver feels every single emotion that he listed, and I know that when he watches his sister seize at the dinner table he is at once horrified and numb to the spectacle and chaos. Being upset, bored, scared and frustrated by the often chaotic goings-on in our home are normal emotions, to be expected, and I have made a very conscious effort to not only expect them but to accept them from my sons.

What has surprised me, though, is my boys' resilience to this chaos and the strength of their own personalities, their ability to find hilarity and absurdity in the otherwise traumatic events they witness as they live their lives.

Because they are living their lives, their own lives, and while their sister's life is entwined with theirs in significant ways, and her disabilities often demand great emotional and circumstantial sacrifices, they are on their own unique journeys.

While I worry occasionally that they have never had a normal day because of their sister's epilepsy, and I yearn to know what it might have been like to not have this heavy, heavy weight to carry for them and with them, I know that their sister's life is entwined in theirs in ways that set them apart from their friends and my friends' children, make their journeys perhaps more difficult but far richer and wider.

We cope as a family, my boys cope as siblings, with great senses of humor, a natural ability to laugh – at ourselves, at one another, at the situation.

Jesus Christ, Oliver yelled one morning when he'd bumped into his brother, running out the door to his carpool. He had just helped me to move Sophie from the bathroom to her bedroom, her body stiff and jerking, toothpaste dripping from her mouth and his as we had been brushing teeth when the seizure began.

While my first impulse was to admonish him for the language, I had to laugh. You have to laugh.

I think we cope, as a family, because we love Sophie as she is and because we see by her still, graceful presence that she is about love, pure and simple.

And then there's the awesome parking...

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I am so moved by Elizabeth's acceptance of her children for who they are. All different. All truly known and deeply loved. 

Now that you have read this eloquent, moving post here, you will surely want to follow her home to her blog, a moon, worn as if it had been a shell, and read more there. You'll also get to see pictures of her lovely children and the beautiful things she bakes. 

Read this post about an extraordinary ordinary day, and this incredibly moving post (with lovely photo) about Sophie and her presence. Or maybe this moving stream of consciousness post about a morning with Sophie and Henry. 

Or possibly you would like to hear a little of the gallows humor that helps Elizabeth get through life, as in this post about yet another dinner with seizures.

Finally, Elizabeth is yet another SNSS guest who can also be found at Hopeful Parents, where she writes and is a member of their board. 

(Unlike the other SNSS guests so far, Elizabeth is not on Twitter and doesn't have a Facebook fan page. So you'll have to just read her on her blog.)

Thank you, Elizabeth for gracing my blog with your lovely words about your lovely family.


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