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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SNSS: Dynamic Family Dynamics

Today's SNSS guest, Kate Coveny Hood blogs at The Big Piece of Cake. And I love going to read her there (even though I get hungry for pastry every time I do) because she is both a lovely writer and a positive force in the universe.

Kate writes about all about her adventures raising a family - 6 and a half year-old Oliver and his 5 year-old boy/girl twin siblings George and Eleanor. Oliver is the "special" child in the family, on the autism spectrum with a PDD-NOS diagnosis. In her blog Kate is smart and funny and reflective in a way that I just love.

While Kate writes about her son Oliver and his issues, her blog doesn't focus on special needs. Rather, it focuses on "family" and sometimes just on "Kate" the PERSON. (Imagine that!)

In fact, it wasn't until I asked Kate to write a guest post for this series that she sat down to actively think about what it means to the twins to have a brother who is different. And here are the results...

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Dynamic Family Dynamics - by Kate Coveney Hood

Often when asked about the level of chaos and drama in my house, I'll say that "I have a special needs child, an explosive child and a girl." That pretty much sums it up.

But let me backtrack a bit.

I have three children - Oliver, my six year old, and George and Eleanor, my five year old twins. And just in case you're wondering - no, that age difference was not planned. Nor was the two-for-one pregnancy. But no matter how dramatic and chaotic it may be, I never lose sight of how lucky I am to have these three entirely unique people in my life - to be able to watch them grow.

Like any other parent, I once looked into my children's newborn faces and dreamed about their futures. I imagined them as happy and healthy kids. So close in age, they would be friends. They would grow up together and then go on to attend college, find careers... have families.

I always knew that they were really just on loan to me. I would raise them, but they would eventually leave to find their own way in the world. And I looked forward to watching it all unfold.

We had some basic expectations for the roles they would play, of course. Oliver would be the big brother, and look out for his not-that-much younger siblings. Eleanor would be a daddy's girl because they all are in my husband's extended family. George would be the middle child - even though he is only a minute older than his sister - and as a loud and demanding infant, he seemed destined to be a handful.

And some of this ended up being true. Eleanor is a shameless daddy's girl and George has taken the term "handful" to a whole new level. But Oliver is not your average, everyday big brother. He is my special needs child.

The twins were born when he was 18 months old. And around that time, it was becoming obvious that he was different from other toddlers. His speech wasn't developing with the lightning speed that I witnessed in other kids. He wasn't as social and trusting. He was more interested in throwing blocks in than he was in using them to build towers.

Years later, after special needs preschool and various therapies, Oliver is sweet, handsome boy with severe sensory processing disorders. He also has an Autism Spectrum label: PDD-NOS (pervasive developmental disorder - not otherwise specified).

The behaviors and challenges that qualify him for a Spectrum label are primarily noticeable in his communication and language skills, but he also has some more subtle problems with motor skills. We've been lucky to find a couple of alternative therapies that have been nothing short of magic as far as I'm concerned. And Oliver is always making progress - moving forward. But it's never fast enough for him to catch up to, let alone keep up with, his peers.

And it's not just other kids his age anymore. Oliver is now officially behind the skill levels of his siblings. Over time, George and Eleanor have become my barometer for what Oliver will hopefully learn how to do.

People are confused by our oldest son because he "looks normal." But they haven't witnessed Oliver's daily struggles with things that have come so naturally to his brother and sister. Like sustaining conversation, understanding the rules in games and making friends. They don't understand why it's George who plays light sabers with the older boys across the street while Oliver plays with Thomas trains in the dirt. It should be the other way around, right?

They also have no idea how incredibly painful this is to watch.

For all of my love for them as individuals - all of my gratitude for their health and happiness - it breaks my heart to see my oldest fade into the background while his younger brother and sister become such stars. To see the babies of the family take over so many of the older sibling roles that should have been Oliver's, by right.

And I know that sounds petty and unfair - to expect that the oldest would automatically be the front man for the band...the leader of the pack. But that's the typical family dynamic, right? And didn't I expect to have a "typical" family? Didn't we all?

So my husband and I have had to put aside some of our new parent dreams and expectations for our children - our family. It was hard. And sometimes I still feel a little sad. I worry.

I worry about the near future when the twins start asking questions about why they can do things that their big brother can't. So far, they haven't. They don't compare our family to others. It seems normal to them that George is the one who complains about Oliver messing up his...whatever it is he's doing (remember - George is my explosive child, and there's always a crisis). Or for Eleanor to act as spokesperson for her big brother when people ask him questions he's not yet developmentally capable of answering.

But as we become less insular and spend more time with the rest of the world at large, it's inevitable that my two younger children will wonder why we're different from other families.

To be perfectly honest, I've avoided thinking about this for a long time. On some level, I've been wishing that Oliver would just become "normal enough." That therapies and IEP reports aside, the kids in our neighborhood - and George and Eleanor - would see him as just another kid. Maybe a little goofy or quirky sometimes - but not so much that he couldn't fly under the radar.

Then maybe someday when Oliver would be capable of engaging in a complex discussion, we could all talk about his personal challenges. Together as a family - with Oliver participating in this conversation about him.

It shouldn't matter, I know. But I just really hate the idea of talking about Oliver to his siblings before I can talk to HIM about everything. I would feel like a betrayal. Like it was now me denying him his right to be the older brother.

I may have to do that someday - but I'm not ready. Not yet.

In a way - these ideas are entirely new for our family. We haven't had to think about them.

So I don't have personal stories to tell about how our children work around the special needs that make Oliver different from other six year olds. As of yet, the twins don't really recognize that Oliver is different. He's just Oliver. And I'm selfishly holding on to that as long as possible with no plan for the future.

Until now, I guess. Until I began writing this and reading about the experiences of other families with "special needs siblings."

I've written numerous posts about Oliver's special needs on my own blog, but this is the first time that I've actually addressed the issue of how those special needs affect his relationships with his siblings. And because I've always taken the Scarlett O'Hara approach of dealing with what I have to today, and leaving the rest for tomorrow - I'm now in uncharted waters.

I love the idea of Oliver being the big brother an taking care of his little brother and sister. But for now, and possibly for a long time (possibly forever) that's not going to be our reality. In a couple of years it may be the younger brother and sister standing between Oliver and bullies on the playground. It's still too soon to tell - but not so far off that I can't imagine that possible future.

Will they stand up for Oliver? I think Eleanor would. As a girl, she has an innate maternal side. She seeks to nurture in a way that her brothers just don't. But George? I don't know about George.

He is so full of enthusiasm for life, that he doesn't always notice other people as he races to grab the brass ring. He means well - but he's a scrapper. He may unwittingly trample Oliver in his efforts to follow the older boys with their war games and skateboard ramps. I just don't know.

But I do know that this is going to be painful at times... and I would be lying if I said I wasn't terrified by the uncertain future. That I didn't wonder how many more of my dreams that future will will steal from me.

But I find great comfort in the fact that some of my dreams are already coming true. My children are happy and healthy. They are friends. They are growing up together. They may or may not all go to college, but each one of them can find a purpose in life - something they can consider their career.

Probably the most important dream I have for them is family. The families I once imagined for them included marriage and children. And right now I have no reason to doubt that this is possible for them. For all of them.

My dream of them all having their own families might actually come true. And it might not. But it doesn't matter because whether they get married or not - have children or not - they will always have each other.

They will always be a family.

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I love how much Kate appreciates and values her son's differences, how she hold the bar high in her expectations for his, and all her childrens' future. Also I love (and am a tad envious of) how much her family functions as a coherent unit, caring about and for each other, enjoying each others company and celebrating their uniqueness. Love.

And now that you have read and fallen in love with Kate too, please follow her home to her blog The Big Piece of Cake. where her tag line reads: "Never settle for a small one, and demand a corner piece with a flower" which I think sums up her wonderful attitude towards life.

Want to get to know her kids better? Start with this loving and funny post about Oliver's lack of love for pants. Then go on to read more loveliness about George and Eleanor.  

Want more? Try this one about her kids' antics, or this one about... pretty much the same, and why they had to lock room doors when they were younger.  Also read this beautiful post about trying to integrate Oliver into an activity with typical kids.

And? If you really want funny? Read this post about her twins birth-day, which includes her water breaking suddenly - WITH sound effects - in a fancy hair salon.

Thank you so much, Kate for sharing your wonderful, very special - and DYNAMIC - family with us here today.


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Childhood

I miss my childhood, sometimes, when adult life weighs heavily upon me, the constant needs of others, mostly my children, threatening to drag me under. 

When I am on hands and knees cleaning up a bathroom floor thoroughly splattered in one son’s vomit while my other son calls out to me complaining of the smell, begging me to come to him because he does not want to lie alone in the odoriferous dark.

I miss my childhood most when I am ill, yet still taking care of little people, instead of being tucked into bed myself, steam from the bowl of chicken soup my mother has carefully placed on the rickety metal folding table wafting up, salty pretzels and ginger ale rounding out the prescriptive meal for a nasty strep throat.

What I miss from my childhood are moments: running wild in the Daktari sandpits with my cousins; bouncing on my bed for hours with a friend while eating dot candy;  crashing through the waves with my father at Jones Beach on a hot summers day; sitting, mesmerized by the fireplace at Sacks Lodge on a frigid winter night; falling asleep in the back seat of a long drive home, my head in my mother’s lap, breathing in her Shalimar and the night air; my first real kiss.

And also the era.

My childhood is the 60’s. 

I turned 8 and 9, those seminal kid years, in 1968 and 1969; years which were also seminal to modern culture, when so much changed, happened, emerged, transformed: Woodstock, the assassinations (MLK, RFK), moon landing, Laugh-in, the Tet Offensive, Prague Spring, Andy Warhol, heart transplants, Charles Manson, the Chicago Seven, The Beatles, UNIX, bell bottoms, Sesame Street…

An era I have layers upon layers of thoughts and feelings about. My now adult understanding of it above all, but underneath?  That childhood glow surrounding times lived through, golden and suffused throughout, the images crystalline, sharp-edged while simultaneously encased in amber.

I miss my childhood, sometimes, but there is mostly so much I am glad to have broken free of, from my childhood.

Do not get me wrong, my childhood was not doom and gloom. There were certainly many joys; there were those thousand brilliant moments; there was laying in fields of wildflowers baking in the sun; lobster birthday dinners eaten with hedonistic abandon; I was - and knew I was - well loved by my gentle parents.

But what I do not miss is my childhood self: anxious, awkward, isolated, painfully shy, over-sensitive (SPD), easily overwhelmed, un-centered, uncomfortable in her own skin, cocooned in fantasy, brilliant but clueless.

That is not me now, has not been me for so long I must cast far to remember it.

I miss my childhood, sometimes.

But mostly I revel in my children’s childhood.

Creating the memories with them that they will suffuse with their own golden glow upon recollection; me the mother, whose Tea Rose they will breathe in with the night air as we travel the long way home from our adventures.


This post was inspired by a prompt at Write on Edge (formerly The Red Dress Club). This week's RemembeRED assignment was to write a post beginning with the phrase: ”I miss my childhood".

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


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SNSS: How Will They Know?

Today's SNSS guest? Has more kids than you do. OK, more than 99.9% of you do. She has seven. Which is why Caryn Haluska tweets as @ihave7monsters and refers to herself as the "Monster Momma" (& her home as "Monster House") on her blog Living with Logan.  

Caryn writes about life with Logan, her 3 year old son with issues (ASD, SPD, seizures & severe food allergies) and the rest of the gang, including Logan's twin who has some SPD issues of his own.

It's a busy, busy household. But one that is also clearly full of love and understanding, if rather shy on peace.

Although she gets some flack for it, she stands by referring to her kids as monsters. It's because she means it like Jim Henson's monsters: adorable and unique.

Her blog's tag line is: "What we've learned as a family because we have the HONOR of Logan being a part of it" and that beautiful sentiment says it all about where she is coming from, always.

So now it's time for me to stop talking and for you to read Caryn's lovely essay about her family, here:

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How Will They Know? - by Caryn Haluska

I sit outside, contemplating the opportunity I've been given to contribute to this series. I think about what to write, while enjoying the cool of a late summer night in Southern Utah, breathing in the smell of flower pots dripping with pansies, alyssum and violets, and listening to the crickets sing.

The stars wink at me as I compose in my head what I will write about my beloved Monster House. This is my sanctuary~ a front porch step late at night, and the serenity nature offers.

It is, in fact, the only time I get to have absolute quiet and “me time.” And it never lasts more than ten minutes. So, I've had my ten minutes, and have come in to write. I'm hoping it comes out as well in print as it did in my head.

Life in a family with seven children, even if they were all NT children, would be hectic. Life in a family with seven children, one of whom is on the autism spectrum, has SPD (extreme non-seeker), seizures and crazy amounts of food allergies is somewhat more than hectic. Add in a couple of older sibs with learning difficulties, and a twin with SPD (total seeker), and things just get more interesting.

To prepare for this submission, I asked the monsters (1-4, as #5 was already asleep) to give me three words each about Logan, in no particular order, with no particular subject... just the first three words that popped into their heads when I said Logan's name. They didn't even have to be polite, as long as they were honest.

The Daddy liked this idea so much, he joined in as well, so I'm including his contribution, too.

#1
Cuddle Lion Logan

#2
sweet
honorable
cuddly

#3
cool
cuddly
soothing

#4
honorable
emotional
enjoyable

The Daddy
Attitude
Daredevil
Smart!!

Logan is his siblings' favorite teddy bear. They fight over holding him, and they cry when he's had enough and wants nothing more to do with them. He can make them laugh, and he knows just how to get them to come running with a well thought out shriek.

He can make them jealous, and he can make them proud, all within the same few minutes. Truly, Logan and #6 have brought all my children closer together.

The first thing everyone should know is: Logan and #6 are the babies. They just turned three at the beginning of the summer. The “older kids,” as we call #1-#5, range in age from 17 to 6, so I am extremely blessed to have a lot of help where Logan is concerned.

Logan's phenomenal progress in speech, motor skills, and other areas is largely in part to the efforts of his older brothers and sisters.  So much so, I have had to put my foot down upon occasion and remind them, “Logan is not a trained monkey! Let the child alone for a bit!”

Certainly, we are not without flaws. There have been occasions where one monster or another would become upset with the amount of time it took to arrange therapies, doctors' appointments, write for the blog, talk to other special needs parents, etc. We have had to squash all the monsters' hopes of having a pet because of Logan's allergies, much to the dismay of #3.

My #4 especially, has a rough time. She kept asking why Logan was the only one I wrote about, the only one with a picture in my blog header; at one point she asked why he was the only one I loved.

She is largely the reason for the blog makeover, and my shift to more posts about everyone. I am proud of ALL my monsters. I never want them to wonder.

As part of an agreement I have with the older monsters, I don't write a lot -if at all- about their learning difficulties. They are my #1 and #2, and they read my blog, along with their friends.

They are so proud of Logan. I think their struggles have helped them be more compassionate and understanding with him. My #2 and Logan have a special bond that defies explanation, and it has been so since the very first time they saw each other.

It's difficult for the older ones, I think. They are old enough to understand the definition of the “R word”, and have heard it said in reference to Logan by small minded people around town. But they just don't understand why the “R word” would apply to him. 

It is hard for them to think of Logan as having any kind of disability. They truly don't see it. At the Monster House, he's just Logan... not autism, not SPD, or anything else. He's their brother. And that's how we like it.

When I told them the other day at dinner that I had a meeting to help the school get ready for him, every last one of those monsters looked at me like I was nuts. And #1 asked the question for all of them: “Why? What's to get ready? He's coming to school.”

We agonize as parents. I question myself constantly, wondering if I'm being as accessible to all my monsters as I am to Logan and #6. The Daddy makes a concentrated effort to spend time with each child one on one after work, though he travels for business frequently and his time is not his own as often as he would like. It is things like this, I think, that causes siblings to lean a little more on each other, and grow closer.

I love watching the monsters together. There are fights, certainly. Far more than I am comfortable with. And there are times that the verbal warfare escalates to physical. We have raging teenage hormones and 11 year old drama queen syndrome.

There are twinnie meltdowns that are so intense I simply am not able to be available to anyone else while they are going on. There is jealousy, and resentment upon occasion. I hate having to say to one monster or another, “I'm sorry, baby. I just can't. I haven't slept. Logan and #6 had a very rough night.” It's all too frequent an occurrence, and I have a physical ache every time.

We incorporate family time with therapy. Most times it works. We have disco floors out of couch cushions. We have crazy fun cutting paper with scissors for no purpose other than, Logan likes it and it's great for fine motor and hand/eye coordination.

We go on walks together while the twinnies learn to ride tricycles. We play around with new “Logan safe” recipes. That rubber bread will go down in family history.

Our largest quality is the ability to adapt. I hope we never, ever lose that.

But I wonder, when it's all said and done... will my best have been good enough? Will they all know that they have special places in my mothers heart, that Logan and #6 are not the only ones there?

And how can I make sure of that? How will they know?

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Reading this post, I just kept thinking about what a gift it is for Logan and his twin to have such an involved, loving family. And I want to hug Caryn and tell her: "Of course they know, it shines through in every word you write."

So now that you have read Caryn here, you are going to go follow her home, right? You will find her at her blog Living with Logan. Try this post, where Caryn shares why she lovingly calls them "Monsters", or this one about how hard it is to grocery shop for (and cook for and feed) a child with severe food allergies.

Want to see the magic she talks about between her big boy #2 and Logan? Look at this post here.  Want to laugh? Read this hysterical post about how #5 became notorious.

Also? You are definitely going to want to follow Caryn on Twitter, and go "like" her on her Facebook page.

Thank you so much, Caryn, for sharing your large, wonderful, funny, loving family with us here today.  


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Wordless Wednesday: Beach Day

Really I've been talking about it for days, did you expect pictures of anything else?

I think I may ACTUALLY go wordless here today, let the pictures do the talking. But, um, they're allowed to have CAPTIONS, right? Goooood:

A boat! On a boat to the beach!

Nearly there...

Ocean: spotted!

Yes, it was one of those *perfect* beach days.

After our big swim, Jake spent a lot of time in the sand.

Jake loves him some sand. (SPD)

Ethan, on the other hand, was quite happy in the foamy shallows,

hanging out with his friend,

and helping some kids build a sea wall.

Anyone ever doubt me when I tell them Jake is a sensory seeker? Didn't think so.

 Jake made it his business to get as sandy as possible.

Very sandy.

Very, very, very sandy.

Sandy but happy. Win.

I’m linking up to Wordless / Wordful Wednesdays all OVER the place... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.


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Firework

Katy Perry now takes up real estate in my brainspace. Whether this is for better or worse? Doesn't really matter, it just IS.

Every time I see, hear, think of fireworks - there's Katy belting out "Baby you're a firework..." Pretty much unavoidable this time of year, being the Fourth of July and all.

It's a damn catchy popsong. Plus there's that amazing, moving, meaningful video. It's old news certainly, out since last fall, but I catch on slow, being such an old lady. (You HAVE seen the video right? If not, head to the bottom of this post immediately.)

What really cemented it in my mind was hearing the graduating middle school kids singing the song at Jake's Special Ed school's end of year celebration. To hear these amazing kids, who have faced such deep learning challenges and persevered, singing this anthem of self-worth: "...it's always been inside of you, and now it's time to let it through..."?

Well, I fell in love with the song a little (and bawled my eyes out a lot, thanking the gods of waterproof mascara).

Sadly, we didn't get to see actual fireworks this Fourth of July.  I'm feeling kind of bad for depriving my almost 9 year old boys of this thrill, but it's just so hard to get to see them here in New York without spending insane amounts of time in insane crowds and for 2 out of 4 of our family members that would be sheer torture.

I was about to write "I have always loved fireworks" but then realized this is so NOT true. As a teenager and adult? Yes. Even as an older child, yes.

But as a little kid? Fireworks were a big problem for me. One of my earliest memories is watching them out the window of our Riverside Drive apartment and being shocked, baffled and TERRIFIED because I was in physical pain, and everyone else around me seemed unharmed; pleased, even.

And fire CRACKERS? Don't let me go there. As a child I was truly terrified of firecrackers to the point of being thoroughly phobic. They scared the everloving shit out of me.

One time, after we'd moved to the suburbs, my family had come into the city to go out to dinner with another family in Chinatown. No one quite realized it was Chinese New Year, or what that might mean for me.

When we went in to eat it was still daytime, and relatively quiet. But by the time we emerged in the evening, it was a full-blown firecracker inferno. I had to be carried, screaming and blubbering, down the stairs, through the exploding streets, to the car.

The memory is etched into my psyche. I thought I was going to die.

In hindsight? I can unequivocally diagnose my child-self with Sensory Processing Disorder (SPD), hyper-sensitive variety. Yes, as a child loud sounds were actually physically painful to me. Very.

And as I had outgrown it as I got older, I had just completely forgotten about my childhood sound/pain connection. Until I was reading up about SPD issues after Jacob's autism diagnosis. Then it all came flooding back.

Well, I've always said the apple doesn't fall far from the tree.

We know so much about this stuff now, how it is neurologically based. But back then I was just "weird" and often teased by my peers for being "sensitive." I was also hyperlexic.

But these are other stories for other days (and other posts).

Tonight? I leave you with fireworks. Thanks, Katy!




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SNSS: Sibling Saplings

Today's guest poster blogs as the Spectrummy Mummy at her eponymous blog Spectrummy Mummy.  As you can tell from the vowel choice, she is not American, but rather an Englishwoman, whose American Foreign Service Corp husband has been posted back stateside for the past few years.  

We about to lose her to another country soon, and I was thrilled to have had the chance to meet her recently, however briefly. I can happily report back that she is even more lovely in person than on her blog (never a guaranteed thing, as many of us have found out at meet-ups and conferences). 

Spectrummy Mummy is the mother of two young children, a four year old daughter, Pudding, on the autism spectrum (currently holding an Aspergers diagnosis) and her little brother, Cubby, just turned two, who, while not on the spectrum, has sensory issues. Of the exact opposite type as his sister. 

You can see it's a busy, complicated household. Add in the impending move overseas, and a mother could easily become overwhelmed. Yet somehow Spectrummy Mummy manages to keep her calm, clear focus on her children and what they need; manages to keep an open heart, a loving, thankful perspective.

And then she writes about it so beautifully, too. As you will see here, read ...

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Sibling Saplings - by Spectrummy Mummy

I was born and raised in the same place.  My roots grew deep into the soil.  I shared a childhood with my friends, and with our years of shared experiences, we remained friends as we became adults together.  My chosen sisters.

I wasn't close to my brothers growing up, but planted side by side, as we've grown older, our branches have intertwined.  Though I live on a different continent, I feel that we're probably closer now than ever.

It is different for Third Culture Kids like mine.  My little saplings are transplanted from one country to another every two or three years.  Their roots don't get a chance to bury into the ground, but spread like vines across the world.

Many Foreign Service children find it tough to make friends, and instead rely on the closeness of the sibling relationship-friendship with the only person to understand and share their life.  It is not uncommon for such children to describe their brothers and sisters as best friends.  That is how I imagined things would be for Pudding and Cubby.

The seeds were planted two years ago, when Cubby was born, but the signs of autism were emerging in Pudding.  Pudding's sheltered little world was disturbed by this chaotic, screaming, routine-breaking, parent-snatching, attention-stealing, unpredictable bundle of need.  From the very beginning, she was conflicted about his arrival in her life, resenting and pursuing him at once.

Sensory-seeking Pudding was too boisterous in her attentions, and the sensitive-avoider Cubby would scream whenever she came near.  Pudding would lash out at him, or withdraw into herself.  A relationship between the two of them seemed impossible.

I would try to come up with games or sensory play that they might share in together.  Inevitably, it led to fighting and tears.  Everybody felt frustrated and miserable, myself included.  Pretty pathetic for what was supposed to be fun for all.  So I gave up.

I'd concentrate on one child at a time.  Finding something else to occupy the other, or making the most of Cubby's nap time, or the times that my husband was around so we could, at times, divide and enjoy our only children.  I let go of my expectations of the kind of siblings they'd be, and let them just be.

Now things are really starting to change.  Since Cubby turned two, the developmental gap between the two of them is closing.  They find each other funny, get into trouble together, blame each other for their mischief, and fight too, of course.

But mostly, they play; sometimes side-by-side, sometimes even together.  I didn't need to teach them, they are figuring it out together, dare I say, like ordinary siblings.  Ordinary being a word I don't tend to associate with either of them.

I think of Cubby as a sort of hybrid plant.  He has sensory processing differences, like his sister, but without the communication challenges.  He can already tell us with his words the things that bother him, which Pudding would only show through her behavior at this age.  The more I learn from and about one child, the more I can understand, and apply it to the other.

They are still very young, of course.  I don't know what will happen when Cubby's development surpasses that of his sister.  I don't know if autism will create distance, or if moving will bring them closer.

All I do know is that they are experiencing the world together in a way that nobody else is.  They have a unique connection.  The shoots of a budding relationship have appeared.

It is a connection that grows organically, and is cultivated by the two of them alone.  When Cubby couldn't bear to be touched by his tactile-loving sister, she was the one who covered him in stickers, and he let her.  Pudding struggled to do her yoga homework for occupational therapy, and Cubby was the one who motivated her.

She was the one he sought for a hug when he was distraught at his parents for a blood draw that went wrong.  I just have to leave them to it, which is the part I find difficult.

In amongst the thicket of squabbling and demands, they are flourishing.  They are still very young, and they have plenty of time to grow together.  My hope is that if I can just stop trying to propagate a relationship between them, a beautiful togetherness will blossom.  Perhaps it will be perennial.

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I  am truly touched by this sweet, moving, lyrical post; the image of her children as plants growing side by side is one I will keep with me for a long time.  

I am thrilled for Spectrummy Mummy that Pudding and Cubby are starting to find their own way into a relationship now. I can feel how they will grow together, how Cubby will support and help his sister (when he isn't busy annoying her, as little brothers are wont to do).

So now that you have gotten a little taste of her here, you will surely want to go over to Spectrummy Mummy's blog for more.

Be sure to read this lovely post about her awkward daughter transforming into a Mermaid in the water, this moving one about a day when everything was all too much and Spectrummy Mummy dissolved into tears, or this insightful one about how Behaviour Is Communication (note British spelling, she's an Englishwoman for sure).

Also? Spectrummy Mummy is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 19th of every month.  And she posts at the SPD Blogger Network. (Busy woman.)

Finally, you can find and follow her on Twitter and "like" her on Facebook, where she is just as lovely as she is everywhere else. 

Thank you again, Spectrummy Mummy, for sharing your beautiful, growing, sapling children with us. 

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Thoughts on my son's getting older and getting stranger

An odd, tough twist on a familiar saying keeps running through my mind: "The older they get, the further they fall."

And I know I'm thinking about Jake, and how much distance is growing between he and his twin, as Ethan sprints ahead into sophistication, maturity, leaving his brother in the dust.

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Having a toddler on the autism spectrum can be very frustrating.

However wild your other children are, they can be so much wilder. Or, conversely, uncomfortably tame, absent, self-contained to the point of disappearance.

They can be fearful, unable to explore their environment due to anxiety and sensory issues. Or, like my son, so busy exploring, feeding their sensory hunger that thoughts of safety are, well, I was going to say last on the list, but really? They don't even make the list.

It's more like: Safety? What is this safety of which you speak? Ooooh, shiny & spinning... and... he's off.

But also, in some ways, they are not so unlike other toddlers. It's often a (cumulative) matter of degree.

Many toddlers have tantrums (autistic ones usually more so).

Many toddlers are hard to understand, communicate with difficulty (autistic ones usually more so).

Many toddlers have problems with self regulation (autistic ones usually more so).

Many toddlers put odd things in their mouths (autistic ones usually more so).

Many toddlers are out of control in stores and restaurants (autistic ones usually more so).

Many toddlers screech and make silly noises (autistic ones usually more so).

Many toddlers spin and roll (autistic ones usually more so).

Many toddlers are odd or picky eaters (autistic ones usually more so).

Many toddlers seem "crazy" (autistic ones usually more so).

(and I could go on)

So an autistic toddler, while usually beyond exhausting to his or her family, often doesn't stand out quite so much to the world.

Those of us who are there know, can see the telltale signs, but on a playground you have to look hard to spot them among the general chaos.  They can sometimes pass; pass for "normal" (whatever that is).

But then your little kids grow up.

By the time your children are eight and a half, like mine are, by the time they are in 3rd grade (or something like it), depending on how deep on the spectrum they lie, passing's frequency can be limited, to non-existent.

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I am on the bus with my son Jacob and I know we are annoying the person sitting right next to us. But Jake is happy, talking up a storm, interacting with me. So really? I don't give a shit.

(And some days a small part of me is comparing. Comparing what being out with Jake is like, vs. with Ethan. And it's never good for my brain when I go there, so I try to shut that down fast.)

Our conversation puzzles people, they double take because I sound like I am talking with a much smaller, younger child that I am seen with. Jake makes declarative statements I agree with. I answer simple questions (over and over again) with equally simple answers.

"Is that a Dad, Mommy?"

"Well, Jake, that's a man, he might be a Dad."

"He has brown hair Mommy."

"Yes, he does, Jake."

My voice when out with Jake is less casual, more drill sergeant.

I say to Ethan: "Hey, E, our stop is coming up soon, so lets get ourselves ready to get off the bus."

I say to Jake: "Jacob, Next Stop is ours. Jake! Be ready. OK, Up, now. NOW! Right now, Jake! Stay with me!" I am sharp, directive.

Then solicitous: "OK, Honey this way, stay close, down the steps there you go. Good job!" Like with a toddler. My four and a half foot, 80 pound toddler.

And while the annoyance of strangers I easily shrug off, sometimes I can feel looks of pity floating my way. And the pity? That, my friends, is much harder to take.

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And then there is this:

Jake drops my hand in the middle of crossing a busy street and runs ahead to the other side because the back of the phone booth has a big old ad for Rango on it and he must go worship.

When I catch up to him, puffing (I really am too old for this shit) he is so happy, smiling, pointing (Pointing! Terrific!): "Look Mommy! Rango, Mommy! March 4th, Mommy! Rated PG, Mommy!"

And I need to berate him for running ahead, make him understand how serious an offense that was.

But he is sheer joy at this moment and I hate to make him cry which he surely will when I chastise him.

His eyes do go wide and brim with tears when my voice goes stern and my face turns severe; so fragile is my child, so sensitive.

But it's better than those other days when the wildness is in him and he laughs manically at everything, including corrections. Between the easy tears and the crazy laughter, I don't know which one is harder.

On the days with tears I know at least something is getting through to him.

"I'm sorry Mommy" he blubbers "I'm sorry, I'm sorry..." over and over and I am the ogre who has made my sweet son cry.

But if he is ever to have any independence, if he is ever to have any hope of negotiating this complex world without a chaperone standing by? He needs to learn and remember the basic rules of safely, which at the moment are so far from his thoughts.

So I kneel down and hold my son on the busy Broadway street corner, and slowly he calms, complains his glasses need cleaning now. And as I dry them with the corner of my scarf, his eyes light up. "Rango!"

"Rango, Mommy! Opens March 4th starring Johnny Depp rated PG, Mommy!" he proclaims, enthralled by the re-spotted poster.

Even though it is April. Even though he has already seen it. Twice.

He is happy. Again. And thus, so, wanly, am I.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say


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P is for Poopyhead

P is for Poopyhead

Bet you saw this one coming.

Did you even doubt it for an instant?  I have, after all, written of Jacob's sometime favorite word before.

As always there are so many other P's in our lives from which I could have chosen... Pokemon, Public Schools, (Club) Penguin, Popcorn (Jake's favorite food), Prydain (Ethan's newly discovered realm), just to name a few.

But first and foremost, I suppose, would be Processing whose challenges for Jacob rule his and our lives. 

Yes, that's right... now that I've made you giggle with a potty word, hooked you and reeled you in, I'm going to turn it all around.  I'm going to get all serious and talk about my son Jacob and his autism.  Again.  Sorry, I do that all the time, the old bait and switch.  But it works, doesn't it?   OK, stay with me then.

The Sensory and Language Processing Differences (much gentler, kinder word than "disorder," don't you think) are primary ways in which Jake's autism manifests at this point.
 
It took a long time for me to actually process this information when he was young and I was new to the wacky world of special needs: how Jacob might be experiencing life in a way that would differ so far from my own.

I think it is just so hard for people to understand that we don't experience reality and the world with our senses, but with our brain, through its interpretation of our senses.   And if someone's brain is wired a different way, speaking a completely different language then yours, how can you expect them to draw the same conclusions? 

I remember an early OT of my son's trying to get me to understand how his sensory issues affect all of his learning and his ability to function in the world.  She said: "imagine you are walking on a high wire suspended 200 feet in the air between tiny platforms, and with no net.  Are you going to be able to carry on a causal conversation while you cross it, or do you have to put every fiber of your being into your footsteps?  Well, for your son?  Walking across the room on the floor takes as much concentration out of him as the tightrope walk would for you."

That was just what I needed to hear.  I got it.  Snap.

And then I thought about me driving the car.  I love to have conversations and listen to music while I'm driving, as long as I'm going somewhere I know how to get to, and the road and weather conditions are fairly normal and reasonable.  But put me on a winding, unknown road at night, in a rainstorm?  Shut up and turn that damn radio off, I need to concentrate if we're all going to survive. 

And if conditions change mid-drive and there is already a noise filled car?  It may take a while for me to notice that I am getting tenser and tenser, and in desperate need of silence.  And once that silence has been achieved?  Try to talk to me or flip on the radio and I will get nasty and snappish.

These are really helpful metaphors I remind myself of whenever I start to get impatient with Jacob's being distracted by or flipping out over what are ordinary sensory experiences to me.  Or his need for tremendous amounts of input to make sense of a situation your brain or mine would intuit in an instant.

This photo in no way actually illustrates this post. There is no reason to throw it in here, other than to say: look at my beautiful son, Jacob, enjoying his Snow Day today. And since this is MY blog, I can do that. So there.

And then there's the Language Processing piece, that whole other ball of wax, but I've written about this before (last week, in fact).

And besides, you have a bunch of other blogs to go read, the ones that will actually keep you laughing throughout.  Go, have fun.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And no, I am not the only blogger whose letter "P" post led them straight to the potty this week.

Vote for me yet today?  One click is all you need to show me your love!

A Real Nail Biter

Sometimes change creeps up on you so slowly you don't even notice it, but there's your kid, seemingly suddenly different.  And you know it's truly not sudden, that it has been evolving for some time, but you've missed it, even though it was going on right in front of your nose. 

That happened recently with Jacob.  I looked down at his hand the other day and noticed his nails were dirty.  Wait - what?  They were long enough to be dirty?  Jacob's nails?

Yep, long and dirty; and I had to double take.  Not because I knew I had cut them recently, but because I haven't seen them this long, haven't had to cut them for two or three years.  Ever.

Because Jacob, you see, is a nail biter.  He is a really bad, constant nail biter, down to the quick and sometimes beyond.

Make that "was."

Jacob loves to pet our cat.

And somehow whatever had propelled him towards nail biting in the past, presumably anxiety, has abated.  I am so happy about this, grateful even, and also somewhat sad that I hadn't noticed until now.

You think you are watching your kids so carefully, but some things just do slip through the cracks.  Especially with Jacob, who doesn't talk about the "why" of things.   We are often left guessing as to exactly what's going on.

Three years ago, we had never gotten an answer as to why he started biting his nails.  Never knew what was at the core of his unhappiness, that the biting of his nails helped with.  Also, at the time he hated having nails that stuck up at all, and biting certainly kept them super short all the time.  So it might have started as a sensory issue that then fulfilled an emotional need too.

Which is the cart, which is the horse?  Don't know, probably never will.

But now?  He's happy to have them growing, a little annoyed at me cutting them, but OK with it when distracted by TV.  Why?  What changed?  Good question.  We certainly don't know now, may never know.

Sometimes with Jacob detective work actually helps us to figure out what's going on.  Sometimes an answer appears weeks, months later, out of the blue.  Yet other times the mystery is just that, remaining mysterious, locked inside Jake's head; his inability to explain, a wall of silence.

Three years ago, shortly after Jacob transitioned from pre-school to elementary school, he had a backslide in his toileting habits.  Jake had toilet trained easily, when he was completely ready, at age four.  Really, one long Columbus Day weekend intensive and he was done.  Zero accidents, dry at night just weeks later, too.

But a few weeks into Kindergarten?  He was having poop accidents.

It appeared he was withholding and then when he couldn't hold it in any longer, it was coming out in skid marks.  And of course, once poop is withheld, it gets backed up, becomes hard, painful to release and a bad cycle has begun, difficult to break, especially with a child who cannot describe what is going on with him.

And we couldn't for the life of us figure out what was going wrong, what had set all this in motion.  That school was not his current wonderful school, communication was not a strong point with them. They were getting mad at me, thinking I had lied about him being thoroughly toilet trained.  I was starting to wonder if something really bad was happening to him in the bathroom at his school.  It was NOT good. 

About three months into this, I had taken Jake to the movies.  We were in the bathroom, he had pooped, and when I went to wipe him, he yelled "NO!"

And as I balled up the awful cheap movie theater t.p. in my hand I suddenly had an epiphany:

"Jake is this toilet paper scratchy and yucky, does it hurt your bottom?"

"YES! Hurts!"

"Is the toilet paper at school like this?"

"YES! Hurts!" 
 
Whew!  Mystery solved.  At home, we used soft, moist flushable wipes and our t.p. is the soft expensive kind, too.  I never would have figured this out except for that moment of serendipity.

Jacob, at eight is now able to communicate much more, often initiates conversations.  But still, mysteries abound.  Like the nail biting.  I am happy it is gone, but a small part of me would still love to know why?  Why?

But asking is going to get me nowhere.  Because about important things like this?  Conversations still often have a circular quality to them:

"Jacob, why are you crying? What's going on?"

"I'm crying because I'm sad Mommy."

"Yes, honey, I can see that. But why are you sad?"

"I'm sad because... I'm crying mommy."

"Oh, honey you are crying because you are sad.  But why are you sad, what is making you feel sad? Did something happen?"

"Yes, Mommy."

"What happened?"

"I'm sad, Mommy.  I'm crying, Mommy."

And on and on.  And I can't make suggestions, because anything I suggest he will agree to.  He would make a terrible criminal suspect, easily confessing to the most heinous of crimes, just to please his questioner, to be able to put forth an answer.

I discovered this the hard way a while ago when trying to get a sense of what had happened during a regular day at school.  I had asked:

"Did you do math, today?"

"Yes mommy I did math"

"Did you read?"

"Yes mommy I did reading."

"What did you read, Jakey?"

"I read a book, Mommy!"  OK, that's likely, and details are not his strong point.

But then to test if this was real information or just agreeableness, I threw in a ringer:

"Did you go to the moon, today, Jakey?"

"Yes Mommy, I went to the moon."

Damn!  Back to square one.

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Wordless Wednesday (now with more words)

I was going to skip Wordless Wednesday today because I feel like talking, but I've got a few readers that would disappoint (and I'd hate to do that).  So this post is going to be a double header.

First: a few cute pictures of my family.  And then?  Some chatter because my brain is all a-clatter.  And me?  I like to share the noise.

It's the second day of winter.  Let's take a walk down memory lane today to winters past...

Here's one from 2004:

Jakey and Me, February 2004 (when my hair was still blonde-ish)

Snowy day, December 2005: 

Time to get 3 year-old twins into bundled into snowsuits?  Half hour.

Maximum time 3 year-olds will spend out sledding?  15 minutes.

How about these from New Year's Eve, 2008?   We had been up in Great Barrington and were supposed to return to the city that day, but got socked in by a blizzard.  So we played in the snow for hours.  Yipeee!

That was a lot of snow!

What could be better than a toboggan pulled by Dad?

Snowy Jacob

Snowy Ethan

Looking at these pictures is making me long for snow.  So far this winter: bitter cold aplenty, but no snow.  Sigh.

And now, for part 2 -- those pesky words:

I'm actually feeling human today.  Today, for the first time in nearly two weeks I woke up without feeling like I was something scraped off the bottom of a shoe.

I forgot how reductive pain is, how it strips the layers of the self away.   I have been hunkered down in survival mode for so long, I was shocked by clarity and lightness.

It made me see how I have been not thinking for days.  When you are deep in the brain fog you can't see it, it just feels like atmosphere.  It's only when it lifts that I understand how limited of vision, short-sighted as well as short-tempered I have been of late.  I know I've been less than 100% present, but how much less was not clear until today; today when I am at least somewhat myself.

My beast-brain had been at the forefront, large and in charge; now somewhat quelled.  My executive functioning is up and running (as much as it ever is in this ADD brain of mine, that is) my frontal lobes asserting themselves once more.

I felt like throwing myself a welcome home party.  I've missed me, truly.  But I so didn't have time for that.  I had so much that needed to get done, that I had not just left un-done but hadn't even realized was sliding off the plate.  Especially: arrangements for my post-surgery recovery, which surely involve other people tending to my children for a few days.

Yesterday I slept all day.  Really... ALL. DAY.

I made it to Ethan's class publishing party at his school, got the car re-parked (NYC alternate parking, it was on the wrong side) then came home and collapsed.   Set the alarm for 3:55... five minutes before Jake's bus wait-time begins and thanked the gods that someone else was picking up Ethan to take him to Hebrew School.  Then?  Sleep.

My husband and I have a running joke...  I say: "I'm so tired I could sleep for a week."

He says: "Honey, that's called a coma."

I pretend to consider the consequences, then conclude: "That's OK, I'll take it."

Only yesterday?  It wasn't so funny.  I really did feel that I was nanometers away from not being able to wake.

If you could call the zombie-like state in which I have been carrying out my minimalist functioning  "awake."  It's a miracle that I have been able to execute the bare minimum required of competent parenting (kids are taken to school and picked up, fed, clean, homework done and in bed before midnight - CHECK!)

So you can imagine how happy I was today to be able to think, to function like a normal human being (well, my usual crude imitation of one, anyway).

And all this makes me think of Jake, and wondering how his level of internal distraction and discomfort is contributing to his sometime foggy state.   When he's so busy trying to get enough input to make sense of his senses, there's no room in his brain for the other good stuff.

He clearly has attention issues, but they're not of the ADD variety.  We've tried ADD meds; they do nothing for him, just make him highly cranky and even more distracted (if that's possible) and who needs that?  His attention issues are puzzling and seeing how distracted and completely unable to think I've been these past two weeks gets my brain a-humming (now that it's finally awake).

Anyway, I don't have any answers to this, no conclusions drawn.  Just musings and questions, lines of inquiry worth chasing down a bit, sometime.  When I have some spare time.  (Don't all fall off your chairs laughing now.)

And now my energy is flagging, and the sofa so inviting.  My spurt of productivity of has sputtered out; time for rest and renewal.  If I am going to retain my human form tomorrow?  I must now put down the mouse, step away from the keyboard.

Goodnight, my friends, goodnight. 

I’m linking up to Wordless Wednesday at Angry Julie Monday.

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