Days of Argh

This morning barely seems like morning as I awaken disoriented, dry-mouthed, thick-eyed; crumpled snot-filled tissues forming a crackly halo about my throbbing head. The light seeping in through the gaps between the blinds is wan, green, presaging a stormy day; dank and heavy.

It's not how Rosh Hashannah should be, these Days of Awe nearly always crisp and autumnal, sporting achingly blue skies to be glimpsed longingly from inside the synagogue's hush and thrum.

But I have not been this year, sending the menfolk off without me, this virus hitting hard as the holiday's just begun. We have managed the bare minimum tradition requires: a round challah procured, apples honey-dipped, a family meal shared, a sweet new year requested.

And now all I long for is sleep, sleep, sleep. And the room to stop spinning. And the unholy pile of dishes in the sink to wash themselves. And for my mother to walk again.

No matter how far I go in my thoughts, it keeps coming back to that: this huge lump of sadness lodged deep under my heart like that bubble of acid that would not go away throughout my entire pregnancy, spilling out if I tilted just the tiniest bit off true, to the left or right.

My mother has not been my compass for many years, yet I am hers. All she has left. But I am spinning, spinning, spinning right now, unable to find my North.

The storm outside will not come on, teasing all day with skies darkening and lightening and the air growing thicker and thicker until we are all covered in a sheen of our own sweat though we are doing nothing more strenuous than engaging in yet another internecine battle of the homework wars.

Finally, as dusk comes on and the winds begin to lash, the heavens clearly ready to finally open up at any moment, I must leave the apartment for the first time in days, driven by an empty medicine bottle of Jacob's plus the deep need see something other than these walls and my children.

But one insists on coming with: Ethan who will not be separated, even though that age is coming on soon when I will be the one clinging and fearfully watching his back as he strides away. He proceeds to be helpful, carrying bags as we make a few stops to stock our waning pantry as well as pick up his brother's necessary pills.

By the time we trudge back, laden, dying to peel off the rain jackets that were not really necessary but instead have encased us in our own steamy dampness, it has grown near dark and the wind pushes against our bodies, something substantial to resist, fight against, instead of each other, as we find our way home.

Monday Listicles: The boat that has sailed

Last week I so enjoyed making my list of why I don’t do list posts, that I decided this week it would be a hoot to participate in Stasha’s Monday Listicles thingie. But if I was looking for a lighthearted post?  Um, wow, did I pick the wrong week to start.

Because for me? This week's list is SO not light and fun, but rather fraught with sadness and regrets and tension and worry about all that is not quite right with my family.

The list: 10 reasons why you do or do not want more children!

I struggle often with the feeling that I really should have had more kids. But that boat has sailed.

So I am splitting this list. Some reasons I wish we could have had more kids and some reasons we are definitively not having them. (And yeah I can never do things the simple way, have to put my own twist on them. My contrarian nature rearing its head again.)

First, the reasons we are not having more kids:

1. We are too old. Specifically ME. (Biology’s a bitch and really not fair - guys can still have kids at 70. Not that they SHOULD, but they CAN.) I am 51. Deep in peri-menopause. My period visits occasionally, but mostly just to wave goodbye and thumb its nose at me.  

2. We are too old. It’s not just the biology. We are even too old to adopt. Chasing after a toddler right now? Would probably do me in. And my husband is yet 7 years older than I. Too, too old.

3. Autism. Once you have one the chances of having another increase greatly. Also with parental age. And while having had another typical child would have likely been a boon to the family, another autistic one might well have torn us apart. (Note to my friends with more than one autistic kid: I know you have wonderful families and love all your kids immeasurably. I also know it's tough. I'm just talking about my hopes/fears here.)

4. Money, money, money. We live in a small apartment, barely enough room for the four of us, absolutely not enough room to add another in. About the time I was getting ready to go back to work, we realized Jake was on a different path, and I abandoned my career to become a full time Autism Mom. Money? Is really tight around here.

5. Not just money, but also temperament. While I really would have had 1 or 2 more kids if I could have, my husband, while he loves our sons to pieces? Is just not a kid person. Have a couple of extra kids over on a play-date and his left eye starts twitching. In hell? His job would be kindergarten teacher.

6. We are too old. (Just in case you thought I might be wavering on that one.)

And now, from the department of sad regrets department, why I wish I could have had more kids:

7. I love kids, love being a mom. When the boys were little and they were climbing all over me on the floor I would be laughing away, and my husband would joke that I really had to loosen up and learn to enjoy motherhood more.

8. Amortizing my expertise. I had no idea what I was doing when I had kids & had to figure it all out under the pressure of twins. Just as I would become really good at whatever stage in their development the boys were at, they would move on to the next. If I'd had more kids I could have had some of that "more relaxed because it's old hat the 2nd (3rd, 4th) time around" parenting all my friends with lots of kids talk about.

9. Our family dynamic, with the autism thing? Could really use more kids. Jake really needs a younger sibling to love him unconditionally, look up to him. His dear friends are all 3 and 4 year-olds right now. He loves babies. It would have been great if he'd had one of his own.

10. Ethan could really use a typical brother or sister. Another sibling who is NOT his autistic twin. Someone to play with. And someone to share the burden of caring for his brother when my husband and I are gone, if Jake should still need that.

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So, in an ideal world I would have started younger and had more than 2. Then again, in that world I would also be about 40 pounds lighter, have listened to my mother & become a doctor, and bought Apple stock when it was $5 a share.

But we don’t live in that world, we live in this one, and this is the family I have. And I do so love my boys and our family, just as it is.

So no, we’re not having more kids.

Unless we literally win the lottery, and then with $32 million or so in our pockets?  I’d think about adopting a baby girl or two. (Don't worry honey, highly unlikely. HIGHLY unlikely.)



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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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Not my best

I am having a really hard time this week. A really, really hard time.

It's a limbo week, and that's where I am. Feeling stuck and rudderless in every way imaginable. This is the last full week of "summer vacation" and we have no plans and I have no spontaneity left in me. I was going to try to find somewhere for us to go this week, last minute and depending how we all felt.

We had some options: Vermont to my cousins, a few mid-week days at the beach. But I hadn't counted on Irene and her aftermath. Or on how much my boys after their first week away at sleep-away camp would want to just go home so much. To be, in fact, desperate for HOME.

So here we are.

I have mountains of laundry and unpacking to do, which I am way too slowly working my way through, thoroughly unmotivated but tired of looking at the suitcases in my living room.

And I am so not doing my best mothering right now, finding my boys on these beautiful last summer days mostly inside: one on the Wii, the other on the computer. We live in New York City. I can't just toss them out into the backyard. There IS no backyard.

And I'm on the computer, too. But I'm not writing as I need to, just aimlessly surfing and noting how many more comments and readers other bloggers have. Those by now completely irrelevant BlogHer recap posts that are almost but not quite done? Still undone. I just don't have it in me to finish them.

Until the upstairs neighbors came home late yesterday all of Ethan's friends were out of town. Jake still has no friends. (And I feel sad and guilty beyond guilt that I haven't been able to do anything about that yet.) So playdates aren't happening.

And the two of them together are just awful right now. Awful. Jake in Ethan's face, talking non-stop. Ethan screaming at his brother to shut up and leave him alone. So separate screens is the best I can do right now. Sigh. Biggest sigh ever.

And I am feeling how much this is not how I wanted to parent. I always pictured us as a minimal TV home. Envisioned myself to be the mother leading her kids on nature hikes, visits to the zoo, days at the beach, rainy afternoons spent painting and sculpting, reading books, exploring the city's museums together. Hanging out with other families, frolicking.

But then again I didn't count on autism, and boys who fight all the time, and my utter exhaustion.

When friends write about how they wish they had another week of summer and how much they are enjoying this relaxed time with their kids it just hammers at my heart. Because that is how I want to feel, it's how I expected I would feel. I DO love my time with my kids but individually, because going out or doing anything with them together is. just. awful.

And we are all together 24/7 until school starts right now. And I don't know how I'm going to make it another week and a day.

So I am one of THOSE moms, desperately waiting for school to start (Thursday the 8th for Ethan, Monday the 12th for Jake). And I hate that. I hate feeling this way.

And it's so my instinct is to hide when I feel like this, to disappear. And that's what I was planning to do. But then in my surfing this morning I saw all the tweets about folks who had linked up their posts with (this week's SNSS guest) Shell's "Pour Your Heart Out" linky.

And then I remembered that amazing fact that Aunt Becky had recently written about in a post, how writing actually helps us heal.

And then I thought "I'm a blogger, Damn it! I'm not going to curl up inside myself and hide away, I'm going to write about it."

So here's my ugly, all splayed out on the page... screen... whatever. It's not my best post. But it's all I've got today. So it will have to do.

(P.S. Updated this afternoon: It worked! Feeling much better now, about to drag the kids out to the park. )

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


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SNSS: I am the Sister

Today brings a completely different voice to Special Needs Sibling Saturdays. Last week the stark. raving. mad. mommy. interviewed her children about their siblings…

Now, I bring you Luna, a young woman who is not a mother (yet) but who has a lot of experience with autism… as a sibling. Both of her brothers are on the autism spectrum.

She also has experience caring for children - other people’s - as she has worked as a nanny. She writes as ababynanny on her blog Hand in Hand in Lala Land.

Obviously NOT a Mommy Blog, although she openly admits to “hanging around mommy blogs.” Most SN/Autism mombloggers don’t have paragraphs like this in their posts:  ”I wonder what would happen if I totally started dancing to this song down the aisle of the library?  The only trouble is, my skirt would definitely slip down and I’m not, as such, actually wearing underpants.”

(Oh, to be young, footloose, and fancy free again.)

If you go there, be prepared to hear the interesting, sometimes random thoughts of a bright, funny, unconventional young woman exploring the world and her place in it. 

But first, read this moving post about her experiences as the sister to two autistic brothers, here:

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I Am the Sister – by Luna (aka ababynanny)

I am a 21 year old girl, not yet a mother, but I think a lot about autistic kids because both of my brothers are autistic. Growing up watching my parents try to raise my brothers gave me a lot of huge, huge fears about motherhood.

But reading (some might say stalking) Autism Mom blogs – especially stark. raving. mad. mommy. – is helping me to see how mothers can be content with their special needs families, loving their kids and knowing they are awesome. Right now I'm really coming to terms with my future motherhood.

I am the youngest child in my family, with two older brothers and one older sister.  My oldest brother David (now 32) has Asperger’s syndrome and my brother Tyler (now 30) is mildly autistic with developmental and learning disabilities. Although these guys are my “big brothers,” my sibling relationship with them, growing up, has been far from typical.

When giving a definition of autism, a doctor might tell you about the impaired social interaction. Real life translation: I can’t remember ever receiving a hug from either of my two older brothers.

The doctor might tell you about low IQ.  Well, I can tell you that ever since I’ve learned to read, I have been reading aloud to my eight years older brother instead of the other way around, and we both love it.

The doctor might mention restricted and repetitive behavior, but I’ve experienced the variety of having a brother who can always tell me about the latest movies and Broadway plays, and can’t rest until he’s collected them all on DVD. (Don’t call it obsessive.)  There’s a whole lot about life with autism that a doctor can’t tell you.

In some ways, my brothers are a challenge.  Growing up, when I invited friends over, I had to educate them first. I'd take them to the stairs in the laundry room on their first visit, and clumsily but confidently talk about things like poor reading skills and special ed classes, while they always listened quietly and respectfully.

My brothers required more attention from my parents in many ways. And people with Asperger’s syndrome typically have an emotional maturity rate of about 2/3 their age, so for years I’ve had to deal with the frustration of a “younger” older brother in both David and Tyler.

And yet, overall, I love the experiences I have with my brothers.

As a little girl, it didn’t seem strange - in fact, I was lucky - that the person I played dolls with was my teenage brother, Tyler. David, always very smart, would teach me about interesting things that most people wouldn’t, from ancient history to modern medicine.

Whatever intellect or sociability he may lack, Tyler paints and draws and is one of the most creative people I know.  Despite Tyler’s supposed limited ability to relate to people, he has a streak of compassion that runs deep and that I admire.  

For some reason he has this adorable weak spot for vulnerable women.  He gets tender and nurturing around them. Tyler has a volunteer position (supervised by other adults) taking care of the toddlers at our church while their parents are in class.  We had a single, pregnant relative living with us, and every Sunday he would always bring her a Dixie cup full of animal crackers they had been feeding to the kids.

He's unusually high functioning for someone with his type of disabilities. He can't learn easily, but he wants to SO badly!  He has a voracious appetite for books. He is the favorite visitor of our librarians and the employees and Barnes and Noble, and he can take the bus there himself.

Tyler collects books he cannot read and his teacher used to report him copying from the pages of books for hours, which strikes me, as a lover of reading, as poignant and tragic. He is however quite well read through all the books he listens to on tape. When tested, his scholastic skills fall around kindergarten level, but his vocabulary is relatively off the charts at high school level.

My relationship with Tyler now breaks my heart.  I adore him, but in a very distant way. I used to spend hours playing dolls and writing stories with him when I was little. I brought the writing skills, but he brought the play and imagination.

As I got older, we both outgrew that, and he got... annoying. He could be a such a brat, and I could never work out our tiffs with him the way I could with a typical sibling.

Even being around him, today, as a young adult, makes me feel overwhelmed with frustration. I feel like gritting my teeth listening to him go on and on about some movie.  I think my guilt adds to my annoyance. Why can't I just be patient and accepting? I pray for help with that.

I feel a strong desire to enrich his life. This is because he's so limited by lack of socialization, lack of independence, and lack of, well, the ingenuity and opportunity and comes with intelligence.

I genuinely WANT him to come live with me and my future husband when we have a settled home someday. Nieces and nephews would enrich his life so much. He is pretty low maintenance as far as day to day stuff and needs lots of alone time, so it wouldn't be intrusive or a big deal. Then my parents could have a life.

I was a live-in nanny on Long Island recently. The family went on vacation, and said Tyler could come stay with me.  I excitedly emailed my mom - Tyler had been saving up for a trip to New York, (he loves Broadway) for FOREVER.

Well, I think he was expecting a wonderland, but Manhattan is OVERWHELMING for someone with autism! My mom ended up coming on the trip, and he ended up needing her for support, but also resenting her taking away from our freedom and fun with her stress.

His favorite part of the whole trip was when he and I were alone and I took him out for some "real New York pizza" in a boring Long Island strip-mall. He told everyone about it.

Then there’s my brother David. The way David affected me really messed me up.  I was afraid to have kids.  No kid could possibly have been harder to raise than David.  And ya know it's genetic.

He was hell. My parents did EVERYTHING THEY COULD THINK OF for him. AND NONE OF IT WORKED. They tried to shield me from it, but I could tell.

My poor parents just wanted a simple life.  They wanted to raise a few average Christian kids who would do things just right: go to college, get married, make them some grand kids.

Instead they got psychiatrists and doctors and government aid and social workers up their butt forever.  And my dad, a great provider, has worried constantly about paying all our mental health bills and, as moral support to David, attended a million and one support groups. 

My parents are, and weren't to begin with, the most emotionally healthy people, and I am unique in my family for the way I have addressed that as I became an adult and really worked hard to get better.  But one thing I do really admire my parents for is the way they tried and persevered and supported my brother.

I was supposed to be the good one. Quiet, eager to please, precocious, even "wise," I was their last and easiest kid. Until I hit my preteen years and the stress and lack of emotional support in my home became too much for my hyper-sensitive self and I slipped right into the pit of depression that genetics had ready and waiting for me.

But, too bad for me, my parents had completely been run out of steam for that sort of thing with David. They would angrily have "talks" with me about my slipping grades, and I would get the eerie realization they thought they were talking to HIM, not me. 

They would say, "We've tried everything and nothing works on you." David could not be motivated to change by any reward or punishment under the sun.

But I hadn't done anything...

The thing is, David doesn't just have Asperger's, he has severe depression (that started way too young when he was teased at school), OCD tendencies, severe ADD. He is completely negative and self defeating.  He made a lot of bad choices and brought a lot of darkness into our home.

He was sweet to me growing up.  I was his "favorite," the least obnoxious of his younger siblings, and I cried and ran out of the house the first time my parents had to kick him out for behavior they couldn't accept in their home.  I even watched him be escorted away by a police officer once.

I am PROUD that David REFUSES to think inside the box, I am PROUD that he is so very smart, and PROUD that he always maintained a goodness and sweetness even at his lowest point.  He is proud of his unique approach to the world and absolutely refuses to change it, even though I think it would make his life easier.

He wants to help people, and I'm sure what he's been through has made him empathetic.  He's a cat whisperer, full of faith, and knows everything about everything. He's amazing, really.

Having my brothers around has taught me a lot about open-mindedness, acceptance, and individualism. Through Tyler, I’ve had the opportunity to work with many people with disabilities, including assistant-directing a play for developmentally disabled adults, something I never would have chosen to do if it wasn’t for my experience with my brother.

And occasionally David's quirks can produce comedy that is the stuff of family legends.

Like the time he randomly got it into his head, to write a letter hoping to convince our grandfather that he should, like David, give medication a shot. Our grandfather is probably mentally ill, but is the kind of narcissistic jerk who makes everyone around him miserable, without being aware that he has faults.

From one dysfunctional man to another, David's letter (that never got sent) began with a tactful opening and then went: "It is my opinion that you are insane." The entire family laughed about that for months!

I do have a bottom line.  And it is that my brother's are freaking SPECIAL people.

If I could tell parents anything, it is that autism is not the end of the world. Try to still be happy. David has finally grown up a little, did great with lots of biofeedback, and is slowly taking college courses and wants to become a nurse. He's a good person, always was, and we always loved him.

He's perfect, really. Both my brothers are. That needs to be all that matters.

Oh, and LAUGH.

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I don't know about you, but this post made me laugh and cry. It made me think a lot about how my autistic son Jacob affects his brother Ethan, and what I ask of and expect from Ethan on a daily basis. 

That Luna has been through so much with her brothers and still clearly loves and values them gives me much hope for their future together. 

If you want to hear what Luna has to say about other things, go to her blog Hand in Hand in Lala Land.  

You might want to try this post about actually loving kids, or this one written to the fathers in her life on Fathers Day, or this funny one on keeping a sense of humor about kids tantrums. Also if you just want to get inside the head of a sweet, funny 21 year old? Try this post about, well, you'll see. 

Luna has also written a guest post on Scary Mommy about why it's hard to be a nanny. Well worth the read.

You can also follow her on Twitter, where she tweets as ababynanny.  

Thank you Luna, for sharing the story of your life with your autistic brothers with us here, today.


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Coming Soon: Special Needs Sibling Saturdays

Something new is coming to The Squashed Bologna...

Starting next Saturday, I will be hosting a series of Guest Posts on a theme that I have called: Special Needs Sibling Saturdays

"Why?" you ask.

Good question.

I have never had guest posts here before.  My blog has always felt so personal, so "me," it seemed strange to have other voices here.

And yet... and yet... I have loved guest posting at others' blogs. I have loved the feeling of community engendered on others' sites where there are regular guest posts, especially those with a specific focus, a series on a theme.

I have been especially inspired by these guest post series I have had the honor of writing for: "Small Moments Mondays" at in these small moments, and "Mommypants Moments" at Mommypants.

(It is no coincidence that Nichole and Cheryl are two of the three hosts of The Red Dress Club, the wonderful virtual group that is such a lovely and supportive community for writers, whose prompts have sparked some of my favorite posts lately.)

So I thought and thought about what would fit in here, and about what would be meaningful to me.

And I realized that I wanted to do something kind of new and different. (Because I can't just take an easy, tried and true path can I? Don't even bother to answer that one.)

I thought: "What is my biggest, consistently hardest parenting issue? What do I struggle the most with, what do I truly NEED a community for?"

And it came to me quickly... the sibling stuff.

Because Special Needs kids and sibling issues? An explosive combination.

Nothing makes me cry more. Not the death of my father. Not autism in and of itself. But this: the extremely difficult relationship between my twin sons, one on the Autism Spectrum, one not.

I don't have a handle on it. I have NOT figured out how to make it work in our house. There is yelling, there are tears. There are often two unhappy, lonely, angry boys and a mother who is at the end of her rope in our house. I am not proud of this. I am saddened, deeply troubled.

That my children mostly do not get along, that it is so hard for us to function as a cohesive family unit?  Is probably the single most consistent source of pain in my life.

So that's what I'm hosting a guest series about. Not what I do best, but what I do worst. Because that's what I need to hear other voices about.

I want to know how others do it, and how others don't do it.

I know there are families where the typical children are their special needs siblings best friends, function as mini-therapists.  I know there are families where they have had to make the heart wrenching decision to send a child with special needs off to a residential unit, so dangerous were they to their other siblings.

I know most families stories lie somewhere in between. And I want to hear all the stories.

Because in every family where there is more than one child, and at least one of these children has special needs? It deeply affects the family dynamic, the balance, the rules of the house. What a family can and cannot do together. If, how and where they spend family vacations. Every fiber of the day to day fabric of their lives.

I have written about this myself, here. And I realize that while I mention it in passing all the time, with phrases like "...dreading a four day weekend alone with my boys who get along as well as Tom & Jerry..." I have only ever written a full post about it that one time. I guess it's just too painful.

So I want to create a safe place here for people to talk about this. All of it. The good and the bad. The beautiful moments and the ugly truths.

To spark their thoughts on this, I sent my guest posters a set of questions:

How you handle issues that come up between your kids?  How do the NT (neuro--typical) kids rise to the occasion - or not - of helping out their special sib?  How you juggle vastly differing needs of kids, does someone usually get the short end of the stick?  

What you do when the fighting gets bad?  What you do to help your kids support each other? Does it work? Really? How you scaffold your SN kids interactions w/ their NT sibs? How do you talk to your NT kids about how the SN kid's needs affect or limit your family's experiences and activities.  How do they feel about this?

What you do when the typical sibs friends come over – what you say to them about the SN kid and what you do if/when meanness comes up? What you do when YOUR NT kid is leading the meanness towards their sib (yes this has happened here)?  What have your NT kids said to you about their SN sibs - the positive and the negative.

If all of your kids are SN, how do you balance the needs of the most affected one against the needs of the others and vice versa?

And most importantly of all: how do you FEEL about all of this?

But this is just a starting point. I know this series will evolve, that my guests will write about things I have not yet even imagined. And that's one of the reasons I'm so excited about it all, a chance to learn something, myself, on my own blog. I am near giddy with delightful anticipation.

So that's what's coming:

Special Needs Sibling Saturdays: a Guest Post series.

It's starting up next Saturday, March 26th, which is, not coincidentally, the day after my father's birthday. I know I will be looking deeply backward that day. I needed to turn around the next day and plant a foot firmly toward the future, and what better way than to start this series?

I hope you're looking forward to it, I know I am. The first posts are rolling in and they're wonderful. So stay tuned. It all starts next Saturday...


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With Heavy Heart

As I talk with my friends about their winter vacation plans and travel about the blogosphere reading people's holiday posts, it is with a heavy heart.  I am looking down the barrel of these next ten days with dread, not the warmth and anticipated snuggly joy that abounds elsewhere.

Life with Ethan and Jacob is not easy these days.  They have no relationship with each other, we do not function as a cohesive family unit much.  A moment here, a moment there, is all.  Otherwise everyone is in their own individual bubble with me running back and forth between everyone like a crazy person trying to mold some cohesion where none naturally flows.  And then the fighting, the constant fighting.

Two eight year-old boys, both lonely, under one roof together.  One unable and one unwilling to play together.  And me weeping because of this.

So these long days need to be planned and filled and turned into something other than easy and relaxed, which is what I so need right now as my body continues to twinge and whinge at me and I wait anxiously for my immanent surgery.

I need to farm Ethan out to any of his friend's families who will have him, so he can have time with friends and away from his autistic brother.  And Jacob?  Needs to be played with, entertained, challenged, have as much structure as possible imposed on these odd, structureless days.

And my heart so isn't into it.  I love my son Jacob to pieces, but it is very hard to be his mother right now.  All he wants is all my attention all the time.  And an hour playing with him leaves me drained, limp, spent and turning on the TV with deep guilt.  I know it is bad for his brain, but it makes him so happy and I need the break.

Autism is really hard on the holidays.  On vacations.  Any time that families normally come together with any sort of flow and ease, anticipating relaxed unstructured time, is, instead a time of struggle for us.  I am tense and unhappy, feel put upon and resentful.  And then I have to purge all this and put on the happy face, because my kids deserve my kinder, better self.

Every happy family I glimpse out in the world or on my computer, laughing, playing, just being together drives home to me how much we are not that family.

And this year especially, it weighs so heavily on me.  This first year without my father, my husband's mother.

And with all my gall bladder troubles and the attendant days spent in medical mishegas these past two weeks, I have had neither time nor energy to properly plan this break.  And we cannot go away, I can't risk another attack far from home.

We are set through Sunday, and then?  I will be scrambling to keep my boys anywhere near happy and entertained.

Ethan needs play-dates, Jacob needs someone to engage with him and structure to his days.  My husband needs to finish the sad task of clearing out his mother's apartment, the one she had lived in for his entire life.

And me?  I need some time for me, to rest and to build up my reserves to be ready for my coming surgery.  I also need some happy, relaxing family time.  And I will be getting neither.

There will be a moment here.  A moment there.

And that will have to do.  It will do.


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Mourning in the Morning

This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism. 

Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.  

And Jacob, he screeches like a monster and throws toys.  It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play.  He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.

Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!!  Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!!  Moooooom!”

And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.

And other days it’s hard.  The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.

This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. 

Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then?  They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks. 

I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what?  They all suck.  

Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.

So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.  

A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon dolls -- I mean SOFT ACTION FIGURES (don’t want to trample boy egos here) -- and brought them up to Jacob’s top bunk, put them to bed and woke them up (Jacob’s oldest and most beloved pretend-play scenario) and had a whopping good Pokemon battle.  

I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet.  Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.


NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?”  I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.