Hopping on the Special Needs Blog Hop

I don't normally participate in bloggy bloggy things like memes and hops, just not in my nature. But obviously this one is different, these are my people (or at least one set of them.)

For the second Thursday in a row, a lot of us special needs parenting bloggers are linking up and saying "Hello" to each other, and helping to make it easier for people to find a big community fast. 

Support and community, while important to everyone, is doubly, triply, a thousand times more so for parents of kids with special needs.  The experience of having a child who is not just trundling along the usual development path can be terrible isolating. There you are at the moms-of-twins group you've been attending since the babies were born and everyone is talking about how great it is that their 18 month-old twins are playing together and they will never be lonely, and you have to go off to the bathroom for a good cry because one of your twins has absolutely no interest in his brother and would much rather stare at the ceiling fan. 

Also there is so much information a parent of a child with special needs must have.  Getting the right evaluations and services for your child can be literally a matter of life and death.  Or at least the difference between hamstringing a child vs. giving that child the opportunity to rise to their highest possible level of functioning, a chance for a life fully lived.

So here I am joining in.

I hope you hop around and visit all these wonderful folks.

If you are a special needs parent (grandparent/loving supporter) please add your blog, too. And don't worry, your blog doesn't have to be all about special needs (mine certainly isn't) but if that's a part of who you are, then these are your people, too, so on hop in!

It may not be beautiful, but it’s mine, all mine!

Hey, look up at the URL (for those of you who are techno-weenies like me: yes, that's the little thing in the window at the top of the web page that starts with "http:")

Notice anything different?

Yeah, I got my own domain now, baby.

www.squashedmom.com

No more .blogspot.com for me!

I'm a grown up now.

OK, maybe that's pushing it.  So let's just say my blog is growing up.  And right now it's still going through a few growing pains.

I know, the name of my blog and the name of my domain are now NOT the same.

Because "The Squashed Bologna"?  Is a mouthful.  And everyone spells "bologna" differently.

Personally I just don't get it, because "baloney" is just wrong. Oscar Mayer hammered that into me at a young age.  For all you young things reading this who were not kids in the '60s & early '70s, and are head scratching at that reference, watch THIS. Now imagine seeing THAT nearly every day for years. You'll never spell it wrong again.

And while "The Squashed Bologna: a slice of life in the sandwich generation" is going to remain the name of my blog -- since I so clearly AM still quite stuck smack dab in the middle of the sandwich, and since "squashed" doesn't even begin to describe how I'm feeling most days, what with my Mother-in-Law's passing, and Jake's new school, and all my Mother's neediness -- I wanted something... catchier for my domain name.

And since I'm squashedmom on Twitter, I figured why not go for it.  So I'm rocking the mom.com rhyme thing, now.

And it may help make clear that I'm a MOM blog, not a food blog (or an Italian travel blog, if you try to pronounce "Bologna" that way.)

But now that other part: My blog is fugly, I know that.

Here is what my blog looked like as I was writing this post.  Hopefully soon you will be viewing this post in the archives on my lovely, newly designed blog and need this visual reference for the fugly.

I need to get a real design, not just me noodling around the Blogger design system in an momsomniac haze at 3 AM.

I need a banner and a logo and a cute little button.  And a kick ass background. You know: a DESIGN.

Problem is I have no idea what I want to do with it.

Or rather I have too many ideas, and none of them quite right.  I'm not cutesy and girly, but I do love flowers.  I'm not the stark and modern minimalist type either, although I love abstract imagery and design elements.  I admire the simplicity of black words on white and bold black & white graphics but I am a lover of color, and generally, the more saturated the better (or hadn't you noticed the lurid purple of my current "design"?)

And then I need to somehow have the design match up at least somewhat with the content and/or tone of my blog. But not at all literally.  Because visuals for squashed?  Bologna?  The whole sandwich thing, as a metaphoric image?  Yuk.  Not a food blogger, remember?

So I'm a bit stumped.

And I know I need to get a designer to do everything right, as I'm not really a techie (though I love to dabble in a little HTML tampering occasionally.)  And once again, the problem here is that I don't have the $$$ to lay out for what is currently a hobby (although of course I have dreams of "the more".)  Also I am finding I have a fierce and stubborn DIY streak emerging around this, have caught myself nursing delusions of teaching myself HTML in order to do it all on my own. Overnight. Not. bloody. likely.

So bear with me for now, while I work this all out; visit a thousand blog designers' sites; ponder why I love the designs I love and brood over if they would work for me.  There may even be an intermediate step on the way to fabulous.  Because the more I have been looking at other blogs to get a feel for what I do and don't want on mine?  The more dissatisfied I am every time I go back to look at mine own.  In fact, it's driving me a bit crazy.

My only excuse for the current look? My favorite color is purple. Has been since I was six.  And not wanting a literal image, I went for an abstract purpley light burst.  It could be worse.  I think.

So, let me leave you with the family story I borrowed this blog post title from:

newborn me

When I was born I was tiny.  My mother had been eating and gaining weight like a normal pregnant woman, but in "know-nothing" 1960 they wanted women to stay svelte, you know, for their husbands?  So Mom was told she was much too fat and the doctor advised her to SMOKE MORE to help suppress her appetite.  I kid you not.  Doctor's orders.  The result was me weighing in at 5 lbs. 3 oz. and looking like a plucked chicken.  A scrawny, wrinkly, underweight baby.  That they had to plop in a warmer. Idiots.

It is one of the mythic stories of my childhood, that when they finally brought me to my mother, (after she hollered and yelled and refused to do anything unless they. brought. me. to. her. NOW!) my mom scooped me up and cooed at me: "You may not be the most beautiful baby in the world, but you're mine, all mine!"

And, yes, I fattened up and a few weeks later was supposedly a knock-out (and Dad even used me as a model for his advertising photography portfolio.)

Mother and child, 1960  by Jim Steinhardt

So just bear with me while I get through this awkward phase.  The ugly duckling will turn swan.  Eventually.  Give me just a little more time.  Thanks!

P.S. If anyone out there is or has a great and reasonably affordable blog designer, please let me know!

Breaking my Heart

I was at Jacob's school yesterday, picking him up.  His class was a bit late getting back, having taken advantage of the glorious October weather to sneak out for an end of the day visit to the park. That's one of the many things I love about his new school, how they get the kids out and about as much as possible; fresh air and sunshine, folks! So, I had some time to kill in the school's lobby.

Have I mentioned before that Jacob's school is a small, private, Special Ed one that is co-located in, and practices active inclusion with a "regular" school?  In fact, it's in a Catholic School, so yes, my little Jewish boy is going to school in a big old church.

I was hanging out, casually observing the comings and goings, noting one lovely boy who seemed to have a lot of energy; bounding up the stairs, he had tripped and fallen quite hard, but seemed unscathed.  He looked so adorable in full "miniature man" uniform with neatly pressed oxford shirt and tie slightly askew.

I then got to witness a scene which is now seared into my memory and haunting me, that I need to share here and use it to stand on my soapbox for a moment:  I watched a mother eviscerate her son; just scald him with scorn, in an attempt to get him to measure up.

The boy looked to be about Jake's age, maybe 8 or 9, and was, in fact that same boy I had seen going up the stairs.  The mother was yelling at her son because he had failed to write down the homework assignment. Again. She accused him of being lazy, of not caring, this sweet boy with such an earnest and eager face.  She told him that there would be no snacks until "things improved."

This was very clearly a repetitive pattern, that this boy always fails to write down the homework assignment, and his mother was exacerbated.  She saw a willfully disobedient child, a bad boy; she saw a failure. He clearly felt himself to be a failure, too; tears sprung up as he repeated his excuses as to why this time he had once again not gotten the job done. 

You could see in his eyes the pain, the panic, that he just didn't know why he kept failing.  I wanted to go hug him, but couldn't, I'm a stranger. 

His mother saw laziness, badness.  What I saw was this: a boy who had ADD and/or executive functioning disorder written all over him.  I realized I had felt a spark of recognition earlier, watching him stumble up the stairs, that radar we have to detect our own kind.

And it broke my heart to see him so broken and his mother's heart so hardened against her disappointing son, who had no idea why what was so easy for others was so hard for him.

"Did the other kids get the assignment written down?" she asked accusingly, making it clear that if they did & he didn't the failing was his.

And I couldn't say anything, not a peep, this woman was a stranger, a parent at the school in whose good graces we need to remain. And I?  I was one of the moms of the "weird kids" and she certainly would never want to think her son was like one of those.  So I kept my mouth shut, and wept inside my head, and felt my heart crackle.

I couldn't say it to her, but I'm saying it here to all of you, my readers. Many of you have children with special needs yourselves, so you know this shit already, but for those who don't, I say this:

If your child repeatedly fails at something, especially if it is something that their peers seem to find easy, do not immediately go to finding fault with and blaming your child, thinking they are lazy and stupid, bad and wrong.

Your child is clearly STRUGGLING, your child needs HELP, not a kick in the teeth.

We are not all the same.  We have different brains.  Just because something is easy for YOU or for your other three kids, doesn't mean it will be for them all. 

If your child were blind would you yell at him for not being able to see the blackboard? No? Well, what if your child has a brain that CAN NOT organize itself?  Trying harder is not going to cut it,  and his feelings of failure will just make his gears spin faster, in place.

He needs understanding, and actual help.  Executive function tutors, specific accommodations, maybe even thoughtful medication.

"We can not keep doing your work for you. It is your job to write down and understand the homework assignment." She said, the anger and disgust palpable in her voice.  "You're on your own here, you're on your own."  Wow.

Those words just felt so chilling, and I could only imagine how abandoned that boy must have felt in that moment.   And I'm sure she thought she was being a good parent, helping her son to shape up.  She is involved, she cares that he succeeds in school, she wants him to "do it right", to be a success.  And she has no idea that she is undermining him completely, eroding his sense of self worth and setting him down a path for repleted failure and pain.

I think: If her son was drowning, flailing about in a pool, would she stand there and yell at him that he was "on his own" there?  Assume that it was his fault he hadn't learned to swim better, that the coordination of remaining afloat was just beyond his grasp?  Would she call him stupid and lazy and tell him to just swim harder, look at all the other kids not drowning?

Or would she toss him a life preserver, or maybe even jump in herself and try to save him?  And then help him figure out why swimming is so specifically hard for him, get him the special instruction he needs to be a more functional swimmer.  Or, if that's impossible, the equipment he needs to not drown.

So I ask again: Why are we parents so quick to find fault with our children; to see willful disobedience, laziness, moral deficit, when a child is struggling and clueless? Why punish when a child needs help?

School is a big, scary pool.  Don't let your kids drown.

OK, off my soapbox now.

I hugged Jacob extra tight when he finally came out, told him how proud I was of him, how hard he works every day to wrestle with what comes so easily for many others.

And I vowed to catch myself when I, too, start to blame his brother, my ADD kid, for what he can't help: his race-car brain trying to navigate these pedestrian streets.

Photo credit: Jim Steinhardt "Boy looking out window" 1948

Vintage Print available for sale at Gendell Gallery

Wordless Wednesday: Crispy around the edges

Thank goodness for Wordless Wednesdays, because frankly I am deep fried right now.

Losing Blanche; funeral; sitting shivah; the wonderful but exhausting annual Halloween Party at our friend's Kingston house, driving the 4 hour round trip to the Halloween Party; Jacob's continuing ridiculous bussing saga; New York Comic Con WITHOUT Daddy this year; sleepless night to finish my Hopeful Parents post; ANOTHER 3-day weekend full of sibling animosity... I am just scooped out again, like I was this past spring when my father passed away.

So instead of my usual, labored-over writing, I offer up here a few illustrative pictures from the past two weeks:

From the awesomest Halloween Party (a thousand "thank yous" Meilan & Billy):

 Um, let's be clear on this: Ethan DREW the design in black marker. Mom (that would be me) was the one with the pumpkin gut hands.

Boo!

I think my favorite part of this day was deep into the evening, when it had gotten dark and the kids were running around outside, barely supervised. They had been together all afternoon and had formed a cohesive kid gang; were playing games whose rules they could not explain to us even if they tried. This is a freedom that city kids don't ever get: to be outside at night in the true dark without a bossy parent standing right over you. I love being able to give my kids the magic of the inky night, even if just a few times a year.


From NYC Comic Con:

Beyblade forever!

Happily obsessed

Ethan found this booth with the soon to be released Beyblade Metal Fusion video game for both Wii and DS. Lucky for us, we own both platforms (Oy!)  He LOVED playing the game, had to be torn away from the booth kicking & screaming. Can you say "top of the Hannukah list"?

It was so sad to be there without my husband who is a comics professional and was actually a consultant for the Con. He had put together many of the wonderful panels, was supposed to be on or moderating many of them. A highlight of going to the Con has always been visiting Dad at his booth, walking around with him and being the proud son of. We felt his absence keenly this year.  I wanted to bring the boys anyway, was glad I did, but wow, was it crowded.


Finally, this is why I love coming to pick Jacob up from his new school a few days a week (the bus ride home is ridiculously long.)  How much I will love doing it in freezing snowy January is questionable. But for now:

I wish you all a happier Wednesday than I'm having. I have a stupid cold and am going to crawl back into bed now & pull the covers up over my head. Until I have to leave to go pick up Jacob.


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

Looking back, looking forward, being Hopeful

Well, it's the 10th of the month, so once again you can find me here:

My post for Hopeful Parents today is: Six years and counting

I reflect on it having been six years since the October when Jacob received his first diagnosis on the Autism spectrum. 

I was devastated. 

And mightily pissed off at the people who could have told me sooner but didn't, and thus wasted his time for six important early months. 

So go, read!

See you back here tomorrow.


(Also, maybe, if you feel like it, you might want to vote for me by clicking on that annoyingly flashing "Top Mommy Blogs" button on my right hand sidebar.  Truly silly stuff, but if I make it into the top 25 it will bring me more readers.)

Blanche, Age 93

On Monday, with her sons at her side, though by now far from knowing this, my mother-in-law, Blanche, slowed her breathing down, slowed it again, and then, she finished. Her chest stilled, no longer struggling to catch just one more breath. She slipped away gently, connected to people she loved, much the way she had lived her life.

I was not at her side, having left the hospital an hour earlier to take my own elderly mother to a doctor’s appointment. Before I left, I said my goodbyes, gingerly stroked my mother-in-law’s soft hair, because I knew it was going to happen in the hour I would be gone.

And sure enough, as I was helping my mother on with her coat at the conclusion of her quick, uneventful check-up (“you’re great for 88, Mrs. Steinhardt”) my cell phone rang.

“This is it,” I told my mother, as there was not one shred of doubt what would be said when I answered.

“She’s gone” my husband choked out the words. “It was peaceful, she just… stopped.”

We knew this was coming, her body clearly worn out after a long, full, fulfilling lifetime, but still, it’s never easy. My husband loved her very much, will miss her greatly.

She had rallied last week for a few final conversations: a meaningful one with my husband that he will always cherish; an evening with grandchildren, marveling at a belly full of her twin great-grandsons-to-be.

We are saddened maybe most that she will never get to meet them out in the world. But it is also good that this circle of life will tumble on. She will so clearly live on in the memories of those whose lives she blessed with her presence, and through her genes, now dispersing themselves on though yet a next generation.

My husband’s family is large, and Blanche much beloved within it. There will be tears and hugs aplenty in the next few days.

Tomorrow, a funeral, and then within a few weeks: a birth, a double bris, a continuation of family, which meant the world to Blanche, my mother-in-law.

A Funeral in Our Future

I let Ethan stay up very late tonight.  He was anxious and keyed up (we all are) and putting him to bed when he's in that kind of wound-up state is always quite the challenge.  This is an understatement on the order of calling the Atlantic Ocean a rather large pond.  Yet another gift of ADD.

I just wasn’t up for the fight of it.  So I let him play and read and watch TV until his eyelids got droopy and his body got floppy and I carried him to bed and let him skip brushing his teeth “just this once.”  And still, he needed to talk once he’d settled into his nest of blankets.

“I don’t like funerals” he said “why does there have to be a funeral?” 

“Nobody likes funerals, honey, but it’s what we do, it’s part of saying goodbye to the people we loved.”

Just then his father came home from the hospital, poked his head into the boys’ room to gaze at the sons he has barely seen these past weeks of caring for his ailing, failing mother.  Hearing Ethan still awake, he leaned in for a goodnight kiss. “Family hug!” Ethan requested and we squeezed ourselves together around him. 

“I miss you”

“I miss you, too, Daddy”

“We’ll spend some time together soon, I promise. After…”

And his sentence trails off.  We know what the after is, no need to say it yet again. 

“I am very sad” Ethan tells me in between yawns. “Tears jumped out of my eyes when Daddy hugged me.”  Unbidden, cartoon images of little teardrops with black spindly legs jumping around Ethan’s head made me smile.

“We’re all sad right now, honey, this is a sad time. But we'll be sad together, help each other through this.” were the last words he heard tonight as his breathing grew simultaneously soft and louder, his hand holding mine slowly released its grip towards slumber.

I tiptoed out of the room as the dancing teardrops on Ethan’s pillow waved their cartoony arms goodbye, promising to keep watch over my sleeping son.