Tag - identity

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It’s So Loud Out There
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Contemplation
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BlogHer and Friendship
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July 13: Sometimes
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Clouds in the Sky
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The Five-Year Epiphany
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Camaraderie
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A Slow Fade
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Writing My Way Out
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Starting Fresh

It’s So Loud Out There

I know I’ve been silent. Everything feels muffled to me these days — the way the streets do after a new snow. I reach out, I reach within and I come up empty. The words fail me because the feelings are all Pay attention to us! Don’t be rational about it, just wallow! On Saturday morning I sat in a parked car and sobbed. In that moment I felt outside myself, a bystander to something foreign and a little embarrassing. The me outside myself looked down at the me inside her car and asked Do you feel better now? Did you just need a good cry? Will you snap out of it now?

The morning did not start well. It began with a fight with Twins Dad over dishes. Of course all epic fights begin with something this inane, clearly standing in for bigger things. I do everything. I don’t feel appreciated. I’m scared. I’m tired. I feel like a bad parent. Who cares if it’s true, it feels true in that moment. At one point I stood in the kitchen and screamed at the top of my lungs, exactly the way Sam does when he doesn’t get his way. I felt outside myself then too. The me outside myself laughed at the me screaming in the middle of her kitchen.

I mean, it was a little funny — hours later, after we had hashed it all out and were speaking again. I realized that I can only change the way I react to this life, this huge life that we’re living — I can’t change much else.

Contemplation

Life has been rough lately. The longer I go without blogging, the harder it is to get back here. It’s not the boys — they are actually doing great — firing on all cylinders. It’s me. I’m struggling. They are six now, which means that I’ve had my nose to the ground taking care of all the details for 4+ years. During that time I’ve juggled many things, including work, while sticking to an insane schedule of therapy and school and doctor’s visits.

I am not complaining, even if it sounds like I am. This is what we do, right? Have a baby (or two), grow ’em those early days and months when you’re still oblivious to what’s coming down the pike, get an autism diagnosis, watch your world do a 180, learn new special-needs language, morph into a hysterical mama bear and take care of the details. Right? Right? This is what a mother does even if there’s no autism to muddy it all up.

John is thriving at school — the irony isn’t lost on me. I can hardly believe I disliked his new teacher at the beginning of the school year. I hope she would forgive me for being so overprotective, for the conclusions I jumped to before giving her a chance. I observed him in class one day and my jaw dropped when I saw him write his name on his own and read a handful of sight words and call out numbers “41! 36! 52!”. How often I underestimate him. He’s a smart, smart boy and he has a teacher with the perfect touch — gentle and kind yet persistent and motivating.

Despite my concerns for Sam’s social life, he is doing just great, thank you. If you ask him,  he’ll tell you all about his friends. His teachers report that everyone likes him, tell me my concerns seem out of left field, unexpected. Academically he’s above grade level and was one of only six other kids in the entire first grade to get a 100% on his math assessments. So what if he struggles sometimes in his approach, he’s figuring it out and getting there.

So what does this all mean? Could it be that I’ve lost myself in the pursuit of their well-being and happiness? Am I really that cliche? Am I looking for problems where none exist? It feels like I’ve been doing battle for so long (early intervention, speech therapy, OT, social skills, play dates, IEPs and parent-teacher conferences) that who I was before I became Autism Twins Mommy has phhhtt! …vanished. It’s like this dream I have sometimes — I am standing on a crowded street and the press of people rushing past makes me feel both rooted to the spot and frantic to join them all at the same time. Alas, my legs won’t move and I forgot where I was going.

As a freelancer, I’ve watched the economy shrink my work by two thirds. By the time I raised my head to deal with it and contemplate returning to the work force, I discover that I am overqualified for most jobs and lack certain skill sets that new grads already bring to the table. I’m that cliche too! When did it all happen? And if I’m not a graphic designer anymore, who am I? Other than having the privilege of being Sam and John’s mom, what else fills me up? What else will pay the bills? What fills you up?

So blog friends, this is why I’ve been away. Feeling blue, contemplating moves. Writing about it — saying it aloud if you will, feels like a seismic shift in the ole attitude.

BlogHer and Friendship

I can’t remember the last time I was away from my children for more than an overnight or how delicious it can feel. And not just any overnight, but TWO overnights, and nowhere near home but in NYC, a city that practically pulses with possibilities. Before you think me a heartless, cold mom, I was pining for them barely 24 hours in, flogging myself for abandoning them. I did quickly recover — it was New York after all, and I was surrounded by my tribe.

Blogging is powerful. There is no doubt it’s changed my experience of being a mother. Some days, it’s what keeps me moving forward. I’ve watched the annual trek to BlogHer and never imagined I’d have the ability to join, but then I heard about a planned autism panel with women bloggers I’ve read for some time: Stimey from Stimeyland, and Shannon Des Roches Rosa of Squidalicious, both parents of a child with autism. Suddenly it changed from I could never go, to How can I not?

I’m so glad I did. In many ways, meeting my tribe helped me meet myself again. I am a mother of two amazing special needs kids, and god knows that is my starring and most fulfilling role. But I am also a woman who has interests and passions separate of that and being around my tribe, a group of women each so special and unique in her own right, each struggling and celebrating the same things as me — well, it fed my soul, propped me up and made me proud.

I know that I would not have survived the last four years as well as I have without my blogger friends. Such a real group of women, from Christine my awesome roomie, to Niksmom and PixiemamaKristen and Jordan, Melissa and Kyra and Stimey!

I adore each and every one of you. It was a pleasure.

July 13: Sometimes

Over the last few days I’ve been fighting despair. I don’t often write about the days that knock me down because who wants to read about that, really.

Writing when you feel sad or depressed means acknowledging the source of your sadness. It means pulling up a chair in the middle of your own pity party. It means owning the feelings, sitting with them, sometimes thanking them. You run the risk of feeling worse before you feel better.

Write, press Publish, release. The good. The bad. The fully-formed thought, the more nebulous one. I imagine my words hanging here in cyberspace and they alight on your screen — are they little stings of familiarity, are they met with incredulity or do you have days like this too?

Sometimes I feel my mission is to paint a happy face on it. Twins. Autism. La-di-da, big whoop.

Sometimes I go weeks, months, without posting because I can’t find the happy and I can’t bear to sit with the alternative.

Sometimes autism is much bigger than me. Sometimes I back down and let it call the shots.

Sometimes I don’t think I can do this one minute longer. Sometimes I burst into tears from the frustration, the exhaustion, John’s lack of communication. Sometimes I feel that autism is blotting me out.

Sometimes all I can think about is how John will always always always need me, even when I’m walking with a cane, even when I’m senile and can no longer see.

Do you see? I must be superwoman. I must live forever. It’s exhausting.

Sometimes.

Clouds in the Sky

I’m straddling two worlds. Here I am in the NT world, walking my son to school, chatting with other mothers about reading levels and volunteering in class and play dates. And here I am over here walking my other son to his bus, his hands flapping with excitement as it rolls up, handing the aide an extra bag because we’re working on potty training at school this week and it requires daily replenishing of dry clothes.

The two worlds collide in a way that surprises and unmoors me. Sam has been invited to a classmate’s house for a play date that I have yet to schedule because of John. The other mom knows of John but has never met him, and so instead of tackling the issue, I hedge. What will I say? Can I bring his brother, oh his brother has autism and will probably perseverate in a corner… could Sam come over to play by himself? And do I really let my 5-year-old with his own set of issues go to the house of someone I barely know?

How do I manage John’s needs with Sam’s increasingly more neurotypical ones? Just the fact that he’s already making friends at school tells me that he needs to have as many of these experiences as possible. Especially since the perceptions that some seem to have of him make me squawk with indignation.

Like at back-to-school night. I approached Sam’s teacher to say hello and to tell her that after hearing about their day, I now understood why he was obsessed with drawing and cutting out clouds. He always seems to process the things he’s learned by recreating it as soon as he gets home. She greeted me warmly and said, “Sam is so smart! What a unique way he has of seeing things. When he shares his ideas in class, the other kids always seem to get it.”

Another mom was waiting for her turn to speak with the teacher and overheard our conversation. Later she said to me, “Wow, Sam sounds so smart!” I agreed, saying something about how he always surprises us. Then she asked, “Is he smart like Rainman?” I’d like to say I had some witty comeback, something to make her wither like I did on the spot. But I was so taken aback that the most I managed was “Uh, no.”

It made me immediately regret being open about our road to diagnosis back when they were barely two. There are too many people who only know the label. Too many whose expectations and impressions are already tainted by a word, a word so loaded in this age of Jenny McCarthy and Autism Speaks, that we butt up against ignorance all the time. Next thing I know this mom will see the latest Autism Speaks video and assume that’s what my life looks like and it infuriates me.

Here’s the thing: autism is just a word. It’s a word that encompasses too much in my opinion. Autism is a spectrum of disorders and no person has the exact same chaotic mix (even my identical twins). Autism Speaks would have you believe that not only is autism a dark menacing cloud, but a black vise imprisoning our children. Yes, they want people to contribute money to their cause. Do they need to instill fear and spread misconceptions in order to do so? Can’t our lives, challenging as they no doubt are, be represented without alienating the autistic community and a good number of parents as well?

What about the parents of the newly diagnosed who are looking for hope? What about my own children? What if Sam saw this video and thought that’s who his brother is? What if another child said to him My mom says you have autism like Rainman, and he thinks of himself this way, as someone with something that other people would wipe out? What about all the others out there, not bad people, but people whose only knowledge of autism is the version spewed by Autism Speaks?

Yes, I often feel despair. But this video left me feeling the worst despair I’ve felt in a long time.

No, our lives have not been easy, but whose have? There is no doubt that autism has set us on a course we could never have imagined, but now that we’re on it, could we imagine another? You can’t separate autism from my boys any more than you could separate clouds from the sky. Depending on the light or your perspective, those clouds are either menacing and dark or beautiful and an intrinsic part of the picture.

Some days they are both, I am human. But if I lived under that dark cloud all the time, what kind of mother would I be?

How about instead of the fear-mongering, Autism Speaks works harder to talk about the therapies and supports that could make my boys’ lives easier, not more difficult? No? How about the creation of a new organization that spreads a kinder message of inclusion, hope, and acceptance, that educates others on autism’s many facets, both good and bad? That would be a group I could put my support behind, that would be a message for which I would walk on the National Mall.

Autism is not the reason life is hard. Life just is. It can also be spectacular and has everything to do with how we feel on a cloudy day.

The Five-Year Epiphany

Dear Boys,
You are five now. Five! Today as I watched you run free through the grass and circle the house, here in one of the most lovely places on earth, I realized that for so long I have kept you tethered to me. I realized that my grip on you must loosen and give, that I must live with my fear of losing you. I know, you’re still only five for pete’s sake, but I must give you both room to be. Despite autism, I have to let you breathe.

Sam, you talk non-stop, it is your favorite sport. You roll words on your tongue and at times, pelt me with them. You are quite capable of making a deal. I know that when I tell you to stay close to the house where I can see you, you will (grudgingly) do it. You will parry and counter-offer, but so what. We are communicating and I know you’ll stay near, stay safe.

John, for so so long, a wide open space has seemed to mean the freedom to run away from me. Or perhaps it was simply your running to something — the sound of the wind, your face upturned to the sky, squinting at the sun. Whether a parking lot or a field, you were off, oblivious to danger. And there I was, sprinting behind you, scared and trying to stop you. Knowing that I had to catch you, while panic chased me. I have never felt that you were safe if your hand was not tightly clasped in mine.

Today was so sudden, you escaped together. We pulled into the drive with a car full of groceries and after getting out, my arms full of bags, you took off. Together you took off up the yard laughing. I yelled, “Sam!” and of course you ignored me. John, you soon disappeared around the garden and behind a tree. I dropped the bags and started after you, a tight knot forming in my chest. I yelled again, “Sam! Help me find your brother!” and you were great, you did, I think sensing my urgency.

There you were, John, up at the garden, going around the perimeter studying the beautiful lines of its fence. I saw the pure joy on your face as you squinted and flapped. You did not take off down the driveway and down the street where I imagined you would. I guess that’s when I started to breathe again myself, hot and sweaty from the effort but so relieved that you were still here.

I wish that you could parry with me like your brother, that I could know that you understand. But I think I’m beginning to see that you do, even if just a little bit. I’m afraid, though, that I will still always reach for your hands. My gorgeous, gorgeous boys — I love you enough to start letting go. And I realized this today, the day you turned five.

Camaraderie

It’s hard to be a special-needs mom in a typical mom world, it just is. When other moms in my neighborhood get together with their children, the mood is jovial, the cares are few. The kids fly off together exploring rooms, toys, finding things to entertain, their imaginations keyed up like violins. The moms gather in the kitchen like moths to light to swap stories, the minutiae of their days. The conversation is spirited and topical and tinged with neighborhood gossip… did you hear so-and-so did this? no! really?

It is more than that they all seem to speak the same language — which they do, of course. It’s that they do so without straining to hear whether one of their children has figured out how to unlock the screen door and is now running up the sidewalk about to dart into the path of a speeding car…

(It does not matter that I’ve already flitted back and forth “Just to check!” at least 15 times to confirm my worst nightmare only to find him still sitting there with a spray of playing cards around him. I’m certain the next time he will escape.)

No one else has to keep an eye on their still not potty-trained child because he’s making some suspicious sounds across the room.

As a consequence, I never fully participate in these play dates — nor do I enjoy them very much — even as I crave them. I am certain that my cheeks blaze with the embarrassment of being THAT mother, the overprotective one, the one who thinks everything is of possible peril to her children.

We are fortunate to live in a neighborhood rich with community. Neighbors know and look out for each other — we are so fortunate. There is an active and caring mom’s group, one that provided home-cooked meals to my family for three months after the boys were born. Most everyone knows that my boys are on the autism spectrum. A very few know what that actually means.

This summer has been punctuated by invites to join the neighborhood in pool outings and afternoon play dates and because of our incredibly packed schedule, we have missed most of it. I say that I’m too tired to go and that the boys are exhausted at the end of their long days, but what I’m really feeling is a certain weariness of spirit, the separateness of being the special-needs mom, the isolating feeling that keeps me from the easy banter at the kitchen table. There is this heaviness weighing me down.

Like now, here with these lovely women who just want to be my friends, who try to include us at every turn, who have never once been unkind to my children. How do I shake this weight? The camaraderie of shared experience, that’s what I crave and what brings me here again and again — more often to read these days, but increasingly to share. To share and shed some of this fatigue, my spirit fatigue.

And yet here? Now? Watch my spirit visibly lift with the dazzling smile that John flashes me right before rushing into my arms. I feel lighter just listening to him ask for a dvd in his tiny voice: “Yummy, Yummy, Wiggles?” My heart fills and spills over just listening to Sam read about weather and cyclones.

My boys are both my weight and my light, forever linked, teetering for balance. And I think, There it is! The shared experience.

Without a doubt, though, my spirit could use some serious personal attention, some me time, if you will. My blog friends, do you know what I mean?

A Slow Fade

I want to talk about disappearing.

Yes, there is the obvious disappearance of posts from my blog — but I’m talking about the slow fade of my joie de vivre. Over the last two years, since the boys were diagnosed, I’ve been beating a slow retreat from me: from who I used to be, or thought I was, and from the things that made me happy: reading a book, having lunch with a friend. Writing. I’ve put myself at the bottom of my list. Internet, I’ve let myself go. Yes, I’ve put on the obvious physical weight that no longer comes off as easily as it once did, but I’m also carrying around the weight of you, Autism. It is convenient, I know, to pin this crappy feeling on our daily struggles with you, and perhaps it is a little unfair. But Autism? You’ve been kicking my butt lately and I feel like kicking you back.

If I were not trying desperately to figure out why John is yelling “Ready, Set, Run?!” over and over as I also try to clean the poo-strewn walls with Clorox wipes…again…I would really sit down for a moment and try to recapture a time when I felt hopeful. And happy. I know all of this may sound maudlin and a little over-the-top. I mean, there are numerous happy moments too. Really, there are. It’s just that where I’m sitting right now is shrouded in fog so that it’s hard to make them out.

The sleepless nights continue. Winter break was too long, too unstructured. John must must must be potty-trained soon. This is a stage I am quickly tiring of and it scares me. What if he is never potty trained, god help us. Could we still be changing diapers when he’s five?

Even as I sit here, all pissed at you and rightly so!, I feel guilty. Guilty! How can I blame my unhappiness all on you, Autism? I guess I should take some responsibility for letting you take center stage. I’ve done that I suppose. You did not make me eat that bowl of ice cream tonight. You did not cancel my lunch today.

A couple of things have happened recently: first, I found Facebook, or Facebook found me. I don’t know, but the assault of people I have not seen or heard from for 25+ years is really making me feel old and a little dizzy. Second, while out shopping with my younger sister a saleswoman asked if I was The Mother. Can you imagine? Well, the fact is that I am 18 years older, and I am a mother — not hers — but still.

So I feel like picking a fight with you, Autism. I know you are not really my nemesis, but you’re not my friend either. And you’ve done plenty lately to make me a bit irate. I promise, though, to start ignoring you when you jump on the furniture and draw poopy pictures on the walls. I vow to make you do the slow fade. Instead I will draw John near and wait breathlessly until he says his new favorite word: Hug.

And I will move myself up a little higher on my list. A new year, an old resolution.

Writing My Way Out

I’ve been tagged by Jordan at The Wonderwheel. Thanks Jordan, for helping me out of my writing slump!

The rules:
A. The rules are posted at the beginning
B. Answer the questions about yourself
C. Tag 5 people, let them know in a comment on their blogs that they have been tagged.

What were you doing 10 yrs ago?
Ten years ago I was a month away from meeting my husband. I lived and worked in a large urban area as a magazine designer. The only children in my life were my nieces and nephew and they lived in the (gasp) suburbs. Ten years ago I did not want to get married or have children. Obviously I don’t know that person anymore.

Snacks I enjoy:
Chips and chocolate. Not together.

Five things on my to-do list today:
1. Meet with client
2. Work on project (babysitter here today)
3. Bank
4. Post Office
5. Laundry

Things I would do if I became a billionaire:
I would:
…not worry about every single job I do or do not get.
…stop appealing every denied claim from our health insurance company.
…instead hire a lawyer to fight for us.
…start a fund for those not covered by insurance.
…find the best school/program for my boys and not care about the cost.
…start a magazine that celebrates people with autism.

3 bad habits:
1. Procrastinator
2. Pack-rat (although I love to purge)
3. Eating the entire Chipotle burrito instead of saving half for tomorrow

5 places I have lived:
1. Fort Lauderdale, Florida
2. Denver, Colorado
3. Granada, Spain
4. Arlington, Massachusetts
5. Dover, New Hampshire

Jobs I have had:
1. Waitress
2. Cashier
3. Hostess
4. Windsurfing instructor
5. Graphic designer

Things people don’t know about me:
1. I had perfect vision until two years ago when I suddenly needed glasses to read. And see.
2. I was an extra in the movie “Forrest Gump”.
3. Worms completely freak me out. When it rains? It’s hard for me to go outside.
4. I’m fluent in Spanish.
5. I hate milk.

Instead of tagging five people, I leave it open. If you feel like participating, leave a comment and direct us there!

Starting Fresh

Okay, I’ve gone a little nuts. Give a woman three free hours a day and look at all she can get accomplished: I’ve cleaned, steamed, painted, bleached, sorted, classified and thrown away. I’ve put our lives, or at least our house, in order. It’s only been three years of clutter and chaos and dust build-up, so why should I attack each new, self-imposed project with such zeal? Because at last my world feels a little lighter and I can breathe a little easier.

And hopefully return to a little bit of blogging.

My two boys are doing great in school. After the first week of boarding his own bus and adjusting to the traumatic fact that I would not be joining him on it, Sam is in love with his new routine: his teachers, his new school friends, his bus drivers and aides. And he knows all of their names and can spell them too. Every day. In fact, Sam is reading everything. Of course books, but also signs just about everywhere — in the grocery store, library, gas station — sounding the words out when stumped. He is a sponge. The hardest part about Sam going to school, really, has been on me and not being able to watch him through the one-way mirror. Not knowing what his day looks like.

John seems to have adjusted to the longer day — he is gone from 9 to 3 leaving me and Sam to our own devices for lunch, and after, until he gets home. While John can tell me even less than Sam about his day (i.e., nothing), he has a great team that writes extensive notes in his notebook and calls me on a semi-regular basis to keep me updated on his progress. He remains his sweet self in the face of much being asked of him, and it has become clear that they love him almost as much as we do. You can’t ask for much more than that. They have exposed him to an augmentative communication device and tell me has been very interested in it — something for us to pursue.

I don’t talk about it much here, but both boys have been taking a vitamin cocktail to treat their mitochondrial disorder. Basically, it’s a (very expensive) liquid compound of about ten different vitamins and co-factors to help relace and replenish what their bodies are lacking. I don’t know if it’s making a difference or not. I am also struck by how very DAN this all is without being DAN at all. We are scheduled for a follow-up with the metabolic disease doctor in a few months. And I’m spending a lot of my free hours writing appeal letters to insurance companies and state insurance boards.

Here’s hoping to see more of my free hours here too.

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