March 10, 2014

Derby Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 2:34 pm by autismmommytherapist

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Zach walks slowly into his school’s gym, his Cub Scout Pinewood Derby car clutched firmly in his hand.  We’ve arrived a bit early just in case there’s some irregularity with his roadster, and after all the effort he and my uncle have put into making it I’ll be damned if he’s not going to race today.  We register, then walk over to the weighing station where a kindly man eventually deems his vehicle race-ready, and I breathe a sigh of relief.

Zach says goodbye to his creation, then turns to me and asks if his father and brother are coming.  I look him in the eyes and tell him I’m not sure, but I hope so.  He shrugs his shoulders as if he doesn’t care, then runs off to find his friends.

The truth is, I know he does care a great deal.  My fingers are crossed that the rest of his family will be able to show.

Soon we are all standing for the Pledge of Alligiance, and I focus on the flag while continuing to swivel back toward the gymnasium’s doors.  Zach’s den is called to the forefront as they are first to race, and I glance behind me one more time, seeing only empty space.  I turn back and aim my camera at the top of the ramp (God forbid I should miss a photo opportunity), and just as the Cub Scout leader is finishing up the rules I feel a tug on my sleeve, feel warm breath at the nape of my neck.

Justin and my husband have made it with a minute to spare.

I quickly send Jeff up to let Zach know they’re here, which elicits a squeal of joy from my youngest son.  I position Justin so he can see, and he sidles into me catty-corner, arms wrapped around my waist, eyes staring raptly at the cars waiting patiently at the top of the ramp.  Seconds later the vehicles are released and I see my son’s name in first place, and an accompanying shout of “I won!” resounding throughout the room.

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Zach goes on to take first place in his den (I am ridiculously proud) and after trophies and certificates are dispensed I receive my “victory hug,” after which I feel the insistent tug of Justin’s hand in mine.  I look up at my husband as I transfer my son’s hand to his, and smile.  Today, Zach won.

But the victory was Justin’s.  As I hug Zach one last time and admire the trophy I am certain will be prominently placed in his room I think about what it means that his sibling was here to see his accomplishment today, and send silent thanks to the universe that we pulled this off.

It seems like only yesterday that taking Justin for a ride in a car was a struggle of Herculean proportions- hell, sometimes just taking him to a different room in our house could elicit a mind-blowing tantrum.  Eventually outings became easier until about four years ago, when my eldest decided that very few places could actually hold his interest.  Most of the time Justin is ready to leave within forty-five minutes of entering any locale, which is daunting to a family trying to do things together.

He’s not subtle, my son- Justin makes his wishes known by pulling us toward an exit, picking up his bag, or vocally complaining in a way in which words are not necessary.  Holidays are challenging when we travel, as toys and DVDs my eldest finds fascinating at home seem to lose their allure in anyone else’s house.

Often Jeff and I are tag-teaming for the better part of two hours just so we can eat with everyone and allow Zach to spend time with his family, which we feel is important.  Over time, and by incorporating strategies his teachers use at school, we’ve been able to convince him to stay at events a bit longer, but it’s always work.

This is one of the things I’ve found it the hardest to adjust to- that with Justin’s severe autism, things that are supposed to be fun are often hard work.

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In just the last year since my boy hit double digits I have however seen such growth in him, witnessed a willingness to relinquish his immediate impulses and comply to our demands.  Jeff and I thought long and hard about whether or not to bring him to derby day, trying to balance both boys’ needs by making the right decision.

The truth is even a year ago I wouldn’t even have contemplated it, would have told Zach he needed to be okay with just having his mommy there to witness his potential glory.  As usual he would have accepted my pronouncement with grace, but I know he would have been disappointed, would have liked to have his whole family there to cheer him on.

And for once, he got his wish.

I’m so proud of both my boys, Zach for winning with grace and congratulating the other scouts, and Justin for tolerating an experience that in ABA terms was nothing near to reinforcing for him.  I am again reminded that we’re now in a position to take more chances, to stretch Justin out of his comfort zone, to think in a more positive way about what this family can accomplish together.

It’s taken hard work, lots of repetition, and frankly, the simple fact of Justin’s maturation to pull this off.   But we’re here, dwelling in this place of burgeoning possibility, with our limits being slowly shattered daily.

And thankfully, we’re here together.

January 6, 2014

Tears of Joy

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 4:08 pm by autismmommytherapist

Disney and Halloween 2013 039

“Mommy, tell me a story” my six-year-old with mild autism entreats me, and in the rearview mirror I see him gift me with that grin I know so well. “Ok, who will be in it?” I reply a bit tiredly, but I’m game as he hasn’t asked me to recount one to him in a while, and I’m loathe to relinquish our mutual passion for tale-telling.

“Me, Justin, and monsters” he answers, and for some reason my mind wanders to a story I’d just told him where he vanquished the Loch Ness Monster, ultimately taming her and using the beast to fight the Dark Side.

I soon weave him a story in which his older brother with severe autism is stranded on a raft in Nessie’s lake, is terrified of being capsized by the broad arc of the serpent’s tale. At the end I tell him how grateful Justin is to him for saving his life. I also share with him how although his big brother can’t speak out loud, in the story he talks to Zach in his heart.

I tell my son his brother says “I love you Zach, you are the best little brother in the world, thank you for saving my life,” and I end with a grin. I glance in the mirror one more time and see my eldest rocking out to “Rudolph the Red-nosed Reindeer” then I swivel slightly to see if my latest fable has met with my son’s quite discriminating approval.

In the reflected light of the mirror I see my small son’s head in his hands, fingers nudging his glasses off his face, his shoulders shaking slightly as tears roll down his cheeks.

It appears my story-telling has made my own six-year-old cry.

I quickly ask him what is wrong, and after a short silence ask him if the ending made him sad. He answers that he is in fact crying tears of joy because his brother is talking to him, even if it’s in his heart. He tells me the story was a good one.

I take a deep breath and wipe my own eyes.

In my family we discuss autism all the time. Zach knows and revels in the face he has a “little bit of autism.”  He is aware that Justin quite obviously has a lot. He also knows his brother loves him, evidence of which I provide on a weekly basis. Zach is aware that Justin would never permit another child to be so physical with him, would never welcome the hugs and infrequent rough-housing Zach bestows upon his sibling as often as he can.

He is well aware that Justin’s face lights up whenever he enters the room- that even thought his big brother cannot express his joy vocally, he conveys it through his expressions and his compliance with Zach’s frequent demands. My last child has told me over and over again that he’s okay with Justin having the disorder, fine with the fact he doesn’t speak to him out loud, quite confident in the relationship they’ve formed.

Yet I wonder, for the millionth time, if he really is okay with it all.

I reassure him that while it’s alright to have tears of joy, that it’s always okay to have tears of sadness too. I tell him that I’m sometimes sad that Justin’s autism is severe, that my son who grants me a hundred kisses daily is held captive to his OCD, the rigors of which often render him miserable.

I tell him I wish Justin could have friends like he does, and I see Zach nod his head slightly in acquiescence. I share with him that I wish my first child could talk too, how it’s hard for me not to know what he’s thinking, that I’m certain a vibrant intelligence dwells beneath his almost-mute exterior. I ask Zach if he wants to talk more about Justin and he says no, that he’s okay. He then commands another tale, requests that this one include light sabers and epic battles waged. I tell him I’ll see what I can do.

It is clear the conversation is closed, at least for today. But I know I’ll revisit it many times, encourage him to share his feelings, even his disappointments. We talk a lot, me and my smallest son. Our discussions are something I never take for granted.

So I breathe deeply again, and devise a tale where he and Justin must work together to overcome great evil, each using his strengths to counteract his sibling’s weaknesses. I forge a path where together the boys benevolently rule the world, each in his own way. At the conclusion they remain connected to one another, and reign victorious over any who would threaten them, or their bond.

And as I end yet another saga for my boy, my own heart speaks out loud, wishing it to be a tale come true.

September 4, 2013

Just Different

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:10 am by autismmommytherapist

Summer 2013 115Justin comes barreling out of the house onto our patio with sitter in tow, and I turn in time to see Zach follow his unerring path toward the pretzels, then watch him swivel back to his friend. “That’s my big brother Justin” he says. He continues with “He has autism. His brain isn’t broken, it’s just different.” Zach’s buddy shrugs in response, and the two boys head back to the pool and are soon in deep negotiations regarding our array of supersoakers.

I look around me, but all the adults are deeply engrossed in conversation. No one has witnessed the fact that my six-year-old has just described his sibling as simply “different”, not “wrong”.

It’s a quiet victory, but I’ll take it.

We’ve worked hard in this house to explain the disorder to Zach, to demystify Justin’s obsession with the same three sentences on a DVD, his utterances of “eeeeee” when he’s excited, his ritualistic adherence to routine. Zach has been pretty receptive to all of it, I think in part because he is the younger child, and living with a sibling with autism is all he’s ever known. We have him in an autism sibling group at Justin’s school, and I bring up the concept of acceptance whenever possible (these dialogues take place mostly in the car, which is where most of our deepest conversations seem to take place these days).

He will occasionally say he wishes Justin would play with him, which of course breaks my heart, and then I remind myself he has two forty-something playthings who bend over backwards to accommodate his every creative need, and I feel better. Zach still calls Justin his best friend though, which eases the ache in my heart. I know one day this will change, but for now I cling to his declaration, let it warm me through. He is okay with how his brother was created, at peace with how he diverges in development from his more typical path.

On days when autism sometimes seems impossible, I remind myself I can learn a thing or two from my youngest son.

Zach rushes by me and dramatically announces “I need juice!,” but before I turn to go into the house I grab both ends of his towel and pull him toward me, embracing his wet and slightly clammy form. “I love you and I’m proud of you for what you said about Justin” I say, and he wriggles away from me, but I can see the wheels turning in his formidable brain. “I love you too Mommy, now can I have some juice?” he responds, and I release him back to his friends to do his bidding.

I savor the moment, because all too often things here are just so damn difficult. I need to continue working on recognizing the gifts, to let them fill me and in turn, empty out the darkness. I watch the tableau before me, one child happily engaged in play, one happily munching carbs, and smile.

For once, we’re all at peace.

February 2, 2013

Bond of Brothers

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:21 am by autismmommytherapist

Xmas 2012 005

“I wish Justin didn’t have autism.”  I hear the words softly emitted from my youngest son’s mouth as we exit our church’s parking lot, and my stomach clenches mildly in response. I look in the rearview mirror at my son’s face, slightly obscured by a hat gone askew. We’d just been talking about Moses and the burning bush (I was so proud of myself for retaining at least one story from my own Sunday school days a century before), so his segueway was slightly startling. I took a deep breath, and asked him why he felt that way. He tilted his head a bit and said “Because then we’d like the same toys and movies and books. We could share and I’d have twice as much stuff.”

When you’re five, it’s all about the “stuff”.

I realize I’m holding my breath and I exhale, relieved that for now this wish is so simple, plus I won’t have to resent my husband for not being there to help me handle his query. I continue our drive, and for some reason a set of framed photos hanging in our foyer come to mind. The pictures comprise a triptych, where Zach is static for all three shots. Justin is in various states of watching his brother, then alternately looking at me. Last, in that perfectly captured final moment, he is actually nuzzling his younger sibling, eyes closed, apparently reveling in their closeness.

I’ll admit, there was some eye-welling when I realized what I had “on film”.

Zach pulls out his favorite request after asking for juice and pretzels, and I am once again relegated to the role of storyteller, a part I feel is just a wee bit too early for me to handle in my unfortunately uncaffeinated morning. I gear up for the task at hand after I’m told the cast of characters (Zach, Justin, Mommy, Daddy, and everyone from Star Wars except Jar-Jar Binks). I take a moment to think about where I want to go with this latest piece of fiction.

I have the strong feeling it will involve two brothers.

It does, and as I weave a tale of wars waged and battles lost I include two boys, both of whom possess a formidable will for what’s right, and impeccable character as well. There are choices to be made, forks in the road that require a devotion to the dark side, or to the light. Fights ensue with limbs lost.

This is a story for an almost six-year-old after all.

But amongst the challenges accepted and the rallying cries of war there are pivotal moments of character development, where the two protagonists must work together to save their aging parents (guess who they are), are required to comprehend each other in order to return the universe to those who follow the light. I highlight Justin’s strengths, his ability to notice when anything is “different”, his devotion to getting to the heart of the matter when he communicates, his affectionate soul.

I insert Zach’s innate stubbornness and facility with language, and create a plot where they both must work together to liberate their parents and save the day. I make certain that in order for my two main characters to collaborate they must appreciate each other’s gifts, and supplement each other’s deficits. In the end of course they prevail, with a relieved mom and dad showering them with praise, and a grateful universe regaling them with precious treasures.

Among the gifts is a talking light saber. I have to hold his attention while I tether those sometimes tenuous brotherly bonds.

As my fable comes to its climax I am relieved from my storytelling, and my small son begs me to pull over so I can ply him once again with juice and snacks (listening to my tales appears to make him famished). I quietly ask him if it’s okay that Justin has autism, and after a few long moments I hear a faint and slightly irritated “yes”. My son has rediscovered his Star War books, and clearly discussing neurological disorders is so yesterday.

I grin at his intense concentration, that focus he brings to all he does. I send out a request to the universe that Zach will permanently view his brother the way Justin sees him in that well-regarded triptych, that my youngest son will continue to adore his older sibling. I hope that Zach will always see the light in Justin and in himself, that effervescent force which flows from them both.

I let my mind wander back to that final photo of brotherly love, and smile.

October 21, 2012

Brotherly Love

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 12:32 pm by autismmommytherapist

It was almost an afterthought to throw the photo into Zach’s bag. A last minute request by my youngest son to have a picture of his older brother mixed in with dinosaurs, trophies, and a few likenesses of himself, which he will use this week to tell his kindergarten class all about him.

We spent time together walking around the house, picking up items and discarding them, a book here, a toy there. When I asked him if he wanted to include a photo of his parents in their pre-child days I received a polite “No thank you”, as after all the point of the project was to tell everyone about him, not the people raising him.

So when we made it to the dining room and he stopped dead in his tracks before our photo-laden buffet, I was curious as to which frame he’d choose. Out of the many possibilities, including an adorable one of him from last year’s Halloween sporting a Buzz Lightyear costume, his hand lit upon Justin’s school picture and stayed there.

“Mom, can I bring Justin to school with me?” he asked, and I admit my heart swelled with pride that he wanted to include his sibling in his speech. “Of course” I responded, then asked again if he’d like his whole family to represent, a request which generated an encore of denial. I popped the picture out of the frame and into a ziplock bag for safekeeping, and was then informed we were done collecting, and it was time for a snack.

Between the two boys and me it’s often time for a snack in this house.

I ask him what he’ll say about Justin to his classmates, and Zach just looks at me somewhat strangely and says “I’ll tell them he’s my brother”, a response which makes me smile by how obvious it is. I’m so pleased he thought to include him, because among the many other worries associated with having two kids with autism (Justin’s life-time care prospects, Zach’s ability to mainstream, the return of my sanity), I often consider the effects on Zach of having a moderately affected sibling.

His father and I make extra efforts to spend “alone time” with our youngest. We also take care to preserve the relationship they do have, one in which his we encourage Zach to interact with Justin, not to take care of him. I wonder constantly if we’re doing enough.

He seems to be okay with his brother having autism, and we talk about it frequently. Zach has asked many probing questions over the last few years, mainly about whether or not Justin will ever talk, and how did he get autism (which I’d love to be able to answer for him).

His queries are few and far between, generally resulting in him requiring food and juice afterwards. Zach seems to be taking everything in stride, but I wonder, because that is what I do. We’ve recently placed him in a sibling group for children with brothers and sisters on the spectrum, and I’ve been happy to hear that he contributes, has seemed interested in what the other kids have to say. So far it seems, so good.

But I admit, I can’t wait to hear what he’ll say about Justin to his peers.

Soon enough “All About Me Day” arrives, and a little past noon my son blows by me as he runs from his bus, eagerly sloughing off sneakers as he hurries to find his Nook. I give him his privacy in the bathroom (yes, he’s already asking for that privilege), then urge him to come to the table and eat his lunch without technology present. He slides into his chair with ease, and I turn to him as I set his plate before him, and ask him how his project went.

I get my usual “fine” in response, and try again. “Zach, what did you tell the kids about Justin?” I ask him, and hold my breath a bit as I wait. He takes his time responding, pops another piece of ham into his mouth, and says “I told them he was my big brother, and he has autism. I said I didn’t like it when he rips books. Can I have more chips?”

Like I said, food is a dominant force in this house.

I realize I’ve been holding my breath and I exhale, then reward him with a few more potato wedges. Perhaps he’s too young to articulate his thoughts on this subject. Maybe, (and I hope this isn’t true), he’s apprehensive about saying what he feels. Or perhaps, and this is my hope, having a sibling with autism, at least at this point for him, is just not that big a deal. Maybe for Zach, Justin is simply his brother, and they love each other. End of story.

Here’s one mom hoping this last scenario is right.

June 11, 2012

Pretty as a Picture

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:39 am by autismmommytherapist

It was just a simple thing really. My youngest child created a picture of nightmare-chasing robots, and he wanted to display it prominently in his brother’s room. The images were beautifully crafted (in my humble opinion), clearly rendering two fierce beings capable of protecting Justin throughout his nocturnal slumbers. Zach was adamant about where his artwork should reside, remaining stalwart in his determination even after I reminded him that Justin’s autism usually results in bare walls, devoid of paintings and photos. My smallest son simply turned to me and said “He won’t tear it down, Mommy”, and ran off to procure tape to adhere his masterpiece to the perfect spot.

Watching his unbridled enthusiasm made me hope he was right.

I followed Zach to his sibling’s room, helped him secure his art in the perfect place, one which will maximize its protective properties. I ask Zach if he wants to stay and read books from “Justin’s library”, and he politely declines, stating he’d prefer to play Transformers with me downstairs.

Oh well. I tried.

Four battles and as many vanquished Decepticons later, it’s finally time for me to collect Justin from his bus. I keep my fingers crossed that my eldest will admire his new “room accessory”, because it’s clearly important to his little brother, and would be a victory over some of the more destructive aspects of Justin’s OCD as well. Justin bounds off his vehicle and nearly bowls me over in an attempt to access the house as quickly as possible, and I follow quickly behind. I call out his verbal prompt of “shoes”, which he manages to shake off before he makes a beeline to the second floor.

Usually he follows this routine only when he requires water after a long bus ride, and today is no different. He slakes his thirst in the guest bathroom, then turns to make his way downstairs to what’s really important, that crucial afternoon snack.

I can always relate to him on that point.

He is just stretching out his hand to the banister when Zach barrels into him, and grabs his fingers to propel him back down the hallway. “Come see the robots that will save you!” yells my youngest, and at first Justin resists, clearly more compelled to satisfy his hunger than his brother’s whims. Zach prevails however, and Justin follows him dutifully to his room, where his sibling switches on the light with a dramatic “TA-DA!!!” coupled with a prominent point toward the wall hosting his talismans.

I hover behind, close enough to intervene, far enough to let some of this situation transpire naturally. Justin immediately notices his altered space, and moves forward for a closer inspection. He places his hand gently on the corner of his 8 ½ by 11 inch gift, and I tense. Then, he simply smiles.

Next, he turns around and makes a mad dash downstairs for a bagel.

“See Mommy, I was right, YOU were wrong!” says a joyful Zach, and I smile to myself and tell him he was correct, and that Justin loved his work. We make our way somewhat more slowly down the hall ourselves, and like most afternoons here, my two boys won’t really interact again. Justin will be consumed by his DVDs and whatever reading lessons I can sneak in on our computer.

His little brother will enthusiastically engage in a multitude of activities, ranging from writing a new story, to conquering Darth Vader’s stormtroopers with light sabers which never fail to smack me in a sensitive place. Their paths will not reconnect until bedtime, when Zach will attempt to snuggle a “goodnight” to Justin, and my sweet son will let him.

But that picture, rendered carefully in colored pencil points and designed to destroy any evil to come our way, will be the last thing I see as I quietly shut Justin’s door. It will be a reminder to me that I can step back a bit now. My boys are making attempts to know one another, moments born not of their mother’s manipulations, but inspired by a genuine interest in each other. It is a beautiful thing to witness.

And I look forward to watching this event recur again, and again.

May 17, 2012

Mother’s Day Bounty

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 10:13 am by autismmommytherapist

It’s Mother’s Day, or what I like to call around here “a sacred 24-hour-period of Mommy-thanking”, which as usual, will commence before dawn. Justin is particularly happy and affectionate this morning which is a wonderful thing, because I realized the night before that I’ve finally succumbed to the virus Zach just had, one which knocked him out for a week.

While I’m a bit disappointed to be out of it on this day of all days, the situation’s not tragic. My own mother is away, so there’s no meal to prepare later in the day. My kids will still give me their beautiful homemade cards and we’ll do something together as a family, because even though it’s technically “my day”, Justin still needs to get out of the house. Most importantly, the nasty bug that has claimed my body waited until after I’d concluded my shopping spree last night with my sister-in-law and niece, permitting me to have my girl-time with them AND acquire the perfect dress for my brother’s wedding.

I still have my priorities straight.

So, today will commence as most Sundays do, although my husband is graciously taking over the early morning shift because I can’t quite stop coughing, and just can’t seem to leave those warm covers. He’ll make my son breakfast and entertain him for two hours until my second child is conscious, at which point I’ll rally and get myself downstairs to help him with the controlled chaos.

Those two hours will rank up there as one of the best gifts I’ll get all day.

We won’t attempt a Mother’s Day brunch out, in part because Zach is still on the gluten-free casein-free diet which seriously restricts what he can eat, and in part because Justin will want to eat and get out of there in about half an hour, which kind of defeats the concept of a meal that’s supposed to be leisurely. We won’t be ordering in either, because I can neither smell nor taste anything at the moment, so meals prepared by someone other than me aren’t really on my agenda. No, except for my annoying cough, today will end up proceeding pretty much as any Sunday does around here, lazy, reasonably quiet, with lots of together time.

That is, except for one glorious, exceptional, “make-my-mother’s-day” moment.

I’ve written many times on this blog how important it is to me and my husband that our boys have a true connection, that each one respects the other, and hopefully finds true joy in their relationship as well. Justin and Zach do have a number of moments together, but I admit that many of them are contrived by me in an effort to foster that bond. There are games of tag around the house, and books from Justin’s early childhood that still bring a huge grin to his face, and a smile to his younger sibling’s too. Zach often tells us what Justin is “saying”, which is generally amusing, as his “communication” is frequently to Zach’s benefit.

Zach is not a kid to willingly miss any opportunity that benefits his own life.

But the key thing here is that while they do connect, almost all of their interaction is initiated by Zach, or by his parents. It’s not that Justin isn’t interested in his younger sibling, or doesn’t love him. Zach has surprised Justin at school several times for various functions, and each time his older brother’s face has absolutely radiated joy, and his excitement at Zach’s presence was palpable. They love each other in their own fashion, but to date, my firstborn has never started the proverbial “brother ball” rolling.

But today, he did. And he even gave up something he loves to do it.

I didn’t get to witness it, will have to live vicariously through my husband’s report of what transpired. I was washing breakfast dishes when in the middle of my task I heard a resounding “That was SO nice Justin, great job!”, and I abandoned my chores to rush upstairs. I took in a typical tableau- Zach sitting in the computer chair, Justin hovering happily next to him with eyes glued to the screen, and my spouse on a bench nearby monitoring the situation.

Jeff turned to me with a huge smile on his face, and said “Without any prompting, our eldest just got out of the chair, grabbed Zach’s hands, plopped him into his seat, and gave him a chance at this game.”  I smiled in return and asked him how Zach responded, and he said “he looked at Justin and said, ‘you’re a great big brother’, then sort of pushed him out of the way so he could have a better look at the computer screen.”

That’s my boy.

It sounds like such a little thing, but inwardly I’m thrilled, because I hope it won’t be a one-time event, a glitch in their usual brother-to-brother relationship. I know that sometimes Zach longs for more from Justin. My youngest asks lots of questions about what his elder sibling will be like when he grows up (ones I wish I could answer more precisely), and every few months tells me he’s built a machine that will make Justin talk and play with him.

I’d take out several mortgages just to acquire that bit of technology.

I don’t know if a moment of this magnitude will re-occur for them. So often little pieces of “typical” surface on the turbulent waters of our family’s autism, then they recede, never to be seen again. I’m not sure Zach will once more be the recipient of such a generous offer, a true act of generosity on the part of his older brother. I can wish for it though, and I will.

But no matter what, it happened once. It was their moment, but now it’s mine too. It made my Mother’s Day.

And I sincerely hope this past Sunday, that all of you moms out there had your amazing maternal moment too.

January 22, 2012

And the Answer is…

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 6:15 pm by autismmommytherapist

“Mom, why does Justin say “eeee”? Zach asks me as he colors a wooden snowflake bright red, a hue he says he chose because it’s “cheerful”. “I don’t know honey, that’s just the way your brother talks because of his autism”, I respond. I help him uncap a green marker to make the snowflake more “Christmasy”, and I think about how much I’d truly like to know the answer to that particular query. It’s been seven years, thousands of hours of speech therapy, and an equal amount of money spent on trying to elicit some consonants out of my eldest son. I’ve been a (mostly) good girl all of these years, and truly, I’m ready for someone to end the mystery for me. I look down at Zach and realize he’s ceased his artistic attempts and is looking right at me, as if I’d merely forgotten the real answer, and my response to him is imminent.

He’s turning five. The questions are starting to come.

It’s funny. So far, we’ve had elaborate discussions on what constitutes a soul, what transpires in heaven (Mommy, Daddy, and Justin are there, friendly dinosaurs are residents, and there are a lot of snacks). He’s asked me why the sky is blue (the answer for which I had to look up on the internet and now no longer recall), but he hasn’t peppered me with many questions about autism. Zach does know that it’s hard for some people with autism to talk and to make friends. He also understands that autism is the reason his big brother plays the same scene in a movie a trillion times on his DVD player, and that Zach needs to see films on our “big screen” if he wants to know the ending of anything. So far, except for loudly declaring that a few kids at POAC events have autism, it hasn’t been a huge topic of discussion.

I’m pretty sure however, that it will be soon.

Zach’s starting to really notice Justin’s behavior, how he’ll frequently seek affection from his parents (which immediately prompts Zach to do the same, no imitation issues here), but remains mostly solitary in his activities, despite our numerous attempts. He’s asked if Justin could play Monopoly with us, and seemed mildly disappointed when his brother made it clear that plastic cars and thimbles hold no interest for him. Our bowling activities have placated him a bit, afforded Zach the opportunity to cheer his brother on and hug him when he’s victorious, allowed him to feel connected to his sibling. On the rare occasion when Jeff and I have been able to get them to run around the house, Zach has thrilled to the chase, and solicited Justin’s help in conspiring against his parents. Recently there have been more opportunities for connection, for fairly “typical” sibling interaction in our house. Zach has loved them all.

But I’ve noticed that now his questions are becoming far more difficult to answer, and his requests are of a nature I can’t reasonably fulfill. Last week, it was why Justin doesn’t have playdates with his friends from school, and why he wouldn’t sing a song with him. Yesterday ended with a half-hour long discussion as to why Justin can’t sleep in his little brother’s room, with my explanation about completely different schedules (and Mommy losing her mind if they woke each other up) clearly constituting an inadequate response. He’s beginning to want more from their relationship, and he’s starting to wonder why he’s not getting it.

I personally am envisioning a great deal more chocolate in my immediate future.

So far it’s been fairly calm seas between the two of them, with the  occasional appearance of mild skirmishes over toys the only time sibling rivalry has marred the surface of their relationship. Every day, Zach still asks how long it will be before Justin gets home from school. He continues his unsolicited acts of generosity toward his elder brother, leaving him books and toys at his place at the table (ones he no longer has interest in of course). According to Zach, Justin is still his best friend.

And I just hope, as we transition into the next phase of Zach’s childhood where questions and requests will dominate our days, that this brotherly love will remain.

         

May 8, 2011

Mother’s Day Dream

Posted in Life's Little Moments tagged , , at 10:57 am by autismmommytherapist


Dear Zachary,

Today commemorates Mother’s Day, a holy holiday in our home which I’m certain your father will attend to with the proper reverence. There will be separate cards from each of my boys, lovingly etched pictures to accompany the Hallmark words, perhaps a carefully chosen gift or two to further deepen the significance of the day. A meal will be prepared to celebrate my own mother as well, and three generations will gratefully sit together under one roof to consume it. These two events will bracket the day, with the hours in between comprising, in the end, just an ordinary Sunday. All the mothers in this particular hierarchy of parenthood will feel thanked, appreciated, loved.

And yet, despite the fact that it’s “my” day, I feel I should be the one thanking you and your brother.

I’m writing this letter to you now, an act I intend to repeat over the years to come for the two of you, in the hopes that I can convey to you how much gratitude I feel for the gifts bestowed upon me by your births. Your older brother of course began this motherhood obstacle course for me eight years ago, he of the intense gaze and that elusive laugh that I so coveted and sought after in the early days of his life. He slowly shattered all my expectations of what comprises the act of parenting, as I eventually realized his colic was more than just a transient state of being, his tantrums and aversions to the typical world a semi-permanent, not temporary fixture.

Through acting as his primary therapist for well over a year I discovered a depth to my love for him I didn’t know I had, formed a resolution to surmount even our worst struggles together. Watching him strive daily to resist the siren song of perseveration, and instead attempt both to communicate and forge connections with those in the world around him who have his best interests at heart, has inspired me to the depths of my often tired soul. He has taught me the true meaning of courage, your big brother. I hope, as you continue to grow and conquer your own battles, that you will recognize his indomitable will and draw from it, adopt it for your own use.

I am confident you will.

Know that I am proud of you as well, my second son. I feel ferocious pride in the way, even at the tender age of four, you now include your brother in every aspect of your day, sharing a sing-song salutation as you greet him each morning, a kiss and heartfelt hug for him at the close of each day. Although I never expect the sole responsibility of his care to fall entirely upon your shoulders, I am certain you will continue to champion him, check in on him, love him to the fullest.

I am also so proud of how you’ve incorporated your unique abilities into your own life, transitioned from fear of the world around you to an unquenchable thirst for new activities and adventures. The tenacious way in which you regained your speech, re-connected to those you loved, and resumed acquiring those precious markers of what the universe deems typical development, has left me awed, and grateful. Your progress has been enough to reignite my desire to once again delve within the sanctity of faith.

I’ve come a long way on my motherhood journey, cycling from dread to rage, and finally to relief, as both of you were diagnosed. I found having the “letters” to apply to your differences was actually a liberation of sorts, a label that allowed me to slide more quickly into acceptance from grief. Hearing the word “autism” when applied to the two of you was devastating, yet simultaneously a profound clarification as well. For me, ultimately, it was a call to action.

I’ll be scribing these missives periodically to both of you, sweet sons, but for today, I direct my correspondence to you dear Zach. I’m quite certain both of you will test me in wholly different ways in the coming years, your brother as he enters adolescence and its accompanying angst, and ultimately reaches manhood. I will strive to continue to model patience (when possible), dispense constructive discipline, and try to cloak all of my own “behaviors” in unwavering love.

As for you, my clever, inquisitive one, I imagine our bond may be pushed to the limits during the last third of your childhood, as you embark upon your slow ascent to adult life and leave your childhood behind. I imagine you’ll have questions as to why your version of autism rendered you fully able to engage with the world at large, when you brother’s type did not. Perhaps I will have to guide your through your own cycles of sadness and rage, much as I did myself years ago. I hope that I possess the prowess to lead you to understand, or at least accept it all, at the end of your contemplations.

It is my hope that ultimately you will take comfort from my future litany of letters, will draw from my words the measure of my commitment to you and your brother, a love I am certain will transcend death. I imagine you will know that I am sorry for the sometime sadness autism brought to your lives, but am confident the struggles you faced because of it ceded you great strength. I wish that you will regard me as guide, sanctuary, and friend. I trust that you will one day understand that I loved you with every fiber of my being, that the tragic, irritating, and at times even comic aspects of having both my children on the autism spectrum only served to make me a more loving mother, and ultimately, a better person.

Last, as I close this note to you, I thank you and your brother for enriching my life and stretching me in ways I didn’t know I could endure. You remain my little loves, and always, Zach and Justin, my most important life’s work.

I love you both.

September 1, 2010

Sibling Day

Posted in Life's Little Moments tagged , , at 6:31 am by autismmommytherapist

“It’s Silly Day, Mom?” my youngest son queries me from the backseat of our SUV, and I’m almost surprised he’s put down his sippy cup long enough to ask me the question. “No hon, it’s Sibling Day” I reply, “the day where kids get to go visit their brothers and sisters at school”. I glance in the rearview mirror to see if this computes or not, and I’m gratified to see a slight smile grace Zachary’s face before I turn my attention back to the road. “We go see Justin, Mom?” he continues, and after I adjust my soul from hearing the far more grown-up “mom” appellation rather than “mommy”, I respond in the affirmative. He’s been excited by this visit for days, wanted to ride the bus with Justin that morning until I gently explained to him that brothers and sisters have to reach the school by car. He eventually bought that, and as long as he could bring his juice and a Thomas train with him I knew he’d comply. In general, copious liquids and access to Percy and James satisfy this child. Most of the time (thank God), he is fairly easy to please.

After several rounds of “Row, Row, Row your Boat”, and a completely bastardized disco version of “Twinkle, Twinkle, Little Star”, we arrive at our destination and find parking not too far from the entrance to the school. Upon exiting the vehicle we are immediately immersed in a wave of unrelentless heat, and I am forced to summon “mean mommy” as I tell my last-born son he will indeed be walking the two hundred feet to the sliding doors, for if his mother picks him up she will in fact melt. This feels like DC weather to me, and as it does not come accompanied by six thousand nearby cultural opportunities, I resent it. It’s July, and I’m already looking forward to fall.

We avoid a near stumble as we make our way down the empty bus lane to the school, and gratefully achieve our destination as the glass doors close behind us, enveloping us in a welcome blanket of chilled air. I manage to sign in with one hand while the other grasps the back of Zachary’s t-shirt, keeping him from investigating several nearby wheelchairs which have caught his eye. Within moments one of the school’s administrators has come to usher us into the cafeteria to wait for Justin’s teacher, and miraculously I am able to keep his sibling from activating one of the chairs and taking it for a spin. This child is nothing if not curious.

The wait is brief, but it affords me the opportunity to check out some of the parents and siblings as we sit. One or two make eye contact and smile, some are entrenched in conversations with their attending children. All of them look tired. Fatigued parents may be the one commonality that transcends all differences across the spectrum (and other children with a disability as well).

Soon we are summoned by Justin’s gracious teacher, and I grip Zach’s hand tightly as we make our way down the brightly lit hallway to see my eldest in his new environment. There is only one other parent with us at the moment, and I wave her and her daughter in before us so I can give Zach his instructions one more time. “Run up to Justin, say, ‘hi’, and give him a big squeeze”, which is the McCafferty euphemism for a gigantic hug. He hesitates as we cross the threshold into the classroom, and I watch him take it all in, and orient himself.

Most of the students are congregated in the front of the room before a Smartboard, with the configuration of their chairs forming a crescent shape, their one-to-one paras seated behind them. Justin is so enthralled by what is transpiring on the big-screen technology before him that he doesn’t even register the presence of visitors, so I have a brief opportunity to observe him. Zach makes a break for it, ripping his hand from mine, feet tumbling one after the other as he heads for his target. Moments later he is there, runs in front of the students with complete abandon, throws himself on his brother’s lap, and screams “HI JUSTIN!” loudly enough that I’m certain the entire facility knows he’s in residence.

Then, the miracle occurs.

I regard my boys from across the room, and see Justin’s unbridled response, starting with disbelief in his eyes and working its way to a huge grin that encompasses his entire face. I count, one one thousand, two one thousand, three one thousand, and watch my eldest son completely revel in the fact that his younger sibling is strewn across his torso. In those few, sacred moments, it is apparent how much he loves his little brother, for he it takes him three entire seconds to even search the room for me, to investigate who else has accompanied Zach. This is their time, and for this brief period Justin is simply happy to see his sibling, no other presence is required. Zach quickly tires of embracing his brother and heads toward a tent set up in the corner of the room, and I sprint sideways to circumvent what I’m certain will result in the deflated camping apparatus before Sibling Day has officially even started. After all, I’ve schlepped here, I want them both to get what they can out of it.

But the truth is, for me, I’ve already had my celebration, had my gift bestowed upon me, unanticipated, yet eagerly accepted. I’ve born witness to proof of love, those precious seconds supporting my belief that Justin, indeed, truly has feelings for Zach, even though he can’t communicate them in any traditional manner. One, two, three, a triumvirate of evidence, sanctifying my hopes, realizing my dreams.

And I know, that no matter what else transpires on Sibling Day, that for this mother at least, it has been a success.

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