July 25, 2016

Whatever We Can

Posted in My Take on Autism tagged , , , at 10:13 am by autismmommytherapist

Zach Arrives and Justin 4 089

I hold you as you sob, my arms wrapped tightly around your torso, as behind me your father holds your hands so you won’t pinch or scratch me in your grief. Tears are welling up in my eyes with you, because I know what you so desperately want to do, and I can’t give in. You see, your OCD or your autism (I can’t tell you how much I don’t care which one it is anymore) is telling you to throw your brother’s play station controllers behind our speakers which will undoubtedly break them, which will cause holy hell to be unleashed in our home.

Your brother has a deep attachment to his play station.

You cry uncontrollably, your grief palpable, and I know that for you, in this moment, it just feels so wrong for them to be sitting out in plain sight. I know we could hide them for a while, but honestly you find everything, and your father and I feel it’s best if we stand firm, and just say no.

Your father holds your hands with one of his and manages to find the remote with the other and put one of your favorite Baby Einstein’s on tv, and I feel the tension slip from your body. With a last hiccup I see your radiant smile break through your tears, your eyes meeting mine as you share your happiness at witnessing this old fave, controllers (for the moment) forgotten.

It will take me longer to forget.

We’re trying Justin, please know that. Your OCD and/or the more perseverative aspects of your autism have been ramped up considerably for the past year-and-a-half, and neither the behavioral plans nor the medications we’ve tried have really helped. We’re giving you something new now that will take weeks before we know if we’ve hit the jackpot or not (here’s hoping), because your obsession with arranging things not only keeps you from more productive pursuits, but wreaks havoc in our house and, worst of all, frustrates you to tears.

Sometimes Mommy joins you there.

Part of the problem, son, is that Mommy is a “future girl”, and when I look ahead at yours and know one day you will no longer live with us I anticipate that this behavior will not be looked upon with delight in your group home when you’re fifty. The people who will one day care for you will not be paid enough to have their entire closets rearranged, nor will they want to take twenty minutes to get you out of the house as you try desperately to angle a shoe just so.

I just want to help you.

The truth is when you’re in these “spells” as I’ve dubbed them I look in your eyes and the boy I know and love is no longer there, the bleak stare of obsession replacing the kindness and calm you radiate at all other times. This is so different from the stimming you do on the computer or on your DVD player, an activity which gives you joy and I believe if anything alleviates whatever frustrations you’ve been having.

This is just different. And I’ve been told it’s one of the hardest things to help in any autistic individual.

And frankly, that just sucks.

In the meantime we’ll hold out hope for this new med, and try to distract you with other pursuits whenever we can. We will prevent you from inadvertently hurting yourself or destroying things. We will hold you when you are overwhelmed and frustrated.

We will be there for your tears.

As long as we can, we will always be there.

As long as we can we will love you through this, and everything else that comes our way.

 

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July 11, 2016

Find Your Calm

Posted in Life's Little Moments, My Take on Autism tagged , , at 9:53 am by autismmommytherapist

Autumn 08 066

A few weeks ago I wrote about my week in paradise (again, don’t hate me, had not been away for three years) and my desire to “keep my calm” upon my return, knowing that within days my eldest son who is severely autistic would be home for the better part of three weeks.

I tried. Sometimes I even succeeded.

I’ve made a conscious decision since our return to try to take things more as they come, which is not easy for a girl who’s a planner extraordinaire, always thinking two steps ahead and not necessarily living in the moment. I’m not complaining, for this trait served me well as a teacher and has also served me well as the mom of two special needs kids, so I’m not hanging up my perseveration card just yet.

I’m just thinking I don’t need to wear it quite as often as I do.

The last three weeks with Justin home had their ups and downs, but several things happened that were huge milestones chez McCafferty. I screwed up my courage and took both boys to the beach by myself (on 4th of July no less, barely missing getting stuck watching the Ocean Grove parade which would not have gone over well with my eldest). Zach made it through acting camp beautifully, no curbs on impulsivity needed for my dragon king. My husband and I finally had enough perspective to see how really bad Justin’s OCD has gotten in the last few months, and have decided to take the plunge and begin a new medication we’ve been resisting trying because it seems, well, so damn serious.

But the truth is I’m the big picture girl in this relationship, and when I think of where Justin might be living down the road I realized nobody is going to put up with him reorganizing their closet (I use the term reorganizing loosely here) nor are they going to want every sticky note they’ve written “vital information” on to end up in the trash.

Okay, that last one might just be my issue.

I think what I realized on the sands of St. Lucia was that I’m often so stuck in the myriad details of raising two kids on the spectrum that I’m unable to look beyond where we are now, and subsequently to work backwards and take the steps necessary to where I want to be. Sometimes my stress level with Justin (and my husband’s too) is through the roof, and we lose sight of the big picture by simply immersing ourselves in the day-to-day. Stress literally decimates my ability to think “down the road,” and I’ve got to do whatever it takes to reduce that in my life. Even if that means that sometimes when someone asks me to do something I just say no.

Imagine, what a concept.

So I’ve come back determined to keep my calm at any cost, so I can make those big and small decisions with a clear head. Keeping my calm includes exercise, sleep, yoga (and of course my faves wine and chocolate) and times when I’m not actively anyone’s wife or mother. Periods where I’m just me, giving myself the chance to recharge.

Fortunately, I like hanging out with myself. Seems I’m still good company.

Whether you’re just starting your autism journey or are staring down the barrel of your autistic kid’s teen years, especially if you’re the primary caregiver, make that time for yourself. It’s crucial physically, emotionally, and will literally save your sanity. If people have offered to watch your kid for you take them up on it. Hubby offering you a night out- go.

Hell, you’re probably going to have to ask for it. As Nike says, just do it.

Carve that space and time for yourself. Make it happen no matter what.

Do whatever it takes to find your calm.

 

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July 5, 2016

Where He Is

Posted in Life's Little Moments, My Take on Autism tagged , , at 10:24 am by autismmommytherapist

Zach in a Bath 014

We sway in slight staccato, my boy’s arms wrapped tightly around my waist, his left cheek flush with my right. We hold each other close as we do every morning, our sacred ritual, our own unique way of welcoming the day.

Soon we must move apart as we walk through our morning routine, but for these few minutes the world is just us, no demands, no noise, no time table. I breathe him in, and think about how much I thought I knew about autism thirteen years ago was (at least in regards to my boy,) wrong.

I recall the websites lamenting lack of eye contact, and smile as I think about the gourgeous gaze he bestows on his mom, dad, brother and anyone in his inner circle.

I remember how the internet implied he’d never be affectionate, and chuckle as his arms wrap even tighter around my torso.

I think back to dire warnings of constant meltdowns for life, and while we dwelled there for a while, now my boy greets each day with unmitigated joy.

I recall that nowhere on the website did anyone mention how rewarding it would be to watch him achieve even minor milestones, how meeting him where he is, not where any books or child specialists think he should be, is a reward in itself.

He pulls back to bestow a kiss upon me delivered with his signature grin, his way of letting me know all is right with his world. We start the slow shuffle to begin the day, and for the thousandth time I am grateful for this boy, his laughter, his life, his love.

Grateful for the ability to meet him where he is.

 

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June 28, 2016

Make New Friends

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:08 am by autismmommytherapist

Easter Scouts Sci 16 077

This past weekend I had the great fortune to have dinner with a couple of my “autism mommy friends,” an evening out which not only provided me with great food and conversation but let me escape doing the dishes for one night. I really like and respect these two women, whom between them have three adult autistic children on the more severe end of the spectrum. We of course ended up talking about our kids and autism as we usually do when we can sneak out of our houses, and while basking in the glow of super fun martinis caught each other up on our lives, laughed, and bonded.

 And I realized as a mother of a severely autistic son and a high-functioning son (although I dislike both those terms), it’s important I have friends in both camps.

I also have friends with kids on the milder end of the spectrum. Some of them are women I’ve known from Zach’s pre-school days, women I really liked, and worked hard to develop relationships with them. These friendships have afforded Zach the opportunity for playdates as well, and I’ve also cultivated these friendships for that reason, as our collective ability to get together these days is always extremely limited.

I find my conversations with these two disparate groups bear almost no commonality.

When I discuss Zach, I talk about the merits of different schools, whether or not we should try baseball, which teachers I’ve heard are good with our kids in the approaching grades.

When I talk about Justin I usually am giving an “OCD update” and an “outing update,” and when things get serious, talking about those post-21 days and what I’m hoping his life will look like.

I will share with you I’m still working on that one.

I need moms to talk to in both camps, not only because my sons’ life trajectories are so different, but because I care equally about the decisions we have to make about their futures, some not so simple, some easier than others. Autism can be so isolating, particularly in the early days. I’ve found it an invaluable help to have other women to bounce ideas off of, to be able to say my more severe kid hasn’t slept well in four days and have them know immediately my fear is that this new change is permanent (and have them talk me down off the ledge). I need a friend who understands that when a teacher goes out on maternity leave it’s a big deal for my littlest son (and know she’ll talk me down off of that ledge too).

I just need people who get it.

So if you’re just starting out on this autism journey, I hate to say it but I’m going to add one more thing to the “get Early Intervention/deal with insurance/make doctor appointments/figure out their school program/try to sleep once in a while” list that invariable comes hand-in-hand with a diagnosis, no matter what your child’s age. Some people I know have found these women in support groups, or in the waiting rooms of private supplemental therapy offices. Many have made friends with moms they’ve met through their kid’s school, or by volunteering for a local autism organization. I personally made friends with all my kids’ Early Intervention therapists (hell, they were at my house all the time, I saw them more than my own husband), several of whom had kids on the spectrum who were older, and helped guide my way.

It doesn’t matter where you find them. Just find some good ones, and hold on for dear life.

Not only will these friendships save your sanity, but from my friends who’ve been around the block a bit with their kids who are older than mine, I’ve gotten invaluable information regarding our school system, available therapies, medications, and which local doctors are worth the trip and which aren’t worth the bother.

Hell, I’d nurture those friendships just for that last bit of info.

So when your life has settled down a bit and you can think of taking on one more task (and know I so get the enormity of that), make new friends. And as I paraphrase from what I used to say in Girl Scouts, keep the old, but make the new.

The new are gold for sure.

 

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June 21, 2016

Rewind

Posted in Life's Little Moments, My Take on Autism tagged , , , at 4:39 pm by autismmommytherapist

Justin BD 2016 Scouts 044

The laugh roars up from his belly, a hearty chuckle we haven’t heard in weeks.  My son is sitting on my lap almost doubled over from the hilarity of watching my husband wear his bedsheet like a hairnet and prance around the room (never a dull moment chez McCafferty.) When his father places it around his mid-section like a skirt, tears actually adorn Justin’s face as he watches in total concentration.  He is engaged, amused, and completely captivated by the scenario unfurling in front of him.

We haven’t seen him this present in weeks.  It is a joy.

For the past year or so Justin (and his family) have been struggling with his secondary diagnosis of OCD.  Since there are no blood tests for autism and OCD it may seem like splitting hairs as to what is causing his incredibly compulsive behavior, and in the end it really doesn’t matter.  What does matter is that his obsessions with arranging, moving and angling objects always culminates in his being miserable with his organizing.  As someone very bright once said “you are only as happy as your least happy child,” and unfortunately as Justin has adopted this behavior, he has become our least happy child quite often.

And I want so badly to help him.

We’re going both the behavioral and the medical route.  The former has had some limited success, mostly due to the difficulty of implementing the procedures while trying to cook dinner/help Zach with homework/answer a text etc. The latter plan has not worked well so far.  We tried a medication whose side effects were supposed to wear off after several weeks, and simply didn’t.  We weaned him off when my gut told me these changes were not going to abate and immediately saw the return of our not-so-sleepy child, for which I am grateful.

For once, I don’t really have a plan B.  And for this A-type mama, that’s hard.

There are other meds to try, all of which take weeks to fully implement, and all of which carry with them the potential for side effects.  If I’m being perfectly honest I would consider just skipping meds altogether and dealing with the behavior which fortunately is not present his entire day, but I always come back up against two things- his unhappiness while in the throes of his OCD moment, and the fact that this will not be considered desirable behavior one day when he no longer lives with us.

And yes, that day is far, far away, but as my friends with adult autistic children keep reminding me, like winter, it’s coming.

Since Justin will be changing teachers and classrooms in just a few short weeks we’re going to table the “experimentation” for now, see how spring break goes, and hope that the lessoning of this behavior we’ve seen in the past few days will stick. Perhaps we’ll revisit the possibility of a new medication down the road.

It’s so hard for us to watch him go through this.

I can’t imagine how hard it is for him to actually live it.

As much as I write about the positive things this family had achieved with two children on the spectrum, I think it’s important to write about the hard things too.  As I’ve written before usually the difficulties go in cycles, and I’ve gotten better at reminding myself of this as the years have passed. My fingers are crossed that this will pass, or lessen, too.

And if not, I’m going to remind myself of an impromptu headdress dance to get us all through.

 

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June 13, 2016

Just Be

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

Summer 06 008

I just returned from a week in paradise. Please don’t hate me.

Last week my husband and I spent a week in St. Lucia to celebrate our 20th wedding anniversary. There were the usual ups and downs of any trip- a delayed entry to the island, being flooded out of our room the second night, a day lost to torrential downpour.

And none of it mattered, because we were together, childless, and given the priceless gift of relaxation.

I’m very fortunate that my mom is able to watch the boys for that length of time, and grateful we were able to sneak away. It’s been years since we’ve had the opportunity, and I could tell we really needed it. Of course being me I had to spend part of my week thinking about things (even being on a lush tropical island doesn’t preclude me from thought.) I subsequently realized a few things of importance while chilling out on my lounge chair. First, I acknowledged that in the past it would take me two days to truly relax, and this trip I got into the groove before the door even closed on our way to the airport. This is entirely due to the fact that as they’ve aged the boys have in general gotten easier.

Yet another thing to be grateful for, along with nice men bringing me pretty drinks on the beach.

Second, and most important, no matter what Justin’s living arrangements are after high school, I have to figure out a way for Jeff and I to have the opportunity to simply be. Whether he continues to live with us, or resides in a group home or shared living experience, Jeff and I will need a break.

We all need a break.

As I’ve mentioned before Justin is only thirteen, so we’re a presidential term away from serious decision-making- where will we live after both boys graduate, where will Justin reside, should he work or have a life of leisure. I don’t know what we’ll do yet, but for once I stopped perseverating about everything and let go, allowing the prevailing island attitude of “just be happy” wash over me without the tidal wave of worry that often accompanies most of the big decisions I encounter.

And I am determined to retain this attitude no matter what comes next.

I won’t blame autism for making me a worrier- I’m a fourth generation perseverator, and as my mom says, I come by it honestly. When not engaged completely in having fun I’ve been known to get a good worry on, a condition which was exacerbated when Justin turned six months old and started spinning everything in sight.

Spinning is not included in any copy of the “What to Expect Your First Year” book.

But over the last few years as things have started to ease a bit, and in some cases a lot with both boys, I’ve been able to lay down that mantle of anxiety and be more present, enjoy what’s in front of me, and not think about the future so much.

Trust me, for me this is a major milestone.

And that’s the key to everything. The truth is worrying hasn’t made anything along the way any better- in fact it’s made some things worse. The fact is I have very little control over anything, and while that used to terrify me, I’m coming to see this as a benefit. I can only do my best, things will play out as they will.

As long as chocolate and wine continue to be in my future, things will be okay.

So as life hits me, and it will, I have to remember to go to my new happy place. It’s a particular lounge chair with a stunning view, a prevailing wind just strong enough to cool me down, and the ability to relax and take things as they come.

Here’s hoping it sticks.

 

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May 30, 2016

Get Out

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , at 4:19 pm by autismmommytherapist

Justin BD 2016 Scouts 028

Recently I spent twenty-four glorious hours in DC, my former stomping grounds of fifteen years. I ate Indian food, and spent hours chatting with my bestie. I got a blister walking into Georgetown, and waved to President Obama through the White House fence at night. My friend and I abandoned our kids and husbands for one fabulous weekend, and we plan to make it an annual event.

And Jeff managed an entire day-and-a-half on a weekend with both kids without help.

I’ll say it again- he managed for a day-and-a-half on a weekend without help.

Many of you who don’t know my husband may be doubting the competency of an individual who can’t watch a teen-ager and a nine-year-old for thirty hours without assistance, but my boys both have autism (my eldest is severe), and that can make things difficult sometimes. Both Jeff and I have found it challenging (sometimes that’s an understatement) to make it through an hour much less an entire day with the boys, and I’m a former educator who managed classrooms of thirty children with relative ease. There were entire years if one of us had something to do in the evening (usually it was a PTA meeting, nothing too exciting unfortunately) we’d literally have to have a sitter help with the bedtime routine, as we didn’t feel it was safe for one kid to be unattended while we put his sibling down.

As you can imagine, we didn’t get out much.

But I would say in the last two to three years there’s been a subtle shift toward independence in our household, with both boys maturing, and dare I say it, becoming much easier to manage. Three years ago I would have been able to pull off two week days in the nation’s capitol, but never a weekend, much less both weekend days. Three years ago I wouldn’t even have asked, knowing most likely complete havoc would have reigned chez McCafferty, and my little excursion to DC would have died an untimely death.

To see this one particular friend who’s flying in for our “event” we now need to see each other on a weekend, and I feel confident we can make this happen annually.

And I cannot tell you how utterly liberating this realization is to me.

I wrote this today for any parents of autistic children (or hell, any children) who may feel “stuck,” who are watching the parameters of their lives lessen, who feel the walls closing in on them. I can’t promise you it will get better, because everyone’s definition of “better” is different, and of course I don’t know your child or your family.

I will never make promises on this blog that I can’t keep.

But I will say this. You feel like you still want a life? Don’t give up. You need a night out with your hubby but you’re afraid to leave your kid with a sitter? Find someone you trust, work up to an evening out, and do it. I know most of us autistic families aren’t exactly rolling in extra funds, but one of the best ways you can be the best parent to your child is to take care of yourself.

I’ll say it again. If you want to be the best possible parent to your child you have to take care of yourself.

And that includes having fun.

So do whatever it takes, take up that nice neighbor on her offer to babysit, and go. Enjoy yourself. Have a drink (or two.) Eat too much. Put your child on the back burner for an hour or two and remember who you were before children came into your life. Recapture how much fun you used to be.

No matter what, just get out.

 

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May 23, 2016

Spinning

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:51 am by autismmommytherapist

Justin BD 2016 Scouts 003

My head is spinning.

I’d like to tell you it’s for a fun reason, like when I used to be able to stay out late in my glory days (I remember them fondly). To tell you the truth my brain is literally pulsing with information, ideas, and choices.

If I’m honest, it’s mostly the choices throwing me for a loop.

I just finished reading Susan Senator’s “Autism Adulthood,” and while I’m contemplating the enormous amount of information within her tome (so much of it positive I’m happy to say), I’m also coming to terms with the fact that next week I’m the mother of a teenager.

Of course, that’s a sobering thought all by itself. Couple that with being the mom of a severely disabled teenager who will need lifetime care, and my chocolate stash is far from being safe.

Justin’s adulthood is creeping up on me, and believe it or not I feel blindsided as just yesterday we were conquering sleep issues and potty training, and it seems incomprehensible to me that he’s almost thirteen. Yes, he’s got eight more years of school before he’s in the real world, and officially “transition” and all it encompasses doesn’t start until he’s twenty-one, but his adult life is coming.

Like winter, it’s coming.

I would love to tell you I have a plan, although to be honest, my motherhood plans have more often than not deferred to “plan B” over the past decade. It’s not as if my husband and I haven’t been faced with big choices since our eldest’s diagnosis. One of our first dilemmas involved breaking into our savings to shell out four figures a month for our son’s ABA program which wasn’t covered at the time in Virginia, a decision we continue to be grateful we made. When we were faced with the fact that our school district’s autism program was good but would never provide him the one-on-one aide we felt he desperately needed for his academics, we made the decision to leave DC and relocate to Jersey which we’ve never regretted either (although we still miss our nation’s capitol to this day.)

We’ve known when to fire therapists, and when to try to keep people in our retinue at all costs. There’ve been med choices and school choices and “do we try this therapy even though it’s not covered” choices (oh my!), but I have to say most of the time Jeff and I knew what to do. Very rarely have we looked back and wished we’d taken the road less traveled.

And yet when it comes to Justin’s living/day-time arrangements post-21, I am literally in a quandary that even dark chocolate doesn’t seem to help.

I will preface what I’m about to say with the fact that eight years out I certainly don’t know what my options will be, and since the adult autism landscape seems to improve at least a bit every year I’m hopeful I will actually have choices in 2024, but we’ll see. Again, even my best-laid plans won’t come to fruition if there aren’t good programs and residential services, and equally importantly, openings.

But even if I one day have a smorgasbord of options (yes, I relate everything to food) at least at this point I’m just not sure what will be best for our son, and what’s best for us.

I’ve had the good fortune over the last few years to watch friends and acquaintances create post-twenty-one lives for their adult children, and I’ve seen all different scenarios come to life. One family I know has kept both their children home and have all-day care almost seven days a week, which enables my friend to work and have a modicum of freedom in her life. I’ve seen another friend place their child in a residential setting where he is finishing his schooling and absolutely thriving after having made a wonderful transition, seeing his parents frequently and seemingly loving his life.

One thing I’ve learned for sure with autism- it’s important to keep your mind open.

I know there will be immeasurable growth with Justin over the next eight years. He is a completely different child than he was at five, spends most of his days joyful, is very close to my husband and me. Honestly, except for his OCD moments and his frequent desire to not stay anywhere outside of our home for more than fifty-three minutes he is delightful. As the years have passed we’ve watched our lives grow easier, our ability to make our own choices grow, and his happiness with his life increase.

Amen to that.

And maybe I should table all this contemplation for a few years, but it’s not in my nature to do so, so here I am. If I’m really honest it’s the decades he’s here without me that are the most painful, and in truth I’ve shelved thinking about them in part because they’re not here yet, and in part because they haven’t invented that damn aging pill yet that lets me get to 110 with all (or most) of my faculties.

Here’s hoping.

So most of the time I choose to focus on the years I’ll still be here, guiding his life, hopefully providing a plan for him where he is as happy as he is now with school and living with us.

And here’s where I get stuck, because I’m not sure if what’s best for Justin is what’s best for us.

Jeff and I are both fiercely independent people. Honestly, one of the hardest parts of parenting for us was not the sleep deprivation (although that sucked too) but the loss of freedom one eight pounds of glory bundle presented us with thirteen years ago. When I think of retirement I imagine travel, and having those stay-in-bed days I lived for back in my youth. I can’t imagine worrying if my babysitter will bail when I want to go see colleges with my younger son, or go to my niece’s wedding.

I can’t imagine one day just not being able to do whatever the hell I want again. I really liked those days.

But as I think of this scenario I look at my boy, and I know people will say I shouldn’t speak for him, but I can’t ask him this, so I just have to guess. I know in my heart he’d want to stay with us forever, would be perfectly happy to go to his school until he was an octogenarian, loves the routine he craves that we’ve provided for him. He will not be a fan of day programs, and since Great Adventure isn’t open every day of the year I see long stretches of “sameness,” of a lack of stimulation and a lack of just something to damn do that I can’t figure out how I’ll provide for him.

Just in case you think we don’t think out of the box we’ve contemplated Hawaii which supposedly has fabulous adult services. Justin could spend his forty-three minutes at the beach and ride his horses daily, and Jeff and I could live in paradise.

I figure we’d be very popular with friends and family.

The truth is I just don’t know what’s best for all of us. I struggle, because I know that by potentially putting him in different settings the people who care for him won’t always know what he needs the way his mom and dad do, but I also know he will have to deal with that eventuality someday.

So when is it best to start?

Will I know what to do?

Will my expectations and hopes match my options?

Will Justin approve?

Wherever he is, will he be loved at least a little?

And as I pop that last allotted chocolate into my mouth, my head is still spinning.

 

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May 16, 2016

Growing Up

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:28 am by autismmommytherapist

Justin BD 2016 Scouts 044

This weekend a momentous event occurred, not one with trumpets and flashing lights, but momentous all the same.

The truth is, if I hadn’t been paying attention, I would have missed it.

My beautiful boy turned thirteen last week, and as usual we had a zillion parties for him (okay, three), including his family party on Saturday. I will share with you that although we’ve tried, in the past the boys’ birthday parties have not always been the joyous events I conjured up in my mind years prior to giving birth (then again, most of our moments with them do not exactly match what I conjured up before their births).

There was the party where despite giving Justin a “big brother gift” he still wanted to open all of Zach’s presents (and trust me, not one of them was enticing to him).

There was the party where my boy had an epic meltdown for a reason we still can’t discern today, and we had to carry him protesting to his room (that quieted the house). Amidst our struggles there was always joy (I love birthdays so much there always has to be at least one moment), but often Jeff and I were left exhausted at the end of a celebration, faced with at least one unhappy child and a mountain of dirty plates that looked as if it would never go away (hell, who’s a fan of dirty dishes anyway?) More often than not we were mostly relieved our little birthday parties were over, knowing we’d have a breather until next year.

This past weekend was different. For the first time there was not one single crisis, no pouting, no tears. Both Jeff and I actually talked to our relatives, ate too many appetizers, and had an amazing time.

But the big moment, the one I actually noticed while simultaneously talking to people/eating too much/remembering to get my camera was when I told Justin it was time to open presents, and he came into a room laden with gifts. This year, he just walked over to a chair, sat down, and waited to be presented with his stash.

He was so grown up he literally took my breath away.

I’m trying so hard to recognize these moments, to tuck them away for if/when times get difficult again, to bring them out and revel in them even when things are good. If two years ago someone had told me my son would be patient (and happy!) while opening his birthday presents I would have laughed. If someone had told me eight years ago my son would be potty trained I would have laughed even harder (and ate some more chocolate.) Going back even farther, if someone had told me I’d once again sleep through the night (or what passes for sleeping through the night for an almost fifty-year-old woman) I would have yawned, then thrown my arms around said person in a primal hug.

There’s no snark where sleep is concerned.

The truth is, I keep hearing about the “post-21 cliff” and the “terrible teens,” but honestly, things just keep getting easier in our home. My eldest son has truly grown into his own skin, surmounted many of his sensory and communication issues, learned to soak in and enjoy the world around him. He is a predominantly joyous, peaceful child.

This is not to say we don’t have our moments. The OCD is still a struggle, and when we don’t understand him confusion and frustration reign for all.

But I will honestly tell you those moments are now few and far between, and we’ve created an ever-strengthening co-existence in which my boy is happy, and I feel sane, and whole.

It’s getting better, and it’s not just chez McCafferty. I’ve seen this peacefulness occur in many of my friends’ households, friends whose children presented staggering challenges mere years ago.

Things are getting better. And I’m so grateful I feel we’re really enjoying our lives, not going through the motions of just getting through the day.

And for me, that’s better than trumpets and flashing lights any day.

 

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May 9, 2016

Birthday Boy

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:31 am by autismmommytherapist

Justin's First Digital Pics 056

This week my boy turns thirteen.  He will be ushered into his teenaged years, that period which is supposed to be so difficult, so devoid of communication, so trying to one’s soul.  Here’s a secret though, shared between you and me.

I actually think we had his teenaged years when he was a toddler.  At least that’s what I’m hoping, because Mommy is a lot more tired now than she was a dozen years ago.

Justin became a “tween” two years ago, and I admit part of me was waiting for that other shoe to fall, for his aggression to return. I waited for his strong will to assert itself even more than before, for us to struggle to communicate with one another.  What I found however was except for when his OCD takes over, for the most part things have gotten so much easier.  The boy “who’d never sleep” runs to his bed each night.  We now last through entire movies at a theater, and even make it over an hour at the beach (I admit, it’s work, but we make it). When we travel to relatives’ houses he’ll do the “work” we bring along for him, and we’re usually good for three or so hours at a party.  He will amuse himself for long periods of time at home, either on his DVD player, the computer, or watching his favorite Baby Einstein videos on tv.

The truth is we’re not on 24/7 surveillance anymore.  And it is completely, utterly liberating.

So much has changed with him from the days where insomnia reigned, eating was for sissies, and my arms and legs bore those bluish/greenish/purplish patches on a frequent basis.  My boy has matured, has come into his own.

Echoes of his former self still exist.  He still can’t go for more than an hour without a hug or kiss.  He still loves some of the games of his “youth,” yet adores it when my husband sneaks up on him and tickles his tummy. He still revels in my singing his baby song to him each night.

Remnants of his past remain, as when he gets frustrated with his stupid parents who can’t figure out what he wants.  But with his burgeoning communication skills on his iPad these instances are much fewer and far between, and most of the time, that sweet boy I held curled like a comma in my arms still resides.

I love that sweet boy.

This week and next we will celebrate you (Mommy extends birthdays as long as humanly possible), and there is so much to be proud of, so much for us to rejoice in on your special day(s).

We celebrate how hard you work at school, how your perserverance has inspired so many around you.

We celebrate your ever-increasing vocabulary, because it eases your frustration and is always a thrill to hear.

We celebrate your tenacity when acquiring a new skill, how you won’t give up until you’ve mastered it.

We celebrate your abundant affection, which you bestow upon everyone in your posse.

We celebrate your intelligence, and the doors it’s opened to enrich your world.

Most of all we celebrate your unbridled joy in most of your moments, something I never thought I’d witness years ago.

Happiest of birthdays to my boy, we love you so much!

For more on my family visit my blog at autismmommytherapist.wordpress.com

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