May 14, 2018

Happy Birthday Boy

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:44 am by autismmommytherapist

Last week you turned fifteen. It happened to be field day at your school, and your smile when you saw me waiting for you to perform was magnificent.

That smile carries me many days.

I usually have a variety of emotions on your birthday. I always take time to remember the first moment I heard you cry and held you in my arms- my firstborn, bright with promise. It took about three years and a lot of doctors to get you here, and your dad and I were beyond ecstatic. Your arrival made us a family.

It launched me into the role I was born into, if you believe in such a thing.

The reason I’m ambivalent on your birthday has nothing to do with your label, or even the dreams I had for you when I was still hosting you. I’m mostly past feeling sad that you will never go to college, marry, or enjoy the trappings of a more “conventional” life, because in my mother’s heart I know you don’t miss these things. You are truly happy with your DVDs, your YouTube videos and your hits of Baby Einstein. When not in the throes of a catatonia episode you are blissfully happy. It is more than enough.

It is almost everything.

No, I’m not ambivalent on your birthdays because of you “now.” I’m ambivalent because of your future. You see birthday boy, your mom reads a lot and talks to many people about what’s coming down the pike as you enter your transition years.

By the way just yesterday you were snuggled into a perfect fit in my arms, so how did this happen?

Some people call post-21 the cliff (or the abyss, it depends who you talk to).

Some say they’ve been able to create fulfilling lives for their adult children.

I want you to know with every inch of my soul I’m shooting for the latter.

I also want you to know that last week I did something different- I pushed that ambivalence down, lived in the moment (!) and just reveled in who you are, did not imagine who you will be.

I’m very proud of myself.

You’re strong, mercurial, funny, kind, smart and abundantly affectionate.

Your hugs are the best thing in the universe.

I love you with every core of my being, and I will fight for you with my last breath.

You are my heart.

Happy birthday to my not-so-much–a-boy anymore.

I love you.

 

Follow me on Facebook at Autism Mommy-Therapist

Advertisements

February 13, 2018

Love

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 12:13 pm by autismmommytherapist

I love you, my two littlest loves.

To my eldest, I love you for your courage, your kindness for your affectionate nature.

I love you even for your stubbornness, your needs that must be met, am grateful for your myriad ways of expressing them.

I love you for your passion for horses, the gentle way you rub your host’s nose after each session, how you allow your ride to nuzzle you and share his love of you as well.

I love you for your laugh, that rare sound that stops an entire household in mid-action to come running to see what has summoned such joy from an often serious child.

 I love you for your need for hugs from me, morning and night, and that sacred time we spend each day strengthening our connection to one another.

I love that you made me a mom.

To my youngest, I love you for your courage, your sense of right and wrong, your tenacity of spirit.

I love how you fight for those you love, never retreating from taking care of your own.

I love how you love little kids, even when I promise you your dream of a younger sibling is really quite impossible.

I love your jokes, but even more I love the joy you receive from telling them.

I love even your millionth question, because it illuminates your radiant mind (which often sends me running to Google).

I love how you look out for your big brother.

I love you, my littlest loves.

Happy Valentines Day!

 

Follow me on Facebook at Autism Mommy-Therapist

December 8, 2017

Our Bond

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:29 am by autismmommytherapist

He runs into the house from his school bus and stops dead in his tracks as he witnesses the magic that is my living room’s winter wonderland. Every inch is hosting a light, a singing plush toy, or an animated Christmas icon, and I know his mile-wide smile is for the tradition of this spectacle, but also it’s also comfort as he engages in a routine that happens every year.

And oh, what a routine it is.

He throws off his sneakers with glee, rips off his coat, and heads, right to our “skatey pond” comfortably ensconced on a tiny table brought out every year just to be its host. He switches it on with joy as my younger son and I look on, all of us listening to the familiar refrain of “Deck the Halls” as my eldest rocks gently back and forth.

His next move stops my heart.

For years this has been a one-man-show with a few brief moments of interaction with me. This year he walks over, grasps my hand, then takes his brother’s.

He has never once initiated this connection.

The three of us form a tight circle, an unbreakable bond as we share in his joy. He gifts us all with his gaze, beaming at our shared love of holiday classics, reveling in the touch of two of the people he loves most in his life.

It is, simply, magic.

Once again I am reminded that to truly connect with my son with severe autism I must share in what delights him, not what I think should delight him. In his toddler years it was water running from a faucet, his pre-school years repetitions of his favorite Eric Carle books until I had them memorized by heart. His elementary years I spent watching him replay scenes over and over on his DVD player, smiling at me in his joy, waiting for my smile in return. Over the years I have learned to immerse myself in his world, and I have been continually rewarded by a strengthening of our connection, a deepening of our bond.

The music ceases and he moves on; the moment is gone. My youngest is thrilled his big brother initiated “play” with him, but after a brief hug for me he moves on too. I am struck that learning how to reach him is perhaps the single most important thing I have ever done for my boy, has been instrumental in his ability to trust, to comply, to deeply enjoy the world around him.

I will forever search for ways to meet him in his world.

I will never stop.

 

Follow me on Facebook at Autism Mommy-Therapist

November 14, 2017

Disney and Universal

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 10:59 am by autismmommytherapist

It’s that time again folks- time for my post-mortem on our semi-annual Disney trip with the McCafferty clan.

Spoiler alert- it went great.

Just in case someone’s eyes are starting to roll in a “nice that they can afford this” way, I will send a shout out to Grandma who paid for most of this trip, and to whom we are all eternally grateful that I even have the opportunity to take my kids on vacation.

And while I’m being thankful, I must include Justin.

This year we changed things up a bit and went to Magic Kingdom one day, and Universal Studios for two days. We had never been to Universal before, and to tell you the truth I held my breath on this one, as sometimes new things are not Justin’s forte.

Yup, even when that something new is an amazing amusement park.

I will share with you all here that he was magnificent. I will also share with you all that I had practically every minute of our three day trip planned for maximum “Justin enjoyment,” which was absolutely necessary. I knew where we’d eat each day and what time. I had a plan B that included half our group with a planned itinerary of what to do if Justin found the Harry Potter attractions to be of no interest. I had sketched out which rides and attractions we’d probably do and in what order. I even built in bathroom breaks.

In other words, I was in my A-type glory.

And it worked. At Magic Kingdom we used both our fast passes and the disability program to piggy-back rides all day, and because the park was not crowded we were able to go on about ten rides in under seven hours. Justin is okay waiting on short lines- what he’s not okay with is wandering around waiting for his ride wait time to come up so he can get on the fast pass line, which is how Disney’s disability program works. Fortunately because the park was not crowded we were able to fit in a ride or two in between our different passes, and we never had to wait just to get on line.

Taking in the sites is also not Justin’s forte.

We had the same success at Universal, but I will tell you that the real reason we were able to enjoy the trip and I was able to see the joy on my youngest son’s face when he visited Diagon Alley and Hogsmeade was Justin. Our first two trips to Florida were somewhat rocky with him, ranging from issues on the plane to sleeping to asking to go home every two seconds. This year it was as if the gods aligned for everything to come together. Except for the first night Justin slept as well as humanly possible in a bed not his own. He wasn’t ill. He waited. He was patient. He didn’t try to escape activities that held no interest for him.

I know. I need a moment for that last sentence.

And I will tell you this. Disney/Universal are really the only places we can go on a family vacation where Justin will be engaged, and not hanging out in our hotel room pacing all day with a frustrated adult in attendance. Vacation spots which would hold great interest to most families hold none for my boy- it would not even be worth the money to try. The truth is I want this family to have vacation memories too, despite the risks taking Justin on a plane, despite the uncertainty that he’ll sleep, despite the unknown of whether or not he’ll enjoy himself. I always feel a lot is riding on these trips- the chance for Justin to try a different environment, and just the plain old opportunity to have fun.

Remember fun folks?

There are so many factors that went into making this trip successful. Planning. Good weather. Fairly low attendance at the parks. Justin’s innate desire to have fun. His ability to wait.

His ability to be somewhat flexible. I know, can’t believe I wrote that one down either.

All of the latter reasons have come about because of so many different reasons, but I believe we had a successful vacation is because from a very early age, even when it seemed impossible, we exposed Justin to different places, and made him learn how to wait. I will tell you that I have little half-moon scars from his tiny teeth on my shoulders from way back when where Justin expressed his extreme displeasure at being somewhere most kids would decide was fun. His teachers, father and I persevered, and eventually I had a kid running up to me with sneakers in hand (often at inopportune moments like Christmas or 8:00 PM) begging to go out. It was years before this happened.

And it was worth every grueling moment.

The point of this missive? Get out. Have help if you can. Have a plan B, C, and D. When people offer assistance take them up on helping you take your child out on an errand, to a meal, to something that ostensibly should be fun. I will tell you that leaving the house with Justin was soul-sucking hard for years, and now it is mostly a joy.

Yup, I said joy.

My final piece of advice?

Get out, and don’t give up.

 

Follow me on Facebook at Autism Mommy-Therapist

November 1, 2017

Connection

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 9:15 am by autismmommytherapist

If I’d blinked I would have missed it.

As it was I heard my husband frantically calling my name, and I raced into my eldest son’s bedroom, wondering what calamity had befallen us now.

When my husband uses “that” tone, it’s usually a calamity.

I rushed in to find this tableau spread out before me- my severely autistic teenager sitting on his bed, grasping my mildly autistic 10-years-old’s arms, smiling and gazing up in adoration as his little brother towered over him.

I stop, hold my breath, and wait to see what will unfold.

I watch as my eldest child, who never really interacts with my youngest child, stands and bestows the sweetest of kisses on his sibling’s lips.

I smile in turn as I watch my youngest break into a huge grin and let out an “awwww,” clearly thrilled by the encounter.

I grin through eyes welling up, thinking of the hundreds of times I’ve tried to contrive this scenario, forge a connection between the two, let my youngest know his brother loves him.

And I realize, that love is there. It’s been there all the time. Justin may not show his bond the way we typical folks do, but he feels it too.

Tonight, he’s shown he loves his brother. He’s made him feel seen.

And I admonish myself for ever doubting this, for being sad that my youngest has asked if his brother loves him, for not being able to give him tangible proof that he does.

Tonight, there is proof. There is a connection strengthened. There is one son’s awe, and another’s delight.

And I wouldn’t have missed it for the world.

.

 

Follow me on Facebook at Autism Mommy-Therapist

September 25, 2017

Dear Soon-to-be-ex-case-manager

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:20 am by autismmommytherapist

Dear Soon to be ex-Case Manager,

The call from you came yesterday with that bland generic “my sons’ public school district’s” phone number popping up, and as always, I held my breath.

Is Zach sick?

Did I forget to send in his lunch (again)?

Is Justin’s placement in jeopardy (Dear God no, it’s too early for wine).

Fortunately it was none of the above, just you dear case manager, calling to tell me after about eleven years of almost continuous service for our boy, you’ve been reassigned.

Cue adrenaline, and deep deep regret.

I’ll have Justin’s public school administrators know that this was not in the Kim McCafferty lifetime plan, the one where we had you for the next seven years, inappropriately invite you to his high school graduation, and bask in our mutual understanding of one another. We’ve had two other case managers over the years and they were lovely, but neither lasted that long so I didn’t become attached.

Yes, I know I have an issue.

I easily recall the day you let us know you’d been reassigned once more to our family. It involved my 6’4” husband almost dancing (yes, I said dancing) across the front lawn holding out the phone to me as I waited for Justin, crowing with delight the words that filled our hearts- “She’s back! She’s back!” as I skipped (yup!) across our grass to grab the phone to hear it for myself.

Pathetic? Maybe. But I guarantee any parent of an autistic child reading this gets it.

The thing is, you “get” us, and you “get” Justin, and that’s absolutely priceless. I remember meeting you eleven years ago after we’d just moved to NJ from Washington, DC, and frankly, I was still in a bit of shock (and unbeknownst to me at the time about to get pregnant again, trust me, an even bigger shock). You calmly walked a very stressed out mom through all our options for Justin at that first meeting, and when things didn’t go as planned, helped us come up with viable alternatives.

You truly listened to us. As a former educator, I knew it was a gift.

The thing is, you’ve watched him grow up. You’ve seen him through three different communication systems, just as many placements, and you never balked when we came to the difficult decision that perhaps a public school placement wasn’t the right thing for him anymore. You (almost literally) held my hand as we looked at different options, scouted out others on your own, and led me away from places you told me you’d never send your own kids.

I can’t tell you how much I appreciated your honesty.

You always returned my calls, even in the early days when the sheer volume of my queries would have driven anyone to quit. You supported our choice of placement, rejoiced when he got accepted. When his iPad eventually broke (twice) you moved mountains to get it fixed so my boy wouldn’t be without his words.

In my words, I’m so grateful that you cared.

You see, the thing is dear case manager, I was hoping if this family kept our heads down the powers that be wouldn’t notice you’d been with us almost a decade, but I guess a little reorganization is in order, and it’s time to share the wealth of you. Before you go I want you to know how much your concern for our family, your organizational skills, and your knowledge base helped us. You were one less thing I had to worry about, and trust me, especially in those days where I had two autistic kids under the age of four, I needed one less thing to worry about.

I know that’s not in your job description, but thanks anyway.

You really were magnificent, and trust me, I’m a former teacher from a family of them, I know what’s out there. You will forever be a part of “Team Justin,” and have made a major contribution to my productive, kind, and happy child. Please take that knowledge with you when you go, and know how lucky those future families are (yes, I’m jealous). And know that if you ever come back, skipping and dancing will again ensue.

It’s a promise.

Thank you.

 

Follow me on Facebook at Autism Mommy-Therapist

June 27, 2017

Try Something New

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:06 am by autismmommytherapist

Ah, so much to share…

We’re in week two of Justin’s first summer hiatus, and there have been regressions and challenges. For the first time in years I’ve had to employ the angel guard on his seatbelt, as he was trying to get out of his seat to rearrange my CDs while I was driving (super fun, I know!). We went back to the days where he’s perseverating on the DVD player by pushing the buttons over and over and over (and over) to the point where the poor thing is going to break. There’s even been a bit of regression with toileting.

I’ll spare you the details on that one.

But throughout the chaos, there’s been light too.

About four months ago I got the crazy idea that Justin should try two new camps this summer. The truth is over the last five or six years Justin has not been big on trying new things. I am grateful that early on we got him out to places, because I believe that only since they’re now in his repertoire he enjoys time at the beach, Great Adventure, the boardwalks, and a few other locations, even if they’re for minimal amounts of time. To be fair in the last few years options for taking him places have dried up, so there haven’t been many opportunities to stretch him.

But then I heard about these two camps, which coincided with finding out his current camps weren’t running this year. So his momma decided to go for it.

The one camp I wasn’t too worried about was his week of horseback riding, although I knew it would be with totally different people and in a different location from his usual Saturday stint. His first day he hugged me really hard when I said goodbye, but I just knew it would be okay, that he’d acclimate.

He loved it, and they loved him.

Our second attempt into camp world gave me more hesitation. Its activities included soccer, stretching, arts and crafts, all things Justin has traditionally shunned since he turned five. I wasn’t sure he wouldn’t be clutching his aide and plaintively saying “Mama” in an effort to be saved from yoga, but again, he surprised me. They told me he participated in everything, that he loved it.

And again, they loved him and were disappointed I’d only put him in for two days.

Justin is fourteen now, and entering his transition phase. In seven short years (and I’ve been told they go fast) he will be graduating high school, headed for the big unknown. I don’t know what the future will bring for him, if I will be able to find a good day program for him, maybe a small job, eventually a place to live.

But I do know this.

No matter what his adult life entails, he will be asked to try new things, to go to new places, to adjust his routine and acclimate. He will be pushed and stretched to accept a new life, one that does not include his school, or one day living at home with his family.

And the best way I can help him to do that is to push him to stretch his limits now.

So I will continue to do this, even if the paperwork kills me (try applying for a Performcare aide, I dare you.) I will take chances for him, make the zillion appropriate phone calls, fill out the twenty page applications (by hand of course!) and keep trying to give him opportunities to grow. He deserves the most full and rewarding life possible.

And I’m going to do everything I can to see he gets it.

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

Follow me on Facebook at Autism Mommy-Therapist

December 19, 2016

New Year’s Evolution

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:23 am by autismmommytherapist

disney-and-halloween-2013-029

(Editor’s note: I run this piece every year, it just seems to sum up everything. I hope you enjoy it!)

We made a gingerbread house today, my youngest and me. Not the fancy
version mind you, with its cinnamon-spiced cookie walls and sticky-sweet
icing for snow, but the felt version, as I have yet to figure out how
to create an edible construct that’s gluten and casein-free. The form
doesn’t seem to matter to Zach however, as he seems content just to
forge this linen building with craft glue and discretely adhered masking
tape. He is simply happy to sit at our designated table with his mommy,
and design his own.

I am thrilled to be here with him as well, as this is the first
“Christmas house” we have built together, and the added bonus is it
conjures up the requisite images of festive architecture from my
childhood past, pleasant in their remembrance. As I sit with him and
attempt to gain better purchase on the tiny chair I am well aware of the
enormity of this gift, the ability to carry on a tradition with my
child, one who is eager and willing to perform it with me, one who
miraculously was able to request its creation.

It’s the last month of the year, and as always, just like the
commencement of the school year, it’s a time of reflection for me. I
consider where we’ve been and where we now reside as I help Zachary
fabricate his house, watch him carefully separate out the pieces of his
one-dimensional art form with such care, and manipulate the tiny forms
with such ease. He desires to begin at the top of his home and work his
way down, and as I’ve never been one to insist on coloring in the lines
we alter our blueprint a little, an act we’ve committed time and time
again in our tiny family of four.

He begins with the roof, which he tells me firmly we require because
“it will keep everyone warm and cozy”. As I contemplate how he’s
incorporated the latter adjective into his lexicon of words I am
simultaneously reminded of the outpouring of care and compassion we’ve
received over the years, the small and grand acts of largesse, and the
kind words both spoken and written to encourage our clan in times of
conflict. These acts have blanketed us, permitted this family to retain
the heat, the fire necessary to forge through the most searingly
difficult times. We could not have built our own home without them.

Once the roof is safely adhered Zach moves onto the windows, neatly
punching through the cloth panes of glass to afford us a glimpse of the
other side, allowing us to widen our view. I recall how watching my
youngest son’s language expand, and my oldest son’s increasing desire
for social interaction, have both enabled me to envision a different
world for my children this year. We now inhabit a home in which the
future may hold more than just fleeting glimpses of a “normal”
childhood, one in which both of them may actually one day possess a true
friend. I am so grateful for that expanded vista, for the possibilities
inherent in those translucent frames.

Finally, Zach addresses the foundation, shoring up the edges with his
tiny fingers immersed in solvent, asking me if his careful
ministrations are correct. I smile and tell him his house is lovely, as
in its own way, is our own. Our foundation has also been conceived in
patience, moored in consistency, cemented in love. It’s not seamless,
and there will always be cracks. But it will continue to stand.

It will always stand.

And my wish for all of you in every year to come, is that your own
house, no matter how it’s constructed or what form it takes, will
continue to stand, wind and weather-battered, as magnificently strong as
ours.

(I’d like to take just a quick moment to extend my immense gratitude
to all of my readers this year. I am so appreciative of the time taken both to read my
missives and to comment on them, and your continued loyalty.
Happy holidays to all!)

 

Follow me on Facebook at Autism Mommy-Therapist

November 21, 2016

Giving Thanks

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:50 am by autismmommytherapist

summer-2016-034

Every year around this time I try to do a post where I list all the things I’m thankful for, then admonish myself to reflect on these things more often, then forget to do that, then eat more chocolate to compensate.

I am, as always, a work in progress.

I am delighted to say that even in the midst of some challenging times with Justin I’ve found some things I’m truly grateful for, and am not just paying lip service to Thanksgiving.

I hope all of you have a wonderful holiday. For some of you I know this day is more about stress than fun- my hope for you is that at least you can find several moments of joy, some great food (if you have to escape early make sure your families pack up some pie for you), and at least a bit of peace.

And if all else fails, remember there is always wine.

Here are my reasons for gratitude this holiday:

-Despite our challenges at home, both boys are doing great in school. Honestly glad Justin saves it for us

-Grateful for my family and friends, who just get it

-Am grateful for other bloggers’ perspectives, both autistic and NT

-Profoundly grateful for the boys’ compassionate and understanding teachers and paras

-Grateful for Zach’s incredibly patient baseball coach

-Thankful for the community who helps my kids (more than a mere village I promise)

-Grateful I married the right guy the first time (God it makes things easier)

-Profoundly grateful for my readers and all their encouraging comments

-As always, thankful for my loves, chocolate and wine

-Grateful for Justin’s words and our sing-alongs!

-Thankful I still (albeit briefly) manage to make time to revel in every one of their accomplishments

– Grateful for my boys, my hubbie, and our life together

Happiest of Thanksgivings to all!

 

Follow me on Facebook at Autism Mommy-Therapist

October 24, 2016

Sing, Sing a Song

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 1:36 pm by autismmommytherapist

summer-2016-032

He slides onto the chair with me, smelling sweetly of baby shampoo, an incandescent grin lighting his face. My boy knows what’s coming in his bedtime ritual which he adores, a ritual which will include an Eric Carle book, songs his mother will butcher, and what I generally call the “Justin/Mama lovefest” which precedes his exuberant dive into his bed on a nightly basis.

We know how to adhere to ritual chez McCafferty.

Justin’s been using his words more frequently lately, and for the past few weeks I’ve been letting him read parts of his nighttime book to me, which has been a thrill for both of us. The kid looks at me with pride after reading every single syllable, and trust me, after waiting more than a decade for mere coherent sounds to emerge from him, that gaze is returned.

Those words are pure gold.

We wrap up the first part of the ritual and Justin snuggles more securely into me (he’s almost my size now, I’m wondering how we’ll do this when he’s an adult), and I embark on my own fractured versions of his made-up baby song, “Over the Rainbow,” and “Silent Night,” which for some reason I began singing to him years ago and haven’t deviated from our playlist since.

I start my rendition of “his song” that I made up in desperation almost thirteen years ago to try to stop him from crying (it didn’t work), then stop as a brainstorm occurs in my withered synapses (I don’t have them that frequently anymore, so they must be honored).

If Justin can read to me, why couldn’t he sing to me too?

I start over with his baby song, then stop when we get to the “mama/dada” part and look at him expectantly. He stares back at me with a grin on his face, silent. I urge him to “sing Justin,” and he looks at me one more time, and damned if he doesn’t fill in the blanks.

Intraverbals at their very best.

I know that some of the words in their entirety will be beyond him, so with some of them I throw him the first syllable(s)- the “rain” in “rainbow,” the “lulla” in “lullabye,” and he gleefully fills in the rest. There are a great deal of consonants in the last words of every line of “Silent Night,” but he struggles mightily with his task, and with a little help he makes it through.

He’s tired tonight, so as soon as our singfest is over he kisses me and heads over to his bed, waiting to be tucked in. His bed is white, and I have a flashback to another piece of white furniture which housed him as a baby. He used to pull himself up with that one and often flash his toothy grin, and I can recall wishing desperately that we’d find some way for him to communicate which didn’t require pinching or crying.

Now, a dozen years and a lifetime later, my boy is singing to me.

And I can’t wait to do it again tomorrow.

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

Follow me on Facebook at Autism Mommy-Therapist

Next page