June 24, 2020

Father’s Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments tagged , , , at 10:50 am by autismmommytherapist

 

Dear Jeff,

It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.

My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.

It wasn’t necessary. You’ve been there for him, and for me, every step of the way.

I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).

I know there have been days with Justin that have just completely broken your heart.

And yet, you never give up trying to give our son, and our family, the best life possible.

When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.

I truly don’t know how we would have made it those first few years without that bold move.

We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.

You’ve been there to help me with all of them.

You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.

You have been my sounding board, my sanity, my friend.

Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.

He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.

He is one lucky boy.

I am one lucky wife.

From Zach, Justin and myself, Happy Father’s Day my love.

 

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June 17, 2018

A Father’s Day Message of Expectations

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 6:50 pm by autismmommytherapist

IMG_5110I am Jeff McCafferty, Kim’s husband, with a special Father’s Day edition of the blog. I hope you find the post to your liking and that you share it with those for whom it will resonate.

 

“Fathers don’t take it well.”

That is what our pediatrician told my wife, Kim, after she asked him why he chose then to tell her, without me present, our son Justin was likely autistic. After all, both of us had taken Justin to the doctor a few weeks earlier and he gave no reason for concern.

Our journey in trying to help Justin was delayed because our doctor was afraid to tell me. What experiences had he seen that made him come to the conclusion I, and fathers in general, would “not take it well?”

An autism diagnosis surely elicits an array of emotions from fathers and mothers alike. At the time, I wondered a lot about what it was that made fathers, in particular, in this doctor’s experience, “not take it well.”

While there may be several explanations, the one that seemed the most plausible to me was that fathers are perhaps more likely to place certain expectations on who their children would become and what they would do in their lives. Expectations can be dangerous things especially if they do not come to pass as planned.

On that fateful day, once Kim shared with me the doctor’s concerns, I did not get overly upset and I did not blame myself. At the time, I did not quite understand the implications of autism and I did not appreciate the genetic connections that would likely lead to me being a major contributor in the diagnosis; as looking at Justin and me together, you can clearly see he is swimming deep in my gene pool.

When our other son, Zachary, started to go down the same path as Justin, my reaction was much different. While Justin had issues almost from the day he was born, Zachary was developing well. He was the life of the party. He could light up a room. I saw the world as his oyster. I had a chance to build those expectations.

Then he got sick at about 18 months. The light that sparkled in his eyes went dark, and the son we had known was gone. As his conditioned worsened, I was “no taking it well.” But, understandably, neither was Kim. This happy and healthy child was quickly transforming to a life of pain and struggle and it was beyond heartbreaking.

Moreover, I had allowed myself to visualize who he would become and was selfishly thinking how I would take him to ballgames, play catch, and do all of those things we take for granted that kids do with their dads. Based on our experience with Justin to that point, I could see all of that slipping through my fingers and I was devastated.

Several months after his ailment, through a variety of interventions, Zach started to improve, and so did our hopes for him and us.

Zach and I have been to baseball games, he has played sports, and we do “dad things” that years ago I thought would never be possible. But Kim and I know well enough that he is the exception, not the rule.

Looking back with a more informed lens, I learned something; an autism or other type of serious diagnosis does not mean in all cases that dads cannot do “dad things” with their kids. How it evolves may be different than expected, but I have seen many fathers with autistic kids, some fairly severe, who are extremely involved and active with them.

Even so, the life of a family with an autistic child, or any special needs child, can often be impossible and incredibly daunting. We all want our children to be happy, healthy, and safe now and through their adult lives. In our days within the confines of the autism community, we have seen many families, whose children are impacted, who struggle to make that happen.

Those basic needs, I surmise, are the baseline expectations. At least for me and Kim they are.

What that means for each child is somewhat different. Barring new medical breakthroughs, Justin is likely going to require daily lifetime assistance. We revel in the simple things that make him happy; a favorite story, his DVDs, our nighttime rituals. When those are diminished because he is physically struggling we are not only concerned about his current well-being, but also his future when we may not be able to take care of him. We know that if it were up to him he would like to do the same things in his 80s that he can do now and spend his final days dancing in his extremely old mother’s arms.

For Zachary, while his happiness, health, and safety are also of the utmost importance to us, he has a world of options available to him and will not require the assistance that Justin needs moving forward. For him, our goal is to protect him as best we can as a pre-teen while letting him explore who he is and what he wants to be.

On this Father’s Day, I would like to salute the dads who every day fight the good fight to make the lives of their children and other children, on the spectrum, the best they could possibly be.

And I can tell you, I have met some amazing dads over the years. Some with autistic children have started charities to raise awareness, provide social opportunities, Santa visits, respite relief, and housing. Others are not as much in the spotlight but are grinding away every day in their daily lives to ensure that their families have the resources to pay for all of the services and everyday necessities required to keep them healthy and safe. Many are directly and actively engaged in their children’s daily activities, and it is a wonderful thing to behold.

I have also been and will forever be touched by the generosity of fathers without special needs kids who “get it” and give their time in both formal and informal ways to help autistic children in our community and across the nation.

We are also blessed to have some amazing fathers in our lives who I would like to thank, including my father, the boys’ uncles and great uncles, and so many other friends and family who are dads (and not dads) who understand, and offer unconditional compassion and support. For any father, or mother, reading this, my wish for you is that you are equally blessed.

I probably will never fully understand why our pediatrician feared telling me about Justin’s autism all those years ago. In the end, it really does not matter. What does matter is that our children get the support they need to do the best they can. And all you fathers out there can be instrumental in making that happen. They should expect nothing less from us.

Happy Father’s Day!!

July 7, 2010

All Hands on Deck

Posted in Life's Little Moments tagged , , , at 6:33 am by autismmommytherapist

“We’re going to Great Adventure, Mama?”

“No honey, we’re going on an adventure, perhaps a great one, but not THE Great Adventure.”  Zachary looked at me quizzically from over his breakfast waffle, clearly confused as to the day’s events. I assured him that he would enjoy our trip, and to eat his breakfast, because every boy who’s going on an adventure needs a full stomach. He seems to agree with this edict, and complies.

It’s Father’s Day, and I’ve booked the three of us on a pirate ship for the afternoon, which is perhaps not quite my husband’s idea of the perfect holiday activity. Today, however, dads go free, and even though it’s 92 degrees in the shade BY GOD we are going to take advantage of the bargain price. Besides, the free ticket helps mitigate the cost of the babysitter for Justin, who would relish this particular adventure about as much as he enjoys having his blood drawn. Face painting, group instruction on pirate lingo, sea legs, and treasure that doesn’t light up or spin- not Justin’s bag.

The entire experience however will be completely up Zachary’s alley, and it is evident from the moment we disembark from the car, grateful to find the last remnants of shade afforded us by a dumpster on the outskirts of the parking lot. My youngest son is mere steps from our vehicle when he insists on donning his black pirate hat, and even though I know wearing it might actually boil his brains, I concede. Unfortunately my boy reacts to heat in identical fashion to that of his mama, complete with beet-red face and drenched clothes reminiscent of complete immersion in a swimming pool. How I survived fifteen DC summers remains a mystery to me.

But today I’ve come armed with ice-cold water I’ve informed Zachary will be poured on him whether he likes it or not, and he is so entranced with the promise of upcoming activities he puts up little protest as I repeatedly splash him. After we check in and receive our “boarding passes” Zach asks if he can get a tattoo, and since he’s a Jersey boy after all, of course we give him our permission. He sits patiently in the sweltering sun to await the completion of a large, well-defined anchor on his arm, and at the conclusion of his painting activity declares “he is now a pirate”. I fully believe him.

Eventually, the head scoundrel’s buxom assistant calls all hands on deck, and approximately fifteen young buccaneers, ranging in age from three to nine, heed her request. They form a line. They listen to instructions. They repeat pirate axioms with great gusto. Zachary complies with almost every command, attempts the imitations of swarthy pirate moves, bellows pirate terms with great pride.

All of it, every syllable uttered, every movement replicated, seems miraculous.

Eventually we heed the siren call of “All aboard!”, and make our way slowly down the steep dusty slope to board our vessel. Zachary remains in line the entire way to the waiting ship, diverging from his set path only once to relinquish the pirate hat that has indeed begun to permanently alter his brain chemistry. Jeff and I stand off to the side and watch as a dozen or so young children board the boat, exchanging high-fives with the captain, and respond to the command of “all hands on deck” by haphazardly seating themselves on the bow. I watch with some amazement and disbelief, as I realize I have now participated in an activity with someone I’ve given birth to and not held their hand for over fifteen consecutive minutes.

I am already enjoying myself immensely.

Once we are out to sea we gratefully refresh ourselves with the welcome breeze the river affords us, and as I feel the sweat on my body transform into a light layer of salt I realize I may not melt after all. It quickly becomes obvious that parents are supposed to remove themselves somewhat from the activities, and I notice that most of the moms and dads have congregated in the stern of the boat, parceling out whatever remnants of shade they can find to one another. I lay claim to my personal patch of relief, and watch my husband as he searches for his own. I turn around and regard a gaggle of children watching the pirate’s vixen with intense concentration, as she outlines their journey, the upcoming conflict with a rogue pirate, and the inevitable search for stolen treasure.

Zachary is quietly ensconced within their midst, aptly listening. Obviously, he takes his adventures very seriously.

Our journey takes us a little more than an hour, and I watch transfixed as my son (for the most part) follows directions, douses that maritime villain with a cannon that dispenses water, and waits somewhat patiently to claim the treasure so rightfully his after his work on open water. He even partakes of grog (root beer, don’t worry) from an open cup, a receptacle he has adamantly refused to imbibe from both at home and at school.

Apparently drinking from plastic other than a sippy cup is only permitted on the high seas.

I realize, for the better part of an hour, I have sat or stood with my husband, felt the kiss of sun on my face, embraced the cooling gift of the river’s breeze, and left one of my children primarily to his own devices. We’ve even been treated to good tunes, with Springsteen being dutifully and appropriately trotted out intermittently throughout our journey. My husband, despite missing part of the Master’s, is happy. Zachary is ebullient. Although I’d require a margarita for complete fulfillment, I am grinning ear-to-ear with the normalcy, the peacefulness  of this tableau.

Technically, this is not “my day”. But to me, this Father’s Day is synonymous with paradise.