July 31, 2018
Patience
Patience is a virtue I do not have in spades.
I say this and laugh, because instead of making list-oriented New Year’s Resolutions this year, I simply asked for patience, happiness and peace. Last year (unfortunately) like this year was very challenging, and really, I was just going for baseline.
It turns out I’m a work in progress.
This summer I’ve seen a lot of ups and downs with our boy. At this point, to tell you the truth, we’re not even sure what he has anymore. We have a consult with his neurologist next week, there may be answers,, there may not. Justin seems to make progress, then slips again. It is beyond frustrating not knowing for sure what is going on not because I need a label, but because I don’t know how to treat it.
Still, there are some things I am immensely grateful for.
His school has been incredibly patient with all his changes, and once again I am beyond thankful that we made the decision to put him in a private placement all those years ago. His school truly is his second home. We are lucky.
To my immense relief we are still able to take him places, places he’s loved since we moved here when he was a toddler. I’ve been worried we’d lose that ability to take him out, which has meant so much to him and to me over the years.
Finally, we’ve seen some of his intrinsic joy return. This aspect of whatever he has has been the most difficult part for me. My boy, despite severe autism and OCD and this new challenge, has always been happy in his core. To see glimpses and periods where this child has returned has meant, well, everything.
Psychologically I know whatever this new challenge is his progress will not be linear. I don’t honestly know where we’ll be tomorrow, next week, or a few months from now. I guess the truth is none of us knows this, but it is particularly difficult for me because this is my child’s life, the one we’ve sweat blood and tears for for fifteen years to make it good for him.
I, not so simply, have to wait.
And I sincerely hope the universe grants me patience.
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July 18, 2018
I Can Never Die
I can never die.
Now listen, I know the reality is that eventually I will, despite the running and the elliptical machine I love and the yoga and the 32 ounces of water I (sometimes) dutifully consume daily. At some point, my heart will cease to beat, those aged neurons will stop firing in my brain, and it will no longer matter how much broccoli I ate that week (probably a lot). Death comes to all of us eventually, and while I’m pushing for that centenarian age that many of my relatives have come close to achieving, intellectually I know it will come.
Emotionally I’m not so cool with it. You see, I have a severely disabled son.
He needs me until the last moment his tender heart ceases to beat.
I would be lying to you if I told you I thought about this all the time. I have tried to relegate this reality to a back shelf in my brain, knowing that if I thought about it all the time I’d be permanently ensconced in the fetal position, which won’t get the laundry done. There’s no point in torturing myself, and quite honestly I can go days before his sobering reality crosses my mind.
With autism there are plenty of other things to occupy my brain.
At some point down the road we will have to make some big decisions regarding Justin’s adult life. Eventually my husband and I will be too decrepit to handle my someday close-to-six-foot son and his needs, and since his little brother has stated for years he’ll visit his sibling but doesn’t want to take care of him (he gets how much work it is) we will be looking for a residential placement for him. I have ambivalent feelings about this impending decision. On the one hand, since I know it’s inevitable that he will need to sleep somewhere other than his under-the-sea room I have a certain acceptance level about his relocation. I could even tell myself that in theory, (although I wonder about this generation) most adults usually leave the nest, so why should he be any different?
The problem with that line of thinking is that while his chronological age may be in his thirties, I can bet you some really good chocolate that he’ll still like Baby Einstein videos and want his caretakers to read him an Eric Carle book before he goes to bed, which I’m not entirely sure will fly with his staff.
In his soul, he will remain forever young.
On the other hand, I worry about the possibility of abuse, neglect, and perhaps him not having someone in his daily life just to love him, which since he’ll be without me for a good forty years simply breaks my already fragile heart.
Honestly, I can’t begin to fathom how it will work without my being with him, how someone will know inherently what he needs even when he can’t express it on his iPad or with his limited words.
How will dozens of caretakers over the years know that he’s not being resistant to putting on his shoes, he simply needs the left one on first?
Who will cajole him with puzzles, dancing, and sometimes a simple good old-fashioned hug?
Who will understand his word approximation for “juice,” or understand he’s putting his dirty hands on the refrigerator not to make a mess but just to get more of the lettuce his mom was so proud he ate?
Who will navigate the myriad of medicines and supplements he takes, taking the time to tweak and adjust as he ages?
Who will comfort him when he gets sick?
Who will foster his affectionate nature when he craves the contact that centers his soul?
Who will love him when I die?
I’ve been told to have faith, to keep hope alive that dozens and dozens of caretakers whose grandparents have just been born will treat my boy with the kindness he deserves. I know there are good group homes with men in their seventies, eighties and beyond who’ve carved out a life without their families, some who’ve even gained a measure of independence.
I believe there are some autistic adults who lead good, full lives.
All of this circles around in my brain when I allow it to contemplate his future. I know there are success stories out there, and I comfort myself with those.
But still, it seems impossible that someday I won’t be there for him, to guide him, to make life choices for him, to love him even when he is difficult.
I need to live to 132, just in case he inherited the genes from my mom’s side of the family.
I can never leave him.
I have to leave him.
The situation is impossible.
I can never die.
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July 3, 2018
Dear Universe
Dear Universe,
Okay. You win.
Here’s the thing Universe. Whether you acknowledge it or not it’s time to cut this family a break. We have remained collectively upbeat this past twelve months despite some really nasty life changes I won’t go into here, plus the chaos of our house almost burning down and the four months of repairs that ensued.
We have been really, really mature.
I probably brought this on us by allowing myself to breathe a sigh of relief this fall when things were looking up. You see, I relaxed my vigilance with autism and its never-ending surprises, and that’s when catatonia came to call.
You got me universe. With the onset of puberty I was gearing up for seizures and renewed aggression. I’d never even heard of autism-related catatonia.
Again. You win.
But here’s the thing universe. This family has weathered Justin’s aggression, insomnia, refusal to eat, eating too much, extreme OCD, refusal to potty train, and probably a host of other issues my very tired brain has blocked out to survive. Each time, Jeff and I sucked it up and went at each issue with a many-pronged approach, employing behavioral techniques, using medicine when necessary and being vigilant in our efforts to help our boy. The truth is universe, it gets more difficult for us every time because we’re older, which doesn’t bode well for us since we’re looking at at least another decade of full-time care of our son, and probably much longer than that.
I guess what I’m saying is I’m reaching my “sucking it up limit.”
It’s been eight months since Justin’s symptoms started, and the irony of it all is we’ve consulted four different practitioners, and there have been five different diagnoses trotted out for him (yes, I said five). Of course, just to keep things fun, these five different diagnoses all have completely different treatments, so I anticipate if things don’t improve for Justin, trying everything out could take until he’s twenty-five.
Okay, maybe another year, but it will FEEL like he’s twenty-five.
It’s been a long eight months, universe. The thing is this thing he has, whatever it is, is a game changer. I’m not sure he won’t get kicked out of camp because of it. I worry no twenty-one plus program will take him with it. If his symptoms progress I worry about his residential care, because at some point dear universe, Jeff and I will need someone to take care of us, and I can tell you right now that someone won’t be our eldest boy.
In other words universe, this is a big freakin’ deal.
We’re making some changes with him medically, and I’ve been told both that the symptoms can go away or at least go into remission, so we do have hope. We’re doing every suggestion that’s been made to us (like we always do), so universe, I’m asking you to come to the table and do your part.
Help my son. It just can’t be that hard.
I hate whatever the hell it is that he has. When he’s in an episode, he is robbed of all joy in his life. When he’s not in an episode, he is the happiest, loveliest child ever.
Bring back that child.
I want him happy, healthy and whole. I want him to be able to enjoy the summer, this season that he loves so much.
I want to see him smile.
Pony it up universe.
I’m waiting.
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June 17, 2018
A Father’s Day Message of Expectations
I 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!!
June 11, 2018
The Shift
It’s June, time for another round of “endings.”
I know most people view December as “the big cahuna.” This is the time where New Years resolutions are made (and subsequently broken), and people look back on the year that has just passed and figure out what they can do to make the next year a better one. I have to admit the optimism I always have for the impending year usually outweighs my sadness at leaving the current one behind, the knowing that I’m twelve months closer to the “great beyond” no matter how much kale I consume.
I’ll tell you a secret. Kale won’t help my longevity. I don’t eat it very much.
The June endings are of course tempered by the knowledge of an imminent summer, and I am a summer girl. One of the many glories of being a teacher was having those summers off (now I work harder in the summer schlepping my kids everywhere than I do when I actually work during the school year), and I reveled in that time to recharge, kick back and relax. When I taught there was (usually) some sadness as I said goodbye to my students, particularly when I taught sixth grade and knew they would be scattering all over Fairfax County. I’ve never been really good at goodbyes, and some years I admit to some collective tears being shed amongst me and my students (okay, just the girls) at our impending separation. Still, I knew there would always be another year of connections to be made, and I knew “my kids” were moving on which was a good thing.
Did I mention also how much I love summer?
Zach and I have a big ending coming up next week as he moves on to middle school. Over the past few weeks I’ve chatted with other moms saying goodbye to Midstreams as their last child moves on, and we are all having a hard time with it (one mom and I decided we’d probably have to be escorted out of the school after graduation). Since I’m not the “transition queen” I will probably be a mess next Wednesday, with my husband offering me tissues and not completely getting what all the fuss is about (but honey, it’s about all the friends I made while volunteering too!), but I will get through it.
As I mentioned in my last post, it’s time to man up and be brave.
The truth is, however ambivalent I’ll be at leaving the Midstreams cocoon next week there are threads of joy woven throughout this sadness, my sense of loss tempered by the knowledge that my boy is growing up well, that for him every ending is just a new beginning. My youngest has done well at school, has friends, has participated in clubs and activities that held meaning for him. My fingers are crossed that his next seven years will entail more of the same, and I have every hope he’ll weather any hurdles, will continue to stretch himself both academically and socially. The world is literally that kid’s Jersey shore oyster.
And I can tell you all now I want exactly the same for my severely disabled son too.
My son Justin is fifteen years old, has severe autism, OCD, and just recently landed himself a diagnosis of autism-related catatonia, which quite honestly has been a game-changer for a family who thought (hah!) we had the disability thing somewhat under control. He is in a wonderful school placement, one I will literally do anything (yes I mean it) to keep him in for the next few years until he graduates at twenty-one. Hopefully his big ending won’t occur for the next six years, because truthfully his mama needs that much time to deal with it, and I’m hoping to have a plan in place for him that will somewhat echo the previous fourteen years (my nickname for his school is “Disney,” they’re just that good).
What happens after twenty-one you might ask? Well, I’ll tell you readers, that is literally the million dollar question.
Justin’s school actually has an after twenty-one program housed on their campus, set in a building Justin’s been going to for years to work out in and learn life skills. My boy loves his routines, and I know in my heart we have a greater chance of him making the transition from school to adult program if he is familiar with his surroundings. I’m envisioning the possibility he might try to “escape” to his old haunting grounds if he’s so lucky to be accepted, but in the end Justin is a rule follower, and I know he’ll eventually get that that part of his life is over, that a new chapter has begun. There are many factors that will go into deciding whether he goes there- what kind of budget I’ll get from the DDD, whether or not there are any openings, how Justin is behaving at that time in his life. Nothing in life is guaranteed, but I know without a doubt that he would love their program, that it is his best chance at having an adult life outside of our home, which I deeply wish for him.
And being totally honest, I wish it for me as well.
Years ago I made a mental shift regarding Justin. I stopped wanting the trappings of what I considered a “normal life” for him, and made the adjustment to wishing he’d simply lead the best life to suit his needs. I let go of wanting the things I expect will take place in Zachary’s life- college, a job (yes please!), his wedding (can’t wait I will be a nice MIL), and hopefully a lovely social network for my boy. Instead I focused on getting Justin what he actually needs and wants in his life, which are not any of the things his brother will want for himself. That shift, that realization that Justin could lead a happy life completely different from that of his sibling profoundly changed my outlook on his life.
It made Justin’s endings and beginnings seem as potentially bright as his brother’s.
I can’t wait to see what will enfold for both of them. I know until my dying breath I’ll be plotting and planning for Justin ( I once mentioned something about his “eighty years on earth” in an IEP meeting and was met with a few blank stares),and I hope I can craft as fulfilling a life for him as the life my youngest will undoubtedly craft for himself.
So here’s to endings, and the burgeoning possibilities they bring with them.
And here’s to new beginnings- may they be bright for all our children as well.
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June 4, 2018
Tribute to Midstreams Elementary School
To the Midstreams Elementary Staff,
It’s over. My son is graduating from the cocoon of his wonderful elementary school, and it’s time for Mommy to be mature about it.
Don’t hold your breath.
I knew this day would come. For the past few years I’ve breathed sighs of relief at every school event, reveling in the fact that this wasn’t the last one, that we had a year or years left of field day or book fair or holiday shop. Today I don my bright blue field day shirt for the last time and head to the fields, cognizant of the fact that this is the first of many “lasts” in the weeks to come.
Yes, I’ve already turned to chocolate.
I can still remember (which is quite a miracle really) a day five years ago when his principal kindly granted him a special tour of the school because we had to miss the “new arrivals night,” my boy both anxious and excited to leave his pre-school and start a new adventure. Over the next five years I’ve watched my son thrive in this academic yet fun environment, watched him stretch himself past his safety zone with the encouragement of his teachers.
By the way, I’m a former educator and I loved every last one of them. Yes, people, that means something.
Zach has a severely autistic older brother who happens to also have OCD and catatonia (the disability tri-fecta!), and I would be lying if I didn’t reveal that I spend a great deal of time worrying about him and his needs. The truth is having our youngest in a wonderful school placement has permitted my husband and I to spend many hours contriving things so Justin will be happy, as I am a firm believer that every family is only as happy as their least happy child.
Trust me, after fifteen years of dealing with autism, this is “truth.”
The glory of having his sibling in an environment where his teachers not only “get” him but love him is indescribable. For five years I have never once worried that any bump in the road would be addressed by both his teachers and his principal, that my son would be pushed to be his personal best, and equally important, that he’d have fun doing it.
This has allowed me not only time to focus on Justin’s needs, but to keep up with my tv shows. I have my priorities.
For half a decade I have witnessed a clan of teachers who listened to my boy, encouraged him when necessary, and perhaps my favorite, facilitated his burgeoning independence. They have inspired him to love learning (I know this because he often quoted all of you at home), to take responsibility for his actions, and to remind him to raise his hand when he has an idea (a continual work in progress). I have had the joy of knowing that his principal and former assistant principals would always be approachable if any issue arose, have been confident that a solution to any problem would be found.
Clearly, I am a fan of this school.
Sometimes, it takes a little bit more than a village, and my son has been fortunate to find a community within which he has thrived. My husband and I can’t thank all of you enough, from the custodian to every para and every specialist, to two amazing secretaries, to all his teachers and ancillary staff as well as his principal and assistant principals, for your care of our boy. For five years (once he’s awake, still a struggle, wondering how that will go next year) every single day he’s been excited to go to school, and I deeply thank all of you for fostering that love of learning within him.
We will be back to visit. Both Zach and I will need our fix.
From the bottom of my heart, thank you for taking care of my son.
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May 29, 2018
One More Try
Your “eeees” resound throughout the farm, and I smile to know how excited you are to show off your horseback riding prowess, how thrilled you are that your parents and brother and grandmas are here to watch you revel in your favorite pastime. I also smile because those “eeees” mean the catatonia is at bay, that what’s started off as a good morning may continue while you strut your stuff.
Today, my smile will be vindicated.
You are always so calm on a horse, have been so since you began therapeutic horseback riding at the tender age of five. You weren’t so thrilled about it at the start (you let us know in no uncertain terms that horses were the devil), but something inside me said to keep at this, and I’m so glad I did. You grew to love your weekly sessions, rocking back and forth with anticipation each week in the car, walking so quickly ahead of me to the barn I had to run to catch up with you.
Your joy was, and is, palpable.
Part of why I pushed you was because I was bound and determined to find something, some hobby or pastime that you would like other than your DVDs and driving around New Jersey on Rent-a-Car websites (while entertaining, it’s not exactly aerobic). Truth be told if I could host a horse in our backyard I would (hubbie, if you’re reading this, don’t freak out), but for now I have to settle for a once-a-week ride. I love the fact that you can do this for decades, can even get your equestrian fix after I’m gone (yes, I’m always thinking ahead).
Somehow, I will find a way for you to ride when you’re seventy-five. I’m just that much of a planner.
If some of you are thinking “no way, no how” could you ever get your son or daughter on a tall animal, perhaps you’re right. The first time we tried when Justin was in kindergarten he needed two people flanking him to keep him on the horse. He started off desperately trying to escape, and by the end of the twenty minute session he was calm and I even saw the ghost of a smile on his face. He certainly wasn’t as enamored of the saddle as he is now, but it was enough for me to see the burgeoning possibilities of an actual sport for my son, something he could do that would stretch him and get him out of the house.
Trust me, it wasn’t always easy to get him out of our home, but that’s another thing we’ve perservered in, and it’s opened up the world to him.
When Justin was little he was so much more difficult to deal with than he is now, even though he’s newly diagnosed with catatonia which brings its own challenges. His sensory issues were much more pronounced back in the day which I’m sure contributed to his angst, but somehow I knew if I started early getting him to go to places and doing activities these locations would become part of his routine, and eventually he would accept them. We pushed the beach, the boardwalks, Great Adventure and even Hurricane Harbor. We eventually even got brave and when he was ten we took him on a plane to Disney, where for a first trip away from home he did remarkably well. The truth is, I kept at it when he was young also because I could still physically remove him from any situation at the time, which at fifteen, is quite beyond me now.
Mommy’s tough, but not tough enough to budge a teenager.
Honestly, it doesn’t matter what the activity or outing is, and you may have to kiss a lot of frogs before you find your proverbial prince. I want you to know I am well aware this isn’t easy. I’ve had trips where I’ve returned with bitemarks all over my shoulders from having to remove my child from a situation. I’ve had bruises on my shins where I’ve been kicked repeatedly for trying to leave a place, been drenched in sweat as I’ve wondered if I was tough enough to get him in the car before someone called the police on me for abducting a child. Often our outings were baptism by fire, with me swearing to myself “never again.”
I’ll tell you a secret. There was always “just one more try.”
Justin has his limits as to where he’ll go, and more importantly, how long he’ll stay. The kid who we used to have to drag off the beach will now only make it an hour (and sometimes it’s work to get him there that long), but he always has a smile on his face when we’re done. I know we wouldn’t be able to have these expeditions if I hadn’t braved his meltdowns when he was little.
Not sure about a lot of things with autism, but of this one I’m certain.
Finally, warm weather is coming, and we’ve managed to slough off a tenacious winter during which it’s easy to stay inside. My advice to anyone starting out with an autistic child is to take errands and outings as seriously as the latest ABA therapy technique your child’s therapist has suggested to you. Start early; start young. Know that sometimes your efforts will be for naught, and your trip will absolutely suck. Regroup, ask for help if you can, and try again.
Never give up. Never give in.
Always give it one more try.
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May 23, 2018
In the Moment
As you speedily unwrap and liberate the toy from its imprisoning box your smile bursts forth followed by a deep-throated, fifteen-year-old chuckle (your laugh slays me every time), and your face simply radiates joy. This toy’s predecessor went to “toy heaven” a few months ago after serving us well for thirteen years, had been one of your favorites on and off for over a decade. Your dad diligently found it on eBay which was a miracle, and clearly it was well worth his effort. You follow up this toy with two books you haven’t owned in years because you’ve destroyed the poor things too many times, but since it’s been a while we thought to give you another chance. You quickly turn to the back pages of each and light up Eric Carle’s firefly and let his crickets sing, and once again I revel in your giggle, your ability to live totally in the moment at hand.
Mommy could learn a lesson or two from you.
You are fifteen. You are not talking about driving (thank God!), or a new cell phone, or why your iPad is hopelessly out-of-date. You are definitely thinking about girls as evidenced by your frequent pointing to a pretty babysitter-of-yore in a photo album, a huge grin making it very clear you would like to see her again. You still love your Eric Carle books, Baby Einstein videos, and every once in a while when our guard is down we buy you an old Wiggles DVD that has been (intentionally) lost in the shuffle. You were joyous at your party, even more so the day after when opening your presents from your parents (I believe in stretching out birthdays as long as possible). You were, in those moments, profoundly happy.
Truth be told, I cling to these moments when the going gets tough, and I’m always greedy for more.
Sometimes, the beautiful boy who made me a mom is extremely difficult to deal with. My boy has severe autism, OCD, and lately a diagnosis of catatonia which honestly threw his parents for a loop (we knew puberty would bring something else to the table, we just didn’t think it would be that). We’ve been struggling lately with bedtime which may purely be a function of advancing age, or could be something else. Since the catatonia diagnosis we’ve had regression in several areas of development, which is disheartening to say the least. To tell the truth we’ve gotten used to the stimming and the OCD over the years- watching him disappear in a catatonia episode has been distressing to say the least. We are so grateful with the proper diagnosis he has improved, although I’m told this will never go away.
Kind of like autism. We’re familiar.
Storing up these moments of joy whenever possible has been a trick I’ve used over the years, one that has helped me cope immeasurably. When things get difficult chez McCafferty and I get a moment to breathe I try to recall these times, his elation, the absence of dread. I have found over the years I’ve dealt in dread as much as I’ve dealt in joy with Justin, and I am diligently trying to change that (it’s even one of my New Year’s Eve resolutions!). Stockpiling those moments of joy and trotting them out in trying times restores my sanity, because it reminds me of this- everything with Justin is cyclical. Yes, we are often putting out fires, but there is an ebb and flow to the difficult times, and to date, peace has always returned.
May it always continue to do so.
Recently I celebrated my anniversary, my son’s birthday, and Mother’s Day (yes, I am quite tired). I’ve got good memories for the “bank,” and a reminder to myself that when things fall apart, and they invariably well, they will come together once again. Eventually there will be peace.
And when there is, I plan on being in the moment enough to enjoy it.
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May 14, 2018
Happy Birthday Boy
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.
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May 7, 2018
The Space Between
Dear Moms,
If you’re reading this in your voluminous amounts of spare time, perhaps your son has just been diagnosed at the tender age of two and you’re overwhelmed by where to go next. Maybe your teenaged daughter, whom everyone assured you was just shy, is now sporting the ASD label. Perhaps after years of therapy and (literally) your blood, sweat and tears you are realizing your little boy is destined for the more severe end of the spectrum, despite all your efforts. Maybe your son is aging out of his school entitlement, and your world is now consumed with SSI and guardianship and praying like hell that day program down the road will not only take him so you can work, but that your boy be willing to stay. Perhaps your child has just hit puberty- enough said.
A lot of “maybes” here, but I’m certain of one thing- you are very, very tired.
Maybe you’re not going through a major milestone, but instead trying to figure out how to get him to eat, to sleep, to leave the house without screaming, to stop pinching you every time you need him to make a transition. Perhaps you’re trying to figure out how you can convince a sitter to stay with your five-year-old so you and your significant other can remember why you got married in the first place. Maybe on top of autism and OCD and anxiety your girl has just received another co-morbid diagnosis, and you’re trying and failing to summon up the strength to educate yourself once again on yet another disorder.
Perhaps you just want to scream every time someone tells you they don’t know how you do it, as if you had a choice.
Fifteen years ago this week my husband and I began our own “autism rollercoaster” when our beautiful son Justin was born, a much-wanted and longed for baby. I would start to have concerns about his development when he was just six months old (he hit his milestones but spun everything in sight), would have those concerns validated at seventeen months when he received his PDD diagnosis which would morph a few months later into a plain old ASD label. Five years later our eighteen-month-old son, who unlike his brother had developed typically until then, would regress before our eyes after two back-to-back illnesses, losing his speech, developing a rash all over his body, and most significantly losing the very spark that made him who he was. Over the last decade-and-a-half we have seen our boys labeled with autism, OCD, ADHD, and most recently for our eldest, catatonia. We have endured insomnia, refusals to eat, binge eating, anxiety, and aggression.
Here, it has not always been “good times.”
Having been in the trenches so to speak for the last decade-and-a-half I will share with you that at times I have been depressed because my boys suffered, have been angry at their suffering, and riddled with anxiety over whether I’d ever figure out how to help them be happy. For years at a time I put my own needs on the back burner, living from one potty training incident to the next, measuring my happiness based on how much each child had slept the night before. I had given up my much-loved career when our eldest was diagnosed, and subsequently the boys became “my job.” Quite honestly, their needs consumed me.
I lost myself.
It took me many years to realize that sometimes I needed to put my needs first.
Finally, one day I realized that with both boys our challenges came in cycles. Often we would have periods where things were calm, the boys were happy, and our home life resembled some sort of normalcy that I’d never thought we’d achieve. Of course, you’d think I’d be able to revel in those periods, “the space between” I’d come to call them.
Often, I didn’t. I’d be filled with dread waiting for the “other shoe.”
What I eventually realized was this. This autism gig was here to stay. These cycles would be my constant companions until my dying breath, which hopefully was many, many decades away. No matter how educated I was, how diligent I was, and how good a mother I was, I could not change this incontrovertible fact.
The only thing I could change was me.
It’s been about three or four years since I stopped “dealing in dread.” When one of my kids is suffering, I admit I am not good at compartmentalizing their suffering- I don’t think I ever will be. What I have learned to do is in those calm, quiet periods (and I can’t promise you, but I believe you will have them) is to grab onto life with a tenacious grasp, to take care of myself, to actually have fun. I make those doctor appointments I’ve been putting off for six months. I have lunch with a friend I haven’t seen in a year. I troll everyone I know to help me find a sitter competent enough to stay with my boys so my husband and I can get some relief.
As much as I can, whenever I can, I try to relegate anxiety over the boys’ collective happiness to a shelf somewhere in the remote recesses of my brain. I do this for them, because a happy mom is a more competent mom, and they need me to be that for them.
But I do this for me as well, because I deserve to have a life too.
So this Mother’s Day, and every single day that you possibly can, carve out some time that’s just for you, for your happiness. Perhaps it’s a night out with the girls. Maybe it’s fifteen minutes in the tub while your husband handles the kids.
Maybe it’s just a really good and well-deserved glass of wine in a quiet place. Chocolate helps too.
Try, as much as you can, to find happiness in the space between.
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