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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April 30, 2018
Meet Him Where He Is
Another April 30th, another Autism Awareness Month in the can.
I know a lot of people have an issue with this month, as some feel they are brutally aware of autism 24/7, and I get that. Some have issues with the name of it just referencing awareness, and not acceptance or even celebration of autistic individuals. A few of my friends have had issues with their kids’ private schools asking students to wear blue since it’s “all autism all the time” there, and I can see their point.
The truth is, I pick my battles, and none of this bothers me. Anything that might help a stranger look upon my child with admiration and not scorn is good by me.
This year I’ve focused my writing for this month on caregivers of autistic individuals, and I’d like to wrap up this series with a quick vignette and a shout out particularly to parents whose kids have just been diagnosed (of course if your kid has just been diagnosed you probably don’t have the time or energy to read this, but come back to it if you can).
One of the most difficult things for me about Justin’s autism was letting go of what I thought should make him happy, and embracing what did make him happy. Before he was diagnosed at seventeen months my husband and I bought him all the toys we knew our other friends’ kids had liked, and we waited eagerly to see him playing with them. He eventually did, but not in the way we thought he would. Trucks and cars were placed in careful lines. Toys were rotated and never played with in a traditional way.
Imaginative play was only a dream.
Getting his diagnosis was somewhat of a relief, as now we knew for certain what he had, and we had a game plan to get him what he needed, which eventually resulted in a move north. Our new location afforded him wonderful early intervention services, an excellent education at a school which knew how to care for him, and proximity to family and venues Justin would eventually like.
Notice I used the word “eventually.”
When Justin was younger all he wanted to do was stay in our house and spin things. I pushed him to go on outings- first, it was just walks in his stroller that he eventually began to love. After we moved to the Jersey shore and had access to boardwalks and Great Adventure and beaches (oh my!) I began my quest to acclimate him to these places, to help him with his sensory overload and crowds and waiting on line (still working on that one but it has improved greatly) so that he could have a life outside of our home.
I won’t lie to you- these outings were work, the way that Disney is a working vacation. Some days we only made it to one ride at the boardwalk, or half an hour at the beach. I have little half moon scars all over my body from his protests that it was time to go home- I did not always escape our outings unscathed. After some time and many trials Justin did learn to love most of these places, and I learned to read his needs and create routines to tailor each experience to him so that our little excursions made him happy.
And the key to all this acceptance truly was seeing our trips from his perspective.
Justin will be fifteen in a few weeks. I have it on good authority from my friends with teenagers that their boys are really into girls right now (okay, he may have that in common with his neurotypical peers), that they’re starting to think about colleges, and all are yearning to drive and slough off the shackle of their parents. On the other hand, my fifteen-year-old still loves Baby Einstein DVDs, adores roaming throughout New Jersey on the Midas Rent-a-car site, and thinks YouTube is swell.
Again, he may have the latter in common with his NT peers too.
The truth is over the years I’ve learned to meet him where he is, not where I think he should be. This doesn’t mean that I’ve given up on him, or I don’t wish he would have all those pretty options in his life. I will wish he had those choices until my dying breath (which I’m shooting for to happen at about 120, we’ll see how that goes.)
It’s just that in order to have a connection with my son, and we have a profound one, I needed to pay attention to what brought and brings him joy, and capitalize on that moment.
I had one of those moments yesterday.
Back in the day when I had only one child my mom’s 60th birthday was coming up, so I thought I’d make her a DVD of photos and video clips of her only grandchild. The disc encompassed Justin’s first two-and-a-half years of life, and it was set to songs Justin loved as a child, tunes that held special meaning to us. It’s still a fan fave, and as he has access to it a few months a year I heard him playing it yesterday, his eee’s chiming in with notes from “Somewhere Over the Rainbow” as he gleefully rocked back and forth. I put down my dishwashing (gladly!) and walked over to where he was standing, taking in his ebullient grin.
He stopped rocking, smiled even broader if that was possible, and took both of my hands to dance.
I can share with you that this occurrence does not happen often. In fact, if I hadn’t put down those dreaded dishes I would have missed the moment, as playing the same twenty second clip is much more reinforcing to him in the long run than dancing.
And I am, after all, his mama, not a pretty teenaged girl.
If your child was just diagnosed, I know your world is spinning, and there must be so much you feel you can’t control. If you can, just try to find a moment, maybe it’s only one a day, where you connect on their level with something that brings them joy. If you do that enough you will weave a tapestry of threads that connect you to one another, a relationship you can build upon which will help both of you greatly in the years to come.
We have a profound connection he and I, one I know will last a lifetime because we’ve built on these moments, stretched and elongated them to encompass our love for one another.
Yesterday we had our moment because I met him where he is.
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April 23, 2018
The Other Shoe
His “eees” resound throughout the living room, punctuated by small silences that make me look anxiously toward him and gratefully away as I realize they are just silences, not episodes of catatonia which invade his happiness and enjoyment of life. Since we started a new medication eight weeks ago we have seen a vast improvement in quelling his disorder, starting with near-miraculous eradication of the spells for two weeks, a plateau where they resumed but not with their initial ferocity, and a leveling out that both his school and family can live with on a daily basis. It has been an incredibly stressful six months of first having to diagnose him, choosing between conflicting diagnoses, and then holding our collective breaths and hoping we picked correctly and treatment would help him.
It did. And a half a year and two very tired parents later, we are profoundly grateful.
Justin is almost fifteen, and to tell you the truth I anticipated that going into puberty there would be something (all my friends’ kids have experienced some additional challenge to their severe autism), but honestly, I never thought it would be this. I anticipated aggression, or seizures, or even self-injurious behaviors which he had never exhibited previously, but not catatonia. Frankly the only time I’d ever heard of it was in relation to the movie “Awakenings,” which was a total tear-jerker and sad as hell. I read a lot about autism on various websites, and I was stunned I’d never heard of this disorder that affects between 12-18% of all individuals on the spectrum.
Live and learn.
Although I was prepared for future challenges, I have to admit I was (and am) angry my boy has one more thing to deal with in his life. Quite honestly I feel that dealing with severe autism and OCD are enough to handle, but the universe has mocked me and has other plans, so now we’ve added catatonia to the mix. Since I was anticipating something would rock our world and we’ve now identified it and are treating it you’d think the drama would be over, and it is somewhat. We have a name for what ails him. There are several treatment possibilities should what we’re doing now fail. It should be life back to “our normal.”
You’d think I could say the other shoe has dropped. But with autism, and especially with severe autism or any severe disability, it ain’t over ’til it’s over.
This year I’ve dedicated my writing for Autism Awareness Month to helping caregivers. I’ve spoken about getting the help you need, whatever that may be. I’ve written about the importance of making friends with parents of children with your child’s level of severity. Today I want to talk about how important it is to let the people in your life know the big picture, especially if your child will never live independently and will always need your care, or that of a caregiver.
For years my husband and I didn’t talk about the long-term implications of Justin’s severe disability. I think we kept things close in part to not worry people, and perhaps somewhat out of a fear that if we were “Debbie Downers” people would abandon us. I’m not a big believer in regrets, but if I could go back and change a few things I would have spoken more about the potential and likely trajectory of Justin’s life, just so the people who are important to us could get a glimpse of what his forties, fifties, and beyond will probably entail. For once I recently took my own advice (a miracle!) and wrote a long email detailing Justin’s newest disorder, the various treatments he might have to endure, and even worst-case scenarios. I even explained how having catatonia could severely affect not only his post-twenty-one life, but his parents’ lives as well. I laid it all out there, held nothing back.
And damned if almost everyone responded with kindness and concern.
Of course this response rate is a testimony to having understanding families and my choosing good friends, but this disclosure helps in a myriad of ways. It’s also a dozen or so less times I have to spill my guts and try to make people with no direct contact with severe disability understand how profoundly this affects my family both now and in the future. If I have to cancel a get-together I don’t have to explain what’s going on, or discuss why perhaps I’m just completely overwhelmed and can’t make it that day. This understanding of our situation can help prevent relationships from disintegrating, and help others understand why my stress levels the last six month have been through the roof (my new blood pressure medication can bear witness to that). Quite honestly, it makes it easier for me to ask for help if I need it, as once people get the huge ramifications of what Justin’s experiencing they will probably come to our aide more often if we ask.
And God knows, we can all use a little help sometimes.
I don’t tell everyone the full story. I am careful in who I choose, selecting individuals I know will care and be genuinely interested in what’s going on. Good friends, yes. My dental hygienist in my thirty seconds of speech- not so much. I try to avoid people whom I know will get that glazed look in their eye when I speak about my son. It’s not worth the trouble.
You will find probably find however that a number of people in your life are genuinely interested in your family’s story, and I recommend you divulge away. Let people know what autism means for you on a daily basis, not just how it affects your hopes for your child, but your daily routine as well. If disclosure leads to them asking if they can help, give it a try and let them. Honestly, if they drop you like a hot potato after you disclose they would have abandoned ship eventually anyway. It’s better to cut ties sooner than later.
With many types of autism, there exists the perennial “other shoe.” For my family, the worry will never be over as I strive to outlive my son and know I never can (but I’ll give it my best attempt). If I’ve learned one thing in my decade-and-a-half living with an autistic child it’s that there will always be something, and it may not be pretty. Lighten your load if you can. Speak up when it’s appropriate.
Try to loosen your grip a bit on that other shoe.
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April 16, 2018
Make New Friends
Last night I snuck out of my house on a Sunday night, left the kids to my husband, and had a fun and civilized meal with several of my autism mommy friends whom I’ve known for years.
I know, don’t hate me. It was bliss.
We haven’t had the opportunity to do this in over a year, although we all keep in touch with one another through Facebook or in person. One of these amazing women will have her doctorate in a few months. Another has been an advocate for her son and other autistic people for decades. Yet another runs a bike camp for kids with autism with a phenomenal success rate of independence. All of us save one have two autistic kids each (we are very good at making people on the spectrum apparently). We are all coping in our various ways, optimistic yet realistic about our children’s futures.
We are also all very tired.
For two hours we talked about autism and (amazingly!) other things, just reveling in being with people who “get it,” and not having to fulfill a single mand for a while (my autism peeps get that one). It was a glorious evening despite the weather, and we all vowed to not let so much time go by before the next one.
I know that it is integral to my sanity to have these women in my life, and I do not exaggerate (not even a little).
I’m writing about this today because it is (still!) Autism Awareness Month, and my focus this year is on caretakers remembering they need to care for themselves too. Something I feel that is essential in surviving this autism gig is making friends with other parents of autistic children, and going one step further- making sure you connect with someone whose child has the same level of autism as yours. I have friends whose children are on the same end of the spectrum as my high-functioning child, and our conversations are necessary and yet bear absolutely no resemblance to the ones I have with my friends whose children reside on the more severe end of the spectrum. I’ve found I need both perspectives to glean advice, vent, and have a conversation with someone who comprehends the long-term ramifications and the logistics of what I’m discussing regarding each of my sons.
Plus it is exceptionally fun to have at least a couple of people in my life I don’t have to explain every single detail to. It leaves more time to eat and drink wine.
Whether you’re just starting out on this autism path with your child or you’ve been in the trenches for a decade or more, try to make those connections. One of my sons is still friends with a boy we met in pre-school (I am tenacious in my relationship-building). Back in the day when my kids were little I often signed them up for events with our local autism organization, and I met a number of parents there. One I met through a contact who thought she’d be a good person to speak to regarding our school district, and although I can’t remember who set us up I am forever grateful we connected. With my more high-functioning kid I made friends through volunteering at school and in cub scouts. Sometimes a special education PTA meeting is a wonderful place to forge those bonds- even if your town doesn’t have one the one a few towns over might. My kids’ hairdresser wouldn’t let me leave the shop one day until I cold-called a woman who also had autistic kids (trust me, major eye rolling ensued on my part) because she insisted we had to become friends, and she was right.
I even inappropriately befriended all of my son’s early intervention therapists. Hell, they were always at my house anyway.
It will take time (which I know you don’t have) to build these relationships, but I cannot stress enough how integral they are in both helping your child and helping you. No matter what stage your child is in you need a sounding board, someone who can help you make connections to assist your child, and/or hopefully someone who just knows how to listen, won’t make suggestions, and just lets you vent.
Sometimes having the latter is imperative before you can even attempt the former.
If you’re just starting out on this autism journey I know you’re probably scared, overwhelmed, and of course, more than a bit tired. Try to reach out if you can and make friends. It will help alleviate your fears, reduce your stress, and benefit not only your child but you too in the end.
Plus, it may actually end up being fun, and I’m guessing you could use a little fun right about now.
Find that person who’s a good fit for you and reach out. If that doesn’t work, try another. Pretend it’s high school (God forbid!) and you’ve got to just keep going until you find your niche.
It will be worth it, I promise.
Don’t give up.
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