April 24, 2017
Dear Future Daughter-in-law,
For the record, I’m planning on still being around when my son marries you, but I was pretty damn old when I had him and I’m a “planner,” so just in case I thought I should write down a few things I had to say to you.
First of all, and I hope you know this already, you hit the jackpot.
I know, you’re probably thinking this is just the opinion of a loving mom, but honestly, you have. You see, since the age of ten our boy has been talking about getting married, settling down with his four or five kids (yup, hoping you two make some money,) and being totally devoted to the person he presently calls his “soul mate.”
Trust me, your man is not a player.
If you’re planning on walking down that long aisle with him I’m assuming there are some things about him that you already know. Clearly, he’s handsome (yes I’m biased,) intelligent, and funny. He loves technology and little kids (he begged me for a little sister but the store was closed.) He is passionate about everything he is interested in, and that includes you and your future progeny. He can’t cook but he cleans up after himself (you can thank me now.) He loves you fully and utterly, your perfections and your imperfections equally. Frankly, he is a catch.
He is also mildly autistic.
I don’t know if this has caused you any anxiety at all, but I think we should talk about it. When our boy was little he definitely struggled with his disorder. There were sleep issues (a gift to his entire family,) eating issues, and some anxiety about the world around him too. Just know that me and your future father-in-law and about a million other people worked our butts off to help alleviate these problems (yup, you can thank us again,) all of which eventually resolved themselves with time. With hard work on his part, and equally important, maturity, he evolved into the confident, kind, amazing adult that he is today.
He is still autistic. He’ll never “outgrow” it. And for him, it’s been a gift.
Honestly, if any other parents ever read this missive there may be some eye-rolling at my last statement, but it’s true. Granted, in his early years I needed a lot more chocolate (and wine) to get through the day sometimes, but the difficulties presented by his autism were more than outweighed by the abilities that came with it- that prodigious memory, his his ease with reading at age three, and his unique world view which continues to surprise and delight those around him even now. I literally can’t separate him from his autism, and I wouldn’t want to try.
And I hope, if you love him as much as you say, you love all of him.
There’s a saying that when you get married you marry the family too (so true by the way, an aphorism right up there with “It is what it is” and “one day at a time,”) and I know you might be a little concerned about your brother-in-law, who is severely autistic. I want you to know that your man told me very clearly at age nine that while he loved his brother he didn’t want to take care of him when he grew up because he was a lot of work (yup, he’s perceptive too.) His father and I are planning on never having you two take care of him in-house. That said, I hope you’ll respect him and check up on him, and hopefully love him too. Because the truth is he is eminently loveable, and has been instrumental in teaching compassion and kindness to the father of your future children.
Yes, I know I’m laying it on thick here, but I really love this particular kid too.
You may also be worried about your kids being autistic, and I think we should talk about this too. They’re still figuring out the causes (I’m hoping if I make it to one hundred they’ll have it figured out, it’s a goal,) but genetics definitely plays a part. If you look at our boy’s family tree there’s enough quirky but bright individuals to lead me to believe that genetics is in play for this family, and I know this may concern you.
I know it concerned me when I was pregnant with your boy.
The truth is hon, while your chances of having a kid on the spectrum may be elevated, there’s a chance that even if he was in the “neurotypical crowd” you two would make an autistic kid anyway. The truth is life is full of surprises, twists and turns. Having two autistic kids was definitely not in my life plan (understatement,) but it happened, and your father-in-law and I handled it. I won’t lie to you. Some days, it sucked. There were times when they were young that we were literally hanging on hour to hour, wondering if things would ever get better, looking for help (hence the wine and chocolate.) Sometimes, if I’m being quite honest with you, our home life was brutal.
But the truth is, we got through the dark days, and both kids grew to be immeasurable easier, and so did our lives. I wouldn’t go back to those days for any amount of money (hell no!) but I will tell you they made us stronger, and made our marriage stronger too. Having autism in the house made me more compassionate, and definitely more patient (a struggle for me.)
And I promise you this. I will always be honest with you about autism, and anything else.
I want you to know if any of your kids are in the “autism club,” me and your father-in-law will be there by your side through everything. We will help you.
Maybe even more importantly, we will get it.
You two will not be alone.
I can’t tell you how happy I was when our boy told me he put a ring on your finger. You are kind, compassionate and loving, you “get” our boy, and most importantly, you make him deliriously happy.
Which makes me deliriously happy too.
We love you.
We’re thrilled you chose our boy to love.
Welcome to our family.
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March 31, 2017
This coming Sunday is the tenth official World Autism Awareness Day, a day in which I could tell you I’ll be “lighting it up blue” or spreading awareness, but in reality I will be severely jetlagged in Ireland and hopefully putting autism on a shelf for a week.
Really, I’ll still have fifty-one weeks and thirty more years to think about it.
In the past nine years I’ve written at least one missive about the day each year, discussing my eldest son’s burgeoning awareness of the world around him, and my youngest’s awareness that he has autism too. I’ve talked about our path from awareness to acceptance and even to celebration (yes, some of you are rolling your eyes, but reading at three and insane organizational skills are the yin to many a yang). I’ve written about how much Autism Speaks has helped us, and how passionately I feel about the boys’ collective progress.
When it comes to autism, there’s always a lot to write about.
When the boys were little, our world was very small. Truth be told I only worried about what was happening in their world, was truly just trying to get through the day, or sometimes the hour. There was no global autism awareness chez McCafferty.
But I’m happy to tell you now, with my kids at ages ten and almost fourteen respectively, there’s room for what I call the “big picture.” Here are some things I’m aware of this World Autism Day.
I’m aware that my eldest, severely autistic and non-verbal son continues to make progress every month of his life, and his courage astounds me.
I’m aware that my youngest has exceeded my expectations in what I thought he’d achieve, that he is “living his dream” as he is fond of telling me.
I’m aware that some days at my house are so difficult they’d never make it on a reality show.
I’m aware that some of our moments are so filled with love and promise some people would not believe I have two autistic kids.
I’m still aware that Betsy Devos needs to brush up on IDEA.
I’m aware that the Supreme Court is my new best friend with their latest ruling on the court case which hopefully redefined a “fair and appropriate education” for generations to come.
I’m aware that I’m nowhere near as patient as I often need to be.
I’m aware that not beating myself up about it is key, and I’m trying my best not to do that.
I’m aware that I will never be at peace with leaving my son for half his life here without me.
I’m aware that my other son will most likely “flee the coop,” and for that I’m eternally grateful.
I’m aware that I need massive quantities of chocolate to get through my day.
I’m aware that sometimes wine is needed to accompany that chocolate too.
I’m aware that this life, both for me and my kids, is sometimes grueling, beautiful, stressful, fulfilling, annoying, and miraculous, all at the same time. I’m aware that autism is not completely gloom and doom, nor puppies and rainbows either.
I am aware of the patience and consistency and boundless love from several villages of people that go into raising my kids.
I am aware and am so grateful for everyone’s contributions, and for my kids, just as they are.
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March 20, 2017
My husband Jeff and I have two sons, an almost fourteen-year-old and a ten-year-old, both with autism. My eldest is on the more severe end of the spectrum, and also has a diagnosis of OCD. My youngest is on the milder end, and has a secondary diagnosis of ADHD. For the most part, they are both happy, successful in school, and the two most loving children any parent could ask to raise. At this point you may be rolling your eyes, or maybe you want to know our secret. Friend, I’m going to tell you. Ready for it?
It’s simply this- get them out.
If you’re reading this with an autistic toddler clinging to your leg because you have the audacity to want to put him in the car for a ride to the park, you may not feel really receptive to this advice. I know, and I get it- I was you twelve years ago. The first year Justin screamed any time we put him in the car (turns out he hates facing backwards, at least that issue was solved on his first birthday,) so outings were fraught with trauma before we even went anywhere. The only time he didn’t cry when we left the house was when I put him in his stroller and took him for a walk, which in Virginia meant several months in summer or winter where that was impossible. I remember thinking at one point that a person who weighed less than my left thigh was keeping me prisoner in my own home.
Yup, the left one’s bigger than the right. Must be a running thing.
After a period of time where I truly felt I’d entered a witness protection program I decided our strict quarantine had to go, and we began our ventures out. I chose our local mall as our battle ground because we could ostensibly go there year round, and at the very least I could attempt to get a drink at Starbucks.
I have my priorities.
At first Justin hated every aspect of our “stimulate the economy” excursions. Knowing this, I started small. The first time we went I just drove him to the parking lot, parked, then went home. The next time we made it to the stroller, and to the closest mall entrance. The next time, we made it inside for one grand loop of the first floor.
Eventually we even conquered elevators. It was a momentous day.
The mall taught me a lesson I applied to many more situations with Justin, and eventually with my younger son Zach when he was diagnosed. Something in me knew that the more times I got out with them when they were younger, the more they’d get used to trying new things. The first time Justin sat on a horse he whined and protested the entire fifteen minutes around the ring. Something inside me told me to pursue this, and while the first month of lessons were hell, nine years later his half hour on a horse is his favorite thing of the week.
It’s one of my favorite times too. It feels like victory.
Of course, exposing my boys to different opportunities is far from the only reason they’re mostly happy in their environments, and usually open to trying new things. Both boys have had years of special education instruction, occupational therapy, physical therapy, and speech therapy. My eldest has had a private ABA tutor since he left Early Intervention. My youngest is on the “autism diet,” which we think helped him immeasurably. My husband and I have tried our best (and not always succeeded) to be patient with them, and we’ve had help from family and friends.
It takes several villages to raise two autistic children.
There have been many factors that contributed to who they are today, but I truly feel that getting them out young ans conditioning them to the community is one of the biggest reasons they’re mostly at peace with themselves and the world at large. It wasn’t always easy. I have tiny scars on my shoulders where Justin’s teeth expressed their displeasure at having to wait on line at the boardwalk. I distinctly remember packing a young Zach up one morning five minutes after we’d made it to the beach because a fly landed on his foot, and he became hysterical.
All good times.
But we perservered, and now my sons have many more options on their life menus. It’s still difficult to keep my son at a relative’s house for more than two hours- we often end a visit with my boy unceremoniously dumping my purse on my lap so I’ll take him home. He has severe autism, so sometimes there are limits to what we can do. I’ll admit I held my breath when we took him to Disney four years ago, but darned if the kid didn’t make it almost eight hours each day in the park.
Given how expensive those ticktes are, I can honestly say those days really were magical.
Whether your kid has just gotten a diagnosis or you’re a few years in, don’t give up on getting him or her out in the world. Ask for help anywhere you think you can get it. If a random neighbor offers assistance, have her accompany you somewhere so you have an extra pair of hands. Even if the outing is a disaster wait a while and try again- I can’t tell you how many times I attempted a trip with Justin that at first made me long for a glass of wine but eventually ended in triumph. Make sure you have a plan B and C for every time you venture out, and if necessary, try your trip in segments so that your child becomes accustomed to where you’re going.
Don’t give up.
Just get out.
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March 6, 2017
I know. You’re in the middle of what’s been called “siege mode,” and it’s hell. You don’t know if your son will survive it. You don’t know if you will pay enough attention to his little sister ever again. You don’t know if you will survive it.
You just want your life back. Even with autism, there is a “normal.”
Things were going pretty well. Maybe you’d heard a few words recently. Perhaps a good school report came home, another positive one in a long string of happy days for your daughter. Maybe your five-year-old son has been sleeping through the night for months. Your daughter ate a vegetable, kept it down, and the apocalypse did not occur.
Maybe you let your guard down, just a little.
And then one day, it happened. Just the once. Maybe you watched in horror as your son banged his head upon a wall. Your daughter, who’d been sleeping like an angel, was up half the night. Your son pinched you hard for the first time in six months.
You’ve told yourself the behavior is just an anomaly, an outlier of autism. You tell yourself it won’t rear its ugly head again.
Except, it does. And it decides to stick around.
Whatever it is, the head banging, the pinching, the lack of sleep, the aversion to ever leaving the house, it takes up unwelcome residence once again, or perhaps this behavior is new. By now you know the drill. You consult your son’s behaviorist. You talk to your daughter’s neuropediatrician about upping her meds, or perhaps going through the long waiting period of a new one. You go online. You talk to your “autism friends.” You argue with your husband about how to make it stop.
You know you’ve conquered other extreme challenges in the past, but this time, you are tired.
You are always so damn tired.
I know you’re tired, because I’ve been there too.
It took years before my eldest son, who is severely autistic, learned how to sleep through the night, but when that one was conquered, it finally stuck. We had regression after regression with potty training, but by age six accidents were few and far between.
One day I even got him to trade some carbs for salad, and lightning did not strike.
The aggression comes and goes, but for the last few years, thankfully, it’s mostly quelled. The OCD, his companion diagnosis, well we view that as another permanent resident, our third child. We’ve just come through a particularly difficult stretch of two years, enduring a myriad of behavior plans and multiple medication attempts. Finally, we hit the jackpot. Finally, he stopped organizing every non-bolted-down object in our house in his unhappy and frenzied attempts to impose his order on everything, and we saw our predominantly happy boy returned to us. Finally, my husband and I began once again to breathe.
Finally, we returned to “our normal.”
Right now, I know you’re in the throes of it. You want so much to help her, but you’re not sure you ever will. You’re exhausted. You’re resentful. You’re guilty about being resentful.
You just want it to stop.
People will ask you how he’s doing, and you find it easier to plaster that smile on your face and say “he’s fine” rather than trying to describe his newest obsession. You just can’t explain to a mom of a typical kid how much your heart is hurting for your daughter. You continue to work, or volunteer. Even at your breaking point there’s still laundry to do, meals to make, errands to run. You put on a smile when you run into your other child’s teacher at the grocery store. You try not to fight too much with your husband. Sometimes, you feel like giving up.
I am now the mom of a severely autistic thirteen-year-old, and even after almost a decade-and-a-half of living in autism land I’ve seen few things that universally affect all families. Perhaps the only thing everyone agrees upon is that Early Intervention helps.
That, and getting your autistic kid to sleep is a win-win for all.
But I’ve seen this in my own home, and in my friends’ homes. I’ve heard countless stories of acquaintances’ autistic children, and read my favorite bloggers’ posts online. There is, perhaps, one more universal other than early therapy and unconsciousness.
Most of the time, behaviors come and go in cycles.
I’ll say it again. Most of the time, the behaviors come and go in cycles.
Often, with patience, time, the right therapy, the right medication (or all of the above,) we can help our kids. We can alleviate the most egregious symptoms of whatever is causing them, and us, such torment.
We can return to our normal.
So wherever you are in this latest siege, don’t give up hope.
Maybe it’s been a few weeks. Maybe it’s been months.
Maybe it seems like it’s gone on forever.
Take each challenge one step at a time. Rally all your resources. Ask for help. Remember to take care of yourself.
Again, remember to take care of yourself.
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February 27, 2017
I stretch luxuriously on my couch, book finished, contemplating my next snack as I lumber to my feet. I do a mental check of my children, know my youngest is wrapped in a cocoon of blankets on the couch in the other room also reading a good book, and hear the happy “eeees” of my eldest as he revels upstairs in the computer games he loves. All is well in the McCafferty household.
All is well, and on a weekend I’ve managed to spend an entire hour reading a book. Definitely time to celebrate with food.
There was a time in the not-so-recent past (hell, two months ago) that getting an hour of free time with my kids around would have been a pipe dream not to be realized. My eldest son has severe autism and moderate OCD, and for a good portion of the last two-and-a-half years either my husband or myself actually had to be in the same room with him at all times to make sure his compulsions didn’t end up with him hurting himself, or more likely, inadvertently destroying something we really didn’t want to replace.
He’s always shown signs of OCD in addition to the “normal” perseveration that autism brings, but when he turned eleven, and puberty came to call, his symptoms worsened. So began a more than two year attempt (including a stellar BCBA and a number of medications) to help him quell the obsessions that made him so unhappy, and quite honestly, wreaked havoc on our lives.
In December (right before the holidays, the Christmas miracle!) we hit the jackpot with not only the right med but the right dose. The OCD is still there, but it no longer takes over his life, robbing him of the things he enjoys. It was truly the first time his father and I felt we could breathe in a very long time. Our son changed into a much happier person, once again the loving, affectionate bright-eyed boy we knew.
And if truth be told, I realized that during this latest long “siege,” I’ve changed too.
Justin was diagnosed with PDD at seventeen months, which was incredibly early thirteen years ago. Honestly, I think I knew he was autistic at six months- the spinning of everything he could get his hands on, his aversion to even leaving the house (or being out of my arms), his reflux, his inability to sleep, and his general discontent with the world were clues to me that something was different about my boy’s development. I brought up my concerns to our pediatrician who took a wait-and-see attitude, given both his young age and my husband’s own not-so-typical development. In my mother’s heart I think I knew however, and sadly, what I mostly remember from his six-month-mile-marker to his seventeenth month was a feeling of overwhelming dread.
At sixteen months, at a sick visit, our pediatrician shoved a bunch of articles with the word “autism” in the titles into my shaking hand with an admonition to see a developmental pediatrician, and practically pushed us out the door. I can remember driving to the pharmacy to fill the prescription for yet another round of reflux, can recall my trembling hands as we sat in the parking lot, my son making his discontent known, then calling my husband and my mother. I physically had to tell them, couldn’t even wait until I turned in the scrip and drove the few short blocks to my home.
The truth was, underneath the despair, the “how can this happen” to the boy we’d endured multiple IVF cycles and several miscarriages for, was a thin sliver of hope.
Now his spinning, his insomnia, his out-of-sync behavior had a name. Now I could do something. Maybe I could help him to enjoy the world just a little.
And over time, with a gazillion hours of therapy and a lot of love, he did.
During the last thirteen years we’ve encountered many different challenges with Justin. The first time he slept through the night he was almost a year old. The projectile vomiting from his reflux followed us well into his third year despite medications, a diet change, and visits to a gastroenterologist. Potty training was a two part battle that was truly only conquered over a year after we started. On and off over the years our boy has been aggressive, sometimes without any discernible reason why. The OCD has been a constant challenge, as is going anywhere for more than an hour or two without our son wanting to return to the sanctuary of our home.
My husband and I addressed these issues one by one as they occurred, and I’m happy to say my now teenager is one of the happiest people I know. He loves school, loves his horseback riding lessons, loves his pretzels, loves his life. He still pinches us on occasion. The underlying OCD I believe will be his constant companion until death. We still struggle to get him to stay more than two hours anywhere other than Disney or Great Adventure (he has great taste.) In short however, we’ve been able to get him to change many of his behaviors, which has benefitted not only him, but our family too.
But the truth is, as I look back on that tired, devastated mom in the parking lot of a pharmacy thirteen years ago, I wish I could tell her to change her behavior too.
Back in the day, when Justin’s suffering was most acute, I took everything to heart. I made his chicken nuggets from scratch because he didn’t like any of the four gluten-free options I’d offered him. I did at least six hours of therapy a day with him for a year-and-a-half because Virginia’s model of Early Intervention was pathetic, and autism therapies were not covered under our insurance at that time. I often cried when he cried (which was pretty much all the time). I made everything “life or death,” forsaking fun, not taking care of myself, always stalked by worry.
I looked at his autism like it was a sprint, when in reality it is a marathon.
There wasn’t one day or one particular event where I knew that my son would retain the severity of his autism for life. It was a gradual “knowing” for me, one without the sharp despair of articles thrust into my hands, or even the relief the diagnosis given by our kindly developmental pediatrician brought us. At some point, I just knew. And I also knew I couldn’t continue at this crazy pace anymore, that an hour less of therapy every day would not make the difference for this boy as to whether or not he went to college, got married, or lived an independent life. These milestones were not to be his. I could not change this.
I could only change myself.
And I did. I began exercising again, eating healthier, taking breaks. I got a babysitter once a week and just plopped in our local Barnes and Noble and read non-autism related books. I stopped most of my internet searches. I began seeing friends again, and even attempting a few play dates here and there. I realized that autism is cyclical- that there will always be “something,” just that that “something” will change over time. I began to breathe again.
I began to live.
When there are “lulls” like we’re in now I enjoy every moment, try new things with Justin, get out of my house more. I know difficult times are likely to return- I don’t delude myself about that.
If I could go back to that parking lot or counsel any parents new to the diagnosis, I’d tell us all this. There were many dark years, yes. But even during the most difficult times there was progress to cling to, a smile to cherish, my boy’s indomitable love for us on display. With years of hard work, persistence, patience, and love, things did get markedly better for our family.
And I can’t promise you this, but they may get better for you too.
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February 21, 2017
We turn into the driveway of the church parking lot accompanied by the slight whine of discontent of my eldest son, who I am certain would rather skip this detour and head for home. My youngest is peppering me with questions- “Mommy, what year did you and Daddy get married?” and “Was I here?” (nope, not even close), and with his usual enthusiasm he embraces our little side trip, eager to see inside the place where it all started.
We get the kids out of the car and bundle up against the frigid, windy day, hiking up the hill to the small white building waiting for us, explaining to Zach that most likely it will be locked and we’ll only be able to peek in the windows. I share with him that many of his relatives are buried here and he immediately wants to see them, but Justin once again makes his displeasure known and I continue to hustle them up the flagstone path.
It is closed to us as we expected, but I am able to point out where my fiancé and I stood to make our vows to one another, am able to show him where his relatives sat, how solemn and beautiful is this sacred space. Just as we are about to turn away the minister hails us from down the hill, and as he approaches we tell him we were married here and ask to go inside.
Luckily he has the key, and after a short lecture about the history of the church we are left to roam. Justin settles himself in a pew as my other son and now husband wander around, and I step up to the altar where I stood twenty years before, my thoughts turning back to the joyful life I’d thought I’d lead. I’d believed it would transpire in DC, with a career that would progress from teaching to administration. It would include two kids sometime down the road, and hopefully some continuation of the path we’d built for ourselves which included travel, friends, and all the culture the nation’s capital had to offer. My vision was of a simple life filled with love, family, friends, and laughter, nothing extravagant.
Things didn’t quite turn out as I’d expected (understatement of the century).
We did have those two fabulous kids, but the career and DC were shelved so that I could do thirty hours a week of therapy with my toddler and the location shift was for better services and to be closer to family. After fifteen years in Virginia we had to reinvent ourselves in New Jersey, living not far from my old stomping grounds but far enough to have to start over.
Frankly, nothing worked out as I’d planned.
My Plan A was shelved for Plan B (and honestly C and D often came into play too). I traded working and mothering for hours on the floor begging my eldest boy to make a sound. I relinquished Mommy and Me to navigate the murky waters of Virginia Early Intervention. Playdates in the park were put aside for training sessions, internet research and making gluten-free chicken nuggets from scratch so my eldest son would eat.
The landscape of our lives looked nothing like I’d thought it would.
Two years after relocating, after a year-and-a-half of the absence of all the signs of autism our eldest had displayed we watched our youngest regress, relinquishing his precious words, losing the light in his eyes. This time at least we had help, and I reveled in the novelty of having trained personnel to help me coax my son back, praying to see his ebullient soul once more.
In time, he returned, altered, but still irrevocably, beautifully, him.
If anyone had told the girl standing so expectantly at that altar that at fifty she’d be a stay-at-home mom with two autistic kids living large in the Garden State, I’m sure she’d have laughed.
You see, that so wasn’t the plan.
But we all know the saying about the best laid plans.
My husband and I now have two autistic kids in double digits, one who will need lifetime care, and one who will care for himself.
Between the two boys together we have endured their insomnia, sensory issues, and aggression.
We have seen milestones quite different from the ones we expected achieved and celebrated, and have learned to let others go.
We have witnessed the loss of language, and its heralded return.
We have watched with almost unbearable pride how our boys have mastered many challenges, both with strength, and grace.
We have held each other and cried from fear for their futures.
We have held each other and cried tears of joy from who they’ve turned out to be.
This life was most definitely not the plan.
But there is beauty here, and solace in the sanctuary we’ve been able to provide the boys so they can become their best selves, whatever that will be.
There is still family, friends, and laughter.
There is love.
I turn to embrace my son as he leaves the confines of his pew, and for this former blushing bride, it is enough.
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February 13, 2017
It came home in your folder today, the flyer with the fun graphics from your even more fun teacher touting “100 Day,” where you are supposed to dress up like a centenarian. Within minutes I am rifling through your closet for a button down shirt and a tie, combing your dad’s closet for a suitable hat. You approve your future garb and I put it aside for the next week, moving on to more important tasks like feeding my always-hungry boys, one mildly autistic and one not-so-much, and for a time, the celebration is forgotten.
Later, as I’m washing my hundredth dish that day, I do the small amount of mental math I’m still capable of doing. Living to one hundred gets you to 2107. Realistically, at that point I will have been gone for more than half your life.
As I think of how much you still like to snuggle with me it seems impossible that there will come a day I will no longer be with you.
My goal is to remain alive and cognizant until you’re fifty, a goal which I try to attain by regular check-ups, exercise, and (sort of) limiting that wine intake. My mind stretches out over the next four decades of your life- I hope there is a lovely wife, at least a few of the five kids you’re planning on (remember hon, they’re expensive), friends, a career and independence. If I blur the edges a little I can envision you as a husband, a father, a grandfather. I think how much your boundless enthusiasm for life and your eclectic interests will make you an interesting dad and grandad, how I hope these children I may meet when even walking is a challenge will appreciate you.
I know I do.
Of course, I can’t help but let my mind wander to your older brother being a hundred, and since at least on my side of the family our relatives live a ridiculously long time, that goal may be attainable. I’m hoping to make it to fifty with him too, see him settled in a good group home near his sibling, enrolled in a day program he loves, somehow able to get to those therapeutic horseback riding lessons he adores. I envision there will be frequent visits from his mom and dad (if we can still drive), and that in his own way he will one day be independent of me, although never independent of others.
And that’s where the anxiety creeps back in. I just can’t envision getting him from fifty to death without me.
I’ve written before about him making it to eighty and me to a hundred and sixteen, holding hands as he takes his last breath and I follow along behind him. Rationally I know this won’t happen (even giving up more wine doesn’t make that attainable), but God, I wish it was.
I brought him into this world, and with his need for constant care, I wish I could see him out.
I’m hopeful he’ll have his little brother to look in on him, but I know he’ll be busy with those five kids. They do have a bond between them but I can’t say they’re close anymore. When they were both little we could engage them in games together, but as Zach shed rolling balls back and forth for Star Wars trivia the gap widened, only to be truly breached at bedtime with our communal songs. I am certain my youngest will one day be busy with the trappings of a more “normal” life, may not even live near his brother.
It breaks my heart to think that one day you will be surrounded by people who may like you, but don’t love you.
Even as I pen these words I know for me they’re hypocritical. Although I’m a stay-at-home mom I’ve always been the first to tell friends that day care is not the devil, that there was no difference in the emotional stability of the three hundred kids I taught who’d had outside care or had been home with a parent. Kids need love yes, but maybe they don’t need to be enmeshed in love every single second of their day. Justin will be an adult when he enters a home, will have had decades of love and hugs by the time he moves out. Intellectually, I believe he will be okay.
But this quest for hundred year old garb has made me wonder about his future.
Who will take him to the successors of his fancy neurologist to make sure his meds are right?
Who will remember to spend extra care flossing that gap between the two teeth on the left hand side of his mouth?
Who will schedule (and dear God, do the prep work) for his colonoscopy?
Who will cuddle with my seventy-five-year-old and read him an Eric Carle book (I can guarantee he’ll still want that).
Other than his brother, who will love him?
How do I exit from his life? Do I spend every last possible minute with him, or fade out slowly as it becomes apparent that my time is drawing near?
Hell, will I even have a choice?
When I’m gone, will he miss me, or will the differences in his brain allow a quick fade of attachment?
Yup, being selfless for a moment here, I’m hoping for the latter.
Things have improved lately chez McCafferty. After a long bout with extreme OCD my son’s obsessions seem to have been quelled somewhat, giving us a more “typical” life at home, for which my husband and I are extremely grateful. My youngest is thriving.
We are a happy family. I am happy.
But I share with you that for any family looking toward the future with a severely disabled child, there is always that unknown of what’s to come lurking there, obdurate in its tenacity. Even on a good day, and there are many, my concerns for his future are always with me. On most days I’ve shelved this worry for my sanity, but I know it will always be there. It is perhaps the one thing I am certain of with this life.
And if I make it to one hundred and I still know who I am, I’ll carry it with me too.
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January 30, 2017
Finally, a chance to breathe.
I know. It snuck up on you, didn’t it? It came to call after you’d gone through the eight million Early Intervention appointments and put his program into place, or through the six thousand evaluations that led to services at a school you hope is more than just “appropriate” for your daughter. You know about the “A” in FAPE because while not doing therapy, laundry, or taking your child to yet one more evaluation you’ve scanned the internet horizon like an eager addict, hoping for that next great hit that might somehow help your kid.
The diagnosis was difficult but at the same time energizing- the differences in your son have a name, and now you can do something, which cut through that insipid dread that’s been following you around like a remorseful ex. She’s on the “autism diet”, you’re giving her supplements, you’ve explored safe alternative treatments and made a plan to try a few. Her therapists and teachers are in place, you’ve even found a sitter you like so you can get the hell out once in a while. You’ve dotted your “I”s and crossed your “T”s, and today you find yourself for the first time in a very long time with a couple of hours to yourself. And it hits you, how you’ve put wanting to know your child’s future on a shelf so you can function. You know that ironically all your efforts haven’t been the hardest part- that’s still to come.
Now, it’s time to wait.
You may or may not be like me, a planner extraordinaire, which served me well as a former educator and even better as an autism mom. I admit I struggle sometimes to remain in the present, am always thinking a few steps ahead. You’re realizing you can’t really look that far down the road because he’s changing every day, making progress, sometimes taking two steps back. It’s too early to know if your eighteen-month-old son or four-year-old daughter will ever drive, fall in love, live safely and independently apart from you.
But still, you want to know.
Some people will tell you what you want to hear. They will compare your beautiful two-year-old boy to their second cousin’s boyfriend’s neighbor’s son who was non-verbal and is now at MIT. They will tell you about their other clients who present just like your daughter who are now fully mainstreamed, talking, and have friends. They may not be so positive, as in the case of my eldest son’s former therapist who laughed when I suggested he’d one day read. At the time, he was two years old.
He was reading complete sentences by four. And yup, still severely autistic.
There is no crystal ball you can look into for these answers, although you’d bargain your life for one. There will probably not be a single, defining moment like that one at the doctor’s office with the annoying florescent light bulb that will change your life, where you will know what the future holds for your child. You won’t know for years if your child will ever speak because sometimes it just happens as a teenager, along with all those changes typical kids go through too. If your child is in a self-contained class in kindergarten you won’t know if he’ll keep that placement forever, or one day shed his IEP. You won’t know if he’ll ever eat a vegetable.
Fortunately, some things aren’t as difficult to wait for as others.
You won’t know the answers to the big questions now, but I promise you someday you will. It may come gradually over time as it did for me with my oldest, realizing after years of intense therapy that despite his inherent intelligence he’d always need care. It might come in a watershed moment like with my youngest son, where his beloved pre-school teacher suggested he’d benefit from a partial day mainstreaming in kindergarten without an aide, citing the astounding progress he’d made in two years at such a young age.
And for the record, my sons are two of the happiest kids I have ever met.
No, for now you have to wait, and it’s hard, so hard. Waiting will lurk in the corner with you like that person you should really unfriend on Facebook, relentless in its tenacity. If you let it it will consume you, rob you of the gift of the present, insinuate itself into every corner and crevice of your life until the waiting, the not knowing, is all-encompassing.
Don’t let it. Don’t let the waiting, the worry, the anxiety envelope you if you can help it. Revel in what he’s accomplished, hell revel in what you’ve accomplished for him. Relegate the future to a back shelf, somewhere cluttered enough that you can’t spot it easily, and take everything day by day. So much will change over these next few years- struggles will be conquered, new challenges will present themselves. A goal you never thought she’d attain will eventually be met. Others you thought were so important will go by the wayside, and it will be okay.
You have the power, with how you choose to perceive things, to view this life as okay.
Know you never have to wait to share in this vibrant, caring community.
You are not alone.
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January 23, 2017
I am overwhelmed.
I know, I usually write fairly positive missives about our family’s life with autism, but right now, at this moment, as I’m thankful I’m not outside on this blustery Monday morning, I am overwhelmed.
I am overwhelmed at the enormity of decisions that will be made this year and the impact they could have on my severely autistic son’s life.
I won’t make this a long political rant- there are other bloggers who can do this much better, and I know my readers are informed, so I’m preaching to the choir.
But there’s this- Endrew F. v. Douglas County School District RE-1, where the Supreme Court will probably be ruling this spring or summer as to what the “A” (appropriate) in FAPE means, i.e. whether or not special needs children deserve the right through IDEA to services which provide “some” educational benefit, or something more meaningful.
And there’s this- Betsy Devos’s terrifying unfamiliarity with IDEA as a federal law. Good Lord.
And there’s also this- the devastating rules and regulations proposed by the NJ State Board of Education and the NJ Department of Education which, if imposed, could close many of our state’s much needed private schools for children with disabilities.
Including my son’s.
And last, just for fun, I’m worried about Medicare and Medicaid too. Why not throw one more thing in the mix?
I will tell all of you straight up that I never take IDEA, the continued existence of my son’s school, his district’s decision to place him there, or his ability to behaviorally keep his placement for granted. I’ve written posts where I’ve thanked disability parents “of yore” for the creation of IDEA. I’ve written posts to the founding families who brought my son’s school to life through their hard work and dedication. I’ve thanked my son’s school personnel for being so on top of any rule or regulation that might compromise their ability to stay open. And I am grateful, eternally grateful, that through behavioral strategies, medication, my son’s teachers’ expertise, and hell, love and luck, my boy is able to thrive in the placement that has become his second home.
I am gratitude attitude personified.
I know twenty-one and beyond brings its own landscape of troubles. There is not a day that goes by that I don’t hope desperately that my beautiful boy will find an appropriate day program that he loves, activities he adores that will grow with him into adulthood, and most importantly, when it’s time, a residence where he’ll be happy, and safe. I know I will most likely struggle and fight to have these dreams come to pass. I know it won’t be easy.
But I no longer feel relatively safe in our little pre-twenty-one cocoon. There have been days in the last few weeks where I longingly envision signing that last damn IEP, knowing at that point my son will get to stay in the place that he loves until he reaches drinking age. There are days that I long to know I’ve done it. To know that his school’s done it. To know that his sending district’s done it. To know that IDEA’s done it.
To know that he’s done it.
I’m already planning on having a post-signing party. There will be wine and dancing. And chocolate.
Despite being overwhelmed, I want to leave you all with the opportunity to do something if you so choose. Last week Diary of a Mom wrote a wonderful post about Betsy Devos and listed all the Senators on the Senate HELP Committee and their phone numbers (the ones who heard testimony from her). If you are so inclined to call, here is the link:
If you are interested in writing a letter to the NJ State Board of Education or the NJ Department of Education here is the link to my blog with a sample letter and addresses:
Please, do what you can to help. And as always, thank you for reading!
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January 17, 2017
Editor’s note: I’ve written the following letter in response to an email I received from my son’s private school director regarding a parent action alert from ASAH (Association of Schools and Agencies for the Handicapped.) The New Jersey State Board of Education and the New Jersey Department of Education are proposing new rules and amendments (many of which I listed in the letter, but there are more) which if implemented will have a devastating effect on private schools for special education students in our state, both in their efforts to deliver services and to stay open. I will be sending this letter both to the president of the State Board of Education and the acting commissioner of the Department of Education. If you have a special needs child in a private school in New Jersey I hope you too will consider writing a letter, contacts/addresses are listed at the bottom of this post. If you know someone who has a child in a special needs private school in New Jersey please let them know about the proposed changes. Thank you!
January 16, 2017
Dear Mr. Biedron/Ms. Harrington,
My name is Kimberlee McCafferty, and I am the mother of two autistic boys, a writer, veteran educator, and an autism advocate. The needs of my youngest boy, Zachary, have been well served within our public school system, however our almost fourteen-year-old, Justin, has received his education in a private school setting for the last seven years.
Justin is primarily non-verbal and has a co-existing diagnosis of OCD. He began his educational career in two different public school systems, Freehold and Brick. After four years, it became apparent that our local district, Brick, no longer had a program for him, and our case manager urged us to look elsewhere. We toured both public and private schools, and at last settled on his current placement in a private school. It is the perfect placement for him as he has made significant progress in all developmental areas.
It is truly his second home.
Mr. Biedron/Ms. Harrington, I have carefully read through the New Jersey State Board of Education and the New Jersey Department of Education’s proposed rules and amendments. Your desire to restrict salaries and limit training funds, your request that any gains from any properties sold by private schools must go to public schools, and your suggestion to limit the cost of food services thereby prohibiting many children with severe feeding issues from attending private school, would all drastically compromise many institutions’ capacity to stay open and provide the services so desperately needed by many special needs children in our state.
We are not talking about just a few lives here, although to deprive even one special education student of the services they require is reprehensible. We are talking about 11,000 lives: children who cannot eat without the assistance of a feeding tube; children who cannot walk; and, children, like my son, who cannot speak and requires all personnel who work with him to be adequately trained in behaviorist principles so that he may not only function, but thrive.
These are children whose needs simply cannot be served within the setting of a public school system. We know, because we have experienced both the public and private settings.
If my son’s private school were to close, the impact would not be merely disruptive: the effect would be disastrous, not just to him and the seventy other students and young adults who make such beautiful progress there, but to their parents and siblings as well. A new placement at this juncture in Justin’s development would most certainly elicit a massive regression in all aspects of his life. He has come to love his school, the personnel, and even as a severely autistic child has made connections with classmates over the years. He most adamantly requires the expertise of the educators there and would not continue to grow and develop to his full potential were his placement rescinded.
Ultimately, the effect of closing Justin’s school would be devastating.
Please Mr. Biedron/Ms. Harrington, please reconsider your proposed regulations.
Eleven-thousand children are counting on you.
Mr. Mark W. Biedron
New Jersey State Board of Education
State Board Office
P.O. Box 500
Ms. Kimberly Harrington
New Jersey Department of Education
P.O. Box 500
For more on my family visit my blog at autismmommytherapist.wordpress.com
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