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 13, 2017
Practice what you preach.
The words came unbidden to my mind this weekend as I watch my eldest son, who has severe autism and OCD, rearrange the pile of books on the kitchen table for the hundredth time that day. I know to you this behavior may sound benign. However, along with the rearranging comes a penchant for moving things to a new location, which can include the bathroom or shoving an important piece of paper underneath a pile of Justin’s therapy “stuff,” in other words a place where it will never be recovered. We are back where we were three months (and really two years) ago, and it literally happened overnight. One day he was fine, the next not. Once again either my husband or I need to be in the room with him, or take the risk our belongings will be trashed, or worse, hidden.
And I can tell you people, I’m just not up for it.
Of course his OCD just happened to rear its ugly head on a weekend where I have to be out of the house for the good part of seven hours with my other son, leaving my husband to stay within a five foot radius of Justin for the better part of a day. I admit, the entire time I’m at church and a Cub Scout affair only half my mind is there. I am channeling the stress my husband feels, as he can’t leave the room where Justin is on the computer (he did for two minutes Sunday morning, and came back to find my numerous sticky notes and papers in the trash,) so while I’m physically in these places, part of my heart is back home.
I hate that my son goes through this. When he’s in the throes of it there’s no joy on his face, none of the happy smiles he shares with the world when he’s on the computer, or playing the same segment of a movie on his DVD player, or watching one of his Baby Einstein movies on TV. Honestly, sometimes we feel like he’s not even really with us, and at his best, our boy is totally with us, engaged, loving.
Watching his suffering literally breaks my heart.
I know people reading this will have some heartfelt suggestions. We’ve gone the BCBA route with an excellent practitioner. We’ve tried numerous medications, and found one that for the last six months has worked. He may just need a medication adjustment, which of course means harassing his neuroped until I can get the slip for lab corp, making the appointment, telling his nurse and his teacher not to give him his lunchtime med, and picking him up early at school (because of course there’s only a one hour window in the day when the blood can be drawn to be most effective). Frankly, I am so worried we’re heading back to the travails of 2016 that I welcome all the annoying details, am happy to have something to do to move forward.
But in the back (and hell, the forefront of my mind), I know that upping his medication as we’ve been doing every three to four months might not work, or we may not even be able to up it as he might be at therapeutic limits. There literally may not be anything to do other than ride out the storm.
And despite my saying “I’m just not up for it,” the truth is I have no choice.
There are little things we can physically do. His returned desire for rearranging has force me to purge some items, which is always a good thing. We can try a few tricks that sort of worked in the past, but we’ve noticed he fixates on different things every time he goes through a period like this, and it’s impossible to predict what he’ll focus on next. Sometimes we’ve found the phone buried under a mound of trash. Furniture can be dragged into the middle of the room in an attempt at remodeled feng shui. His OCD is like playing wacamole. We never know where it will pop up next.
But the truth is what I really need to do is remember my own words.
Even with autism and OCD things tend to come and go in cycles.
My husband and I need to tag team this so that every waking minute he’s home the “watching” doesn’t fall entirely on me.
While we’re going through this, and ALL of us go through this, we need to remember to take care of ourselves too.
I’m going to try not to get overwhelmed. I’m going to try to still revel in the moments our boy is truly here with us.
I’m going to practice what I preach.
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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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February 6, 2017
He sits quietly between me and his father, staring straight ahead as I attempt to engage him. I ask him if he’s happy to be here at the Trenton planetarium for their holiday laser light show, and I get nothing back, neither eye contact nor the glimmer of a smile. I settle back in my chair and deal with his brother who is both cranky and tired, and within a few minutes, the music and magic begin.
And my boy is transformed.
As the first notes of “Rudolph” ring out Justin begins to rock back and forth (we get there early so he can sit in the back row and rock out to his heart’s content), gracing me with the slightest glimmer of a smile. His movements really ramp up as the chipmunk song comes on, a staple of the show. I see him lean over and smile at his grandma as he does every year, and we both swear he remembers this is the first movie he ever saw on the big screen, and that he saw it with her.
So much goes on in my boy’s brain he doesn’t need to use words to express.
As the “Two Front Teeth” song comes on (which for some reason annoys me annually) I let myself think back over the last ten years we’ve been bringing him and later his brother here, how stressful this outing used to be. Some years the show was packed and so we made it a priority to get to the planetarium absurdly early which guaranteed us good seats, but brought with it its own set of difficulties. Back in the day Justin had a really difficult time waiting in line, and with food and drink prohibited even a plentiful array of toys could not often deflect our son’s desire to bolt. Often his father and I would be a sweaty mess even before they let us into the inner sanctum, but somehow once we got inside Justin always calmed down and reveled in the notes and colors of the show.
He’s always not only behaved there, but delighted in the experience. In turn he’s delighted his parents as well.
It being the end of the year and all I’m at least trying to carve out some time for reflection (it’s a goal), and as I think about how far we’ve come in the ten years we’ve made him a Jersey boy I realize how far we’ve come with other outings as well. Back in the day I’d return home bloodied and bruised from a trip to the boardwalk, my son’s aversion to waiting in line evidenced by my colorful flesh. The pool at one point held no interest for him and was regarded as a well of torture. Our first attempt at horseback riding through a family event sponsored by POAC resulted in my boy protesting on that horse for the entire fifteen minutes, his indignation at having to ride the beast apparent for all to see. Trying to get him not to bolt out of the waiting room on a blood draw day (can’t blame him for this one) was a Herculean effort I’d almost fail.
Trying to get him to eat anything that wasn’t a carb was enough to send me to my own chocolate stash.
And yet, almost a decade after we’d attempted all of these outings my boy loves the rides, and will at least do one round around the pool without protest. I’ve been told he’s an amazing patient at Lab Corp, and his horseback riding lesson is the pinnacle of his week.
Hell, the kid even eats lettuce.
The point is, even when it was grueling, annoying, or frankly painful, we kept trying. We kept trying, but not because we wanted him to like the same things as his neurotypical peers. We did it in part because we wanted him to have interests other than playing the same thirty seconds of a movie on his DVD player (which we feel is fine for a while, but not all day). We mostly did it however because we felt if we kept on trying the kid would actually like these activities, that they would allow him to stretch and grow, and most importantly, make him happy.
Eventually, we were right.
And I guess my message to anyone just starting out on this autism path is keep trying. When Justin was really little and we lived in DC our world was so small, as literally just leaving the house would trigger an avalanche of tears. I remember how in the dead of winter I literally could not be cooped up one more day. I began what I dubbed “mall madness “, which began with me just driving to the parking lot and returning home, and ended with my kid after slow desensitization loving being walked around the mall and devouring those devilishly delicious Auntie Anne’s pretzels that became my weakness too.
Even before learning the tenets of ABA I was big on rewards.
So perhaps this new year make getting out a goal, start trying new things even if they suck at first (and many will), and don’t give up on widening both your child’s world, and your own. My son is thirteen and severely autistic, and for the most part he is a delight to take anywhere, and enjoys where we go. It took patience and band-aids and lots of wine but my husband and I did it, and as I see my son’s face light up as he’s trotting away on his horse I know I’ll never regret one moment of our struggles (not even the ones that needed Neosporin).
My wish to you in the new year is plan for your outings (plans b, c, and d are good), and if anyone’s offered you any help take them up on it and bring them along. Remember that neither Rome nor acclimating your autistic kid to the outside world were built in a day.
And as Nike would say, “just do it.”
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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
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