June 27, 2017
Try Something New
Ah, so much to share…
We’re in week two of Justin’s first summer hiatus, and there have been regressions and challenges. For the first time in years I’ve had to employ the angel guard on his seatbelt, as he was trying to get out of his seat to rearrange my CDs while I was driving (super fun, I know!). We went back to the days where he’s perseverating on the DVD player by pushing the buttons over and over and over (and over) to the point where the poor thing is going to break. There’s even been a bit of regression with toileting.
I’ll spare you the details on that one.
But throughout the chaos, there’s been light too.
About four months ago I got the crazy idea that Justin should try two new camps this summer. The truth is over the last five or six years Justin has not been big on trying new things. I am grateful that early on we got him out to places, because I believe that only since they’re now in his repertoire he enjoys time at the beach, Great Adventure, the boardwalks, and a few other locations, even if they’re for minimal amounts of time. To be fair in the last few years options for taking him places have dried up, so there haven’t been many opportunities to stretch him.
But then I heard about these two camps, which coincided with finding out his current camps weren’t running this year. So his momma decided to go for it.
The one camp I wasn’t too worried about was his week of horseback riding, although I knew it would be with totally different people and in a different location from his usual Saturday stint. His first day he hugged me really hard when I said goodbye, but I just knew it would be okay, that he’d acclimate.
He loved it, and they loved him.
Our second attempt into camp world gave me more hesitation. Its activities included soccer, stretching, arts and crafts, all things Justin has traditionally shunned since he turned five. I wasn’t sure he wouldn’t be clutching his aide and plaintively saying “Mama” in an effort to be saved from yoga, but again, he surprised me. They told me he participated in everything, that he loved it.
And again, they loved him and were disappointed I’d only put him in for two days.
Justin is fourteen now, and entering his transition phase. In seven short years (and I’ve been told they go fast) he will be graduating high school, headed for the big unknown. I don’t know what the future will bring for him, if I will be able to find a good day program for him, maybe a small job, eventually a place to live.
But I do know this.
No matter what his adult life entails, he will be asked to try new things, to go to new places, to adjust his routine and acclimate. He will be pushed and stretched to accept a new life, one that does not include his school, or one day living at home with his family.
And the best way I can help him to do that is to push him to stretch his limits now.
So I will continue to do this, even if the paperwork kills me (try applying for a Performcare aide, I dare you.) I will take chances for him, make the zillion appropriate phone calls, fill out the twenty page applications (by hand of course!) and keep trying to give him opportunities to grow. He deserves the most full and rewarding life possible.
And I’m going to do everything I can to see he gets it.
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June 12, 2017
The Secret
I saw you in the parking lot this morning. To be honest, I noticed you and your son while we were both checking out at the pharmacy, and given that I believe your boy, like mine, is on the spectrum, you were probably picking up medication like I was (I’m on a first name basis with all the pharmacists). I saw how you struggled to keep your possibly five-year-old son from running away, watched as compassion chased frustration across your face. When my boy let out a loud “eeee” I saw your head snap over and look at us. Our eyes met briefly- I offered you a smile, you returned it with gratitude.
Sometimes, when I’m having a tough moment with Justin, my severely autistic non-verbal boy, seeing someone else from our “tribe” can make all the difference.
I left a little bit after you, and saw you across the parking lot working to get your kid in the car, full-on meltdown in progress. I wished I could help you, but couldn’t risk my boy wandering away, so I stowed son and meds in the car and left. When I glanced behind me I saw you get into your seat, hopefully crisis averted.
I want you to know I was once you.
We’re in a much better place now. And because you’re one of my tribe, I’m going to tell you our secret to getting there.
Not too many years ago I’d take Justin out, my body on full alert, never knowing how he’d respond to our errand or outing. Sometimes the event went beautifully- sometimes I was struggling to even get him out of the car. I kept at these trips though, believing that getting him acclimated to the car, to waiting, to sometimes having to make a change in plans would pay off down the road, offset the bruises and bite marks that often bore witness to my grand plan to get him out in the world. Some days I wondered whether or not it was worth it.
It was.
Back then, around the kindergarten/first grade years, everything seemed hard. Potty training took over a year and two separate attempts. Eating anything other than a carb was hit or miss. Crying and meltdowns were a staple of our existence.
Sleep was an elusive dream. I really, really missed it.
As stubborn as my boy can be his mother is even more so, and we perservered. I continued to take him out, and over time, he’d come to me with sneakers in hand begging to go somewhere. Using meds and different techniques we learned how to soothe our boy to sleep, for which I am eternally grateful. A couple of years ago I even got my kid to like lettuce and broccoli (my crowning achievement, it will go on my tombstone).
Eventually, his primary emotion was happiness.
We still struggle. Justin has an ancillary diagnosis of OCD, and while medication defuses it, the disorder is a bigger challenge for us than his autism. When enmeshed in the throes of it he is almost manic, impossible to divert, unhappy. Fortunately medication has alleviated some of the symptoms, and when he’s free of its shackles, he is joyful, engaged with his family, at peace.
We try to help him be in that place as much as possible.
About eleven years into our autism journey our boy seemed to relax, and we found ourselves not having to watch his every move, follow him room to room, always wonder with a little panic in our hearts where Justin was. It took a long time to get to this place. We prefer to dwell here.
And I know, although your boy may be only five, it may seemed you’ve already lived a lifetime with him.
I never promise anyone things will get better. But as I watch you speed away I wish I’d had the opportunity to tell you that the landscape of my life, the ease with which we generally get through the day, is nothing I could have predicted would happen all those years ago when I struggled multiple times daily with my boy.
I promised I’d tell you our secret, so here it is.
First, get help when you can, from your child’s school, or from an ABA therapist if appropriate. Tackle one issue at a time, be open to trying different approaches, you never know what will work. Take care of yourself, take a break from your child when you can.
Admit defeat at times, and go on to tackle something new.
And the secret? The reason my non-verbal severely autistic son loves his life, and my mildly autistic son is shedding his 504 and running for class president? It’s this- don’t miss it.
The secret, my struggling friend in the parking lot, is a tenacious grip on hope that things will get better. It’s being relentless in chasing after happiness, peace, and a safe world for your child and family.
The secret is never giving up.
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June 5, 2017
A Good Life
I want you to know that I see you. You’re the mom sitting with your daughter as she does yet one more task for her Early Intervention provider who is gushing over her accomplishments. You’re the dad sitting in on the IEP meeting hearing about all the progress your son is making, listening gratefully to how proud they are of all the goals your son has attained. You’re the parent whose child is young, so very young to carry those letters around, and things are so much better since she started therapy or he entered school. Your child is often happy and engaged. After months of evaluations and long waits for doctor’s visits, you can finally breathe.
But that voice inside that’s been a constant companion for months tells you that your daughter is doing great, but will stay on the severe end of the spectrum. The voice is telling you that despite potty training and those few precious syllables, your son will need lifetime care. It’s the voice that despite all the lovely Early Intervention reports and school progress reports, refuses to go away.
That voice was my constant companion a decade ago, and for my eldest son, it was right.
I have two boys on the spectrum. My eldest is fourteen and on the severe end of the spectrum, and my youngest at ten is only mildly affected. I became pregnant with my youngest when my eldest son was three, and watched my typically developing toddler lose all his words and the light in his eyes when he was eighteen months old. In the space of two months he lost a year’s worth of milestones in all domains. I later watched in wonder as he entered therapy and regained his words, once again mastered those milestones, and recovered his spark. It didn’t happen overnight. There were no miracle drugs, no unproven therapeutic interventions. The truth is he got less attention than his big brother had when I was doing thirty hours a week of ABA with him myself in Virginia because Early Intervention options in the Old Dominion in 2004 sucked. My youngest simply improved monthly, weekly, daily, to the point that he’s now in double digits, and we just rescinded his 504.
And somewhere, maybe a year into his amazing improvements, I knew my eldest’s severe symptoms were here to stay.
There wasn’t one lightbulb “Aha!” moment when I knew Justin would need lifetime care. The realization just slowly came over me, particularly as I watched my youngest defy many people’s expectations (some of his doctors were completely doom and gloom, we ditched them) and once again return to the ebullient boy we had known. Justin certainly made progress, but communication was minimal even after having tried a variety of devices, words were nonexistent, and his meltdowns and sleep issues and eating constraints were slow to dissipate.
At some point I just knew his progress would never reflect his little brother’s. And I will tell you the truth; it was a realization I mourned.
I am a “suck it up” kind of gal, but I will tell you there was a period of time where I was simply distraught. It’s either a blessing or a curse that I’m a big picture person, and I was unable to envision a version of adult life for Justin that did not encompass any of the things I thought he’d need to be content- college, friends, a career, independence. I truly grieved the loss of those events for him, honestly felt he could not lead a joyful, fulfilled life without them.
Ten years later and after a lot of soul-searching as to what truly makes my son happy, I no longer feel this way.
My fourteen-year-old son with limited communication skills, intellectual disability, and accompanying OCD, is happy. When I say happy, I mean that when not immersed in the throes of OCD he is affectionate, engaged with his chosen few, and exuberant. He loves his school. He loves his house. He loves salted pretzels (who doesn’t?). He loves his life, without the promise of the neurotypical path his parents took. He is, in his own way with his DVDs and Baby Einstein clips on YouTube, fulfilled.
I realized that all those expectations I had, those requirements for a happy life, were mine, and mine alone.
I want to be clear that this realization that my son didn’t need my life plan to love his life comes coupled with the knowledge that I will most likely not be here to protect him for his entire lifespan. Honestly, it is a constant source of distress for me. I often envision living to one hundred sixteen to his eighty and going out in one great sigh together, but I know that won’t happen (although if I could will it, I would). Over time I’ve learned to compartmentalize this sadness, but not deny it. It’s just that I want to be here, present, to enjoy my sons’ collective progress, their indomitable spirits, their joy in their unique lives.
There is so much good here. I don’t want to miss a minute.
So I see your smile, the one you’ve plastered on because it’s the appropriate thing to do even as your heart hurts from the weight of a future you just don’t know yet. I see you. I won’t promise it will all work out okay, because no one, not even the most brilliant professional, can do that for you.
However, I will say this. Mourn when you need to. Talk about your fears to people who live what you’re going through. Get it all out, and take care of yourself while you do.
And remember this; even in the altered landscape of your lives, leave yourself open to hope, and to the possibility of happiness.
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May 30, 2017
Ten Things to Do After Your Autistic Child’s Program is Set
It seems impossible, but somehow you’ve crossed everything off your initial to-do list, and your son or daughter is set. Maybe he is now firmly ensconced in an Early Intervention program, and you’ve already booked the eight million school evaluations required to get him into a pre-school program. Perhaps your daughter is older and has just entered a classroom, spent a few weeks there and is doing well. You’ve dotted your I’s and crossed your T’s, and for once there’s no phone call to make, no appointment to schedule. You’ve gotten the help your child needs.
And perhaps as you’re enjoying a latte (which I hope you are, you deserve it), you wonder what’s next.
First of all, make sure you savor the moment. Take the time to celebrate your successful navigation of your state’s Early Intervention system or your school district’s IEP team, and give yourself about twenty hugs and buy yourself a little something fun.
Then take a deep breath, gird your loins, and move on to the next phase of your life with an autistic child.
I remember being at that phase, with my eldest son who is severely autistic being enrolled at three-and-a-half in a full day pre-school program and pregnant with my second child. While part of me wanted desperately to sit in bed all day and watch “Sex and the City” re-runs, I knew there was still a lot to do that I’d put off while trying to get the appropriate services for my child and dealing with our move to a new state. Here are ten things I did (or wish I’d done) after the ink dried on my son’s IEP.
1) No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin (I have the tiny little bitemarks on my body to prove it) but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.
2) If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.
3) If you can afford it, hire an advocate to check out your child’s school program. A fresh set of eyes may see areas that need to improve, or may reassure you that they are doing all they can for your son or daughter. It’s always good to know one in case you need an advocate at an IEP meeting. If you’ve already met you won’t be scrambling to find one.
4) If possible, volunteer at school functions or offer to be a class mom. This is a great way to get to know your child’s teacher and your school’s administrators better. You may also make friends with other parents too.
5) No matter how difficult your child can be, take any offer of babysitting you can and get out. You need a night off from autism once in a while. Even if it’s for a few hours, a break will help.
6) Now that your child’s program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.
7) Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.
8) Make those doctor appointments for yourself that you’ve been putting off. Just do it.
9) Get involved in an autism walk in your community. It is so powerful to meet so many families like (and unlike) yours. It will give you strength.
10) I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.
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May 22, 2017
An Act of Kindness
A few weeks ago my mom and my eldest son, who has severe autism, went on one of their favorite outings- a movie and lunch. My mom is an old pro at this by now, and Justin revels in the routine, the same movie theater, the same restaurant, hell, the same lunch. I know he enjoys these days, as does my mom, as he’s always well-behaved (except for the occasional grab at a customer’s lunch, but we’ve found people are remarkably nice about losing a fry or two). This last outing, in truth, was nothing special.
Except this time, it was.
I’ve been noticing on the news and on my Facebook feed that my fellow countrymen seems to be more prone these days to random acts of kindness. Just a short time ago my mom and son were the beneficiaries of one of these acts of generosity, as a couple a few tables down from them paid for their lunch and left before my mom was even made aware of it.
A true act of generosity is when you don’t stick around for the accolades.
I asked my mom if she’d had a hard time with Justin that day, if perhaps his behavior had prompted the couple to feel sympathy for my mom, but that wasn’t the case. Justin was an angel as usual. I’m guessing our lovely benefactors simply saw a grandma and a disabled teen eating lunch together, and were moved to show their support. Perhaps they were impressed by my son’s behavior. Perhaps they have a family member on the spectrum.
Perhaps they just felt like doing something nice.
I understand the anonymity, but I wish I could thank them in person. The truth is if this had happened to me and Justin years and years ago I probably would have bawled my eyes out as I really needed some random acts of kindness back in the day. My mom said the waitress teared up as she told my mom what they had done, and mentioned she had a nephew on the spectrum.
It seems everyone has a connection to autism these days.
I love that someone did this for my mom and Justin. The truth is, I don’t even need to know why. It’s just another sign to me that there is not only increased awareness of autism, but also an increased acceptance of autism. It just seems to me it’s another sign that my boy is okay exactly the way he is.
And to that couple out there who made my mom’s day, thank you from the bottom of my heart.
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May 15, 2017
Birthday Boy
My dearest Justin,
Last week you turned fourteen. It happened to be field day at your school, and your smile when you saw me waiting for you to perform was magnificent.
That smile carries me many days.
I usually have a variety of emotions on your birthday. I always take time to remember the first moment I heard your cry and held you in my arms- my firstborn, bright with promise. It took about three years and a lot of doctors to get you here, and your dad and I were beyond ecstatic when you graced us with your presence. Your arrival made us a family. It launched me into the role I was born into (if you believe in such a thing).
The reason I’m ambivalent on your birthdays has nothing to do with your “label,” or even the dreams I had for you when I was still hosting you. I am mostly past feeling sad that you will never go to college, marry, or enjoy the trappings of a more “conventional life” (whatever that is these days), because in my mother’s heart I know you don’t miss these things. You are truly happy with your DVDs and your YouTube videos of Baby Einstein. When not in the throes of an OCD episode you are blissfully happy.
Most days, it is enough.
No, I’m not ambivalent about your birthdays because of your “now.” I’m ambivalent because of your future. You see, birthday boy, your mom reads a lot, and talks to lots of people about what’s coming down the pike as you enter your transition years.
By the way, just yesterday you were snuggled into a perfect fit in my arms, so how did this happen?
Some people call post-21 the cliff.
Some say they’ve been able to create fulfilling lives for their adult autistic children.
I want you to know with every inch of my soul I’m shooting for the latter.
I also want you to know that last week I did something different- I pushed the ambivalence down and lived in the moment (!) and just reveled in who you are, did not imagine who you will be or what will happen to you.
I’m very, very proud of myself.
You are strong, mercurial, funny, kind, smart, and abundantly affectionate.
Your hugs are the best thing in the universe.
I love you at every core of my being, and I will fight for you with my last breath.
You are my heart.
Happy birthday to my not-so-much-a-boy anymore.
I love you.
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May 8, 2017
Mother’s Day Love Note
Dear Justin and Zach,
This coming Sunday I will celebrate my fourteenth Mother’s Day as a mom, and I thought it would be nice if I wrote you both a little note to say thanks for making me one.
I’m not quite sure how it happened that I have a teenager and another kid in double digits when I still feel (inside!) like I’m twenty-five, but here we are.
Time happens.
I always wanted to be a mom. Although I wasn’t so much into Barbies and dolls when I was little I was into your uncle (until he could move around and get into my stuff), and I just naturally gravitated toward babies and kids. Actually liking children was one of the reasons I ended up being a teacher (there were others, the phenomenal pay was not one), and from an early age I knew I wanted two. One of the things that cemented my relationship with your father was that he knew he and his wife should never be outnumbered by their progeny.
He was a keeper.
If you haven’t realized this by now your mom is a planner, and I admit I once had a different idea of how things were going to turn out. I learned a lot from being an educator, as in only hope for happy and healthy, which, despite autism, I got.
And for that boys, I am eternally grateful.
I admit, that twenty-something year plan I had in mind did not include autism. I did not think I’d have two kids with the disorder, one mildly affected, one severe. Autism was just not on my radar. I’d had a few students with Aspergers in my career, and occasionally there’d be something about an autistic savant on tv, but autism wasn’t really a household world at the turn of the century.
Although I’m certain that for those families with kids who have it, it was.
So when I was carrying you Justin I never often entertained that any of my kids would be autistic, or would have anything more to worry about than possibly being very short (a gift from me) or a bit clumsy (a gift from Dad). I really felt like if I gave both my kids a five star womb hotel it would all work out. I thought I had some control.
Hah.
But the truth is the universe had a different plan in mind for all of us. Justin, you really showed signs from birth, signs like not sleeping and awful reflux that we attributed to colic and being a difficult baby. Zach, you developed typically until eighteen month when following an illness you lost all your works, developed a rash along the entirety of your body, and most distressing, lost the light in your eyes.
Good times.
Honestly, you two really made me work for that mom title. I initially thought I’d have a leg up on parenthood after teaching all those years, but as John Snow would say, “I knew nothing.” For years, I worried you two would never sleep (that worry was for me and your dad too). I worried you’d never eat anything other than a carb (and while I get that urge, it’s not always the healthiest path to take). I worried you’d never have friends. I worried we’d never be close (I could have ditched that one early). I worried you’d both never be happy.
I always worried.
Years passed (some required more chocolate and wine than others), and somehow, without my noticing it, life became easier. Justin, when you are not in the throes of an OCD obsession you are productive, happy, content. Zach, as you’ve matured it’s become so much easier for you to navigate school, social situations, and those ever-increasing life choices. I still carry the worry, don’t get me wrong. Every single day I worry about creating a stellar life plan for your adulthood Justin. Zach, I still worry sometimes about your life plans of a wife, kids, college, and owning the rights to Minecraft (it’s good to have dreams).
I still worry. I always will. But I can honestly tell you at this present time I no longer carry around the dread.
I want to thank you for giving me this life-altering, sometimes frustrating, sometimes exhilarating, magnificent role of being mother to both of you. I want to thank you for these things, and for so much more.
Zach, I want to thank you for being such a help with your big brother (even though sometimes you don’t want to).
Justin, I want to thank you for working so hard and for the stellar behavior you display for everyone at your treasured school.
Zach, I want to thank you for always challenging me to see things from a different point of view, and for widening my world.
Justin, I want to thank you for teaching me patience and the ability to open my mind to different kinds of happiness.
Zach, I want to thank you for your infectious laugh and for not making fun of me for having to google answers to all of your many questions.
Justin, I thank you for the glory that is your “nighttime self,” for the satisfied grin and kiss you bestow on me every night, and the fierce hug I get before you slip into slumber.
Thank you for letting me share your worlds.
I love you both.
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May 1, 2017
The Weight of It
Today we ran into each other at the grocery store. We don’t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It’s the obligatory two to three minutes of conversation, but truth be told we both like each other, and despite our long list of things to accomplish that day we’re happy to have seen one another.
I think in another lifetime we would have been friends. Hell, I like your daughter so much had she been born thirty years earlier we would have been friends too.
I have lots of acquaintanceships and friendships after living here more than a decade now. A number of my relationships have a great deal more depth to them (my cub scout wife comes to mind, thank God she volunteered to “be prepared” too), and a handful of them are moms to autistic kids as well. I made sure to make friends with moms of kids in both the severe and mild camps, as frankly while I know it’s a spectrum (who doesn’t now) my kids’ “autisms” present as totally different entities, with so little crossover to call them both just “autistic” is laughable.
Okay, I’m not laughing, but you know what I mean.
The truth is, I really only unburden myself to the other autism mommies, in part because to explain what’s really going on at home would take a lot more time than two to three minutes (understatement of the century), and in part because I need the people I vent to to just “get it.” My mommy friends of “high-functioning “ (a label I hate) kids get my angst when my youngest has a friend issue or has decided he’ll never take care of his older brother when he’s older because he’s too much work (which I really, really get, but one can have hope). My “low-functioning” (another label I hate) mommy friends talk me off the ledge when I talk about sleep deprivation/potty issues/ his overwhelming need to hide my keys twelve times a day and know just to listen and not suggest anything, because I’ve been on the autism rodeo for fourteen years, and damned if there isn’t anything left to try.
Believe me, I’m A type. I’m thorough.
I know, my grocery store friend, we see each other fairly often. I’m the one in the decent-looking blue t-shirt after school trying to interest seven boys in a scouting program that just got with the twenty-first century. I’m at PTA meetings (although I’ve backslided this year). I volunteer at school for various events I’m not sure my son cares if I attend anymore (he says he does, but perhaps he just knows how to work his mom). I usually have a smile on my face (I once won a scouting award which touted I was “Kim Happy Clown McCafferty,” which was accurate on so many levels it was uncanny.) I look happy. I am happy.
But there’s this too.
I won’t even attempt to speak for other parents of autistic children here. There’s not just a spectrum for our kids, there’s one for the parents as well. I have read essays and even met parents of severely autistic children who literally wouldn’t change a thing about their kids because they believe it might change the core of who they are. I have read pieces by and met parents of severely affected kids who would do anything for a cure, who would get them to take that magic pill no matter how many pill-swallowing programs their kid had to attend to get that damn magic down their gullet. For the record, I’m somewhere in between “autism is unicorns and rainbows” and “suck it out of him.”
Where I am on that spectrum depends on the day. Hell, sometimes it depends on the minute.
The truth is I vacillate on many things that affect my beautiful, severely affected teen-aged boy. There are some days I am deeply sad about my boy never attending college, getting married, or driving a car (okay, maybe not that one so much). Some days my rational mind tells me he doesn’t think about these things (yes, I presume competence, no, a child still entranced by Baby Einstein in puberty is not worrying about his ACT scores) and is mostly happy with his life, and I should just be grateful for that.
And I am. And despite the accompanying OCD that often threatens the fragile harmony of our family he is happy and thriving. It’s just that when things disappear constantly on his fifty-year-old mother who desperately needs visual cues, sometimes I am not.
Autism mostly happens to the individual who has it, but it happens to the rest of the family too.
If I’m being perfectly honest with you dear acquaintance, I function, I present that smiling countenance to the world because I compartmentalize. You see, my son’s age and impending adult have arrived, and that “future thing” I put on the shelf because I was trying to get him to pee in the potty for a year-and-a-half has come to call. This fall will be his first transition IEP, and while I know his amazing, “Disney World-esque school” (I know it’s not a word but it should be) will do their best by my boy, the reality of post twenty-one is scary as hell.
The truth is, contemplating his future, is, well, impossible. You see, even if his dad and I can figure out something worthwhile and safe for him most days after twenty-one; even if we can find a safe residence he’ll actually stay in when technically he’s old enough to drink; even if we can fashion a world that will never be as wonderful to him as his school placement but will hopefully keep him happy enough the problem is, his dad and I will die.
And planner that I am, even I can’t get out of this one.
I am confident that his little brother will play some role in his care-keeping, even if it doesn’t involve living with him. His cousins are close enough to his age I’m sure they will check in on him as hubbie and I approach our dotage, and will do so after our deaths. I’m hopeful I can figure out what the hell to do with him, as the “group home versus “buy a place with our last dime and staff it” options are a constant melody in my mind. Frankly, I mostly block out the statistics on his chances of being sexually assaulted or left in a van to die (and no, I’m not being dramatic) because these issues are too painful to contemplate, and even I can’t help him from beyond the grave.
But damn, I’d give it my best try.
The truth is, the weight of his future world is always there. It’s there when I slink into the back of a PTA meeting fifteen minutes late because I had to help my husband get my son upstairs for bed. It’s there when I’m hoping for forty-five minutes of solitude at my youngest’s karate class because that afternoon was soul-grindingly hard. It’s there when things are actually good and I’m just directing kids through an obstacle course at field day.
It’s there when I run into you in the produce section, the products of which are still considered an abomination by both my kids.
That weight, that tangible weight, is always there, no matter how deep my smile, or if I remembered your name. Please know that’s why I might have forgotten what you do for a living, or why I halved my volunteer services this year because I’m just too damn tired. Despite the beautiful, vindicating, soul-strengthening moments I have with my family, that weight, that uncertainty, that impossibility, is always there too.
So please, just know.
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April 24, 2017
Dear Future Daughter-in-law
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 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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April 18, 2017
Get Out
I recently had the joy and pleasure of spending a week in Ireland with one of my best friends, without kids or husband (I know, don’t hate me), celebrating a milestone birthday for the two of us (I won’t say which one but I loved the eighties so you can guess). It was an amazing week seeing the breathtaking beauty of the country, and meeting the ridiculously nice people. For seven days I didn’t have that running list going through my head of everything I need to accomplish on any given day, no chores, nobody asking me to fetch a seventh snack or cup of juice.
It was heaven. It was also freedom.
We were on a bus tour so there wasn’t a lot of time to think about things, but I had a lot of time to process on the seven hour flight home when both me and my friend were finally too tired to talk to each other.
I had a lot to think about.
As usual, when I have large amounts of down time (that would be never) my thoughts turned to my boys, how they’re doing, what the future holds for them. Although they both have autism, the truth is, their futures could not be more different. My youngest son who has mild autism has every expectation of driving, going to college, getting married, and having kids. My oldest son who is on the severe end of the spectrum will need lifetime care, which unfortunately at some point (although I’ll give it my best shot) I will not be around to provide.
As I said, I had a lot to think about.
The truth is, I loved this trip, with its new experiences, its lack of responsibility for others, its summoning of the echoes of my twenty-something self who lived in France for a year back in my college days. Traveling has always been a passion for me, has been when I’ve felt most alive, unfettered. And while I wouldn’t trade being a mother for the world it is something I’ve not been able to do as often as I’d like due to the boys’ diagnoses, which made them difficult to deal with at times.
Okay, yes, that’s the understatement of the century.
Over the years my husband and I have usually managed to carve out one short trip for the two of us annually, and as my eldest son has reached his teenage years I admit I’ve felt a sense of urgency in planning these excursions. In seven years my boy will graduate high school at twenty-one. My mother, who is the only relative able to watch the boys for us, will be in her eighties, so I’m guessing our ability to travel will be limited. You see, the waiting list for residences right now is about fifteen years after he graduates, and even then I’ve been told many of these homes are not places I’d want my son to reside.
The truth is, if we can’t find a good day program for him the day after he graduates he will be home, all day, every day, with me. He will not appreciate this situation one iota. I can tell you, neither will I.
Hence, the sense of urgency.
It really hit me on the plane that my options for fun down the road may be limited. Often I am so caught up in the daily minutiae of autism with two boys that I forget to look at the big picture (which is sometimes a good thing), as I focus on trying to get through the day. I also realized that despite the fact that I am a planner extraordinaire (ask my former teacher co-workers who made me team leader and nicknamed me “goddess”) I have been deliberately not contemplating the not-so-distant future, because while I love my kid the thought of taking care of him 24/7 at almost sixty without a break, is, well, pretty damn depressing.
I need to take every fun opportunity that comes my way and grab it and not let go.
It’s time for me to sign up for those “transition workshops.” It’s time for me to be completely honest about what’s coming down the road- that not every family finds a good, safe place for their disabled adult to go to a day program or to live, or that it might take a long time to find these options. It’s also time for me to forget how tired I am and get out more, recapture that fleeting feeling of freedom when I can.
And the truth is all of us, those who are in the “club” and are lifetime caretakers, need to face up to what’s coming, remain as optimistic as possible, and have some damn fun when we can. The earlier you start, the better.
And as I kick off this significant secret birthday, I’m going to do just that.
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