August 15, 2017
Help Wanted
Last night the two wonderful BCBAs from my son’s private autism school came over for two hours to give me suggestions on how to make Justin more independent with his nighttime routine. I know some of you are rolling your eyes and saying “first world autism problems, Kim,” but hell, their services are free, and it’s important that I make him as independent as humanly possible.
I am very conscious of the fact I won’t be here forever to give him his bath, so the more he can learn on his own, the better.
As usual the ladies came up with some fabulous ideas I will be implementing over the next few months, and when they left, it was nice to know I was doing a lot right.
Even we autism mommies need a reward on occasion.
Just a few years ago I might not have contacted the school to ask for help, as requesting aide has never been my forte as I used to be the person (a teacher) who helped other people.
Not asking for help when you have a severely autistic kid- big mistake.
Back in the day when my son was first diagnosed we lived in the DC area, and most of our friends worked or had just had kids of their own. Despite that fact we did get offers of assistance, most of which we turned down. After all, we were two reasonably intelligent and responsible adults, we could handle this.
Well, maybe not so much.
I’m not one who believes in regrets- a waste of time for something you can’t change. If I had it to do all over again however I would change this. I would take those offers of help, from babysitting to running errands for me to making a Starbucks run (it was just down the street,) and as long as people were offering, I’d take them up on their kindnesses.
We all need a little help sometimes.
So if your child has just been diagnosed, or you’re a few years in, or hell, he’s a teenager, and someone reaches out, just take it. I know, you’ll be worried about what happens when you’re out (it might be awful, but at least you got to go somewhere!). Maybe you don’t want to inconvenience someone if they offer up dinner (trust me, it makes them feel good to help and it’s one less meal to cook, go for it!). Perhaps you’re just too overwhelmed with so many, many needs that you can’t even separate out what you need most.
Make the time to do that. It is so important not only for your child, but for you.
Having an autistic child can be incredibly lonely and isolating. Even if you’ve made some “autistic mommy peeps” you may not be able to sneak away with work and Early Intervention schedules to hang out and give each other support. I will say this- it is integral to your mental health that you get a break, and trust me, most of the people offering really mean it.
Besides, you can glorify their efforts on Facebook later, a win-win for all!
There’s nothing wrong with admitting you’re overwhelmed. There’s nothing wrong with admitting you’re exhausted.
There’s nothing wrong with admitting you’ve run out of wine and chocolate.
Ask for help. And know as you’re doing it you’re not only doing something good for yourself, you’re helping your child too.
Just ask.
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August 8, 2017
I Believe
The other day in my seventeen minutes of free time I happened to run into Barnes and Noble, and as usual I headed back to the kids section to see if anything new was out. As I perused the shelves of books ranging in subject from ADHD to bullying my eye stopped on the autism shelf (yes we merit our own shelf), and I had to laugh. Sitting right next to Jenny McCarthy’s Louder than Words was John Elder Robison’s Look Me in the Eye.
This may be the only time in recorded history that these two individuals will ever be close together on anything.
The placement of the books brought to mind the many divisions that still exist within the autism community. To vaccinate or not to vaccinate, ABA as a valuable tool or a torture device. Autism as a different neurology or brain development gone awry.
To cure or not to cure, that is the question.
And I realized as I stood there contemplating the fact that these two books were actually touching each other that I can honestly say twelve years ago when my eldest of two autistic kids was first diagnosed that sometimes I was confused about what to think, what to try with him to alleviate some of the very distressing symptoms that came along with his severe autism.
I find, more than a dozen years later, I am no longer conflicted about much anymore. Here is my “state of the union.”
I do believe autism is an alternative neurology.
I believe that sometimes it is a gift.
I believe it’s not a gift any time either of my sons suffers.
I believe both in assuming competency and being realistic. My eldest has intellectual disability. There are skills most of us have that he will never master. Accepting that does not mean giving up on him.
I believe that ABA done right can be an invaluable tool.
I believe ABA in the hands of the wrong practitioners, as with any therapy, can have disastrous consequences.
I believe my youngest is not disabled by autism.
I believe my eldest son is.
I believe to my dying day I will wish for a treatment that would enable my eldest boy to live independently, not strip him of his autism, but enable him to care for and protect himself.
I believe in my right to write about my family’s struggles and triumphs.
I believe autism often has severe financial, emotional, and physical effects on other family members as well as the individual. We family members need to take care of ourselves too.
I believe both of my boys are fabulous human beings and that the world has much to learn from them.
I believe in remaining open to everyone’s opinions, autistic or not.
I believe being autistic is not the same as raising an autistic child.
I believe most of us parents of autistic children are doing the best we can.
Most of all, I believe in supporting one another, autistic and non-autistic alike in an effort to help our kids be the best they can be.
I believe.
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August 2, 2017
Tired
Okay people, I will admit this today- I’m tired.
Yes I’m tired in part from waking up at 4:00 for no legitimate reason whatsoever (yay aging!) but that’s not really it if I’m to tell the truth.
Honestly, massive quantities of chocolate can help that kind of tired.
No, it’s a “worrying” kind of tired, the kind that sets up residence the second I wake up and follows me (hopefully) into dreamland.
I’m tired of being afraid.
I’m tired of worrying about Medicaid cuts.
I’m tired of worrying that the massive impending budget cuts in our town will threaten Justin’s private school placement.
I’m worried someday he’ll become aggressive again and that will threaten his private school placement.
Hell, I’m worried some day just for kicks our district will want to bring him back (not a great idea).
I’m worried that new rules and regulations will from the NJ Board of Education and Department of Education will make it more difficult for private special education schools to stay open.
I’m worried about Betsy Devos. Still.
Frankly I think much of this worry is surfacing due to the upheaval in our house since the fire, and knowing that Justin’s routine will be disrupted at some point during the two months it will take to fix it (not knowing when is the BEST part!), so maybe when we have some closure on that, other worries will fade.
Maybe not.
But I admit, I’m trying to compartmentalize because I love summer damnit, and these really aren’t cheery “summery” thoughts.
Perhaps they’re not cheery in any other season either.
So once again (I’ve gotten really good at this!) I’m going to compartmentalize, and try to focus on the positives (I’m the girl who when told her parents were getting divorced immediately envisioned decorating her second bedroom, so I’m generally a “look-on-the-bright side” type of person).
There’s the look on my eldest son’s face the day after the fire when he realized he could sleep in his bed again.
There’s Zach telling me about a conflict at camp he worked out on his own without adult assistance.
There’s the outpouring of offers of help we’ve had over the past three weeks, the kindnesses extended, the “getting it” even from friends without autistic kids.
There’s the BCBA from Justin’s school offering me suggestions for independence and telling me my eldest son and I have a lovely morning routine.
There’s the five thousand hugs my eldest son gives me before he boards his bus.
There’s the proclamations of “I love my family” from my youngest on a nightly basis.
There’s good here too.
And I know I need to gather my thoughts and gird those loins and “frozen” what I can’t control and think about those good things, so I don’t miss even one spectacular moment with those kids.
I’m tired of being afraid.
I just quit.
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July 25, 2017
I Want You to Know
Dear Care Giver to Justin,
If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.
If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.
I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.
It’s good to have hope.
You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.
I know. It only took me four paragraphs to brag.
I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.
See, I can be objective.
I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.
Hell, you may be struggling just to get him out of the house.
Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.
I have my limits.
I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).
My boy has his limits too.
I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.
Yup, I promise.
I also want you to know how many people loved him- family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.
I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.
I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.
So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.
We “got” each other.
He was my greatest challenge, my soul, my aching heart, my joy.
I loved him.
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July 20, 2017
You Should Know
We ran into you today at the boardwalk, former aide to Justin and frankly, one of my favorite paraprofessionals ever (trust me, at fourteen he’s had dozens, it’s truly a compliment). I stopped my boy to let you see how tall (and handsome, I’ll be Facebook braggy) he’s gotten, and you couldn’t believe this was the seven-year-old boy you’d cared for a lifetime ago. We stayed and chatted a minute or two before my son took my hand and started his stealthily strong pull toward the rides, a command with his increased size I knew I must obey. I hugged you, because that’s what I do, and we said our goodbyes as we headed in different directions.
The entire time we spoke, he barely looked at you.
You’ve been doing the “autism gig” long enough to not be hurt by his apparent lack of recognition, even though you two were quite attached when he was in school with you. What you don’t know is when we saw you approaching I told Justin his old teacher was coming, and when he saw you, he smiled that slight grin of his. It’s the one that lets me know he remembered you, that you once meant something to him.
I know you didn’t get a chance to see it because you were too far away, but I want you to know it was there.
It’s important for me to know that you know it was there.
I’ve seen this happen time after time with him. We run into people he was once passionately attached to, and he displays the barest hint of recognition, if that. Frankly, if that person is no longer in his life on a daily basis that slight grin is all they may get, and maybe not even that. It could seem like he no longer cares.
And to be honest, I can’t be sure at that time that he does.
But I want you to know that his tiny smile speaks volumes for what you meant to him in the past. The truth is when I take Justin out and we encounter people he’s never met before he gives them nothing- no eye contact, no glimmer of a grin, only a “hi” when I ask him to say it.
They don’t get the smile.
The smile means he remembers you. The smile means you once meant a great deal to him, that he appreciated your patience, your affection, your perserverence.
That smile means he appreciated you.
That smile is the best reference letter you will ever get, because it’s honest, no artifice attached.
He cared. He just may not show it now.
And I want you to know I thank you too, for all the fun you must have shown my boy, for the kindnesses extended, the myriad ways you must have made him feel safe and helped him make sense of the world. Your contribution to his joyful soul counts.
You count.
Thank you.
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July 14, 2017
Love
I watched him walk away from me in the dusty barn we call horseback riding home, curious as to why he was heading for the door. I followed behind, helmet in hand, and saw two middle-aged woman standing in the entrance, chatting with one another. I watched as Justin approached them and stopped, and curious, I stopped too. His back was to me, and all I saw was him gently place his hands on both women’s cheeks, look into their eyes, then walk back to me, grinning. The women assured me all was okay and that his smile was a mile wide as he looked into these two strangers’ eyes. My boy returned to me, asked for a juice, then continued his usual pacing back and forth as he waited for his horse to be ready. I have no idea why he approached these women he doesn’t know (usually it’s pretty teenaged girls, and then he wants a hug or kiss).
There is so much I’ll never know.
My fourteen-year-old son is severely autistic and non-verbal. There is not a wide circle of individuals he has connected with in his life. I know that when I take him places and prompt him to say hello to people often all they see is a boy gazing off at a point somewhere behind them, or a disconnected stare. Most of the time strangers will not get a reciprocal “hi” out of my boy; for Justin, it will be as if they don’t exist. I’ve seen this happen countless times out in the community, when picking up my youngest from karate, or when we attend cub scout events. He only gives what we call the “forehead hug” to his extended family, and he has known and lived fairly close to them his entire life. Frankly, based on just these encounters, anyone could think he doesn’t connect at all.
But for those in his inner circle, for those he truly adores, he is a world of compassion and love.
My son’s true loves are a few of his teachers from school, his grandma, his dad, (sometimes) his little brother, and me. For us there is a world of affection, including snuggles on the couch, and what I like to call our “ten minute hug time” which must transpire every morning or he won’t get dressed, and must be the capstone to every evening or he won’t go to bed. On the few occasions I’ve cried in front of my son I’ve always received an embrace, and often throughout the day he just plants one on me, looks into my eyes, grins, and walks away, not even manding for a thing.
For those special souls, he is a “hugger,” just like his mom.
I write about this and tell people how he acts with his tribe because I want them to know he feels compassion, empathy, and love, because it may not always be apparent when encountering my son for the first or even the fiftieth time. My boy, despite not talking, despite not interacting in a traditional way with most people, has the full range of emotion we neurotypical folk do.
I remember when he was first diagnosed at seventeen months I feared that closeness we’d always had since birth and his “snuggly soul” would disappear- my fears were totally ungrounded. Thirteen years later we are deeply connected, my boy and me- there is no doubt of our commitment to one another.
I just want everyone who meets him, present and future, to know how deeply he feels, that his core is love.
And I am forever grateful that the affection he extends to his posse is reciprocal, returned many times over. He is loved. He is cherished.
He doesn’t even need to say the words.
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July 6, 2017
Silver Lining
So, two nights ago the outside of our house caught on fire.
And I worried I wouldn’t have anything to write about this summer.
A little bit after nine o’clock on the fourth of July I had put the kids down, gotten into my pjs, and was preparing to watch the DC fireworks with my hubbie and honor our tradition of talking about our glory days when we used to actually go to the capitol to see them. As I was making my way to the kitchen to celebrate our nation’s birth with ice cream and wine (they go great together, try it!) I heard a loud explosion between my house and my neighbor’s. I had enough time to think what the hell that was as I ran to the door, which slammed open as my lovely neighbor screamed in my face that my house was on fire and to get out. I stepped outside to look and saw our huge spruce tree go up in smoke, and the side of our house, the outside wall to Justin’s room, ablaze.
And I swear to you, time stopped.
I looked next to me to see my other lovely neighbor leading my youngest son out of the house. I could tell you as I ran for the stairs that a little “life flashing before my eyes” thing occurred. I could tell you that I thought about the fact that Justin can’t scream for help. I could tell you that I prayed that smoke wasn’t already overwhelming him. I could tell you I prayed for no fire to have insinuated its way into my son’s bedroom. I could tell you those were my thoughts, but it wouldn’t be true.
All I could think was a primal, “get Justin.”
I want you all to know that generally getting Justin out of bed when he’s asleep is a Herculean task that requires a great deal of chocolate prior to my getting him every morning. He only weighs fifteen pounds less than me now and is an inch taller, and our morning routine of excision from slumber is comical. I literally build in ten minutes just to get him out of bed, an act which requires me dragging his legs over the side, body rolling him, cajoling, begging, and occasionally cursing about the damn bus coming.
I never said I was a perfect mom.
I’m going to tell you moms that if you’re ever worried about getting your severely autistic child to do something they completely do not want to do in a life-threatening situation, let your worries go. Those stories about moms lifting cars off their babies are true. As I ran up the stairs I felt a huge adrenaline rush go through me, and I swear that from the time I got to his room and got him out of the house no more than thirty seconds passed.
Wonder Woman has nothing on any of us.
We were all alive. My house didn’t burn to the ground. Ironically, only Justin’s room sustained real damage (figures!) and all will be fixed inside of a month. A terrible accident ends up only inconveniencing us.
We are lucky as hell and we know it.
This post will be a bit rambling today as I swear my brain is still processing everything, but so many things came out of that night. Our neighbors are amazing. Our town’s police and fire workers are incredible, compassionate professionals. I learned that while waiting to see if my house would burn down that I have irreverent thoughts, like wondering if Justin thinks firetruck Santa is at our house and is pissed that we’re not hosting him.
Sarah Silverman’s “bygones” flitted through too.
I remembered that sometimes shit happens.
I remembered that when you can, it’s important to forgive.
But the most amazing thing that happened that night was my children.
Both of my boys are on the spectrum. One has OCD as well, the other ADHD. Both love their routines, although my high-functioning kid can go with the flow.
I will share with you that going with the flow is not my eldest son’s favorite thing.
When we got to my neighbor’s house, my youngest son asked for tv, plopped on the couch, and said he couldn’t wait to tell the kids at acting camp about this.
To Zach, life is always an adventure.
But the kid who stole the show was Justin. I will tell you as we made our way across the street to our neighbors’ house, after knowing we were all safe and out of the house, that the first thought I had was “how the hell am I going to keep him here.” And at first, I was right. Justin takes medication that makes him sleepy, and all that kid wanted to do was go back to sleep in his own bed. We had entered the house through the garage, and all he kept doing the first five minutes was lead me to that door, and put my hand on the knob.
Who needs words?
After several minutes of this (and realizing this could last for several hours) I lead my kid to the front door . I shifted him to the side windows, pointed to the fire trucks, and said “Justin, our house is on fire, it’s not safe to go home now.”
He stood there for another minute, walked over to the couch, and laid down.
This may not sound momentous, but it is. Even a few years ago there would have been a meltdown of epic proportions, with me body blocking both exits until midnight or until he wore himself out. The thing is, it’s not that my boy doesn’t understand what we’re telling or asking him. It’s that Justin wants what he wants when he wants it, and until fairly recently trying to explain to him why he couldn’t have a sixth soft pretzel just didn’t work because he didn’t give a crap.
I secretly think he’s just an exaggerated version of me. That is just how much I love carbs.
But this time my boy simply stopped protesting, and the kid who barely sleeps anywhere other than his own bed conked out beautifully on the couch.
And later, just to be super amazing, when we got back in the house and he went to his room and we showed him the damage and told him he couldn’t sleep there, damned if that kid didn’t turn around and hightail it to our bedroom and throw himself under the covers.
We’ll just gloss over the fact that at 5:10 AM he decided it would be super fun to play on the computer.
So if you’re wondering what my point is (I warned you this was rambling, it’s your fault if you’re still reading), there are several.
My kids are awesome.
All the hours of Early Intervention, the amazing school practitioners, the outside therapists, our insisting that Justin try new things and learn to accept “no” paid off.
That despite this work we wouldn’t have had the same outcome even a few years ago- he was developmentally ready to accept his favorite pastime after eating was denied him, and he got over it.
I’ll say it one more time- my kids are awesome.
They surprise me, move me, and make me proud every day.
I couldn’t be more proud.
I love the hell out of them both.
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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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