June 17, 2019
Thank You to Veterans Memorial Middle School
To Mrs. Stockhoff, Mrs. Caruso, Mrs. Reilly, Ms. Estelle, Ms. Bearse, Ms. Byrne, Ms. Clinton, and Ms. Berry at Veterans Memorial Middle School,
I’m writing this post to thank all of you for helping get Zach (and me) through his first year of middle school.
Honestly, I think the transition was harder for me than for him.
In general I’ve found middle school to be something that most students just hope to survive, but Zach actually loved sixth grade and can’t wait for next year.
He did beautifully this year, and this is in large part to your collective excellence and devotion to your craft. You guided him when he needed it; reined him in when he required it; and most importantly, made him feel valued, and that he had a voice.
When there were blips in the road you worked with him to conquer them, with professionalism and compassion. When he excelled, you were there to congratulate him.
You answered my sixty thousand questions promptly and respectfully. For that, I am truly appreciative.
I am so grateful he had all of you to instruct him this year. He came home every day enthusiastic about school, often quoting you when describing his day. He found your classes to be fun, informative, and challenging in a way that kept him engaged, not frustrated. Your instructions and deadlines were clear, your expectations fair. Your assignments were creative, and often thought-provoking. You encouraged him always to do his personal best, and fostered independence in his choices and actions whenever you could.
As a former educator of this age group, I can honestly say I was always impressed.
While all of these things were absolutely wonderful, what I appreciate the most about every teacher who crossed his path this year was how much you “got” my boy, and that you clearly liked him.
That means everything to him, and to me.
I’d just like to say a huge thank you to everyone who instructed him this year. I wish all of you could move up to seventh grade with him (fingers crossed!), but since that seems unlikely, my hope is that he finds the same creative, compassionate and excellent instructors in the years to come.
Thank you for all you do for our kids!
Kim McCafferty
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June 10, 2019
Someone Special Needs You Annual Walk
Twelve years ago this fall, when my severely autistic boy was four, a flier came home from school in his backpack. I skimmed it and almost tossed it, as the thought of joining any kind of group a half hour away at that point in my life seemed pure folly. I had a four-year-old autistic son and an infant at home, and as much as I liked to do things with Justin and get him out into the community as often as possible, this seemed a bit out of my reach.
And yet, the group activities for autistic kids were held in the building behind my church, a venue I was confident I could find (half the battle for me). I put it on my “possible” list of things to do, and when the day approached, I drove out to Colts Neck on a Thursday night and hoped for the best.
Thus started my love affair with Someone Special Needs You.
For years Vince and Gina Scanelli held monthly events where autistic children could come, do crafts, eat, play, and feel free to be themselves. Justin generally behaved at these events where he was paired with a buddy (usually a lovely teenaged girl, which he enjoyed), giving me the opportunity to network with other parents. Sometimes there was a full-fledged carnival; most years trick-or-treating in the church’s graveyard; and Santa never failed to pay a visit. It was an hour I looked forward to every month, and I am certain Justin did too.
Over time SSNY expanded to include adults, and its focused shifted as well. Now there are only two nighttime events held annually (a full-fledged yummy Thanksgiving meal and a visit from St. Nick), but Vince and Gina use the money raised from fundraisers to plan wonderful events for autistic individuals and their families. Last summer they took thirty-seven autistic adults and children and forty-three caregivers to Hershey Park for a weekend, a wonderful trip particularly as some of the adults had not been on vacation for years. This past January over one hundred individuals were treated to Medieval Times for an evening (both of my kids actually enjoyed the event, a miracle!), and it was wonderful to see how excited they were to witness jousting and eat some really good chicken (it’s all about the food for me).
I’m writing this week to tell all of you about their annual fundraiser, a walk they traditionally hold in Spring Lake. This year it is Saturday June 15th from 9:30 to 12:00 at the intersection of Warren and 5th avenues (you will see everybody gathered, you can’t miss them!). My youngest son and I have attended almost every year and continue to support this organization and all the good work they do. Vince always puts the money to good use, and I am confident he will use this year’s take to fund yet another great trip or event for autistic adults and their families in the future.
The link to their website is here: https://ssny.org/. My youngest and I will be there next week, hope to see you too!
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June 3, 2019
The Shift
Recently I had the joy of watching my youngest son achieve his black belt in karate, a culmination of six years of hard work and about six months of intense training. The exam took place over two days, and to say finding out if he passed or not on that last day was a cliffhanger was an understatement. I truly wasn’t sure how he’d do until the last second when he was told he earned it. Zach has been fortunate to achieve several great goals lately, but I will confide in all of you that this one truly meant the most to me, and more importantly, to him.
Last week my son who is sixteen put two words together in a “sentence,” and I am equally proud of my eldest boy as well.
When I was pregnant many moons ago, I had dreams for my future kids. I thought it was reasonable they’d be decent human beings, go to college, support themselves, and have love and friends in their lives. Although I wanted them to be successful, the latter goals remained most important to me. I had learned about the perils of ambition from the parents of some of the students I taught, and I constantly reminded myself when I was growing my first child to put an emphasis on his emotional well-being as he aged.
Eventually, my traditional dreams for my eldest had to change. Justin was diagnosed with autism at the tender age of seventeen months, and I think I knew right around his fourth birthday that despite years of early intervention and a wonderful school program that he was destined to remain on the more severe end of the spectrum. To tell the truth I grieved much more then than I did when he received his diagnosis. I had so wanted him to have the opportunity for the trappings of the life his parents had had- college, driving, first love, children, and a career. I can tell you that I’ve never completely let go of that sadness, and probably never will. It is tempered however by the fact that I am certain Justin does not feel like he is missing out on these things. He is truly happy with his DVDs, his computer time, and an occasional outing.
Those dreams will always be mine, not his.
I will tell you that one thing that has helped me all these years, and I am certain it came to me with ease from having been a teacher, was to recognize that his accomplishments, no matter how small they might seem, are as important as the typical childhood accomplishments we equate with success. I made a shift in my thinking over a decade-and-a-half ago, and that shift has been instrumental in how I view my son. We have truly celebrated his achievement over these years- the success with potty training, his ability to read simple sentences, his mastery of typing simple phrases on the computer, his ability to sleep through the night. Last week, it was two words together- “more water.”
And trust me, they were beautiful to hear.
I can honestly say I was as thrilled to hear those clear syllables as I was to see Zach receive his black belt and take his oath. Justin’s accomplishments come from extremely hard work and much practice, and mean as much to him, and to me, as his brother’s. Making that shift many years ago to recognize how important Justin’s achievements were, no matter how simple they seemed, was integral to my relationship with him.
This shift allowed my pride in my boy to bloom.
There will be setbacks with both boys along the way, and to my mind, some failure is good. It’s what you do after you fail at something that is far more important than not reaching your goal. With autism many things come in cycles, and I’m sure that there will be some regression with my eldest at some point along the way.
But I’m betting there will also be goals achieved, milestones attained, struggles surmounted.
And I can’t wait to see how all of it plays out.
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May 29, 2019
Paying it Forward
Recently I celebrated the trifecta of weekends- my anniversary, Mother’s Day, and my eldest son’s sixteenth birthday, all within twenty-four hours.
I am really quite tired.
I have a teenager with severe autism, OCD, and tic disorder, and over the years I’ve never really known how things would go on any given holiday. There have been years when we’ve considered it a victory if we just made it through whatever meal we were supposed to be enjoying. There were years we wouldn’t even make it to the meal without weathering some sort of crisis.
I will admit there have been a few Christmases so soul-suckingly hard I’ve ended the day in tears, and I am no longer a big “crier” anymore.
I have to say however that this past Sunday, both Mother’s Day and my son’s birthday, were as close to perfection as one can get in an autism family. Some of it was due to my son’s behavior.
And some of it was due to the kindness of a stranger whose name I will never know.
That Sunday was a rainy mess, but I know my boy loves to get out of the house, so when I got back from church I decided to try to brave our town’s iHop and give lunch a go. We got there and were told it would be a twenty minute wait, but we were lucky to find a spot to sit, and Justin seemed to understand we had to wait for a table. After he rejected my attempts to entertain him with my phone we sat in companionable silence, his vocal stims punctuating the semi-chaos around us, with nobody seeming to mind.
One of the many reasons I love this town.
Within half an hour we were seated, and then the true test for Justin began as we waited forty minutes for our food. After twenty he kept pushing my hand to touch the one menu left on the table (Mommy is magic and will get me fed!), but I was able to keep him calm, and eventually the food came.
He ate all of his and half of mine, but the kid deserved it.
I was already feeling this day was a victory as Justin had waited in two separate places for over an hour for his food and not had a meltdown, but we weren’t done yet.
That’s when I found out some kind souls had picked up our check for us. When I wanted to thank them, our server told us they were already gone.
I’ve heard of things like this happening in our town before. My mom had this gracious effort extended to her once at Friday’s when she was with Justin, and again, she was unable to thank her patron as she had left. I will tell you it brought tears to my eyes, and I wondered what they were thinking. Did they believe I was a single mom trying to share a successful meal with my boy on Mother’s Day?
Did they have a relative with autism?
Were they just awesome people?
I know at least the latter was true.
I will tell you that this act of kindness meant a great deal to me, in large part due to the fact that someone had truly seen me and my boy. Over the years as I’ve continued to bring Justin out into the community I can tell you honestly I have had very few uncomfortable experiences with strangers. Justin has had meltdowns when we’ve been out, but more often than not if I’ve had any interaction with anyone it’s been where they’ve been offering me assistance, not commentary on my parenting.
I’ve been lucky, I know.
But the truth is I often feel invisible when we’re out together. Justin has vocal stims and physical tics, and it’s obvious within seconds of looking at my boy that he’s not from the neurotypical tribe. I would say that most of the time when I’m out with him if I make eye contact with anyone their eyes quickly slide away. On a few occasions I get a smile, but more often than not it’s like we’re just not there.
Trust me, it hasn’t devastated me, I’ve had far more important things to worry about. But just once in a while, it’s nice to have that moment of recognition with a stranger. It’s just nice to be seen.
And that Sunday, we were seen.
And it felt great.
On the slight chance that whoever did this for us is reading this blog, I thank you from the bottom of my heart. You made my Mother’s Day, and made Justin’s day even more special.
I can’t thank you enough.
And I can’t wait to pay it forward myself.
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May 23, 2019
Sweet Sixteen
This month you turned sweet sixteen.
And truly, how sweet you are.
I admit, when I held you in my arms when you were a baby and envisioned your future, I never imagined this.
I thought at this point you’d be answering me (if you answered me at all) in grunts and monosyllables. I thought we’d begin teaching you how to drive. I believed we’d start those college discussions. Maybe you’d share with me the amazing character traits of the girl you like.
Then again, maybe not.
We are not living any of my dreams.
Instead, we are living yours.
Your dreams include a steady diet of YouTube videos of Baby Einstein and Classical Baby. Your preferred activities center around a plethora of different DVDs from your past. The closest you will come to driving is your participation on the Hertz Rent-a-car site (you have conquered Monmouth County).
Your life is pretty much as it was when you were a toddler, except for the fact that you can type in your own internet searches, a skill for which I am extremely grateful as it brings you so much joy.
My goal has always been for you to feel joy.
I won’t lie to you and tell you I gave up those dreams for you without a fight, or that the fact you’ll never realize them still makes me sad. Some people will support me on this, some will vilify me.
It’s okay, because sometimes at the end of the day my feelings about you were all I had left.
It’s okay, because after sixteen years of raising autism I am pretty inured to what people think.
My solace is you won’t miss the trappings of a neurotypical teenaged life. You won’t pine for the freedom of a car, a particular red-headed girl, or to leave your parents behind.
I’m pretty sure you’d live with me forever if you could. You are always happier at home, with me.
That is a dream I wish I could make come true for you.
I’ve accepted that my heart will always simultaneously ache and soar for you. I am so grateful, grateful beyond words, that we have weathered your latest crisis and for the better part of a year you have returned to you ebullient, loving self.
I missed you. And as difficult as it was for me, I can’t even imagine how difficult your suffering was for you.
I know there will be more challenges up ahead. So for now I am reveling in our “sweet spot,” my sweet sixteen.
I hope the coming year brings you continued joy.
I hope your seventeenth year sees you safe.
I wish you love, laughter, and peace.
I love you.
Happy birthday to my beautiful boy!
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May 12, 2019
Mother’s Day
Oh, my beautiful boys.
Justin, sixteen years ago this month, you made me a mom.
Four years later, Zach you sealed the deal.
There has been no role in my life, nor will there ever be, more important than being your mother.
To say it hasn’t always been smooth sailing would be an understatement. It took me a long time to understand your needs and wants- autism often obscured your desires, left me feeling confused and incompetent.
But slowly, over time, I learned how to navigate your differences.
We forged a bond, cemented in struggle, trust, and love that can never be broken.
I want the world for you both.
Justin, in your adulthood I want a safe place for you to live, a room for your 8,000 toys. I want a fulfilling day program for you, kind souls to care for you.
I want your life to be safe, and dare I say it, fun.
Zach, for you I want the trappings of a more conventional life, because that is what you have always wanted.
I want you to go to college. I want you to drive. I know you will hold a job, have a wife. I can’t wait to meet my grandkids.
Well, maybe I can wait a while for that.
I want you to know I will always be in your corner.
I will always fight for you.
There is nothing I wouldn’t do for the two of you.
I love you both so much.
Thank you for making me a mom!
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May 7, 2019
Paul Prendergast Karate
After months of training, and six years of lessons, this past weekend my son officially became a black belt in karate.
I am insanely, ridiculously proud of him.
Zach is not really a “sports kid,” and a number of the requirements for the seven to eight hour exam were arduous for him. Among other requirements he had to complete numerous situps and pushups, five hundred kicks, and most difficult for him, a two mile run.
I trained with him. I think for a good deal of it he hated my guts, but he agreed it paid off in the end.
There were times over the past six years I wasn’t sure Zach would be able to go the distance. Sometimes his concentration was lacking- at times he didn’t want to practice. Overall however he was able to focus on the goal he wanted, work incredibly hard for it, and never give up.
And even with all that hard work he never would have achieved this if it weren’t for the vision of Master Paul Prendergast and the dedication and patience of the men and women at Paul Prendergast Karate.
During Zach’s initial years at karate he was not the easiest pupil some days. When he was really little he lacked focus and was impulsive, neither of which are really conducive to advancing in ranks. With time and maturity he came into his own, but I am confident he never would have gotten to this place without his instructors.
Their compassion and commitment to Zach lasted the entire six years he’s been at the school. They knew instinctively when to push him, and when to hang back and let him figure things out for himself. He was always encouraged to be his best, and to work at his own pace during classes. The curriculum does not just pertain to karate moves however – it also has a focus on self-betterment, including school achievement, behavior, and character development, all of which helped Zach become a more well-rounded person.
Zach was always told he could achieve what he wanted as long as he dedicated himself fully to it. And I am happy to say after these past two weekends, the staff at PPK were right.
I have felt for years that there are two activities in Zach’s life which will help him be confident in adulthood. One is scouting, which among other things has taught him most importantly to self- advocate. The other is karate, where he has not only learned to defend himself, but has learned how much he can stretch himself to achieve goals that at times seemed out of his grasp. I truly feel his time at karate has helped prepare him for college, enhanced his academics, and increased his self-confidence many times over.
I can’t recommend this program enough for any kid who is different, who desires self-confidence, or needs to develop self-discipline.
And I can’t recommend enough the staff at PPK for helping my son achieve all of these things.
Thank you Paul Prendergast Karate!
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April 16, 2019
Early Intervention
Maybe it was the “Light it Up Blue” campaign shared by a friend that came across your Facebook feed.
Maybe it was the teenaged boy on the swings at your local playground who vocalized so loudly as he seemed to climb perilously close to the sky.
Maybe it was the girl in the movie theater who rocked back and forth one row behind you in the movie theater last weekend.
Maybe it was your growing suspicion that your child is on the autism spectrum too that is making you think about seeking help.
As a veteran mom with two boys on the spectrum all I can say is listen to your instincts, and make those calls.
My eldest son was diagnosed at seventeen months, which was considered to be very early back in 2004. Quite honestly he could have been diagnosed earlier if our pediatrician didn’t take a “wait-and-see” approach, claiming he was following in his father’s footsteps with his lateness to talk. Still, seventeen months was a gift, and unbelievably we were able to get an appointment with a developmental pediatrician four weeks after a devastating pediatrician’s appointment where my son’s doctor thrust a bunch of mismatched articles with “autism” in the title, basically shoved us out the door, and wished us luck.
No points for compassion awarded there.
My husband and I were able to put a program in place for him within a month of that terrible day. Unfortunately Virginia’s idea of Early Intervention at that time (and still could be now) was to show up a few times a month, “train” me, and let me get on with it. Being a former teacher (albeit one who had taught mostly neurotypical fifth graders) was an invaluable asset in cobbling together a small team of therapists plus me to conduct thirty-five to forty hours of ABA monthly. We were able to work a great deal with him at a very tender age, and I truly believe those early years of therapy prior to starting school at three-and-a-half were instrumental in helping ready him for the structure and rules of acquiring an education, imperative in opening him up to the possibility of learning skills.
After my second son’s regression at eighteen months we were living in New Jersey, where Early Intervention’s approach is totally different. We were able to get thirty-five hours weekly from two different agencies, and took a less structured road with my youngest. He had a year-and-a-half of therapy prior to entering school, and although it was difficult for him at first he acclimated quickly, which I strongly believe was due to the instruction he received as a toddler.
Yes, the theme here is get help as early as you can.
The truth is once you’ve made that leap to get your child evaluated it may take months to get an appointment with a good developmental pediatrician. It will definitely take a few months to get your child evaluated and started on therapies through Early Intervention.
If you have even the slightest doubt that something is different from the norm about your child’s development, make those calls as soon as you can.
I know it made a difference in my sons’ lives. My eldest still resides on the more severe end of the spectrum, and also has OCD, tic disorder, and intellectual disability. Despite all these challenges he remains one of the happiest kids I know.
My youngest has more of a “traditional” life, complete with mainstreaming in school, friends, and many different activities. He too is happy with who he is, and loves his life.
If you have the slightest concern about your child’s development, seek help as soon as you can. I know it made a difference in my sons’ lives, and the lives of many other children on the spectrum. Controversies may rage forever about different autism treatments, but one seems to remain unscathed- early intervention.
Make the calls.
Ask people for support.
And while you’re dealing with all of that, make sure you take care of yourself too.
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April 9, 2019
Take Care of Yourself
Every year during Autism Awareness Month I try to write about different themes, ranging from early diagnosis to adult life issues. It’s never a struggle to come up with topics (there’s always so much to write about), but one topic always finds its way into my writing, and it’s one dear to my heart.
No matter what stage you’re in with your child’s autism, make sure you take care of yourself.
There have been a number of times during the years with my two kids on the spectrum that I have not followed my own advice. After Justin was diagnosed at seventeen months I threw myself completely and utterly into his ABA program, and most of my needs were put on hold. When our second child, Zach, was also diagnosed, I again put my needs on hold and immersed myself in his daily program for the next year-and-a-half until he started pre-school. Periodically throughout the years we have gone through soul-sucking times with our oldest- sleep issues, eating issues, aggression issues, and most recently, discovering that he’d developed tic disorder.
If I’m being completely honest, I wasn’t taking my own advice during most of these periods.
I have learned over the years that when my kids are really suffering I am not very good at taking care of my needs, but I will say during this last difficult period with Justin I improved from past experiences. Fun was pretty much off the table, but I was able to make sure I slept, got to those doctor appointments, and at least took care of basic needs until we got a diagnosis and a treatment plan. I did better with this last crisis, and although I’m hoping for calmer waters as we move on the truth is autism issues are cyclical, and I’ll probably experience soul-sucking times again down the road.
But this time, I’m better equipped to deal with them.
It is so important to figure out what you need when your family is in crisis with your child, or even just going through incredibly difficult times. For me I’ve learned that sleeping and eating are essential (when my kids are suffering that is pretty much the only time in my entire life I forget to eat), and I try to simplify my life whenever possible so I can focus on them. I have learned over the years however that often this is not enough- that I need to focus on that fact that we will weather this crisis too, just as we have others in the past. It’s important for me mentally to remember how much we’ve conquered as a family- that we do have wonderful periods with the boys, and fun times will come back again (and one of my needs is definitely having fun).
And I’m proud to say we had some family fun just this past weekend with our youngest when we took him to Washington, DC, his parents old stomping grounds, for a weekend just about him (and a little bit about his parents too).
It literally takes a village for Jeff and I to get away for a weekend (no less than four adults were in attendance this past weekend to cover Justin during our 72 hour getaway), and it was a tremendous amount of work on everyone’s part. I literally started planning it three months ago so we could acquire the child care, and it was worth every minute of the planning I needed to do to make sure Justin’s needs were met and our other son had a fantastic trip. Our weekend gave me and my husband some time together out of our house, and gave us some important time with our youngest that made him the priority. One of my needs is making sure Zach has a great childhood, and this weekend I felt like we achieved even more memories toward this goal.
In addition, I got my DC fix too.
Wherever you are with your autistic child, try to take care of yourself too. As his or her parent you are the most important person in their life- if you’re happy, there’s a better chance they will be too.
And when you can, and this is so important, find your fun. Make a plan, put anxiety on hold if you can, and do something great for you. It’s important for your health and well-being- and both of those things are integral to the well-being of your child as well.
During Autism Awareness Month and beyond, remember to always take care of yourself too.
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April 2, 2019
World Autism Awareness Day: A Call for Compassion
Twelve years ago this month the United Nations passed legislation to establish World Autism Awareness Day. Over the years each day has focused on a specific theme- one year it was “empowering women and girls with autism;” one year “inclusion and neurodiversity;” another year celebrating the ability within the disability of autism,” all important and necessary issues which need to be addressed. I’m proposing a new theme for this year, one that includes all who dwell within the extended autism community.
2019: “A Call for Compassion.”
It’s beyond time.
Over the years as Autism Awareness Month has approached I’ve written on a variety of topics. I’ve moved on from autism awareness (which at least in my area of New Jersey I believe we’ve definitely achieved) to autism acceptance, touched on moving from tolerance to celebration. Each year I’ve called upon those not within the community to see my sons and other autistics and not just accept them, but embrace their differences, and celebrate their accomplishments. I’ve asked for compassion not pity when they (and I) have struggled, and I’ve seen such a positive shift in public perception since my eldest son was diagnosed fifteen years ago.
At least in this area of the Garden State I’ve mostly encountered knowledgeable and welcoming souls- most of the time when I chat with others about my boys I am told about a neighbor, a friend, a child they’re raising who is similarly affected. I have only once or twice in a decade-and-a-half encountered negativity regarding my boys- a nasty look, a muttered epithet, aberrations I’ve quickly forgotten. I know however there is still much work left to do to educate others about autism, to enlighten them to the beauty, the struggles, and the accomplishments of our children and adults. I will never stop talking about mine and how proud I am of the men they are becoming.
Yet there’s still work left to do- and I believe it has to start with all of us.
Over the years as a parent to two autistic children, one on the more severe end of the spectrum and one on the mild, I have read the work of many parents, autistics, and professionals who work with the autistic population. So much of the writing has influenced how I think about my boys, both autistics’ perspectives and those of parents as well. What’s been disturbing to me however is the huge divides across the community, schisms which don’t seem to be healing any time soon.
Those who vaccinate.
Those who don’t.
Those who advocate autistic self-determination.
Those parents of severely affected children who lament self-determination’s impossible dream.
Those who regard inclusion as every autistic’s ultimate goal.
Those who believe inclusion is not integral to their child’s progress or happiness.
Those who claim neurodiversity is the only path for all.
Those who claim a cure is the only sensible solution.
What disturbs me most is the black-and-white nature of both people’s writings and opinions. Time and time again I see no room, no space for introspection regarding each autistic individual’s needs as well as parents of autistic children’s needs and wants. From some writers I see the opinion that all children should be cured. From some, they are all perfect just the way they are. Others advocate that adult children should always be included in the community; some state they have no interest in socialization and parents should be allowed to create the adult facility that suits them best. Some insist all autistics should be able to forge their own adult path. Often parents grow increasingly frustrated when the needs of their severely autistic children transitioning to adulthood, those for whom self-determination rests exclusively with what they want for lunch or which DVD they’d like to see, are ignored.
But even more disturbing to me than some people’s one-size-fits-all approach is the commentary I’ve seen on blogs, articles, and Facebook pages. I’ve seen autistic people attacked. I’ve witnessed parents labled as ableists and vilified. I’ve watched thread after thread on Facebook elongate with hatred, dismissal, and hurt.
It’s time for all of us to stop attacking one another and start working toward what I know is everyone’s underlying goal- happy, productive and safe lives for all who dwell on the spectrum, no matter how mild or severe.
And no, I’m not looking for one giant kumbayah people; just a little progress.
Here is the truth.
Unless you’re autistic, you don’t know what’s it’s like to be autistic.
Unless you’re raising a severely autistic child with behavioral problems, you don’t know what that challenging life is like.
Unless you’re raising a mildly autistic child, you don’t understand the worries and concerns that embody the loving of a high-functioning son or daughter.
Unless you’re grappling with the difficulty of making “entire life” decisions for your adult child, ones that must last decades after your death, you don’t comprehend the enormity of this quest.
Ultimately, self-advocates only know what’s best for them.
Ultimately, each parent of an autistic child is the best arbiter of what’s necessary for their child, and their child only, if they can’t advocate for themselves.
We need to help one other, not break each other down.
So, I’m advocating this.
At least try and understand an individual’s viewpoint that diverges from yours. You might not agree with their ideas, but you might learn something new about your beliefs from listening to others’ opinions; in stating yours passionately but without venom someone else might come to understand your point of view as well.
This is where compassion, instead of cruelty, can purchase ground and grow.
And if you cannot find any commonality, if people’s positions are so thoroughly entrenched there’s no chance of comprehending a person’s unique and intensely personal experience with autism, what next?
I suggest instead of engaging in a discussion or written war with someone who will never try to comprehend your point of view and thinks they know what is best for you or your child, walk away.
People push my buttons too, it’s the hazards of being an advocate and a writer. But over the years I’ve tried to take that passion to prove my point and turn it into action, not an attempt to win over someone who doesn’t want to even entertain my point of view, someone who wants to influence my decisions for a child they’ve never met.
Take that energy, and instead research different living options for your about-to-be transitioning adult.
Spend a minute sharing your story with a mother of a newly diagnosed child and offer practical suggestions to help that family find peace.
Try again to get your son potty-trained.
Consider volunteering for an autism organization.
Instead of engaging in vituperative, ultimately unproductive banter, take a moment and do something kind for yourself.
It’s time we work not against one another, but together in our unifying goal.
It’s time to heal.
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