April 2, 2020
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 6:20 am by autismmommytherapist
Today is World Autism Awareness Day, thinking of all families during this difficult time!
I walk into the kitchen area holding my Tupperware, material for one of the many activities I’ve been doing with Justin, my severely autistic teenager (he matches lids to bottoms better than I do). My eldest is now heading upstairs for some computer time well-earned, and my youngest is on hour three of virtual homeschooling. I take a moment to reflect upon how grateful I am that the last two weeks have gone so smoothly, and treat myself to a piece of chocolate.
My priorities are still intact.
There were a few glitches when I started homeschooling Justin, but the staff at his school have been wonderful with communication and I think I’ve figured them all out. I’ve been reaching out to my group of friends with autistic children, and there seems to be a unanimous consensus- everyone has adjusted and is doing really well. Autistic kids and adults are not really known for their capacity to adapt to change- many love their routines religiously, and the virus has completely disrupted that sense of continuity for them. Like many of my friends I’ve worried that Justin would have meltdowns when he realized he wasn’t going to school or anywhere- years ago, this would have completely been the case. Instead, like my friends’ children, he has completely gone with the flow, even complying to take walks around the neighborhood and not insisting on getting into my car.
I’m grateful for that too.
The truth is I’m not surprised by how well it’s gone for me and my friends. Being autism families, most of us have all spent a great deal of time in our houses at some point in our lives. There were years where there were only a handful of places I could take Justin due to his behaviors, and certainly we were not going out as often as most of my friends with neurotypical kids. I remember when we came up to Jersey from Virginia to house hunt I told my husband we’d better really love the house we chose because we’d be spending a lot of time in it, and that has proven to be true. And while my ability to get Justin out has increased over the years, his desire to go certain places has decreased. We are home a lot. We’ve had a lot of practice with self-quarantine.
We’ve also had a lot of experience with adversity.
While I am thrilled with our success and the success of my friends’ families, I am under no illusion that shelter in place has gone so well for all the families in our community. I have read many posts online of families who are really struggling. There are those with higher functioning children and adults who don’t understand why they’re not going to beloved schools and day programs. There are more challenged adults and children bereft at their inability to go to a favorite restaurant or movie theater. There are children who have begun to regress in skills, adults exhibiting aggressive or self-injurious behavior.
There are many families not posting pictures of their fabulous social distancing hikes.
I’m writing this post because there are families out there who are truly struggling, who are even more isolated than they were two weeks ago. There are many with children and adults who are truly suffering with these restrictions, who are unable to comprehend why mom and dad can’t tell them when this will be over.
I want you to know you are not forgotten.
I want you to know you are strong, and you will get through this.
I want you to remember that someday, while we will have a “new normal,” this will be over.
We see you.
We remember you.
Don’t give up.
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April 2, 2019
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 5:31 am by autismmommytherapist
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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April 30, 2018
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 12:02 pm by autismmommytherapist
Another April 30th, another Autism Awareness Month in the can.
I know a lot of people have an issue with this month, as some feel they are brutally aware of autism 24/7, and I get that. Some have issues with the name of it just referencing awareness, and not acceptance or even celebration of autistic individuals. A few of my friends have had issues with their kids’ private schools asking students to wear blue since it’s “all autism all the time” there, and I can see their point.
The truth is, I pick my battles, and none of this bothers me. Anything that might help a stranger look upon my child with admiration and not scorn is good by me.
This year I’ve focused my writing for this month on caregivers of autistic individuals, and I’d like to wrap up this series with a quick vignette and a shout out particularly to parents whose kids have just been diagnosed (of course if your kid has just been diagnosed you probably don’t have the time or energy to read this, but come back to it if you can).
One of the most difficult things for me about Justin’s autism was letting go of what I thought should make him happy, and embracing what did make him happy. Before he was diagnosed at seventeen months my husband and I bought him all the toys we knew our other friends’ kids had liked, and we waited eagerly to see him playing with them. He eventually did, but not in the way we thought he would. Trucks and cars were placed in careful lines. Toys were rotated and never played with in a traditional way.
Imaginative play was only a dream.
Getting his diagnosis was somewhat of a relief, as now we knew for certain what he had, and we had a game plan to get him what he needed, which eventually resulted in a move north. Our new location afforded him wonderful early intervention services, an excellent education at a school which knew how to care for him, and proximity to family and venues Justin would eventually like.
Notice I used the word “eventually.”
When Justin was younger all he wanted to do was stay in our house and spin things. I pushed him to go on outings- first, it was just walks in his stroller that he eventually began to love. After we moved to the Jersey shore and had access to boardwalks and Great Adventure and beaches (oh my!) I began my quest to acclimate him to these places, to help him with his sensory overload and crowds and waiting on line (still working on that one but it has improved greatly) so that he could have a life outside of our home.
I won’t lie to you- these outings were work, the way that Disney is a working vacation. Some days we only made it to one ride at the boardwalk, or half an hour at the beach. I have little half moon scars all over my body from his protests that it was time to go home- I did not always escape our outings unscathed. After some time and many trials Justin did learn to love most of these places, and I learned to read his needs and create routines to tailor each experience to him so that our little excursions made him happy.
And the key to all this acceptance truly was seeing our trips from his perspective.
Justin will be fifteen in a few weeks. I have it on good authority from my friends with teenagers that their boys are really into girls right now (okay, he may have that in common with his neurotypical peers), that they’re starting to think about colleges, and all are yearning to drive and slough off the shackle of their parents. On the other hand, my fifteen-year-old still loves Baby Einstein DVDs, adores roaming throughout New Jersey on the Midas Rent-a-car site, and thinks YouTube is swell.
Again, he may have the latter in common with his NT peers too.
The truth is over the years I’ve learned to meet him where he is, not where I think he should be. This doesn’t mean that I’ve given up on him, or I don’t wish he would have all those pretty options in his life. I will wish he had those choices until my dying breath (which I’m shooting for to happen at about 120, we’ll see how that goes.)
It’s just that in order to have a connection with my son, and we have a profound one, I needed to pay attention to what brought and brings him joy, and capitalize on that moment.
I had one of those moments yesterday.
Back in the day when I had only one child my mom’s 60th birthday was coming up, so I thought I’d make her a DVD of photos and video clips of her only grandchild. The disc encompassed Justin’s first two-and-a-half years of life, and it was set to songs Justin loved as a child, tunes that held special meaning to us. It’s still a fan fave, and as he has access to it a few months a year I heard him playing it yesterday, his eee’s chiming in with notes from “Somewhere Over the Rainbow” as he gleefully rocked back and forth. I put down my dishwashing (gladly!) and walked over to where he was standing, taking in his ebullient grin.
He stopped rocking, smiled even broader if that was possible, and took both of my hands to dance.
I can share with you that this occurrence does not happen often. In fact, if I hadn’t put down those dreaded dishes I would have missed the moment, as playing the same twenty second clip is much more reinforcing to him in the long run than dancing.
And I am, after all, his mama, not a pretty teenaged girl.
If your child was just diagnosed, I know your world is spinning, and there must be so much you feel you can’t control. If you can, just try to find a moment, maybe it’s only one a day, where you connect on their level with something that brings them joy. If you do that enough you will weave a tapestry of threads that connect you to one another, a relationship you can build upon which will help both of you greatly in the years to come.
We have a profound connection he and I, one I know will last a lifetime because we’ve built on these moments, stretched and elongated them to encompass our love for one another.
Yesterday we had our moment because I met him where he is.
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April 2, 2018
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 1:03 pm by autismmommytherapist
In just a few short weeks it will be fifteen years since my severely autistic son came into the world and made me a mom. His birth fulfilled both a two year quest to bring him here, and a longing I knew would never be quenched unless I became a mother.
In that decade-and-half in which I brought a second autistic child into the world, I have to say I am very, very aware of autism.
I don’t know when exactly I made the shift from wishing for awareness to expecting acceptance to hoping for celebration of my sons’ unique autistic souls. Perhaps it was a few years ago when we were in a lull in springtime, both boys at their best, the two of them happy, safe, and productive. Perhaps it was more subtle than a watershed moment, just a realization that at least in my community my sons’ autisms are not looked upon with pity, but rather with admiration at all they’ve accomplished.
Yes, I know, you’d all like to live here now.
The truth is I’ve moved past awareness and acceptance in my wishes for a post- World Autism Month. It has been at least a decade since an unkind comment or glance has derailed me, years since I cared what anyone in society thought about my severe son’s stims or noises. I can honestly say at least in my little corner of the world people are more than tolerant- they acknowledge my son, speak to him as if he can understand (which he does), and aren’t concerned with his differences.
And yes, I know how very lucky we are.
The truth is I’m past what people think. My focus is now a call for action. I figure I’ve got a good thirty or forty years left on this earth (if I’m lucky), and believe me, I do have a lot of wishes.
I wish for Early Intervention in all fifty states to follow New Jersey’s model of care, where many families receive thirty hours per week of services.
I wish for better group homes for those who cannot achieve independence, programs which are not just glorified babysitting services but are meaningful for those who participate in them.
I wish for more colleges to create programs to support those individuals on the milder end of the spectrum, including both their academic and social needs.
I wish for better medications to help quell the more challenging aspects of autism.
I wish for improved day programs, one of which I hope will both entertain and teach my son new skills as he lives his life.
I wish for insurance companies to make it easier for families to access therapies.
I wish for schools and child study teams to acknowledge the needs of children on the spectrum and not make it so difficult for families to acquire what their sons and daughters need.
I wish for my severely affected son to live in a world where his challenging nature is overlooked for his affectionate and loving soul.
I wish for my mildly affected son to find love and be judged by his actions, not his neurology.
I wish for all the world to celebrate my sons, their kind natures, their inherent intelligence, their unique contributions.
I wish for all autistic individuals to live in a world where they are celebrated.
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March 31, 2017
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 11:07 am by autismmommytherapist
This coming Sunday is the tenth official World Autism Awareness Day, a day in which I could tell you I’ll be “lighting it up blue” or spreading awareness, but in reality I will be severely jetlagged in Ireland and hopefully putting autism on a shelf for a week.
Really, I’ll still have fifty-one weeks and thirty more years to think about it.
In the past nine years I’ve written at least one missive about the day each year, discussing my eldest son’s burgeoning awareness of the world around him, and my youngest’s awareness that he has autism too. I’ve talked about our path from awareness to acceptance and even to celebration (yes, some of you are rolling your eyes, but reading at three and insane organizational skills are the yin to many a yang). I’ve written about how much Autism Speaks has helped us, and how passionately I feel about the boys’ collective progress.
When it comes to autism, there’s always a lot to write about.
When the boys were little, our world was very small. Truth be told I only worried about what was happening in their world, was truly just trying to get through the day, or sometimes the hour. There was no global autism awareness chez McCafferty.
But I’m happy to tell you now, with my kids at ages ten and almost fourteen respectively, there’s room for what I call the “big picture.” Here are some things I’m aware of this World Autism Day.
I’m aware that my eldest, severely autistic and non-verbal son continues to make progress every month of his life, and his courage astounds me.
I’m aware that my youngest has exceeded my expectations in what I thought he’d achieve, that he is “living his dream” as he is fond of telling me.
I’m aware that some days at my house are so difficult they’d never make it on a reality show.
I’m aware that some of our moments are so filled with love and promise some people would not believe I have two autistic kids.
I’m still aware that Betsy Devos needs to brush up on IDEA.
I’m aware that the Supreme Court is my new best friend with their latest ruling on the court case which hopefully redefined a “fair and appropriate education” for generations to come.
I’m aware that I’m nowhere near as patient as I often need to be.
I’m aware that not beating myself up about it is key, and I’m trying my best not to do that.
I’m aware that I will never be at peace with leaving my son for half his life here without me.
I’m aware that my other son will most likely “flee the coop,” and for that I’m eternally grateful.
I’m aware that I need massive quantities of chocolate to get through my day.
I’m aware that sometimes wine is needed to accompany that chocolate too.
I’m aware that this life, both for me and my kids, is sometimes grueling, beautiful, stressful, fulfilling, annoying, and miraculous, all at the same time. I’m aware that autism is not completely gloom and doom, nor puppies and rainbows either.
I am aware of the patience and consistency and boundless love from several villages of people that go into raising my kids.
I am aware and am so grateful for everyone’s contributions, and for my kids, just as they are.
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April 2, 2016
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Autism Speaks, Autism Treatment Network, CHOP, World Autism Awareness Day at 7:21 am by autismmommytherapist
Today is the tenth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.
The great thing is though, the rest of the world is now too.
In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders. I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.” I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.
But I’ve never spoken about one entity that helped us get to that peaceful place. And that entity would be Autism Speaks.
Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor. One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live. Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since. It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.
Needless to say, our gratitude toward Autism Speaks began that day.
We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track. We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.
His momma needs her shut-eye too.
Autism Speaks has helped us financially too. Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia. During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt. Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.
Autism is expensive. Having coverage for necessary therapies is invaluable.
And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family. I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public. I am certain some of that comprehension came from Autism Speak’s global approach.
So today, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys. We have our struggles here still, and I anticipate we always will. But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born. I am grateful to Autism Speaks for helping this family get to a place of peace.
And my wish for you is that you get there too.
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April 2, 2015
Posted in Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, World Autism Awareness Day at 9:24 am by autismmommytherapist
Today is World Autism Awareness Day, and this is the time of year I tend to take stock of the McCafferty clan, and also look back on past years to see what I’ve written about. In former years I’ve penned blogs about amazing autism advocates in our community, written about my eldest son’s burgeoning awareness in the world, and about moving from awareness to acceptance. Yet I realized as I look back at the last few years I’ve neglected someone.
My littlest love, to be exact.
Second grade has been a pivotal year for Zach, one in which he has become more aware both of autism’s limitations and its gifts. This year he has stood up for himself and staunchly denied that autism is a “boo-boo on the brain” to a fellow sibling autism support group friend. He has used autism as an excuse to get out of homework (he was denied.) He has also made the connection that he is a great reader most likely due to autism, specifically the hyperlexia we believe he has, that enabled him to start reading at the tender age of three.
As with everything in life, there’s the yin, and there’s the yang.
We told Zach he had a little autism (compared to his older brother who has a lot) over a year ago, and for months afterwards I expected to have more dialogue with him about it. The truth is he’s only just begun asking questions about his life, which I won’t share here.
But it is abundantly clear that he is aware of his autism, and his differences.
I agonized over whether or not it was the right time to tell him a little over a year ago. But divulging my son’s disorder to him occurred when he asked me if he had autism too, and it seemed the perfect moment to discuss it. At the time we talked about the challenges and “bonuses” autism brought to him; the former of which makes it difficult to focus sometimes, the latter of which I believe has gifted him both with a superb memory for facts and of course his amazing reading abilities. Later that night he hugged and kissed me and went to sleep, business as usual, no more conversation required.
So far, he seems at peace with his diagnosis. My son is proud of who he is. And for his awareness, and most importantly, his acceptance, I am eternally grateful.
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April 2, 2014
Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged autism, autism acceptance, autism awareness, Autism Speaks, light it up blue, obsessive compulsive disorder, OCD, PDD, Pervasive Developmental Disorder, World Autism Awareness Day at 10:39 am by autismmommytherapist
Today is April 2nd, otherwise known as the seventh World Autism Awareness Day. There will be people “lighting it up blue,” people boycotting Autism Speaks by not “lighting it up blue,” and many beautifully crafted posts on blogs and websites talking about autism, autism awareness, and yes, autism celebration.
In my house, at least in the early hours of the morning with my two autistic boys, it will be Wednesday.
Eventually, my sons’ buses will come to carry them away to their beloved schools and I will have time to consume my own beloved Coke 90 and sugar-free chocolate (I know, but every little bit helps, right?). I will have a few minutes to contemplate what I like to call the “state of autism affairs” worldwide, and equally importantly, the “state of autism affairs” in my own home, and what I’ll be writing about. In truth, every year I like to have a theme for my posts in April. Last year I celebrated by writing about exceptional autism advocates in my community. This year, as I approach the ten year anniversary of my eldest son’s diagnosis, I’d like to take a different approach.
I’m going to celebrate the hell out of my kids’ accomplishments. And in doing so, I hope to inspire and offer hope to anyone just coming to terms with their child’s autism spectrum diagnosis.
Ten years ago this fall a kindly developmental pediatrician gave Justin the diagnosis of Pervasive Developmental Disorder (PDD), a label I knew in my soul was just the precursor to the autism diagnosis I was sure would come. Four years later I sat in my living room as my Early Intervention provider told me my youngest son Zachary, following a series of back-to-back illnesses, had lost six months to a year in all areas of developmental growth in a matter of weeks.
The latter reckoning was particularly difficult to deal with as Zach had appeared to develop typically for eighteen months, plus Justin was going through a particularly challenging time as well. I well remember sitting on my couch in my living room, wondering how the hell I was going to continue a hellish attempt at potty training my eldest child while simultaneously trying to help my youngest retrieve the glorious words he’d lost, not to mention what appeared to be the very light in his soul. I recall thinking it was all too much, that my dream of how my family would be was irrevocably shattered.
The dream, by the way, was simply that my boys would be safe, productive, and happy.
On this blog I will never promise anyone their lives and those of their autistic children will definitely get better, as I don’t know all of my readers’ particular situations, and honestly, better is a relative term.
I will say this however.
I have two children with autism. One is severely affected, and will require life-time care. One is considered on the milder end of the spectrum, and one day may well be president. In their early years both suffered, truly suffered from autism.
Now, for the most part, I can honestly say they don’t.
We still go through difficult periods with each child. At times Justin can be caught in a vicious OCD cycle, difficult to reach, almost impossible to placate. His long-buried aggressive tendencies can rear their ugly head despite the behavioral techniques we try, rendering our family life challenging at best. Zach goes through periods where he truly struggles to focus both in school and out, and his impulsivity can stretch us thin. I’m not saying it’s a walk in the park here by any means.
Again, I will never promise any of my readers things will get better, although I fervently hope all families can reach the sanctuary of acceptance, and yes, at times celebration, that this family has.
But truly, after years of therapy, acceptance, maturation, and simply love, both of my boys are predominantly happy. Both thrive even working through, and sometimes because of, the lens of their respective diagnoses.
Both, in their own respective ways, tell me frequently that they love their lives.
And to me my friends, that is everything.
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April 1, 2012
Posted in Life's Little Moments, My Take on Autism tagged autism awareness month, light it up blue, POAC Autism Services, World Autism Awareness Day at 9:25 am by autismmommytherapist
“Mommy, can you have a little autism?” my youngest son asks, all while sitting at our kitchen table twirling a giant plastic T-Rex around by its tail, a toy I am certain will soon end up landing on my face. I think quickly about how I want to respond to this, and I say “Sure honey, some people with autism can talk just like you do”, because the issue Zach keeps coming back to over and over is ‘will Justin ever talk’. Apparently this satisfies my boy, because he forgets I’ve just asked him not to fling that huge, disturbingly life-like creature in my general direction. This time, however, the outcome for his “pet” is not so wonderful.
Clearly, just like in the Jurassic Period, tyrannosaurus rex still can’t fly.
After I’ve rescued his friend from the floor (and applied no less than two Elmo band-aids to his “wounds”), Zach gets down from his seat, and decides to build a fort for his dinosaur family in the living room. I begin washing up the detritus of ham and gluten-free/dairy-free oreos, and as so often happens, my mind begins to wander (so far, it’s always returned). As soapy suds wash away the evidence of a meal consumed, I think about how far Zach has come in his own understanding of autism.
Initially, our inquiries as to what he thought about it were met with complete silence. Now, he talks about it all the time, from discussing Justin’s actions with replaying the same scene over and over on his DVD (“that’s the autism, mom”), to the fact that he said “thank you” to Zachary the other day on his iPad (“Justin DOES talk!”). My boy is truly aware of autism in his smaller world, and within the larger confines of the world around us.
And as I look around, at least within the community in which we live, everybody else seems to be aware as well.
I have to say however that most of what I see around us transcends awareness, has in fact moved past even simple “tolerance”, has even begun to dabble in the waters of true acceptance. I see evidence of this evolution at the movie theater, where a mom with six young girls in tow graciously let me jump ahead of her in the popcorn line, because she could see how anxious Justin was for his carb fix. I witness this acceptance in the children of my neighbors, all of whom always emit a warm greeting for my eldest son, and some of whom continue to ask if he’d like to shoot a basket with them (Justin will eternally decline).
I’ve had a broad view of our little corner of the world’s take on autism as I’ve handed out fliers for my play, with every single store-owner registering only kindness as I’ve described my family, and explained my desire to support POAC Autism Services with my writing. Most importantly, I’ve registered this acceptance of Justin’s differences by his neurotypical peers, during our trips to stores, bowling alleys (he’s quite good now), and of course, his perennial favorite, our local boardwalk. I will admit, sometimes his loud vocalizations and somewhat staggered gait are met with averted eyes. More often than not however, he receives a genuine smile, one which usually is shared with me as well. Sometimes, I even get a heartfelt teen-age comment of “he’s so cute!”.
Which of course, he is.
I feel the world has evolved so much since the dark days of Justin’s diagnosis almost eight years ago, yet of course, we have new roads to forge, more prejudices to destroy. What I continue to see however, the critical point that stirs up so much hope for me, is the constant commitment by those in the autism community to put aside our differences, and instead do our part in raising awareness about our incredible kids. From requests on Facebook to look past our conflicts, to illuminating our homes in blue for the fifth World Autism Awareness Day on April 2nd, to fighting and demanding legislation be put through for the next generation, I see everyone doing their part. And I watch gratefully as our community conducts these actions in far more harmony than I’ve ever witnessed before.
Finally, most importantly perhaps, I see so many people not directly touched by autism trying to lift our lives just a little bit, and do their part by displaying compassion, not condescension.
April is Autism Awareness Month. My husband and I will be turning our porchlight blue, in honor of the commemorated day, the month, and of course, our beautiful and unique children. Acquiring a light bulb sporting a filament that will bathe our home in blue is an easy act, a quick trip to Walmart or Target, a simple twist of a wrist to install. If you’d like to show your support, it’s a wonderful way to let our community know that you care.
And of course, where my kids are concerned, I’ll always gladly accept those smiles too.
As always, thank you for your support!
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April 6, 2011
Posted in My Take on Autism tagged autism, autism awareness, BlueClaws, Christina Aguillera, Elmo, Gary Weitzen, NJ, Parents of Autistic Children, POAC, World Autism Awareness Day at 9:16 am by autismmommytherapist
“Elmo should go back to Sesame Street, Mommy” says my youngest child as he hunches down in his stroller, in part to avoid the wind whipping mercilessly around the stadium on this early April morning, and in part because Elmo is clearly lost, and therefore should leave immediately. Buster, the Lakewood BlueClaws mascot is here as well, but today Zach is not impressed, wants solely to traverse the gusts making it difficult for me and my mother to even gain entrance into the park. It’s World Autism Awareness Day, and not coincidentally the first of four walk-a-thons to be held around the state of New Jersey for POAC Autism Services, and it feels more like early March than spring. I am confident a breeze will not prevent anyone from participating in today’s event however, am excited that thousands of people from around the state will be donating and walking for a cause that perhaps has completely enveloped their lives, and their hearts.
I know it has done so with mine.
As we wheel Zachary through the gates I allow myself a moment of self-congratulation, because we’re here without Justin, and for the first time, perhaps ever, I don’t feel the slightest bit guilty. He would have been upset long before we reached our destination, confused by a trajectory of roads that lead him to an open building with nothing inside that would interest him, although there will be plenty here to captivate Zach. So, I’ve left my oldest with his father to attend this month’s autism movie (Jeff later reported almost nobody was there for this showing, I’m hopeful they all attended the walk). Although Zach has autism as well, the progress he has made has been so stunning I am confident he will one day be able to harness the anxieties and impulsivities that herald his brand of the disorder, in a way in which his older sibling will never be able to do. While I walk for all children on the spectrum, my primary motivation will always be for Justin. I’m sad he won’t be participating with us today, but I know he’s in a happier place.
Hopefully, Jeff is too.
As my little family of three wends its way through the crowds I spend a few moments taking it all in, the people ensconced in boldly colored t-shirts proclaiming their love for someone on the spectrum, the vendors and sponsors with their brochures and enticing crafts for little hands. I can only imagine how much planning it took to create this day, what combined effort and expertise went into an event of such magnitude. Every face I walk by seems cheerful, from those hawking autism “accessories”, to those preventing an unhappy child from a meltdown in the stands. There is a palpable aura of peace here, of parents stripping away the confines of an often harrowing existence, and simply reveling in a day, worldwide, about us.
And with all due respect, I kindly assert we deserve it.
In what seems no time at all Zach conquers three moon bounces, a playground, and a multitude of crafts, and it’s time for the exercise portion of the day to commence. Gary Weitzen, executive director of POAC, descends to the bottom of the stadium to address the crowds, and it seems as if even those children and adults who are vocally stimming quiet a little, are loathe to miss a word. He speaks of his gratitude to everyone who contributed both physically and financially today, to those who continue to underwrite an organization which is the largest provider of free autism trainings in the entire state. Reference was made to an impressive figure raised that almost hit the six figure mark, and may yet do so before the month is through. Gary cheerfully reminds the crowds of all POAC does for families who might otherwise have limited recourse to recreational activities, always for no cost. And after a stunning rendition of Christina Aguillera’s “Beautiful”, we are free to walk, to continue to take steps in the right direction to heal our children, our community, and our hearts.
I pause for a moment before we begin the sole loop my family will participate in today (a four-year-old has his limits with philanthropy), and as the sun slips over an awning that previously provided shade I am required to squint to take it all in, to view the masses moving in quiet solidarity around the circumference of the field. There are spaces of course, but as I remain still, I notice that slowly, steadily, they are being filled, as some teams lag behind, and others proceed at a quicker pace. I know if I stood here long enough I’d behold one great, cohesive circle of commitment, seamless in its synchronicity of volunteers, parents, children, teachers and therapists, all striving mightily to fill the gaps.
And filling the gaps is exactly what POAC has done so beautifully for well over a decade now, and I’m certain will continue to do so for many more to come.
Zach looks up at me impatiently, imploring me to return to the relative warmth of my car and take him home for lunch, and I concede to his desires. I take one last look back from the threshold of the stadium, and am rewarded by a thinning of space, of the blankness between what has been offered to our children, and what should be provided to them. I am so grateful this organization has stepped up to help erase those voids, so appreciative of all those who made it possible to be here today. Once again, we find ourselves a part of a community who cares. And I am reminded anew of what Gary so eloquently communicated to us all at the POAC Gala, mere weeks ago, in his welcoming speech.
We are family, indeed.
POAC walk-a-thons 2011
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