April 2, 2019

World Autism Awareness Day: A Call for Compassion

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , 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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March 18, 2019

Keep an Open Mind

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 9:34 am by autismmommytherapist

Fifteen years ago this fall an event occurred which forever altered the course of my life, and my son’s. I had taken my sixteen-month-old to see his pediatrician for a scrip for his recurring case of reflux. Instead I left with several badly mismatched copies of articles with the word “autism” in the title, and not a word of encouragement as I packed up our things and left the office.

Although the way I was told about my son’s disability was brutal, I will always be grateful his doctor saw more than just speech delay in my small son.

I have two boys on the autism spectrum, an almost sixteen-year-old with severe autism, and a twelve-year-old on the milder end of the spectrum. With both boys I was fortunate to receive diagnoses of ASD before they turned two, which back in the early “thousands” wasn’t always so easy to come by. I am positive that early diagnosis and intervention contributed greatly to both of my boys’ later successes in life. Despite severe autism, OCD, and tics my teenager is a mostly happy soul, does well in his school program, well at home, and we are able to take him out into the community with little drama. My tween is on honor roll, has friends, and participates in many activities both in school and out.

I believe there are several factors that have led to their collective happiness and successes. Early diagnosis and intervention were key. Never giving up on their leading happy productive lives, and taking the steps every day to ensure this would happen (even when most times my husband and I were exhausted), was crucial. Their intrinsic desires to enjoy life and the people who support them also played a large role in their content demeanors.

Perhaps the key ingredient however that has brought us to this point is that their father and I got some great advice when our youngest was first diagnosed. We were told there would be many suggestions on how to treat his autism, from diets to an early intervention mode of therapy. We were advised to read up on everything autism-related as much as possible, but as we navigated our way through this autism path to remember one very important thing.

Try many things, but always keep an open mind.

When we moved to New Jersey from Virginia when Justin was two he had a few sounds, but no words. I had been trying to teach him sign language for the better part of a year at that point, and although he had a few signs, he was far from consistent in using them. I had read that some studies suggested autistic children had a far better chance of speaking if they used sign rather than other methods of communication, and I was determined this would be his technique. I thought he just needed more time to master sign language, and was doing hundreds of trials a day to ensure he would.

And then one day at an early intervention meeting at my home about a month after his therapies started one of our fabulous therapists pointed out how little progress he’d made in a year, how he often used the same sign for everything, and how his gross and fine motor issues were more than likely the biggest culprits in his slow learning curve.

It was like a lightbulb went off in my head.

Everyone around the table agreed, and these were therapists with many years of experience at the Douglass Center. It struck me that I had been clinging far more tightly to those few studies than the evidence staring me in the face- my son needed a new method of communication that didn’t require so much manipulation of his hands. Within weeks my son was using PECS, and to this day he communicates his needs beautifully on his iPad with Proloquo to go.

If I hadn’t been open to their advice when he was so young, I’m not sure he’d be at this point today.

I went through a similar experience with my youngest son, who regressed at eighteen months, losing a year’s worth of skills over the space of several weeks. I was ready to dive right into an ABA program with him, but his team of early intervention therapists persuaded me he needed more of a NET or Floortime approach, and they were completely right. He thrived with this therapy, with its more fluid approach and less data taken.

Fortunately by that point, I was less driven by studies and more intent on really looking at my children and ascertaining their individual needs.

Piloting through the world of autism can be frustrating and overwhelming. There have been so many choices my husband and I have had to make regarding our sons’ care, and often we didn’t know if we were making the right one. Keeping an open mind to different approaches to deal with our boys’ issues has served us well this last decade-and-a-half, and it’s an approach we cling to, as every year brings new challenges to one or both our boys. It is really important to be gentle with yourselves if you select the wrong path initially- there’s no autism manual, each child is different, and it’s important to choose whatever approach not only works for your child, but for your entire family.

Whatever you do, remember to keep an open mind.

 

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February 21, 2019

The Home Stretch

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 12:38 pm by autismmommytherapist

My severely autistic teenager is rocking out to Baby Einstein on his DVD player as I make the phone call that I’m hoping will make big changes to his life, and to his family’s. I’m put on hold for the briefest of moments to find out that my son has been accepted to summer camp, which is great, but not the whole story. The exciting part is that there’s the possibility he can sleep there too, which is both wonderful and scary simultaneously for his always-worrying mother.

As he continues to eat his pretzel, he has no idea something potentially momentous has occurred.

You may be thinking that sleepaway camp does not sound like such a big deal, but for this kid and his family, it is. Justin started having trouble at my mother’s, the only relative who can take him overnight, about ten years ago. Since then he’s only been out of his bed on our every other year trips to Disney, a total of twelve nights. Generally Jeff and I are able to get away for a few days once a year, but some years not. If this works out, it means I could have time with my husband. If this works out, it means we could take his brother away somewhere where Justin would have no interest in going. If this works out, Justin will have some much-needed practice sleeping in a bed other than his own. Because someday, for at least forty years, he’ll be leaving his childhood bedroom to sleep in a place that will one day become his new home, without his parents.

And somehow I need to get him prepared for that eventuality.

He’s only fifteen, and in theory we are many, many years away from this happening, but the truth is none of us knows what the future holds. There isn’t a day that goes by where I don’t try to figure out what would be kindest for Justin. Is it keeping him with us until we can’t take care of him anymore? Is it trying to give him a semblance of independent living as early as possible in his adulthood so he gets used to it when he’s younger? Is it splitting the difference?

Will I even have a choice?

That last one is the biggest question of all.

The truth is I’ve always been a “What if” girl, tried to look at many possible outcomes for different situations and be prepared for all (this made me a good Girl Scout and was an invaluable tool as an educator). It’s hitting me that he’ll be sixteen in mere months, a time when most boys his age are starting to think about colleges and driving and dating (that’s probably been happening for years) I am actually thinking about how best to get him acclimated to his adult life, which will bring about big changes.

The problem with that is, Justin is not so big on change.

We all face huge life changes, and my son will be no exception. Learning to live somewhere else will be the biggest one he faces other than leaving his beloved school, which I immaturely refuse to think about because it’s his second home (I will be a blubbering mess at his graduation, wait and see). The whole “sleep somewhere else thing” has been on my back burner for years because the thought of it is anxiety producing. Will the staff carry out his bedtime routine as much as they humanly can? Will he actually sleep or keep the other kids up? Will one of the other kids keep him awake? Will he enjoy it at all?

Will he understand I’m coming back for him?

I think, however, it’s time we give big changes a try. For all I know, he won’t even make it through day camp this summer and sleepovers will be off the table, but it’s time to give it an attempt.

It’s time for me to recognize that my kid who still likes Eric Carle books and Barney (God help us) is growing up.

It’s time for me to loosen those reins a little, if he’ll allow it.

It’s time for me to let go a little bit while he can still come back to me.

 

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February 5, 2019

My Golden Years

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:44 am by autismmommytherapist

I have a confession to make to all of you, although for those of you who know me, this won’t come as much of a surprise.

I, Kimberlee McCafferty, am a planner.

Perhaps I’ve given myself away over the years, as when I mentioned at Justin’s IEP meeting when he was seven that I really wanted a plan that would keep him happy for his eighty years on earth, or how I’ve been talking incessantly about his post-graduation life which is still five-and-a-half years away.

We all have our strengths.

In fairness to me, much of this strategic planning initiative stemmed from my son’s recent eligibility meeting, where an administrator from his school confirmed for me what I had dreaded hearing this past fall- that my dream of putting him in his school’s post-21 program, for various reasons not relating to him, may not come to fruition.

That dream was right up there with an entire childless weekend binge-watching “Sex and the City” with martini in hand and never getting out of bed.

To be honest with you, it takes a lot to break my heart these days, but this one really gets to me. You see, Justin loves his school, has been a student there since he was seven. They are amazing to him, love him and get him. Since there’s no age limit that I know of in the post-21 program I had hoped he’d remain on campus for decades to come, not just because that would give me some continued semblance of freedom (although that heavily factors in) but because even without him telling me I know it would be his first choice of how to spend his adult life.

And for anyone who wants to argue with me asking how could I possibly know that? I will respond with, I’m his mom.

I just know.

And believe me, I know, graduation is still over five years away, and as I look back at the last five years I am reminded that anything can happen.

And it usually does.

To tell you the truth however, I’m glad I know this now, and not four years from now when I’ll start looking at day programs for my boy who likes to be out of the house and kept busy. It’s actually forced me to reflect not only on Justin’s life and his projected adulthood- it’s forced me to stop being so complacent over my current life, and having time to do things.

While none of us knows how much time we have I also know this. That most of my friends with adult autistic children had a six month gap from the time they graduated until the time their services kicked in. I know that a post-21 program is not an entitlement- if he can’t handle it for any reason, he’s out. I also know that if we try in-home respite I will spend the better part of my life continually searching for decent, caring hard-working people to fill the respite role. In other words, who knows what I’ll be able to do when his school entitlement ends.

Truly people, I’m living my retirement now.

So I’m putting this out there for those of my brethren who are five or six years out from watching their child graduate. I’ve still got a few years before I have to encounter the labyrinth of guardianship, SSI, and Medicaid. Right now Justin is fully successful in his school program, and short of snow or illness I can count on him attending there his wonderful 210 days a year. My Mom is still young and game to help babysit wheever possible, and there are a lot of things I’d still like to do when I can.

And it’s up to me to get my butt in gear and start doing them.

Some of you with teenagers on the more severe end of the spectrum might be reading this and thinking that “fun” is not exactly your first priority now, as you may be dealing with all sorts of challenges with your child. Believe me, I get it. I’ve been there too.

But while you’re dealing with all these challenges remember this autism journey is a marathon, not a sprint. You have to take care of you so you can take care of them.

So make those dinner plans and stick to them. Have a certain location on your bucket list? Visit it now.

Have the fun that you can while you still have the relative freedom to do it.

And as I plan out my “2019 fun” for the year, I’m taking my own advice and running with it.

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January 29, 2019

National Council on Severe Autism

Posted in Life's Little Moments, My Take on Autism, AMT's Faves tagged , , , , , at 11:48 am by autismmommytherapist

A couple of weeks ago while procrastinating from what I should have been doing and scrolling through Facebook I saw a post that immediately caught my interest. It was from the National Council on Severe Autism (NCSA) which I had never heard of, and the title read “Suffering in Silence: The Dark Side of Autism.”

I actually put down my chocolate for better scrolling access, and I never put down my chocolate for anything.

I read the article by a mom out in California who spoke about an incident she had lived through with her eleven-year-old severely autistic son, one which culminated in the California Highway patrol pulling up behind her as she parked her car on the highway and hoped to quell the rage her son was displaying toward her so she could safely leave. Both her love and her fear for and of her son came through in every sentence, as well as her heartache in knowing that an attempt to take him ice skating could end this way.

These are the stories we do not see portrayed on tv on “The Good Doctor,” or in “Parenthood.” Yet, they exist. And they are tearing families apart.

People need to be made aware that even when autistic children receive the best of therapies, are in excellent school programs, and live with loving families, incidences of violence can occur.

And they, and their aftermath, can be devastating.

I have a fifteen-year-old severely autistic son with accompanying OCD, tics, and intellectual disability. There is no doubt in my mind (or even my husband’s) that of the few people in his inner circle that he loves, he is most attached to me. This is a child who at least once a day kisses me even when he doesn’t want anything and hugs me on a frequent basis. His level of outward affection has slowed somewhat since he became a teen, which I figure is appropriate for his age, but still we have a connection that through insomnia, aggression, refusing to eat, soul-sucking OCD, and this last year a terrible movement disorder that has since greatly resolved and has been diagnosed as tics, has remained true and strong.

And yet, despite this profound connection, we have survived our own aggressive incidences, some of which I have written about on my blog. Many I haven’t. It’s not because I’m embarrassed. It’s because I want the world to see him as I do- a loving, kind-hearted, intrinsically happy almost-man, despite his challenges.

I have no doubt that if I wrote more about the times I feared for his safety and for mine, people’s opinion of him would change. More than sharing with the world, I don’t ever want that to happen. I love this kid more than life. I want him to have as many options open to him as the world will provide. Thankfully we have moved beyond the period where it seemed like he was in constant meltdown, but I know many families are not so fortunate despite trying desperately to help their child.

Their stories need to be told too.

I’ve since been following the NCSA on Facebook. I saw within a week the backlash had started which I knew would happen, despite their mission statement proclaiming their desire in “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders,” which seems to me simply like a beneficial, and incredibly necessary thing to do.

My eldest son is not like the protagonist on “The Good Doctor.” He’s not like my other son with high-functioning autism. And yet the truth is, with two sons on opposite sides of the spectrum, I am thrilled when either side is represented. Seeing an individual with autism portrayed as brilliant on a top-rated show can only be beneficial to my youngest son, even if his autism doesn’t manifest in any way like the genius of Shaun Murphy.

But we need to share our stories of darkness too, in the hopes that awareness will result in better services for those on the severe side of the spectrum, those who cannot speak for themselves, those who require lifetime, 24/7 care. We need an organization like the National Council on Severe Autism to call attention to an underserved segment of the autism population, the one that nobody writes the “feel-good” stories about. The one that makes some of us uncomfortable.

The one perhaps impossible to capture on a television show.

I for one am thrilled with the creation of the NCSA, and wish them well. I am actively for any organization which can help my kids, and hopefully with time we will see the National Council on Severe Autism as major contributors in the goal of realizing safe, happy and productive lives for those severely affected.

We can only hope.

 

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January 23, 2019

Be Prepared

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 11:29 am by autismmommytherapist

I am the mother to two wonderful autistic boys, whom I love to write about frequently. I will let all of you know that it has come to my youngest son’s attention that I have been writing much more about his severely autistic brother lately than him, and he is not amused.

So in an effort to rectify this situation, here goes.

My youngest, Zachary, is almost twelve (!) years old, and is considered to be on the mild end of the spectrum. It wasn’t always an easy road for Zach, but over the years with therapies and maturity and lots of patience, he has grown into the stellar young man he is today.

I admit, for me there was some wine and chocolate along the way, but we got to a good place eventually.

Zach would be considered a success story by any standards. He does beautifully in school, has friends, participates in activities he loves, and most importantly, adores his life. His father and I are grateful every day that his hard work paid off and that he’ll have so many choices for his future. His is a kind-hearted soul, one I feel fortunate to raise.

This doesn’t mean that everything is always perfect- it never is with any child, but I think perfect is overrated anyhow. I will tell you that while many different things went into making my child love his life, including good therapists and excellent teachers, I will share with you that there are several activities that have had a profound impact on him, and one of them is boy scouts.

Zach started cub scouts in first grade, and by third grade I was one of his den leaders. Zach was very impulsive in his younger years, and it wasn’t always easy to manage him at den and pack meetings. Our den had an eclectic group of boys, and I can recall often being bathed in sweat by the end of a den meeting.

Den days were often wine and chocolate days.

We persevered, carefully chose his new boy scout troop, and I held my breath. We started attending meetings in March, he crossed over from cub scouts to boy scouts in June, and really started participating in the troop in September.

I will say both for Zach, and for myself, it’s been a wonderful and eye-opening four months.

Boy scouts is intrinsically different than cub scouts, as it is “boy-led”, with the scouts making most of the decisions as to what activities they do and all of the accompanying details. The boys are supposed to initiate almost every conversation- be it toward advancement in ranks, questions regarding a camping trip, or the acquisition of those valuable blue cards for merit badges.

Initiating conversations, unless they’re about Star Wars or Roblox or Minecraft are not Zach’s forte. Getting the hang of advocating for what he needs has been difficult for him, and it’s a process that requires coaching, sticky notes, and multiple tries. Cold calling adults to be his merit badge counselors is not easy either, but with a script to work on he’s getting it down.

It sounds like a simple skill this self-advocating, but I truly believe it will be one of the most important that he acquires in childhood, and scouts will be the forum wherein he learns to do this.

His father and I fully anticipate that he will attend college, hold a job, have a wife and the four (!) kids he says he wants, but despite being on the more mild end of the spectrum Zach will have some challenges along the way. I can’t stress enough the importance of independence with any child (my teaching background is kicking in here), but with kids on the spectrum, it’s imperative. It’s not just kids on the mild end either. We constantly strive with his brother Justin to further his independence in basic skills and toileting, and I constantly remind myself not to do for him what he can do for himself. And for Zach, having the skill to ask for what he needs will be imperative in gaining him that coveted independence.

I’ve already seen growth in Zach in this arena since he started boy scouts, and it has transferred over to home as well. I am hearing a lot more “I need this” and “I’ll do it myself” which is heaven to my ears (especially where chores are concerned, it’s never too early to prepare for a good marriage). I’m sure part of this newfound independence just goes with entering the last third of childhood, but I am certain scouts has influenced this new desire, and I am grateful he will have many more opportunities to self-advocate through this organization.

It’s never too early to “be prepared.”

 

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January 14, 2019

Taking a Chance

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:50 am by autismmommytherapist

“He sounds like such a man,” my friend said after hearing some deep guttural stims over the phone as we caught up on each other’s lives and vented about our extra holiday pounds. “I know, he has the beginnings of a mustache” I replied, thinking happily that at least this would be my husband’s domain.

I have my limits when it comes to child care.

The truth is, I’ve been in a little bit of denial over my eldest son’s (who has severe autism, OCD and tics) impending manhood, in part because he is now bigger than I am, which can be problematic for a host of reasons.

The other reason is that each step closer to adulthood is one step closer to my not being here for him, and that’s just not a place I like to visit often.

Trust me, it’s not a pretty place.

Despite my reluctance to contemplate this the reality is that in five short years my son will be twenty-one, and will age out of his school entitlement.

I’m not sure who will be the most unhappy about this. I believe it will be a tie.

I’ve heard the post twenty-one autism world described as a “cliff,” but to tell you the truth I’ve seen my friends with older kids on the spectrum make it work for them, so to me, there’s still hope.

Of course the next five to seven years is when the “autism bubble” bursts, so not as sure we’ll be as successful.

The truth is I’ve got to start thinking about what the landscape of Justin’s life will look like, whether I want to or not. I’m hoping it includes a day program. It would be lovely if he worked a few hours a week or volunteered somewhere too. And one day, eventually, he will reside somewhere other than his mom, dad and his sibling.

His brother has made it clear he’s not taking him on full-time. And while I get that he’s eleven and that taking care of his severely autistic brother doesn’t sound as fun as time on Xbox, I’m pretty sure his opinion won’t change with maturity.

Call it a mother’s instinct.

Someday, Justin will live in some type of group home placement, will have to relinquish his routine and the ocean mural on the bedroom wall of the only house he’ll ever remember, and make his way in a group living situation.

I have read and spoken to so many parents who are keeping their kids until the very last second.

I have read and spoken to so many parents who want their kids in a residential placement as soon as possible both for their ability to be as independent as possible, and for their own freedom as well.

I don’t believe the first group are martyrs.

I don’t believe the second group are callous parents.

I think in some cases it’s easy to see what’s best for both the adult child, and the parents.

I think in some cases it’s near impossible.

Impossible for us because I know in my heart he wouldn’t want to change a thing over his eighty-something years, and that is just not an option.

Despite the fact that I’ve been told my choices (short of winning the big lottery) are ridiculously limited, I know I have to start thinking about these issues and how best I can prepare Justin for such a tremendous move.

Given that he’s only spent about a dozen nights out of his own bed in the last ten years (yay Disney!) I’m pretty sure I need to step up my game and address this first.

Since one of the biggest challenges for Justin living away from us will be sleeping in a new environment, I know I’ve got to create other opportunities for him. A lovely fellow autism mommy mentioned a local camp that does both day camp and sleepovers, and trusts them implicitly.

I can tell you when we spoke about it my heart both lurched and soared simultaneously. Would he sleep at all? Would he find it even the tiniest bit fun? Would I get to go out?

Would he understand that I’d come back for him?

To say that I’m not sure how this will go would be a massive understatement, but I’ve decided I’ve got to give it a try, and for as long as the camp is willing, keep trying. I’ve got to expand his horizons. He has to try new experiences that will set him up for success in adulthood.

He’s got to see that as long as I’m able, I’ll always see him again.

Summer camp is just a few short months away, but it will be here before we know it. Wish us luck. And if you’re like me, in a situation where you’re child’s adulthood is on the horizon and you want to start preparing him or her, now’s the time to push the envelope. Take some risks. See how far you can stretch them.

Who knows. Maybe we’ll all be happily surprised.

My fingers are crossed.

 

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January 7, 2019

A Helping Hand

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:39 am by autismmommytherapist

“Can I help you?” she said quietly, standing respectfully behind me as I tried to maneuver Justin off the ride at Great Adventure. I turned to make sure she was talking to me, saw her smile, and knew she was there to help. I was confident in another second or two I’d have him out (he’s big now, I wouldn’t want anyone to hurt themselves), so I responded “Thank you, but I’ve got this.” She wished us a good night, and moved toward the exit.

It was freezing there that day, but her offer warmed my heart.

In the last two years particularly I’ve had some issues with Justin when we’ve been out and about in the community, and as he’s gotten older and bigger it’s at times been more and more difficult to contain him when I’m alone with him. The last year until this past fall was especially grueling- we struggled at Jenks, at Great Adventure, at the movies, etc. You might wonder why I still kept taking him out. The truth is there were still many instances where he behaved beautifully, coupled with the fact that I’ll be damned if his world becomes smaller than it already is.

I have my limits.

The times he’s fought me have always been for a reason. Perhaps it was that he wanted to go on a ride he’s been too tall to ride for five years. It might have been for a trip to a water fountain I couldn’t see and thought he was just trying to leave. Perhaps he did just want to leave the venue just minutes after we’d arrived.

Sometimes I know the “why,” and sometimes I’d pay big money for those answers.

But truthfully in the moment I just want him to stop, and sometimes our “wrestling” can be intense. I’ve had a few instances where I’ve been soaked in sweat from the encounter, and I can’t blame it on perimenopause.

We all have to find the humor somewhere.

Those episodes with him are physically and emotionally wrenching. I can honestly say in all the years we’ve had this struggle I’ve only had two offers of help with my son.

Yes, two, and one was a Jenks “cop,” so I’m not sure that really counts.

Justin is bigger than me now. I’m sure an autistic teenager in the throes of a meltdown is a scary sight for some. I completely understand why moms and dads with small children steered clear of us. I get it, I wouldn’t put my kid at risk either.

The truth is I’ve watched some strapping young men glance our way and then give us wide berth. Honestly, I think this community can do better.

It can’t be from lack of awareness, for everywhere you turn in Jersey there’s an autistic kid, so I’m confident people knew what my son had. To be honest most of the time I can figure out a solution to his angst and work him through it.

But there may come a day where I can’t, and I would love it if someone simply offered to help.

I’m not asking anyone to get physical with my kid. Perhaps you could just hold my purse, or his pretzel, or make a phone call home for me if things really get bad.

Just knowing someone else gave a damn would have helped.

I am far from the only person in this area who has gone through this. I’ve seen other families struggle, and once on the boardwalk I was able to comfort the young sibling of an autistic boy in a gigantic meltdown while his mom worked to calm him down. I felt lucky to be there that day. She told me I helped her.

It took five minutes of my life, and made that family have a better day.

So I’m writing this to our community, a community I have often written about as particularly caring and compassionate where my son is concerned. If you see a mom or dad struggling and you are able, please offer to help. Nine times out of ten they’ll probably refuse, but maybe that one time you can really do something to ease that family’s strife. And while there may be nothing you can physically do for them in that moment, trust me, just by asking them you’ve already helped.

From my community to the greater community at large, I thank you.

 

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January 3, 2019

Resolution Evolution

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 12:19 pm by autismmommytherapist

It’s only January 3rd, and I’m already wavering on my “reduce chocolate” resolution.

Maybe some things are for the best.

Generally I am a person who takes New Year’s Resolutions seriously. The holiday reminds me of my teaching days, when the end of August usually found me setting up my classroom, excited about a clean slate with my incoming students. Most of the time that enthusiasm, that drive to make this an even better year than the one before, lasted until June.

There were a few years however when my charges brought me to my knees by October.

I usually find my January resolutions last for at least a few months, sometimes longer. This is the first year in many, many years losing weight is not one of them (stress is a bitch but great for my BMI). I still have my resolutions for 2018 written on a scrap of paper on my desk, mostly for the boys. I had half a dozen for each, and got to three and two respectively for each kid.

Not a bad haul after all.

But this year I decided to change things up a bit. Most years I am very specific in my “improvement desires,” but this year I went old school.

My resolution for 2019 for this family, and for me, is just to be happy.

I know, it probably sounds like I’m slacking a bit (and maybe I am, but frankly the last two years have been hell, and I’m finding I don’t rebound as easily between disasters as I used to in my youth). So this year, I’m keeping it simple- bliss, in whatever form that takes for every member of my clan, is the goal.

And although I’m writing this for my brothers and sisters who have been in the autism game as long as I have, or much longer, I’m also writing this for my brethren who are just starting out, or any of you in crisis with your child.

Those of you who have just received a diagnosis for your child, or are realizing they will probably reside on the more severe end of the spectrum, or are just thinking about reaching out to Early Intervention to have your son evaluated, this is for you. If your kid is taller than you now and aggressive or self-injurious and you often contemplate how to get through the hour, not the day, this is for you.

No matter what is going on with your child, you have to take care of yourself, and find some “happy.”

For years, I didn’t do this. I threw myself headlong into being my eldest son’s ABA therapist when he was eighteen months old because Early Intervention barely exists in Virginia, and I kept up a grueling pace for two years before we moved back to NJ, no fun in sight. When my son has moved through what I call his “relentless cycles” of insomnia, aggression, extreme OCD, etc. I focused entirely on him, never thinking of my needs. Doctors visits got postponed; exercise was a thing of the past.

Fun, of any kind, was not on my radar.

I have people new to the autism journey ask me often if I could go back and change things, what would I alter. Aside from firing a few therapists a lot sooner than I did, I can honestly say the one big thing I would change is the fact I didn’t take care of myself, and allowed myself very few opportunities for respite.

That choice has affected my health, some friendships, and my overall outlook on life, which has generally been disgustingly positive.

I have vowed never to let that happen again.

So please, whatever is going on with your child at this moment, do whatever it takes to create some “happy” for yourself. Go beyond that daily run or that gynecologist exam- figure out what brings you joy, and move mountains to allow yourself those hours just for you. If a neighbor, friend, or relative has offered to babysit, take them up on it (even if it’s a disaster you’ll get out once!). Remember, your family and partner need a whole, happy, and healthy person in their lives- do whatever it takes to get there, and leave those other resolutions in the dust. They’ll be there waiting for you down the road, but you are the priority- you come first.

Do whatever it takes to find your happy.

 

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December 14, 2018

The Future

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:51 am by autismmommytherapist

If you are just beginning your autism journey with your son or daughter, I imagine you are feeling at least a bit (understatement of the year) overwhelmed.

Perhaps you’ve been able to secure that elusive appointment to get your child a proper diagnosis. Maybe you have passed through that gauntlet and are already lining up meetings with Early Intervention for both you and your kid. Perhaps you’re at a later stage and are in the midst of evaluations with your child’s school district to get him or her enrolled in what you hope will be an appropriate (and excellent) program.

I imagine that wherever you are in this process, whether during it or after it, you are very, very tired.

I am fifteen years into our autism journey with two children on the spectrum, but I can remember those days like they were yesterday. It seemed for years we were living from one doctor’s visit to the next, one evaluation/meeting to the next. It was a relentless round of hurry up and wait, until finally we moved and got our son, Justin, into his local school district.

And yes, I too was very, very tired.

We were fortunate in that most of Justin’s therapists and teachers were wonderful, however most people do not deal with dozens of practitioners without having at least one bad apple in the bunch.

For us, it was an Early Intervention provider who informed me with absolute certainty that my twenty-month-old would never speak or live independently. In truth, she turned out to be right.

But that’s not the point.

I will tell you this. At the tender age of eighteen months my eldest son was diagnosed with moderate to severe autism. He had no words, had frequent meltdowns, relentless insomnia, gastrointestinal issues, sensory issues, and was the pickiest eater on the planet. This was 2004, and a diagnosis at this age was generally unheard of, but we were fortunate that a developmental pediatrician was able to recognize his issues for what they were so we were able to start various therapies with him. He was not even two when he started with ABA and speech therapy, barely walking when this particular therapist graced our doorstep.

She had no right to say what she said. There is absolutely no way anyone can predict the trajectory of your child’s future when they’re this young. And while my gut instincts told me Justin might remain at the more severe end of the spectrum, the elusive possibility of him having some semblance of functional speech and some measure of independence kept me going in those dark days when I was my son’s primary therapist. With that one sentence his therapist robbed me of hope and plunged me into days of despair before I was able to realize that she wasn’t omniscient, and was far from having all the answers.

She never should have said what she did. And I wish I’d had the energy to tell her that to her face.

Fourteen years after that chilling moment my son does have a few words, but more importantly he can communicate beautifully with his iPad. He will never live independently, but is wonderful at getting his needs met by himself, excellent at the execution of completing a task. He eats (even a few veggies!), sleeps, and no longer has many sensory issues.

Most importantly, he’s one of the happiest children I know.

Ten years ago our second child was diagnosed with regressive autism, and at first his trajectory seemed to mirror his brother’s. Zach was eighteen months when he experienced two back-to-back illnesses which seemed to rob him of speech, appetite, and extinguish the light in his eyes that made him our boy. I remember thinking at the time that one of his therapists could have said the same thing about him that they did about our older boy, but fortunately all held their tongues.

And ten years later he no longer has special education status, has friends, made the distinguished honor roll in his first marking period of middle school, and most importantly, loves his life.

To this day, both of my sons still surprise me with their skill acquisition, their ability to adapt to different environments, and their ebullient souls. Fifteen years ago I could never had predicted I’d be at this point with my two boys, and my hopes for their happy, safe and productive futures were what kept me going during our darkest days. Nobody can predict your child’s future when they’re very young, not even the most brilliant doctor or the most experienced therapist. Don’t ever let anyone rob you of hope that your child will one day be happy too.

And never, ever give up in that pursuit.

 

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