August 23, 2019

Life After Twenty-One

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 6:38 am by autismmommytherapist

Last week I had the opportunity to have breakfast with two lovely women, both of whom have children in Justin’s school. As usual our conversation focused on autism (is there anything else to talk about?), and also as usual we expressed our desires to create some type of home for our kids where they could live together one day. I guess a home is a somewhat modified version- our dream would be akin to something that’s a cross between the Kennedy compound and Disney, with every possible accommodation available to our boys. I realized at that breakfast how lucky I am that I have a handful of parents I’d even consider doing some type of group home situation with, if we have the money, if the rules are relaxed, etc.

Truly, I think the greatest compliment I can bestow upon anyone these days is I’d let you in my group home.

About an hour into the breakfast I looked at my friends and said “I bet nobody in this restaurant is having this conversation” and we all laughed, because it’s true- although autism has taken over our world, relatively speaking it is still a rarity in the general population. I’m sure some of the things we said would shock parents of neurotypical children, but these things are just the realities of our lives, and it’s so good to have people to talk with about the more difficult issues of the disorder.

I am grateful for these women.

I’ve also noticed over the past six months or so a shift within me, one in which I’m feeling comfortable beginning to contemplate Justin’s future after twenty-one. Honestly for years we were so overwhelmed just getting through the day that I couldn’t even begin to think about his adulthood, but I’m feeling more ready now. In the next five years I will be taking on applying for Medicaid and social security, applying for guardianship, and looking for a day program where I’m told my goals should be he’s “happy and safe.”

And I’m ready to start talking with friends and family about what his after twenty-one life may look like, and the impact it will have on our family.

The truth is I’m very nervous about him graduating. I’ve heard there’s often a six month gap from graduation to adult autistics starting a day program, and although we might be able to fill the first few months with camp, that still leaves a long fall/winter potentially ahead of us. Justin likes to be home but also likes to be out in the community, and I know in-home supervision is just not right for my boy. He loves school and does better when engaged for six hours a day, so I am confident he will need a day program for his sanity, and mine. The programs are strict about behaviors, so I am hopeful we will continue on our current track and he will be able to handle a new situation behaviorally.

Fingers continually crossed on that one.

I want so much for him to be able to handle a program, in part because I think it will make him happy, and his happiness is important to me.

But I also want him to be enrolled in a program because I want some modicum of freedom in my old age. If Justin is home I need to be home with him, know where he is in our house, keep an eye on him constantly.

It’s not what I envisioned my impending sixties would entail.

I’m writing about this because I don’t think Jeff and I talk enough about the lifelong impact Justin’s severe autism has had on the family, a choice we’ve made because when we’re actually with our families and friends frankly we just want to have fun with them, and talking about these issues is not very uplifting.

But it’s time for us to start talking. It’s time to explain to the people in our lives that when they’re contemplating where they want to live in retirement we’ll be hoping we’re not babysitting our adult child 24/7. It’s time to talk about the fact that there may not be residential funding for Justin until his father and I are in our seventies, and what that reality entails.

It’s time to talk about the fact that Jeff and I are really tired now, so not so confident we’ll be up for this in twenty years.

The truth is of course we don’t have a choice, and we will do the best we can for our boy, as we’ve always tried to do.

In the meantime I need the people in our lives to know at least to the two of us the future is daunting. I have no doubt we’ll have help along the way, as the autism parent community we’ve tapped into is knowledgeable and so helpful, and I’m confident my many future questions will be answered, and help will be available.

I am remaining positive, hopeful for good choices for our son (I like having choices). He tries so hard to be happy every day, I want to see that reality for him.

So keep your fingers crossed for us too, and know we want to start this conversation now.

 

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July 7, 2019

Watch Your Words

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 6:40 am by autismmommytherapist

It was a walk we’ve taken dozens of times since we moved here thirteen years ago, my sixteen-year-old severely autistic son and I. As usual Justin was a few steps ahead of me as I tried to lengthen my stride to keep up, and I had to smile. This was perfect Jenks boardwalk weather, low humidity, a lovely breeze, abundant sunshine. We were just about to leave the residential area of the boardwalk and pass the aquarium when an elderly woman passed us a few feet to our left, at which point Justin let out one of his vocal stims, just one, and not very loudly at all. A moment passed, and none of the families around us even looked at him. I was contemplating what to make for dinner when I heard it, and whirled around in disbelief.

“Shut up!” screamed the elderly lady in the black beach coverup at the top of her lungs, looking weighted down by her chair and bag, staring straight ahead so I couldn’t get a look at her face, just the back of her head. Rage and disbelief in equal measures engulfed me, and I yelled back “What did you say?!” to which she responded again, but halfheartedly, “Shut up!”.

God, there were so many things I wanted to say to her, but there were little kids all around us, and the teacher/mom in me won the battle of restraint.

Instead of calling her names any good Jersey girl knows I told her to shut up, and screamed that she should be ashamed of herself.

Then I ran to catch up to Justin, absolutely fuming inside that this miserable excuse of a human being could intrude on one of our favorite places, could affect our sanctuary.

There were so many thoughts spinning in my head at that moment. This was only the third time in Justin’s entire life anyone had ever said anything mean to him, as the community we live in is so accepting of autism. I desperately wished another adult was with us so I could rush back to that woman, get in front of her and take her picture and plaster her all over Brick Shorebeat and the Point Pleasant Patch. I contemplated how good it would feel to go all “Cersei Lannister” on her and just intone “Shame, shame, shame” as I followed her back to whatever rock she’d crawled out from under.

I wanted to scream at her that for all his lanky height he is still a child, that she had no right to yell at him.

In the end I could do none of it, just try to keep up with my kid as we headed to our car.

There were so many things I wanted her to know.

I wanted to tell her that this child she was screaming at once wrapped his arms around his teacher after missing a week of school to Hurricane Sandy, and for two hours refused to let her go.

I wanted to tell her this “different” person she’d unleashed her invectives on could read at three.

I wanted to tell her my sweet boy at sixteen still loved to cuddle with me at night for his bedtime story and songs.

I wanted to tell her that before she died I could almost guarantee she’d know someone who’d have a child with autism. I hoped she’d never forget what she did today, and I hoped it would haunt her.

I wanted to tell her she’d picked the wrong mom to mess with, that my “autism tribe” doesn’t put up with this crap.

And as my breathing slowed and my heartrate slowly returned to normal, I wanted to tell her this.

I wanted to tell her that because of this wonderful community in which we reside, that she was negated, that she was nothing.

I would have liked to tell her about the man at Great Adventure this past weekend who asked if he could help us when we were having a rough moment with Justin.

I would have told her about POAC Autism services, how their trainings and events gave our boys someplace to go in the early years when outings were so difficult.

I would have shared with her how amazing the teachers, paras, principals and social workers in the Brick schools and at Search Day Program have been to our boys for the past thirteen years.

I would have told her about how kind our neighbors have been, that there is always a “hello” for our boy whether he responds or not.

I would have shared with her how unknown patrons at iHop had paid for our lunch on Mother’s Day, just to be kind.

I would have told her my son is a thousand times more loving, brave, intelligent, and gentle than she could ever be.

I would have told this coward, who didn’t have the courage to face me and hurl her epithets, that all this collective community kindness cancelled her out.

We finally made it back to our car, and my boy gave me a fleeting grin as he climbed into the backseat, as always asking for water (he is the most hydrated child on the planet). I thought about how far he’s come, and how far I’ve come too. I thought about the fact that ten years ago her invectives would have made me cry, but that now nothing could touch me, or ruin my time with my boy.

I hoped she wasn’t local and would leave us soon. If not, I’m telling autism families to beware.

And as we headed home, my boy rocking out to the eighties with absolute delight, I took a deep breath, and smiled.

 

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June 17, 2019

Thank You to Veterans Memorial Middle School

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:25 am by autismmommytherapist

To Mrs. Stockhoff, Mrs. Caruso, Mrs. Reilly, Ms. Estelle, Ms. Bearse, Ms. Byrne, Ms. Clinton, and Ms. Berry at Veterans Memorial Middle School,

 

I’m writing this post to thank all of you for helping get Zach (and me) through his first year of middle school.

Honestly, I think the transition was harder for me than for him.

In general I’ve found middle school to be something that most students just hope to survive, but Zach actually loved sixth grade and can’t wait for next year.

He did beautifully this year, and this is in large part to your collective excellence and devotion to your craft. You guided him when he needed it; reined him in when he required it; and most importantly, made him feel valued, and that he had a voice.

When there were blips in the road you worked with him to conquer them, with professionalism and compassion. When he excelled, you were there to congratulate him.

You answered my sixty thousand questions promptly and respectfully. For that, I am truly appreciative.

I am so grateful he had all of you to instruct him this year. He came home every day enthusiastic about school, often quoting you when describing his day. He found your classes to be fun, informative, and challenging in a way that kept him engaged, not frustrated. Your instructions and deadlines were clear, your expectations fair. Your assignments were creative, and often thought-provoking. You encouraged him always to do his personal best, and fostered independence in his choices and actions whenever you could.

As a former educator of this age group, I can honestly say I was always impressed.

While all of these things were absolutely wonderful, what I appreciate the most about every teacher who crossed his path this year was how much you “got” my boy, and that you clearly liked him.

That means everything to him, and to me.

I’d just like to say a huge thank you to everyone who instructed him this year. I wish all of you could move up to seventh grade with him (fingers crossed!), but since that seems unlikely, my hope is that he finds the same creative, compassionate and excellent instructors in the years to come.

Thank you for all you do for our kids!

Kim McCafferty

 

 

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June 3, 2019

The Shift

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 12:31 pm by autismmommytherapist

Recently I had the joy of watching my youngest son achieve his black belt in karate, a culmination of six years of hard work and about six months of intense training. The exam took place over two days, and to say finding out if he passed or not on that last day was a cliffhanger was an understatement. I truly wasn’t sure how he’d do until the last second when he was told he earned it. Zach has been fortunate to achieve several great goals lately, but I will confide in all of you that this one truly meant the most to me, and more importantly, to him.

Last week my son who is sixteen put two words together in a “sentence,” and I am equally proud of my eldest boy as well.

When I was pregnant many moons ago, I had dreams for my future kids. I thought it was reasonable they’d be decent human beings, go to college, support themselves, and have love and friends in their lives. Although I wanted them to be successful, the latter goals remained most important to me. I had learned about the perils of ambition from the parents of some of the students I taught, and I constantly reminded myself when I was growing my first child to put an emphasis on his emotional well-being as he aged.

Eventually, my traditional dreams for my eldest had to change. Justin was diagnosed with autism at the tender age of seventeen months, and I think I knew right around his fourth birthday that despite years of early intervention and a wonderful school program that he was destined to remain on the more severe end of the spectrum. To tell the truth I grieved much more then than I did when he received his diagnosis. I had so wanted him to have the opportunity for the trappings of the life his parents had had- college, driving, first love, children, and a career. I can tell you that I’ve never completely let go of that sadness, and probably never will. It is tempered however by the fact that I am certain Justin does not feel like he is missing out on these things. He is truly happy with his DVDs, his computer time, and an occasional outing.

Those dreams will always be mine, not his.

I will tell you that one thing that has helped me all these years, and I am certain it came to me with ease from having been a teacher, was to recognize that his accomplishments, no matter how small they might seem, are as important as the typical childhood accomplishments we equate with success. I made a shift in my thinking over a decade-and-a-half ago, and that shift has been instrumental in how I view my son. We have truly celebrated his achievement over these years- the success with potty training, his ability to read simple sentences, his mastery of typing simple phrases on the computer, his ability to sleep through the night. Last week, it was two words together- “more water.”

And trust me, they were beautiful to hear.

I can honestly say I was as thrilled to hear those clear syllables as I was to see Zach receive his black belt and take his oath. Justin’s accomplishments come from extremely hard work and much practice, and mean as much to him, and to me, as his brother’s. Making that shift many years ago to recognize how important Justin’s achievements were, no matter how simple they seemed, was integral to my relationship with him.

This shift allowed my pride in my boy to bloom.

There will be setbacks with both boys along the way, and to my mind, some failure is good. It’s what you do after you fail at something that is far more important than not reaching your goal. With autism many things come in cycles, and I’m sure that there will be some regression with my eldest at some point along the way.

But I’m betting there will also be goals achieved, milestones attained, struggles surmounted.

And I can’t wait to see how all of it plays out.

 

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May 23, 2019

Sweet Sixteen

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:47 am by autismmommytherapist

This month you turned sweet sixteen.

And truly, how sweet you are.

I admit, when I held you in my arms when you were a baby and envisioned your future, I never imagined this.

I thought at this point you’d be answering me (if you answered me at all) in grunts and monosyllables. I thought we’d begin teaching you how to drive. I believed we’d start those college discussions. Maybe you’d share with me the amazing character traits of the girl you like.

Then again, maybe not.

We are not living any of my dreams.

Instead, we are living yours.

Your dreams include a steady diet of YouTube videos of Baby Einstein and Classical Baby. Your preferred activities center around a plethora of different DVDs from your past. The closest you will come to driving is your participation on the Hertz Rent-a-car site (you have conquered Monmouth County).

Your life is pretty much as it was when you were a toddler, except for the fact that you can type in your own internet searches, a skill for which I am extremely grateful as it brings you so much joy.

My goal has always been for you to feel joy.

I won’t lie to you and tell you I gave up those dreams for you without a fight, or that the fact you’ll never realize them still makes me sad. Some people will support me on this, some will vilify me.

It’s okay, because sometimes at the end of the day my feelings about you were all I had left.

It’s okay, because after sixteen years of raising autism I am pretty inured to what people think.

My solace is you won’t miss the trappings of a neurotypical teenaged life. You won’t pine for the freedom of a car, a particular red-headed girl, or to leave your parents behind.

I’m pretty sure you’d live with me forever if you could. You are always happier at home, with me.

That is a dream I wish I could make come true for you.

I’ve accepted that my heart will always simultaneously ache and soar for you. I am so grateful, grateful beyond words, that we have weathered your latest crisis and for the better part of a year you have returned to you ebullient, loving self.

I missed you. And as difficult as it was for me, I can’t even imagine how difficult your suffering was for you.

I know there will be more challenges up ahead. So for now I am reveling in our “sweet spot,” my sweet sixteen.

I hope the coming year brings you continued joy.

I hope your seventeenth year sees you safe.

I wish you love, laughter, and peace.

I love you.

Happy birthday to my beautiful boy!

 

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May 7, 2019

Paul Prendergast Karate

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:41 am by autismmommytherapist

After months of training, and six years of lessons, this past weekend my son officially became a black belt in karate.

I am insanely, ridiculously proud of him.

Zach is not really a “sports kid,” and a number of the requirements for the seven to eight hour exam were arduous for him. Among other requirements he had to complete numerous situps and pushups, five hundred kicks, and most difficult for him, a two mile run.

I trained with him. I think for a good deal of it he hated my guts, but he agreed it paid off in the end.

There were times over the past six years I wasn’t sure Zach would be able to go the distance. Sometimes his concentration was lacking- at times he didn’t want to practice. Overall however he was able to focus on the goal he wanted, work incredibly hard for it, and never give up.

And even with all that hard work he never would have achieved this if it weren’t for the vision of Master Paul Prendergast and the dedication and patience of the men and women at Paul Prendergast Karate.

During Zach’s initial years at karate he was not the easiest pupil some days. When he was really little he lacked focus and was impulsive, neither of which are really conducive to advancing in ranks. With time and maturity he came into his own, but I am confident he never would have gotten to this place without his instructors.

Their compassion and commitment to Zach lasted the entire six years he’s been at the school. They knew instinctively when to push him, and when to hang back and let him figure things out for himself. He was always encouraged to be his best, and to work at his own pace during classes. The curriculum does not just pertain to karate moves however – it also has a focus on self-betterment, including school achievement, behavior, and character development, all of which helped Zach become a more well-rounded person.

Zach was always told he could achieve what he wanted as long as he dedicated himself fully to it. And I am happy to say after these past two weekends, the staff at PPK were right.

I have felt for years that there are two activities in Zach’s life which will help him be confident in adulthood. One is scouting, which among other things has taught him most importantly to self- advocate. The other is karate, where he has not only learned to defend himself, but has learned how much he can stretch himself to achieve goals that at times seemed out of his grasp. I truly feel his time at karate has helped prepare him for college, enhanced his academics, and increased his self-confidence many times over.

I can’t recommend this program enough for any kid who is different, who desires self-confidence, or needs to develop self-discipline.

And I can’t recommend enough the staff at PPK for helping my son achieve all of these things.

Thank you Paul Prendergast Karate!

 

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April 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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