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 29, 2019

Paying it Forward

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:40 am by autismmommytherapist

Recently I celebrated the trifecta of weekends- my anniversary, Mother’s Day, and my eldest son’s sixteenth birthday, all within twenty-four hours.

I am really quite tired.

I have a teenager with severe autism, OCD, and tic disorder, and over the years I’ve never really known how things would go on any given holiday. There have been years when we’ve considered it a victory if we just made it through whatever meal we were supposed to be enjoying. There were years we wouldn’t even make it to the meal without weathering some sort of crisis.

I will admit there have been a few Christmases so soul-suckingly hard I’ve ended the day in tears, and I am no longer a big “crier” anymore.

I have to say however that this past Sunday, both Mother’s Day and my son’s birthday, were as close to perfection as one can get in an autism family. Some of it was due to my son’s behavior.

And some of it was due to the kindness of a stranger whose name I will never know.

That Sunday was a rainy mess, but I know my boy loves to get out of the house, so when I got back from church I decided to try to brave our town’s iHop and give lunch a go. We got there and were told it would be a twenty minute wait, but we were lucky to find a spot to sit, and Justin seemed to understand we had to wait for a table. After he rejected my attempts to entertain him with my phone we sat in companionable silence, his vocal stims punctuating the semi-chaos around us, with nobody seeming to mind.

One of the many reasons I love this town.

Within half an hour we were seated, and then the true test for Justin began as we waited forty minutes for our food. After twenty he kept pushing my hand to touch the one menu left on the table (Mommy is magic and will get me fed!), but I was able to keep him calm, and eventually the food came.

He ate all of his and half of mine, but the kid deserved it.

I was already feeling this day was a victory as Justin had waited in two separate places for over an hour for his food and not had a meltdown, but we weren’t done yet.

That’s when I found out some kind souls had picked up our check for us. When I wanted to thank them, our server told us they were already gone.

I’ve heard of things like this happening in our town before. My mom had this gracious effort extended to her once at Friday’s when she was with Justin, and again, she was unable to thank her patron as she had left. I will tell you it brought tears to my eyes, and I wondered what they were thinking. Did they believe I was a single mom trying to share a successful meal with my boy on Mother’s Day?

Did they have a relative with autism?

Were they just awesome people?

I know at least the latter was true.

I will tell you that this act of kindness meant a great deal to me, in large part due to the fact that someone had truly seen me and my boy. Over the years as I’ve continued to bring Justin out into the community I can tell you honestly I have had very few uncomfortable experiences with strangers. Justin has had meltdowns when we’ve been out, but more often than not if I’ve had any interaction with anyone it’s been where they’ve been offering me assistance, not commentary on my parenting.

I’ve been lucky, I know.

But the truth is I often feel invisible when we’re out together. Justin has vocal stims and physical tics, and it’s obvious within seconds of looking at my boy that he’s not from the neurotypical tribe. I would say that most of the time when I’m out with him if I make eye contact with anyone their eyes quickly slide away. On a few occasions I get a smile, but more often than not it’s like we’re just not there.

Trust me, it hasn’t devastated me, I’ve had far more important things to worry about. But just once in a while, it’s nice to have that moment of recognition with a stranger. It’s just nice to be seen.

And that Sunday, we were seen.

And it felt great.

On the slight chance that whoever did this for us is reading this blog, I thank you from the bottom of my heart. You made my Mother’s Day, and made Justin’s day even more special.

I can’t thank you enough.

And I can’t wait to pay it forward myself.

 

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May 23, 2019

Sweet Sixteen

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 16, 2019

Early Intervention

Posted in Life's Little Moments, My Take on Autism tagged , , , at 3:14 pm by autismmommytherapist

Maybe it was the “Light it Up Blue” campaign shared by a friend that came across your Facebook feed.

Maybe it was the teenaged boy on the swings at your local playground who vocalized so loudly as he seemed to climb perilously close to the sky.

Maybe it was the girl in the movie theater who rocked back and forth one row behind you in the movie theater last weekend.

Maybe it was your growing suspicion that your child is on the autism spectrum too that is making you think about seeking help.

As a veteran mom with two boys on the spectrum all I can say is listen to your instincts, and make those calls.

My eldest son was diagnosed at seventeen months, which was considered to be very early back in 2004. Quite honestly he could have been diagnosed earlier if our pediatrician didn’t take a “wait-and-see” approach, claiming he was following in his father’s footsteps with his lateness to talk. Still, seventeen months was a gift, and unbelievably we were able to get an appointment with a developmental pediatrician four weeks after a devastating pediatrician’s appointment where my son’s doctor thrust a bunch of mismatched articles with “autism” in the title, basically shoved us out the door, and wished us luck.

No points for compassion awarded there.

My husband and I were able to put a program in place for him within a month of that terrible day. Unfortunately Virginia’s idea of Early Intervention at that time (and still could be now) was to show up a few times a month, “train” me, and let me get on with it. Being a former teacher (albeit one who had taught mostly neurotypical fifth graders) was an invaluable asset in cobbling together a small team of therapists plus me to conduct thirty-five to forty hours of ABA monthly. We were able to work a great deal with him at a very tender age, and I truly believe those early years of therapy prior to starting school at three-and-a-half were instrumental in helping ready him for the structure and rules of acquiring an education, imperative in opening him up to the possibility of learning skills.

After my second son’s regression at eighteen months we were living in New Jersey, where Early Intervention’s approach is totally different. We were able to get thirty-five hours weekly from two different agencies, and took a less structured road with my youngest. He had a year-and-a-half of therapy prior to entering school, and although it was difficult for him at first he acclimated quickly, which I strongly believe was due to the instruction he received as a toddler.

Yes, the theme here is get help as early as you can.

The truth is once you’ve made that leap to get your child evaluated it may take months to get an appointment with a good developmental pediatrician. It will definitely take a few months to get your child evaluated and started on therapies through Early Intervention.

If you have even the slightest doubt that something is different from the norm about your child’s development, make those calls as soon as you can.

I know it made a difference in my sons’ lives. My eldest still resides on the more severe end of the spectrum, and also has OCD, tic disorder, and intellectual disability. Despite all these challenges he remains one of the happiest kids I know.

My youngest has more of a “traditional” life, complete with mainstreaming in school, friends, and many different activities. He too is happy with who he is, and loves his life.

If you have the slightest concern about your child’s development, seek help as soon as you can. I know it made a difference in my sons’ lives, and the lives of many other children on the spectrum. Controversies may rage forever about different autism treatments, but one seems to remain unscathed- early intervention.

Make the calls.

Ask people for support.

And while you’re dealing with all of that, make sure you take care of yourself too.

 

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April 9, 2019

Take Care of Yourself

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 10:54 am by autismmommytherapist

Every year during Autism Awareness Month I try to write about different themes, ranging from early diagnosis to adult life issues. It’s never a struggle to come up with topics (there’s always so much to write about), but one topic always finds its way into my writing, and it’s one dear to my heart.

No matter what stage you’re in with your child’s autism, make sure you take care of yourself.

There have been a number of times during the years with my two kids on the spectrum that I have not followed my own advice. After Justin was diagnosed at seventeen months I threw myself completely and utterly into his ABA program, and most of my needs were put on hold. When our second child, Zach, was also diagnosed, I again put my needs on hold and immersed myself in his daily program for the next year-and-a-half until he started pre-school. Periodically throughout the years we have gone through soul-sucking times with our oldest- sleep issues, eating issues, aggression issues, and most recently, discovering that he’d developed tic disorder.

If I’m being completely honest, I wasn’t taking my own advice during most of these periods.

I have learned over the years that when my kids are really suffering I am not very good at taking care of my needs, but I will say during this last difficult period with Justin I improved from past experiences. Fun was pretty much off the table, but I was able to make sure I slept, got to those doctor appointments, and at least took care of basic needs until we got a diagnosis and a treatment plan. I did better with this last crisis, and although I’m hoping for calmer waters as we move on the truth is autism issues are cyclical, and I’ll probably experience soul-sucking times again down the road.

But this time, I’m better equipped to deal with them.

It is so important to figure out what you need when your family is in crisis with your child, or even just going through incredibly difficult times. For me I’ve learned that sleeping and eating are essential (when my kids are suffering that is pretty much the only time in my entire life I forget to eat), and I try to simplify my life whenever possible so I can focus on them. I have learned over the years however that often this is not enough- that I need to focus on that fact that we will weather this crisis too, just as we have others in the past. It’s important for me mentally to remember how much we’ve conquered as a family- that we do have wonderful periods with the boys, and fun times will come back again (and one of my needs is definitely having fun).

And I’m proud to say we had some family fun just this past weekend with our youngest when we took him to Washington, DC, his parents old stomping grounds, for a weekend just about him (and a little bit about his parents too).

It literally takes a village for Jeff and I to get away for a weekend (no less than four adults were in attendance this past weekend to cover Justin during our 72 hour getaway), and it was a tremendous amount of work on everyone’s part. I literally started planning it three months ago so we could acquire the child care, and it was worth every minute of the planning I needed to do to make sure Justin’s needs were met and our other son had a fantastic trip. Our weekend gave me and my husband some time together out of our house, and gave us some important time with our youngest that made him the priority. One of my needs is making sure Zach has a great childhood, and this weekend I felt like we achieved even more memories toward this goal.

In addition, I got my DC fix too.

Wherever you are with your autistic child, try to take care of yourself too. As his or her parent you are the most important person in their life- if you’re happy, there’s a better chance they will be too.

And when you can, and this is so important, find your fun. Make a plan, put anxiety on hold if you can, and do something great for you. It’s important for your health and well-being- and both of those things are integral to the well-being of your child as well.

During Autism Awareness Month and beyond, remember to always take care of yourself too.

 

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April 2, 2019

World Autism Awareness Day: A Call for Compassion

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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March 11, 2019

Compassion at the Cinema

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:43 am by autismmommytherapist

This past weekend I had the opportunity to take Justin to see the last of the “How to Train Your Dragon” movies at our local theater. This is a series we have both loved, as evidenced by the amount of times he has chosen to play the DVDs of the first two movies on his DVD player.

Here’s a secret- I love the franchise as much as he does.

Justin did spectacularly at the cinema, however there have been times in the past when attempting a movie was an epic fail. At times he has just been too loud for me to bring him to anything but the sensory showings, which have since been discontinued. Then there was a period of a few years where he’d leave as soon as the popcorn was finished.

Eventually there was a period where we’d never even make it past the previews.

The truth is (if you haven’t figured this out by now) that I am stubborn, and although we took some cinematic breaks, I always knew I’d give it another try. He is still loud sometimes. When he’s excited he bounces up and down in his chair.

And I can honestly tell you that this weekend nobody gave a damn.

Now that we can pick our seats (a Godsend!) I strategically choose the back row, end seats. Given how loud these movies are I usually only have to worry about the people just to the right or left of us as the people in front are too far away to be affected. This past Sunday I had the good fortune to sit next to a mom to whom I introduced myself, told her about Justin, explained about the possibility of bouncing and vocal utterances, and waited to see her response.

I got back a smile and a “No problem, it’s perfectly fine.”

To me, that’s just pure joy.

I will be honest and tell you that ten years ago I would have cared a great deal more about what someone thought of my son’s deep-voiced vocals. At this point he’s not much louder now than many of the toddlers who frequent these films, and I can rein him in when he really gets going. I will tell you however that having someone sit next to me who got it and truly didn’t care if my teen got excited watching a kid’s movie just put me at ease.

And given this life, I truly enjoy things that put me at ease.

With Autism Awareness month fast approaching, I am just so grateful that people “get it,” both for me as a “seasoned veteran,” but more for those families whose children have just been diagnosed or are dealing with extremely challenging situations. A kind word can make all the difference- understanding and acceptance can literally change a family’s day from negative to positive.

So thank you, stranger in a movie theater on a rainy Sunday. I hope people read about you and are inspired to mirror your compassion.

Thank you!

 

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March 1, 2019

Autism New Jersey Transition Conference

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:32 am by autismmommytherapist

This past Monday I had the good fortune to attend the Autism NJ Transition conference with a dear fellow autism-mom friend. I have to admit I wasn’t sure what to expect- would I be overwhelmed, or would most of the information be redundant since I’ve been watching a number of seminars from various organizations regarding this topic. I have to say at the end of the day I felt it had been a good investment of my money and time, in part due to the informed speakers (and in part due to the fabulous lunch buffet- food is important at these events). There was one huge reason to go however, and I encourage anyone with a child who’s fifteen or older to consider attending.

Honestly, just the vendors alone made it worth my time that day.

I don’t want to take away from the speakers who did a wonderful job both breaking down the mysteries and the intricacies of the DDD and explored long-term disability planning.The first workshop I attended truly explained the ins and outs of applying for DDD eligibility, both the timelines for applying and the different possible outcomes I could expect. The speakers also discussed the order in which I will have to apply for assistance for Justin and the measures I’ll have to take- first guardianship, then applying for SSI/Medicaid, then DDD eligibility. They also touched on the importance of a good support coordinator, and how crucial it is to check out possible daytime programs before committing my child to any of them. I also attended an excellent workshop on long-term disability planning, which confirmed that my husband and I have gone in the right direction in planning for Justin, and taught me some tips to keep in mind for future decisions.

Since I’m a planner, the two-and-a-half hours were well spent.

If I’m being perfectly honest however, the part of the event which made me feel incredibly optimistic about Justin’s future and dispelled a lot of my fears was meeting the vendors. In about five years I will start the process to select a support coordinator who will be instrumental in helping me acquire adult services for my son, including a day program, and perhaps even a few hours at a job site or volunteering. I felt like my friend and I met a number of people who cared passionately about what they do, and were eager to answer our questions. I will tell you that we soon streamlined our “opening bit” with all of them, first by telling them we lived in central Jersey in case they didn’t service our area, and also letting them know our boys were on the more severe end of the spectrum.

This saved us from wasting time with agencies who only worked with clients in the north or south or high-functioning adults, and allowed us to really focus on those who could work with our sons. One of the pieces of information we learned at the first workshop is that certain agencies are allowed to skip the final approval process with the DDD, this speeding up the onset of services as our sons aged out of their educational entitlement. I have heard that some families wait until up to six months after graduation for adult services to start, and I know I personally would like to fill that gap as soon as possible since my son likes to be out and about in the community.

We even met one support coordination agency who only permitted their employees to service clients within the county in which they lived so they would be on top of all the best opportunities for them, which I felt was a fantastic idea. I encountered one who already worked with my son’s school, and one so enthusiastic about what they do they’d emailed me thanking me for my time before the day even ended.

I enjoy that kind of service.

The other reason meeting the vendors was so great was that I got to talk to different agencies who handle day programs for autistic adults and other adults with disabilities, and had the opportunity to really get a feel for what a day in the adult world might look like for my son. I was able to talk to several who had facilities in our area, and was again struck by the enthusiasm with which they spoke about their jobs, their activities, and the adults with whom they worked. As I am convinced a daily program will be best for Justin, this put many of my “oh God the cliff is coming” fears to rest.

And yes, those fears are daunting- anything I can do to ameliorate them is fine by me.

All in all, I really recommend this conference for anyone whose child is approaching the age of twenty-one. It was both informative and reassuring to see how many different agencies are working in New Jersey to provide fulfilling lives for our kids who are aging into adulthood. I’ve saved every flier (and made notes, I’ll never remember all I learned five years from now), and I feel better prepared to meet the challenge of creating a safe, productive, and happy life for my son.

In the end, there’s nothing more important than that.

 

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