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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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 12, 2019

What You’ll Take With You

Posted in Life's Little Moments, My Take on Autism tagged , , at 11:33 am by autismmommytherapist

Yesterday, you turned twelve.

Officially, you are two-thirds of the way “cooked.”

I’ve heard the last third goes by fast.

Even my mom superpowers can’t slow down the passage of time.

I want you to know I’m so proud of your unique soul. I’m proud of your accomplishments of course, but mostly exuberant that you want these things, and you can achieve them.

Within the range of your talents, you can achieve anything.

I would not have written these words a decade ago, only hoped they’d be true, kept them on a shelf in the recesses of my mind to hopefully be brought into the light later on.

You struggled so much back then with your words, your sensory issues, and your sleep (Mom struggled too). My focus back then was on therapy, getting you to uses your words, helping you overcome sensory challenges.

I look back and know there wasn’t much of an emphasis on fun, although I tried.

My solace is you were too young to remember.

You’ve worked so hard to achieve your goals- good grades, friends, advancement in scouts, achievement in karate, and your desire to conquer every lego set in existence.

Your mind, and your heart continue to amaze me.

In six short years you will be a man.

I hope you carry with you some of the child within.

I hope you retain your compassion for others.

I hope you bring with you your curiosity toward the world.

I hope you continue to want to help those less fortunate.

I hope you remember every time we laughed.

I wish you’ll recall all the times I made you your favorite tacos.

I hope you realize how much you are loved.

Happy birthday to my littlest love!

 

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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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