June 29, 2015

Lean In

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 8:10 pm by autismmommytherapist

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A few months ago a dear friend of mine lent me “Lean In” by Sheryl Sandberg. On the off chance you live under a rock and haven’t heard of the book, in her writing Ms. Sandberg used research to explore gender differences and offer practical advice to help women achieve their goals. The friend who lent me the book, the one who left a successful full-time career to work part-time and be home more with her children, said at one point she wanted to throw it across the room.

And while I enjoyed reading most of it, I understand that impulse too.

I worked as a full-time educator for a dozen years before I had my first child. At the time I planned on taking two years off to be with him (I was guaranteed my job back, have to love education) and then planned to return to work, after which I’d hopefully crank out another child a year or two later.

Ah, plans.

After six months of being a stay-at-home mom I began to realize something was very different about Justin’s development. We didn’t receive an autism diagnosis for another eleven months, but that entire year it was blatantly apparent to me that his differences outweighed his similarities to my other friends’ kids. I ended up resigning my position, and because Early Intervention in Virginia in 2004 was quite frankly pathetic, I ended up being trained in ABA and delivering thirty hours of services a week to my own autistic toddler for the next fifteen months.

I consider that “leaning in.”

I only work part-time now, will probably never use my M.Ed and become a school administrator as I’d once hoped. In our family my husband is the one who brings home the proverbial bacon, and since he travels often for work someone needs to be home to get the kids to school, etc. That someone is me, and due to his work schedule I often say we’re channeling 1950 here, with traditional roles that harken back to my grandmother’s day. And while I will always wonder what might have been, I’m okay with it.

And eleven years after my eldest son’s diagnosis, I am still leaning in.

Me and all the “special ed moms” I know (hell, all the moms I know) are leaning in. Whether we work or not we’re leaning in to IEPS and annual reviews. We’re leaning in to being class moms and serving on committees at school.

We’re leaning in when we take on the herculean task to find an appropriate social skills group for our high-functioning autistic children. We lean in every time we help another family with advice or a connection. We lean in with our writing, and with our public speaking to demystify autism and hopefully inspire other families. We lean in every time we come up with an educational strategy that helps level the playing field for our kids. We lean in with our late nights reading everything we can about autism. We lean in with our trips to hospitals for overnight EKGs, for seizures, for feeding issues.

Hell, we lean in with the amount of laundry our kids generate.

In all the years I’ve been home I have yet to meet a “slacker mom,” whether these women work outside of the home or within. I’ve found the women of my generation to be more accepting of each other’s choices than articles I’ve read on the subject, and that makes me glad, because what we really need from each other is support and acceptance.

We’re all leaning in- it just may look a little different from mom to mom, just as our autistic children’s outlooks may be different than ours.

And as I finish my writing today, it’s time to put that book back on the shelf and get to work.

 

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June 22, 2015

Ten Things to Do After Your Child is Diagnosed with Autism

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 6:47 pm by autismmommytherapist

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Last Friday I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry, whom I’ve long admired, and I truly enjoyed the opportunity to talk about my writing and my life with the boys.

I love talking about them every chance I get.

Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what were some of my initial reactions when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the latter query that had me thinking as I navigated my way out of Jersey City and tried desperately not to end up in Manhattan.

Yes, I have a GPS. Yes, my home is in the opposite direction of New York City. No, none of that makes a difference.

After I found my way cheerfully back to the Jersey Turnpike South I allowed myself to think back over the interview, and that last question stayed with me. Frankly, by the time Justin was diagnosed I’d noticed his differences for almost a year- putting a label to them was almost a relief.

Eleven years ago nobody was diagnosing children under eighteen months- the fact that Justin got the autism label at seventeen months was an anomaly. Today however, some children are given a suspected diagnosis as early as six months; many parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label will come as a shock- perhaps their first reactions will be denial, anger, fear, and finally wondering if somehow they caused autism their child.

At the very least, most parents will probably feel overwhelmed.

There are things parents of newly diagnosed children can do in the first weeks and months that can truly help those overwhelmed feelings. Here are my top ten that I did eleven years ago, and recommend to all of you:

1) Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.
2) Make friends with other parents of autistic children. They will turn out to be wonderful resources, and will also provide invaluable support.

3) Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!

4) If you are married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.

5) If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.

6) If it’s too hard to tell people ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.

7) Check out the Autism Speaks website and take a look at their tool kits. There’s a lot of valuable information there!

8) You will probably feel overwhelmed. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will help you feel more organized.

9) If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child they haven’t walked in your shoes. Telling them up front that you just need to vent can help.

10) Take care of yourself. Keep doctor appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!


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June 15, 2015

Extreme Travel and Autism

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 10:52 am by autismmommytherapist

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Every once in a while I get asked to write a piece which highlights the accomplishments of families with autistic kids.

This week I had the opportunity to do an interview for the Travel Channel about a family with an autistic son who journeyed 13,000 miles by canoe, container ship, ferry, pony, and their own eight feet (among other methods of transportation.)

They are my new travel heroes.

Bruce and Christine Kirby, a photojournalist and psychologist respectively, decided never to let having small children or autism in their family dampen their wander lust. Bruce has traveled to over eighty countries, and logged more than 2,000 days of expedition travel. Christine has explored over sixty countries with Bruce and is determined to share these memories with her children. They informed me that each journey has brought its own struggles and rewards. Their biggest adventure yet was to take their two young children, a neurotypical three-year-old named Taj, and their high-functioning autistic son named Bodi, from their home in British Columbia to Ladakh, India.

They didn’t just survive the trip. They thrived.

Being a mom of two autistic sons myself, one severely affected and one high-functioning, I had many questions. The thought of this kind of travel with a child on the spectrum seemed impossible to me. Often we struggle to keep our son Justin at our relatives’ home past the appetizers at Thanksgiving. The thought of such difficult travel was unimaginable. Christine and Bruce shared that if Bodi was severe they would not have been able to undertake their journey.

Fortunately for the Kirby family Bodi has turned out to be very adaptable, although he still underwent many of the challenges myself and many parents of severely and mildly autistic kids face. I asked Christine how they tackled changes in routine, and she replied every day although different had its own rhythm, and they tried to stick to that rhythm as much as possible. When I spoke of my son’s aversion to crowds she told me they always spent part of each day in a safe and quiet space, and brought headphones for Bodi when he needed them. When their kids had meltdowns (and trust me, their neurotypical three-year-old had them too) they made certain to find that quiet space and wait for each child to calm down.

Given that for years my severely autistic son ate three things (and they weren’t fruits and vegetables) I queried Bruce regarding the kids’ diets. He assured me Bodi was actually game to try very exotic delights, including scorpion (this would have been a deal-breaker for Justin.) After I brought up my son’s sleeping difficulties Christine and Bruce told me their sons had been sleeping in tents since they were infants and were just used to it.

Justin didn’t sleep through the night until he turned one. Perhaps I should have tried camping.

After discussing the challenges of their journey I asked them to share the surprises. One was Bodi’s penchant for being photographed while on their trip. Bruce also told me that his biggest surprise was how extreme travel taught his kids to be flexible, from the exotic foods to the missed trains. Flexibility remains one of my sons’ greatest challenges, and I suspect that’s true for many autism families. Bruce said their newfound flexibility has translated into their everyday lives.

I might have to break out that camping gear yet.

I asked what Bruce would like other autism families to know about travel, and he felt it important to say that all worthwhile travel does not have to be on such a grand scale. Not everyone can trek to the Himalayas after all.

However, Bruce strongly felt that families should not limit themselves- try to travel if you can, be open to whatever happens.

Although I haven’t applied those words as exclusively to travel as the Kirby family has done I found this sentiment to have the ring of truth. We’ve pushed both our kids’ limits, and often have been rewarded with incredible growth.

Sometimes challenging them works- sometimes not.

But at least we know we’ve tried.

The Kirbys shared their goals for their next voyage with me. Christine indicated they might next attempt Antarctica by way of South America (apparently they have great wine there,) and while I don’t envision checking out the frozen tundra with Justin any time soon, I admit after speaking with both Kirbys I felt quite inspired to venture out of our comfort zone. Our family is attempting Disney again in the fall, and I must remind myself to let go of travel-associated fears and enjoy the moment. Justin needs to be brought out of his safe cocoon- he will be asked to do that many times when I’m no longer here. In the end, many of our excursions may not work, from a turkey dinner to the most magical place on earth. But we’ll never know unless we try.

And I can’t wait to see where the Kirbys go next.

“Big Crazy Family Adventure,” premieres Sunday, June 21 with back-to-back episodes at 9:00 p.m. & 10:00 p.m. ET/PT on the Travel Channel. The series is comprised of nine hour-long episodes.

http://www.multivu.com/players/English/70380510-travel-channel-big-crazy-family-adventure/


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June 9, 2015

Not Enough

Posted in AMT's Faves, My Take on Autism tagged , , , , , at 1:19 pm by autismmommytherapist

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A month or so ago I posted a piece on the Autism Speaks website for Mother’s Day entitled “Ten Things I’ve Learned as an Autism Mom.” The piece got a great response, with many people commenting that the fourth item on my list truly hit home. It reads as follows: “You will worry about what happens to them when you’re gone. This one you will never conquer.”

All I can say is, truth.

This next statement may surprise or anger some of my readers, but it’s my truth too. I wouldn’t change that my kids have autism. I believe at least in our case the reasons are genetic, since all of my kids have the disorder. I believe it’s a fundamental part of who they are. I’m not sure I have the right to change it.

But if I could somehow alter the severity of my eldest son’s disorder, I would.

My youngest son Zach, who is high-functioning, has mild challenges with sleep and anxiety, and moderate challenges with focus and impulsivity. I currently feel (and ask me this again down the road) that the gifts of his autism mitigate the challenges- his ability to read at three, that fact that he remembers everything, his insatiable curiosity, and his hyper-focus when fascinated by a subject. Zach has learned to embrace his differences, at present feels good about them. We focus on the positive aspects of his autism here, and so far, so good.

With Justin however, his type of autism precludes him from living an independent life. And I know I will go to my grave wishing things were different.

Over the past eleven years since Justin was diagnosed I’ve done a lot of soul-searching. When he first received the “a” label I was set on total “recovery” for him, wished for college, love, friends and a career for my boy. I wanted nothing less than an eradication of his disorder. When it quickly became clear this was not in the cards for us I shifted gears and strove for him to be at least independent, able to take care of himself after his father and I are gone.

It’s clear now that wish won’t be granted either.

Still, as time has passed I’ve come to see that Justin is happy as he is, is often the happiest person in our house. I don’t believe he wants the aforementioned things in his life- I am confident he does not know what they are. I’ve accepted he won’t have all of my pretty life options.

I’ve also accepted he doesn’t need them to be happy.

What I haven’t accepted is that the severity of his disability renders him unable to care for himself, which puts him at risk for up to forty years after his father and I are dead. This truth remains, and will always be, unacceptable to me.

In fact, it haunts me.

I shelve these thoughts most days for my sanity. The worries are always there, just looming below the surface, ready to rear their ugly heads when I least expect them. If someone were to hand me a pill that would lesson his symptoms and enable him to take care of himself one day, I’d be first in line at my pharmacy.

And I run fast.

I know some readers will think I’m horrible for wanted to change him in any way. But of my three wishes for him, namely that he spends his eighty years on earth happy, productive, and safe, the last wish trumps all.

I don’t believe even with the few medical advances that autism research has brought about that I’ll ever have the option of lessening his autism. The truth is if I want a modicum of happiness for myself, I’ll have to focus on what we have now- a happy, bright, loving child who at this moment in time is wondrously safe.

I will continue to have to learn to live with that much.

But some days, many days, it’s simply not enough.


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June 1, 2015

Birthday Joy

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 1:04 pm by autismmommytherapist

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It’s a pretty tableau. My son sits among strewn tissue and wrapping paper, claiming his prize, his birthday presents. I watch as my husband places his gifts into outstretched arms, see my son eagerly tear apart the carefully taped paper I so lovingly adhered for him. He frees the toy from its constraints, and I sit back in my chair to take a picture and capture the moment for all eternity. I look through the lens and prepare to click.

Then I see him smile.

It sounds silly to devote a post to a child smiling at his birthday presents. But for more than a decade my son has approached his birthday, and almost everything typical people deem “fun,” as a solemn ritual, a task to be organized.

Generally it is difficult to even get him to finish unwrapping his take- I’m usually going up against his OCD, his need to organize rather than unwrap.

But tonight is different. Tonight, he shows joy.

And as I watch him exuberantly rip off paper and dive into bags I allow myself a moment to revel in his glee, and put the camera to the side. I think about how grateful I am that he’s demonstrating his joy, because so often in situations I think will make him happy I’m left guessing, wondering if he’s truly enjoying himself.

Tonight I don’t have to guess.

He treats each gift with a mixture of awe and amazement, then wraps up his endeavor with his lyrical laugh, and bestows a huge hug and kiss on his mama.

He loved tonight. For once, I got to know that he adored a timeless ritual that most people take for granted their children will love.

And I join him in being happy.

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May 27, 2015

Autism Speaks Housing Initiative

Posted in AMT's Faves, My Take on Autism tagged , , , , at 10:49 am by autismmommytherapist

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I have a son. A beautiful, smart, kind and severely autistic son. A boy who emits volumes with his eyes, but only a few unprompted words with his mouth. A son for whom I hope to plan a future where he is cared for when we’re gone- a future where he is safe, productive, and most of all, happy.

For years I have worried about his future living arrangements. The current waiting list for residential services in my home state of New Jersey is lengthy. Where he will one day reside is something I perseverate over; I have even begun to research options in other states, and found the landscape of choices for autistic adults to be extremely limited.

Still, I refuse to give up hope. Because while I adore my son, his father and I literally can’t live with him forever. And as I watch my boy’s increasing desire for independence grow daily, I’d like to see his needs realized in a residence apart (but close) from ours.

And with Autism Speaks’ new housing initiative, I just may see our collective dream realized.

Autism Speaks has recently launched a plan to focus on adult services in several states, namely Florida, Illinois, and my personal favorite, New Jersey. These three states were selected in large part due to their respective grass roots advocacy, their budgets, and unfortunately, their long waiting lists for residential services for adults. Through Autism Speaks I found out that the focus on the adult housing component of this initiative is comprised of three parts- namely finding the funding, acquiring the right physical structure itself, and of course hiring quality service providers to care for the autistic adults themselves.

All of these goals are difficult to achieve. But I am convinced Autism Speaks is up to the challenge.

Although our family is at least a decade away from seeing Justin potentially reside apart from us, there are steps Autism Speaks recommends we and families in our situation take now to help build a positive future for our children. First is access the Autism Speaks Transition Tool Kit, a document which outlines the steps necessary to plan for an autistic child’s future after school ends. As the time for independent living draws near Autism Speaks also recommends families become familiar with service providers in their respective areas, and encourages families to ask tough questions such as what plans have providers put in place to make sure they stay in business for the long-term.

From speaking with parents who are already at this juncture in their lives I’ve been told that the families most successful in securing residential services for their child created a team. The team should consist of the parents, potentially the child’s school, and the autism agency (like the ARC or Easter Seals) providing current services for the child. Parents have recommended to me that it is helpful to become familiar with local legislators, and it is a good idea to establish a relationship with the people in local government who make the big decisions. And last, it’s been suggested to me that parents should contact other parents who have been successful in finding safe housing for their children.

As with so much in our community, parents are always one of our most valuable resources.

There is a lot of hard work for Autism Speaks ahead, but hopefully through their initiative they will be able to give families some real and positive choices. One of their goals is to chip away at the waiting lists in the above-mentioned states, an endeavor in which I am especially interested. My son is almost twelve, will be graduating in nine short years. The current waiting list for residential services in New Jersey is about a decade, which means his father and I will be pushing sixty when he graduates from high school. I’d like to see him well-settled as he emerges into adulthood, see his life continue to unfurl as one that is happy, productive, and safe.

And I believe with a lot of planning and support from Autism Speaks we can make this dream come true.

 

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May 18, 2015

Wedding Vows

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 12:42 pm by autismmommytherapist

POAC Gala 008

Eleven years ago this fall my husband Jeff and I made our official debut into the world of autism, when our then eighteen-month-old son Justin was given the diagnosis of PDD-NOS by a lovely and very caring developmental pediatrician. At the time she didn’t want to give him an official autism diagnosis both because he was so young, and because he was so affectionate with his parents. As the visit concluded she recommended that we have him seen by either Georgetown hospital or Kennedy Krieger Institute when he turned two, and since Georgetown was closer, we went in that direction. We hunkered down for six months and did thirty hours a week of ABA therapy ourselves (at the time Virginia’s Early Intervention system didn’t recognize an autism diagnosis,) and waited for the big day we’d finally get the “A” word. We figured since it was “elite” Georgetown Hospital things would go fairly smoothly; we’d get the official diagnosis we’d eventually need for a pre-school handicapped program, and that would be that.

We could not have been more wrong.

Everything ran fairly smoothly at the hospital until we had a lengthy wait for the examination by their developmental pediatrician Dr. L (my theory is your wait-time for a member of the medical profession is directly proportionate to how important they feel you should think they are.) Justin let his displeasure be known throughout the entire physical exam (I often wondered if the physician or the two-year-old would prevail,) but finally she finished. I then made the mistake of asking her if there were any tests that would help determine the causes of Justin’s intermittent reflux, diarrhea and constipation, and she replied in the negative, then brightened considerably. This incredibly taciturn doctor actually looked like she was headed for a spa day.

Beaming, she let us know that there were no tests to be conducted on these issues, but that Justin should definitely get a twenty-four hour EEG. When I asked if there were any studies out there that showed this test could actually produce results that would help autistic kids, she excitedly told us that her colleague Dr. Z was performing a study on overnight EEGs, and if we were lucky there would still be room for Justin to participate. She then pointed out the pictures lining the walls of the room that showed a number of children with intimidating head gear. All of them were smiling, looking at the camera, and were peacefully wearing what looked like an alien football helmet strapped to their skulls.

I sensed with Justin we wouldn’t even get one damn electrode on his little head.

I reiterated my question about how this could possibly help my son, and looking deeply offended, our developmental pediatrician of the day responded that we would be helping science, implying how could we ask for anything more? Jeff and I locked eyes, and I saw that his expression of exasperation, fatigue, and a slight dose of hilarity mirrored mine. That was the moment I knew my husband and I would make it. We were a team. We were in this together.

And we both thought Dr. L was full of crap.

We’ll be married nineteen years this month, and while our journey with autism has certainly had its share of bumps along the road, we’ve weathered them all together. We learned that for our marriage to thrive and not just survive, we had to take time for ourselves individually. We learned we had to carve out time together without our kids, even though it’s stressful to make those occasions happen. We’ve learned how to cover for each other when one parent has had enough, and we’ve learned how to ask for outside help, which wasn’t easy for us. Finally, we’ve learned how to find the humor in almost any situation with our kids, which I believe is the glue that’s actually kept us together the last twelve years.

We learned how to take a deep breath and rely on each other. He’s my partner and my friend, and I wouldn’t want to walk this road with anyone else.

 

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May 11, 2015

Birthday Boy

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 12:37 pm by autismmommytherapist

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My boy turns twelve tomorrow.

It was just yesterday I held you in my arms, curled like a comma into my love.

You are two-thirds of the way to being grown, and every day reveals more glimpses of the man you’ll become.

There are so many things to celebrate.

Your smile that lights up the world; I will do anything to elicit it.

Your perserverance in the face of any adversity.

Your unending patience with your little brother and his demands.

Your innate intelligence, and how you push yourself ever forward to achieve your goals.

Your words, in part because it helps your communicate, but mostly because saying them clearly makes you proud.

Your ability to inhabit the present moment.

Your abundant affection, which you shower upon me throughout the day.

How hard your work in school every single day.

Your ability to inspire everyone in your life to be their best selves.

Your inherent joy in the world around you.

Happy birthday to my sweet boy who made me a mom, my best job yet.

I love you!

 

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May 4, 2015

Ten Things to Tell a Special Needs Mom

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:59 pm by autismmommytherapist

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Eleven years ago my husband and I entered a developmental pediatrician’s office with our then seventeen-month-old son, Justin. We were both nervous and resigned, anticipating, and in some ways welcoming, the autism diagnosis we were sure our boy would merit. Four years later we would retrace our steps in a different state with our second son, Zach. On this occasion we were much less scared, even eager to get a diagnosis to help us to access services. It wasn’t that we were less concerned about the progress of our second child. It’s just that by then we’d been doing the “autism gig” for the length of a presidential term, and we had a pretty good idea of what to expect.

Those four years had taught me indelibly what it means to be a special needs mom.

I learned so much from my eldest child, and then again from my youngest. I learned about my limits, and how to stretch them to accommodate my children’s needs. I learned about the endless boundaries of love, and how to summon patience I didn’t know I had. I learned so much, knowledge I wish I’d had at my fingertips when my first child was diagnosed.

If I could go back in time, these are the ten things I’d tell myself about my impending journey of parenting two children on the autism spectrum:

1) You will revel in even the smallest increments of progress, progress you would not have noticed if your children were typical.

2) You will learn to always push your children to do a little bit more than you think they can.

3) You will learn how to be flexible (this one remains a challenge for me.)

4) You will worry about what happens to them when you’re gone. This one you will never conquer.

5) You will irrevocably alter your definition of what comprises a successful childhood.

6) You will learn how to ask for help (this one remains a challenge too.)

7) You will learn how to listen, really listen, both to your one son’s vocal attempts and to your other’s complete sentences.

8) You will learn, through lots of practice, how to be patient.

9) You will learn that the inability to speak does not mean your son does not have a lot to say.

10) You will learn, perhaps most importantly, to make time for yourself.

My heartfelt wishes for a Happy Mother’s Day to all moms, particularly those in the autism community!

For more on my family visit my blog at autismmommytherapist.wordpress.com/

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April 27, 2015

Into the Woods

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 2:05 pm by autismmommytherapist

This past weekend, yours truly, the official “girly-girl,” roughed it in the woods of Allaire and went camping. By camping I mean REAL camping, without a heated tent (someone had one, was so jealous!) smelly port-o-potties (two for seventy-five people,) and no running water. Did I mention this was a Cub Scout event, so no “Mommy juice” allowed either.

What we won’t do for our children.

We survived, and parts of the adventure we even thrived. I learned that Zach can only handle so much unstructured time on one of these trips, and I’ll plan accordingly next year (yes people, this is a “one-night-a-year” affair, I have my limits.) I figured out that assembling/dissembling a tent is beyond my skill set (along with cooking and various other tasks,) and yet managed to find a way to get my “tent needs” met (thanks again Bob, Angie and Ty!) I learned that my son doesn’t feel the need to say the Lord’s prayer if he’s sleeping with his mommy (which I found so adorable I really wanted to celebrate with the chocolate I forgot to pack.) I learned that even with three pairs of warm socks my feet will be icicles from the ankles down (I foresee a pair of “camping Uggs” in my near future.)

Most importantly, I learned to let go and have fun.

While this will sound somewhat less important than learning how to meet my camp housing needs, I assure you it’s not. For years I labored under the illusion that if I just had enough information I could control the outcome of any event involving my two autistic kids. After a number of birthday parties, holiday dinners, and hell, just trying to get them to eat something, my stubborn little brain finally figured out my inner control freak would not win in every situation. Eventually, I slowly let that little goal (along with having skinny thighs) go by the wayside. The anxiety regarding things that were supposed to be fun (but often, let me tell you friends, were not) lingered however, and for years I found myself dreading taking my kids places that for 98% of the population were enjoyable.

Okay, maybe kids’ birthday parties are not that enjoyable, but you get what I mean.

This weekend I put all my autism-related anxiety aside and just had some good old-fashioned (unfortunately teetotalling) fun, and went with the flow. When my boy had some social issues and wanted to go home I didn’t automatically go to my freak-out place, and managed to calmly talk him out of it. When the offer of a night hike was something less than alluring to my son (who’s not a big fan of the night to begin with) I got him to go anyway.

He later said it was his favorite part of the trip (next to sleeping in a tent with his mommy, yes he earned extra technology time with that one.) When I realized at 2:15 AM my frozen feet would be keeping me up for the rest of the night, I actually just relaxed and made a list of (SPOILER ALERT!) of how many ways the last episode of Grey’s Anatomy pissed me off (really Mer, you forget to call Der’s sister the neuro-surgeon to the scene as a just in case?)

I went with the flow. There was both yin and yang to this trip, but my boy woke up Sunday with a big smile and a proclamation that he wanted to do it again (2016 my dear, 2016.)

He had fun. We overcame obstacles that even two years ago would have done us in. I banished my worry companions to the woods, and for me anyway, relaxed. It’s taken over a decade, but I’m finally learning how to live more in the moment and acknowledge that even the unpleasant ones don’t last forever; that just on the horizon something better will usually come along if I just wait.

I had fun (and a big glass of Pinot Grigiot Sunday night with the accompanying “make-up chocolate.”)

I’ve been in the woods with autism a long, long time. And I just now feel like I’m starting to come out of them.

 

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