April 7, 2014

Going Solo

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , at 9:15 am by autismmommytherapist

Disney and Halloween 2013 029

To the casual onlooker it was not a remarkable scene.  A middle-aged mom trudging through the rain, huge beach bag slung precariously over her shoulder while clutching the hands of a tween and a younger son, heading for the relative paradise of a movie theater overhang.  If anyone had cared to look they would have viewed a grim determination in her eyes, a desire to reach her destination etched into the lines on her face.  Someone might have wondered why she looked so serious, as it was just a day at the movies after all.

Except, it wasn’t simply that.

It was the first time she’d ever taken both her autistic kids on an outing, solo.

I’m aware that taking two or more kids to run errands or attend an event is not a rare occurrence in neurotypical world, and to some extent not in the world of autism either.  Trust me, my reticence in bringing both boys out on my own was not due to a lack of desire, but rather due to a need to keep both of them safe.

For the last few years Justin has often refused to remain in even the most entertaining locations for more than half an hour, and until now brokering deals with my younger son about leaving places early was simply not in the cards.  Also, both are impulsive and had a tendency to try to run away if annoyed (or in Justin’s case, if he’d sensed a carbohydrate was nearby.)  It just wasn’t safe for us to venture out on our own, so either I’d corral someone to go with me, or we’d stay home.  Since I’m an out-and-about girl this situation did not sit well with me, and I longed for the day we’d brave the wilds of the world just the three of us.

Finally, that day has come.

I was able to make a deal with Zach that if Justin wanted to leave the movie early we’d do so, but that he’d get to view it again at another date.  I explained to him that he had to stay at my side at all times as well, and he comprehended both points, and promised to comply.  I’ve worked diligently with the assistance of a BCBA to get Justin to the point where he can attend an entire film, so I felt confident we had a shot of pulling this off.

Plus, I took them to AMC’s showing of the “autism movie,” where almost any type of behavior goes.  I was not taking any chances.

I have to share with all of you that they were excellent.  Zach stayed glued to my side, and took it upon himself to hold Justin’s hand and guide him to the trifecta of tickets, bathroom, and popcorn acquisition.  In perhaps a moment of divine intervention Justin’s BCBA who was working with another family happened to sit down behind us, so I felt covered.  And last, by parceling out our popcorn supply I managed to satisfy both boys’ junk food requirements, and even got to sneak a few kernels when Justin wasn’t looking.

I’ll share with you that popcorn stealing from Justin is no mean feat.

We had a great time together, enough so that if I really get brave I can contemplate an afternoon at the boardwalk, or perhaps even a few hours at Great Adventure.  I’m certain each time my heart will reside somewhere in my throat for the duration of the event, as with autism things are often unpredictable for my boys.  No matter how old they become I may never entirely relinquish that feeling.

But today I’m going to banish those thoughts and just revel in our accomplishment.

I have to tell you that if two or three years ago someone had told me we’d be able to do this together I would have laughed, and suggested it might be possible once Zachary could drive.  I remind myself as I embrace this new and welcome change that I must keep myself open to their recent forays into independence, help shape them so that more and more things are possible for this family.

As we exit the theater I look down at my smallest son and smile, and ask him if he liked the film.  He replies in the affirmative, and states he’s having the best day ever, a sentiment I hope he retains when I ask him later to clean his room.  Justin is “eeeing” rather quietly next to me, rocking slightly on the balls of his feet as we make our way to the car, a slight grin emanating from his face.  My boys are happy.  I have to remember they’ve matured, that it’s okay to take chances now and again.

And as always, I have to nurture hope.

 

 

 

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July 28, 2013

BCBA to the Rescue…

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 5:22 pm by autismmommytherapist

Summer 2013 050

“Over here Justin” I instruct my eldest son, thwarting his attempt to gain entrance to our garage to make a “trade” of one of his coveted music toys. He resists briefly, but then willingly walks over to our kitchen table and takes a seat, positioned inches from a stack of closed plastic drawers with unknown treasures inside.

Without even prompting him he drops his mini-keyboard on a placemat and opens the top drawer, quickly palming the cracker inside before taking out the activity lying in wait within.

He finishes it quickly, replaces it and moves on to the next drawer without so much as even a gestural prompt from his mom or the BCBA (Board Certified Behavior Analyst) standing behind him. After ten minutes or so he completes all the activities, stands, and happily walks over to where his DVD player awaits him, and is soon immersed in the drama of Toy Story Two. Our consultant smiles at me, and I walk over to my son, and tell him “good job”, and give him a hug.

One challenge conquered, only 5,182 left to go.

My eldest son, who is ten, has severe autism. At this point in his life he is still non-verbal, and most of the time is an absolute delight. He is the child who nestles into my lap at night for a goodnight kiss, reveling in the reading of one of his childhood favorites.

He enjoys playing games with his parents which involve hugs and kisses, and his joy at seeing us after any type of separation is immediate and boundless. Justin is our snuggly boy, but his type of autism comes with some serious challenges. Our family is fortunate in that we have access to an expert BCBA from the private autism school he attends, and I’ve prevailed upon her to help us in this latest cycle of OCD-like behavior which is wreaking havoc on our home, and most importantly, causing great distress to our son. I’m hoping she can help us.

I’m certain she won’t leave until she does.

We’ve weathered many a challenge with Justin over the years, from potty training to sleepless nights, eating problems and aggression. For the most part we have these issues under control now, which is I believe as much due to teaching our son as it is to his inherent desire to please.

The pinching still rears its ugly head at times when he doesn’t get his way, but even these incidents have dissipated over the years. Our remaining challenges (at least at this moment) center around his desire to “trade” toys from bins in our living room to the garage in an endless cycle that robs him of joy, and his desire to leave anywhere our family ventures within twenty-two minutes of our arrival.

Today we’ve chosen to address the first issue, and so far I’m very pleased with the results, although I know the true test will be whether or not I can engage him in these activities while simultaneously entertaining my youngest son and preparing a meal, neither of which I have to accomplish at this exact moment. So far however I’m thrilled we’ve broken the cycle, that he’s beaming, that my happy child has returned.

I am really, really, hoping this works. Really.

It will be up to me to carry out my “homework” over the next week before our illustrious BCBA returns, and I’m hoping to have a good report for our expert. Next week we focus on leisure activities, including staying at our pool for more that five consecutive minutes, and enjoying the Point Beach boardwalk for more than its convenient carbs.

I am hell-bent on my family of four being able to enjoy fun activities together, but with severe autism as a factor, sometimes I need a little help to realize my dreams. Justin’s BCBA brings with her a bag of tricks and much encouragement, but she brings something much more important.

She brings hope.

April 6, 2013

Celebrating Autism Advocates

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

Bobbie 002

April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three advocates who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. All three were recently interviewed to share their experiences. Below is the first interview in the series.

For the past two decades, Bobbie Gallagher has been advocating for autistic individuals. Her actions have led to positive changes in public schools, investigations into the high prevalence of autism in her home town of Brick, NJ, and federal legislation to support autism research and care. She was recently honored by U.S. Representative Chris Smith of New Jersey, who successfully petitioned to have the American flag flown over the US Capitol in honor of her autism advocacy. Bobbie is a Board Certified Behavior Analyst (BCBA) and owner of the Autism Center for Educational Services (ACES), which assists parents and educators in developing behavioral programs for autistic children (www.autismcenterforeducationalservices.com). Bobbie is the mother of three children, including a twenty-one-year-old girl and a nineteen-year-old boy with autism.

Kim: How did you come to be such a strong autism advocate?

Bobbie: “There are really two main reasons. First, we have two children with autism, and there is no autism in our family. We can trace back our family tree a long time on both sides. I kept thinking something had to have happened. My husband and I got involved with a parent support group run by POAC in Brick, and we realized that the numbers of children with autism in our town had grown so much we had to move the support group to a much bigger room. It motivated me to find out what was happening in Brick.”

“I soon found out that life outside our home was much harder than inside because of all the people we had to deal with to get help for our kids, and to investigate this cluster in Brick. We eventually made it all the way to the federal government with studies conducted in our town, but nobody gave us any answers. I’ll never forget receiving a brochure from the Physicians for Social Responsibility, who sent us a document entitled “Inconclusive by Design.” We never did get any reasons for why there was such an increase, but I’m very proud we made it to the federal level with the investigation.”

“The second reason I became such a strong advocate was due to the public school system. We sent our first child with autism out of district, but decided after a while we didn’t want her there anymore, and didn’t want to send our second affected child there either. That was the first time someone told us our district had its own program. After that I started bringing the New Jersey Administrative Code with me to meetings, because people didn’t even know what our kids were entitled to. I’ve found the hardest part about continuing to fight all the time is that we may get change for one child, including a better education and better services, but the schools think that what they provide for five other kids is good enough, and they don’t make broad changes.”

Kim: Tell me a little about your work with U.S. Representative Chris Smith of New Jersey.

Bobbie: “Chris got involved with us right away after we met with him and showed him surveys we had done about the numbers of autistic individuals in Brick. He called the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to get them involved, and then we all met with officials in Washington, DC. He helped open doors for us. With the assistance of co-chair U.S. Representative Mike Doyle of Pennsylvania, he founded the bipartisan Coalition on Autism Research and Education (CARE).

He was also the primary sponsor for the bill HR 2005, the Combating Autism Reauthorization Act (CARA). This bill was signed into law (Public Law P.L.112-32) in 2011, and extends the Combating Autism Act of 2006 for three more years. It was a follow-up to his Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE, Title 1, P.L. 106-310), which allowed the creation of regional centers of excellence in epidemiology and autism surveillance. Although autism had the highest numbers in the disability world, in the past, funding for other disabled groups always surpassed us. This was the first time we surpassed them in funding dollars, and it really helped.”

Kim: How does it feel to have the flag flown at half-mast over the US Capitol in your honor?

Bobbie: “It’s probably my proudest thing, even though I didn’t get to see it! I found out at the annual POAC Gala, but I was just in shock there. A couple of days later it kicked in and I just thought “that is really awesome!”. It’s my proudest moment, it means so much that people recognized what we had done. It was nice to get the recognition for our efforts. If we need to be called in to do something again, we would do it.”

Kim: Where do you hope to see Alanna and Austin in ten years?

Bobbie: “We will probably live in a different state, somewhere warmer where they can enjoy being outside. They’ll be living with us, and hopefully we’ll have enough support for them! I don’t foresee that they’ll be employed, but I do see them being happy. Alanna in particular has a full day, and a full life- she really enjoys it. Austin will always be the bigger puzzle. He is more difficult behaviorally and medically, and challenges us much more. Because of how challenging he can be, he really drives me to do what I need to do. He makes us feel like we always have to do more.”

Autism Center for Educational Services (ACES)

http://www.autismcenterforeducationalservices.com/

(732) 840-1888

September 7, 2011

The Boys of Summer

Posted in Fun Stuff, Life's Little Moments tagged , , , , , , , , at 10:57 am by autismmommytherapist

I recently posted a status update on Facebook that read “Happy School Eve”, and I meant it. As much as I love summer (and I’ve always been a summer girl), there comes a point every season since I’ve given birth where I’m completely over warm weather, long unstructured days with my progeny, and applying sunscreen to said offspring. Sadly, there have been years when my “over point” has occurred in June, which was quite unfortunate for me. This year we made it all the way to Irene, who thankfully left my house and loved ones intact but completely sucked the life out of me (see The “I” of the Storm). I regard this as great progress that I did not succumb to that desperate need to see yellow looming outside my door until the last week in August.

I am really quite proud of myself.

What was profoundly different about this particular hiatus was that both of my children were mostly happy, eager to try new things, and (for the most part) well-behaved. Once I accepted the fact that for the better part of two months I would accomplish nothing other than keeping the kids alive (an inner struggle you would think I would have conquered by now, but is still a work in progress), I relaxed, and truly enjoyed watching them revel in the freedom I so loved as a child.

Over the last few months I had the privilege of watching my youngest son decide he wanted to swim, then conquer the skill in a matter of days. I saw my eldest child master floating in his own pool, as well as take his first tentative steps at attempting an actual stroke. I was witness to Justin’s all-encompassing pride at his equestrian pursuits, and Zachary’s decision to ride the waves solo at POAC’s annual surf day. With the help of my oldest son’s BCBA we were able to elongate Justin’s beach time well past our traditional half-hour stay, and I feel that my boy even grew to enjoy an extended stay on sand and surf again. Last, my husband and I had the pleasure of taking Zach on his first solo Adventure Day”, an outing Zach still speaks about, and one Jeff and I hope to repeat in the near future.

Here are some photos capturing the “highlights” of the season. I feel it’s important to honor these pathways to progress because if someone had told me even two years ago I’d experience a summer such as this, I wouldn’t have believed them. Both boys have made such great strides. Now their mother is relearning how live in the moment.

I hope you enjoy these moments as much as I did. Here’s to a wonderful fall!

(The first time he swam underwater…)

 

(Holding on for dear life)

(The adventure has just begun!)

(The first time he went “solo”)

  

(Always a body in motion)


(Loving the pool this summer!)

(Enjoying being “pushed around” for the first time)

(Mastering the art of the float)

(Thrilled to perform!)

(Relearning to love the beach)


(My beach boy)

(Just two guys out for a swim)

(No caption necessary!)

Hope you had a wonderful summer!

December 7, 2010

Riptide

Posted in Life's Little Moments tagged , , , , , , at 9:07 pm by autismmommytherapist

Rip. Yell. Repair.

That’s pretty much been the state of affairs in our house with Justin since the spring, when a succession of illnesses felled him and the OCD component of his autism came back in raging force. This scenario was particularly difficult for us to adjust to given that we’d spent a few months in what we liked to call “Camelot”, a period in which both boys were usually sleeping through the night (my favorite part), Justin had almost completely quelled his aggressions, and my youngest had made so much progress one of my best friends mock-accused me of faking his autism to make my book longer.

Yes, he’s really autistic. Yes, I have the report to prove it. And yes, we’re still friends.

We knew immediately that the compulsive aspects of Justin’s disorder were back in full form because he unfortunately began exhibiting those frustrating body tics again, the ones in which he shakes his head back and forth so hard I can only imagine whiplash would be a gentler outcome. This time they only lasted for a few weeks, a boon for which both me and his father were grateful. We’ve tried several different medications over the years and dabbled in the world of biomedical alternatives, but after our son has suffered through high fevers, these tics always seem to be the remaining unwelcome guests in our house.

Autism is just such good fun.

To be perfectly honest, I was so grateful to see the swaying leave so relatively quickly that I failed to really notice how a few other unpalatable activities were left in their place, such as the need to tear to shreds anything imperfect within a five-mile radius (hence why my pediatrician removed her remaining wallpaper and painted her waiting room pastel pink and blue), as well as my son’s desire to leave any location outside of his home in under thirty minutes. We subsequently sailed into summer which is always our best season here, and got caught up in a last-minute switcheroo of schools for my oldest, in which the inherent drama of the change took us well into September. As I’ve mentioned before, this has been a REALLY good year for all of us, and so I chose for a time to focus on the positive and ignore for a few months that my son has become “Captain Destructo”, and an episode of “Cake Boss” (yum!) lasts longer than any of our outings.

Denial is a wide, wide, river.

Throughout early fall the realization that these issues have not improved has finally caught up with me, and I acknowledged to myself it was time to exit Shangri-La (okay, OUR version of idyllic) and get back on the ABA horse and ride. I also admitted to myself that part of my reluctance in trying to “fix it” revolved around the fact that I’ve been at this for seven years, at times have handled the majority of his behaviors on my own, and I’m just damn tired.

Thankfully, “Miss M” has come to our rescue.

One of the benefits of my son attending his new school is that they have several Board Certified Behavior Analysts in residence, all of whom actually make house calls. On the day they accepted him I put our names on the waiting list, hopeful that we could at least minimize these two issues that were still plaguing us almost daily. Within two months we rose to the top of the list, and “Miss M” made her appearance at our home for her “get-to-know” you session. She was able to leave me with advice on Justin’s first issue immediately, namely the destruction of any paper or plastic product that offended his eye, and I quickly implemented her counsel.

I realized that intellectually I knew what to do with him to reduce this behavior, but I’d been hung up on the fact that due to laundry/”cooking”/potty training/keeping the second child alive I hadn’t always been able to confront him immediately after he altered something, and that had kept me from making him fix things. Once “Miss M” assured me that the important factor was to force him to repair whatever he destroyed, make said repairs highly annoying (I’m good at that part), and stick to my guns even if the renovations took place six hours later, I knew what to do. I’m happy to say we’ve seen a lessening of destruction, a fact which probably saddens Zachary because he LOVED to tattle on him.

Autism or not, they’re still brothers.

His second and most daunting issue, his desire to leave the premises in the amount of time it takes to watch a sitcom, will be more difficult to handle, but “Miss M” is confident. I’ve shared with her that part of the problem is Justin’s outgrown many of the activities that made him so happy over the years, because although he’s autistic, cognitively and developmentally he’s often peer-appropriate. Frankly, the museums for kids under six and most local playgrounds just aren’t doing it for him anymore. He would kindly prefer to go to Great Adventure every day, and if I’d let him, frequent the section of terrifying roller coasters I refer to as the place where mommy will undoubtedly stroke out. When it comes to adventure, this kid shows no fear.

So, in an effort to discover some new activities that Justin can do when he’s both seven and seventy that won’t kill his mother, we’re decided to give bowling a shot, and we’ll be implementing a timer to show him he’s not allowed to leave after just two frames. I’m eager to see how this event will go, given that we’ve attempted this type of field trip once before when he was five. That day I spent the better part of his classmate’s birthday party chasing him around from pinball machine to pinball machine, all in a desperate attempt to keep him there long enough to sing happy birthday to his friend and eat some cake.

Hell, I had it on good authority it was chocolate with REAL buttercream frosting. Hyperactivity be damned, this girl was going to have her cake AND it eat too.

We’re trying the bowling lanes mid-week, and I just have to say that I’m so appreciative that someone else will be there with me to do the literal heavy lifting, as I’m certain Justin will find this activity as entertaining as the teeth cleaning where mommy forgot his favorite videos (yes, that has actually happened). I’ll let you all know how it goes, wish us well.

And I promise, no matter what happens, no jokes about striking out.

November 16, 2010

Gratitude Attitude

Posted in Fun Stuff tagged , , at 7:04 am by autismmommytherapist

Today’s Gratitude Attitude goes to Miss M, our Board Certified Behavior Analyist extraordinaire, for agreeing to provide our family with a dozen hours of expert Applied Behavioral Analysis techniques over the weeks to come. Although Justin’s come a long way over the years, there’s always room for improvement when it comes to behavior (isn’t that true for us all?), and we are thrilled to benefit from her expertise. To our delight, the divine Miss M has already made some suggestions in that arena that work both theoretically AND within the confines of an extremely busy family. We are very appreciative of her time and look forward to working with her over the next month!