May 30, 2017

Ten Things to Do After Your Autistic Child’s Program is Set

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 2:00 pm by autismmommytherapist

It seems impossible, but somehow you’ve crossed everything off your initial to-do list, and your son or daughter is set. Maybe he is now firmly ensconced in an Early Intervention program, and you’ve already booked the eight million school evaluations required to get him into a pre-school program. Perhaps your daughter is older and has just entered a classroom, spent a few weeks there and is doing well. You’ve dotted your I’s and crossed your T’s, and for once there’s no phone call to make, no appointment to schedule. You’ve gotten the help your child needs.

And perhaps as you’re enjoying a latte (which I hope you are, you deserve it), you wonder what’s next.

First of all, make sure you savor the moment. Take the time to celebrate your successful navigation of your state’s Early Intervention system or your school district’s IEP team, and give yourself about twenty hugs and buy yourself a little something fun.

Then take a deep breath, gird your loins, and move on to the next phase of your life with an autistic child.

I remember being at that phase, with my eldest son who is severely autistic being enrolled at three-and-a-half in a full day pre-school program and pregnant with my second child. While part of me wanted desperately to sit in bed all day and watch “Sex and the City” re-runs, I knew there was still a lot to do that I’d put off while trying to get the appropriate services for my child and dealing with our move to a new state. Here are ten things I did (or wish I’d done) after the ink dried on my son’s IEP.

1) No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin (I have the tiny little bitemarks on my body to prove it) but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.

2) If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.

3) If you can afford it, hire an advocate to check out your child’s school program. A fresh set of eyes may see areas that need to improve, or may reassure you that they are doing all they can for your son or daughter. It’s always good to know one in case you need an advocate at an IEP meeting. If you’ve already met you won’t be scrambling to find one.

4) If possible, volunteer at school functions or offer to be a class mom. This is a great way to get to know your child’s teacher and your school’s administrators better. You may also make friends with other parents too.

5) No matter how difficult your child can be, take any offer of babysitting you can and get out. You need a night off from autism once in a while. Even if it’s for a few hours, a break will help.

6) Now that your child’s program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.

7) Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.

8) Make those doctor appointments for yourself that you’ve been putting off. Just do it.

9) Get involved in an autism walk in your community. It is so powerful to meet so many families like (and unlike) yours. It will give you strength.

10) I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.

 

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August 31, 2015

Salad Days

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 1:57 pm by autismmommytherapist

Summer Fun 2007 032

You may not be convinced that this is a victory, so I’ll give you the back story. Once upon a time Justin ate three things, and they were all carbs. At one point he decided food was the devil and ate, well, nothing. This prompted his desperate pareents to call in a BCBA (Board Certified Behavior Analyst) specializing in food issues and autism to come to our home, and over the course of a very unpleasant week our son began to eat again.

How any child of my body did not like food is beyond me.

A few years after “foodgate” we came to a crossroads with Justin, and realized we had to put him on a heavy-duty medication to help him quell his aggression. It was not a decision we made lightly, but the medication helped immensely, enabling the core sweetness of my son to dominate his days. Of course with any medication there lies the potential for side effects, and this one kicked in almost right away. It seems the child who had once deemed food beneath him would now eat anything in sight, and of course over time he gained weight, mostly in his belly.

Every few months however he would have a growth spurt, and the belly gain would redistribute over his new lanky length, and all would be well in the kingdom. As of six months ago, this was no longer the case.

Hence, my quest to make my son eat salad.

I channeled all those fancy (expensive) techniques our BCBA had tried years ago with success, and at first nothing worked. I put lettuce near his plate, which he happily handed back to me, until the day he just let it sit there.

Then, I got bold.

I tried it on his plate and at first he took it off, but eventually he let it lie. I next brought a small piece of lettuce to his lips, trying different dressings, and got rejected every time.

Until the day I tried oil and a fine virgin Balsamic vinegar (only the best for my boy,) and he opened his mouth and ate it.

Made an initial grimace of dismay, but he ate it.

Soon, the kid who’d live on pretzels and popcorn if I let him was not only tolerating lettuce on his plate, was eating it eagerly. I then replaced his mac and cheese and other carbs with the green delight both at lunch and at dinner, and watched my son become a herbivore.

I’m telling you this accomplishment is right up there with him reading a book out loud to me.

He’s lost seven pounds, my boy. Justin is his lean, tough, son-of-his-father self. He’s been eating “bunny food” for months now, and I think this dietary change is here to stay.

For any of you reading this saying “that’s nice, but not my kid,” that’s exactly what I was thinking this spring as I watched his pants grow tight. Sometimes we autism parents just have to try things, even when they seem impossible.

For once, “never say never” reigned.


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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.

 

 

 

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

June 8, 2011

Alphabet Soup

Posted in My Take on Autism tagged , , , , , , , at 9:01 am by autismmommytherapist

It’s Friday afternoon, and I’m trying really, really hard to suppress my irritation as I drive, and losing the battle miserably. I’m on my way to Justin’s new neurological pediatrician with husband and boy in tow, unhappy because we went to the wrong office, and now we’ll be late for our appointment. Justin had his intake at their facility in north Jersey months ago, but somehow Jeff and I both missed that this practice has two offices in the central part of our state, and now I’m cursing under my breath that I didn’t check the website more thoroughly. I look at my car clock once again, and sigh. I placate myself that getting Justin in and out of the first office, for the most part, was easy. Except for the fact that for the first time ever my eldest was scared in an elevator, which prompted him to launch his seventy-pound frame into my arms in the hopes I’d carry him out of it, we’re still okay. I’ll need a chiropractor immediately, but we will be okay.

We’ve switched clinicians in part due to that waiting room incident, but also because my husband and I have come to believe that Justin has a dual diagnosis of ASD and OCD, and we’re hoping to have fresh eyes assess the situation. The secondary diagnosis of obsessive-compulsive disorder has been largely dismissed by Justin’s practitioners in the past, all of whom have thought that his rigid adherence to ritual is simply a facet of perseveration, a central tenet of autism. His father and I think it may be something more.

Last month we were fortunate to have the BCBA from Justin’s school in our residence for a few hours to assess his “maneuvers”, the rotation of DVDs/CDs/picture frames/shoes/plush toys that consumes him, and drives us crazy. This gifted woman with decades of experience with children on the spectrum validated our concerns, agreeing with us that some of his actions were a function of the repetitive aspects of a spectrum disorder, but the duration and severity of his focus indicated something else was amiss as well. Jeff and I subsequently figured it was worth the hell of finding a new doctor, and made the calls.

We pull into the parking lot of the hospital complex a mere three minutes late, and since at our first visit this woman seemed to be the paragon of compassion, I figure she’ll let our tardiness slide. We whisk Justin into the waiting room and check him in, and my husband makes sure the receptionist has our new insurance information while I attempt to keep Justin from barging in on a surgery. Our new neuroped takes us almost immediately, which further endears her to me, and I quickly tote goody bag, boy and purse into her well-lit and child-friendly examination room. Not only is there space for the four of us to sit, but there appear to be actual “autism-interesting” toys for Justin’s perusal as well, and once again I’m grateful we put him on that long waiting list last summer. I find myself almost giddy at how simple the entire affair has gone.

As I’ve said before, it doesn’t take much these days.

At our last visit we broached our concerns about the possibility of Justin’s sporting a second disorder, so we spend a good portion of our appointment time discussing how he’s doing at school (beautifully), his behavior at home (save for the constant house reorg, wonderful), and the numerous interventions we’ve attempted. My husband and I share with her the opinion of our fabulous BCBA-for-a-day, and reiterate we’re aware of the difficulty of culling out the perseverative aspects of his behaviors from those that might be purely of a compulsive nature.

Eventually, we stop talking, and listen.

Our learned practitioner concurs with us that dual diagnosis is difficult, and perhaps at the end of the day, immaterial. She says that from what she’s heard it is probable he has both disorders, and she’s willing to state it for the record. We discuss our “plan of attack”, which begins with increasing the dosage of his current medication, then perhaps exploring others if this intervention fails to mitigate the situation. We are given time-frames and parameters for using this approach, and she throws out the names of other potential medications. Our doctor gently informs us that things might get worse for a while before they get better, if they get better. We are reminded that none of this may work because he has autism, as well as OCD. Finally, our new physician gently tells us that it may take months to see a change, if any, because finding the right SSRI for OCD is a complicated task.

Hmm. Ambiguity in a treatment plan. It seems we’ve been here before.

As Justin begins to tire of the toys he initially found so fascinating, his father and I simultaneously wrap up our little tete-a-tete with Justin’s doctor, whom I’d recommend unequivocally to anyone (and that doesn’t happen often). We gather our stuff, thank her, and as Jeff heads to the exit with our boy, I tell him I’m going to make our next appointment in person, so I don’t have to remember to place the call next week. When I finish reconfiguring the chess pieces of our summer schedule I have an appointment secured, and head rapidly back to the exit so we can attempt our return home prior to rush hour.

In the distance I see Jeff struggling a bit with Justin’s safety harness, and I heighten my pace because I know how frustrating those buckles can be, and frankly, I’m just better at it. I know I have almost an entire minute alone to process this dual designation before I’m reunited once again with my family, and, I quickly assess my emotional state (I’ve become expert at this over the years). Unbidden as I walk, the tune from the “alphabet song” enters my head. There is a slight variation on a theme this time with the words “ABCD, ASD, HIJK my son has OCD” inserting itself into my fatigue-ridden brain.

No, I’m not sure where that came from.

I continue on to the car, and realize I’ve suspected this outcome for years, am far more interested in whether or not this knowledge can help alleviate some of his more troubling symptoms than whether or not he has a second “label”. So many recent studies seem to suggest that a variety of disorders comprise one big happy family, with ASD, OCD, ADD and others perhaps fighting for purchase on one or two chromosomes. Perhaps we’ll add more letters to his “alphabet soup” along the way, perhaps not. At the end of the day, what he has is irrelevant to who he is, and how much he’s loved.

And as I leave the parking lot after a brief skirmish with my spouse over which direction to turn (he was right, I know, it’s shocking), I remind myself that on the bad days, and yes, there still are bad days, that this absolute truth is what I need to remember most.

March 6, 2011

Something to Do

Posted in Fun Stuff tagged , , , , , , , at 11:05 am by autismmommytherapist

It’s the one millionth time we’ve driven home from the boardwalk arcade this winter, and the familiar cadence of Justin’s vowel sounds is once again caressing me like a warm, well-worn blanket. My boy is rocking out in the back seat to Yaz (he selected the CD, he has fabulous taste), and as we reach the crescendo to Midnight I glance back in the mirror so I can view his happy countenance. We’ve frequented this place so many times since the cold weather enveloped central Jersey that we’ve begun cycling through all the venues here, but one thing remains static- our culminating trip to the fudge shop.

Like I said, my boy has fabulous taste.

I have to admit I was bored today, encumbered by the habitual malaise that envelops me on the cusp of every new season. Easter is late this year, which means the rides at our local boardwalk won’t open until mid-April (thank God for Great Adventure, my new best friend), and I have completely run out of things to do with my moderately autistic child, on a Sunday afternoon, in February. Bowling is out, because all the lanes are packed around here on weekends after ten, and we’ve already sat through forty-one minutes of the latest Pixar creation, which means we’re now on our way to the one option left to us, which is home.

Crap. It’s only 2:15. Only five more hours to go.

It’s not that I don’t enjoy spending time with my eldest son, because I do. Even though he doesn’t talk (allowing Mommy some actual “quiet time” in the car, which on some days is a real bonus), we always manage to communicate our feelings to one another, are successfully reciprocal in our attempts to convey our needs. One of my (many) profound fears when Justin was initially diagnosed was that I’d never comprehend his desires, would remain unable to fulfill his requests. To date, for which I am eternally grateful, understanding his thought processes has not been an issue.

We just get each other.

But as much as I enjoy this time with him, value his hugs of delight when I tell him to go get his sneakers because we’re leaving the house, appreciate his exuberant kiss on my forehead as we make one last trip to the potty, it’s simply not enough. I want to have somewhere wonderful to take him as we cruise the abandoned streets of this now-slumbering beach town, would like to have an alternative to what awaits us at our house. On this frigid afternoon, with the sun slanting speckled stripes through the dirty windshield of my car, I’d prefer more variety at my fingertips than the computer games he’s pretty much memorized, and the DVDs we’ve all viewed a thousand times together. Instead, I’d like to offer him a really cool locale.

I’d like to transport him to my version of Disney.

“KimIsney”, as I’d prefer to trademark it, is a fantasy I’ve concocted during our many hours in the car together, particularly on weekends as I schlep him back and forth to his riding lessons. In my daydreams as we drive I am the beneficiary of great largesse from our state’s lottery system (to date I’ve won $500, so I’m not holding my breath), and subsequently find myself the happy recipient of a staggering sum of money. This grand prize of course enables me to put one child through college and med school (certainly a four-year-old can already discern his career path), provides the other with a safe place to reside, and affords me access to that amazing farm I’ve created in my mind. Jeff and I are able to pay off our oft-refinanced mortgage before we’re eighty, and I am able to better satisfy my clothing/restaurant/travel fetishes. We then treat our families and friends to “frivolous stuff”, and happily donate to our favorite charities and organizations (don’t worry POAC, you made the list).

And of course, there’s just gobs of money left over for fun.

In my mind’s eye, “KimIsney” encompasses as much land as both Kennedy compounds combined, and is about as well-protected. Within its interior is a snack-bar that not only distributes healthy snacks, which our picky eaters will actually consume, but serves gluten-free casein-free products for those children on the “autism diet” as well (notice I address the food issue first). There are game rooms where unlimited and repetitive play is not only allowed but considered the norm, some with the accoutrement of loud sounds and flashing lights, and several more restrained in deference to children with sensory requirements. An Olympic-sized pool provides lessons to those on the spectrum as yet unable to swim, with a one hundred per cent success rate upon completion.

Hey, it’s my fantasy. Indulge me.

Of course there are in residence two movie theaters, one “typical”, and one reminiscent of AMC’s autism showing (light on the previews, heavy on accepting all legal behaviors). Indoor rides are plentiful, both those with a gentle sway, and ones that accommodate my son’s need to torture his mother’s severely diminished equilibrium. Just for fun we’ll throw in a stable, where Justin can both practice the equestrian grooming arts, and trot his little heart out.

And the best part is, it’s so well-staffed, nobody ever has to wait for anything.

In my opinion, “KimIsney” would not be complete unless there was an accompanying parent component, and since it’s so fabulously staffed with Board Certified Behavior Analysts just gunning to donate some of their abundant free time, parents should have the opportunity to relax. An inviting wing of the compound will include a spa, light shopping (come on, I’m trying to throw in a bit of realism here), and of course a “tini” bar for those who come with a designated driver. Moms and Dads of children on the spectrum will have the opportunity to actually RELAX on a weekend, knowing their kids are safe within the sanctuary of the building, and remain in competent, well-trained hands.

There’s no way I’m donating this structure to the world unless my people can let loose a bit.

I’m just beginning to envision what stores I’ll have in residence when my dreams are abruptly interrupted by a smudge on our selected CD, a blip that forces me to change our music selection so the words “only you” are not forever emblazoned in my psyche. For once Justin is not annoyed at the derailment of his choice, and I quickly “throw the book” at him, and wait patiently as he thumbs through plastic receptacles for our future tunes. I half consider a brief stop at WaWa for the latest lottery pick, but since my chances of a meltdown from Justin when I prevent him from consuming every carb in sight are much greater than landing the motherload, I resist the temptation. For the occupants of this car, on this mid-afternoon, it appears there is no place like home.

And who knows, if I keep playing those numbers from Lost, maybe one day we’ll all win too.

February 17, 2011

Showtime

Posted in Life's Little Moments tagged , , , , at 11:57 am by autismmommytherapist

It’s showtime.

Justin and I have pulled into the parking lot of the closest movie theater to our home with an “autism showing”, and he is literally vibrating out of his seat with anticipation on this blustery Saturday morning. We’ve never frequented this venue before as this locale has just instituted AMC’s monthly tradition, and my son looked a little confused as we bypassed the mall mommy loves and swerved around to the theater instead. Once he saw the “divine Miss M” walking toward us all became clear however, and his litany of “eee sounds” accompanied his rhythmic rocking as he strained toward the front seat with delight. We quickly park as we are running a few minutes late, and we hurry toward the building as there are still tickets to acquire, a potty to visit, and most importantly to mommy, buttered popcorn to purchase before the prompt 10 AM showing.

If I have to sit through yet another animated movie, I’m getting something good out of it too.

AMC Theatres began incorporating this showing into their film schedule roughly a year ago, and I quickly found that the small changes they’ve instituted for families with autistic children have their benefits. Each month a kid’s film is unveiled on a Saturday morning at 10:00, which generally precludes a huge crowd due to its early showing. There are no previews (which since the chosen film is always a kid’s show, mommy likes), the lights are left dimly on, and unlike most everything else in my life, the event always starts on time. Best yet, it’s understood that kids are permitted to do almost anything in the theater, from throwing a tantrum to reciting every line from the show (or any movie for that matter) at high decibels, verbatim. For approximately an hour and a half, it is a safe zone for children with autism to just let loose and be who they really are.

Even if it’s loud, messy, and often highly irritating.

Ironically Justin’s behavior has generally been perfect in the movies, and until a year ago I took him to the “regular” showings, where he’d nurse his small, calorie-laden kernels for the better part of the show, sometimes sitting on my lap as I deftly maneuvered thin mints into my mouth, quickly followed by a Coke chaser. I actually enjoyed taking him as he always remained quiet during the show, stayed relatively calm, and gave me an excuse to consume candy without guilt. We never made it quite to the end of any story, but it was always close enough that I could anticipate the ending, and was never that upset about leaving early.

It doesn’t take much to make me happy.

Unfortunately, for unknown reasons I’d like revealed to me before I die, since the beginning of 2010 Justin has decided that no event we attend should last more than twenty-seven consecutive minutes, and what with the economy and all, it just seemed a little wasteful to exit the theater after half an hour. There was one Saturday morning where the projectionist mistakenly aired the previews, which meant that Justin announced our imminent departure approximately four minutes after the film had started, and I knew something had to change before I’d return. If I was going to spend the equivalent of a night at Applebee’s, I’d like to get my money’s worth.

Yes, here I go with those extravagant dreams again.

So we took a hiatus from Hollywood for a time (I’m sure they missed us), but now that (by God!) we’ve conquered bowling as a complete family, I am determined to add at least one more activity to our repertoire. Miss “M”, to my delight, has agreed to accompany us to the theater and work with us at home several times, using her behavioral techniques to shape Justin’s behavior. I’m hopeful we’ll eventually be able to work him up to sitting through an entire show, which will allow the four of us to share yet one more fun activity together, as well as afford us the luxury of arriving and departing in one vehicle.

As with everything ABA it’s imperative to come to the table prepared, and of course Miss “M” has already thought our new desired routine through, and has brought the necessary materials with her for the morning. Justin always seems to make his desire for departure known after he’s finished his snack, so Miss “M” has purchased Ziplock baggies with which to divvy up his popcorn, the act of which will be conducted out of his sight while I take him to the bathroom. She has created another one of her wonderful visual strips, complete with tiny laminated photos of his preferred film food, a random toilet, an attempt at capturing a shot of the movie itself, and last, a photo of my car. By some miracle I have remembered to bring the timer, so in theory, our goal of getting him to sit through an extra fifteen minutes of Gnomeo and Juliette should be successful.

In theory.

We finally make it into the theater with child, plastic bags of popcorn, and goodie bag in hand, and settle into great seats center stage, with nobody directly around us in case of a mild skirmish. The movie has just begun, and as I help Justin off with his coat Miss “M” assists me on the other side. He slowly slides down into his seat, already searching around for the brightly-colored bag that signifies movie food mecca. There are the faintest rumblings of a low-grade whine just beginning in his throat as Miss “M” quickly intervenes, extending the “magic velcro strip” to him, cluing him into his visual cues. He is mollified, and the whining (to my intense happiness), desists.

Our BCBA gives his pointer finger a workout as she prompts him to indicate the photo of the film with a quick jab, then she quickly reveals to him the timer with its sliver of bold red, signifying minutes not yet elapsed. She then counts to ten, prompts him lightly to remove the laminated square and hand it to her, after which he rapidly points to the portrait of the “yellow tower of crap” on his own. She hands him a generously-filled baggie which elicits a mild protest as it’s not in its original receptacle, but the allure of consuming carbs wins out over its unacceptable packaging, and he munches his prize contentedly. With the exception of the RUDEST FAMILY ON EARTH attempting unsuccessfully to block my son’s view by claiming the row in front of us twenty minutes into our gnomish tale (really lady, given the way you’re staring at the more vocal children in the theater I’m quite certain your kids are “normal”, can’t you at least get here ON TIME), everything runs smoothly.

Miss “M” has me run time checks, and after Justin eats enough baggies of popcorn which, had I consumed them, would have forced me to go up a dress size, it becomes clear that he has had enough. My boy stands up and politely hands me his empty juice box as well as the white bag which always signifies departure, and at Miss “M’s” prompting, I look down at my timepiece for one last check.

We’ve remained here happily for almost fifty minutes.

I admit, I’m almost giddy as we leave the establishment (like I said, it doesn’t take much these days), hopeful that we can eventually stretch this out, fashion this event into an outing for everyone. Miss “M” will meet us here next month as well, and in the interim will practice having Justin watch long stretches of DVDs with her at home, which given his penchant for watching the same thirty-second clip over and over again, will prove interesting. If anyone can pull this off it will be her, and I find myself smiling as I strap Justin into his complicated contraption in the backseat, and finalize plans with our BCBA. The feeling I’m experiencing has lain dormant for a while, tantalizingly near on some days, but only recently making its welcome presence known into my life once more. I savor the moment, mark it, remind myself to recall it later for Jeff as the two of us slowly make our way through the grid of cars to the remainder of our day, and the highway beyond.

The feeling is that elusive emotion, called hope.

February 2, 2011

Yes Virginia, There Might be a Santa Claus

Posted in My Take on Autism tagged , , , , , , at 11:28 am by autismmommytherapist

Back in 2004, when my husband, son and I were residents of the great state of Virginia, our eldest child Justin was diagnosed with Pervasive Developmental Disorder. He was only seventeen months old, which at that time was incredibly early to be identified, a fact which every professional we encountered told us was strongly in his favor. No one was suggesting he’d recover from autism, but the point that was brought home to me on every single one of our myriad doctor’s visits was this:  the only thing the multitude of autism professionals can agree upon is that early, and quality, intervention can make a huge difference in the progress these children make throughout their lifespan. I remember even through my despair being thrilled we had figured out his issues so soon in his young life, and being certain that help, indeed, would come. My mom had told me how comprehensive New Jersey’s therapeutic services were for the under three set, and I was certain, since I lived twenty minutes from the seat of our nation’s government, that Virginia would afford us similar assistance.

Soon, it became clear, I was dead wrong.

After our initial consultation with Virginia’s Early Intervention assessment team, we were told the sum total of therapeutic hours we would receive monthly would most likely number six, and if we pushed it, possibly eight. Occupational therapy services were offered, as were speech. Applied Behavioral Analysis hours were not considered, as Virginia’s Early Intervention program does not recognize a diagnosis of autism, even though said therapy addresses the core deficits of the disorder.

Although Fairfax County had made the magnanimous decision to accept children into their pre-school autism program the fall after they turned two, age-wise, Justin wasn’t yet eligible to enroll. Frankly, that meant any type of help he would receive would have to come from me. It meant making my temporary leave of absence from teaching permanent. We had to hire a Board Certified Behavior Analyst to come in twice a month and train me and our therapy team, all to the tune of $1200 monthly, a sum that did not include what we also paid our private therapists. The hours that Early Intervention offered us were a joke. I had a year left until Justin could enroll in school, into a program I was not certain would ultimately be able to meet his needs. My husband’s insurance covered none of our private BCBA’s inordinately expensive, yet necessary, instruction. We were existing on one salary.

In short, we were screwed.

Eventually, the lack of Early Intervention services, coupled with the fact that spending thirty hours a week trying to teach my own child how to sign for “ball” is insane, propelled us to relocate to New Jersey. Within weeks, we were granted almost twenty hours a week of a variety of therapies, including the Applied Behavioral Analysis hours so crucial to his development. I remained present for all of those hours until he began school in the fall, but throughout this period I always had another adult with whom to share the workload with Justin.

Honestly, during those months I felt like I was on vacation. A really good childless, island-hopping, pretty drink-profuse vacation.

Ironically, not too long after we moved back here, some amazing parental advocates convinced New Jersey to pass autism legislation, which has enabled many families to seek relief from their insurance companies. Services such as speech, occupational therapy, physical therapy and those gold-plated ABA hours are now being covered at least in part if you’re a subscriber to certain insurance policies. The legislation hasn’t fixed everything. There are still many families whose insurance providers render them ineligible to this legislation, many of whom are paying for those services anyway, emptying retirement funds and taking out second and third mortgages. Although we are quite fortunate not to fall into the latter category, we still cannot pull from New Jersey’s autism legislation trough. Even though we reside in the Garden State, my husband’s insurance coverage originates in Virginia, and as yet, comprehensive reform has not passed in Richmond.

Until, hopefully, today.

On January 27th, Virginia’s House Labor and Commerce Committees passed HB 2467. Virginia’s Senate Finance Committee is scheduled to hear their already passed version of the senate bill early this month. Today, on February 2, 2011, after many hours of diligent, behind-the-scenes work by politicians, parents, and advocates, Bill 2467 will finally grace the floor of the house as well. Even if this bill is signed into law I’m not certain it will help us financially, although it might assist us in mitigating the costs of Justin’s weekly speech therapy sessions. It will be months before the bill becomes law, and probably many more months before Jeff will be able to weave his way through the morass of his new insurance company’s rules. Ultimately, a pass in both the house and the senate may not benefit us at all.

But there is no doubt it will bring a sigh of relief to a multitude of families residing in what I consider to be my adopted state.

I have to share that I don’t ask the universe for much. I am, however, keeping all appendages crossed that this bill, this long-awaited piece of legislation, will pass. I’m hoping it becomes law, because children with autism are being diagnosed earlier and earlier, sometimes years before their public educational system is required to accommodate them. I’m eager for this legislation to pass in Virginia so that children can have access to services when they need them, not just when they’re deemed eligible for school. For once, I’m actually praying for the words on this bill to transform into law so that no other family will share my experience of those long, isolated fifteen months, endured just minutes from our nation’s capital.

I hope you will join me in thinking positive thoughts, so that for Virginia, there may indeed one day be a Santa Claus.

January 23, 2011

We Are Family

Posted in Life's Little Moments tagged , , , , at 11:10 am by autismmommytherapist

“Come on Justin, run!” Zachary yells to his lagging older brother, the one captivated by the swirling cadence of the electronic flashes darting across the screen of his favorite video machine. Justin and I rush to catch up with my youngest, his father, and our BCBA as they purchase one game of bowling and rent the requisite soft shoes for the outing, and we make it in time for Justin to grab his pair for himself. We are assigned a lane at one end of the alley, fortunately far away from the other early morning families and couples immersed in the cacophony of brightly colored orbs crashing into their intended targets. Justin seems exuberant, which is somewhat of a necessary prerequisite for this outing to be successful, has been grinning ear to ear since we pulled into the parking lot. So far, the outlook for the first collective McCafferty clan activity in an eternity, looks favorable.

In many respects over the last few years we’ve had separate families, me generally ushering Justin out of the house on weekends, his father staying behind to care for Zach. In part this has been due to Zach’s nap schedule, which I’ve followed religiously because he is the first of my offspring to actually take one without screaming about the concept for an entire hour prior. The second reason is that on weekend afternoons Justin is often pulling me toward the front door with his shoes in hand well before I’ve even dispensed with the lunch dishes. Since this event always coincided with Zach’s naptime, the situation hasn’t boded well for all of us to exit the house together. Couple that with the fact that my eldest wants to ditch every place we go in the same amount of time it takes me to get a manicure, and you can see why our trips have been so infrequent.

Today, I’m hoping that will change.

For me, this is the culmination of the real reason I’ve been taking Justin here every week to meet the divine Miss M. Sure, I like getting him out of the house on a weekday once in a while, and I’d prefer him to find a pastime other than video games and animation to engage his mind. I’m also excited he seems to like the bowling as much as the horseback riding because it’s something he can do when he’s old, when I’m no longer around to schlep him places. Hell, if required, his caregivers could even wheel him up to the lane and help him roll his ball off his lap if they had to. In theory, he could play this game for life.

I know. I’m supposed to be trying to live in the moment. Someday, I’ll get there.

All of the aforementioned reasons are valid, but the one that is really crucial to me, that keeps me up at night with all the other worries swirling around my overtired brain, is this:  as a family, we can’t continue to live every aspect of our lives on separate trajectories. At the moment, restaurants are out due to Zach’s GF/CF diet. A beach excursion lasts seventeen minutes before Justin is trudging up the sand to his fancy stroller, looking back over his shoulder to see if any of his family members is bright enough to realize he’s ready for his fudge fix. You already know what happens at the movies. Frankly, to my continual dismay, there just aren’t that many activities Justin enjoys. This, coupled with the four-year-age difference, has made getting all of us out into the community together about as simple as a task as convincing me not to open the second box of Girl Scout cookies in our freezer within a twenty-four hour time period.

Hell, I made it all the way through to cadets. I figure it will be my God-given right to eat them all.

Finally, the five of us make it to our assigned lane without either losing a child or a diaper bag, and Miss M carefully types Justin and Zachary’s names into the waiting blank screen. We’ve convinced my youngest to let his older brother go first, because his previous attempt at turn-taking here was not met with a great deal of enthusiasm, and I still want Justin to enjoy bowling even if Zach will conclude each frame for him. Thankfully, I have remembered to place the timer we’ve used before within easy reach in Justin’s large personal bag. Miss M has whipped out a lanyard with white beads, an item which looks like something I made at camp in 1977, but in reality is a device to help Justin understand how many frames he must bowl until the game is concluded. We’ve already used our “photo array”, which consists of a sentence strip with a variety of snapshots attached by Velcro, which in prior sessions has helped Justin understand the sequence of events in our afternoons. We are, as those devilish Girl Scouts say, prepared.

I am already tired.

We procure the lightest equipment we can find for the boys, and Justin, old pro that he is, heads without any prompting at all to his familiar yellow friend, holds it securely in his arms, and releases it down the silver ramp to its intended destiny. Zach cheers his brother on, and I watch in wonder as Justin sidles up to his father, grabs his hand, looks up into his face, then looks back at his ball hurtling down the slick lane. Without words, with only a simple gesture and glance, he just as clearly said, “Daddy, look what I can do”.

Even if we weren’t having fun, my son demonstrated joint attention with one of his parents. The trip was worth it for that moment alone.

The rest of the game proceeds without issues, Zach lustily crying “Yippee!” even if the bowling balls touch nothing but air, Justin joyously jumping up and down with each release. The boys were happy to be there. Miss M was thrilled with Justin’s compliance and eager enthusiasm not only for each of his turns, but for his brother’s as well. Jeff and I were happy to be anywhere but home.

We were having fun. Just like any other family.

I know, it sounds like the simplest of mornings, an adventure at a bowling alley, two boys playing a game together, and rooting each other on in their own respective ways. But this is just one more tiny example of the scales of happiness finally weighing in our favor, one more item on those round disks pushing us over the edge to contentment. Justin’s crush. Zachary’s role play. My eldest gently touching his brother’s face in the bathtub as his younger sibling tries to tickle him. Justin possessing both the motivation, and the ability to execute, sharing joy with his father.

Simple little things, yes. And to our family, miracles all the same.

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