June 18, 2010

Back in the Saddle

Posted in My Take on Autism tagged , , , , , at 8:49 am by autismmommytherapist

I fell off of a horse yesterday. Not a proverbial one, nor am I making an oblique reference to a wagon, for those of you so concerned about my frequent mentions of alcohol. No, I took a tumble from a completely stationary animal embedded firmly into the weathered wood at the Point Pleasant Beach carousel. You might be pondering why a forty-three-year-old woman was indeed engaging her equestrian predilections in the first place, and I respond that I was doing so because my youngest son asked me to race him on said carousel, and I am so grateful he can ask me anything at all that I generally try to accommodate his requests. I am certain he will develop into a lovely child.

The ride itself was wonderful, and of course, I let Zachary win. It was the dismount that did me in, my taking for granted that my flip-flops would afford me the same purchase of the stirrups that my sneakers usually did. When the ride began to slow to its inevitable end, as rides always do, I gracefully swung my leg over the saddle, and artlessly ended up on my ass. After I hiked my beach dress down over my neither-toned-nor-tanned-enough thighs and retrieved my errant ticket book from the concerned dad who’d had it flung at his face, I had time for three successive thoughts. Oh goody, I don’t think I broke a body part, either integral or extraneous; at least Zach was still strapped in on his horse, and most importantly, my fall didn’t interrupt his flirtations with the three-year-old girl next to him; and finally, I don’t give a damn if anyone saw my awkward tumble, but why did that dad have to be so cute?

This is not my first brush with death at our local boardwalk. Last season I faced my own mortality with Justin, walking backwards amongst the crowds trying desperately to eek out twelve more consecutive seconds of adult conversation after a chance encounter with one of my dearest friends. This profoundly idiotic choice resulted in a near concussive event as my skull eventually connected with the boardwalk’s prominently placed railroad crossing sign. After uttering two expletives in rapid succession (that’s a good day for me) my son proceeded to yank my t-shirt down to my waist so he could kiss me multiple times to “make it better”, and since I had one hand clamped on Justin’s wrist I had my own Sophie’s Choice to consider:  cover the boobs, or continue to search for blood and assess my chances for intracranial bleeding. I chose the boobs. I’ve watched enough Grey’s Anatomy to know if it’s a subdural hematoma, I’m doomed anyway. Especially if it’s sweeps.

For the longest time my fear of impending mis-steps resulting from bad choices regarding the care, education, or medical approaches we utilized with our oldest son often left me in a paralyzed state. In the early days after Justin’s diagnosis I was often overwhelmed by the plethora of options the Internet held before me. Should his main therapeutic intervention be Applied Behavioral Analysis, or Floortime?  Should I try the GF/CF diet, or not attempt to wean him off of the three food items he currently ingested without my using the football hold on him?  Do we continue to vaccinate him, or hold off on further injections in fear that in the case of this child, the small but vocal minority is correct that immunizations trigger autism?  Is it okay to secure that babysitter for our irascible toddler even if we’re not certain both parties will still be alive upon our return from Applebee’s?

Back then, and for years to come, choices (and sometimes, the lack thereof) ruled my days. I was so sure that if I picked badly for Justin, selected the wrong school for him, was unable to acquire the perfect autism consultant for our home program, or didn’t adhere to the equivalent of the Behavioral Ten Commandments EVERY SINGLE TIME that I would be damning my child to autistic hell. I put a great deal of pressure on myself to get it all right, to leave no stone, speck, or microscopic organism unturned. I attempted motherhood perfection. I was relentless.

Over time, maybe six months into our family’s permanent autism detour, I began to realize my yearning for perfection in the treatment of this child was affecting my marriage, my health, my ability to sleep for more than three consecutive hours at a time, and my relationship with my child. Eventually I figured out that my hopes of achieving a type of treatment nirvana were self-indulgent, a way for me to feel more control of a situation in which I did not, nor do not, have a great modicum of control. The best I could do for Justin was envelop him in hours of quality therapy, immerse him in consistency, and wrap it all up with a vast quantity of love. The best thing I could do for me was not obsess over every decision or choice I made for him. I came to realize that at every crossroads I should listen to my gut, choose, and move on. It took some time, but I finally understood that to be the best mom for Justin, I had to first tend to my tattered soul, and be gentle with myself and my decisions. This was the most important choice I could make both for him, and for myself.

I continue to struggle with what sometimes appears to me as the overwhelming finality of some of my options, but I’ve discovered at least with the second child I’ve made some progress. Perhaps it’s because he’s found his home on the much milder side of the vast autism spectrum, or perhaps it’s because with the return of his much longed-for language he is fully a participant (and quite a bossy one at that) in many of our decision-making ventures. A number of my friends would take care to point out to me that my calm demeanor reflects in large part his less-that-human status of second child, but I think they’re just suffering from first child envy. It’s true. We do get all the good stuff.

I will continue to work on reducing the angst of my choices with Justin, and anticipate I will be fully evolved with it by the time he’s fifty. Of course I’ll be dead by then, but I’m working on overseeing things from beyond the grave, and I figure I have about forty years to bring that dream to fruition. It’s good to have goals.

And for any parent out there new to autism in its many shapes and forms, please take a deep breath, and remember to let it out. Your child needs you whole, and no matter how involved they are with the disorder, they are still whole, still yours, too. In the days and months to come you will be stretched past any limits you once thought you had. Don’t forget to reign in once in a while, set your own limits as to what you can do, and care for yourself also.

Try, as much as you can, to be well.

May 27, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , , , at 9:06 am by autismmommytherapist

Today’s guest blogger is Mary Lachenauer-Craig, welcome!

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.

Hi and Welcome to Autism!

When my son was diagnosed with Regressive Autism; I really felt as though there should have been somebody like Julie McCoy from the Love Boat to usher us into this new community and let us know what activities we had scheduled.  Developmental Intervention party of 2, ABA party of 5; your tables are ready!!!

Little did I know what I really had ahead of me when the insensitive evaluator said as her parting comment, “well at least now he’ll qualify for the Handicapped Preschool”.  Initially, I felt like I wanted to run out into our quiet street and yell that’s the best you’ve got for me?  You’re the “expert” and that’s all you have to offer. Thankfully since that day our family of 4 has been sent numerous angels to help us through our journey on this crazy cruise. I won’t lie to you either some days it feels more like we’re on that fateful 3 hour tour from Gilligan’s Island fame.

My precious Angel’s name is Will. Will turned 5 this May and has been diagnosed for almost three years now. William arrived on Cinco De Mayo with great expectations from his sister who turned 18 months old that same day. He was a chubby faced, snuggly baby whose blond hair shone like a halo as he camped at my breast. He weighed 10 pounds, measured 22″ long and had 2 teeth. Yes, teeth!!! Our family was complete and now my husband and I were living the American Dream.  One girl and now a boy too!  Or so we thought until one cold day in December of 2006!!!

Will hit his milestones and was developing normally according to all the scales & the books.  He was a loving, social, happy boy and each time he smiled up into our faces we knew we were blessed. When he was 18 months old he got sick for the first time ever with an ear infection. It took two rounds of antibiotics to clear it up. When we went back to the Pediatrician they said let’s get him caught up on some of his shots since his ear is all clear.  I had been going slow with vaccinations for both kids since learning of other kids who were vaccination injured. I had told them I didn’t want an MMR until he was 3. It was on the front of his chart in RED!!!!!!!!!

Megan (our daughter) was running through the office after escaping from the exam room.  I was trying to catch her while the nurse and Pediatrician gave William an MMR shot because they had it in stock. At first, I was angry that they gave him the shot while I was chasing Megan around the office. Then I was furious!!!!!!!!!!!!

I remember hearing his cry from out in the waiting room & knowing in my gut that it wasn’t the same kind of distress cry. Moms need to listen to their instincts and not let other people make them feel silly for it. He screamed and cried all the way home and on and off for hours that whole night. When I called the Pediatrician she told me he needed some Tylenol and would be fine. The next day this other child was in William’s place and that child lost all of his words he’d already learned. I’ll never forget that day or the sinking feeling in the pit of my stomach when I lifted my angel out of his bed.

The realization that my angel was gone slowly sunk in as he didn’t turn to us with his chubby cheeked smile when we said his name or how he stopped running to the door to see who was there.  I still remember how lonely and afraid I felt crying softly in my bed some mornings while I heard him bouncing around but no longer attempting to awake his Sister as he had so many other mornings.  He had a blank stare when we took him out of his crib.  It was as if somebody had turned out his bright light. That same Pediatrician insisted William was just being eclipsed by his talkative older sister and I shouldn’t worry. Others insisted he was a late talker (he had already been talking) and countless others tried to ease my mommy guilt by reassuring me he was okay and his ears needed to be checked after that bad ear infection. I had his ears checked and they were fine.  Thank goodness for my mother, an RN who believes in mother’s intuition and our neighbor who is an Occupational Therapist; they encouraged me to follow my heart and “mommy gut”.

Will lost interest in many of the things he’d loved previously and didn’t seem to know how to play with his friends anymore. He was a boy that weighed 10 pounds at birth and always had a very healthy appetite until he was vaccination injured. He hardly eats anything now and can’t even have fun stuff like ice cream anymore because it makes his symptoms worse. We never, ever returned to that Pediatrician & some days I wish I could bump into her out in the store as people are telling me I’m a bad parent because my child is overwhelmed by all the noise & lights and not behaving appropriately in their opinions.

I went against that Pediatrician’s suggestions and called Early Intervention. I put William into a research study just in case so I could circumvent the 18 month-long waiting list at the Developmental Pediatrician. We got the diagnosis of Regressive Autism. That Developmental Pediatrician served me the blow of my lifetime when she told me my son had one of the worst cases of Regressive Autism she’d ever seen and so it began.

When you learn of the impending birth of a new baby as parents we all have such dreams for them.  A mom dreams of seeing that baby’s sweet face and hearing their sweet coos.  A dad dreams of games of catch, catching that first fish, building a tree house, fixing up a first car when he hears the words, “it’s a boy!”  Sports, trips, school activities, colleges, weddings and Grandchildren of your own that you dream of for that child you’ve yet to meet.  Then they lay that beautiful boy so full of promise in your arms you can almost feel the hopes of his future.  Suddenly when you hear Autism all of those dreams shatter all around you and it’s just you and your family left to pick up the pieces & figure out if any of its possible for them anymore.

For me, Autism translates into not knowing for sure if I’ll ever hear my beautiful Angel say his own full name or even I love you mommy.

Welcome Aboard….we’ve been expecting you!

“I can be changed by what happens to me. But I refuse to be reduced by it.” Maya Angelou

Parents of Autistic Children

http://www.poac.net/index.asp

http://illuminatedecorateandfascinate.blogspot.com/

March 24, 2010

Kumbaya

Posted in My Take on Autism tagged , , , , , at 10:27 am by autismmommytherapist

Bitch, bitch, bitch.

No, I’m not referring to myself, although on many days and many occasions, this title is apt. Instead, I’m referring to a number of ongoing discussions within the autism community. There is a lot of kvetching going on in regards to different subsets within our little island of misfit toys, and I think it’s time we all played nicely with one another. I will begin by offering my personal, giant Kumbaya and best hug to anyone dealing with autism in their lives, no matter what you believe.

We have to start somewhere.

There are parents who feel that biomedical/alternative treatments have been instrumental in helping their children, and there are those who have selected a more traditional approach in trying to eradicate the symptoms of autism. Some parents believe we are doing our children a disservice by not embracing them entirely as they are, while others would go to great lengths to help their progeny shed their autism label. There are groups within the autism community who feel vaccines and/or environmental factors are to blame for their child’s disorder. Others are certain their family trees are replete with deeply organized, relatively anti-social individuals who were not stingy in passing down their DNA.

We’re all entitled to our beliefs, but the problem seems to lie both in how firmly entrenched we are within them, and our need to foist these beliefs on other families. Some of the discourse can get really nasty, reminiscent of some of the mean notes I saw passed in high school (yes, I’m old enough to have passed notes in high school). In my opinion, not all of these issues are so clearly defined, so patently black and white. There is room for enlightened discussion if we all just listen to one another.

Shades of gray my people, shades of gray.

I’ve checked out blogs written by mothers and fathers whose kids have other disabilities, such as Downs’ Syndrome, cerebral palsy, and Tourette syndrome. I am not discovering the vitriol, just sensing the support. Theirs seems to be a kinder, gentler world.

I know we all need to vent, and some of us are writing simply because we’re stuck in our homes. Clearly we have a lot to say, and much of it, despite its antagonistic nature, is thoughtful and illuminating. We parents of autistic children are, after all, not a dumb people.

There’s even a study to prove it.

This is all I’m saying. Many of us have embraced the theory of Applied Behavioral Analysis, whereby if we don’t like a behavior, we ignore it and engage in something else. Perhaps we can put a little more theory into practice. Maybe every minute we spend reprimanding each other we could spend a commensurate minute using a connection to get an adult with autism a job, sacrifice a few seconds to petition our state’s congressmen about insurance reform, or try to harass our director of special education to make certain our kids aren’t being instructed in classrooms the size of my walk-in closet.

Just think about it.

March 14, 2010

Wish Upon a Star

Posted in AMT's Faves, If You Need a Good Laugh tagged , , at 7:17 pm by autismmommytherapist

There are several reasons I decided to write a book about my autistic child (and later, due to overachieving, both of my autistic children), and to be perfectly honest, most of them are not altruistic. Sure, I want to help raise awareness for autism, and perhaps impart some gems of wisdom to newbie autistic families. Also, if I can harass everyone I’ve met since grammar school (I’m in my forties, that is a formidable amount of people now) into buying my book, the organizations I’m hoping to donate a portion of my profits to might actually be able to buy the good post-its. You know, the ones with the pretty colors and the sticky stuff that actually works.

But if I’m perfectly honest with myself, the main reason I wanted to pen my manuscript is that with the advent of the second child, I began to forget everything. I don’t mean just the memories of the extravagant fun of teaching my own autistic toddler for over a year. I mean important things, like recalling each child’s real name at least 50% of the time, or remembering to shave my legs seasonally. I figured if I exercised my brain (in theory) on a daily basis, some of my ability to recall would return.

For the most part, I was wrong.

And that’s okay, because I got something else out of trying to sit down every day and pretend I wasn’t completely intimidated by that cruel, blinking cursor. I was afforded the opportunity to really examine all factions of the autism community, and to truly take a look at what society at large was focusing on when it came to our children. I realized when you ask the average person on the street what they know about the disorder, you generally hear these responses.

Vaccines. Diet. Recovery. Jenny McCarthy. Not necessarily in that order.

Ms. McCarthy is regarded as a controversial figure within our community. Certain groups view her as an “autism angel” for bringing attention to the theory of a vaccine-autism connection, as well as biomedical interventions and recovered kids. Some elements believe her theories flout scientific evidence to the contrary. Frankly, I think a few of those groups are just pissed that she actually got the media to cover her story. For the most part I couldn’t care less about all of it. I am not a hater.

I will say this however. While it’s great that autism is practically a household word now, like vampires or health care reform, the truth is this:  most of the attention is still focused on kids with supposed vaccine injuries, and those who shed their diagnosis, or at least eventually “pass” for normal. Although I’m pleased our community has become the “popular” disability, I’m afraid we’re not focusing enough on issues that pertain to the vast majority of the autistic population.

Perhaps 10-20% of people with autism fully integrate into society, and there still is no evidence accepted by mainstream science that a subgroup(s) of children exists who succumbed to the disorder due to inoculation. By the way, just so you don’t think I’m just another embittered parent of a disabled child who won’t be attending an Ivy in 2021, I do have another child at home with autism who was singing Christmas carols less than a year after he regressed. There is a good chance at least one of my progeny won’t be my permanent roommate.

Fortunately, there has been a steady rise in stories lately regarding unrecovered children with autism, and the blogosphere is now replete with posts pertaining to other issues. Perhaps I’m selfish, but I think we could continue to ramp it up a bit and pay even more attention to some of the problems that continue to plague my oldest son, and about 80% of the autism population at large. I hope we can focus on the little things, like the fact that the medical profession is finally beginning to identify children at-risk for autism as early as six months of age, but in many of the states in this country there are completely inadequate early intervention programs to tide a child over until he can enter a school program at three. It would be exceedingly special if more attention could be brought to public school districts who are actually instructing their autistic students correctly without requiring parents to take out that fifth mortgage to supply their legal aid habit, so that perhaps other districts will emulate them.

I also think it would be super fun if we could all concentrate more often on appropriate jobs for autistic adults who can handle employment, and insurance reform in every state so that parents aren’t eating Kibble by the time their autistic kids are potty-trained. Finally, it would be nice to see some extra attention paid to the housing issue, so that someday when my son is an adult he might be able to live in a safe place while I’m still savvy enough to recognize my own dementia. I have extravagant dreams.

I’ve been told, bluntly, that bylines about unrecovered children with autism are too sad for public consumption in a way that the vaccine/recovery story is not. Apparently pieces about children requiring lifetime care are just not sexy enough. What I’ve finally realized in our Octomom, Real Housewives-obsessed country is that in order to bring attention to these issues and get as much air-time as the vaccine/recovery community, we need our own celebrity.

That’s why I’m calling for Clooney.

Lest you think I have no claim to him JUST because he’s not on my list of previously stalked celebrities, I’ll have you know I have, for the most part, always been faithful to him. Sure, there have been minor dalliances in my fantasies with John Cusack and Bradley Whitford from the West Wing (you KNOW you think he’s adorable too), but for the most part, he has been my stalwart companion in REM sleep. In my dreams I’m even respectful of his lifestyle choices. There are no wedding rings, no sons bearing fabulous hair and chins. George Clooney is like that fantastic new ride at the amusement park. He’s thrilling and might make you a bit disoriented at times, but ultimately the ride is over, and it’s time to get off. There are no souvenirs.

I know he’s really busy with his charity work in Darfur, and I’m not saying he isn’t needed there. Even on my worst days with Justin and Zachary, and there have been more that a few, I’m not equating my situation with what they’re experiencing. We always manage to eat here, and to date still can afford housing. I’m not that much of a narcissist.

I do think it would be lovely if Clooney had a domestic charity too, and since autism and Africa both start with “a”, I think it’s a natural pairing. Let’s bring the sexy back to autism. Our children deserve the best, don’t you think?