April 2, 2014

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:39 am by autismmommytherapist

Disney and Halloween 2013 192

Today is April 2nd, otherwise known as the seventh World Autism Awareness Day.  There will be people “lighting it up blue,” people boycotting Autism Speaks by not “lighting it up blue,” and many beautifully crafted posts on blogs and websites talking about autism, autism awareness, and yes, autism celebration.

In my house, at least in the early hours of the morning with my two autistic boys, it will be Wednesday.

Eventually, my sons’ buses will come to carry them away to their beloved schools and I will have time to consume my own beloved Coke 90 and sugar-free chocolate (I know, but every little bit helps, right?).  I will have a few minutes to contemplate what I like to call the “state of autism affairs” worldwide, and equally importantly, the “state of autism affairs” in my own home, and what I’ll be writing about.  In truth, every year I like to have a theme for my posts in April.  Last year I celebrated by writing about exceptional autism advocates in my community. This year, as I approach the ten year anniversary of my eldest son’s diagnosis, I’d like to take a different approach.

I’m going to celebrate the hell out of my kids’ accomplishments.  And in doing so, I hope to inspire and offer hope to anyone just coming to terms with their child’s autism spectrum diagnosis.

Ten years ago this fall a kindly developmental pediatrician gave Justin the diagnosis of Pervasive Developmental Disorder (PDD), a label I knew in my soul was just the precursor to the autism diagnosis I was sure would come.  Four years later I sat in my living room as my Early Intervention provider told me my youngest son Zachary, following a series of back-to-back illnesses, had lost six months to a year in all areas of developmental growth in a matter of weeks.

The latter reckoning was particularly difficult to deal with as Zach had appeared to develop typically for eighteen months, plus Justin was going through a particularly challenging time as well.  I well remember sitting on my couch in my living room, wondering how the hell I was going to continue a hellish attempt at potty training my eldest child while simultaneously trying to help my youngest retrieve the glorious words he’d lost, not to mention what appeared to be the very light in his soul.  I recall thinking it was all too much, that my dream of how my family would be was irrevocably shattered.

The dream, by the way, was simply that my boys would be safe, productive, and happy.

On this blog I will never promise anyone their lives and those of their autistic children will definitely get better, as I don’t know all of my readers’ particular situations, and honestly, better is a relative term.

I will say this however.

I have two children with autism.  One is severely affected, and will require life-time care.  One is considered on the milder end of the spectrum, and one day may well be president.  In their early years both suffered, truly suffered from autism.

Now, for the most part, I can honestly say they don’t.

We still go through difficult periods with each child.  At times Justin can be caught in a vicious OCD cycle, difficult to reach, almost impossible to placate.  His long-buried aggressive tendencies can rear their ugly head despite the behavioral techniques we try, rendering our family life challenging at best.  Zach goes through periods where he truly struggles to focus both in school and out, and his impulsivity can stretch us thin. I’m not saying it’s a walk in the park here by any means.

Again, I will never promise any of my readers things will get better, although I fervently hope all families can reach the sanctuary of acceptance, and yes, at times celebration, that this family has.

But truly, after years of therapy, acceptance, maturation, and simply love, both of my boys are predominantly happy.  Both thrive even working through, and sometimes because of, the lens of their respective diagnoses.

Both, in their own respective ways, tell me frequently that they love their lives.

And to me my friends, that is everything.

 

 

 

 

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.

June 9, 2010

Talk Amongst Yourselves

Posted in My Take on Autism tagged , , , , , , , , , , at 9:14 am by autismmommytherapist

My oldest son is now seven.  He has never spoken a completely intelligible word.

There have been approximations, attempts at articulation that his father, mother, speech therapists, and sometimes his little brother have understood. “Mmm” for mama, “heb” for help, “ob” for open have all graced our presence, particularly in the last six months. His apraxia, the disconnect between his brain and the muscles required for speech, is strong with him. But for the first time in his life I am watching him strain for vocalizations, feel his fingers on my mouth and his eyes on my face as he struggles to imitate on demand, but never to initiate on his own. It is both thrilling and heartbreaking to see him try, to comprehend that he actually wants to talk now, but perhaps will never be able to coerce the sounds he makes into the cohesive whole of an entire word. I imagine he is frustrated by this inability to converse. I am not even certain of that.

Justin was diagnosed with pervasive developmental disorder at the tender age of seventeen months, which was particularly early back in 2004. His father, grandmother, therapists and I quickly immersed him in sign language in order to offer him a way to get his needs met without a tantrum, and to afford him the opportunity to more fully connect with the world. We utilized this approach for the better part of a year, contriving hundreds of trials daily in which we cajoled him into asking for a preferred toy, food item, or book to be read. Sign language was his chosen methodology of communication for well over a year, but despite his obvious intelligence, after fifteen months he had really only mastered half a dozen signs.

When we moved to New Jersey we were fortunate enough to receive the services of the Douglass Developmental Disabilities Center, and the excellent practitioners of my newly formed “team Justin” quickly indicated that sign wasn’t working for my son. They believed we should try PECS, a method of language using pictures that is far more visual in its interpretation, and without the prerequisite of good motor imitation skills integral for success in sign. I initially rejected the suggestion, because studies at the time had indicated that more children who signed progressed into vocal speech than children who employed other methodologies of communication. I resisted heartily, and almost made a terrible mistake because I forgot to utilize one of my strengths- to look at the big picture through the lens of an educator, not a mother.

For years in the classroom my co-workers and I had encouraged different modalities of learning, whether the child came with an IEP or a 504 plan, or just required a diverse way in which to acquire knowledge. It was not unusual for teachers at my school to encourage a student to memorize information for a test in the form of a song, to permit them to walk around the classroom to facilitate knowledge acquisition, or even to allow them to respond orally to a quiz if the written word was too daunting to them. We weren’t heroes. It was just part of our job.

I forgot this big picture approach with Justin for a time, because I was too emotionally invested in what I wanted for him, which was the ability to form the spoken word, to convey thoughts, desires, and initiate conversation. I almost forgot to take into account his strengths, which were technology and visual acuity, and acknowledge his weaknesses, imitation and gross motor coordination, both prerequisites for sign language. I also almost forgot that just because I want him to talk, doesn’t mean he will be able to do so. I can provide every opportunity for him, entrench him in multiple chances daily for understandable utterances, but in the end, whether or not he speaks is up to his ability and his motivation, as are so many other skills I’d like him to attain. I forgot this cardinal rule of teaching, and almost squandered the opportunity for even the most rudimentary communication skills for my son.

Justin soon mastered the PECS program and has since moved on to a more complicated augmentative device, the Springboard, which he uses in conjunction with attempted vocalizations both to request desired items, and to respond in academic situations. He is starting to type simple words on the computer now, employing a simpler version of the “hunt and peck” technique my husband still utilizes to this day. Justin has a typing repertoire of almost twenty words now, with new ones in acquisition daily. It is exciting to watch, and thrilling to witness his pride when the printer spits out his accomplishments so that he has tangible contact with his words.

I temper this success however, as I do his some of his other accomplishments, because I must remind myself that language and communication are two different entities, and the former does not necessarily blossom into actual conversation. It took a long time for me to understand that just because my autistic child was bright and might someday have language, he might not have communication. There are a number of children on the spectrum who are pros at scripted monologues, veritable geniuses at enumerating the myriad characters of Disneyworld, the Island of Sodor, or the Wiggles. They have vocabulary, excellent articulation, perfect diction. They speak. They are not communicating in any utilitarian fashion.

I remind myself of this as I watch him struggle, view his attempts to place his tongue in the correct position for a coveted consonant, or elongate his lips for an elusive vowel. I encourage myself to think “out of the box” about language in general, because this particular child may just not need to connect with people the way that his mother does. His rudimentary successes may lead to more meaningful dialogue one day, or they may not.

What matters most is that he does get his needs met, and no longer feels it necessary to cry, pinch, or stomp his requirements to get them realized. He connects. He is happy. And while I know I will always wish for the trappings of conventional speech, even the mere desire of it from him, perhaps in the end we convey more to one another in our increasingly elongated eye contact than we ever would have with the spoken word.

And I can live with that.