January 6, 2011

Teach Your Children Well

Posted in Life's Little Moments tagged , , , at 9:01 pm by autismmommytherapist

My oldest son Justin has had a home program since he was eighteen months old. When we resided in Virginia I was his main therapist six or more hours a day for over a year, until we skipped town and moved to New Jersey where I gleefully passed the mantle on to some wonderfully skilled women from the Douglass Disabilities Center. It was a tough gig working with my own autistic toddler for those fifteen months, one which more often than not alternately baffled and frustrated me. Ultimately it was a job for which I was eternally thankful I could afford to stay home and perform, and one for which I was grateful I had the prerequisite skills to successfully learn the nuances of an ABA program. My limits were certainly stretched, I’m certain my child’s were too (as well as his patience with me), and at times, I wondered if our relationship would ever be the same. I was never more thrilled than the day I learned if we relocated, I’d have up to twenty hours of help a week, mostly at the state’s expense, to tide Justin over until the school system took him at the age of three.

Frankly, it was almost better than my wedding day AND the birth of my children.

Since we moved back almost five years ago we’ve had a number of therapists grace our doorstep, and two have decided to stick with Justin and his crazy mama and are employed with us to this day. Despite the fact that one recently had the temerity to start her own family (really, isn’t tutoring my son ENOUGH for you?), he’s had a lovely little program going for him three days a week since he started school. Since I wanted him to actually like me for most of his life I’ve gradually removed myself from his formal table instruction, allowing these wonderful women to take over most of his lessons in spelling, math (woohoo!), and reading comprehension, with a number of other targets from that ABA bible, the ABLLS, thrown in. This decision has permitted me to focus more on life skills and fostering his independence, as well as giving me both the opportunity to breathe and have time to use the bathroom again.

Yes, I’m easily pleased.

When we figured out recently we wouldn’t be able to have his one therapist return for several months after the birth of her child due to the Family Leave Act (damn federal laws), I decided I’d jump in again until she came back. Since it’s been a while I figured I’d be rusty, so I made sure to observe the remaining tutor so I’d have a shot at knowing what the hell they were doing these past few years. I generally don’t watch the sessions because Justin then spends most of his time trying to escape to me, but this time I gave Jacey the good toys, I was able to see the programs, and it was as if I didn’t exist.

For once, that last part made me happy.

So, this past Sunday, I relegated Jeff and Zachary to the second floor while I hunkered down with Justin at our work table, and flexed that academic muscle once again. I too had the good toys (and the good snacks, AND the good beverages), because I want to keep his enthusiasm up since I’ll be doing this for a while, and it wasn’t all that long ago that my reward for pushing him too hard was often his ridiculously sharp set of fingernails. I’m a bit (just a wee bit) wiser than I was six years ago.

I walked him over to the workspace, giving him just a glimpse of his new fave, stick pretzels, and those musical toys I’ve had sequestered in the nether regions of the garage for the last three months. I sat him down, arranged our goodies, then took the seat adjacent to him. Once he stopped making a grab for his salty future prize he sat back in his chair, and looked around him for a “real” teacher. When he stopped searching it finally hit him that his therapist du jour was me, and he broke out into a grin that consumed his entire face. He then presented his cheek to me for one of his favorite pastimes, the rapid-fire-ten-times-in-a-row cheek kiss.

Honestly, his enthusiasm was so adorable if he hadn’t been my own child, I would have had to leave the room to retch.

I didn’t push things during our first session together since he was in diapers, just hit the big target goals and made sure to intersperse some mastered skills so he wouldn’t be frustrated. I made certain he knew I was proud of him for demonstrating that a cow has legs, and that we sleep in a bed, as we wended our way through identifying feature, function and class. I chose to conclude after half-an-hour on a positive note, praising him for answering questions from his reading material correctly on his communicative device. He rejoiced in being reunited with his abandoned toys, but worked just as often for affection as he did for animated animals, food and drink.

After we wrapped things up and I released him with one more physical gesture of love, I sat for a moment before cleaning up my mess and remembered what those early days teaching him had been like. When I first began instructing him he could barely walk, would never stay still for more than three consecutive seconds, and spent a good portion of his day wailing at some terrible fate I was never able to discern. I recalled I’d had to strap him into a seat with a tray that kept him immobile, and his protests at being restricted I was certain could be heard throughout VA, DC, and MD. It took weeks before he seemed to tolerate the work-reward rhythm, and many more weeks before he learned to enjoy it.

Those were very, very, very long weeks.

But of course, it was all worth it, every moment of angst, every hour I spent in my basement instead of shopping or reading People. I wish someone could have told me how much better things would get in years to come, that I’d one day parent a mostly compliant child, one who is eager to learn, one who is, to my amazement and joy, predominantly happy. I could really have used that time traveler, back in the day.

And for any of you struggling with your own children, whether they’ve just been diagnosed, or you’re simply enduring a tough time, I’ll say this. I won’t promise you it will end. I won’t even promise you it will get better. I used to hate when people made those positive-thinking predictions to me, some of which have come true, and many of which haven’t. Frankly, until someone’s actually able to channel the Psychic Friends, the truth is nobody can promise any certain progress, of any particular child, to any family.

But I will tell you this. Try. Try as hard as you can, just a little longer, a little more intensely every moment that you’re able. I would never have believed we’d be in this place six years ago, hell, would never have allowed myself to think we’d be even halfway to where we are. Some days, when I see Justin’s smiling face and remember that former countenance of continual woe, I’m still in disbelief.

And as you fight that good fight, I wish you the best.

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.