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Twelve years ago this month I walked into our pediatrician\u2019s office with my then seventeen-month-old son in tow hoping for a prescription for reflux; I walked out shaking, crushed by our doctor\u2019s callousness, and clutching four misstapled and badly copied articles about autism in my trembling hands. Our pediatrician never uttered the word himself, just told me to call a developmental pediatrician, thrust some numbers on a stickie into my hand, and left the room.<\/p>\n
He wasn\u2019t our pediatrician much longer.<\/p>\n
I remember being in shock as I left the office, as we\u2019d just been in four weeks prior and our insensitive doctor had not seemed that concerned with the delays our toddler was demonstrating. I also remember as I made my way to the pharmacy to fill that prescription which would at least let me help him with something that I called upon my experience with the few autistic children I\u2019d had as a teacher in my homeroom and classroom, thinking those few encounters would give me a leg up on raising my own autistic child. Boy, was I wrong.<\/p>\n
As they say on \u201cGame of Thrones,\u201d I knew nothing Kim McCafferty.<\/p>\n
The year was 2004, when Jenny McCarthy and \u201crecovery\u201d were hot in autism land. While navigating doctors appointments and the murky and ultimately deeply disappointing world of what passed for Early Intervention in northern Virginia, I spent any time I wasn\u2019t interacting with my son researching autism on the internet, and God was it confusing.<\/p>\n
There were parents claiming the only positive outcome of this diagnosis could be a cure that led to recovery.<\/p>\n
There were autistic advocates and parents of autistic children claiming an alternative neurology cannot, nor should not, be cured.<\/p>\n
There were professionals informing me that studies showed that sign language gave kids an edge over learning to talk, and should always be employed.<\/p>\n
There were professionals informing me that alternative methods should always be explored, matching the child\u2019s strengths to the appropriate communication system.<\/p>\n
There were parents telling me not to vaccinate.<\/p>\n
There were physicians telling me I\u2019d better vaccinate.<\/p>\n
There were parents explaining to me that a public school program was the way to go for their opportunities for mainstreaming, which should be my ultimate goal.<\/p>\n
There were teachers sharing with me that despite the push for it mainstreaming might not be the most important goal regarding my son\u2019s future education.<\/p>\n
As I look over my list, I realize not all that much has changed in a dozen years.<\/p>\n
I did my best by Justin in those early and isolated years, reading and attending workshops whenever possible. I often felt the two of us were drowning back then, combating my son\u2019s insomnia, aggression, gastrointestinal disorders, and his religious adherence to having things a certain way that would ultimately earn him a dual diagnosis of OCD and autism. My husband worked, our families were three hours away, and all my friends either had careers or were busy raising babies of their own. I often felt adrift at sea, anchorless.<\/p>\n
Ultimately what I clung to to get through it all were my choices regarding Justin\u2019s treatment, usually based on articles I\u2019d read, clutching their information to me as tightly as I had clutched those initial articles which had in one instant completely altered my world.<\/p>\n
I displayed my own rigid behavior regarding that information. According to studies I\u2019d read sign language more often gave way to words, in my opinion a must for my boy even though his fine and gross motor abilities were severely delayed. I was told that he should absolutely attend a public school program both for the chance he\u2019d mainstream, and so he\u2019d make friends with neurotypical peers.<\/p>\n
And if it weren\u2019t for professionals who gently offered me alternatives to both of these choices and asked me to keep an open mind, despite my best intentions I would have done my son far more harm than good.<\/p>\n
After we moved to New Jersey and actually received appropriate Early Intervention services (yay the Garden State!) I clearly recall one of the therapists from Rutgers gently pointing out to me that after more than a year of working with my son he only had a handful of signs, and some of those were used sporadically at best. I remember initially feeling that using the PECS system meant giving up on words, instead of focusing on the fact that my then twenty-two-month old might actually end up with a way to communicate his needs other than by mostly crying.<\/p>\n
If I hadn\u2019t listened, he might have spent many more months often frustrated by his mother\u2019s inability to read his mind.<\/p>\n
I had that same rigid mindset originally as from Virginia we attempted to find the most fantastical, amazing, perfect autism program in the perfect NJ town (oy!) because I wanted my son in the public schools for the mainstreaming opportunities, and I didn\u2019t want him sent out of district. At the tender age of three I wanted him to have opportunities to engage with neurotypical peers because I wanted him to have friends, to interact with others. This was the most important goal in my life, more than losing that last seven \u201cbaby weight\u201d pounds or consuming large amounts of chocolate every day.<\/p>\n
Okay, that last is still an important goal.<\/p>\n
After four years in two different public school districts it became apparent that the only one who cared about his interactions with neurotypical peers was me, and that his home school district really didn\u2019t have an appropriate program for him anymore. I remember my mom, a special educator with three decades of experience gently telling me to look at the big picture for Justin, that perhaps him having friends was not the most important issue now, that in fact Justin really didn\u2019t seem to care about his peers. I recall making the mental shift to becoming open to sending him to a private autism school where educators could help him focus on the academics he loved so much, where down the road he would have better access to job programs and adult programs, and hell, even a swimming pool he\u2019d frequent daily during his eight week summer program.<\/p>\n
I know, we\u2019re spoiled.<\/p>\n
I\u2019m still learning how to make the shift from wanting for Justin what I think he should need to what he really needs (it remains a learning curve for me), and by keeping an open mind I know my choices for him have contributed to the thriving, happy teenager who loves school and loves his life. I still struggle to do this with both my boys (what parent doesn\u2019t), often employing a \u201cwhat would Zach\/Justin do\u201d mentality when considering my options.<\/p>\n
And I still make mistakes. I am still sometimes slow to recognize a shift in need, still working on ridding myself of \u201cwhat should be.\u201d<\/p>\n
But as with many things in life I\u2019m still a work in progress, and keeping an open mind is one goal I plan to keep.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n