![\"Justin](\"https:\/\/www.shorebeat.com\/brick\/wp-content\/uploads\/2016\/05\/Justin-BD-2016-Scouts-003-400x533.jpg\")
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My head is spinning.<\/p>\n
I\u2019d like to tell you it\u2019s for a fun reason, like when I used to be able to stay out late in my glory days (I remember them fondly). To tell you the truth my brain is literally pulsing with information, ideas, and choices.<\/p>\n
If I\u2019m honest, it\u2019s mostly the choices throwing me for a loop.<\/p>\n
I just finished reading Susan Senator\u2019s \u201cAutism Adulthood,\u201d and while I\u2019m contemplating the enormous amount of information within her tome (so much of it positive I\u2019m happy to say), I\u2019m also coming to terms with the fact that next week I\u2019m the mother of a teenager.<\/p>\n
Of course, that\u2019s a sobering thought all by itself. Couple that with being the mom of a severely disabled teenager who will need lifetime care, and my chocolate stash is far from being safe.<\/p>\n
Justin\u2019s adulthood is creeping up on me, and believe it or not I feel blindsided as just yesterday we were conquering sleep issues and potty training, and it seems incomprehensible to me that he\u2019s almost thirteen. Yes, he\u2019s got eight more years of school before he\u2019s in the real world, and officially \u201ctransition\u201d and all it encompasses doesn\u2019t start until he\u2019s twenty-one, but his adult life is coming.<\/p>\n
Like winter, it\u2019s coming.<\/p>\n
I would love to tell you I have a plan, although to be honest, my motherhood plans have more often than not deferred to \u201cplan B\u201d over the past decade. It\u2019s not as if my husband and I haven\u2019t been faced with big choices since our eldest\u2019s diagnosis. One of our first dilemmas involved breaking into our savings to shell out four figures a month for our son\u2019s ABA program which wasn\u2019t covered at the time in Virginia, a decision we continue to be grateful we made. When we were faced with the fact that our school district\u2019s autism program was good but would never provide him the one-on-one aide we felt he desperately needed for his academics, we made the decision to leave DC and relocate to Jersey which we\u2019ve never regretted either (although we still miss our nation\u2019s capitol to this day.)<\/p>\n
We\u2019ve known when to fire therapists, and when to try to keep people in our retinue at all costs. There\u2019ve been med choices and school choices and \u201cdo we try this therapy even though it\u2019s not covered\u201d choices (oh my!), but I have to say most of the time Jeff and I knew what to do. Very rarely have we looked back and wished we\u2019d taken the road less traveled.<\/p>\n
And yet when it comes to Justin\u2019s living\/day-time arrangements post-21, I am literally in a quandary that even dark chocolate doesn\u2019t seem to help.<\/p>\n
I will preface what I\u2019m about to say with the fact that eight years out I certainly don\u2019t know what my options will be, and since the adult autism landscape seems to improve at least a bit every year I\u2019m hopeful I will actually have choices in 2024, but we\u2019ll see. Again, even my best-laid plans won\u2019t come to fruition if there aren\u2019t good programs and residential services, and equally importantly, openings.<\/p>\n
But even if I one day have a smorgasbord of options (yes, I relate everything to food) at least at this point I\u2019m just not sure what will be best for our son, and what\u2019s best for us.<\/p>\n
I\u2019ve had the good fortune over the last few years to watch friends and acquaintances create post-twenty-one lives for their adult children, and I\u2019ve seen all different scenarios come to life. One family I know has kept both their children home and have all-day care almost seven days a week, which enables my friend to work and have a modicum of freedom in her life. I\u2019ve seen another friend place their child in a residential setting where he is finishing his schooling and absolutely thriving after having made a wonderful transition, seeing his parents frequently and seemingly loving his life.<\/p>\n
One thing I\u2019ve learned for sure with autism- it\u2019s important to keep your mind open.<\/p>\n
I know there will be immeasurable growth with Justin over the next eight years. He is a completely different child than he was at five, spends most of his days joyful, is very close to my husband and me. Honestly, except for his OCD moments and his frequent desire to not stay anywhere outside of our home for more than fifty-three minutes he is delightful. As the years have passed we\u2019ve watched our lives grow easier, our ability to make our own choices grow, and his happiness with his life increase.<\/p>\n
Amen to that.<\/p>\n
And maybe I should table all this contemplation for a few years, but it\u2019s not in my nature to do so, so here I am. If I\u2019m really honest it\u2019s the decades he\u2019s here without me that are the most painful, and in truth I\u2019ve shelved thinking about them in part because they\u2019re not here yet, and in part because they haven\u2019t invented that damn aging pill yet that lets me get to 110 with all (or most) of my faculties.<\/p>\n
Here\u2019s hoping.<\/p>\n
So most of the time I choose to focus on the years I\u2019ll still be here, guiding his life, hopefully providing a plan for him where he is as happy as he is now with school and living with us.<\/p>\n
And here\u2019s where I get stuck, because I\u2019m not sure if what\u2019s best for Justin is what\u2019s best for us.<\/p>\n
Jeff and I are both fiercely independent people. Honestly, one of the hardest parts of parenting for us was not the sleep deprivation (although that sucked too) but the loss of freedom one eight pounds of glory bundle presented us with thirteen years ago. When I think of retirement I imagine travel, and having those stay-in-bed days I lived for back in my youth. I can\u2019t imagine worrying if my babysitter will bail when I want to go see colleges with my younger son, or go to my niece\u2019s wedding.<\/p>\n
I can\u2019t imagine one day just not being able to do whatever the hell I want again. I really liked those days.<\/p>\n
But as I think of this scenario I look at my boy, and I know people will say I shouldn\u2019t speak for him, but I can\u2019t ask him this, so I just have to guess. I know in my heart he\u2019d want to stay with us forever, would be perfectly happy to go to his school until he was an octogenarian, loves the routine he craves that we\u2019ve provided for him. He will not be a fan of day programs, and since Great Adventure isn\u2019t open every day of the year I see long stretches of \u201csameness,\u201d of a lack of stimulation and a lack of just something to damn do that I can\u2019t figure out how I\u2019ll provide for him.<\/p>\n
Just in case you think we don\u2019t think out of the box we\u2019ve contemplated Hawaii which supposedly has fabulous adult services. Justin could spend his forty-three minutes at the beach and ride his horses daily, and Jeff and I could live in paradise.<\/p>\n
I figure we\u2019d be very popular with friends and family.<\/p>\n
The truth is I just don\u2019t know what\u2019s best for all of us. I struggle, because I know that by potentially putting him in different settings the people who care for him won\u2019t always know what he needs the way his mom and dad do, but I also know he will have to deal with that eventuality someday.<\/p>\n
So when is it best to start?<\/p>\n
Will I know what to do?<\/p>\n
Will my expectations and hopes match my options?<\/p>\n
Will Justin approve?<\/p>\n
Wherever he is, will he be loved at least a little?<\/p>\n
And as I pop that last allotted chocolate into my mouth, my head is still spinning.<\/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