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Remember how I said I was doing my best to live in the present, enjoy the successes and triumphs of my children, not project our current struggles into the future, and, in general, \u201cjust be?\u201d<\/p>\n
I lied.<\/p>\n
To be fair, I only lied for about an hour, as I made my way home from a workshop with my head spinning about possibilities for Justin\u2019s future, a future I\u2019ve begun to tentatively explore with a very tempered enthusiasm, and quite honestly, some confusion. I\u2019m exploring funding, living arrangements, and day programs, and I\u2019ve gotten my hands on some good literature that I\u2019ve been attempting to decipher. I remain grateful I have friends on the \u201cother side\u201d of twenty-one who I know will help me decode the terms, aware all along that the \u201cabyss\u201d as some parents have termed it is for us eight years away, and a lot can happen in eight years.<\/p>\n
When I think of all that\u2019s happened since Justin turned five, I can say with absolute certainty that a great deal can happen in eight years.<\/p>\n
For the past six months or so I\u2019ve been delving into Justin\u2019s possible future opportunities, considering living arrangements (which I imagine will be the trickiest of the residential\/job\/day program trifecta), contemplating whether or not he could work at a job a few hours a day, and researching possible programs where he could spend at least six hours daily, hopefully at times engaged with the community. Last week my head was spinning in a good way as I had heard about several day programs that might possibly be right for Justin, programs with good reputations, activities out in the real world, places that don\u2019t sound like \u201cwarehouses\u201d for disabled people. I am very interested in these programs as one thing I do know about Justin is that he is happier when he\u2019s out of the house for long periods- his OCD is more subdued, he\u2019ll engage in more productive activities when he is at home, and he\u2019s just plain happier.<\/p>\n
With Justin, or hell any child on the spectrum, happy is key.<\/p>\n
I have friends who are doing all sorts of programs with their kids. One friend has their son in a day program he calls \u201ccollege.\u201d One friend with two adult children on the more severe end of the spectrum has one out of the house most of the day in so many fabulous activities that I\u2019m jealous, and one who\u2019s more of a homebody has support daily in his house. The trick with Justin will be to find a program he will actually enjoy, because if he doesn\u2019t he will be standing at the front door of the establishment waiting for his transportation to come pick him up, saying \u201cMama\u201d and letting his caregivers know in no uncertain terms that he wants to go home.<\/p>\n
And the thing is, eventually my husband and I will die or no longer be able to care for him. He simply can\u2019t be home all day every day forever. He needs to continue to get out into the world. And I\u2019ve got to figure out a way to do that, both for him, and for us.<\/p>\n
I have a rich fantasy life when I run (it\u2019s where I do my best thinking), and to be honest with you, during my little three mile stints I\u2019ve fashioned the perfect post-twenty-one world for the McCafferty family. In my fantasy world our family and a number of like-minded souls form a compound like the Kennedys, where our children all live in one residence and their parents live nearby (yes, it\u2019s resort-like, and it\u2019s a fantasy people). Each adult autistic individual has 24\/7 care. Our compound includes an indoor\/outdoor swimming pool, a movie theater, bowling (why the hell not?), a sensory gym, a fitness room, a large media center with any type of technology our kids could need, and last, a spa (okay, that\u2019s for me, why not throw in a winery while I\u2019m at it). We can see our kids and take them out whenever we want, but we have adult space for ourselves as well. When parents want to travel, we all pitch in and keep an eye on each other\u2019s kids.<\/p>\n
Okay, it sounds a little like a commune. But in a good way.<\/p>\n
Clearly, short of winning the lottery (I try!) I don\u2019t envision my little compound coming to fruition. But I\u2019ve begun to feel I might be able to piece together a patchwork of a life that my boy will enjoy, and one that stretches him a little too.<\/p>\n
And for once, dabbling in the future feels good.<\/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