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I have a confession to make to all of you, although for those of you who know me, this won\u2019t come as much of a surprise.<\/p>\n
I, Kimberlee McCafferty, am a planner.<\/p>\n
Perhaps I\u2019ve given myself away over the years, as when I mentioned at Justin\u2019s IEP meeting when he was seven that I really wanted a plan that would keep him happy for his eighty years on earth, or how I\u2019ve been talking incessantly about his post-graduation life which is still five-and-a-half years away.<\/p>\n
We all have our strengths.<\/p>\n
In fairness to me, much of this strategic planning initiative stemmed from my son\u2019s recent eligibility meeting, where an administrator from his school confirmed for me what I had dreaded hearing this past fall- that my dream of putting him in his school\u2019s post-21 program, for various reasons not relating to him, may not come to fruition.<\/p>\n
That dream was right up there with an entire childless weekend binge-watching \u201cSex and the City\u201d with martini in hand and never getting out of bed.<\/p>\n
To be honest with you, it takes a lot to break my heart these days, but this one really gets to me. You see, Justin loves his school, has been a student there since he was seven. They are amazing to him, love him and get him. Since there\u2019s no age limit that I know of in the post-21 program I had hoped he\u2019d remain on campus for decades to come, not just because that would give me some continued semblance of freedom (although that heavily factors in) but because even without him telling me I know it would be his first choice of how to spend his adult life.<\/p>\n
And for anyone who wants to argue with me asking how could I possibly know that? I will respond with, I\u2019m his mom.<\/p>\n
I just know.<\/p>\n
And believe me, I know, graduation is still over five years away, and as I look back at the last five years I am reminded that anything can happen.<\/p>\n
And it usually does.<\/p>\n
To tell you the truth however, I\u2019m glad I know this now, and not four years from now when I\u2019ll start looking at day programs for my boy who likes to be out of the house and kept busy. It\u2019s actually forced me to reflect not only on Justin\u2019s life and his projected adulthood- it\u2019s forced me to stop being so complacent over my current life, and having time to do things.<\/p>\n
While none of us knows how much time we have I also know this. That most of my friends with adult autistic children had a six month gap from the time they graduated until the time their services kicked in. I know that a post-21 program is not an entitlement- if he can\u2019t handle it for any reason, he\u2019s out. I also know that if we try in-home respite I will spend the better part of my life continually searching for decent, caring hard-working people to fill the respite role. In other words, who knows what I\u2019ll be able to do when his school entitlement ends.<\/p>\n
Truly people, I\u2019m living my retirement now.<\/p>\n
So I\u2019m putting this out there for those of my brethren who are five or six years out from watching their child graduate. I\u2019ve still got a few years before I have to encounter the labyrinth of guardianship, SSI, and Medicaid. Right now Justin is fully successful in his school program, and short of snow or illness I can count on him attending there his wonderful 210 days a year. My Mom is still young and game to help babysit wheever possible, and there are a lot of things I\u2019d still like to do when I can.<\/p>\n
And it\u2019s up to me to get my butt in gear and start doing them.<\/p>\n
Some of you with teenagers on the more severe end of the spectrum might be reading this and thinking that \u201cfun\u201d is not exactly your first priority now, as you may be dealing with all sorts of challenges with your child. Believe me, I get it. I\u2019ve been there too.<\/p>\n
But while you\u2019re dealing with all these challenges remember this autism journey is a marathon, not a sprint. You have to take care of you so you can take care of them.<\/p>\n
So make those dinner plans and stick to them. Have a certain location on your bucket list? Visit it now.<\/p>\n
Have the fun that you can while you still have the relative freedom to do it.<\/p>\n
And as I plan out my \u201c2019 fun\u201d for the year, I\u2019m taking my own advice and running with it.<\/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