What do you do when silence reigns? Questions swirling in your head, screaming for answers, yet with the outcome residing in an unknown land, how then can a decent response be given? The past and maybe even the present should be able to be somewhat of a map, but how reliable can that actually be if each day the ride changes? Tomorrow is coming and there is no script. My son will be 18 in a few years. What does that really mean when you consider he has autism? I know that I won’t live forever, but what does that even mean as it relates to life after me? Guardianship? How does that work? I’m told if Callie isn’t able to comprehend money, healthcare, education, and life in general on his own, a guardian (such as a parent) needs to be appointed. Not as easy as it sounds. Lots of “catch 22’s” in the mix….and my brain has shut down momentarily trying to wrap my understanding around the essence of stripping my son’s decision-making authority based on “incapacity” or “incompetency” when he is capable and competent of many things. Let’s go a simpler route, as if that’s possible… Home vs. Group Home. Not liking this either. At home, my sons’ needs are second nature. I breathe his routine, and all of my senses are on high alert with his every move. At home, he’s in the nest of familiarity and I can reach him. He can reach me. But does his occupancy at home keep his wings from flying on his own? Mom is always there….but what happens after Mom? The other option is group home. Truth and fear keep whispering “Who are they? Fact: There are many places that actually are gifted to care for the residents that is placed in their hands. But fact — There are also many places that do not care for their residents as they should……Soooooooooo — Do I dare trust that maybe, just maybe they will be as protective & nurturing as I am? Will they look beyond the diagnosis and see my child’s true worth or will he be a name or case number in their system that they barely notice all because he’s new or he appears no different than all the others? That’s if, of course, they ever get to my child, seeing how the waiting lists are unbelievably the length in distance of circling the earth and back. Ok and what about schools? Vocational/Trade? College vs. University? What courses to take? And are tutors & aids present for assistance for each class….after class? Job training? When does that start? Callie loves computers, but does that mean a future in the library, fast food, retail, banking, electronics or engineering? Although the possibilities are endless, who will help him to decide? Who will believe in him to give him an opportunity? Healthcare? Don’t have to be rocket scientist to know that doctors treat patients, but do they know how to “treat” individuals on the spectrum? How do they relate? This is not “a lollipop at the end of a visit” kind of thing where candy is the solution to all. He’s an adult. How do you explain that the medication has side effects? How do you tell him to go home and rest when his routine says, next – the library or snack or work or walking the dog? Even better, how do you handle a person in pain who can’t communicate where that pain is coming from? And law enforcement? They scare me. Many doctors aren’t trained properly to assist people with autism, so I think it is safe to say many police officers are pretty much clueless. What happens when my son does not respond in the manner acceptable to them? What if they have not had any proper training on safety measures for the special needs community? What happens then?
I’ve rambled on and on and on, asking questions desiring nothing more than for my unpreparedness and constant worry to be on display. I’m sure I’m not alone. It would be nice if I could close my eyes and watch life slowly walk me hand and hand on this journey. It would be nice if Callie’s birthdays were far and between, so aging wouldn’t turn the corner so fast. It would be nice if somehow the world would change for the better…..so, when my eyes do finally open, society would see Callie as I have always seen him. Services and funding won’t be out of the question. Acceptance, respect and tolerance won’t be foreign. And embracing my son with abundance of love will be free from the fear that the world will love him less. I don’t know what the future holds for my child. I know I have a lot of ground work to do to undergird him for life after school…..and even life after me. Housing, medical, money, school, jobs… all on my radar for research & planning, but how do you build a wall around your most valuable to prevent him from being susceptible to the weight of stares, heartless comments, and impatient vibes? What happens when the better reality you spent your life structuring comes tumbling down with one look or one word that suggests “different” is the opposite of what you taught him to believe? What happens when rejection becomes the norm all because his name has been replaced by a disorder and his weaknesses have camouflaged his strengths & his potential? Silence reigns again because some things can’t be taught….and if you’re not there anymore, it can’t be reminded. There’s no visual to clue him on how to safeguard himself from the cruelty that exists amongst us. However, I will construct and begin laying down the foundation for what can carry him far, and will surround him with tools and resources that will set him in motion But where I fail to line up the dominos to fall in a row, I pray hope will be the rope that my son hangs onto with all his might and I pray he knows that my love is the knot at the end of it.
Thanks for listening,