Most days I am an encourager. I can play the part of Pollyanna as well as Haley Mills did in the old Disney movie. And I cannot be shaken. Go ahead world: throw things at me. Go ahead autism: hit me with your best shot. I will not be discouraged. I will not be swayed. If there are silver linings to be found I will uncover them.
But the truth is: even when I am acting the part of Pollyanna I know that Pollyanna cannot make our reality better. She can only make us feel better about our reality.
There are occasional days when I cannot convince myself to play the part of Pollyanna because I have become disheartened. When that happens, I feel like I am just one big heavy sigh away from the edge of hopelessness. Days like that sneak up on me. They come at times when I am tired or when autism shows us something we have not seen before and have not prepared for. They come when autism has won the battle and kept us from teaching Tate one more skill he needs to succeed in this life.
Those days I feel as if I am drifting in a dilapidated boat in an ocean of autism. My son Tate and I are adrift together, but his disability isolates me from him so it is as if we are each alone.
Alone.
Together.
There are clouds above but I cannot find the silver linings. Drops of despair pummel me, filling the bottom of our boat with water. The unforgiving drops sting and leave marks as uncomfortable reminders. Tomorrow Pollyanna might minimize them for me but she’s nowhere to be found today.
The school year is coming to a close and it is time for meetings and evaluations and report cards, I hear the teachers say, “We enjoy your son so much! He’s doing well in school!” But then I look at the papers lying in front of me. In a nutshell, they say, “Your soon-to-be high school student is still working on second grade math and reads at a fourth grade level.” How can this be? Pollyanna! Make me feel better! Have you nothing to say this time? Well at least grab a bucket and help me bail! Our boat is sinking! Do you not feel it? HELP ME BAIL!
Sometimes, on these days the ocean becomes so rough it leaves me seasick and deeply discouraged. I long for solid ground, the ground I used to stand on, before the overwhelming diagnosis of autism. The land of opportunity: where I used to picture Tate going to college, working, driving, and raising a family. It no longer seems like a land of opportunity, but like a land of impossibilities.
I feel the waves of unforgiving truth trying to capsize our rickety boat. Pollyanna might say things like: “It could happen one day.” Or she might start listing famous people with autism who overcame the odds. She’s always the optimist.
But deep down, even Pollyanna knows, no matter the age, Tate will probably never be able to problem solve on the level it takes to drive. He will never have the skills needed to fill out a job application or take a college course. He will not be developing the kind of maturity it would take for him to live independently. That’s the harsh reality, and no amount of cheerleading or feel-good sentiments will change that.
Some days I have to face harsh ugly facts and a Pollyanna attitude cannot dilute the grim reality.
The boat is still afloat but the waves are coming in over the sides as I frantically bail water. The rain still falls into the boat from above. I cannot let the boat sink! I can swim in these waters and perhaps reach the solid ground. But Tate cannot.
He does not know yet. He does not understand that he will never truly grow up. His body will age but he will forever need the supervision and guidance he has always needed.
I have to keep bailing and keep him afloat.
I search for an umbrella or anything that can help me keep some of the water from falling into the boat. And I find something! It’s not big enough or strong enough to completely block out the rain and the waves. But it helps, just enough. And my resolve is strengthened.
I have asked Tate’s siblings to make promises to me. And they do. Someday they will take turns keeping Tate safe, helping him to stay afloat. My hope is that the promises they have made me about the future are not unrealistic. I know the promises I have asked them to make are unfair. But autism does not play fair. Autism is unreasonable. Autism steals and cheats. Autism makes overwhelming demands and tries to sink our boat.
I will continue to balance in this shaky boat as best I can on the hard days, keeping Tate safe until I’m too old to do it anymore. Pollyanna will be around on most days finding all the silver linings.
Smiling.
Encouraging.
Because Pollyanna can make us feel better about our reality, even though she cannot truly make our reality any better.
You might also like to read: The constant drip, Perseveration
You might also like to read: The constant drip, Perseveration
they do have job coaches, that will go with people who have disbalities to job interviews. I am not sure if it is avliable where you live. I think they also find jobs
ReplyDeleteThere is truth in what you are saying, and, like everything you write, it is well said. I know at these times there is little that can make you feel better, but I will try.
ReplyDeleteWe all want our kids to have a job, to drive, to be independent - basically, to have a happy life. But that's what we want - that's our definition of happy. Maybe Tate's happiness isn't totally contained in what we want. Maybe having the security of a loving family is and will continue to be his source of happiness. I know some people who would trade their present life for that.
You are very fortunate to have such a large set of family members who can support Tate when you can no longer be there for him. That is a blessing.
I hope Pollyanna comes back soon!