April Fool

Often the emphasis is on what the child cannot do. Often the emphasis is on evaluations, on questionnaires that take you from 1 to 5, always to never...Often the emphasis is on what would be the best early intervention program, best protocol, best diet, best therapies....Often the emphasis is on parents who would move mountains to make sure their child has a fighting chance...Often the talk is inspirational, motivational.......

But more often than not, I find myself strapped by love to a pendulum swaying between guilt, desperation, fear, anger, determination, education, advocacy and hope, I spend so much time in the guilt and hope the rest blurs into one stroke. I see him growing faster than I am able to process, chronologically 11, developmentally no where near...He wanting to connect with others, and they so much further ahead of him. He had a meltdown today, and after he left I had one of my own. It's April Fools day and for the first time ever, he wanted to pull a prank on his classmates. The prank he wanted to pull off in his mind took the shape of a circus, and everyone was to participate. What tipped me off to this was the big white plastic hefty bag he put all his stuffed animals, instruments and costumes in, and was pulling towards the door. "Gabe you can't take this to school" I say..."But this is my prank" he anxiously cries. I poke and pry and he tells me his plan and I try to tell him that is not a prank, I give him an example, I tell him we can come up with a good one together....but he melts. He wants to invite his whole class over for the circus in his room...round 2...I try to handle it delicately. I tell him you can invite a friend tomorrow to come and play with you. The meltdown went to the next level, on the floor, banging his head with his hands, incoherent. He was so confused about what a prank meant, he tries so hard with the jokes, he tries so hard to figure out what our expressions mean, and we forget the sensory issues, we forget the processing issues, we have no patience and expect him to have all the patience in the world with us. But he was so lost inbetween worlds. He was so lost inbetween meaning. He was so lost for words. So he cried, and tried to gather himself up, tried to pick up the pieces, while I swayed between frustration, anger, tremendous guilt, trying desperately to get to hope. His bus came when he was just about calm. He gingerly put his coat on, slung his arm through the loop of his backpack and hoisted it perfectly in the center of his back. With his head hanging low I watched him methodically place one foot in front of the other. Today the bounce was gone. Later in the day I know he would have a science test, the universal irony is that the test is about the environment, mutations, inheritance, structural adaptations, behavioral adaptations, pesticides, and how they affect us. He has no idea how long I have studied these very things, though not for a class....for him...I watch him take the 2 steps up and disappear into the back of his little yellow ochre school bus. The doors close, and my heart misses a beat.

More often than not it is a struggle for every mom who loves her ""Gabriel to balance the unfair weight of trying to give everyone equal time in the spotlight while running a household, running errands, tending to everyone's needs, building experiences and memories while creating a warm comfortable life. Throw in special needs and the guilt of feelings associated with not being able to fix it all, the frustrations, the mystery, the injustices, the not being able to be superwoman when you really need super powers....When doing the best you can sometimes, or most times isn't enough.....when all you want is for your kid to have a chance at living a good, happy, healthy life....suddenly you are instantly strapped onto that pendulum.....

It is not lost on me that Gabe was able to tell me what it was that he wanted to do. That took alot of hard work, alot of research, therapies, and lots of luck...I stand on alot of shoulders...I feel unbelievably grateful to have that. Seven years ago I was in tears holding onto his multicolored battery operated oinking pig begging him to please tell me who gave it to him, and I got nothing...no eye contact, no connection to my tears, no recognition of my presence, he turned around, gave me the back of his head and hurried off to line something up and then to climb onto something else. So I do know hope. But there are those days, when you are at a loss between 2 worlds, between all meaning, when you have trouble with expressions and making sense of it all....and what feels like a circus somehow has to be a colossal prank, and it's April Fools, but it's no joke, because it is life lived on a Spectrum strapped onto a pendulum by love......and the swings it takes, from one instance to the next.....is as unpredictable as life is.....

Often the emphasis has to be on everything....................................
and everyone....................
and pendulums.................
and swings............................

and love.