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Dear Universe,<\/p>\n
Okay. You win.<\/p>\n
Here\u2019s the thing Universe. Whether you acknowledge it or not it\u2019s time to cut this family a break. We have remained collectively upbeat this past twelve months despite some really nasty life changes I won\u2019t go into here, plus the chaos of our house almost burning down and the four months of repairs that ensued.<\/p>\n
We have been really, really mature.<\/p>\n
I probably brought this on us by allowing myself to breathe a sigh of relief this fall when things were looking up. You see, I relaxed my vigilance with autism and its never-ending surprises, and that\u2019s when catatonia came to call.<\/p>\n
You got me universe. With the onset of puberty I was gearing up for seizures and renewed aggression. I\u2019d never even heard of autism-related catatonia.<\/p>\n
Again. You win.<\/p>\n
But here\u2019s the thing universe. This family has weathered Justin\u2019s aggression, insomnia, refusal to eat, eating too much, extreme OCD, refusal to potty train, and probably a host of other issues my very tired brain has blocked out to survive. Each time, Jeff and I sucked it up and went at each issue with a many-pronged approach, employing behavioral techniques, using medicine when necessary and being vigilant in our efforts to help our boy. The truth is universe, it gets more difficult for us every time because we\u2019re older, which doesn\u2019t bode well for us since we\u2019re looking at at least another decade of full-time care of our son, and probably much longer than that.<\/p>\n
I guess what I\u2019m saying is I\u2019m reaching my \u201csucking it up limit.\u201d<\/p>\n
It\u2019s been eight months since Justin\u2019s symptoms started, and the irony of it all is we\u2019ve consulted four different practitioners, and there have been five different diagnoses trotted out for him (yes, I said five). Of course, just to keep things fun, these five different diagnoses all have completely different treatments, so I anticipate if things don\u2019t improve for Justin, trying everything out could take until he\u2019s twenty-five.<\/p>\n
Okay, maybe another year, but it will FEEL like he\u2019s twenty-five.<\/p>\n
It\u2019s been a long eight months, universe. The thing is this thing he has, whatever it is, is a game changer. I\u2019m not sure he won\u2019t get kicked out of camp because of it. I worry no twenty-one plus program will take him with it. If his symptoms progress I worry about his residential care, because at some point dear universe, Jeff and I will need someone to take care of us, and I can tell you right now that someone won\u2019t be our eldest boy.<\/p>\n
In other words universe, this is a big freakin\u2019 deal.<\/p>\n
We\u2019re making some changes with him medically, and I\u2019ve been told both that the symptoms can go away or at least go into remission, so we do have hope. We\u2019re doing every suggestion that\u2019s been made to us (like we always do), so universe, I\u2019m asking you to come to the table and do your part.<\/p>\n
Help my son. It just can\u2019t be that hard.<\/p>\n
I hate whatever the hell it is that he has. When he\u2019s in an episode, he is robbed of all joy in his life. When he\u2019s not in an episode, he is the happiest, loveliest child ever.<\/p>\n
Bring back that child.<\/p>\n
I want him happy, healthy and whole. I want him to be able to enjoy the summer, this season that he loves so much.<\/p>\n
I want to see him smile.<\/p>\n
Pony it up universe.<\/p>\n
I\u2019m waiting.<\/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