When you have a child who is, at age 11, essentially non-conversational (see what I did, a few years ago that would have said non verbal. We're slowly... oh so slowly... making some major progress here), your priorities shift.
So these are the things I want for Christmas...
~ i want to know Dominic's favorites... I want to know what color is his favorite, what movie, what animal, what subject... I crave those things and because he doesn't have the ability to tell me I have no idea. Frankly I'm not convinced he understands the concept of favorite.
~ i want to have a conversation with my child. He's 11, I should be able to TALK to him and get a back and forth conversation going. We have SOME back and forths, precious few. To this day, the only thing he has EVER been able to say to me when asked "how was your day" is "school, fun". Were it not for his teachers, I wouldn't know a thing about his day.
~ i want him to have an age similar friend, that he can hang out with.
~ I want to be able to try all the amazing interventions that we just plain can't afford. HBOT, Stem Cells, yadda yadda yadda (and I know we manage to make the things we REALLY need happen, but that won't stop me from wondering if those things could help him more now).
~ I want the security of knowing that he'll be able to take care of himself when we are gone. I don't have any idea what will happen to/for him when we die. No clue.
~ I want to be able to stop being terrified of the numbers. he's got a 25% chance of developing grand mal seizures when puberty hits, and its knocking. He's got a chance of wandering off and drowning; he's statistically likely to be abused by a teacher / bus monitor / etc... when the statistics are there and you can't deny them its like you're drowning in a sea of fear.
~ I want to stop seeing autism everywhere I go. That child with rosy red cheeks, the other one with a facial droop, the toe walker, the kid screaming and flailing in the exhausted mom's arms. They don't know yet. They will.
I want the autism community to learn to have grace for each other. To stop and and remember that article that acknowledged we have a similar level of PTSD to combat veterans and to treat each other gently.
So these are the things I want for Christmas...
~ i want to know Dominic's favorites... I want to know what color is his favorite, what movie, what animal, what subject... I crave those things and because he doesn't have the ability to tell me I have no idea. Frankly I'm not convinced he understands the concept of favorite.
~ i want to have a conversation with my child. He's 11, I should be able to TALK to him and get a back and forth conversation going. We have SOME back and forths, precious few. To this day, the only thing he has EVER been able to say to me when asked "how was your day" is "school, fun". Were it not for his teachers, I wouldn't know a thing about his day.
~ i want him to have an age similar friend, that he can hang out with.
~ I want to be able to try all the amazing interventions that we just plain can't afford. HBOT, Stem Cells, yadda yadda yadda (and I know we manage to make the things we REALLY need happen, but that won't stop me from wondering if those things could help him more now).
~ I want the security of knowing that he'll be able to take care of himself when we are gone. I don't have any idea what will happen to/for him when we die. No clue.
~ I want to be able to stop being terrified of the numbers. he's got a 25% chance of developing grand mal seizures when puberty hits, and its knocking. He's got a chance of wandering off and drowning; he's statistically likely to be abused by a teacher / bus monitor / etc... when the statistics are there and you can't deny them its like you're drowning in a sea of fear.
~ I want to stop seeing autism everywhere I go. That child with rosy red cheeks, the other one with a facial droop, the toe walker, the kid screaming and flailing in the exhausted mom's arms. They don't know yet. They will.
I want the autism community to learn to have grace for each other. To stop and and remember that article that acknowledged we have a similar level of PTSD to combat veterans and to treat each other gently.
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