"that's it. that's all i want." i cried as i finished re-reading the article out loud to mike called "looking into the future for a child with autism" written by the mother of a 21 year old man with autism aging out of school and into adulthood.
i could have written it, well, up until the end. it speaks of the yearly changes in expectations and dreams but how they move in the opposite direction of what you had hoped the year before. lower. smaller. farther from 'normal'. life with a child with autism is a long road of accepting that changes in the brain mean changes in a life. changes in a family. ongoing changes. it's years on a balance beam holding a pole with belief and hope on one end and fear and evidence on the other.
in the beginning of the beam crossing, the pole you hold is about whether this diagnosis is even correct. is this autism? or is she just a late bloomer? does she need assistance or will she catch up? it teeters back and forth and then stabilizes and you accept the diagnosis and the assistance. but it's just for now. the jury's out on the future.
you're holding the balance because your job as a parent is believe in your child, to not give up on them even when the world does. to not give up on them even when a part of you does. and to love them unconditionally no matter what. to accept them for who they are, not who you may have thought they would be. our job as parents is to guide them to be their best selves- but their own selves. hoping and accepting. that can be a challenge to resolve internally.
the days, like all our days, are filled up with good parts and hard parts and what defines good is often the lack of hard and that becomes enough.
there are stories. everywhere. the temple grandins. the over-comers who find their own way, their own path to independence and the ability to fit into the world not just sit beside it. and every story like that brings hope and frustration. it can be easier to see all that she hasn't overcome - than to see what she has.
then there are the other stories. self-harm and suicide. self loathing and depression. and i thank my lucky stars that she laughs and engages- that she's safe at least for now and i push the worry out.
as you keep crossing the beam, you find yourself letting go. you let go of college. you let go of high school graduation. you let go of independent living. your hope becomes getting up and dressed and finding something, anything that she likes enough to get up and dressed for. your belief is that she can. your fear is that she won't.
you let go of some of the dreams you had for your own life- being an empty-nester. significant travel. even increased work outside of the home. you long for the days when your special child will have her own dreams - her own hopes- something you can support her in and help her strive for. you long to pass the pole over to her- to walk beside her as she steps forward balancing her own hopes and fears.
this is the beauty and truth of the article. in his last IEP (individual educational plan) her son writes his own vision statement. he writes what she is unable to see - he writes when she no longer knows what to wish for and what this woman finds is that her son wants what she has already provided for him. he wants the best parts of the life he knows. the small joys. the moments. she learns what we all should strive for, that "your future should look like the best parts of your present." and that is true for us all.
as i sit and look at my present, in the thick of it, the still hair-washing, pill remembering, food making, computer taking, laughing, LPS playing, joking, beginner facebooking, trying, explaining, crying, and trying again, can i see the future as the best of these with no more?
yes. i can. if that's what she wants. i want her joy. i want her to know love, feel love, feel safe, feel good about herself. my hope now is that maybe in a few years, she too will be able to say what she wants. that the truth of who she is and always has been will come into to focus and our life will be enough- even if it looks just like today.
i could have written it, well, up until the end. it speaks of the yearly changes in expectations and dreams but how they move in the opposite direction of what you had hoped the year before. lower. smaller. farther from 'normal'. life with a child with autism is a long road of accepting that changes in the brain mean changes in a life. changes in a family. ongoing changes. it's years on a balance beam holding a pole with belief and hope on one end and fear and evidence on the other.
in the beginning of the beam crossing, the pole you hold is about whether this diagnosis is even correct. is this autism? or is she just a late bloomer? does she need assistance or will she catch up? it teeters back and forth and then stabilizes and you accept the diagnosis and the assistance. but it's just for now. the jury's out on the future.
you're holding the balance because your job as a parent is believe in your child, to not give up on them even when the world does. to not give up on them even when a part of you does. and to love them unconditionally no matter what. to accept them for who they are, not who you may have thought they would be. our job as parents is to guide them to be their best selves- but their own selves. hoping and accepting. that can be a challenge to resolve internally.
the days, like all our days, are filled up with good parts and hard parts and what defines good is often the lack of hard and that becomes enough.
there are stories. everywhere. the temple grandins. the over-comers who find their own way, their own path to independence and the ability to fit into the world not just sit beside it. and every story like that brings hope and frustration. it can be easier to see all that she hasn't overcome - than to see what she has.
then there are the other stories. self-harm and suicide. self loathing and depression. and i thank my lucky stars that she laughs and engages- that she's safe at least for now and i push the worry out.
as you keep crossing the beam, you find yourself letting go. you let go of college. you let go of high school graduation. you let go of independent living. your hope becomes getting up and dressed and finding something, anything that she likes enough to get up and dressed for. your belief is that she can. your fear is that she won't.
you let go of some of the dreams you had for your own life- being an empty-nester. significant travel. even increased work outside of the home. you long for the days when your special child will have her own dreams - her own hopes- something you can support her in and help her strive for. you long to pass the pole over to her- to walk beside her as she steps forward balancing her own hopes and fears.
this is the beauty and truth of the article. in his last IEP (individual educational plan) her son writes his own vision statement. he writes what she is unable to see - he writes when she no longer knows what to wish for and what this woman finds is that her son wants what she has already provided for him. he wants the best parts of the life he knows. the small joys. the moments. she learns what we all should strive for, that "your future should look like the best parts of your present." and that is true for us all.
as i sit and look at my present, in the thick of it, the still hair-washing, pill remembering, food making, computer taking, laughing, LPS playing, joking, beginner facebooking, trying, explaining, crying, and trying again, can i see the future as the best of these with no more?
yes. i can. if that's what she wants. i want her joy. i want her to know love, feel love, feel safe, feel good about herself. my hope now is that maybe in a few years, she too will be able to say what she wants. that the truth of who she is and always has been will come into to focus and our life will be enough- even if it looks just like today.
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