Why I am giving up Autism for Lent
Today is Ash Wednesday, which marks the beginning of the season of Lent. It is a period of time set aside for us to reflect, fast, and do penance. The ashes are meant to symbolize our blessings, as well as help us to develop a spirit of "humility and sacrifice." (source: Catholic Online).
Every year, I think of something to "give up" for Lent. This year, I chose to ignore Facebook for the forty days. FB is an amazing tool for connecting with family and friends, and I love to share sweet pictures of the kids, or follow those who don't live near us...and for Peter and I, so many of our family and friends live out of state. But for these forty days, I am turning the focus to us. Our family.
Today as I received my ashes and knelt for a prayer, a huge wave of overwhelming joy, grief, and every emotion in between became so apparent. My prayers typically are directed towards Hunter and his recovery, as well as asking God to give me the strength to endure the hardships, the love to unconditionally accept the challenges we face, and the courage to face this disorder every minute of every day.
Until today. I am wiping the slate clean for the next forty days.
From today until Easter, I am no longer going to use Autism as an excuse. I am not going to assume that every meltdown, every hard day is related to Autism. I am not going to assume that every 4:30 AM wake up call, like today, is related to Autism. I am not going to assume my personal stress has been elevated due to the eighteen times I had to ask Hunter to sit down at the table for dinner. I am not going to blame Autism for the logistical craziness that our family endures to encompass all aspects of the therapy that he needs. I am going to take these challenges as exactly what a challenge is: a demand that calls me to engage with all of my strength and skills.
From today until Easter, I am no longer going to tell other people that my son has an Autism Spectrum Disorder. When he was first diagnosed, I felt the need to share this information with others. Granted, those who need to know, such as teachers, professionals, and family and close friends, all do deserve to know and have a right to know that my son has special needs. Being able to say the word "Autism Spectrum Disorder" allowed me to progress in my grieving process- somehow, saying the words aloud made it seem a little more real. But the empathetic, assuming, staring eyes of the checkout clerk do not need to know. The acquaintance I haven't seen in a long time doesn't need to know of the recent diagnosis. And new friends made along the way don't have to know his entire health history the first date of meeting them.
You see, I just told an acquaintance at an event that my son had an Autism Spectrum Disorder, and I didn't like the answer I heard.
"Oh, I kind of thought so, just by watching him."
At that point, I knew in order to truly focus my strength and my optimism in the right direction, I needed to curtail my previous openness. Obviously, in writing this blog, I don't mind sharing our recovery efforts as well as struggles. However, it will not be shared as an excuse for a behavior, as I feel maybe was the motive behind the discussion.
From today until Easter, I am going to look at my son as a four and a half year old boy. I am going to stop speaking for him, stop putting his shoes on for him, and stop prompting him in every social situation because, according to my therapists, as well as our observations, he is ready to do this on his own. I have lived the life of doing all of these things so routinely because the only thing I have known for the past year is Autism recovery. How to remediate language. How to promote social relationships. How to react to behavioral challenges. And how to best catch him up to his peers.
For forty days, I am going to challenge myself to reflect and recall, to understand that just like these ashes on my forehead, I have been given countless blessings in my life. I am going to further develop a sense of "humility and sacrifice," and remember that we are not the only family faced with hard times. In a world where a new diagnosis is made every day, families are torn apart, and people are taken from us at the tick of a clock, life needs not to be taken for granted and we are to live each moment to the fullest.
For forty days, I will not wish for my magic wand. I will not wish to change November 2009. And I will not expect anything less than "normal" for my son.
I may be giving up the diagnosis for Lent, but I will never, ever, give up on my son.
Every year, I think of something to "give up" for Lent. This year, I chose to ignore Facebook for the forty days. FB is an amazing tool for connecting with family and friends, and I love to share sweet pictures of the kids, or follow those who don't live near us...and for Peter and I, so many of our family and friends live out of state. But for these forty days, I am turning the focus to us. Our family.
Today as I received my ashes and knelt for a prayer, a huge wave of overwhelming joy, grief, and every emotion in between became so apparent. My prayers typically are directed towards Hunter and his recovery, as well as asking God to give me the strength to endure the hardships, the love to unconditionally accept the challenges we face, and the courage to face this disorder every minute of every day.
Until today. I am wiping the slate clean for the next forty days.
From today until Easter, I am no longer going to use Autism as an excuse. I am not going to assume that every meltdown, every hard day is related to Autism. I am not going to assume that every 4:30 AM wake up call, like today, is related to Autism. I am not going to assume my personal stress has been elevated due to the eighteen times I had to ask Hunter to sit down at the table for dinner. I am not going to blame Autism for the logistical craziness that our family endures to encompass all aspects of the therapy that he needs. I am going to take these challenges as exactly what a challenge is: a demand that calls me to engage with all of my strength and skills.
From today until Easter, I am no longer going to tell other people that my son has an Autism Spectrum Disorder. When he was first diagnosed, I felt the need to share this information with others. Granted, those who need to know, such as teachers, professionals, and family and close friends, all do deserve to know and have a right to know that my son has special needs. Being able to say the word "Autism Spectrum Disorder" allowed me to progress in my grieving process- somehow, saying the words aloud made it seem a little more real. But the empathetic, assuming, staring eyes of the checkout clerk do not need to know. The acquaintance I haven't seen in a long time doesn't need to know of the recent diagnosis. And new friends made along the way don't have to know his entire health history the first date of meeting them.
You see, I just told an acquaintance at an event that my son had an Autism Spectrum Disorder, and I didn't like the answer I heard.
"Oh, I kind of thought so, just by watching him."
At that point, I knew in order to truly focus my strength and my optimism in the right direction, I needed to curtail my previous openness. Obviously, in writing this blog, I don't mind sharing our recovery efforts as well as struggles. However, it will not be shared as an excuse for a behavior, as I feel maybe was the motive behind the discussion.
From today until Easter, I am going to look at my son as a four and a half year old boy. I am going to stop speaking for him, stop putting his shoes on for him, and stop prompting him in every social situation because, according to my therapists, as well as our observations, he is ready to do this on his own. I have lived the life of doing all of these things so routinely because the only thing I have known for the past year is Autism recovery. How to remediate language. How to promote social relationships. How to react to behavioral challenges. And how to best catch him up to his peers.
For forty days, I am going to challenge myself to reflect and recall, to understand that just like these ashes on my forehead, I have been given countless blessings in my life. I am going to further develop a sense of "humility and sacrifice," and remember that we are not the only family faced with hard times. In a world where a new diagnosis is made every day, families are torn apart, and people are taken from us at the tick of a clock, life needs not to be taken for granted and we are to live each moment to the fullest.
For forty days, I will not wish for my magic wand. I will not wish to change November 2009. And I will not expect anything less than "normal" for my son.
I may be giving up the diagnosis for Lent, but I will never, ever, give up on my son.
Comments
Post a Comment