Major Guilt and Buckets of Tears 16

Asperger's Syndrome, Autism Spectrum, Differences, Family, Forgiveness, Girls on Autism Spectrum, Gratitude • Tags: , , ,

It is either already or almost Thursday in much of the world so instead of Wordless Wednesday I share this post inspired by Breathe In Now « Try Defying Gravity.

Mistakes Made, Opportunities Missed and Guilt

I still cry sometimes over all the mistakes made and the opportunities missed. I think it is a common parental condition that comes with the autism spectrum diagnosis. I usually try to avoid talking about it publicly because I know my daughter hates to see me cry, not because she does not care, but because she cares too much. The diagnosis does not bring the tears in my case, the guilt does. All the years we failed to understand her and caused her life to be more of a struggle than it should have been bring tears.

Opportunities Missed: More Understanding, More Family Time, and More Travel

There are buckets of tears for opportunities that we missed, not for more therapy, but for more understanding, for more family time including travel that included consideration of her sensory sensitivities. The tears flow over the visits to Georgia never taken to visit my family after disastrous travel experiences due to our lack of understanding of transitional and sensory difficulties. I flew to Dad’s funeral alone when she was fourteen months old for this reason and to Mom’s bedside as she lay dying, alone again, for the same reason. I cry for all the times I failed to adequately explain to family and friends how much I wanted to be there and why I could not.

Others’ Lack of Understanding and Condemnation Including Doctors

Rivers of tears fall when I remember all the times I failed to protect her from others’ lack of understanding and from their condemnation of her and us. I cry for all the years we allowed doctors to treat her like a lab rat instead of a child with a big heart. I cry for the years we treated her differences like they are something to be ashamed of when they are not.

Seeing Her Heart

More tears for every time people have let her down and I have failed to call them on it. Many still do not see the heart of my delightful child who is now a wonderful teenager, soon to spread her wings as she blossoms into an exceptional young woman. I cry because I cannot get all those wasted opportunities back.

Cherishing Now

The best I can do is cherish the time we have today and hope and pray for more joy in her life in all of her tomorrows.  I encourage her as she shares her story, and I work to educate others so other little girls and their families benefit from our mistakes.  I work on forgiving myself and others, as I hope and pray for a future where acceptance and kindness are the norm regardless of people’s differences. I also pray everyday asking God to send his angels to watch over my family and to help heal the world.  I am grateful for the Delightfully Different Life I get to share and for the opportunity to educate others.

16 comments

  1. Sue,

    Please believe me when I tell you that from everything I know about your daughter’s story, you did everything right. When your family needed answers, you looked for them, and when the answers you received were incorrect, you kept looking. You didn’t accept explanations that didn’t fit simply because of the letters behind somebody’s name. The fact that you feel guilty over not having done even more is a testament to how much you care. I would have been infinitely grateful to have an advocate like you on my side growing up.

  2. I am with Ms.Grace. You are a wonderful person and mother!

    One wisdom I learned from my mother – “Umintindi ang nakakaintindi.” (Tagalog) This roughly translates to – The one with greater understanding must understand those who have lack of it. This helps me a lot!

    There will always be people who don’t understand or refuses to understand. Sometimes it’s simply because they don’t know how to understand. They don’t know how to receive new insights, or refuse to give-up their pride and ego. And those who are will continue to have lack of understanding. And because of this, expecting understanding from them will not be worth anything. And most of all because of this, they, too, need our greater understanding.

      • Charlotte,
        Thank you for sharing the words of wisdom and for you kind comments. I love your mother’s wisdom and it explains how you became such a wise and wonderful woman. The apple does not fall from the tree! 🙂

  3. As I read your blog posts I am always inspired about what a great mother you are to your children. When your daughter is grown I bet she tells you the same thing. Do you know how many mothers would have just become so frustrated that they would have become so ineffective that they would have never done what you have done? You are a wonderful person and mother so please remember that.

  6. Thank you so much. I know the guilt isn’t useful, and it’s supportive voices like yours that are getting me through it. This means so much. 🙂 Today is already a better day.

    • Cheairs,
      Yes, I know it is a guilt too many of us share and I have to stop looking back. My point in writing this is to let Alysia know she is not alone in looking back and wishing she had done something sooner. I am grateful my daughter is doing well, but I do wish I had acted sooner. I think it is a natural response for parents to wish they had responded sooner and to want to make all of the struggles go away. This is especially true when the diagnosis comes late.

  8. Just remember…when you were in the situation, you did the best you could with the information you had. You persisted to find answers, that would improve your daughter’s life. You never gave up on her, and I know you fought like a lioness to protect your “cub”. You faced ignorance and tried to make a difference….and you succeeded!

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