Living On The Spectrum

Today is Autism Awareness day. And all of April is designated to Light It Up Blue.


All over the world, you will see blue lighting up buildings to show they are advocating for autism.



A month ago, I would never have heard of this. 


Yesterday my younger daughter, mother of Andrew, emailed to tell me that today was the day. Autism Awareness Day. I was touched that she knew.

We are patching the rough spots in our mother/daughter relationship, and Saturday I will get to see Andrew.

Funny how much can change in a month's time. 



This week I went out on Monday, Tuesday and Wednesday. Only Monday was planned. This is almost unheard of for me. Tuesday and Wednesday I went out on a whim. 

I felt rather celebratory for having done so. I had taken a few steps toward normalcy and breaking out of my self-made prison.

Yesterday I went to Barnes & Noble, gathered some books from the Bargain/Clearance section, and sat on the floor with them. One book I chose was called "Memoirs Of An Imaginary Friend." I started reading it last night. 

It is about a young boy with autism. But the narrator, the main character, is the imaginary friend who protects him from a world that he can't handle alone. 



Every morning I go out with the dogs and my camera and look closely at everything in the pots. I look for little bits of green that perhaps wasn't there the day before. 

I look up into the trees, which are leafing out quickly, and try to pinpoint the birds I hear.



I think back all those years ago, when I was a little girl, writing down words from the dictionary into a notebook. I would choose the word based on instinct. 

For instance, "anathema" would have been a word I chose, writing it down neatly with my pencil, and then the subsequent meaning. 

And though I didn't fully understand its meaning, I liked the word because it had soft edges, if that makes sense. 

The spelling indicated a word that, if it had been a stone in a river, it would have been cleansed by many a current, year after year. The stone would be soft to the touch and shiny from the daily water sluicing over it.



"On the spectrum" is something you hear often with autism. 

As that child writing in my notebook, I would never have chosen the word "spectrum", because it sounds clinical somehow. 

Harsh, just the way it is spelled and sounded out. I would have judged it by this. I would have turned the page looking for another word.



Living in your head, sometimes totally unaware of the world around you but for the sounds that hurt your ears, these things made sense to me. How to choose words that for some reason appealed to me, even if I did not understand their meaning. 

Just like I know how to be quiet and watch others. 

Sometimes I would see a child being mean and hateful to his/her mother. And I wanted to go jerk the child aside and say: "You have a mother. Be nice to her. She will look out for you. And every time you say Mom, she will turn at the sound of your voice."



Sometimes I will be in the middle of something, and I will freeze. I have suddenly forgotten how to do something I've done hundreds of times. I will have to wait until the mechanics come back to me. 

The more uptight and anxious I become, the longer it takes to break through.

Somehow it floats out of reach. Until time brings it back to me. 



I think I have been able to go out more because I know what the problem is now. And though going out often makes it worse, it is reassuring that I have the answer symbolically clutched in my hand. Where before I just thought I was somewhat stupid and possibly worse. 

Having that answer clutched in my hand gives me a certain strength. It tells me that my brain is simply different in the way it processes things. And not understanding that, I've shamed myself for it all these years. 



I've hidden things I can't begin to do from others. Ashamed to tell the truth. Like not being able to, at the end of a work day, balance a register. No matter how many times they would try to teach me, they might as well have been speaking a foreign language. And I'd quit the job because I knew I would soon be fired anyway.

I have been judged for these things, often very harshly. Why couldn't I just hang on to a job? What was wrong with me?

I've tried for weeks, sometimes a few months, to handle what other people do every work day, without alarm. Like greet people on the phone. And even worse, when they walk in the door. 

I felt so utterly exposed during those times, and before long I would have a sort of melt down from all the sounds and expectations and leave, never to return. But inside, I would be telling myself I was just stupid and couldn't learn.



I want my children to know that I tried. I really did. Tried to be a good mother. A normal mother. 

How many times did I hear the familiar refrain: "Why can't you be normal like other mothers?" "Why can't you talk like normal mothers? They don't use such big words."

Oh, but the words have been with me for so long. Ever since I wrote them down ever so neatly in my notebook. I would sound them out. And hope that one day I would find a use for them. Because words didn't make me anxious, like numbers did.

I really tried to be like everyone else. I just couldn't manage to do it. And I hope my girls will forgive me that. 

I haven't felt a lot of things I think most people do, and I've felt other things I think others never have. But I felt true love for my children, even if I wasn't able to adequately show it. 

I wish they knew that. I hope they figure that out. 

I hope they can forgive me that transgression. So that maybe, possibly, I can forgive myself.




66 comments

  1. Beautiful post, Brenda. Very heartfelt. I'm so glad you can rest in being yourself more now and that going out is more comfortable for you since you received your diagnosis. <--- Now there's a word!

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    1. "Diagnosis." I would have written that word down. It is not harsh to say out loud. Doesn't matter what it means. It's how the word sounds.
      Brenda

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  2. Hugs Brenda. Your sharing is important. You are a writer with the words that touch the heart.
    Joy

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  3. My dear Brenda. The not knowing is always the worst part of anything. I, myself, feel relieved for you now that you know what's going on with "Brenda".
    I'm so happy that you'll be seeing Andrew on Saturday. This will be a special Easter for you I'm sure.
    I love the picture that you took of the "underneathy" side of the bird. So cute. Your patio garden is looking beautiful.
    Wishing you so much happiness and many good times !
    Hugs, Charlotte

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  4. I'm so happy you have a voice now for these things, and I hope it helps your daughters understand. Your post made me cry for the past but hopeful for your future.

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    1. The past is gone, round the corner out of sight. But now so many things that confused me makes perfect sense. It's kind of like looking into one of those visual puzzles, and finally making out what the shape is. You wonder how you didn't figure it out long ago. It was right there in front of you.

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  5. Thanks for sharing. I try to talk to my grown kids once a week just to let them know I love them. And we get together every few weeks for a meal and catching up. Never for a full day , just a couple of hours but we laugh and talk about their jobs and dates and dogs and, privately, problems they've had. I love it and cherish those short visits.

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    1. You are truly a lucky woman to have that time with them.

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  6. Knowledge is an important stepping stone in overcoming almost anything that paralyzes us. I know it helps me, and it sure seems to be helping you. It's to bad you didn't know earlier in your life, but now is better than never knowing. Lots of life to live, and others to share it with. Good for you!

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  7. Your beautiful post brought tears to my eyes Brenda. I'm so happy for you that you know "the why" -knowledge is power.
    Have wonderful visit with your daughter and grandson!
    Jeannette

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  8. Your post is so inspiring. It made me cry. I am cheering you and your family on!!! Hugs.

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  9. Brenda, you have spent so many years beating yourself up for something that you can't help. I am so happy that you are more accepting of yourself now. You are a wonderful person and write beautifully. I hope your daughters will learn more about your condition and come to understand you have done the best you can. Seeing Andrew this weekend is such a blessing!
    hugs,
    Linda

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  10. Wow - good for you going out on a whim - now there's a good word for your notebook. Sometimes the whim moments can be the best. There are no expectations, but you just go where your heart leads you. I love those times of refreshing. Glad you are getting to see cute little Andrew and your daughter.

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    1. "Whim" I probably did write down in my notebook. The word is smooth with no angular edges. It is soft when you say it.

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  11. Wonderful post!
    I wonder if you would share it with your daughters? Enjoy your time with little Andrew.

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    1. I shared it with my younger daughter. I told her if she thought it would help, to send it on to my older daughter. But if she didn't, then not to. So I doubt that she did.

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  12. I love the blue lights, Brenda. We put out blue lights here to honor our policemen. Kind of the same idea---a protection that surrounds us.
    This is a wonderful post. I would hope your daughters would read it. Maybe then, they will finally come to some understanding of what your world is like;has been line for you.
    We do have one more thing in common-when I was younger I used to read the dictionary for fun. I, too, love words and use what are uncommon words sometimes when talking. They are as much a part of me as my hair is---we are old friends-those words and I.
    Have a blessed day! xo Diana

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  13. The photo of the tulip reminds me of a peppermint candy. It's so pretty I actually gasped when I scrolled down to it.

    I imagine that if doctors examined each of us thoroughly enough, they'd find something to diagnose, label us with.

    So, Brenda, so what if you can't balance a register or get discombobulated greeting people or answering phones at work. I know at the time it was a big deal as you wanted to do well at your job, but you have such talent with writing and photography and using color and decorating. Very artistic things.

    I have lots of anxiety about different driving situations so I was totally in awe of you when you and the pups drove all the way from Texas to Oklahoma. I couldn't imagine myself doing that in a million years. You are so brave.

    It's nice to hear you've been getting out more as that must mean your foot isn't giving you much pain. I'm a real homebody so I know how tiresome it is when people bug you to get out more so I am not doing THAT. I am just happy you seem to be feeling better.

    Funny how words feel different to different people. Spectrum always makes me think of rainbows. So when I saw your headline today, I thought the post was going to be about colors.

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    1. That trip with the dogs from Texas to Oklahoma instilled such agitation in me I got lost and had to call someone in my old neighborhood to help me find my way out of the mess. I doubt I've ever driven anywhere over 20 miles that I didn't get lost at least once! So I was very proud of myself that I actually made it, albeit late due to the getting lost.

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  14. Beautiful Brenda! Love and forgiveness are decisions we make, we can choose to love or not to love! We only live once and it's not worth holding on to disappointments, they rob us of joy and peace, so not worth it.
    Blessings sweet friend!
    Cindy

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    1. You're right. You have to live in the moment to know peace.

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  15. Oh Brenda, this post brought tears to my eyes, especially the paragraph about telling the boy to be nice to his mother. How true is it that mothers everywhere relish the sound of their child calling them.

    You have to forgive yourself. You did the best you could, and my heart tells me your girls will eventually understand. I hope Andrew will be your 'second chance'.

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    1. Ah, music to my ears. My second chance. I wanted parents so badly when I was a child. I thought it was truly awe-inspiring when I heard a child on the playground call out "Mom" and someone actually turned at the sound of the voice. I so wanted that.

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  16. Such a beautiful, moving and HEALING post.

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  17. Thank you again for sharing your experiences with us. I remain certain that through you more of us will be ever more tolerant and understanding of those around us who navigate this world differently. Each of us can be kinder and accepting. I am so happy that this diagnosis is helping you to accept yourself and to be a bit braver as you venture out more. I am hopeful that your children will heal as well by understanding your diagnosis, may your relationship grow and may you feel all the love that is certainly there.

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    1. I share because so many email and ask me to. I share to heal. I share to help others who are different and don't understand why. I share so that you might help them.

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  18. I am so happy that you are taking steps to move forward in your life. You are a brave and special woman to share it all. My nephews son has autism. I am glad you reminded me of Autism day. xo Laura

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    1. I didn't even know there was an Autism day till the past month myself.

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  19. LIVING on the spectrum......with emphasis on LIVING! Forgiving ourselves is the hardest thing for moms, but you owe it to yourself, especially now that you understand yourself better.

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    1. Been doing it a long time. Will take an effort to stop blaming myself automatically when things go wrong.

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  20. Spectrum- used in the field of optics to describe he rainbow of colours in visible light.
    Let your colours shine!

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    1. Well, I've got a lot of colors going on around here! Remember the orange door incident? I've got purple and green and turquoise and red and yellow gold and... Maybe that's why I love color. They're all different and no one cares!

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  21. This is truly a soul-baring post. Your readers all have great affection for you and cheer you on in your newly-understood life. I think I mentioned this before, but I'll repeat it. It's my feeling that you have a very inspiring book in you and it just needs to get onto paper. You have so much to offer to others who are struggling with autism as an adult. I hope you'll think about becoming a published book author--you already have all of the writing skills!

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    1. I would write a book. But before I invest myself in it, I'd like to maybe find someone to talk to who knows more about this type of thing.

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  22. Oh Brenda, this post is beautiful! You have such a gift for making a reader not only understand, but feel. I had tears in my eyes. I am so sorry you had to go through life without a diagnosis; always thinking you weren't smart enough; always feeling different. I can't imagine how difficult it is to raise children when you not only have this disease, but don't even know that you have it. I'm saying a prayer for your renewed relationship with your daughter. I am wearing blue today and to the Maudy Thursday service at church tonight. One of our grandsons has Aspergers, and your words touched a tender spot in my heart. Thank you so much for this post. (P.S.: Your photos are also beautiful).

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    1. It's late in the game to get that diagnosis, but I guess better late than never!

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  23. Brenda ..... I am wiping tears from my eyes, I can so relate to your words because one of our our family is autistic. The struggles have been immense but we support and get through the good times and the not so good times.

    Heartfelt thanks for taking time to write this post - your pictures are so lovely too.

    All the best Jan

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    1. What's been hard is getting through the struggles alone. There was no one who understood because of going undiagnosed.

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  24. Beautiful post that brought me to tears. I hope your daughters read this over and over so that they may begin to have compassion for what you have lived with for so long. You are so brave to share this with all of us. I hope your daughters can begin to see you with new eyes and really open their hearts to embrace new relationships with you.

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    1. You and me both. I so hope it gets through to the one I haven't seen in over a year. Or for that matter, I haven't seen her children in a year and a half.

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  25. Well done! Well done with everything, and especially the bookshop visit, where you found Buddo, the imaginary friend. I loved that book so much when I read it for review, and I hope that you will too. I am rooting for you all the way in your journey.

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    1. Buddo is sure an interesting little imaginary character!

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  26. Beautiful post Brenda. It helps me to understand what autism is really like...I hope your daughters will read this...it might help them too. Glad you are getting out more...sounds like you are armed with a new found confidence that comes from knowing who you are. ;)

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    1. It's hard to tell people who try to explain, with much patience, how I am to get from Point A to Point B. I just can't retain the information and formulate it to work.

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  27. Brenda,
    You are gifted in so many ways! You have been so busy focusing on what you've felt were 'shortcomings'. I love that ive stumbled onto your blog. Please read all the previous messages here. You are everything each writer has said about you. Marvelous comes to my mind.

    I'm also of the mind that knowledge is power. I've lived through my daughters becoming angry with me because I didn't fit the mold of a 'perfect' mother. I was too weird and quirky for their liking. A constant refrain was, "why can't you be like all the other mothers??"

    I'd get upset and frustrated with myself but finally made peace with myself and would say "I'm sorry I can't be all that you want me to be but I'm am just being the person I was meant to be. This IS me."

    They understand I'm ADHD (and heavy on the hyper part!!) and my brain has other issues too. Numbers? Yikes! There is no way I can deal with more than straight forward addition and subtraction.

    Luckily for me, I found a man who lovingly understands all my quirks and can help dig me out of holes when I get trapped by mathematics.

    I think my own issues are what lead me into teaching special education. When I sense my students are beginning to 'beat themselves up' because they're feeling less than perfect or 'not smart', I know it's time for me to change course and build up their self-esteem up by engaging them in all the activities they do so well.

    Heck! I've yet to meet a perfect specimen of a human being. We're all different. We all have some weaknesses or things we're not Olympians at doing but I really believe we all shine at something.

    You're obviously very bright and a good student of human dynamics and interactions. However else could you make the astute observations you are able to make and record in your writing?

    An ASD diagnosis tells us social communication will probably be difficult for a person. Perhaps face to face communication is more problematic for you because of the usual requirement of providing an instantaneous response to the other person. Writing allows you the time to formulate your thoughts and then choose the exact words you need to use to express exactly what you want to say! I love your way with words!!

    Your gardens on your patio are so beautiful! Our snow is alllllmost completely gone here but the air is still very cool and the skies are gray today. Your flowers and Mr. Robin give me hope that spring will soon be arriving here.

    Here's a symbolic hug for you. ((Hugs)) I'm aware that not all of us are really huggy types. I'm one of those people but it's not because I don't like/love someone. :o)

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    1. I commend you for teaching Special Ed. My second husband tried it for two years and just couldn't handle it. It takes a special soul to understand and teach and have compassion for those children.

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  28. Thanks for sharing your heart Brenda. Hoping and praying it helps your relationship with your daughters. I started following a blog a year or so ago written by a lady with two autistic sons. She really has a gift for writing and photography so I though you might enjoy her perspective. www.lifewithgreyson.com

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    1. Thank you! I shall go look her up.
      Brenda

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  29. I read this and I was so delighted to see that you are venturing out more into a world that can be so scary and hard to deal with. I too believe that finding out what was wrong has helped you to emerge like the new bud on the trees. I am so happy for you!

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    1. At least now I know I'm not just a person who can't retain or learn things.

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  30. Brenda, such a beautiful, heartfelt post. You are the most amazingly gifted writer, your words paint such a vivid picture. I am so happy for you that your relationship with your daughter and grandson is growing. I know that has to make your heart smile. Hoping that your other daughter will soon be able to open her heart and mind, again. Wishing you the very best in all of your future adventures!

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    1. Yes, little Andrew is a very special little boy to me.

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  31. Brenda...once again you have written from your heart...in an effort, I think, to put together the pieces of the puzzle that you now are. These are things I would have only written in my private journal but you should be applauded. We understand you better and you are giving everyone valuable information.

    I'm so glad that you are getting out more, just blowing with the wind...the freedom must feel incredible. And Brenda, honestly, I think so many of we mothers have heard that line about being like the other "normal" mothers. I know I did. I'm really happy that you reconnected with your daughter and her family.

    Jane x

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    1. Thanks Jane. I have long admired your relationship with your daughters.

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  32. Brenda…your blog is one of 2 I look at nearly every day. I appreciate so much about your creativity and your honesty and your willingness to change when that has been required. And your very recent diagnosis has seemed to give you insight that is really helping you, which is is amazing. As you have said, it has clarified and explained and helped you understand yourself better, and hopefully, will help others understand you better also. I consider you a special cyber friend, even though that sounds very strange to write.

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    1. Thank you. My readers, they are the best!

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  33. Hi Brenda, Your post touches my heart as you share the tender parts of yours. I hope your daughters read this and find understanding and forgiveness within their hearts. It will be so nice for you to spend time with Andrew and perhaps knowing yourself better through your diagnosis, will give you strength to be the special grandmother you are. Your posts, sharing all this info and honesty about yourself is helping someone more then you know.

    Wishing you a wonderful evening!!
    Hugs, CM

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    1. I hope baring my soul does help someone else. To get a diagnosis. To accept what is. To move forward with positive goals.

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  34. I had tears running down my face after reading this post. I am so happy to hear that you and your younger daughter are seeing each other again this weekend. And that you are getting out more! These are big steps forward and there are many more to come. Your patio is looking good!

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  35. I know. The patio was just barren up until the past two weeks. Then it just took off.

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  36. Yes this is another terrible childhood disease lots of us parents and grandparents have to deal with.
    It's just so sad to see my Grandson page 12 ) struggle with this horrible disease, he cry's because he knows something is wrong with him. Kids at school makes fun of him, this is soooo sad for me
    He a form called aspers I probably didn't spell it correctly

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  37. I'm so glad you are able to get out more and that things are better with your daughter. I truly hope you can stop blaming yourself for everything that goes wrong. Bless you! Enjoy your visit with your grandson!

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  38. Aww Brenda I hope you realize we all have different crosses to carry. You're just being more honest about your's. I'm not minimizing your pain at all I just mean you'd be surprised to know how many people can relate to learning how to overcome different challenges. I believe that has a lot to due with alcohol abuse and obesity. Many self medicate out of desperation. You're much stronger than you may think. Once you make peace with you're children....the best you can...then you're life will be complete.

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  39. Hi Brenda. Even before you said it, I had a feeling that your new information about autism was helping you to feel less burdened, and able to go out and about more freely. I'm struck by the fact that you used the phrase "self-made prison." Sometimes we have a lot of things that happen to us that eventually causes us to isolate ourselves. It can seem like a good move for our protection, but yes, it can become a prison. The only way out of the prison, as you have discovered, is to search for and find a key. You kept searching, and you found a key in the form of a diagnosis of autism. Now that you have this information, you have been able to unlock a door and explore more of life. That took a lot of courage and determination. I'm very happy for you. Your new knowledge and outlook will help yourself and your family.

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  40. No mother is perfect. God knows I wasn't and neither was my mother, her mother and her mother before her. Obviously I wasn't there and being raised by you, but I can tell just from what you write that you loved your girls very much. Some children never have that love. I hope you forgive yourself, my friend.

    I'm glad you're getting out more.

    (((hugs)))
    rue

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