4 Comments

  1. fabricartsandmore
    August 21, 2018 @ 12:06 am

    Carrie, you always, always move me! Tears today, as I looked back on 21 years with this kid- 21 long, make a mama crazy years. My daughter is the 7th of 8. Less than 2 years in I quit homeschooling the kids. Twenty-one years ago we didn’t even know what autism was, we only knew that this kid was different from all the rest. A she neared 3, we heard about sensory integration, and the diagnoses began, strings of names and letters with a special code that we soon came to know, although we really didn’t understand. ADD, ADHD, PPD-NOS, Dyspraxia, Major Depressive Disorder, Autism Spectrum Disorder- I can’t even remember them all. It doesn’t matter. They were just grasping at straws, trying to figure out what made this kid tick. Then by middle school, epilepsy. Detentions. Medications. Placements. Hospitalizations for suicidal ideations. Finally, at around 18, one astute psychiatrist finally put a name to it: Borderline Personality Disorder. On top of autism spectrum. At least we knew what we were dealing with. This stuff consumes your life. One day when she was in middle school, an older daughter, who was in school in FL, wanted us to come for her pinning, after her first year of nursing school. I wasn’t sure we could do it. Middle school was really rough. And she said to me: “Mom, you have other kids. I want you to be here.” Immediately, I told her we would be there. And that is my point. You can’t let yourself be consumed by this. I know- it’s all day, every day. Oh, and I forgot to mention the Advanced Phase Sleep Disorder, which means that she is up for the day in the wee hours of the morning and so by late afternoon she is just done. Since birth. Carrie, you are so right. It’s hard to look at them as children, as people in their own right, because we are so concerned with the diagnosis, and for me, it’s always been about making her better, recovering from this unknown, life-sucking territory. She was probably 12 years old before I finally realized that she wasn’t going to make a miraculous recovery and be “normal”. And today, reading this- “He is whole and good and right.” I cried, because I’m not there yet, and I know that that is what I need to convey to her. But she won’t believe it, because that’s how BPD is- you never accept what anyone else says. You must always counter it, be contrary. My daughter can be quite articulate, when she’s not perseverating. Or in conversation, because BPD says you must always be negative, always contradict, and you are always right. And autism doesn’t allow you to reliably interpret facial expressions or body language, so you always read something negative into everything people say. Especially your mother, since she is the safe place, because Mom never gives up, never rejects, and almost never loses it. By the grace of God. So how do I look at her as whole and good and right when I know she is unhappy and confused about herself, that she does suffer from depression and sees the world through dark glasses. She is high enough functioning that she sees the differences between herself and her sisters, and she cries, wondering why she has this disorder, why can’t she be normal? I trust God. I understand and get this on a number of different levels. But she has rejected God. Why, I don’t know. But how on earth can I answer her? I say I don’t know, and try to pep talk her with stories of people with disabilities who are overcomers, who somehow made their disability work for them, rather than against them. I tell her no one is “normal”, that we all have strengths and weaknesses and gifts and inabilities. But it doesn’t matter. She only sees herself from her self-centered point of view, and she doesn’t like what she sees. And maybe she is sensing that I don’t like what I see, because I haven’t accepted that she is whole and good and right. I can only pray that God helps me to really see her as whole and good and right, and that He will somehow show her that truth herself. Thank you for sharing your life, Carrie!

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  2. Susan Swims
    August 21, 2018 @ 5:25 am

    I hardly believe that you didn’t cradle his head, or squish his chubby cheeks, or play with him on the floor. I just don’t believe it.

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  3. Lois Clark
    August 22, 2018 @ 10:47 pm

    I had a brother, Now deceased, a son and a grandson with this in varying degrees… It is so different for each one, and how it impacts the family. I can remember crying so often, but my son has managed to get a job, a girlfriend, and their own place, thanks to God. My grandson is struggling with it now, and school and the normal things in life like showers, and sleeping, but he is a good kid, too! It can be SO hard, but they are ours and deserve all we can give! Good Luck, AND MANY PRAYERS!

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  4. Debbie HIEMSTRA
    August 25, 2018 @ 3:05 pm

    I really enjoyed your article. I have a friend whose 28 yr old son is and has been very close to me for most of his life-he is severe,non-verbal but a wonderful person in his own right. He is a great guy. I have 2 grandchildren a 12 yr old boy who is not severe and an 11 yr old girl who is severe but slightly verbal and each of them is really great but different.

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