(Because this post is too long,  I am going to split it into 2 parts, one now and one in a few days. I don’t want anyone out there reading to get bored, you know!  If you want to be sure to read the second part, please click on “E-mail Subscription” on the side of this post and put in your e-mail.  Then, the 2nd part will be delivered right to your front door, like a newspaper!)

I happen to be blessed (?) with two sons who do not feel pain normally.  It took me a while to figure this out.  I  knew when I took them to the playground when they were three, four and five years old, they would run around, fall, trip and bang into things as much as the other kiddos did, but they never came up to me crying, like the others did to their moms.  I actually thought how lucky I was that they weren’t “whiney” like the other little ones, whom I considered to be “wimpy”.  As the boys have aged and accidents have happened, I have learned that the fact that they never came crying to me over little hurts and bruises was a sign that they did not FEEL the little hurts and bruises!

Steven, who was born addicted to heroin and cocaine, has always had “wiring” that is abnormal.  He has had a lot of diagnosis; ADHD, OCD, ODD, BPD, autism, Asperger’s, and sensory integration deficit, but to me it all boils down to the fact that his nervous system/brain developed in the embryonic fog of a drug addicted, alcoholic birth mother.  Like many children diagnosed with autism, he has severe sensory integration deficit.  When he was younger, he would throw himself on the floor, cry and bang his head if there were a tag on his shirt or if the seam in his sock were crooked. Light touch actually HURT him.  I remember taking him in the grocery store with him sitting in the baby seat when he was about 2 years old.  If I absent-mindedly gently rubbed his little arm, he would scream and yell “STOP HURTING ME!” (to which I would slink away hoping no one in the store heard or noticed…)

Steven cannot tolerate being touched gently, but he loves deep, hard hugs, BEAR hugs.  These feel good to him.  This “wiring problem” (as I affectionately call it,) impairs his ability to realize if he is hurt.  The best example of this was one summer day when we were cleaning out the freezer.  It was one of those old fashioned freezers where frost had built up all around the inside.  After I scraped it out, we took the slush outside and thought it would be fun to make snowballs out of it.  There we stood in the front lawn, throwing snowballs at each other in the 80 degree heat!  Steven got hit in the eye with one, but quickly brushed it aside and threw another one back. We had great fun, playing until the “snow” had melted.

The next morning, Steven woke up and his eye was bright red and swollen.  He did not complain of any pain, but I still  I quickly called an eye doctor whisked him off for an exam.  While at the counter registering, the receptionist asked me how it happened.  I told her he got hit in they eye with a snowball.  She stared at me for a long time, so I gave her the cleaning out the fridge story.  Again in the examining room, the assistant asked me how it happened.  Snowball again.  She wrote it in his chart.  “Hit in eye with snowball.”  It was August, and it was pretty funny.  When the doctor examined his eye, he was incredulous that Steven was not shrieking in pain.  It seems that a piece of ice had scratched off pieces of his cornea!  It is supposedly very painful, but did not faze Steven in the least.  He was sent home with cream to put in his eye every several hours and he healed up fine.

Angel, on the other hand, does not feel pain because he has Dissociative Identity Disorder.  In layman’s terms, this disorder developed because he was so badly abused as an infant and toddler that in order to protect himself, his brain split off into “parts”, with one “part” absorbing the pain of the abuse to keep the other “parts” safe. This was a coping mechanism he developed in order to survive.  (Of course, when he was younger, we were unaware of this diagnosis.)  One day, when he was about four years old, I went to pick him up at pre-school.  The teacher told me he had been pushed off the top of the jungle gym by another child and that he may have hurt his hand because he was holding it a little funny.  He was not crying and did not complain of any pain, but I decided to zip him over to the emergency room anyway to have it checked out. He smiled at the doctor who examined him, and seemed to enjoy the attention.  When the doctor examined his hand, it was obvious that the problem was not his hand, it was his entire shoulder and arm.  They did an xray, and we learned he had broken his shoulder!  Again, the doctor questioned how he could possibly not be screaming in paid, and especially how he could have managed to spend the day in preschool!  At the time, I did not know how it was possible either!

These are just 2 instances where Steven and Angel were hurt and did not acknowledge the pain, but I was able to witness this phenomena several more times, episodes which I will share with you in Pain is All Relative, Part 2!

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Comments on: "Pain is In the Eye of the Beholder…Part 1" (22)

  1. WOW, just amazing… it must present challenges when trying to determine how hurt they really are!

  2. I have a high tolerance for pain but nothing like that. I’ll bet you had to take them to the dr. or the er a lot just to rule out anything serious since it would be hard to judge the severity of their injuries based on their reactions.

  3. This made me weep, that these kids were so badly abused (in one case, before he was even born) that their bodies built these incredible defense mechanisms.

  4. ntexas99 said:

    In one way, this is a beautiful testament to the human spirit, in that humans are capable of withstanding seemingly every kind of assault. Their bodies learn to continue functioning in whatever way possible. Adaptability kicks in automatically, and they learn how to survive.

    Of course, it is also heartbreaking to see such human examples of the long-term consequences of abuse, whether it be physical, psychological, emotional, or chemical abuse. These kids began their journey with a pre-determined set of challenges, and learning to overcome these challenges is something that can take years to master. So much energy is spent overcoming the challenges that sometimes “being a kid” gets lost in the process.

    It is encouraging to know that at least they were raised in a home that was about showing them love, (in whatever form they could accept), and was about keeping them safe from harm, (in whatever way was appropriate for each specific child). Your stories always warm my heart, and sometimes they break it into little pieces, too, but one thing always stays the same … I’m glad these kids found their way into your life.

    Your own particular brand of honesty, information, humor, and insight bring these stories to life in a way that allows the reader to get a genuine glimpse into the life of raising a child (or several) with disabilities. Your stories have changed how I look at other mothers and fathers and children now.

    I no longer assume that every child throwing a tantrum in the grocery store is simply a bratty little uncontrolled and undisciplined child whose parents didn’t bother to take the time to teach the child how to behave in public. Of course, this could be the case, but it could also be a child who is simply unable to process their environment because they were given a set of challenges that make it difficult for them to behave “normally”. You are helping re-define what counts as normal behavior. Normal for whom? Pain truly IS in the eye of the beholder. Well stated.

    Thanks for opening my eyes and heart a little wider. Your writing is truly an inspiration, and thanks for sharing your stories. I imagine one day you’ll be writing a book about some of these stories, and I can imagine that book bringing inspiration and a new way of looking at things to many people. Your words touch the lives of others, just as your actions have touched the lives of those children.

    • 5kidswdisabilities said:

      I actually have written a book, but I’ve sent it to every possible book agent who might be interested and, alas, no “takers”. So, I have to be content with writing this blog!

  5. Wow… That must be hard to know when they are really hurt. I love your attitude and obvious strength. Thanks for stopping by my blog!

  6. It is unbelievable how their little brains re-wire themselves to protect what should never have happened to them in the first place….

  7. Thank you so much for sharing this story.

    You truly are a testiment of the power of love.

    Bless you, dear lady.

    And I agree with ntexas99, your writing is an inspiration. And if should write a book, it will without a doubt open the eyes and hearts of many!

    Again, thank you.

    Enjoy your weekend.

  8. I did not think that was boring at all. In fact, I think it is fascinating how the brain develops, or doesn’t. The coping mechanism of your first son is really amazing. And, wow. That would have been so challenging to have diagnosed, and then to live with. You must be an amazing mother!

  9. Kirsten Lesko said:

    OMG, I do not know which story breaks my heart more here. I am just aching for these little peanuts.

  10. I agree with Ron and ntexas99. What in inspiration. I’m so glad that you’re sharing your story! I look forward to reading more.

    Thank you, also, for visiting Mother Words.

  11. I too look forward to reading the rest.
    I have been telling doctors for years that I do not feel pain as others do. They look at me as if – “Yeah. Sure” When I had knee replacement surgery years ago, I woke with a morphine drip going. I was so sick from it I made them remove it. they kept telling me I’d be in terrible pain – but I never felt a thing. when I had angioplasty five years ago, medical people kept asking me how long and how bad the pain had been. I never felt any. etc. It can be a bad thing not to feel pain. You have no warning when something is wrong.
    I do not have the extreme problem your boys do. There have been times when I have had severe pain.
    I never before knew there was a name for it though.

  12. I am a Special Ed secretary, and even though I don’t work with the children…I do “know” some of them through paperwork, phone calls and meeting arrangements. These children never cease to amaze me, nor do their parents. I enjoyed reading your post today and will definitely be back.

  13. My autistic son CJ scratched his cornea when he was about 11 months old. This was way before his diagnosis, but he never even cried about it. We took him to the doctor after a few hours because the eye was still red and kept weeping. He had an eye patch and drops every few hours and they told us the same thing…that its a very painful injury but from him, no sign of discomfort. Oddly enough, when his brother, who has ADHD scratched his cornea in 1st grade, he made it through a whole day as well. The only reason the teacher figured it out was because one of his friends pointed out how bad his eye looked and they sent him to the nurse. He never cried over it either.

    Great post.
    ♥Spot

  14. Lindsey, this is an amazing story. It wrenches my heart to think of children who suffer through these disabilities because of their mothers. These kids are so lucky to have you in their lives.

  15. I think you are all lucky to have each other. 🙂 Thanks so much for the visit to my blog today!

  16. You are my hero. And you write your and your children’s story so well. I look forward to reading more.

    Peryl

  17. Kids are truly amazing and especially kids like yours who have learned to take care of themselves it these ways, even though it was from situations they should have not been exposed to it is a blessing they have you now and that you have the sense to understand their needs and and how they cope with pain.

    Thanks for sharing

  18. Thank you for sharing about your boys and how you must be vigilant to keep them safe. Blessings and ((HUGS)) to you and so nice to meet you in blogland. I appreciate your visit and look forward to reading the rest of your family’s story.

  19. Lindsey..I do believe you are an angel on earth. What you are doing for your children, providing them with a loving and stable environment is more valuable than I think you even know. You are giving them a place where it is okay to feel pain. Of course we never want our children to experience pain. We try our hardest as mothers to see every obstacle and cushion all the blows for our kids. But in your case, you are giving them the love and security to make it okay for them to feel pain. Do you think Angel will ever be able to join the two halves of himself and become whole again? I think he will with your love. God bless you…I mean that from the bottom of my heart. I can honestly say I would never have the strength of character to do what you are.

  20. What are the ages of your children now? Were some adopted? I know I may be getting too nosy.

    Apparently that’s why our grandson likes the hugs his uncle (our son-in-law) give him. He gives him big ole bear hugs and lifts him off the floor at the same time. He will now come up to the rest of the family members, and stand there, but you have to hug him, and I give him a kiss on the back of the neck. He just turned 11 in Dec. His Mother and him moved back to Ohio about four years ago. She was 40 when she gave birth to Noah. She’s also home schooling him. She’s tried the public school but it just never seemed to work out.

    I salute you and your courage rearing five with disabilities.

  21. You and your family are amazingly strong. I’ll look forward to Part 2.

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