I haven't been blogging much; time has been slipping away from me and I just haven't had the chance to sit and write, however I've got something on my mind and I know it'll be good to get it all out :)
The other day at my chiropractor's office, the chiro, massage therapist, and a client were having a discussion about things that bug them. As it inevitably does it turned into an "oh my god my ocd..." type conversation. OCD, you know, obsessive compulsive disorder; the disorder that movies have shown as someone having to wash their hands or count things. Clearly OCD is being annoyed with little things right?
Overheard conversation
"omg, I am so ocd about my microwave timer. If it's not at zero it really bugs me"
"me too! or if I find dishes in the sink after I've washed them! ugh! ocd right!?"
"ha ha, I have you all beat, I can't handle the shoes being out of line at the door, I totally have to straighten them or it'll drive me crazy"
All of these things are NOT OCD. These things are annoyances. These are things all of us dislike (to a certain extent and you can substitute whatever word you'd like instead of shoes: dishes, blankets, whatever) but they are NOT OCD.
What, pray tell, is OCD then?
Let me give you an example.
You're nine years old and go to the grocery store with mom. You've managed to turn in all of your homework on time that week and as a result you've got five bucks to spend. You've been collecting baseball stickers for weeks and every single pack you've bought you've bought with your own money. You're so excited to go to the aisle you've gone to every single week for a month to pick out the packets of stickers. You tell mom you'll be right back, you're going to grab your stickers like you do every week when you come grocery shopping. So you confidently walk to the aisle where the stickers have been every single week for the last month and....they aren't there. You look high and low in that aisle and you can't find them and the panic sets in. You can't think; you get stuck. You look and look and finally, after starting to get concerned, mom finds you and you're in tears and you can't stop talking about where the cards were and how you can't find them and now what. Mom finds them an aisle over and you get your cards and all is right in your world, right?
No, it's not. The whole way home you talk about the cards being in the wrong spot, you talk about how you can't believe they'd move them. Mom and sissy tell you they are sorry that they were moved but now you have them, so concentrate on seeing which ones you have and which ones are duplicates.
But you can't, all you can think about is how the cards are always in the same aisle and they were switched today and then all of the sudden the same feeling you had standing in the wrong aisle kicks in and you feel like you can't breath and maybe if I talk about it again it'll make more sense. So, hey mom why were those cards in the wrong aisle? why would they switch them? who do you think switched those cards? weren't they even thinking that someone might be looking for those cards and when they couldn't find them they were upset?
By the end of that day, you're exhausted; all you wanted was the damn baseball stickers but they weren't in the right aisle and as you fall asleep you ask mom again why someone would move those stickers...and you hope that in the morning you don't have to worry about the aisle again because you are so tired and you don't want to think about it anymore.
THAT is OCD. THAT is not an annoyance; that is a panic inducing, physically and mentally exhausting OCD attack. That is what OCD is, not the microwave timer being at 4 seconds. Not your shoes being out of order. With those things you fix them and you on your way, you aren't worried about the timer being at four seconds because when it's zeroed out you're fine. When your shoes get straightened up, you don't have a full blown panic attack thinking that someone may have moved them while you were out of the house and holy shit what am I going to do and all you can think about is straightening up those shoes the second you walk in the door.
We've been pretty successful in eradicating the R word; we know that it's belittling to those who truly have mental or physical conditions that make them "retarded" in the medical sense...why is it still okay to use things like "ocd" or "a tourette's moment" or "spazzing out" to describe your behavior when it's CLEARLY not any of those things, it's just something that bothers you or it was something you shouldn't have said or done.
We have a mental health problem in this country and it's that those suffering from mental illness can't openly talk about it because we have everyone else using medical terms to describe every day stuff. You can't openly talk about your severe depression because "oh everyone gets depressed sometimes, just shake it off" You can't talk about the crippling panic attacks you have going to the grocery store because "it's all in your head" You can't talk about the fact that your lips are severely cracked because your Tourette's syndrome makes you compulsively lick your lips because "shit fuck damn HAHA HAHAHA Tourette's is so funny right!?"
Words have power; they can heal or they can hurt...please be aware that when you throw terms around like that you can be hurting someone; someone who is already hurting because they are dealing with that very thing every single day. Use your words to heal and help not hurt and tear people down. As the saying goes "Be kind to everyone, for you don't know the battles they're going through"
Showing posts with label special needs parenting. Show all posts
Showing posts with label special needs parenting. Show all posts
Friday, June 7, 2013
Thursday, April 22, 2010
This Lovely Life
Recently Ellen at Love That Max posted about a book called This Lovely Life by Vicki Forman. It's about a woman, Vicki, who gives birth to super premies, Evan and Ellie and their battle for life. Really, though it's not about the babies, it's about the momma, Vicki.
I don't read a lot of books about special needs children or the things our families go through, because quite frankly, we live it every day, why would I want to read about it? :) Something about this book drew me in from the get go and still has a hold on me.
I found myself crying through most of the book, something I didn't think was possible; I read through my tears, reliving some of the most heartbreaking times in my OWN life while reading about hers. After reading the epilogue, I cried for a good five minutes; heaving heavy sobs; heartbroken sobs. I feel so connected to this woman and what she went through for her children.
I related on two levels: First on the plain old momma level-as a mother I've always wanted what was best for my children; regardless what that meant for me. Vicki was fighting (along with her husband) for what she thought was right; she had opposition at every turn yet still plunged ahead, doing what was best for her family.
The second level, the special needs momma level, was what had me crying. Scratch that, it's what had me sobbing As Vicki talked about the smell of the harsh soap in the NICU and pinning her rings to her chest as she went to the NICU, I could VIVIDLY recall the sixteen days we spent in the NICU. Sometimes when I go somewhere and they have the same soap we used when Gabe was in the hospital, I get nauseous; the memories flood back with something as simple as soap. Ridiculous...yet, that's how it is.
Vicki fights against the multiple disability labels she is sure to get for Evan; she does NOT want the labels, she keeps thinking that Evan "might" beat the odds, that the statistics won't apply to him...and damn did that hit home hard. I remember bargaining and praying and pleading that Gabe wouldn't become a statistic; that his spina bifida would some how be "different" from what the statistics and facts say it would be.
Overall, this was a heart wrenching, sad, reality based book that somehow managed to be positive and uplifting in the end. At the end of the book, I wanted nothing more than to find Vicki and give her a giant hug. I don't know if I'd recommend this book to anyone, to be honest. It was a very hard read, very gut wrenching at times; it raised moral questions that some may not want to deal with. It was tough, but I'm glad I read it; I feel richer for knowing Vicki, Ellie, and Evan's story.
Find it here
I don't read a lot of books about special needs children or the things our families go through, because quite frankly, we live it every day, why would I want to read about it? :) Something about this book drew me in from the get go and still has a hold on me.
I found myself crying through most of the book, something I didn't think was possible; I read through my tears, reliving some of the most heartbreaking times in my OWN life while reading about hers. After reading the epilogue, I cried for a good five minutes; heaving heavy sobs; heartbroken sobs. I feel so connected to this woman and what she went through for her children.
I related on two levels: First on the plain old momma level-as a mother I've always wanted what was best for my children; regardless what that meant for me. Vicki was fighting (along with her husband) for what she thought was right; she had opposition at every turn yet still plunged ahead, doing what was best for her family.
The second level, the special needs momma level, was what had me crying. Scratch that, it's what had me sobbing As Vicki talked about the smell of the harsh soap in the NICU and pinning her rings to her chest as she went to the NICU, I could VIVIDLY recall the sixteen days we spent in the NICU. Sometimes when I go somewhere and they have the same soap we used when Gabe was in the hospital, I get nauseous; the memories flood back with something as simple as soap. Ridiculous...yet, that's how it is.
Vicki fights against the multiple disability labels she is sure to get for Evan; she does NOT want the labels, she keeps thinking that Evan "might" beat the odds, that the statistics won't apply to him...and damn did that hit home hard. I remember bargaining and praying and pleading that Gabe wouldn't become a statistic; that his spina bifida would some how be "different" from what the statistics and facts say it would be.
Overall, this was a heart wrenching, sad, reality based book that somehow managed to be positive and uplifting in the end. At the end of the book, I wanted nothing more than to find Vicki and give her a giant hug. I don't know if I'd recommend this book to anyone, to be honest. It was a very hard read, very gut wrenching at times; it raised moral questions that some may not want to deal with. It was tough, but I'm glad I read it; I feel richer for knowing Vicki, Ellie, and Evan's story.
Find it here
Monday, March 29, 2010
Hmm
A while back I was contacted about participating in a study of families with spina bifida; at the time I thought it would be a great idea so I tentatively said that I'd do it. It was a relatively easy test, mostly just paperwork and a dna sample. I could do that, easily, right?
Well...not so much. Why not you might be thinking, it's very easy, you just said it yourself.
Physically this survey/study IS easy, emotionally not so much.
They send you the questionnaire so you can familiarize yourself with it before you speak to the researcher on the phone. It started out innocuously enough. Family history info, pregnancy details, general health of momma etc etc, but then they got to the harder questions. "Did you do x, y, z while pregnant?" "Did anyone in your family go prematurely grey?"(actual question-the answer to that one is yes :/) etc etc and it started to bring back painful memories from over six years ago.
I'd say that 98% of the time, I am completely and utterly at peace with Gabe's disability; I've stopped searching for answers and trying to find someone to blame for it. Long ago, I learned that there is NO sense in trying to find a scapegoat or someone to be angry with over our circumstances. Many nights after finding out Gabe was going to be born early (ON PURPOSE! Yikes) to have his back fixed, I tossed and turned worrying about the what if's and what did I do to cause this type thing. It was awful. It was quite frankly the worst part of my life and still continues to be to this day.
I have blocked out a lot of what happened in those few weeks after the diagnosis and the first few weeks of Gabe's life. I remember bits and pieces here and there, mostly because of what others have told me and from seeing pictures, which is both a blessing and a curse. Most of the memories of that time are NOT positive for me and I'm very glad I don't really remember them, but sometimes I wish I remembered more.
Reading all of these questions brought back the overwhelming grief and depression I felt when I found out about Gabe's diagnosis...and it made me wonder how long I'll be mourning what "could have been"? Like I said, most of the time, I don't even think about it because Gabe is a pretty damn amazing kid, but sometimes, just sometimes it sneaks up on me and I start to wonder just how things COULD have been and what I could have done to prevent all of this (and the answer to that question? Nothing. Absolutely NOTHING. I took folic acid, I was very healthy, I had no fevers while pregnant, neither of us have a family history, I wasn't on any drugs while pregnant or even before conceiving him. Our doctor told us in some cases, spina bifida just happens and Gabe is one of those cases)
Thankfully these moments are few and far in between because I choose to focus on how amazing Gabe is and how he continues to astound all of us including his doctors continually. I focus on the positive and what HE can do, rather than what he cannot do...
Well...not so much. Why not you might be thinking, it's very easy, you just said it yourself.
Physically this survey/study IS easy, emotionally not so much.
They send you the questionnaire so you can familiarize yourself with it before you speak to the researcher on the phone. It started out innocuously enough. Family history info, pregnancy details, general health of momma etc etc, but then they got to the harder questions. "Did you do x, y, z while pregnant?" "Did anyone in your family go prematurely grey?"(actual question-the answer to that one is yes :/) etc etc and it started to bring back painful memories from over six years ago.
I'd say that 98% of the time, I am completely and utterly at peace with Gabe's disability; I've stopped searching for answers and trying to find someone to blame for it. Long ago, I learned that there is NO sense in trying to find a scapegoat or someone to be angry with over our circumstances. Many nights after finding out Gabe was going to be born early (ON PURPOSE! Yikes) to have his back fixed, I tossed and turned worrying about the what if's and what did I do to cause this type thing. It was awful. It was quite frankly the worst part of my life and still continues to be to this day.
I have blocked out a lot of what happened in those few weeks after the diagnosis and the first few weeks of Gabe's life. I remember bits and pieces here and there, mostly because of what others have told me and from seeing pictures, which is both a blessing and a curse. Most of the memories of that time are NOT positive for me and I'm very glad I don't really remember them, but sometimes I wish I remembered more.
Reading all of these questions brought back the overwhelming grief and depression I felt when I found out about Gabe's diagnosis...and it made me wonder how long I'll be mourning what "could have been"? Like I said, most of the time, I don't even think about it because Gabe is a pretty damn amazing kid, but sometimes, just sometimes it sneaks up on me and I start to wonder just how things COULD have been and what I could have done to prevent all of this (and the answer to that question? Nothing. Absolutely NOTHING. I took folic acid, I was very healthy, I had no fevers while pregnant, neither of us have a family history, I wasn't on any drugs while pregnant or even before conceiving him. Our doctor told us in some cases, spina bifida just happens and Gabe is one of those cases)
Thankfully these moments are few and far in between because I choose to focus on how amazing Gabe is and how he continues to astound all of us including his doctors continually. I focus on the positive and what HE can do, rather than what he cannot do...
Saturday, September 19, 2009
*I* am your advocate
Gabriel is five years, seven months, and one day old. Since I was 31 weeks pregnant with him, I've been advocating on his behalf. It started with the doctor who wanted me to abort him and has gone from doctors, therapists, family, friends, and, most recently, school faculty.
For those who are unfamiliar and are hesitant to ask questions, allow me to explain. Gabriel was born with Spina Bifida on the L5-S1 region of his spine (nearly his tailbone) Because of the S.B., he was also born with hydrocephalus and Type II Chiari Malformation of the brain. The three of these combined had the potential to be a serious disability for him, however, by some miracle of God, it hasn't been. He walks, runs, jumps, uses the bathroom, has fine motor skills, is above average in intelligence, and other than wearing an orthodic brace on his weak ankle and seeing four thousand sixty two doctors once a year, he's a pretty typical five and a half year old.
To be honest, the doctors and therapists he sees are flabbergasted. They have NO clue why he can do all of these things and why he does them so well. Gabe's neurosurgeon, whom we refer to as "The NeuroGod" (because he's absolutely amazing) always smiles and says "he's just our little miracle" this man has been working with children who have spina bifida for nearly 30 years and can't explain it. Gabriel's physical therapist, another amazing individual, can't explain why Gabe can walk the way he can, or why he can skip, jump, hop on the trampoline, or play soccer like a pro (no really, the child is a soccer whiz, it's insane). Gabriel's nephrologist (aka the kidney/bladder/bowel guy) does not understand why he has full bowel and bladder control because he shouldn't. The kidney reflux Gabriel was born with and SHOULD have need surgery to fix has gone away...how? why? WHAT?
I have a theory, actually, about why Gabriel can do all of these things and why he will continue to do these things. First off, in this family, we never underestimate the power of God. Never, ever ever. We aren't particularly religious, to be fair, but we are spiritual and we believe that God can and will do things for those who are faithful. Gabriel, for the record, means "Miracle of God" :D
Secondly, we've never told Gabriel that he wasn't *supposed* to do any of these things! We've never told him that he had spina bifida and he shouldn't walk, run, etc. He knows he has spina bifida, yes, because he noticed his scar one day and wanted to know what it was from, but he has no clue what that means. When doctors and therapists told us it couldn't be done, we disagreed with them, sometimes to the point where we LEFT their office to show that WE, as his parents, knew what was best for him and HOW to do it. (yes, we were, and continue to be, that arrogant) When people, both familiar and unfamiliar, criticized us and things we were doing with Gabriel, we proved them wrong; we let Gabriel and his accomplishments do the "talking" so to speak.
We've surrounded ourselves with people who believe in not only us, but more importantly, in Gabriel. We've made a point to cut negativity out of our lives; we don't have the time OR energy for that. People who speak to us rudely and treat us like we've done something wrong don't deserve or receive our time or energy anymore. In the beginning statements like "you did something wrong" "what did you do to screw up your kid?" and "how does it feel to know you did this to your child?" used to hurt and would keep me up crying. Going to appointments where we were told Gabe wouldn't be able to do x, y, or z would worry me for days...and if I'm honest, these things still bother me, but not nearly as much because I know that what George and I do for Gabriel, every single day is the "proof in the pudding" so to speak. We don't justify our actions to anyone. They can question and criticize if they'd like, but I don't respond anymore. I just don't. It's not worth it; focusing my energy on Gabriel (and his little pain in the butt sister ha ha) is what I do now.
Why do I do this? Why do I not respond anymore? Because I am Gabe's voice. I am Gabe's advocate. I am the one who has to speak for Gabriel and I ought to be doing it politely, or I won't teach him anything. I educate people, I respond to people's questions and pity politely. I smile when we're stared at, I pray for those who say nasty things, and I make sure, in no uncertain terms that Gabriel knows that I will always continue to fight for him and for what he needs. Even when Gabe is 58 years old, an old married man with maybe a grandchild or two, I will fight for him. There is no backing down, there is no backing off, Gabriel deserves, and will receive, the most that life has to offer and I will be damned if he isn't going to get that. I've never told him any differently and I'm not about to start to either.
Special needs parents MUST be the advocate for their child. Your child cannot speak for him/herself and needs YOU to do it. It's going to be unpleasant, embarrassing at times, and down right heartbreaking to do it sometimes; it's going to cause rifts in relationships (that probably weren't very strong to begin with) it's going to cost money (oh yes, doctors and therapists are expensive and a lot of times insurance companies do NOT like you switching doctors because you didn't agree with the doc/therapist) and, quite frankly, it's going to be exhausting and very lonely sometimes...but we do it for the good of our children. We do it so their voices are heard. We do it, not for ourselves, but for THEM...because at the very least, they deserve it.
*As a heads up, as it gets closer to October (Spina Bifida Awareness Month) I'll be doing more posts like these; Special needs parenting is a huge part of the Witkowski Clan's life and I'll be expressing that more and more in the coming weeks.
For those who are unfamiliar and are hesitant to ask questions, allow me to explain. Gabriel was born with Spina Bifida on the L5-S1 region of his spine (nearly his tailbone) Because of the S.B., he was also born with hydrocephalus and Type II Chiari Malformation of the brain. The three of these combined had the potential to be a serious disability for him, however, by some miracle of God, it hasn't been. He walks, runs, jumps, uses the bathroom, has fine motor skills, is above average in intelligence, and other than wearing an orthodic brace on his weak ankle and seeing four thousand sixty two doctors once a year, he's a pretty typical five and a half year old.
To be honest, the doctors and therapists he sees are flabbergasted. They have NO clue why he can do all of these things and why he does them so well. Gabe's neurosurgeon, whom we refer to as "The NeuroGod" (because he's absolutely amazing) always smiles and says "he's just our little miracle" this man has been working with children who have spina bifida for nearly 30 years and can't explain it. Gabriel's physical therapist, another amazing individual, can't explain why Gabe can walk the way he can, or why he can skip, jump, hop on the trampoline, or play soccer like a pro (no really, the child is a soccer whiz, it's insane). Gabriel's nephrologist (aka the kidney/bladder/bowel guy) does not understand why he has full bowel and bladder control because he shouldn't. The kidney reflux Gabriel was born with and SHOULD have need surgery to fix has gone away...how? why? WHAT?
I have a theory, actually, about why Gabriel can do all of these things and why he will continue to do these things. First off, in this family, we never underestimate the power of God. Never, ever ever. We aren't particularly religious, to be fair, but we are spiritual and we believe that God can and will do things for those who are faithful. Gabriel, for the record, means "Miracle of God" :D
Secondly, we've never told Gabriel that he wasn't *supposed* to do any of these things! We've never told him that he had spina bifida and he shouldn't walk, run, etc. He knows he has spina bifida, yes, because he noticed his scar one day and wanted to know what it was from, but he has no clue what that means. When doctors and therapists told us it couldn't be done, we disagreed with them, sometimes to the point where we LEFT their office to show that WE, as his parents, knew what was best for him and HOW to do it. (yes, we were, and continue to be, that arrogant) When people, both familiar and unfamiliar, criticized us and things we were doing with Gabriel, we proved them wrong; we let Gabriel and his accomplishments do the "talking" so to speak.
We've surrounded ourselves with people who believe in not only us, but more importantly, in Gabriel. We've made a point to cut negativity out of our lives; we don't have the time OR energy for that. People who speak to us rudely and treat us like we've done something wrong don't deserve or receive our time or energy anymore. In the beginning statements like "you did something wrong" "what did you do to screw up your kid?" and "how does it feel to know you did this to your child?" used to hurt and would keep me up crying. Going to appointments where we were told Gabe wouldn't be able to do x, y, or z would worry me for days...and if I'm honest, these things still bother me, but not nearly as much because I know that what George and I do for Gabriel, every single day is the "proof in the pudding" so to speak. We don't justify our actions to anyone. They can question and criticize if they'd like, but I don't respond anymore. I just don't. It's not worth it; focusing my energy on Gabriel (and his little pain in the butt sister ha ha) is what I do now.
Why do I do this? Why do I not respond anymore? Because I am Gabe's voice. I am Gabe's advocate. I am the one who has to speak for Gabriel and I ought to be doing it politely, or I won't teach him anything. I educate people, I respond to people's questions and pity politely. I smile when we're stared at, I pray for those who say nasty things, and I make sure, in no uncertain terms that Gabriel knows that I will always continue to fight for him and for what he needs. Even when Gabe is 58 years old, an old married man with maybe a grandchild or two, I will fight for him. There is no backing down, there is no backing off, Gabriel deserves, and will receive, the most that life has to offer and I will be damned if he isn't going to get that. I've never told him any differently and I'm not about to start to either.
Special needs parents MUST be the advocate for their child. Your child cannot speak for him/herself and needs YOU to do it. It's going to be unpleasant, embarrassing at times, and down right heartbreaking to do it sometimes; it's going to cause rifts in relationships (that probably weren't very strong to begin with) it's going to cost money (oh yes, doctors and therapists are expensive and a lot of times insurance companies do NOT like you switching doctors because you didn't agree with the doc/therapist) and, quite frankly, it's going to be exhausting and very lonely sometimes...but we do it for the good of our children. We do it so their voices are heard. We do it, not for ourselves, but for THEM...because at the very least, they deserve it.
*As a heads up, as it gets closer to October (Spina Bifida Awareness Month) I'll be doing more posts like these; Special needs parenting is a huge part of the Witkowski Clan's life and I'll be expressing that more and more in the coming weeks.
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