When my eldest two children where young, I had a spray bottle of water. I put in a couple drops of food coloring and told the kids it was "magic monster spray". I would get rid of the monsters under the bed, in then closet or just the ones they heard.
It always worked.
Except with Keargan. He insisted the magic didn't work. That he could still hear the voices, and see here monsters. Most of his nights were spent in my room.
Apparently Magic Monster Spray doesn't help with the voices that rage inside his head due to his schizophrenia.
A blog following Keargan, aka "Pookie", as navigates a world with early onset pediatric schizophrenia.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Monday, September 23, 2019
Sunday, January 4, 2015
Dear Suicidal Teens (And How Dear You Are, Indeed)
Dear Suicidal Aspie Teen (Or Autistic Teen, Or Teen With PDD-NOS, Or ADHD Teen, Or OCD Teen, Or Bipolar Teen, or Depressed Teen, or Gay Teen, or Trans Teen, or Bullied Teen, or Abused Teen, or Whoever You May Be):
I can’t promise that you’ll wake up one morning and your world will be filled with endless sunshine (or moonlight, if that’s more your style) and happiness and prosperity and that you’ll never have another self-loathing or suicidal thought ever again. I can’t promise that you’ll ever be the most well-liked person in your school or workplace or that you’ll never be bullied or loathed or put-down ever again. I can’t promise that your world will be any less overwhelming, any less dizzying, or any less difficult to live in than it is now. I can’t promise that you’ll become the next Nobel Prize winner, the next Pulitzer-winning author, the next Grammy-winning musical artist, the next Oscar-winning actor or actress, the next gold-medal Olympian, or what-have-you. I wish all of these things for you, of course, but I’m no psychic; I haven’t a clue what your future holds.
But having dealt with suicidal urges since the age of twelve, I do know this: staying alive is worth it.
Now, some of you may be thinking, “Yeah, well, staying alive may be worth it for you, but you don’t know me, and you don’t know the hell I live in.” And, indeed, I do not. I don’t know if you having a loving family or supportive friends; I don’t know if you have family or friends at all. I don’t know what it’s like to have your exact sensory issues, your exact deficits, your exact anxieties and fears, your exact tics and stims, your exact pain, your exact loneliness, or your exact regrets. I don’t know if you’ll ever graduate high school or college, and I don’t know if you’ll ever get a job (fun fact: I turn 20 years old in a month, I’m a straight-A student who supposedly has “decent social skills,” and I have never been employed a day in my life. It’s not just you, I promise). I know what it’s like to have my PDD-NOS, to have my weakness and inadequacies and painful memories and regrets, but I don’t know what it’s like to have yourstruggles, and I’m not going to pretend that I do.
But I know what you do have: you have yourself, and that “you” deserves a chance—a chance to try, a chance to experience, and a chance to find beauty in this world. See, there’ll be moments that you’ll be glad that you stuck around to experience. I can’t promise that the moments will be particularly abundant, but I can promise you that they’re there. There’ll be a song that you never heard before that sends chills from the tip of your head to the core of your being. There’ll be a time when you help a stranger, perhaps even an act so small, so inconsequential to you that you have no idea it was an act of kindness at all, and that stranger will tell you that you made their day, and your heart will beat a little lighter for a little while. There’ll be that hobby that you get into, a hobby that you may or may not ever be “good” at, that will fill you with awe and, well, fun! There’ll be a way that the sunset scatters across the clouds, a way that the leaves tumble from the trees or that the wind sweeps across a field of tall grass, a way that the rain will dance along the rooftops, that will take your breath away, even if for only a second. There’ll be a contest that you enter that you swear that there’s no way you will win or place in…but you do, because you’re more incredible than the self-loathing thoughts in your head will ever let you believe. There’ll be battles that you win, discoveries that you make, and joys that you have that bring you happiness just when you thought that happiness could no longer exist.
And maybe it’s presumptuous of me to assume that the little moments of happiness are worth dealing with whatever pain you are dealing with. But consider this: maybe you’re somebody else’s small miracle, somebody else’s stranger, smile, random occurrence that makes their day or even their life, and maybe your dark thoughts are being conniving little jerks that aren’t letting you see this.
Sometimes, you mean a lot more to a person than you’ll ever be able to believe.
Throughout most of my adolescence, I swore that my father merely tolerated me because he had to and that his life would be indefinitely better without me in it. It wasn’t his choice for his wife to give birth to his child when he was 48 years old, when his other children were already grown up and getting on with their own lives and when retirement was just over the horizon. It wasn’t his choice for that child to be “developmentally delayed” and for that child to need speech therapy and special education. It wasn’t his choice for my mother, through no fault of her own, to be forcefully removed from our family picture when I was six. It wasn’t his choice to have a daughter who threw deafening tantrums in the middle of crowded supermarkets and for strangers to judge his parenting skills. It wasn’t his choice to have a teenager that bit and scratched herself, that would almost get them both killed with her inability to distinguish “No!” from “Go!” from the driver’s seat of her small car, that made him stay up late at night sobbing with worry. It wasn’t his choice to have a kid like me. I thought that there was no possible way that he could have trulyloved me—all I ever seemed to do was drain and irritate him, and he didn’t deserve the trouble I put him through.
And I told him this in a therapy session one day; I told him how sorry I was for ruining his life and how I wish that I could be a better daughter, one that didn’t make things so worrysome for him. He was absolutely flabbergasted; he swore that I was the best thing that ever happened to him. Many days, I highly doubt that this is at all true, but the way his eyes almost glistened with tears (note: this is a man who passes large kidney stones and attends family members’ funerals without even hinting at a tear) that day tells me that I must mean something to the guy. He said that I keep him young, that his later years would have been so much less colorful without me in it. Now, I’m sure that I age him much more than I refresh him, but maybe the goofy poetry that I write inside of hand-made cards serves as a Fountain of Youth running behind those wrinkled eyes. Also, I’m his personal tech support; I’m the one that taught him how to use an iPhone and how to set up a Facebook account. That has to count for something, right?
See, we humans aren’t too good at telling our fellow humans how much they mean to us. It may well be that where you look in the mirror and see a burden, an aggravation, a chronic screw-up, others see a joy, a blessing, a person worth having around and a person that makes their lives better simply by you being in it. When you see yourself as unlikable, you may wonder how anyone else could possibly like you, either—I, personally, tend to expect that everyone sees me as bothersome or annoying and am often very taken aback when someone admits any sort of fondness towards me. But you are likeable, and chances are that there’s at least somebody out there who has a fondness towards you and who would be sad if they could no longer experience your presence.
And I know that you can know and believe all of this and that it still won’t take the thoughts and feelings away. I still feel absolutely worthless and useless many days, and I still don’t particularly like myself as a person sometimes. Knowing all of this about the beauty of living and about how loved I really am doesn’t do much to keep the images of a knife cutting through my throat or my body dangling from a tree by a rope from popping up from time to time. It’s an on-going battle, one that you may have to fight every single day or even every single hours. It’s not at all a fair battle, it’s not at all an easy battle, and it surely isn’t a fun battle, but it’s a battle worth fighting, and it’s a battle that you’re more equipped to fight that you may ever feel that you are. And the good news is that there are so many people fighting this battle alongside you and that would be more than happy to help you recharge your ammo. There’s the National and Regional suicidal hotlines for your area (United States: 1-800-784-2433 ; U.K: 08457 90 90 90 ; here’s a pretty comprehensive list: http://www.reddit.com/r/SuicideWatch/wiki/hotlines), as well as several online chatrooms, such as https://www.imalive.org/. There’s the members of this Aspie Life group. There’s me, if that’s anything. There are so many people who want you to win this battle, who want you to live, who want you to experience happiness and success and all that life has to offer. There are reasons to keep fighting. I promise.
I can’t promise that you’ll wake up one morning and your world will be filled with endless sunshine (or moonlight, if that’s more your style) and happiness and prosperity and that you’ll never have another self-loathing or suicidal thought ever again. I can’t promise that you’ll ever be the most well-liked person in your school or workplace or that you’ll never be bullied or loathed or put-down ever again. I can’t promise that your world will be any less overwhelming, any less dizzying, or any less difficult to live in than it is now. I can’t promise that you’ll become the next Nobel Prize winner, the next Pulitzer-winning author, the next Grammy-winning musical artist, the next Oscar-winning actor or actress, the next gold-medal Olympian, or what-have-you. I wish all of these things for you, of course, but I’m no psychic; I haven’t a clue what your future holds.
But having dealt with suicidal urges since the age of twelve, I do know this: staying alive is worth it.
Now, some of you may be thinking, “Yeah, well, staying alive may be worth it for you, but you don’t know me, and you don’t know the hell I live in.” And, indeed, I do not. I don’t know if you having a loving family or supportive friends; I don’t know if you have family or friends at all. I don’t know what it’s like to have your exact sensory issues, your exact deficits, your exact anxieties and fears, your exact tics and stims, your exact pain, your exact loneliness, or your exact regrets. I don’t know if you’ll ever graduate high school or college, and I don’t know if you’ll ever get a job (fun fact: I turn 20 years old in a month, I’m a straight-A student who supposedly has “decent social skills,” and I have never been employed a day in my life. It’s not just you, I promise). I know what it’s like to have my PDD-NOS, to have my weakness and inadequacies and painful memories and regrets, but I don’t know what it’s like to have yourstruggles, and I’m not going to pretend that I do.
But I know what you do have: you have yourself, and that “you” deserves a chance—a chance to try, a chance to experience, and a chance to find beauty in this world. See, there’ll be moments that you’ll be glad that you stuck around to experience. I can’t promise that the moments will be particularly abundant, but I can promise you that they’re there. There’ll be a song that you never heard before that sends chills from the tip of your head to the core of your being. There’ll be a time when you help a stranger, perhaps even an act so small, so inconsequential to you that you have no idea it was an act of kindness at all, and that stranger will tell you that you made their day, and your heart will beat a little lighter for a little while. There’ll be that hobby that you get into, a hobby that you may or may not ever be “good” at, that will fill you with awe and, well, fun! There’ll be a way that the sunset scatters across the clouds, a way that the leaves tumble from the trees or that the wind sweeps across a field of tall grass, a way that the rain will dance along the rooftops, that will take your breath away, even if for only a second. There’ll be a contest that you enter that you swear that there’s no way you will win or place in…but you do, because you’re more incredible than the self-loathing thoughts in your head will ever let you believe. There’ll be battles that you win, discoveries that you make, and joys that you have that bring you happiness just when you thought that happiness could no longer exist.
And maybe it’s presumptuous of me to assume that the little moments of happiness are worth dealing with whatever pain you are dealing with. But consider this: maybe you’re somebody else’s small miracle, somebody else’s stranger, smile, random occurrence that makes their day or even their life, and maybe your dark thoughts are being conniving little jerks that aren’t letting you see this.
Sometimes, you mean a lot more to a person than you’ll ever be able to believe.
Throughout most of my adolescence, I swore that my father merely tolerated me because he had to and that his life would be indefinitely better without me in it. It wasn’t his choice for his wife to give birth to his child when he was 48 years old, when his other children were already grown up and getting on with their own lives and when retirement was just over the horizon. It wasn’t his choice for that child to be “developmentally delayed” and for that child to need speech therapy and special education. It wasn’t his choice for my mother, through no fault of her own, to be forcefully removed from our family picture when I was six. It wasn’t his choice to have a daughter who threw deafening tantrums in the middle of crowded supermarkets and for strangers to judge his parenting skills. It wasn’t his choice to have a teenager that bit and scratched herself, that would almost get them both killed with her inability to distinguish “No!” from “Go!” from the driver’s seat of her small car, that made him stay up late at night sobbing with worry. It wasn’t his choice to have a kid like me. I thought that there was no possible way that he could have trulyloved me—all I ever seemed to do was drain and irritate him, and he didn’t deserve the trouble I put him through.
And I told him this in a therapy session one day; I told him how sorry I was for ruining his life and how I wish that I could be a better daughter, one that didn’t make things so worrysome for him. He was absolutely flabbergasted; he swore that I was the best thing that ever happened to him. Many days, I highly doubt that this is at all true, but the way his eyes almost glistened with tears (note: this is a man who passes large kidney stones and attends family members’ funerals without even hinting at a tear) that day tells me that I must mean something to the guy. He said that I keep him young, that his later years would have been so much less colorful without me in it. Now, I’m sure that I age him much more than I refresh him, but maybe the goofy poetry that I write inside of hand-made cards serves as a Fountain of Youth running behind those wrinkled eyes. Also, I’m his personal tech support; I’m the one that taught him how to use an iPhone and how to set up a Facebook account. That has to count for something, right?
See, we humans aren’t too good at telling our fellow humans how much they mean to us. It may well be that where you look in the mirror and see a burden, an aggravation, a chronic screw-up, others see a joy, a blessing, a person worth having around and a person that makes their lives better simply by you being in it. When you see yourself as unlikable, you may wonder how anyone else could possibly like you, either—I, personally, tend to expect that everyone sees me as bothersome or annoying and am often very taken aback when someone admits any sort of fondness towards me. But you are likeable, and chances are that there’s at least somebody out there who has a fondness towards you and who would be sad if they could no longer experience your presence.
And I know that you can know and believe all of this and that it still won’t take the thoughts and feelings away. I still feel absolutely worthless and useless many days, and I still don’t particularly like myself as a person sometimes. Knowing all of this about the beauty of living and about how loved I really am doesn’t do much to keep the images of a knife cutting through my throat or my body dangling from a tree by a rope from popping up from time to time. It’s an on-going battle, one that you may have to fight every single day or even every single hours. It’s not at all a fair battle, it’s not at all an easy battle, and it surely isn’t a fun battle, but it’s a battle worth fighting, and it’s a battle that you’re more equipped to fight that you may ever feel that you are. And the good news is that there are so many people fighting this battle alongside you and that would be more than happy to help you recharge your ammo. There’s the National and Regional suicidal hotlines for your area (United States: 1-800-784-2433 ; U.K: 08457 90 90 90 ; here’s a pretty comprehensive list: http://www.reddit.com/r/SuicideWatch/wiki/hotlines), as well as several online chatrooms, such as https://www.imalive.org/. There’s the members of this Aspie Life group. There’s me, if that’s anything. There are so many people who want you to win this battle, who want you to live, who want you to experience happiness and success and all that life has to offer. There are reasons to keep fighting. I promise.
Because I know that I can’t promise that you’ll ever win a Nobel, a Pulitzer, a Grammy, an Oscar, or an Olympic gold medal, that you’ll ever have an abundance of friends or your dream career or a lover or even a degree, but, you know, you just might, and the only way to find out is to stick around and see.
Submitted January 4th, 2015
Author: Paula Gomez
Click blue link for: Email Contact
Tags
abused,
adhd,
asperger suicide,
asperger syndrome,
aspergers,
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autism,
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gay,
ocd,
pdd-nos,
suicide,
teen suicide,
trans
Tuesday, February 26, 2013
Asperger Syndrome Suicide
You wake on a typical weekend morning.
Your children are sleeping as you prepare breakfast. At 8:30am you
head upstairs to check in on your 14 year old son. A child with a
huge heart and beautiful smile, your heart breaks for him often. He
has Asperger Syndrome and struggles with the feelings that come from
not being accepted by your peers. He is very intelligent, which only
seems to fuel the problem. Even adults look at him, and due to his
intelligence, expect more from him then he is capable of. How do you
explain to a child that only things logically, that the reason people
shun him, or get frustrated with him, is simply because he is
different? There is no logic in that, yet it is the simple truth,
unfair that it may be.
These thoughts bombard you as you
slowly walk up the stairs, wondering what today might be and how you
will be able to help your son. You open the door as you call softly
to him to wake up. With a start you realize that he isn't in bed. You
step back into the hallway, figuring he was in the bathroom, or maybe
downstairs somewhere. You call for him several times, with no answer.
You aren't really worried. It's not
uncommon for your son to get up and go walking. It helps to soothe
him, comfort him. You hope he grabbed something for breakfast before
he left. He's struggled so much lately, he doesn't understand why
people treat him the way they do. He doesn't understand why the world
is so different then what he can understand or relate to. As you head
back into the kitchen, you pray again the prayer you've said so many
times, “Please God, help me find a way to help my son”.
Your laptop is sitting on the table.
You slide it over to you and post a quick comment on Facebook, asking
anyone that may know where your son is to get in touch with you as
soon as possible.
The hours tick away and you still
haven't heard anything. Your son doesn't typically stay gone for this
long, and you are starting to worry. You've had this nagging feeling
that something isn't quite right ever since you discovered that he
wasn't in bed this morning. You've been shoving it aside, but now
your starting to wonder if you should pay more attention to it.
An associate from work calls you. It's
doubtful she's heard that you posted on Facebook asking for info on
your son's whereabouts, and you don't really want to get into it on
the phone with her. You answer the phone, and in a style true to her,
she starts babbling about traffic being backed up on the interstate.
She is talking over excitedly and very fast. To fast for your ever
growing stressed emotions to keep up with. You vaguely hear her tell
you how traffic was stopped because of a body found on the side of
the road, and how it'd been there for hours before anyone bothered to
call 911. You finally tell her that it's been a very bad morning for
you, and that you have to get off the phone.
No sooner have you hung up your phone
then panic seizes you. Didn't your friend from work just say that the
body found had red hair? Surely she'd have said it was a teenager or
a child if it was your son. But, she said it had been there for
hours....hours! Oh no, she also said it was near where you live! That
can't be your son. Oh please Dear God, don't let that be your son.
You quickly snatch the phone back up
and call the local police department. You explain that your son, your
son that has red hair, is missing. Your transferred to an officer,
who asks you a ton of questions and then quietly tells you that two
officers are already in route to your home to get a statement.
There is a knock at the door. You
didn't hear the car pull up over the phone conversation. You quickly
run to the door and yank it open. As your mind registers that it is
two police officers, you stand on your tip toes to look over their
shoulder, praying that your son is standing behind them.
The tallest of the two officers look at
you with pity and an emotion that can only be sadness as he asks you
to step inside and find a seat. This can't be happening! Something is
wrong! Where is your son? That body on the side of the interstate can
not be your son!
You listen to the officers' words, as
if you are detached and standing a few feet away from yourself. It
seems that your son is the “body” that your friend told you
about. The police haven't pieced it all together yet, but it appears
that your son jumped from the bridge that goes across the interstate
at around 3:30am. He was hit by a tractor trailer. Through the next
several hours, until sometime in the afternoon, traffic went on as
usual. People noticed what appeared to be a “large animal in a pile
of clothes” but didn't have time to report it. Others thought it
was a body, but again were to busy to pick up their cell phones and
call 911, much less turn around to check. It wasn't until afternoon
that someone stopped and called 911 to let them know that a body was
on the side of the interstate, where it had lain since
3:30am.....alone and hit by several vehicles. The clothing matches up
to your son's clothing. There isn't any reason to do an
identification, the police will use medical means to finalize that it
really is your son. The police are certain it is suicide.
The next day, our best friend stops by
to let you know that the story was in the newspaper again. This time
the article states that the body that held up traffic for hours was a
14 year old that committed suicide. At the very bottom of the
article, almost as an afterthought, it reads, “the teen was taking
regular medication for Asperger's Syndrome and autism”. You look at
her incredulously. Your son committed suicide due to the challenges,
and lack of treatment, he faced having Asperger Syndrome, and it was
only mentioned at the very bottom of the article as an afterthought?
A Sargent said that your son was taking medication for Asperger
Syndrome when there are no medications available to treat it, as if
it's something that requires a magic cure? Why wasn't it mentioned
that your son being treated like an outcast and different, not just
from his peers but from adults, impacted him daily? Why didn't the
article talk about how tons of parents around the country are finding
themselves without the resources or tools necessary to help their
children? Why didn't the article list the few available resources for
this area? Why didn't it reach out to other families going through
something similar, other families that every day fear their teen with
Asperger Syndrome might also commit suicide?
* * * * * * * * * * * * * * * * * * * *
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
I wish I could say that I just made up
this story. However, I am saddened beyond words to say that I didn't.
This happened here over the last few days. As a mother frantically
searched for her beloved 14 year old son, motorist to busy to call
911 were driving by his battered and tattered body.
A newspaper quoted Sgt. G.A. Barger of
the North Carolina State Patrol as stating that the child was taking
medication for his “Asperger Syndrome and Autism”. To date, there
are no medications available to treat Asperger Syndrome. There is no
cure for Autism, and many parents advocate that a cure isn't needed,
merely the perception of “typical” people to change.
People have already started to judge. A
mother states that she has a child with Asperger's and she doesn't
understand why the article mentions it at all as her son is “bright
and a joy to be around”. She wonders what Asperger Syndrome has to
do with his suicide, or any other news article that has mentioned it
recently. Another mentions medications and how they only “make
things worse”. Another poster states that anyone with Asperger
Syndrome wouldn't want that for the rest of their lives. Yet another
newspaper article states that the child “suffered with
Asperger Syndrome”.
There are so many things I want to say.
I want to scream that children with Asperger Syndrome wouldn't suffer
if it weren't for the judgements, criticizing, and mistreatment from
“typical” people. I want to scream that there is not a medication
for Asperger Syndrome. I want to scream that Dan Akroyd, Bill Gates,
Daryl Hannah, Satoshi Tajiri, James Durbin, Paula Hamilton, Peter
Howson, Clay Marzo, Les Murray and others all have Asperger Syndrome.
There are so many more, Al Gore, James Taylor, Bob Dylan, Robin
Williams, Andy Kaufman, Hans Asperger, isaac Asimove and more. Do
they seem to “suffer”, need “medication”, or need a cure? I
want to scream that popular belief feel that Abraham Lincoln, Bobby
Fischer, Benjamin Franklin, Marilyn Monroe, Henry Ford, Isaac Newton,
Jane Austen, Vincent Van Gogh, and Virginia Woolf all had Asperger
Syndrome. How can all these people be broken and need a “cure”?
How can all these people not want to live simply because of their
diagnosis?
I want to scream at the world that I am
the mother of the sweetest, kindest, most caring teenage son. I want
to scream how his intelligence level is through the roof, but how he
lacks an understanding of social concepts. I want to scream out how
he tries to engage his peers in conversation, but the “typical”
teens shun him simply because he is different and different isn't
“cool”. I want to scream at the world that different is not bad
or wrong.
Yet, instead I will stand here and
speak for the family that is to grief stricken to speak for
themselves. I will stand and say that my son has Asperger Syndrome
and that his life has been difficult. I will stand and speak out and
let others know that my son's life, and the life of other teens with
Asperger Syndrome, is difficult because others refuse to accept
different as being acceptable. I will stand and tell others that you
can not say you are scared of someone with Asperger Syndrome because
of what one child with Asperger Syndrome did months ago, but instead
you should stand up and help find a way for these children to have
available the resources they need to help them succeed.
I am the mother of a child with
Asperger Syndrome.
I am proud to be the mother of a child
with Asperger Syndrome.
I support ALL parents of children with
special needs.
I won't ever quit speaking up for my
children's needs.
Always remember, if you've met one
child with Autism, then you've met ONE child with Autism. No two
children on the Autistic spectrum are alike, no two children with
Asperger Syndrome are alike. One thing they all share though,
resources are not available to help them reach their full potential.
Nor do they experience the acceptance in society that they should.
Please, don't be one of the passive
people that sit by and judge and criticize. Stand up today and speak
out.
For resources regarding Autism Spectrum
Disorder, you can follow the links below:
Autism Speaks Social Network for on-line chats with other parents in similar situations. Some use it to pose a specific question and get feedback, while others utilize it as a support group.
Autism Speaks Tool Kits http://www.autismspeaks.org/family-services/tool-kits
Autism Speaks Family Services web link - http://www.autismspeaks.org/family-services
Other Resources:
http://www.yourlittleprofessor.com/friendship.html
http://www.yourlittleprofessor.com/teen.html
http://teenautism.com/category/puberty/
http://www.aspires-relationships.com/. It seems to have a wide variety of resources that may be helpful.
There is an excellent online support group called GRASP – The Global & Regional Asperger’s Syndrome Partnership. http://grasp.org/page/grasp-support-groups.
You can contact me at any time for questions, support, or information at pathsfrommysoul@gmail.com
Monday, March 5, 2012
Light it up Blue for Autism
"In celebration of World Autism Awareness Day on April 2, Autism Speaks will again seek to turn the world blue. Our third annual Light It Up Blue initiative is fully underway with over 350 buildings already committed to turning blue.
Among the landmarks that will be turning blue on April 2, 2012 are Rockefeller Center, Top of the Rock Observation Deck and Madison Square Garden in New York City, Hôtel de Ville in Paris, France, the famous Tokyo Tower in Japan and Canada’s CN Tower, the Sydney Opera House in Australia and Michigan’s Mackinac Bridge.
Visit our website to learn how to participate and check back in early March to LightItUpBlue.org to register your events and see a full list of participating buildings.
Last year we had over 2000 buildings and landmarks turn blue. With your help, in 2012 we will more than double that number!!" (taken from http://blog.autismspeaks.org/2012/02/22/liub-2012-kickoff/)
Lowes has blue bulbs available. Please stop by to get your blue bulbs and light up your own home to raise awareness for Autism. Thank you. 
Tags
april 2,
april 2nd,
aspergers,
autism,
autism spectrum,
blue,
light it up blue
Wednesday, January 25, 2012
Update
I apologize for being so slack and not keeping this blog updated more. We went through a spell where Keeg, Pook's older brother was battling his health condition again that kept me busy. Then we had a family crisis and after that, I ended up in the hospital for a week and am only just getting back to my self!
We've had quite a few things happen in the last several months. First, I'll start with the chiropractor visit. We discovered that the top vertebrea in Pook's neck is slanted at a sharp degree upwards. This could, in fact, be blocking signals from flowing from his brain to the rest of his body like they should! This is big news for us.
You see, Pook's head has always been super super sensitive to touch/pain. However, from the neck down, he feels no pain at all. He's cracked his elbow when ice skating, and never once said it hurt! He sliced through the tendon in his pinkie finger, and never complained of pain! His neurologist has long said that he felt there was something blocking the signals that are supposed to flow freely between his body and brain.
So, can chiropractic help? We're hopeful that it can. So far, we have noticed changes in Pook, but have no way of knowing what is due to chiropractic and what isn't!
Now, let's talk about phonics. Pook still doesn't comprehend that each letter makes a distinct sound, or that putting those sounds together forms words. However, he is recognizing sight words on his own. He knows and can spell many words now, some of which are off, on, out, and exit. He picks the words on his own and once he says he knows it, he's retaining the information!! As you may recall, Pook typically gains new information but then looses it. Hopefully that's not going to happen anymore!
Also, Pook's memory has always been above and beyond, but now he can articulate the things he remembers even better. He has told us about events that happened when he was as young as 6 months old! He remembers details so vividly that there is no mistake that these are his memories and not something he just overheard. It's pretty spectacular (isn't God amazing!).
Pook also is starting to understand different emotions and the part they play in his actions. This is a huge leap for him and it's making things so much easier! He's started to express guilt when he does something wrong, and genuinely feels remorse for his actions that hurt others. There is still a significant delay in the amount of time between the actual action and his emotions catching up to it, but we're getting there and that is a start.
At this moment, it really seems that his Auditory Processing Delay is causing most of his frustrations. He acts on impulse, and then will cry for long periods of time upset about his action. He tells me, "I not want to do that, my body made me" or say that his "brain made me". My heart breaks for him when this happens. He's starting to realize that his actions have a bearing on others, and to feel that he can't control these actions is very upsetting to him.
He's only just now started addressing the issues he has resulting from the recent division in our family. He doesn't speak about his emotions, except to say that he misses Daddy. The rest of the emotions he discusses he puts on the other person. For example, if he was mad at me, he'd say "Mommy has a mad face". It can get confusing at times, but we're figuring it out!
Overall, Pook is making progress each and every day and I am thrilled! He's come a long way. One of his medial specialist told me recently that he'd have never come this far if I hadn't started his therapies so young. I encourage each parent to challenge any specialist or insurance company that wants you to wait until your child is older for therapy. Early intervention makes such a big difference. Fight for your child, cause at the end of the day, you're the only one that will.
We've had quite a few things happen in the last several months. First, I'll start with the chiropractor visit. We discovered that the top vertebrea in Pook's neck is slanted at a sharp degree upwards. This could, in fact, be blocking signals from flowing from his brain to the rest of his body like they should! This is big news for us.
You see, Pook's head has always been super super sensitive to touch/pain. However, from the neck down, he feels no pain at all. He's cracked his elbow when ice skating, and never once said it hurt! He sliced through the tendon in his pinkie finger, and never complained of pain! His neurologist has long said that he felt there was something blocking the signals that are supposed to flow freely between his body and brain.
So, can chiropractic help? We're hopeful that it can. So far, we have noticed changes in Pook, but have no way of knowing what is due to chiropractic and what isn't!
Now, let's talk about phonics. Pook still doesn't comprehend that each letter makes a distinct sound, or that putting those sounds together forms words. However, he is recognizing sight words on his own. He knows and can spell many words now, some of which are off, on, out, and exit. He picks the words on his own and once he says he knows it, he's retaining the information!! As you may recall, Pook typically gains new information but then looses it. Hopefully that's not going to happen anymore!
Also, Pook's memory has always been above and beyond, but now he can articulate the things he remembers even better. He has told us about events that happened when he was as young as 6 months old! He remembers details so vividly that there is no mistake that these are his memories and not something he just overheard. It's pretty spectacular (isn't God amazing!).
Pook also is starting to understand different emotions and the part they play in his actions. This is a huge leap for him and it's making things so much easier! He's started to express guilt when he does something wrong, and genuinely feels remorse for his actions that hurt others. There is still a significant delay in the amount of time between the actual action and his emotions catching up to it, but we're getting there and that is a start.
At this moment, it really seems that his Auditory Processing Delay is causing most of his frustrations. He acts on impulse, and then will cry for long periods of time upset about his action. He tells me, "I not want to do that, my body made me" or say that his "brain made me". My heart breaks for him when this happens. He's starting to realize that his actions have a bearing on others, and to feel that he can't control these actions is very upsetting to him.
He's only just now started addressing the issues he has resulting from the recent division in our family. He doesn't speak about his emotions, except to say that he misses Daddy. The rest of the emotions he discusses he puts on the other person. For example, if he was mad at me, he'd say "Mommy has a mad face". It can get confusing at times, but we're figuring it out!
Overall, Pook is making progress each and every day and I am thrilled! He's come a long way. One of his medial specialist told me recently that he'd have never come this far if I hadn't started his therapies so young. I encourage each parent to challenge any specialist or insurance company that wants you to wait until your child is older for therapy. Early intervention makes such a big difference. Fight for your child, cause at the end of the day, you're the only one that will.
Friday, November 11, 2011
RIP Dixie
RIP Dixie
I don't know where to start. I guess
first I need to tell you how we met Dixie.
Our family purchased a home in a very
rural area in March of this year. It's perfect....the location is all
we've ever dreamed of. We live in the midst of a forest, with a lake
nearby. Neighbors are practically non-existent and we never hear
sounds of traffic. Our lullabies are crickets, frogs and wonderful,
peaceful, calming sounds of night.
About a week after we started moving
in, my friend James and I were traveling with my three children to go
pack up some more belongings at our former home. As we came near a
stop sign, we saw something run across the road. We weren't quite
sure what it was, but thought it might be a dog. Living in a rural
area means that it's not uncommon to see animals get dumped. We
stopped at the stop sign, opened the driver's door, and whistled. Up
came running Dixie. She was wagging her tail so much the whole back
half of her was swinging from side to side. Without hesitation she
climbed into the drivers door, under his legs, across the center
console and stretched herself across my 3 children's laps.
I'd always told my daughter, Keara,
that when we bought a home, we'd get a dog. She'd waited 11 years.
When we bought our home, she told Pookie (our 5 year old son with
Autism) about our deal. He had prayed each night for a week for God
to give us a dog. When Dixie stretched out across his and his
siblings laps, he smiled as big as he could and with wide eyed wonder
told me, “Mommy! God gave me a dog!” Whose to argue with a
child's faith?
A few weeks after Dixie came into our
lives, it was warm enough for the children to go swimming. You know
the time of year....when the air outside is warm, the sun is bringing
a warmth to your skin that you longed for all winter, and though no
adult would ever get into the still chilled water, the kids all think
it feels great! As us adults sat on the shore with Dixie, our
children frolicked and played in the lake. Our 11 year old daughter,
got caught in a current. Though she could paddle and keep herself in
the same spot, she couldn't get up to shore. As I was getting ready
to get in to bring her to shore, Dixie jumped in the water. To our
shock and surprise, Dixie swam out to Keara, placed her collar under
Keara's hand, and pulled her to shore. Everyone was shocked and
thrilled.
Dixie seemed to also have been trained
as a therapy dog. Though we have no knowledge of her background, she
always stayed beside Pookie when he was out of doors. She would run
beside him on his bike, and even get in front of him if she felt he
went to far. He would lie down, resting his head on her and she was
content. When he would start to have a meltdown, she would come and
push against him.....calming him tremendously. She was in tune with
him on a level I'd never seen between child and pet.
As time progressed, so did Pookie. His
neurologist wasn't surprised. He'd told me the best thing I could do
for him, and his older brother that has Asperger's, was to get them a
good dog. He said he'd seen children advance and make progress with a
dog that otherwise wouldn't have been accomplished.
A few months after God brought us
Dixie, our daughter was attacked by a much larger dog. Dixie was a
cocker spaniel mix. The other dog was a German Shepard/Lab mix.
Dixie, despite being a fourth of this other dogs size, defended Keara
with a vengeance. I have no doubts that she saved my daughter's life.
At one point, Dixie stuck her entire snout into the other dogs mouth!
Dixie became loved by all the children
that came to visit. Being that I have children on the autistic
spectrum and with health issues, I am often visited by other families
that have children with special needs. Dixie always connected with
them. She offered them a sense of security and calm in a world these
children often don't understand. Somehow, Dixie made everything OK.
When my 14 year old with Aspergers,
Keeg, decided to walk to my parent's house, it was almost dark. I
hadn't realized he had left, but merely thought he was taking a quite
time in “his spot” in the woods near our house. When my daughter
and I began to look for him, it was getting close to dark. He didn't
answer, he wasn't in “his spot”, and we began to worry he was
lost. We walked the drive, calling for him, but to no avail. I
noticed that Dixie wasn't in the house, or outside. I knew that if
Dixie wasn't coming to us when we started to call her, then one of
two things was happening. Either Keeg was hurt and Dixie wouldn't
leave his side, or they were out of ear shot. This realization
prompted me to run back to the house so I could call 911. By now it
was dark, and it was cold out. Keeg was only wearing shorts and flip
flops. He has health issues and is unusually weak. I was panicked. As
I started to call 911, a call came through from my parent's. I heard
Keeg's voice say, “Hey Mom!” He hadn't realized the gravity of
what he'd done. He said that when he started to leave our property
and Dixie followed, he tried to run her home, but she wouldn't leave
him. He said she stayed with him the entire time. At one point he
said he saw some dogs and was scared, but Dixie barked a few times
and that was that. He had gotten scared on the way, and cold, but
Dixie kept him centered and moving forward. He said without her, he'd
have probably hid in the woods on the side of the road. But, Dixie
was there with him and so he knew it would be OK.
After that incident, Dixie got it into
her head that she could leave our yard and try to get to my parents
where she'd walked with Keeg that night. Although she occasionally
wandered to our neighbors home (often invited by the renters that
stayed there), she never went the opposite direction unless leashed.
Yet, for some reason she figured that if she'd gotten to go that
night, she was going to continue. Finally, we quit letting her go out
with the boys unless she was leashed. She spent her time in the house
and at times would drive me insane. She was used to running and
jumping with Pookie, and since she didn't have that outlet outside,
decided to do it inside. Pook of course missed the same play, and
actively participated indoors.
A week ago tomorrow, my husband was
involved in a terrible accident. He suffered a skull fracture and an
epidural hematoma, pooling blood and air pockets that put pressure on
his brain. He was air lifted to a hospital to be seen by a
neurosurgeon. We are blessed to have a large network of prayer
warriors, all who spread the word quickly and got many people praying
for him. He was blessed, and quite surprisingly to all, came home
after only 1 night in ICU, and 1 night on a general floor. He is in
pain, and has memory loss. He also doesn't remember much of what
happens in a day. He has to stay supervised for the most part, as
often he doesn't remember his injuries.
While we were in the hospital, Dixie
was left alone. Although she was fed, watered, and taken out.....she
had not been alone since God brought her to us. I remember my horror
when we got home from the hospital. There was not a square inch of
floor uncovered. Toys from the kids rooms were scattered throughout
the house, mixed with the garbage that had sat in the can unattended
during our hospital stay. I couldn't believe one stressed out dog
could have created such destruction.
I felt bad for having left her cooped
up and unattended. I let her out and stayed with her to make sure she
didn't run off. She stayed right around the house. Apparently her
extended stay inside, only being taken out long enough to use the
bathroom and only seeing someone for 10 minutes a day had fixed her
issue of running off. She stayed close to the house, only venturing
to the end of our personal driveway, then coming back. She was so
happy to see us.
The next day, I had to run into town
to grab some groceries. I couldn't find anyone to stay with my
husband, but had to get him something to eat. I timed my trip so that
he'd be sleeping and rushed to get things done. I came back in aprx
30 minutes. As I rushed to come in and check on him, Dixie jumped
from the van. I checked on my husband, and went out. Dixie stood at
the end of our personal driveway barking. I knew she was barking at
the trespassing hunters. I'd seen their truck on my way in. Despite
continually asking hunters to leave our property and the property
adjoining ours, and explaining that we have to children with Autism,
they still continue to return. Dixie stood at the end of the drive
barking as I carried in groceries. Suddenly, she quit barking and
started wagging her tail. She got excited and her whole back end
started to move back and forth. I couldn't help but smile. Dixie
would get so excited when she was going to get affection that she'd
shake her back end so much she could barely run. She took off down
the drive. I assumed that someone we knew was coming down the drive.
I was wrong. When I got the last of
the groceries in, I went to get Dixie in. No one had come up the
drive and I couldn't figure out what she had taken off the drive so
happy about. She wouldn't answer my call, and I didn't see nor hear
any sign of her.
I found her later. It was dark and I
was driving out the drive. I just happened to get a glimpse of her
green collar as I drove by. My heart sank. I backed up and cut on my
high beams. There was Dixie, laying on the side of the drive in the
grass. My heart sank as I realized she wasn't moving. “She's been
hit by a car” I thought. Then I thought, “She's just hurt. The
vet can save her!” I jumped out and ran towards her.....and then I
saw it. An arrow.....extending out of her. She was dead. My husband
said he was so scared and worried for me. He said it was as if I
crumpled, but was still standing on my feet. He said he'd never heard
anyone scream like that. My heart was shattering....all I could see
was our beloved pet, our family, lying there with that arrow
protruding.
I drove back home and called my best
friend. Halfway up the drive I stopped as my sobs and screams were
wracking me so much that I couldn't drive. I made it home and called
my best friend who advised me to report it to the police. I called
911 and was told a deputy was coming out. I drove down to sit beside
Dixie, worried that the coyotes or other animals would disturb her.
My husband insisted on coming with me, telling me he could never rest
knowing I was sitting there alone. I finally convinced him to go home
and lie down. I drove down the drive to turn around. There were
headlights coming towards me, but as soon as I spotted theirs, they
must've seen me. They turned around rapid fast and took off down the
drive. Instinct made me go after them and I was shocked to see a
small pickup truck, very similar to the one that was there when I'd
gotten home from the grocery store. I wrote down the tag number and
returned to give it to 911, hoping that the deputy coming out would
see them as he passed. When the officer arrived, I told him about the
truck. He had passed them on the way, but had not gotten the message
from dispatch. After getting all the needed information, he told me
that unless they confessed, he couldn't do anything. If they
confessed, the only thing he could do was give me the information so
that I could go to the magistrate for “destruction of personal
property”. I was dumbfounded. These hunters repeatedly trespass
posted private land, lured my dog from our property and shot it, and
nothing could be done. I was told that nothing could be done because
their was a leash law, and my dog wasn't on a leash when he was
killed. My heart sank. She'd been killed within 15 minutes of jumping
from my van. I saw her run down the drive happily to greet her
murderers, and never had a clue what was happening. I even remember
hearing the truck drive up and leave as I was calling out to her, but
never considered that any hunter would ever harm an innocent dog.
Especially not hunters that had already been told that there were two
children with autism living in the home. Did they have no heart?
After the officer left, I made a call
to my best friend. With my husband having a brain injury, he isn't
allowed to lift anything. There was no way I could bury Dixie as I'm
not strong enough to dig through the hard clay rock. She couldn't be
buried until the next afternoon, when a friend of mine would get off
work and come do so. I had to get Dixie to the house and protected
from the wild animals of night. I drove down to where Dixie lay. I
could have walked there in less then 3 minutes, but it was very cold
and I needed the warmth of the van. I took my camera and using the
flash surveyed the area. I could see where the hunters had stood next
to Dixie in the tall grass, even as she stood in the grass beside the
drive that was mowed that very morning. The hunters and Dixie were on
the neighboring property to ours.......property that is private and
posted as no hunting allowed. Using my headlights and the flash of my
camera, I walked a bit further down and saw a well worn path the
hunters had been using to get from their truck to the adjoining
property. I came back and took pictures of Dixie. I wanted to make
sure that somehow her death would not be in vain, and maybe the
photos would help that.
I sat with Dixie until my friend could
arrive. As we lifted Dixie to place her on a piece of wood, I almost
choked. When we lifted her up, we could see the other end of the
arrow. We could see the angle, and how far the arrow protruded from
her. Although I had never doubted that it was intentional, due to her
having been shot beside our drive, it had never occurred to me
exactly how cold hearted these hunters had been. They had stood
directly over her when they shot her. They shot her through the heart
and the evidence of this was pooling around her. Dixie would have
been looking up at them with her adoring eyes, tail wagging so much
that her behind swung from side to side. How could they have looked
at that adoring face and brutally murdered her that way?
We laid her Dixie in the van and
brought her home for the last time. My husband had been building a
storage building next to our home. We put her in there and wedged a
large piece of wood over the door. I laid awake for hours in bed that
night. I just kept seeing those so called hunters standing over her,
with her excited to be getting attention, and the arrow piercing her.
Although I was glad it had been a shot straight through her heart, my
own heart felt just as pierced. I cried throughout the night,
muffling my sobs so as not to disturb my husband who was still in
immense pain from his injuries.
I woke the next morning going over the
needed chores to be done. Then the image of her laying beside our
drive pierced through my mind. I got up quietly, pulled on my shoes
and sweatshirt, and headed out with my camera. I walked this time.
Though still cold, I needed that extra minute to prepare myself. I
had noticed the night before that the end of the arrow with the
quills had been broken off. I had remembered hearing in the past that
hunters mark that end of their arrow with their initials or an
identifying mark. They do this so that they know who made “the
kill”. I searched the area where I'd found Dixie and as I walked
back towards where their truck was parked, I found the broken piece
of the arrow that had the quills. Dixie's blood was still on it. I
found two pieces, laying next to each other. Yet, the very end,
beyond the quills, was missing. The part where the initials would
have been.
I then thought back to their returning
that night. I figured it had to be the same truck, despite it having
been dark and my vision being limited. Why else would they have
turned around so rapidly and taken off like a race car driver down a
curvy gravel road when they saw me? I wondered for a moment why, as
I'd done the night before. I felt that they must've been coming back
to take Dixie's body. I still haven't thought of any other reason
they would have had to return.
I came back home and headed straight
to the shower. I thought back over the last week. Finding out my
eldest son has to have a lung biopsy done, my husband's accident and
injuries, and now Dixie. I felt.....fragile. My husband woke as I
came through our bedroom. I got into the shower and as the water
poured over me, I lost it. The tears wouldn't stop and I was grieving
for so many things. I was grieving for Dixie's life. I was grieving
having to explain it all to my children. I was grieving for their
heartache. I was grieving for all the children that loved Dixie and
would have to be told. At some point, though I didn't notice, my
husband opened the shower door, turned off the water, wrapped me in a
towel and held me. I was thinking of all the ways I might have saved
her. If I hadn't taken her with me, if she'd been on a leash in the
van before I opened the door, if I hadn't carried in groceries first,
if I'd gotten someone else to dog sit while I was caring for my
husband. I must've spoke these out loud because I remember my husband
telling me over and over again that it wasn't my fault.
That afternoon, my two best best
friends came over to help me bury Dixie. James had been there the
first time we saw Dixie, and now he was helping lay her to rest. It
was a very emotional time for us and anyone watching the three of us
would have surely wondered as to our sanity. It took a long time to
shovel through the clay rock. When it came time to get Dixie ready
and to lower her, my dear friends sent me on an errand so that I
wouldn't have to see. By the time I got back, the grave was already
half way filled in.
Yesterday evening my children came
home. Due to their father's injuries, they had not come home yet. I
spent the evening consoling Pookie. After he fell asleep, exhausted
from his cries, our older two children came to me. They cried for
hours before falling into restless sleep.
Dixie was a blessing to our family. I
will never be able to understand how anyone could take the life of an
innocent. I've never been able to understand how someone could get so
angry at another that they would intentionally hurt their children.
Maybe these so called hunters thought that by killing my children's
therapy dog, that I would leave them alone and let them hunt here.
Maybe they figured I'd settle for keeping my kids inside at all times
for fear of them hunting next to my home. I guess I'll never know
what they were thinking. Part of me hopes that they will always see
her beautiful eyes and her wagging tail begging for love as they took
her life. Yet, what I really want is for pets and children to be
forever safe from these people. I want to make sure that somehow,
these people are never allowed near my home again. I want to know
that my children can jump on their trampoline, ride their bikes, and
check the mailbox without being worried that they'll be mistaken for
game. My children always wear hunter orange vest when venturing into
the forest, even the forest on our own property. Should they have to
wear it just to jump on the trampoline or to check their own mailbox?
I pray that somehow, some way, our
home is restored to the dream home that we envisioned it to be. I
pray that the children with special needs, and even those without,
can come here again and not worry about whether or not they may be
within feet of a hunters bow or gun. I pray that once again this home
and these woods can become that which God intended it to be.........
paradise.
RIP Dixie, You will always remain in our hearts. We love you!
Tags
asperger's,
aspergers,
autism,
Dixie,
hunters,
murdered,
therapy dog
Sunday, October 9, 2011
Death? .... Literally!
Death is never easy to explain to a child. However, for children with autism, it can be even more difficulty. Children with autism have a hard time understanding abstract concepts. Then, there is the fact that they take spoken words very literal. Then of course, with the processing delays that some children with autism have, it may be days, weeks or months before you find out exactly how what you said was translated to your child. I found out last night, several weeks after we had discussed death!
"I love you Brandy!" Pook expressed to his best friends mother. She and I both melted and smiled. As she came towards him to hug him, he declared, "I'm gonna cut your head off and put you in my heart forever!"
She froze. I froze. She looked at me and asked, "What did he just say?"
"I'm gonna cut your head off and put you in my heart forever!" he said again, making sure we understood him.
Frantically, I searched through my own memories. When had we talked about dying? When had we talked about heads being cut off? When had we talked about people being in your heart forever?
Then, it hit me. I had told Pook several weeks ago during our talk about death, that when someone you love dies, they stay in your heart forever.
With Halloween around the corner, Pook has noticed the gruesome yard displays and asked questions about them. Hence, the chopping off of head conversation and how it would resort in death. (I'll stay off my soap box about gruesome Halloween displays for the moment)
So, in Pook's mind, if he wanted someone he loved to be with him forever, they had to die. Then they'd be in his heart forever.
I have no doubt that my loving sweet child had no intentions whatsoever of harming anyone. He was just trying to tell her that he loved her so much that he wanted her in his heart forever. But then, I doubt we'll be seeing that sentiment expressed in his words on any Valentine cards!
"I love you Brandy!" Pook expressed to his best friends mother. She and I both melted and smiled. As she came towards him to hug him, he declared, "I'm gonna cut your head off and put you in my heart forever!"
She froze. I froze. She looked at me and asked, "What did he just say?"
"I'm gonna cut your head off and put you in my heart forever!" he said again, making sure we understood him.
Frantically, I searched through my own memories. When had we talked about dying? When had we talked about heads being cut off? When had we talked about people being in your heart forever?
Then, it hit me. I had told Pook several weeks ago during our talk about death, that when someone you love dies, they stay in your heart forever.
With Halloween around the corner, Pook has noticed the gruesome yard displays and asked questions about them. Hence, the chopping off of head conversation and how it would resort in death. (I'll stay off my soap box about gruesome Halloween displays for the moment)
So, in Pook's mind, if he wanted someone he loved to be with him forever, they had to die. Then they'd be in his heart forever.
I have no doubt that my loving sweet child had no intentions whatsoever of harming anyone. He was just trying to tell her that he loved her so much that he wanted her in his heart forever. But then, I doubt we'll be seeing that sentiment expressed in his words on any Valentine cards!
Monday, September 26, 2011
Central Auditory Processing Disorder
Pook was evaluated for Central Auditory Processing Disorder a few weeks ago. Today, the results of the evaluation was mailed to me.
First, let's answer the question, what is Central Auditory Processing Disorder (CAPD). Part of CAPD is Auditory Decoding Deficit. A child with this part of CAPD has difficulty analyzing the difference between speech sounds. This child will have trouble with task that require him/her to discriminate and analyze sounds. A cihld may "mis-hear" words, such as mouth for mouse.
Another part of CAPD is Auditory Integration Deficit. This means that their is poor communication between the left and right sides of the brain, and/or between various sensory centers in the brain. For example, if a child is given a pattern of series of tones (example: high-high-low), both sides of the brain must work together in order for the child to distinguish this. The right side of the brain gives the child the pattern and the melody while the left side of the brain adds the words "high" or "low". If a child can't name the pattern, but can reproduce the melody, it tells us that he or she has good melody skills, but poor communication between the two parts of the brain. We've seen this with Pookie often. He loves music and will often sing a song he has heard afterward. Although he has the melody perfect, the words never match up to what he has heard, even if he's heard it often.
Another example is a child that has difficulty using rhythm and meter cues. For example, he/she can rhyme words, but has difficulty with pauses, beats, and rhythm of a song or nursery rhyme.
So, now that we know a small bit of info about CAPD, let's see how Pookie did. Due to his age, his test were limited. He'll go back in 2 years to get more testing. In the meantime, here is what we do know.
Pook was given three test, all in a sound booth with earphones on. The first test was where two different sentences were given to him at the same time. One sentence in one ear, while a different sentence was in another ear. On this test, he showed a definate strength in one ear over the other, but scored within normal limits. Honestly, I was surprised as I figure this would be difficult for me to do!
The next test is where words are spoken at a slightly louder volume then the background babble. Pook had to tell what the word was that was spoken to him while he heard background babbling. Pook scored in the .1 percentile. Note, there is a (.) in front of that 1. So, 99.9 percent of children scored higher then him on this test.
The last test performed is where pook had to repeat sentences that had been altered by compressing the time between sounds. Again, he scored in the .1 percentile.
Pook has difficulty understanding speech in the presence of background noise. He has auditory processing deficits in both Phonemic Decoding and Integration. He needs speech therapy that emphasizes phonemic detection, discrimination, synthesis and analysis. He will benefit from repetition, repeating but nto rephrasing verbal communication. he'll benefit from reducing auditory overload by giving him "listening" breaks (periods of time where there is no auditory stimulation and it's quiet). Pook can not be given auditory and visual directions at the same time, but will benefit from either individually. Activities that use both parts of his brain, such as chess, gymnastics or dance would be good for him. He is to be given extra time for tasks and responses and should have OT for sensory integration.
Recognizing these issues, and being given specific ways to help him should improve his (and the family's) quality of life. There is a new level of patience that I, and those who interact with him, is going to have to reach. A level of patience that I truly believe will only come through God Himself as not a day goes by that I don't feel my patience whittled away.
I must admit, the fact that his percentile scores were .1 has been quite overwhelming. It tells me that Pook needs alot of assistance. It tells me that once again, I'll have to sink into research to find the best way to help him reach his full potential. It tells me that I must rely on others for their support and understanding.
On a different note, I can't help but wonder........ how is it, that with all these problems, he can still overhear a "bad" word, process it just fine, and then repeat it at the most inopportune moments? ;-)
First, let's answer the question, what is Central Auditory Processing Disorder (CAPD). Part of CAPD is Auditory Decoding Deficit. A child with this part of CAPD has difficulty analyzing the difference between speech sounds. This child will have trouble with task that require him/her to discriminate and analyze sounds. A cihld may "mis-hear" words, such as mouth for mouse.
Another part of CAPD is Auditory Integration Deficit. This means that their is poor communication between the left and right sides of the brain, and/or between various sensory centers in the brain. For example, if a child is given a pattern of series of tones (example: high-high-low), both sides of the brain must work together in order for the child to distinguish this. The right side of the brain gives the child the pattern and the melody while the left side of the brain adds the words "high" or "low". If a child can't name the pattern, but can reproduce the melody, it tells us that he or she has good melody skills, but poor communication between the two parts of the brain. We've seen this with Pookie often. He loves music and will often sing a song he has heard afterward. Although he has the melody perfect, the words never match up to what he has heard, even if he's heard it often.
Another example is a child that has difficulty using rhythm and meter cues. For example, he/she can rhyme words, but has difficulty with pauses, beats, and rhythm of a song or nursery rhyme.
So, now that we know a small bit of info about CAPD, let's see how Pookie did. Due to his age, his test were limited. He'll go back in 2 years to get more testing. In the meantime, here is what we do know.
Pook was given three test, all in a sound booth with earphones on. The first test was where two different sentences were given to him at the same time. One sentence in one ear, while a different sentence was in another ear. On this test, he showed a definate strength in one ear over the other, but scored within normal limits. Honestly, I was surprised as I figure this would be difficult for me to do!
The next test is where words are spoken at a slightly louder volume then the background babble. Pook had to tell what the word was that was spoken to him while he heard background babbling. Pook scored in the .1 percentile. Note, there is a (.) in front of that 1. So, 99.9 percent of children scored higher then him on this test.
The last test performed is where pook had to repeat sentences that had been altered by compressing the time between sounds. Again, he scored in the .1 percentile.
Pook has difficulty understanding speech in the presence of background noise. He has auditory processing deficits in both Phonemic Decoding and Integration. He needs speech therapy that emphasizes phonemic detection, discrimination, synthesis and analysis. He will benefit from repetition, repeating but nto rephrasing verbal communication. he'll benefit from reducing auditory overload by giving him "listening" breaks (periods of time where there is no auditory stimulation and it's quiet). Pook can not be given auditory and visual directions at the same time, but will benefit from either individually. Activities that use both parts of his brain, such as chess, gymnastics or dance would be good for him. He is to be given extra time for tasks and responses and should have OT for sensory integration.
Recognizing these issues, and being given specific ways to help him should improve his (and the family's) quality of life. There is a new level of patience that I, and those who interact with him, is going to have to reach. A level of patience that I truly believe will only come through God Himself as not a day goes by that I don't feel my patience whittled away.
I must admit, the fact that his percentile scores were .1 has been quite overwhelming. It tells me that Pook needs alot of assistance. It tells me that once again, I'll have to sink into research to find the best way to help him reach his full potential. It tells me that I must rely on others for their support and understanding.
On a different note, I can't help but wonder........ how is it, that with all these problems, he can still overhear a "bad" word, process it just fine, and then repeat it at the most inopportune moments? ;-)
Thursday, July 28, 2011
Holy............
"Holy Crap!!!"
"Pookie! What did you just say?" I asked.
"I say 'holy crap'", he replied.
I explained to Pookie that we don't say that.
Several days later......................
"Holy Cow!"
"Pookie, didn't I tell you not to say that?" I asked.
"No, you say not to say 'holy crap'. I not say 'holy crap'. I say 'holy cccccoooowwww'". He enunciation the cow very slowly so that I'd understand the difference.
"Well, you can't say that either. You can't say holy anything. You can call God holy and that's it."
"What can I say? Holy what?" he asked, seemingly confused.
"Holy NOTHING!" I told him. He nodded, smiled, hugged me and said, "OK Mama."
Several days later..........................
"Holy Nothing!"
I give up.
"Pookie! What did you just say?" I asked.
"I say 'holy crap'", he replied.
I explained to Pookie that we don't say that.
Several days later......................
"Holy Cow!"
"Pookie, didn't I tell you not to say that?" I asked.
"No, you say not to say 'holy crap'. I not say 'holy crap'. I say 'holy cccccoooowwww'". He enunciation the cow very slowly so that I'd understand the difference.
"Well, you can't say that either. You can't say holy anything. You can call God holy and that's it."
"What can I say? Holy what?" he asked, seemingly confused.
"Holy NOTHING!" I told him. He nodded, smiled, hugged me and said, "OK Mama."
Several days later..........................
"Holy Nothing!"
I give up.
Sunday, July 24, 2011
Red Red Red
Pook has never really been fond of red. He won't eat a red sucker, won't wear red unless it's camouflaged as something else (like spiderman), and won't eat red foods except for strawberries. He hates blood because it's red. Yet, today, he reached a new level of aversion to red.
Yesterday Pook was swinging on a rope. The rope scraped the top layers of skin off of both his middle fingers. Nothing serious in the scheme of childhood injuries and even less serious compared to the injuries he's had. Today though, the layers of hanging skin dried out and necessitated being cut off. This revealed the new and somewhat still raw flesh underneath. This flesh was..................you got it...........RED.
Hence began the several hour long battle. Pook insisted that we take him to the doctor to have his two fingers cut off. Yep, you read right. CUT OFF. He kept screaming that he didn't want the red touching him. He had to have the red off. He begin biting his fingers, clawing his legs, and slamming into the sliding glass door. I held him providing deep sensory input as long as I could, but after a lengthy period of his not calming down, we decided to strap him in his car seat and go for a ride. (while in car seat injury to self is minimal and easier to prevent) We took him to a playground and got him a slushy which helped distract him temporarily. However, in the bathtub at home later in the evening, he saw his fingers again and melted. We spent the next hour holding him with his begging us to take him to the doctor to have his fingers cut off.
Pook finally fell asleep in a state of pure exhaustion from his thrashing and screaming. I DREAD tomorrow morning.
Yesterday Pook was swinging on a rope. The rope scraped the top layers of skin off of both his middle fingers. Nothing serious in the scheme of childhood injuries and even less serious compared to the injuries he's had. Today though, the layers of hanging skin dried out and necessitated being cut off. This revealed the new and somewhat still raw flesh underneath. This flesh was..................you got it...........RED.
Hence began the several hour long battle. Pook insisted that we take him to the doctor to have his two fingers cut off. Yep, you read right. CUT OFF. He kept screaming that he didn't want the red touching him. He had to have the red off. He begin biting his fingers, clawing his legs, and slamming into the sliding glass door. I held him providing deep sensory input as long as I could, but after a lengthy period of his not calming down, we decided to strap him in his car seat and go for a ride. (while in car seat injury to self is minimal and easier to prevent) We took him to a playground and got him a slushy which helped distract him temporarily. However, in the bathtub at home later in the evening, he saw his fingers again and melted. We spent the next hour holding him with his begging us to take him to the doctor to have his fingers cut off.
Pook finally fell asleep in a state of pure exhaustion from his thrashing and screaming. I DREAD tomorrow morning.
Saturday, July 23, 2011
Shoes
Every mother that has a child with sensory issued understands the dilema with shoes. Shoes "feel weird", "hurt", and overall just don't want to be worn. We've learned to get very creative. One summer, Pookie wore golashes all summer long. They literally fell apart! One winter, he wore slippers. As an infant he wore moccasins.
Two weeks ago, a friend gave us some hand me down clothes. Pookie never wears "new" clothes because they are to rough for him. I'd have to wash them every day for two weeks to get them soft enough that he'd consider wearing them, and even then it's usually no. So, we live on second hand and hand me down clothing for him. With the clothes came a pair of new balance tennis shoes, barely worn, with shoelaces. Shoelaces have always been avoided due to his obsession with ropes and strings (we all still hide our shoes with laces). Pookie however loved that his "best friend" gave him these shoes and wants to wear them all the time. He insists that they make him "special" and they are "good cause N on the side".
HOWEVER, Pookie can not stand that the shoelaces never tie perfectly.
Step 1: Stretch out the laces and make sure the tips line up with each other. If not, relace the shoes until they do.
Step 2: When making the loops, they must be of equal size with each other. This can not be close, or almost, but PERFECT. You must try over and over and over again to make it just right. We often don't make it past this point and end up in full melt down mode.
Step 3: After getting the two loops on the shoe to match, you must then get the left over laces to be the same length. This is extremely difficult since if you pull one lace, it shortens the loop. This means the loops are no longer equal and we proceed to either Step 1 or 2 depending.
Step 4: Once the two loops and laces match on left shoe, repeat steps for right shoe.
Step 5: Now it's time to make sure left shoe and right shoe have loops and laces the same size.
EVERY time he wears these shoes, he has a complete meltdown and we run late. I've tried hiding them, but he insists he has to have his "N shoes". Today, after he calmed a bit from his meltdown I said, "I have an idea. Let's go to the store today and buy you some shoes like that without shoelaces". Translation: We'll pick up some athletic shoes that don't have laces. What Pookie translated it as: We'll go buy a pair of shoes that looks EXACTLY like these but that do not have shoelaces.
So, if any of you happen to see a pair of New Balance sneakers, gray black and orange, with no laces......how bout letting me know.
Two weeks ago, a friend gave us some hand me down clothes. Pookie never wears "new" clothes because they are to rough for him. I'd have to wash them every day for two weeks to get them soft enough that he'd consider wearing them, and even then it's usually no. So, we live on second hand and hand me down clothing for him. With the clothes came a pair of new balance tennis shoes, barely worn, with shoelaces. Shoelaces have always been avoided due to his obsession with ropes and strings (we all still hide our shoes with laces). Pookie however loved that his "best friend" gave him these shoes and wants to wear them all the time. He insists that they make him "special" and they are "good cause N on the side".
HOWEVER, Pookie can not stand that the shoelaces never tie perfectly.
Step 1: Stretch out the laces and make sure the tips line up with each other. If not, relace the shoes until they do.
Step 2: When making the loops, they must be of equal size with each other. This can not be close, or almost, but PERFECT. You must try over and over and over again to make it just right. We often don't make it past this point and end up in full melt down mode.
Step 3: After getting the two loops on the shoe to match, you must then get the left over laces to be the same length. This is extremely difficult since if you pull one lace, it shortens the loop. This means the loops are no longer equal and we proceed to either Step 1 or 2 depending.
Step 4: Once the two loops and laces match on left shoe, repeat steps for right shoe.
Step 5: Now it's time to make sure left shoe and right shoe have loops and laces the same size.
EVERY time he wears these shoes, he has a complete meltdown and we run late. I've tried hiding them, but he insists he has to have his "N shoes". Today, after he calmed a bit from his meltdown I said, "I have an idea. Let's go to the store today and buy you some shoes like that without shoelaces". Translation: We'll pick up some athletic shoes that don't have laces. What Pookie translated it as: We'll go buy a pair of shoes that looks EXACTLY like these but that do not have shoelaces.
So, if any of you happen to see a pair of New Balance sneakers, gray black and orange, with no laces......how bout letting me know.
Friday, July 22, 2011
OVERWHELMED in Holland
Today's blog is so intricately woven with multiple aspects of my life, that I'm going to post it on both Paths From My Soul and Paths From Pooks Soul. I'm pretty sure this blog rivals all my other to be the longest post yet.
I honestly don't know where to start. There is only one word to describe how I've been feeling lately...........
OVERWHELMED
I know that God is going to carry my family through this time as He has all others. My faith is not doubting. I just know that the journey through is hard and difficult.
It's hard to believe all that has happened in 2011. I decided to come off all my prescription medications and now only take Ibuprofen and use Lidoderm Patches. I take tons of vitamins and supplements. I feel that I have a much higher quality of life, though the pain can be enough for me to consider ways to render me unconscious at times. I refuse to take immune suppressants, steroids, narcotics, muscle relaxers, or any of the other junk most docs try to pump me full of. Stopping all meds has been an emotional time for me. I still have so many days where I feel like I'm going through withdrawl. I never thought the negative effects would last this long.
I've also started to have a significant worsening of my short term memory. I ask hubby each night to tell me what we did the day before, in an effort to jog my memory and keep the information where I can recall it. It does seem to help a bit, but the majority of my days are lost from memory. I write down everything I do in a calendar, in the hopes that I can recall it. Due to the memory lapses, I find that I often offend people I don't intend to. I have always been a person of my word, yet here lately it seems I find myself not following through on things I've said I would do. Not because I don't care and don't want to..........but because I don't remember. My memory loss has terrified me so much, that as soon as a thought pops into my head, I say it for fear of forgetting it. This comes across as so terribly rude and I don't know which is worse.......interrupting to get the thought out before it's loss forever into the abyss or taking notes every time I speak to someone (I do this with EVERY phone call, therapist and doctor visit, etc). Those closest to me have noticed the differences that have come over me in the last several months, but I think they are at as much of a loss as me.
My physical body is going through an upheaval. If this hadn't happened so many other times through the years, I'd think it was due to my stopping the prescriptions, but I know better. The pain has started to settle deep within my joints. My Reynaud's is attacking me even though it's hot weather instead of cold. The shooting stabbing pains in my head are coming with more frequency even as my vision issues have resolved themselves. The strength in my hands are almost completely gone and though I'm mentally clear enough to drive most of the time (I do still have days where I end up completely lost on a road I've traveled thousands of times in my life), the pain that results from driving is agonizing. I'm hoping a vehicle in better shape will not be as hard to handle (the frame on the truck is warped and it always pulls to one side while driving, plus transmission issues require changing the usual automatic gears by hand).
The housework is piling up and I can't stand looking at it. Keara is a champ at helping me around here, but I think she's completely overwhelmed and I regret that she seemingly has no childhood. Between her caring for her younger brother, caring for me, and helping me carry the burden of chores....there isn't much time left for her. Time for her to spend with me alone....that doesn't even happen anymore.
Yet, honestly.....the most stressful thing in my life right now isn't even my health or my ability to do all that needs to be done. You see, I went on and on above because I hesitate to really reach into the depths of my being and write the part that is tearing away at me piece by piece.
Most of my readers know that our 5 year old is Autistic. It's high functioning which is a blessing in that he can reach a much higher potential then many children with Autism. It sometimes makes it harder when dealing with other people because the vast majority of people assume that if you look "normal" then you should act "normal". I've witnessed this first hand myself. When I had to use my electric wheelchair, people treated me different. It drove me crazy at the time because there was so much I wanted to do for myself that others wouldn't let me. Other people's expectations for me altered because they saw me in a wheelchair. They had more compassion and were even willing to volunteer things like bringing us meals, helping clean the house, and babysitting in our home so I could get a break. Once I was able to walk around again, even though I still battled the exact same health issues and was still severely limited in my abilities, the expectations of others jumped right back up to the point prior to my ever getting sick. This is where Pookie is. People look at him and see a bright, active child. Therefore, they expect him to behave like a typical child. They don't know that the evaluations that we've recently gotten back say that he has "mild to moderate autism", "impaired vocabulary", visuospatial issues, processing delays, severe sensory integration issues and more! Worse yet, many don't seem to care even if they do know!! They don't look at Pookie and see how far he has come. They don't see how much he really does care of how after he hurts someone, he comes and tells me he wishes that he never hurt anyone. They don't know that he cries beside me saying he wishes he were dead because his body does things he doesn't want it to do (this is due to processing delays...he acts impulsively because his brain processes the information to slowly and only afterward does his brain process the alternate ways he should have dealt with a situation).
Don't get me wrong...........we have some really great, exceptional friends in our lives who are very supportive and understanding. They've made all the difference.
Yet now (finally, the meat of this post), I don't think any of us know what to do with the latest diagnosis. Not of Pookie, but of my eldest son. You see, Keeg has, up until recently, been the perfect and most exceptional child. I know you think I'm biased (and I am) but there was just so much about him that was unique. At 2 1/2 years old, he taught himself to read!! I was teaching him letters and sounds and he already was reading Doctor Seuss books. By the time he was in Kindergarten, he had already tackled his first Isaac Asimov novel (not an easy read for many adults even). He was super bright when it came to intellect and I watched him carry on conversations with his medical specialist that blew everyone in the room away. I can not tell you how many times someone told me that he was the smartest child they'd ever seen. I was PROUD. It seemed like no matter all the wrong I'd done, I'd been blessed with a child that was an enigma. Keeg always battled some pretty severe health issues, but his behavior was always above and beyond. He was the child you look at in the store and stop the mother just to say, "You have the best behaved child I've ever seen". He was the child you told once and once only. He was the child who always seemed to know who was upset and would ask what was wrong. He was the child who always did his schoolwork, always kept his room clean, and always ate his vegetables.
A year ago I started having issues with him. He was always reading. He'd read the tags in laundry, he'd read the labels on the cans in the pantry, he read and read and read. He could no longer complete tasks or chores because he stopped to read everything. I even caught him a few times reading the garbage in the kitchen can. He'd walk by and it would catch his attention so he'd stand over the can, peering in and reading. I would have to tell him over and over and over again to do something before he would complete it. He would tell me he didn't hear me, or didn't remember. I would ask him to complete a chore and hours later would be appalled that it wasn't done, even after he told me he completed it. He'd walk into the room, look around and dumbfounded ask me, "what else needs to be done?" I was at my wits end. How could the once perfect child suddenly be this rebellious, disobedient teenager?? I talked to friends with teens and they assured me that this was just part of growing up and eventually (albeit a long eventually) he'd outgrow his rebellious streak. How did I not see what was really happening?
About 4 months ago, Keeg and I were home alone. I told him that I was going to give him a chore and I was going to observe his completing it. Each time he stopped to read, I would redirect him. He was to try his best not to read, and if he read something and I didn't notice, he needed to tell me. About 3 minutes into this, he was crumpled on the floor, tears streaming down his face, his hands pulling at his hair, and saying, "I can't do this! I have to read! I have to! I have to!" I sat, completely blown away. The agony in his cries froze me. Something was wrong....terribly wrong....and I didn't know what it was.
I talked to several professionals I've become friends with through the years and heard lots of different ideas. I decided that the first step was to get him in with a professional therapist. Someone that would address the needs of our family and help Keeg deal with the stress he was going through. I got a referral from a friend and set up our first appointment. The doctor had me feel out a bunch of assessment forms online for Keeg so that he could review them before our appointment. When my husband and I went to meet the doctor, he handed me a scholarly article to read about Asperger's. Confused I looked at my husband. Why would he give me this when I'd already told him our youngest was diagnosed with High Functioning Autism and not Asperger's? The doctor let me know that the information wasn't for Pookie...........it was for Keegan.
The foundation of my world shook. Reality started to spin and meld. I sat in the midst of the chaos, frozen in a warp that wracked my awareness of all. This isn't what I was supposed to hear. I was supposed to be told that he was ADD with maybe some OCD. That's what I was prepared for. Asperger's??? NO NO NO....my youngest son is on the Autism spectrum....not my oldest! I pushed myself to read the article he had handed me, floored to find out that it addressed how it's actually COMMON for children with Asperger's to not be diagnosed until they are in their teens. I managed to make it through the appointment, and back out to the truck. My first words to my husband after we pulled away was, "How could I have missed this?"
I grew up with family members and friends that had special needs. I went to college for Early Childhood Education with a special interest in Special Needs. I've volunteered, helped out and fund raised for various organizations that help with Special Needs. I've spent the last 5plus years studying Autism Spectrum diagnosis, Asperger's included. And then the lighbulb went off............how many times did I pull Keegan over to me while researching and say, "Hey, this sounds like you!"
Looking back..........I missed so much. The way that Keegan never really cared much for affection. Yes, he'd let me hold him, hug him, and give him kisses as a child. But deep down I always felt that he was only tolerating it for my benefit. The way that his room always stayed so clean because he didn't really own much of anything. He would always ask me to give his toys to children that didn't have any. Proud as can be, we'd do so. It's only in hindsight I see that it was because he didn't care for the typical toys children played with. His room has always been minimal in decoration and toys. For as long as I can remember he's only wanted an alarm clock with radio, a lamp, his hotwheels and a chess set. Looking back, I can see how unusual this is for a 5 year old.....but at the time I just saw it as a sign to his immense intellect. Keegan has always been particular about his clothing. He has always preferred khaki pants and shorts after he went to a charter school that required school uniforms. He likes long socks with the tops pulled straight up his legs. Keegan never really had any sense of style, but being a single mom that didn't really have any other Dads to chat with, I just thought it was a guy thing. There were always gross motor skill delays and clumsiness...........he had really big feet and I chalked it up to that. I never noticed that Keeg didn't recognize personal space until he was older. When a small child sits down immediately next to someone, it's cute. It's not a red flag that he doesn't realize that people have personal space. Keeg has never known a stranger.....NEVER. It's not uncommon for his interactions with someone to start off with 20 questions. I just thought he was curious and trying to feed his intellect. When my husband and I married two years ago....Keeg had pretty much spent his life caring for me and his little sister (due to my own health issues). He'd been the man of the house. My new husband, his now step-dad, sat him down before our marriage and told Keeg that he was proud of him for all that he'd taken on through the years. He was proud of him for the way he took care of me and his sister. Now, he could just relax and be a kid! He could play and have fun. Once Keeg accepted this, play he did. My husband asked me then if I noticed Keeg's play. Did I notice that he played like a young child? Did I think there was something wrong? Did I notice that Keeg had gone from one end of the extreme (never playing) to the other end of the extreme (continuously playing)? Did I think it unusual that Keeg's imaginary play was immature yet intensely intelligent at the same time? Nope.........I didn't think there was a problem. He'd spent years taking care of me and his sister and now was just letting out all those years of pent up play. Besides, he was altering his play to match that of Pookie to help keep Pookie entertained. He just continued the same games when Pookie was otherwise entertained, right?
I could go on and on. You see, I've had 3 weeks and 2 days since the first doc told me he thought Keeg had Asperger's. Since then we've met with a pediatric neurologist who has all but confirmed the original therapist ideal. He's scheduled the appointments necessary to get the "official" diagnosis. Keeg was admitted into the hospital for unrelated tests, and numerous nurses and therapist he came in contact with assumed he'd been diagnosed with Asperger's long ago. (My mind screamed REALLY? REALLY? REALLY? the entire time). A child life specialist told me that her brother has CP and mild mental retardation and that Keeg reminds her so much of him. She said their mannerisms are identical. She said this with the sweetest affection for Keeg and her brother that I was deeply moved, yet inside I could feel the vibrations resonating through my body as my brain screamed "WHAT? MY SON? HOW DID I MISS THIS?"
Thursday, Pookie went for another evaluation with a speech therapist. I had to meet with the OT there so when Pook didn't want to go back with the therapist alone, I sent Keeg with him. When it was time for me to meet with the therapist, she wanted to make sure I'd realized that Keeg had special needs as well. Again, my mind screamed "DID EVERYONE SEE THIS BUT ME?"
There are always times in a parents life that you feel like a failure. That there were things you missed, things you should have done differently, things you should not have done at all. Yet, I can honestly say that nowhere in my 14 years of parenting have I felt so totally off the mark. My son has lived with me for 14 years....his entire life....and despite all my knowledge and training, I missed that he has Asperger's. I don't care that it is COMMON for children to miss diagnosis till teen years...........THIS IS MY SON. My firstborn. It makes a difference somehow.
Each day I make so many mistakes. I am trying so hard to change my perspective, to see Keeg as who he is and not what I always dreamed he would be. I'm trying so hard to realize that I'm in Holland and that Holland has so many things to offer (click on the blue word Holland if you don't know what I mean). I have to stop myself and apologize a thousand times each day because I realize I reacted to him without realizing his actions weren't intentional, that he didn't understand, and that he was doing exactly what I said just as literal as I said it.
I try not to think about his future right now. Don't get me wrong.......I'm doing everything I need to so that he gets the best of everything and reaches his full potential. I know that he can still be and do anything he wants to and that Asperger's is not a limit on this. Yet, since before he was born I'd dreamed of his future. When he was 2 he told me he wanted to be a doctor and didnt' sway from this except for when, at age 4, he decided to be a missionary. He talked of working at NASA so that he would have the means to reach the goal of missionary doctor. Those dreams haven't changed...........but the paths to get there are forever altered. It's not a bad thing......... but change is always hard for us adults. Selfish as it is, my life was always so chaotic there were only a few constants I felt I could depend on and those were God and my children. That hasn't changed.....but for me to be the mother Keeg needs, I have to change my entire perspective and outlook. I have to let go of my dreams to visit Paris and find the beauty of Holland. Ironically enough, when I read "Welcome To Holland" the first time I didn't really understand the full impact of it. I'd known since I was pregnant with Pookie that something "wasn't quite right" and the moment he was born it was obvious he had some type of special needs. I read "Welcome to Holland" shortly after Keeg's initial diagnosis and suddenly it all made sense.
I know that through all these things God will make sure our needs are met and dreams fulfilled. This is going to be a beautiful and joy filled journey. Yet, we all must mourn the things in life we have lost..............even when the door God has opened for us is so much more beautiful, amazing and breathtaking.
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