Wow this is a loaded subject--- I cannot tell you how many times I have seen Dakota "blow up" and the first thing that comes to my mind is "where the hell did that come from?" It been a years on this journey and I feel like I have an answer --now. I guess I consider it "on the job training" . ....Again I hesitate to say, answer but more like observation and summation---
Additionally among many of the Autism support groups online and Autism blogs you read over and over parents and caregivers having the same remark or reaction: {out of context and totally generic} My son just starts pinching or biting for NO APPARENT REASON
OR
My daughter just started banging her head for NO APPARENT REASON
In my Humble Opinion I do not believe that these actions have NO APPARENT REASON--we may not be able to see what it is that is bothering them or we may not understand their language but in my heart I believe that these actions absolutely have a purpose.
Yesterday was what I call a "I should have had a V-8 moment"-- Don't know if you remember the commercial years ago where the person suddenly discovers that the choice they made should have been the V-8 and they hit their head with an open palm and say "I should have had a V-8!" Well yesterday I was attempting to get Dakota to go bowling-which has been a preferred activity in the past....however for the most part I have always made arrangements for him to go with his friend and mentor Brad and one or a couple of peers -- to develop his independence and let him get away from Mom for an afternoon--Well Brad has unfortunately passed away and since then he has been resistant to bowl but has done it a few times-- not with much success but at least done it--- So fast forward to yesterday and I drag out his bowling ball and all of a sudden he FLIPS OUT.......he swacked at me and started to scream --and I found myself saying AGAIN "where did that come from ??? that was for NO APPARENT REASON." So the wheels start grinding in my head and I am trying to analyze what triggered this behavior--- --In the meantime I have found that the best thing is to let him "defuse" a bit by letting him be; while my mind ungulates all the factors-- within about 15 minutes he started crying and before too long it was painful gut wrenching emotion--- I asked him what he was feeling and why didnt he want to go. After about 10 minutes he professed "hes gone , he left me and I cant see him" I knew right away he was talking about Brad----- It was really the first time he mourned the loss of his friend. Brad has been gone almost 2 years and it has taken this long for him to come full circle to realize exactly what has happened --- then he asked me is Brad was with his grandpa and I told him that hopefully they were there together and on some level they were watching over him{Dakota} from the "other side".
I guess the point of all this is my opinion that there IS A REASON for the biting.pinching, hitting, screaming,running, eloping, spitting,or whatever behavior you might encounter. God didnt make these children and adults with out feelings and emotions he just left out the ability to portray them . This is their disability and I guess on some level we have to be "super" human to realize and recognize that their actions are purposeful/ We have to be the "shaman" who deciphers "the code"
The next time something like this happens just take a deep breath and say to yourself "Ok theres something going on and I am gonna do my best to figure it out-" It doesn't always come to you in the moment sometimes it will be hours or days later when you finally have that "V-8 moment" Leaving yourself open to that and knowing there is a reason eliminates shutting yourself down and not being receptive to answering your own question==="where did that come from?"
Doing that helps you be a better caregiver but more importantly validates the individual. It also opens the door to teach better ways of communication . When they "get" that you understand them they can make improvements in their ability to tell us what they are feeling .
Just remember its NEVER FOR NO APPARENT REASON!
Sunday, May 27, 2012
Wednesday, May 16, 2012
"Stuff" I dont like to write about!
I woke up yesterday with a few scratches and scrapes and even a light bruise--- These are the things that create such complicated feelings and emotions in those of us that are caregivers.Dakota has had a couple of fairly aggressive days and although I am confident of the triggers { will write another post on triggers --soon to come} ; I believe that we all second guess our ability to "mind read" what our kids are going thru.When you live with Autism the years seem to give you perspective and observational skills that make you feel more "sure" about what is going on. BUT when you hit a day or days, sometimes, weeks, months or years where you are facing behaviors that make your kid crazy YOU WILL ALWAYS SECOND GUESS YOURSELF. Even more you often shutter to admit or mention these events to anyone. Not because of shame but moreso because of the inability of the typical community to grasp that these behaviors are what the disability is. These are the things that people referr to as"what goes on behind closed doors". Its not that it is abuse or something unacceptable, it is merely this crazy disorder making the brain inside our kids go WHACK. They have no filter, no ability to be angry without being physical . There is such a huge feeling of loss of control it is enough to drive you to be "provoked " by the behavior. Often times the best and quickest resolution is NO ACTION and believe me it is often times extremely difficult NOT TO REACT. {AND we are the caregivers that get this disorder can you imagine how Joe Q. Public would react?}
I think the purpose of this post is two fold---1. to speak to those who deal with and live with Autism --who have had days like these and say -- its is part of the nasty, ugly, disgusting , son-of-a- bitch disorder and "this too shall pass"--- Its OK and we do not live in an Ozzie and Harriet world where everything and everybody is perfect-- so do not be ashamed and do not be afraid to talk about it--this is a learning process for all of us and we have to allow the community to learn from us.
2. for the community or public side of this is that our kids are not monsters, that they are not INTENT on hurting or defacing property --that this IS THE CONDITION OF THE DISABILITY. That their fear or shunning of individuals who have Autism is without merit and that if they would take a few minutes to learn about someone who has Autism that they can greatly improve the lives who live with this crappy thing called Autism.
We need to be aware that more and more individuals are coming into the community with this disability. That these people have skills and abilities {perhaps very "tailored or narrow"} but we need to bring them into the patchwork of the community and the only way that will happen is by tolerance and accepting someone who may not be just like you.
I think the purpose of this post is two fold---1. to speak to those who deal with and live with Autism --who have had days like these and say -- its is part of the nasty, ugly, disgusting , son-of-a- bitch disorder and "this too shall pass"--- Its OK and we do not live in an Ozzie and Harriet world where everything and everybody is perfect-- so do not be ashamed and do not be afraid to talk about it--this is a learning process for all of us and we have to allow the community to learn from us.
2. for the community or public side of this is that our kids are not monsters, that they are not INTENT on hurting or defacing property --that this IS THE CONDITION OF THE DISABILITY. That their fear or shunning of individuals who have Autism is without merit and that if they would take a few minutes to learn about someone who has Autism that they can greatly improve the lives who live with this crappy thing called Autism.
We need to be aware that more and more individuals are coming into the community with this disability. That these people have skills and abilities {perhaps very "tailored or narrow"} but we need to bring them into the patchwork of the community and the only way that will happen is by tolerance and accepting someone who may not be just like you.
Monday, May 14, 2012
Thoughts about Mothers Day
I wanted to take a few moments to reflect on this day for those of us who add Autism to the mix-- I know that Autism is not exclusive to this "condition" but it is the factor that shades my views---
When Motherhood came upon me I really didn't have many set ideas about how it would be or what it would mean to me---I come from a very opinionated place on many things but motherhood was rather unexplored territory as I was an only child and really wasn't exposed to lots of "child-rearing experiences" Referring to the previous entry I guess I lived the "Mothers Lie" of just wanting a healthy baby-- ha ha The joke was really played on me!All of that being said I think each woman approaches Motherhood with great intentions, plenty of enthusiasm and a kinda fly by the eat of your pants attitude.
I don't any of us really ever think that we will be the ones who will get that "not so perfect" baby -- It always happens to someone else . Its something you read about in a book or newspaper or moreso online OR you hear about it from a friend or colleague. AND even more scary is the scenario that you start out with what appears to be a pretty "typical" child and find out months or years later that it is not the case---
I guess why I write this is sparked by one day that is celebrated by just about everyone Being that everyone even Jesus has a Mother! And Mothers Day is portrayed to be the day that Moms "take it easy" as the little ones prepare simple breakfasts in bed , Sign or make cards and treat their Mothers to a day of pampering ;all to show how much they love us.
BUT there are thousands of Moms who just don't have that kind of day-- That's not to complain or whine; that's not what this is about, its about recognizing those who don't get those accolades they so richly deserve and to bring awareness to the masses who don't realize that perhaps someone they know is not having the same glorious day that they had.
Many Moms today had just another day-- helping their child through that day bathing or feeding maybe even shaving-- Performing routine tasks to make sure their child has a kind of day that makes the child happy. That equates to Mothers happiness. Many will go with out a whisper of "I Love you Mommy" or "Happy Mothers Day" Because even tho she knows her child loves her he or she is not capable of expressing that sediment. Lots of Moms probably even had more challenging situations where behaviors reared their ugly heads. Believe me no one wants to go around any day with behaviors --AND on Mothers Day well its just the nature of the beast.
Guess what I am trying to say is to all the Moms out there Is Happy Mothers Day from someone who is walking your Moccasins down a similar path and although it did not come from your child I know your pain as well as your joy -- You have many things to be thankful for BUT you also have the right to mourn a little too!
When Motherhood came upon me I really didn't have many set ideas about how it would be or what it would mean to me---I come from a very opinionated place on many things but motherhood was rather unexplored territory as I was an only child and really wasn't exposed to lots of "child-rearing experiences" Referring to the previous entry I guess I lived the "Mothers Lie" of just wanting a healthy baby-- ha ha The joke was really played on me!All of that being said I think each woman approaches Motherhood with great intentions, plenty of enthusiasm and a kinda fly by the eat of your pants attitude.
I don't any of us really ever think that we will be the ones who will get that "not so perfect" baby -- It always happens to someone else . Its something you read about in a book or newspaper or moreso online OR you hear about it from a friend or colleague. AND even more scary is the scenario that you start out with what appears to be a pretty "typical" child and find out months or years later that it is not the case---
I guess why I write this is sparked by one day that is celebrated by just about everyone Being that everyone even Jesus has a Mother! And Mothers Day is portrayed to be the day that Moms "take it easy" as the little ones prepare simple breakfasts in bed , Sign or make cards and treat their Mothers to a day of pampering ;all to show how much they love us.
BUT there are thousands of Moms who just don't have that kind of day-- That's not to complain or whine; that's not what this is about, its about recognizing those who don't get those accolades they so richly deserve and to bring awareness to the masses who don't realize that perhaps someone they know is not having the same glorious day that they had.
Many Moms today had just another day-- helping their child through that day bathing or feeding maybe even shaving-- Performing routine tasks to make sure their child has a kind of day that makes the child happy. That equates to Mothers happiness. Many will go with out a whisper of "I Love you Mommy" or "Happy Mothers Day" Because even tho she knows her child loves her he or she is not capable of expressing that sediment. Lots of Moms probably even had more challenging situations where behaviors reared their ugly heads. Believe me no one wants to go around any day with behaviors --AND on Mothers Day well its just the nature of the beast.
Guess what I am trying to say is to all the Moms out there Is Happy Mothers Day from someone who is walking your Moccasins down a similar path and although it did not come from your child I know your pain as well as your joy -- You have many things to be thankful for BUT you also have the right to mourn a little too!
Someone elses WORDS about Mothers Day
I have my own perspective but found this on one of the "Autism Boards" andfelt that it was worthy of a "re-Post"
Happy Mother's Day: Mothers Lie
By Lori Borgman
Expectant mothers waiting for a newborn's arrival say they don't care
what sex the baby is. They just want to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps
right on schedule (according to the baby development chart on page 57,
column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons
by the billions.
She wants a kid that can smack the ball out of the park and do toe points
that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse, a missing chromosome or a palate that didn't
close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't
see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even
years later, took him in for a routine visit, or scheduled him for a
checkup, and crashed head first into a brick wall as you bore the brunt
of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?
There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will
be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to
a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you've
occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the
motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you. From where I sit, you're way ahead
of the pack.
You've developed the strength of the draft horse while holding onto the
delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my
sister-in-law.
You're a wonder.
Lori Borgman is a syndicated columnist and author of All Stressed
Up and No Place To Go, her latest humor book now available wherever books
are sold.
Happy Mother's Day: Mothers Lie
By Lori Borgman
Expectant mothers waiting for a newborn's arrival say they don't care
what sex the baby is. They just want to have ten fingers and ten toes.
Mothers lie.
Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps
right on schedule (according to the baby development chart on page 57,
column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons
by the billions.
She wants a kid that can smack the ball out of the park and do toe points
that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse, a missing chromosome or a palate that didn't
close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't
see the kick ball coming, and it knocked the wind right out of you.
Some of you left the hospital with a healthy bundle, then, months, even
years later, took him in for a routine visit, or scheduled him for a
checkup, and crashed head first into a brick wall as you bore the brunt
of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?
There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will
be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to
a hundred specialists yammering in your ear.
I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you've
occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the
motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."
You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you. From where I sit, you're way ahead
of the pack.
You've developed the strength of the draft horse while holding onto the
delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my
sister-in-law.
You're a wonder.
Lori Borgman is a syndicated columnist and author of All Stressed
Up and No Place To Go, her latest humor book now available wherever books
are sold.
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