This is for all the Mom's and Dad's too!!!

[Guest guest]

Tuesday, October 19, 2010

Getting

Moving Again!

As I work through Sam's new diagnosis in my head and in my

heart, it brings to the surface so many thoughts and feelings. I want to begin

this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.

Hello?

New teacher, or therapist, or

doctor?

Is that you?

Oh hello…I just wanted to

chat with you a second. To caution you. Or warn you.

Please, tread carefully. You

see, what you might not realize as you look at me, talk to me, tell me your

opinions, our options, our lack of options, and your predictions of our

outcomes is that; well… you see that heart?

The slightly broken, definitely

bruised one?

Yeah, that’s my heart. My

slightly-broken, definitely-bruised heart.

Now, I realize that as you look

at me you might see…a confident parent… or an angry parent…or

a happy-go-lucky parent…

You might think that I

understand everything… or nothing…… or that I have all the

experience in the world because I have done this before… or that I know

the rules… or that I don’t know the rules and that is for the

best….

You might believe… that I

am high maintenance… or overreacting… or maybe neurotic… or

disengaged and uninterested… or that I don’t really care… or maybe

I care too much…

But regardless of what you see,

what you think, or what you believe, this is what you should know:

I am broken-hearted. And it

doesn’t matter if it is the first day or a century later. It

doesn’t matter where in the “grief cycle” I might be. It

doesn’t matter if the wounds are healed, or healing, or fresh and new.

This heart is bruised. Slightly

broken. Different than it once was and will ever be again. And when you speak,

or don’t speak, in judgment or not, my heart is out there.

Some of “us”

parents… the ‘special’ ones… can be a pain in the ass.

I know that. WE know that. But we are fighting a fight we never planned to

fight, and it doesn’t end. We don’t get to clock out at the end of

the day. We don’t get a vacation from it. We live it, everyday. We are

fighting without knowing how to fight it, and we depend so much on you to help

us. We have been disappointed, by you or others like you. And we are

disappointed in ourselves. We are your harshest critics. We are our own harshest

critics too. We are genuinely fearful, and driven, and absolutely devoted. And

we also know, we need you. So please, be careful with us. Because as hard and

tough as we may look outwardly, our hearts are fragile things.

When I read Pia's post, it spoke volumes to me. Sam has been given so many

labels and in all honesty there are probably a few more we could tag on. His

medical history has not been an easy journey. But through it all....I am and

remain Sam's mom and I will never guess what God's plan is for Sam. I have

tried, but I have been proven wrong each time. My job here on earth with this

wonderful little boy is to love him unconditionally, believe in his abilities

and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how

I work with Sam, when I do things for him instead of allowing him to do them on

his own, when I buy into the labels he was given and allow them to determine

the things he will not do, when I don't take the time to figure out how best to

show, teach, and explain/work with Sam....I AM DISABLING HIM.

Do you hear what I'm saying...this is my internal battle with myself. So as

Sam's doctor, therapist or teacher...now you know where I am coming from. I

don't accept a minor hearing loss as okay, I don't accept teaching one form of

communication at the expense of another okay, I won't accept the statement,

" Sam will probably never be able to..... " fill in the blank. Because

if I do, if this is my belief...what chance...what hope does Sam have??? We will

reap what we sow. God tells us that.

Give our kids a chance to show you...to teach you as they are teaching us.

Don't ever give up on them, don't compromise and take the easy way out. What if

Einstein, Walt Disney, Helen Keller, Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/)

mothers would have given up on them...where would we and they be today? Before

you talk to me about limitations, modifications, medication...look in the

mirror...picture someone of authority, a professional saying this to you about

your own child, a child you love and believe in with all your heart...and then

come talk to me.

Sue Mayer

Mom to Sam (9) with Down

syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues and

Bi-Lateral Conductive Hearing Loss or as I like to say “Yada,

Yada,Yada”

www.suemayer-specialneedsmom.blogspot.com

[Guest guest]

Wonderfull post...It describes what I feel most fo the time and my heart breaks when I hear a therapist say, "we where doing this with him but we gave up" I literally heard this from a therapist that works at a "special boarding school", she was not talking about my son and I felt like punching her in the face...this is why I will do whatever it takes to never, for as long as I live and can manage, leave my son in someone elses care...this is why I don't like "special schools" they read the "label = diagnosis" and it seems like automatically a list of "this kid never will be able to" comes up.

Jannette--- Em qua, 20/10/10, Sue Mayer escreveu:

De: Sue Mayer Assunto: [DownSyndromeInfoExchange] This is for all the Mom's and Dad's too!!!Para: DownSyndromeWI , DownSyndromeInfoExchange , "'Providing hope for those who love someone with Down Syndrome (Down's syndrome)'" , homeschoolinganddownsyndrome Data: Quarta-feira, 20 de Outubro de 2010, 10:59

Tuesday, October 19, 2010

Getting Moving Again!

As I work through Sam's new diagnosis in my head and in my heart, it brings to the surface so many thoughts and feelings. I want to begin this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.Hello?New teacher, or therapist, or doctor? Is that you?Oh hello…I just wanted to chat with you a second. To caution you. Or warn you.Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?The slightly broken, definitely bruised

one?Yeah, that’s my heart. My slightly-broken, definitely-bruised heart. Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…But regardless of what you see, what you think, or what you believe, this is what you should know:I am broken-hearted. And it doesn’t matter if it is the first day

or a century later. It doesn’t matter where in the “grief cycle†I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there. Some of “us†parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and

driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.When I read Pia's post, it spoke volumes to me. Sam has been given so many labels and in all honesty there are probably a few more we could tag on. His medical history has not been an easy journey. But through it all....I am and remain Sam's mom and I will never guess what God's plan is for Sam. I have tried, but I have been proven wrong each time. My job here on earth with this wonderful little boy is to love him unconditionally, believe in his abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how I work with Sam, when I do things for him instead of allowing him to do them on his own, when I buy into the labels he was given and allow them to determine the things he will not do, when I don't take the time to figure out how

best to show, teach, and explain/work with Sam....I AM DISABLING HIM.Do you hear what I'm saying...this is my internal battle with myself. So as Sam's doctor, therapist or teacher...now you know where I am coming from. I don't accept a minor hearing loss as okay, I don't accept teaching one form of communication at the expense of another okay, I won't accept the statement, "Sam will probably never be able to....." fill in the blank. Because if I do, if this is my belief...what chance...what hope does Sam have??? We will reap what we sow. God tells us that.Give our kids a chance to show you...to teach you as they are teaching us. Don't ever give up on them, don't compromise and take the easy way out. What if Einstein, Walt Disney, Helen Keller, Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/) mothers would have given up on them...where would we

and they be today? Before you talk to me about limitations, modifications, medication...look in the mirror...picture someone of authority, a professional saying this to you about your own child, a child you love and believe in with all your heart...and then come talk to me.

Sue Mayer

Mom to Sam (9) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues and Bi-Lateral Conductive Hearing Loss or as I like to say “Yada, Yada,Yadaâ€

www.suemayer-specialneedsmom.blogspot.com

[Guest guest]

That is so beautiful

>

>

> Tuesday, October 19, 2010

>

>

> Getting

> <http://suemayer-specialneedsmom.blogspot.com/2010/10/getting-moving-again.h

> tml> Moving Again!

>

>

> As I work through Sam's new diagnosis in my head and in my heart, it brings

> to the surface so many thoughts and feelings. I want to begin this post with

> another post from fellow blogger Pia at http://www.thecrackandthelight.com/.

>

> Hello?

>

> New teacher, or therapist, or doctor?

>

> Is that you?

>

> Oh hello.I just wanted to chat with you a second. To caution you. Or warn

> you.

>

> Please, tread carefully. You see, what you might not realize as you look at

> me, talk to me, tell me your opinions, our options, our lack of options, and

> your predictions of our outcomes is that; well. you see that heart?

>

> The slightly broken, definitely bruised one?

>

> Yeah, that's my heart. My slightly-broken, definitely-bruised heart.

>

> Now, I realize that as you look at me you might see.a confident parent. or

> an angry parent.or a happy-go-lucky parent.

>

> You might think that I understand everything. or nothing.. or that I have

> all the experience in the world because I have done this before. or that I

> know the rules. or that I don't know the rules and that is for the best..

>

> You might believe. that I am high maintenance. or overreacting. or maybe

> neurotic. or disengaged and uninterested. or that I don't really care. or

> maybe I care too much.

>

> But regardless of what you see, what you think, or what you believe, this is

> what you should know:

>

> I am broken-hearted. And it doesn't matter if it is the first day or a

> century later. It doesn't matter where in the " grief cycle " I might be. It

> doesn't matter if the wounds are healed, or healing, or fresh and new.

>

> This heart is bruised. Slightly broken. Different than it once was and will

> ever be again. And when you speak, or don't speak, in judgment or not, my

> heart is out there.

>

> Some of " us " parents. the 'special' ones. can be a pain in the ass. I know

> that. WE know that. But we are fighting a fight we never planned to fight,

> and it doesn't end. We don't get to clock out at the end of the day. We

> don't get a vacation from it. We live it, everyday. We are fighting without

> knowing how to fight it, and we depend so much on you to help us. We have

> been disappointed, by you or others like you. And we are disappointed in

> ourselves. We are your harshest critics. We are our own harshest critics

> too. We are genuinely fearful, and driven, and absolutely devoted. And we

> also know, we need you. So please, be careful with us. Because as hard and

> tough as we may look outwardly, our hearts are fragile things.

>

> When I read Pia's post, it spoke volumes to me. Sam has been given so many

> labels and in all honesty there are probably a few more we could tag on. His

> medical history has not been an easy journey. But through it all....I am and

> remain Sam's mom and I will never guess what God's plan is for Sam. I have

> tried, but I have been proven wrong each time. My job here on earth with

> this wonderful little boy is to love him unconditionally, believe in his

> abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what

> I do or how I work with Sam, when I do things for him instead of allowing

> him to do them on his own, when I buy into the labels he was given and allow

> them to determine the things he will not do, when I don't take the time to

> figure out how best to show, teach, and explain/work with Sam....I AM

> DISABLING HIM.

>

> Do you hear what I'm saying...this is my internal battle with myself. So as

> Sam's doctor, therapist or teacher...now you know where I am coming from. I

> don't accept a minor hearing loss as okay, I don't accept teaching one form

> of communication at the expense of another okay, I won't accept the

> statement, " Sam will probably never be able to..... " fill in the blank.

> Because if I do, if this is my belief...what chance...what hope does Sam

> have??? We will reap what we sow. God tells us that.

>

> Give our kids a chance to show you...to teach you as they are teaching us.

> Don't ever give up on them, don't compromise and take the easy way out. What

> if Einstein, Walt Disney, Helen Keller, Schwab, Nick Vujicic

> (http://www.attitudeisaltitude.com/) mothers would have given up on

> them...where would we and they be today? Before you talk to me about

> limitations, modifications, medication...look in the mirror...picture

> someone of authority, a professional saying this to you about your own

> child, a child you love and believe in with all your heart...and then come

> talk to me.

>

>

>

>

>

> Sue Mayer

>

> Mom to Sam (9) with Down syndrome, Brain Injury, Apraxia, Dysphagia,

> Respiratory/Immune Issues and Bi-Lateral Conductive Hearing Loss or as I

> like to say " Yada, Yada,Yada "

>

> <http://www.suemayer-specialneedsmom.blogspot.com>

> www.suemayer-specialneedsmom.blogspot.com

>