Monday, September 13, 2010

Fed- Up!

Daniel should have been in school today, starting his second week of school.  He is not, and that makes me sad AND angry.  It makes me sad because my child isn't being allowed to participate in school with other child his age, he isn't being allowed the education that he is entitled to.  He is being thrown around all because of money and because people don't care.  It makes me so angry because they want to put him into a program that does NOT fit him, because they are worried about money, because they are doing a poor job and just want to push him out of the way.  It makes me angry that people don't look at him as an innocent child that did not ask to be born with a disability, but got dealt a crappy hand from the get go.
He is intelligent, he is not "unteachable" just because he is in a wheelchair.  The wheelchair just means that currently his legs aren't strong enough to support him for long periods of time.  The wheelchair is just that a place for him to sit that will give him support, it does not mean that his brain does not comprehend.  HE UNDERSTANDS WHAT HE IS DOING AND WHAT PEOPLE SAY.   So when you look at him with pity in your eyes and you say "Oh that poor child", he understands-- So stop it please.  YOU are making him feel like he is different.

Because he cannot speak does not mean he can't understand that you are underestimating him because of his disabilities.  He understands, he reacts, and he has a heart.  STOP underestimating him.  He can do and understand and learn everything that your child can, he just can't verbalize his answers, but if you give him another alternative way to answer he will.  In fact he probably knows more than most 5 year olds do.


If you open your eyes and listen with your heart, you will hear the most wonderful things from my child.
IF you would just take a moment to "see" my child as a person instead of a label that you have applied to him.  He has so much to teach you, AND from what I am seeing, you have a lot to learn.
Take the time and learn from him, and you can become a better person.  I promise you that.

After the last week I've had I thought I'd let you read something I was sent from Daniel's SLP who has the biggest heart and totally understands what parents go through.

An Open Letter to Special Needs Professionals


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.

 In the last two weeks, my heart has been broken because of words that people say, because of lies I have been told in regards to Daniel and his school.  I don't know everything, and I don't claim to.  I do not look at my child through rose colored glasses.  
I know that there are issues with him physically, but you will have a difficult time telling me my child can't learn, that my child is not cognitively there.  I know there are issues, believe me we live and breathe those issues.  But one thing I know for certain - He is a little 5 year old boy, who wants the same things any 5 year old wants.  He just wants to be loved and accepted.  It brings to me tears that people judge him.  That people don't talk TO him, that they talk ABOUT him like he isn't a person. He has a heart and he feels happy and sad, and hurt just like anyone else.
My eyes have been opened and I have had a rude awakening that people I thought I could trust were trying to give the best for my child weren't.  I am sad today, and will be for a while.  But note this, I might be down today, but I am not giving up and I will fight for what I think is right.  I might not have the knowledge right now, but I will get it, and I will pull in resources and I will do what I need to do for my child.


Anonymous said...

Sigh. I've been wondering how things have been going for you guys. I am so sad to read about the way people have been treating Daniel. All I could think of was indeed how smart and amazing he is from the posts you have written. And sad that others are not able to open their hearts and see the same. Sending strength and energy as you continue on with the fight. And wishing there didn't have to be a fight at all.

blogzilly said...

I don't know all the specifics of your situation cause I am not there, but I don't need to to say this...never stop fighting. Give it everything you have and then reach deep down within yourself and find a bit more and keep pushing and pushing and pushing and pushing. You are the champion for your son and no one else.

Hang in there, and let any of us who follow you on these pages know is there is anything we can do to help you.

Pia said...

I am so so so very sorry they are being *sshats. We are having our own problems, but nothing like that. I am always amazed at a system that puts parents v. professionals... it is the opposite of the way it should be.
Is there any wonder relationships are so fricken strained?

I hope it is quickly resolved, and Daniel is the winner. Because he should be...

(btw, thanks for the repost... I am honored and flattered :)

Katy said...

Daniel is not just "teachable"--he is advanced. Fight, fight, fight, Melanie. We are some of the first people to ever fight for this type of thing so it will be hard. Hopefully it will be easier for those who come behind us.

Wherever HE Leads We'll Go said...

So sorry to hear that you are going through this kind of stuff with Daniel! He is amazing! He is bright! He is funny! He is adorable! He has a smile that could melt anyone's heart! He has a strong, determined, fierce mom! I know that you will keep on fighting and not give up - it is just unfortnate that you are presented with a "battle" like this. By the way, that letter was beautiful!

Anonymous said...

I love that letter you posted.

This makes me so angry. UGH, I am so sick of districts putting our children at the end of the line, like they are not important. THEY ARE. IF YOU DON'T HAVE THE FUNDS, FIND IT. It is their LEGAL obligation.

My son is cognitively delayed and I still expect him to learn! And I expect the school to teach him! If one way doesn't work, then they need to do the research and try something else.

I am so tired of us having to fight for rights that we're suppose to already have. it's ridiculous

Kathryn said...

it truly sucks how much you / we have to fight for things that are consider inalienable rights . But fight we must, and educate, inform, direct, lead, guide and on and on. You do a very good job of it all.

Don't let them grind you down!

Daniel deserves far better than what he is getting from the school.

Karen said...

Well said. It's a sad testament to our school systems (who proclaim Equality! Acceptance!) that they don't really want these kids. It almost feels like the desegregation all over again.