Showing posts with label advocate. Show all posts
Showing posts with label advocate. Show all posts

Tuesday, December 17, 2013

Some sense of normalcy...






Today's post comes directly after a visit to my local grocery store for a gallon of milk....


You know you are overly emotional when: 


You are standing in the produce aisle and you spy across the way, standing at the deli counter, a man and his girlfriend. From far off, you can tell from behind, that the girlfriend has Down syndrome. He was hugging her around the waist and bossing her around. Ha! The man, having some sort of disability of his own, was also giving the deli guy a hard time - laughing and joking that he was slicing meat to slow and he was gonna tell his boss, etc etc. You are frozen watching this everyday 'normal' life style for them. 

You look like a stalker so you pretend to look at the lettuce.

You gather that the man works at this store and he is there shopping and joking around with the deli guy who appears to be his friend and coworker. His girlfriend pats the man on the butt and you giggle slightly embarrassed that you are still staring. 

You pick up a tomato to still not look like a stalker. 

You see the deli manager come over and the mans girlfriend runs full steam ahead to the manager and embraces her, with what may seem like the biggest hug this side of the planet. 

You feel your eyes well up. 

You hear the man say, 'Hey that's my lady there, easy!' 

The tears get worse and I know I have to move on to another aisle or I may just have picked up every piece of produce in the store. I couldn't help but look back one more time as I wiped a tear away from my eye. A very happy tear.

This is what I wish for my son. Normalcy. 

Two grown adults - shopping, caressing, joking with coworkers.
Yes. That is what I want him to have.
And I will do ALL in my power to make sure he succeeds in this. Because everyone deserves, love, friendship and a sense of pride.

And on a side note, we will now be having salad with our dinner.




Tuesday, May 21, 2013

I Run For...


Recently in one of my many Down syndrome groups someone posted a listing.
It intrigued me...

It said...


Hello everyone, I'm Tim Boyle, Founder and Executive Director of a group called "I Run For..." We pair up runners and other athletes with children and adults with special needs and they do all of their workouts, exercising, and runs in their honor. Right now we have several runners on the waiting list hoping to be paired with someone special. If you are interested please check out the fb page. If you are interested in having your special someone paired up send me a message or comment on this post. Here is the link to the page...
www.facebook.com/groups/irunformichael


I thought, "What a great idea!"

So I joined the page and added Dakota's name to the list. We were paired up with a runner that very night.
I have to say, I had no idea what it was even about, but the thought of someone running for Dakota made my heart smile. Dakota is not a great runner, heck he doesnt even really run at all, he kind of does this weird skipping hopping thing. I know he will someday. And he is still fast, but someone who can run, like really run - run... Like marathons and not casual runs across the block runs was an awesome thought.

Our runner posts his runs and workouts in the group and tags us in them to motivate us to keep trying, and we in turn post things for him, to keep him motivated.

Awesome concept!

I just thought I would share. And if you know anyone who would like to sign up as a runner or as a person who is ran for, then the link is above.




Many blessings!!


Thursday, May 2, 2013

Crying on the Inside...



You know when you are scrolling through your facebook, and you are checking out everything from what people are eating for breakfast to what they think of the government? Well in between those posts was a shared blog post. And I decided to read it...

http://lilasmiraclelife.blogspot.com/2013/05/today-i-cried.html

And it made me cry.

It made me cry because I feel her emotion. I know EXACTLY what she is talking about, exactly how she feels.

I have been on this earth fighting for Dakota for almost 8 years! Battling with ignorance.

Here was my facebook post when I shared:

Oh man! This is tear jerking - comes from that place within myself that I could never utter out loud. Yes I appear strong on the outside, but I am a crying mother on the inside. The ignorance we are teaching our children HAS TO STOP! Come on people - you want us to accept gays, you want us to accept black and white marriages, you want us to accept women voting, you want us to accept a black president - well we have... Why cant we accept these beautiful children - WHO HAVE DONE NOTHING WRONG! Who just sit there and love you! Who just want you to say hi to them when they say hi to you! Who just want to randomly pick you out of a crowd and want a hug? Why? Why is that so damn hard for some people? I just dont get it! And I dont think I EVER will. It just makes no sense. They are not a joke. They are human beings. They have feelings! They dont want you to laugh at them, or make a funny meme on facebook. They just want to be accepted. Are you one of those people? Its not too late to get educated. Let me HELP you! Let DAKOTA help you! I guarantee you will be a changed person after you meet him, or any other child with a disability... 
Steps down off her soap box...
Bows...
Thank you...
Dakota thanks you...

When will it end? It has to end with us parents. Our children learn from us. WE NEED to teach them that different is okay. We cant leave it to them to figure out. We have to... teach... them...

A lot of people think its up to us special needs parents to educate. But its not. Dont you think we deal with enough? Do you even realize how much we go through in a single day? Its NOT OUR JOB to teach your children how to love. Its yours.

Now dont get me wrong, I love educating people on the topic of Down syndrome. I love shouting it from the roof tops. But I get tired too. I get sad. I get depressed. But I get back up and keep teaching my children that its okay and people are going to stare and laugh. But I shouldnt have to teach my children that.

It just breaks my heart that we are living in 2013, and everyone is fighting for rights and achieving it. And then there is our kids. Still being treated like crap. Because they are being raised to think its ok.  Its not. And you need to know that.


Ok well I really dont know how to end this post, Ha!

So I am just going to say...

Please be the one to stop the ignorance TODAY! Make a simple change. Help me change the world.

Love and Blessings,



Thursday, March 21, 2013

WDSD



Today celebrates World Down Syndrome Day! March 21st - 3/21...
We celebrate on this day because Down syndrome is also known as Trisomy 21 - or 3 copies of the 21st chromosome.
3:21

We hope somehow someway you create awareness today for us, for those with Down syndrome and for those who love someone with Down syndrome. We hope that we have made a positive impact in your life. We hope that we made a difference in just one person.

Spread the word! Down syndrome is AWESOME!!





Friday, November 30, 2012

Homeschooling!

I have decided to homeschool Dakota. There were recent events which led m to this decision, which I will go into detail about another day. Right now investigation is pending on his school so I will not disclose details.

We had the option to put back in public school ( not going to happen) or into another private school ( because that worked oh so well) or homeschool.  I decided after MUCH thought that I would try. I mean I know it will be hard and I know that he and I will get frustrated. But who is better fit to teach him and love him then .... well, ME!

So we transformed our living room into half homeschool room half living room.... photos pending, its a work in progress!

This is a new exciting journey for us! I am nervous, but I know I can do it!! Dakota and Eli love the new set up! They have already colored and painted and done puzzles at their table! I am happy they accepted t so easily!!

Look forward to more posts on how the heck this is working for us!!



Wednesday, July 18, 2012

Blog Hop - Growing up...







For parents of children with disabilities: How have earlier interactions with individuals with Down syndrome – or other disabilities -  influence (d)  how you felt and feel about your child’s diagnosis?



Hmmm, growing up, I never knew anyone with Down syndrome. The only experience I ever had with it was watching "Life Goes On" faithfully! I LOVED that show. And when I was little I didnt even realize Corky had a disability!  To me it was a regular ol family, just trying to get by!

I did however grow up around disabilities and differences. 

See, I moved to Florida so my mom could come help out my aunt. My cousin was born with a little leg. She was going through some crazy surgeries and they needed us. My cousin never outwardly let it get her down. She was one of three daughters, and was the middle child. She was always, happy , energetic and upbeat. Even with all the stares and whispers, she just went on her merry way. Which taught me to do the same. I never looked at her as different. I never really noticed the casts, or scars, or lift attached to her shoe. We were just kids, we made up our own stuff - the shoes, yeah they were spice girl shoes! And I so desperately wanted to try it on!! 

Growing up with someone "different" molded me into the mom I am today. It has softened the blows of the stares and whispers. It made life seem not so scary.  

After high school, I volunteered with a hospital group of quadriplegics. The most amazing group of men, I had ever met! Some had been paralyzed since birth, some from accidents. They made me smile and love in ways unimaginable! I never saw them as their wheelchairs. Never. I saw them as a group of guys, who liked to have a great time!

My best friend growing up had a brother with cerebral palsy. He was such an awesome kid! And he was utterly in love with me. He was my little buddy. I admit, this one was a bit harder to swallow then most, as I couldnt understand what he said clearly all the time. But I adapted. And I still give him huge hugs when I see him! I watched him grow from a little boy to a grown man! And my life was changed because of it!

So when I got pregnant the second time, and I failed the AFP and they told me there was a chance of Down Syndrome. It didnt phase me. When my son was born, and our eyes met. There were no tears of sadness.  There was utter joy.

Because my God prepared me for him. My God had my life planned before he was born. My God eased my mind. I wasnt scared. I was happy. I wasnt worried, I was in love.

My sons diagnosis doesnt own him. He is not Down syndrome. He just happens to have an extra chromosome. And an extra dose of special.

I was ready.




Wednesday, May 30, 2012

Blog Hop - Tell me more about your connection with disability



My connection with a disability, you ask?


I have three kids - those of you who know me, know how amazing they are. Those of you who don't, well, you are missing out!!

Skylar - Age 12 ( Oh MY gosh! I can not believe she is 12!!) ASPERGER SYNDROME


When Skylar was a baby, her father and I always knew something was "off". She always had these odd tendencies and strange way of dealing with things. We called them "quirks". After she got kicked out of her 3rd Preschool, I took action. I knew something was going on. I just didn't know what. I was 22 and a first time mom. My daughter was supposed to be perfect! We brought her to a few doctors who kept telling us it was ADHD. But I refused to think that was all that it was. I knew there had to be more. Her father and I separated and I still went to more doctors. They then blamed it on our separation. I was less then thrilled. More and more docs, more and more opinions, which all boiled down to ADHD. They tried to shove meds at me and I said no. Fast forward to age 7. First Grade. HUGE issues in school. Getting referrals and more. I jumped back on track and went to more doctors. I finally was sent to a developmental pediatrician. Where FINALLY, I got some answers. 2 years pass by... more testing, more paperwork. 

Here came the term, Asperger Syndrome.  What in the world is that?? 

More testing and finally a diagnosis. Asperger Syndrome with Semi Pragmatic Disorder, with a dose of ADHD for good measure.  So what does this mean? It means, my daughter is super smart, but socially lacking. She doesn't have a third eye, she doesn't go around beating other kids up, she doesn't even have bad grades. She does, however, have an inability to look people in the eye, the inability to have appropriate conversation and often talks about nothing pertaining to the topic at hand. She is an amazing artist and knows more about cats then the zoo! She is currently medicated, but only for the ADHD aspect of her disability. And it is such a low dose, that it is really only to help her pay attention better...

She is amazing, and I wouldn't have her any other way.


Dakota - Age 6 DOWN SYNDROME


When Dakota was in utero, I took the AFP test. This test gives you a ratio on your chances of having a child with Down Syndrome. Now, so you know, this test is optional. I only took it because it was paid for and why not? When my results came back as "failing", I still wasn't really concerned. Because they have to put the mark somewhere, results under 1:300 are considered failing. That's one in 300 chances of having a child with down syndrome.My results were 1:174, that's one in 174 chances of having a child with down syndrome. Less then one percent. I was given the abort question, which was never a thought or option. And we continued our pregnancy as usual. They did an ultrasound to check his heart and it was perfect. He measured perfect, nothing was abnormal. 
August 14th, 2005, Dakota came flying into the world. As he was being lifted out of me I saw it. The eyes of an angel. I knew. The first words out of my mouth, as if in slow motion..."He has Down Syndrome!" 
Suddenly everything was fast forwarding, tears, crying, shouting, consoling. As I sat there watching everyone buzz around me. 
6 years later, we are still learning, everyday. He never ceases to amaze us with what he can do! He may be a little slow at things, but he can do it! He is talking more and more. He can run, jump and dance. Oh boy, can he dance!! 

Eli - Age 1 


Eli doesn't have a disability, that we are aware of. But I cant mention two kids and not the third. I will say for Eli, that he is as spoiled as they come. He cries, a lot. Over stupid stuff. Ha Ha! But we adore him just the same. And its amazing to see his brother and sister interact with him. Skylar loves babying him and Dakota loves hugging him. Hmm, wonder where the spoiling comes from :) He is an amazing addition to our family and makes us complete.

I am thankful for all the friends I have made along the way of our journey, which is just beginning! It seems every day we meet more and more friends!

I am also thankful for the friends we lost along the way. They have made us stronger and more aware that we need to spread awareness across the world for these disabilities! 

For now, we are just gonna keep on, keeping on...




This is my first Blog Hop with thanks to With A Little Moxie! I hope you enjoyed it!


Saturday, April 7, 2012

ThisAbility

Melanie's Mania is proud to support ThisAbility....


Here is a little bit about them!


Company Overview
A Non-Profit Organization for ALL Special Needs parents and kids. Providing Support, Resources and Information.
Description
This Organization will provide Support, Resources and Information for new, expectant moms and families with kids of any age. We will also connect these families with other families who have similar disabilties. We will provide information on their child's medical condition, HIPP, Medicaid waivers and more. They will receive support and a listening ear from other parents that have children with disabilties. We will provide parent packets full of resources and community outreaches, etc.
Please message Tara Triggs-Sample if you would like to contribute, volunteer,be a part of our organization or connect with other parents or need support.
General Information
WHAT WE ARE SEEKING NOW:
***Parents who are willing to be connected with other parents of children with the same or similar conditions.
***Pamphlets/Fliers and Resources from Companies, Organizations, Outreach's, Church's and businesses that would be provided to these families.
***People who want to volunteer with the Organization
***Donations for Parent packets, which can be financial, Folders, items to put in packets, new baby/kid items, things for moms, etc





Saturday, April 17, 2010

The trials of Having a Special Needs Child

So I am going to entitle this blog The trials of having a special needs child. I have already spoken to most of my dear friends on what is going on, and I wasn't going to blog about it, but in the off chance someone needs help with what I have been dealing with, I thought I would put it out there... So here goes...

As read in my previous blog, Dakota has been suffering with toxic synovitis. I decided to send him back to school on Wednesday, after a week and a day of rest. I felt he was able to resume normal activities enough to go to school. And since I would be volunteering at the church that day, I knew if something went wrong, I would only be 5 minutes away. So I drop him off and start explaining to the teacher, whom we shall refer to as Ms. D. and his Asst Teacher whom we shall call Mrs A. As I begin my story to them, Ms. D, rudely shouted to Mrs A to get the kids to the table and feed them breakfast, and she will listen to my story. This rudeness actually rendered me speechless. So i took a second to collect myself and resumed my story, pivoting both to Ms. D and to Mrs A. I personally felt that both teachers should hear what has happened so they both know how best to deal with my child's injury. I specifically told them, he is okay to resume normal activities, but wanted them to keep an eye out for a specific child who pushes others down. I didn't want Dakota pushed down onto his hurt leg. Mrs A even went as far as to ask me if he could go onto the playground and I said yes. So, I left feeling confident that they heard and understood me. So I got in the car and headed to Walmart to grab a soda before headed to church. I called LJ to tell him how rude Ms D was to Mrs A, and how I was slightly offended they did that in front of me. No sooner did I hang up with LJ the school nurse calls and my heart fell to my feet. I thought immediately something happened to Dakota. But I was so very wrong. The nurse says she just got a call from the teacher stating that Dakota couldn't be moved, touched or held, and she was gonna need a doctors note to allow Dakota back in school. Say WHAAAAAT?!?! I never said that! So she said there must be some form of miscommunication. At this point I was angry, I was angry from them fighting in front of me and angry that she didn't hear a word I said. So I asked to be patched over to the principal. I left a voicemail addressing my concerns.
Fast forward to the end of the day. I still ha vent heard from he principal so I marched up to the office and demanded to speak to her. She wasn't available but I go the Asst Principal, which was fine by me. SO i told her everything that had happened this morning. I felt confident that my voice was heard. Onward to pick up Dakota. He was laying in his cot, like everyone else. So I grabbed him and went to go get his backpack from his cubby outside the door. Mrs. A, the assistant followed me. SO i asked her how his day was .... drum roll please... "Oh he did good, HE WAS STRAPPED TO HIS CHAIR ALL DAY" Ohhhhh MYYYYY GOOOOSSSHHHHH. I about fell on the floor. I repeated, " strapped in his chair??" Yep, she said. She said she tried to move him and Ms.D said be careful how you move him, if you break his leg it will be my fault. As I removed the knife that she had just stabbed in my chest, my face started getting redder and redder, I was sooooooo MAD. So i grabbed Dakota and ran to the car to call the Principal back, I left a very very nasty message.
Fast forward to the next morning.I decided to confront the teacher about what happened yesterday and give her the benefit of the doubt. I calmly asked her int he classroom if I can speak with her and she said yes. So I asked her where the miscommunication occurred yesterday. And she said what do I mean. And I said Well I am pretty sure I was clear when I said Dakota could resume normal activities. And then I get a call from the nurse saying he cant be touched moved or held. And she said oh I never said that, THEN she started walking into the hallway, to get the therapist to back her up. The hallway where my already loud voice is amplified, mind you. So she said to the therapist, I never said that right??? The therapist had no idea what was going on and looked like a deer in headlights. So then I asked her, was my son strapped ot a chair all day. And her reply... Who told you that... hmmm she never said NO. I said a few people told me that... She said well who, and I said I'm not going to tell you. So she started panicking. She said her 'supervisor' told her Dakota needed rest. I told her Dakota had a week of rest, I TOLD you he could resume normal activities. And she kept saying her supervisor this, her supervisor that. So I knew a this point it was going no where. I ended it and started to leave... then I heard click click click, I look behind me and the therapist is chasing me down the hall in her heals. She asked if she could speak with me, I said absolutely. She said that in fact, Ms D DID tell her Dakota could not receive therapy due to the fact that he could not be moved held or touched. Now I ask you, Moms out there, if your child could not be moved held or touched, would you send them to school?? I mean do I have idiot written on my forehead?? seriously?? So again I placed another call to the principal.
Fast forward to picking him up that day. As I enter the kindergarten pod, one of the other teachers stops me and says, they moved Mrs A. NOW i WAS REALLY MAD. That was Dakotas favorite teacher of all, he only went potty for her, and he only took naps with her. Now he is in a class room with Liar Liar Pants on fire and some lady he doesn't even know taking Mrs A's place. So that teacher says, don't tell anyone I told you.. and I said no problem. But really I am thinking, "Am I on a hidden TV show?" "Is this really happening??" So I go to pick up Dakota and sure enough no one I know in there except for Ms D. I grabbed Dakota and left. Again calling the principal. I called my mom on the way home soo very upset. And she said enough is enough, call the the superintendent. This was also the advice of my aunt, who had to deal with similar issues when her kids were growing up. So i did. I called Julie Jannessens office the second I got home. She said she would get to the bottom of it.
Fast forward to 8:30PM. I finally get a call from the principal. Her question?? "whats going on?" Oh yeah, I let her have it, I spilled every detail. She said she was aware of the rudeness going on in the classroom, which is why She move Mrs A. She said she was having someone from the state come down and observe the class on Friday. And she said she would be popping in there more often. She also said she was there the day Dakota was strapped in all day, and she said the three times she went in he was not strapped.. I am still not convinced.
Fast forward to the next morning, Friday. I walked in and Dropped off Dakota. Ms D, finally introduced me to her help. ~ Hi nice to meet you, in my so not enthused tone.~ Gave Kota a ton of kisses and left. Fast forward to picking him up. The state worker was there, she came up and introduced herself and mentioned that I had concerns for the class, and that she would like to call me. PERFECT, someone who wants to listen to me! So she is supposed to call me this weekend. Then Dakota comes up to me and sticks out his tongue. For those who know him, he does this when there is something in his mouth, or teeth or on his tongue. So I look in there, to see.. normally its dirt or a hair or a toy. I see blue in his teeth. My first thought is that they had blue cookies or cupcakes or something and its stuck in his teeth. My hear fell when I looked over and everyone was playing with play dough. So i asked, did Dakota eat some play dough. Immediately Ms D said no, he wasn't even near the play dough table. SO i look again, I again said He has blue play dough in his teeth. So Ms D counteracts with ohhhh, he tried to get it, but I got it in time... SO i laugh and say AGAIN... you were unsuccessful HE HAS PLAY DOUGH IN HIS TEETH. SO the new asst says ( to try and lighten the mood) I don't know about you Dakota,, but I prefer red play dough. OY. Get me outta here.

So as it stands right now, I am awaiting a call from the state worker. And I have to keep an extra close eye on my son. he cant tell me what is going on, so I have to be Sherlock Holmes and try to get clues. What kind of life is this??

Motto for this story: Parents, be your child's advocate. if you don't, then who will. Don't be afraid to speak up. The squeaky wheel, will eventually get the grease.