My amazing daughter…. The Advocate

Gabby (who is 9) JUST LOVES her brother. LOVES.

She thinks he is the greatest thing right after McDonald’s french fries.

Yesterday she came home really excited to share something with me and I am having mixed feelings about it.

She stated that she and her friend have started the R-word Police in their classroom. (I believe her teacher ok’d it since she mentioned her teacher in there).

Whenever anyone says the word, they will report it to the teacher.

I think it is so touching that my daughter wants to do this, as well as her friend. She said her friend also has a very special person in her life, her aunt who is in her twenties and needs help with being fed and clothed and bathed (MS... MD... CP..?.. I am not sure).

It makes me very proud that she is my daughter. And the fact that these two little girls “get it” I love it. I LOVE IT. I know people first hand that could care less and they are as “young” as me, younger and older as well and they could care less.

These girls are destined to greatness, I believe.

But it scares me.

It makes me a little leery and the mamma bear in me comes out. I am scared that Gabby will be teased for standing up for what is right... For standing up for her brother and all those other people that are differently-abled. I think I will die if she comes home crying telling me that the kids called her or HER BROTHER the Rword. I – WILL – DIE.

AND I AM PRAYING FOR THE STRENGHT NOW BECAUSE I KNOW THE DAY WILL COME. Maybe not this school year, but kids only get nastier as they approach middle school.

Part of me wants to tell her that maybe she shouldn’t, but I don’t want to discourage her.

I admire her for having the self esteem, the desire, the will to do this.

And I know Gabby is so sincere about the whole Ds thing and she is amazingly accepting of it. Ds doesn’t scare her and she just wants what we all want for individuals with ds, ACCEPTANCE and RESPECT. She is one brave little girl (she gets it from me -wink wink).

So what do I say to the little girl with the great big heart?

Dear God, please take care of my little girl Gabby, bless her and give her the strength and the courage to overcome the challenges she will face in her journey as she helps care for your little angel Ethan.

-Amen.

Erika

The BRAT is Back

Ethan is apparently feeling a whole lot better... and BACK to doing what he knows best -being a little monster!
... in his 18 months of life, he has never EVER taken a pacifier... until today.

I love you little man! So happy to see you smiling again! 

Ear Infection, Ds Research & Potty training, oh my

I am sure you have all panicked at the lack of posts recently! 

Well, we have been combating an ear infection, congestion and the monster of them all, TEETHING! FIVE, yes, FIVE little piranha teeth coming in all at one time. I would say they are the culprit of the ear infection. 

I have been running on … I don’t know what because I don’t think there is anything of anything left in me. Sleepless nights, doctors appointments, then there is the other kids and the husband to care for! Yes, I have been a mess and I have the hair to prove it. 

But I am mother, and you moms know how it is, we have some sort of human powers at times and we make it all happen, and at the end of the night, sometimes, there might be a smile…sometimes. 

And just when we thought everything was getting better, Ethan develops a rash. Looks like he had an allergic reaction to the antibiotic, and there we go again, back to the doctor. 

Today, there was no rash, and Ethan was back to smiling and back to brat-ness… I anticipate better days to come!

In the mist of all of this I still managed to get a lot of other stuff accomplished. We attended a Research Ds  presentation and a  Potty Training class. Great stuff.

1^st, let me just state the obvious; Down syndrome research is highly underfunded. Most donations for cognitive and memory research comes from private donations. We are still long ways from getting a med FDA approved and out in the market. They anticipate another 10 years before something is available, and there is something available. But due to lack of funds and just the process it has to go through, it’s going to be a while. For more information visit www.researchDS.org

And lastly potty training. (We are not here yet, and I am in no way an expert =), we will however be starting the sitting on the potty very soon.)

Here are few tips:

 With a child with Ds DON’T wait for when THEY are ready, cause guess what, they will never be ready if you leave it up to them. Regardless of what people think of our kids, our kids are BRILLIANT and they find ways out of things, and they will manipulate you,… oh, they will! Ethan has us wrapped around his tiny pudgy finger, and HE KNOWS IT.

Start sitting your child on the potty as soon as they can sit up. Get them used to the feeling of sitting on the potty. Make it a routine, ex. after breakfast, after lunch and after dinner. Just sit them there for a minute or so.

Don’t make it fun! Don’t bring in toys and books into the restroom. Don’t give the child a reason to become distracted. 

When you are actively potty training your child, stick to the underwear! Don’t confuse the child with one day a diaper, the next day with underwear. Be consistent. Plus the underwear gives them the sensation of being wet. Pick a long weekend when there is absolutely nothing else to do. I have seen where people have taken a whole week off from work, others a long holiday weekend. 

If they wet themselves, let the urine run down their legs, then do the run to the potty exercise 6 times in a row. (Run to the potty, pull their underwear down, sit on the potty, get back up run back,… do this 6 times in a row) The concept is, the child should hate to do this so much, they will not want to wet themselves anymore.

And reward them with more drinks! Whatever their favorite drink is, we are trying to fill up their little bladders. Potty training is the only exception where a child can be rewarded with a treat. Keep a treat such as M&M’s or Goldfish, but only use that treat for potty training… “potty treat”. 

If your child is finally able to use the potty, but needs to be reminded of using the potty, alarms and timers work wonders. Set a timer as a reminder that the child needs to go use the potty. Timer goes off, the child goes to the potty. Have the child wear a watch with a timer. 

The sooner we can successfully potty train our children, the better of a chance they have to be able to go to school and be in a fully included kindergarten.

Eyes Wide Open

Prior to Ethan, I was a kind person. I was caring and understanding. (So I thought) I don’t ever remember making fun of individuals with disabilities, intentionally. 

I do however, remember in my way younger years impersonating people with a disability, I do remember making jokes…I also remember saying the R word ( A LOT) and referring  to people, objects, myself as the R word. I never thought twice. NEVER. Never did it occur to me the relationship between the R word and those with actual disabilities. Though I do know I used the word to insult, because somehow subconsciously I knew being one of those people with a disability would be a negative thing.

NOW, as a mother of a child with Down syndrome my eyes have been widely opened. As most of you, I am disgusted with myself for who I was then. I am sure that most of us can look back and shake our heads at who we were then. 

I am also disgusted by how society makes it ok to make fun of those individuals such as my son. Nowhere along my life journey did anyone stop me and say “Erika, your language is disrespectful”, “Erika, making fun of those with special needs is inappropriate.” Nope. No one.

Not the school system, not my parents, not my role models, not the media, not one book I ever opened up. NO ONE. Instead, everyone laughed and came up with more jokes. Instead more TV shows aired with the R word being used every 5 seconds. 

I have become confused in it all. They try to teach respect at school. Parents tell their kids “treat others the way you want to be treated...” but it seems like our kids are the exception. Don’t make fun of the kids who have less than you, don’t make fun of the overweight ones, or that kid or this kid.. but what about our kids? Our kids seem to be the group of kids (individuals) that is ok to make fun of. 

It seems that as a society, we are deeming children like my son as less.  We try to diminish their value and presence on this earth. When they are in fact humans! Just like YOU and ME.  They once grew in the womb of a woman who rubbed her belly all day long as she joyfully sang to them.  They have a mother and a father, who proudly love them. They might even have brothers and sisters who eagerly play with them! They have a heart that beats, a heart that loves.

..If I ever had to name anyone as my Hero, Ethan YOU ARE MY hero.

 

My son, who struggled to nurse and breathe at the same time, who struggled to sit up, to crawl, to walk. The little boy whose little heart is not completely healed, yet he looks at me everyday with the biggest smile on his face and determination glaring out of his eyes.  The little boy who cannot yet speak, who becomes overwhelmed with frustration because he cannot tell me what he wants. 

If you do not have a child like Ethan, you have no idea of the things in life you have taken for granted. My son has fought harder than most other kids, harder than his own sisters to get to where he is at in life; my son has to overcome an obstacle each and every single day. My son is the target of mockery and he will forever always be a target.

Yet, the whole wide world wants to ridicule him, when in reality he has proven himself more worthy than most of us. I have learned more from my son in the past 16 months, than I have ever learned anywhere else in the 27years prior to him. 

He has been the best life lesson I have ever been provided with. I am honored to be his mother. I am honored to call him my son. I am blessed. No money, no car..no house, no gadgets… no trip around the world, no trip around the universe could ever compare to what this little boy brings to my heart –and to my soul. 

…Take a good look at my son. He is amazing and if you just give him a chance, you will be in complete awe.  And your eyes will be left wide open with the truth.

 Erika 

(nothing more motivating than Goldfish)

I am in love…

IN LOVE… with a little boy I have never met.

His face, so sweet and round. Torture to know that he cannot be mine. 

Seamus … a little boy in an orphanage in Eastern Europe.

He is one of the many faces on Reece’s Rainbow waiting for their forever families. Even though I feel like we are his forever family.  My girls are on board; Santiago would do this in a heartbeat if we could. But we don’t have a homestudy (or the money for the agency fees) nor the money to get one started at this veary moment. 

If I did, I PROMISE we would get started on the process.  I know in my heart after the initial process, everything would begin to fall into place. 

It shatters me that I cannot do anything for Seamus. 

HE IS PERFECT for us. He is a month older than Ethan. They would be the bestest of friends and the bestest of brothers. 

I want to sing Itsy Bitsy Spicer to him, the way I do to Ethan. I want to kiss him goodnight. Give him bubble baths to splash in. I want to sit him across from Ethan on their wagon and pull them down the street. I want to teach him to wave and give kisses, the way Ethan does…. I just want to be his mom. 

From here, all I can do is pray. I pray that God continues to bless us in our finances, to get ourselves out of much debt as possible and able to save up for our adoption journey. As much as I want this little boy, I pray that he has a forever family by the time we are all straight. I pray that at that time another beautiful little boy will be waiting for us. 

Chevron Houston Marathon - Run for a Reason

The Down Syndrome Association of Houston is excited to announce that they will be one of the participating charities in the Chevron Houston Marathon!
What does that mean, that means that there will be individuals running for a reason:
To raise money for DSAH!


The 2011 Chevron Houston Marathon takes place on Sunday, January 30, 2011 at


George R. Brown Convention Center (GRB)
1001 Avenida de las Americas
Downtown Houston, 77010
6:45 a.m. - Wheelchair start
7:00 a.m. - First wave start
7:10 a.m. - Second wave start


We (DSAH) are definitely in need of happy faces and enthusiastic cheers to help our 11 runners (as well as everyone else) make it to the finish line!
We would also, very happily, take any donations!

To make a donation CLICK HERE
 Please help us make this a successful event!

Come join DSAH across the street for the post party at Discovery Green, look for the DSAH tent!

Click on the links below to read a little bit about some of our runners.
Lawrence Asher
Trish Jacquet
Maria Gil
Rene Enriquez
Paula Davis (DSAH VP)
Angie Levinthal
Hona Outlaw

http://www.dsah.org/

Down Syndrome Association of Houston

Our Mission:

"To Build a Brighter Future for Children and Adults with Down Syndrome"

Our Vision:

The Down Syndrome Association of Houston envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become accepted as a wonderfully normal part of a very diverse community.

About us:

We have been a part of the Houston community nearly 35 years and have assisted thousands of families. By offering support to new parents of babies with DS, assisting parents with challenges related to medical, therapeutic and educational issues, and working with educators and medical professionals, DSAH is committed to improving the lives and opportunities afforded to all persons with DS.

No words

To describe HOW MUCH I LOVE MY SON...

I just love him.

I hope the world can see the beauty I see in  him.

Happy New Year

I never got a chance to officially wish everyone a Happy New Years, so HAPPY NEW YEAR! (Ethan stole the spot light the other day, but honestly, he is more than welcomed to!)

2010, you were great.  I wont go into details, but it was an amazing year. Like any other year, full of ups and downs, but I am excited to say that 2010 had many more ups than downs!

2011, you will be even better. No doubt.

A few goals for this new year:

-I want to do more advocating, especially within the legislature. I want to speak up and fight for the rights of those with disabilities

.

-As the new Fundraising Director for DSAH, I want to make this an amazing year. Find new and exciting ways to bring in money. Step out of the box. 

-Work on Ethan’s communication skills. He is picking up on so much; this is the perfect time for signing and teaching him many new things. He only wants to sign “all done” and the only words he attempts are “hello”, “stop it”, and “no”. Yet “hello” sounds NOTHING like hello. “Stop it” is by far the cutest, if you are ever lucky to hear him. You know how it is, children don’t perform upon demand!

-To spend more quality time with the girls and help them reach their goals and dreams… through the year and throughout life.

-spend more time with the hubby and grow even closer to him. Like white on rice, not like rice with a side order of beans...

-Of course be debt free. We might not be 100% debt free by the end of this year, but we will knock out a lot of debt! Making life more comfortable.

-become more healthy and active.. but not as obsessed as I was with it in the past. I think that is how I burnt myself out. Hopefully be 40lbs lighter by the end of the year, and *fingers crossed* back in my size 4’s! 

-Get this adoption processed started! I have no idea or clue how to get it started. Anyone has any pointers, PLEASE let me know. I think as much as I would love to go international, and I am sure one day we will, I think I am leaning more towards domestic adoption. I don’t think I could handle being away from my children too long if we had to go overseas. 

-Most importantly, I want my relationship with God to continue to grow. I want to one day fall to my knees and have Him take over me, to lift my hands up to Him and take Him in wholeheartedly. 

I hope you continue to follow us in our great journey. And may your 2011 be full of many laughs, love, hugs and blessings! 

Erika 

BREAKING News - We have a TODDLER!

As in a baby that toddles (ok maybe not completely yet, but let me have my 10seconds of happiness)!!!


I had just gotten home from work and slipped into my lounge wear and came back to play with Ethan in the living room. After some bribing with paper he took small steps towards the paper. Of course we ran to get the camera and captured a few steps on camera.



Being the excited mom that I am, I ran to the laptop to share with the world (the video above). As I sat at my chair, from  the corner of my eye I seen a little baby toddle from my chair to almost the kitchen door! ALL ON HIS OWN! With no bribing! I go so excited that I guess I scared Ethan and started to cry. Sorry Ethan, but momma is so proud of you.

Of course, I dont assume he will be willing to walk everywhere just yet, but it's a start.
(BTW, in case you are wondering Ethan is 16 months.)

 My little man, I love him SO much.