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Thursday, February 26, 2009

Just Today....

Out side my window...Gray skies, cold weather, very windy
The time is... 3:40 p.m.
Today I feel... good!
I am thinking...about all the things I should be doing instead of being on the computer! :o)
At the moment,I am thankful...that all the kids are happy and healthy.
I am going... to make tacos for supper tonight.
I am wearing... black jeans and a gray t-shirt
I wish... I could take a nap! ;o)
I am reading... Circle of Grace
I am working on... keeping my sanity!
I am hearing... the girls playing with their princess dolls.
Around the house... Joey is napping and every few minutes the girls find it necessary to run through the house yelling and chasing each other. :O)

Wednesday, February 25, 2009

Bacteria Cake Anyone???

Tommie had to do a 7th grade science project about bacteria. He decided to bake a cake to show all the different parts and information. You can't really see them but he printed out labels on the computer to show what each item was. He worked so hard! Tuesday I got to be the one to deliver the bacteria cake to school in time for his class. Thankfully I didn't drop it! I would have been devastated! Anyway, no word on the grade yet (I of couse think it should be A+++ lol!) but it must have been delicious because this is all he brought home...

For more Special Exposure/Wordless Wednesday fun, visit MomDot, 5 Minutes for Mom, and 5 Minutes for Special Needs.

Monday, February 23, 2009

A day at Uncle Dale's...

Hello Monday! We have been doing okay ~ got Joey on an antibiotic for his sinus infection which is clearing up nicely. We are busy as usual ~ sometimes I don't know if we are coming or going! Friday night Shawn & I had a big night ~ we went to Walmart and to the local home builder's show. (just dreaming ~ and picking up free pens!) Sounds pretty exciting right! Well, at least we got out of the house together without any children. On Sunday we went to my Uncle Dale's (my mom's brother) and Aunt Lois's house in Blair to see my Aunt Marlene (my mom's sister) and Uncle Fred who are visiting from Minnesota. We had a terrific dinner and it was great to see them. Our whole crew went, along with my mom and my sister Andrea & Cooper. It made for quite an exciting trip! The following pictures are from Sunday ~ enjoy!

Lois, Dale, Fred, Marlene, Paul, Carol (my mom's other sister) and my mom (Janet)

Joey and Aunt Marlene playing pat-a-cake

Joey getting some lovin' from Aunt Carol

Cooper loves shoes!

Aunt Nanny, Emma & Abbie

Emma strikes a pose...

Fred, Shawn, Joey, & Greg (my cousin JoAnn's husband)

Carol, Janet, Marlene & JoAnn (my cousin)

Joey gets a little walking help from Aunt Carol...

Wednesday, February 18, 2009

Help free Frankie...

I read this story and my heart breaks. I could not imagine how I would feel if Joey were the one being treated so unfairly. I know you will feel the same way after you read it. To visit the family's website, click here. Please, let's help free Frankie...

Opinion: New Jersey system for independent living turned prison
By Nikki Weingartner.
Published 21 hours ago by ■ Nikki Weingartner

When the birth of a child results in a situation where a disability or handicap seemingly overwhelms the family, more often than not the fight for services seems like an all out war. But what happens when those services hold that person hostage?
Today across America, facilities for individuals with special needs is more the norm than the exception. From highly focused schools and living facilities to job placement programs, therapy and assisted independent living, those who once felt alone are now able to live an equally happy life in a modified environment.

However, for one young man who looked his handicap square in the eyes with the loving support of his mother and family, that desire to be like everyone else turned into his prison where he is still held captive today.

Frankie Macias was born in 1967 with a rare genetic disorder called CdLS, or Cornelia de Lange Syndrome. Although the disorder is mostly diagnosed by observable traits, those with CdLS usually have some form of mental retardation primarily in the mild to moderate category.

Frankie's mom raised her son as a single mom and involved him in activities such as Boy Scouts, martial arts, drum corp and religious activities and was a strong advocate for inclusion of special education children in a time when children with even the mildest of speech delays were segregated from what they called "normal." Although Frankie endured some horrific abuse by classmates during his time in public school, in 1988 he managed to graduate from high school at the age of 21.

His small stepping stones of accomplishment were about to become his ball and chain as Frankie Macias expressed a desire to live on his own and be independent.

His mother had helped him achieve as much normalcy in life as possible so far and unlike most "normal" graduates, her primary role didn't end with a diploma. Frankie's mother worked at finding him an independent living facility but three out-of-state locations proved insufficient, with one being shut down for what was labeled as "glaring deficiencies."

After five years and the state of New Jersey playing a game of tug-o-war about who was ultimately responsible for helping Frankie combined with a mother desperately trying to fulfill her son's wishes of living on his own but whose insurance resource was running dry, good news arrived and the New Jersey Division of Developmental Disabilities stepped up to the plate and put Frankie on a "Priority 1 Community Placement Wait List." However, this list was essentially bogus so in light of the error:

New Lisbon Developmental Center (NLDC), explaining that this arrangement would fill the gap until a home and services in the community were ready. With no other options available to her, Kathy reluctantly agreed.

Frankie was moved from his home to the temporary arrangement, whose institution consisted of partitioned walls and central toilet and showering facilities, with a "heavy emphasis on behavior modification," according to their own website.

Seven years after being held captive in the Lisbon facility with the ever elusive dangling carrot of probability that he would be given a home, always denied just before it happened, and the reports that he was being sexually abused, substantiated by write ups that he was not eating and other depressed behaviours, Frankie set a small fire in his room. No one was hurt and it was quickly extinguished. However, the state apparently was apt to make an example of him. Following criminal treatment in handcuffs, he finally received a transfer to another facility, but not one that was what the family had in mind.

Frankie spent the next three years in a prison like environment called a "Moderate Security Unit" until the charges were eventually dismissed. Even Joseph Lepore and Sean Michael Ryan who plead guilty to setting the dormitory fire that killed three students in New Jersey received lesser sentences of 5 years each, eligible for parole in 16 months. After serving his "time", Frankie remained in the prison camp as a guest of the facility, where even the most basic of needs required him to be electronically authorized. It was told in his story how he voided in saved drinking receptacles when "guards" refused to allow him to go to the restroom.

Today, Frankie Macias has been denied any assistance or community placement. In a loving effort to help her son live independently and defy all odds, the state of New Jersey and its team of professionals has carefully taken a spirited young man and broken him down into "medical categories" for which they have been able to presumably deny his release.

He has been denied the right to see his sister get married, denied the right to spend family holidays with his mother, he was even denied the right to have a simple picture of his baby niece.

A mother's desire to help her son live a "normal" life gone horribly wrong because of a caustic system that doesn't care. Frankie Macias is "still waiting" for placement...

To help in the fight to free Frankie Macias, please visit the family website. There are many different ways for individuals to help, if nothing more than by signing the petition to free this man. However, if you wish to write a letter to free Frankie:

Contact Governor Corzine
Governor Jon Corzine
P.O. Box 001
Trenton, NJ 08625
email him here

send copies to:

Jennifer Velez, Commissioner
Department of Human Services
140 East Front Street
Trenton, NJ 08625

Kenneth Ritchey, Assistant Commissioner
Department of Human Services,
Division of Developmental Disabilities
140 East Front Street
Trenton, NJ 08625
This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of DigitalJournal.com

To view the original article on Digital Journal, click here.

Sunday, February 15, 2009

CdLS Blog Challenge...25 random things x 2

Blog Challenge: 25 Random Things About Your Child With CdLS
This week's blog challenge is part 2 of 2. Last week you posted 25 random things about YOU as part of our yearly introductions. This week post 25 Random Things About Your Child with CdLS so we can get to know him or her better.

Well, I didn't get a chance to do last week's blog challenge, so I am going to roll it all into one big post. It's kind of hard to think of 25 things just about me, so I am making the first list into 25 random things about our family to help everyone get to know them a little bit better too. Then Joey will get his list all to himself. Are you ready? Here goes...

1. There is rarely a quiet moment in our house. With 7 people, 3 cats and a hectic schedule there isn't too much down time.
2. I dislike cooking. I used to like it but since our family has gotten so big it is more of a chore than anything. Sorry guys! Luckily Tommie has taken a shine to cooking and he's pretty good at it so I usually have a helper.
3. Emma and Abbie are the bosses of the house. And we all know it.
4. I never walk around barefoot. I always have shoes on. Even my "slippers" are an old pair of slip-on sandal type things. I also don't like feet.
5. Shawn & John make fun of me because of #4. They always try to touch me with their feet.
6. I go to our local Goodwill store at least once a week. I find some pretty good bargains! Last week I found a Lego table just like the one Joey played with when we went to high school for $3.00! It's something he didn't have and he loves it!
7. 25 things are a lot of things to think of. This is only #7 and I am already stuck!
8. Shawn and I have been married for 16 years. Yeah I know...boring! I'll try to think of some better stuff...
9. I love blogging. I love all the friendships I've made with people I might never have known. It is good for feeding the soul.
10. John is more of a laid back kind of guy. He loves sports and gives his all no matter what season it is. He also has a very special way with Joey and can always make him laugh. He gets very good grades.
11. Tommie is our go-getter. He loves sports too and always wants to be busy doing something. He is our social butterfly. He also gets very good grades.
12. Emma is Daddy's "pretty girl". She loves to play on the computer. She is also loving Barbies now. It's so great to find tiny barbie shoes everywhere and have naked Barbies all over. I don't know if it's just our house or not, but none of the dollies ever have clothes on.
13. Abbie is our baby. She is very affectionate and likes to do whatever Emma is doing. They play together pretty well with the occasional screaming match or hair pulling incidents.
14. Shawn is very good about helping out around the house. He is a great Dad. He likes to play with the little ones and give the older ones a hard time. He also loves attending their sporting events.
15. Some people think I am very organized but really I am not. Oh, I know where everything is that I need, there is just no system to it. It's something I'm working on.
16. 25 things are a lot of things to think of. Did I already mention that?
17. My Mom has Multiple Sclerosis. She was diagnosed about 5 years ago.
18. I like to write poetry. Usually I am inspired by something or write a poem for a special occasion. I am not crafty but would like to be.
19. I do not like to do laundry. I don't mind washing it but hate folding it and putting it away. When our dryer was broken we were actually more organized with our laundry situation than we are now that the dryer is replaced. Does that make sense?
20. I drink too much soda and not enough water. I am also a chronic ice chewer.
21. Shawn and I like to watch American Idol and Survivor. Of course we have to DVR everything and watch after the kids go to bed.
22. I'm not sure if any of us get enough sleep ~ except maybe the little ones.
23. I don't like the smell of ketchup or BBQ sauce. I will eat it but I can't let myself smell it. Try and figure out that trick!
24. John only eats one type of food at a time. For instance, say we are having hot dogs and mac & cheese. He will eat all the hot dog before he eats the macaroni. Strange-right?
25. We love all of our children dearly. Our life may not be perfect a lot of the time but it's our life and we wouldn't change a thing. (Except maybe to win the lottery! lol) We thank God every day for the many blessings he has given us.

And now for Joey's list....

1. He has the greatest giggle. When he really gets to laughing it is the funniest thing. His laugh is infectious. He just knows how to make people feel good.
2. He loves macaroni & cheese and Honey Buns.
3. He hates cold weather and the wind. I can't blame him ~ I don't like those things either.
4. He sleeps very well at night. On rare occasions he will get up in the middle of the night but not too often.
5. He loves Legos.
6. He loves light switches.
7. He loves music. Especially playing his pianos.
8. He loves to knock things over. Then he claps his hands and laughs.
9. He loves to torment his sisters and not let them forget that he is the big brother. He has been known to pull their hair and laugh.
10. He loves it when his big brothers play with him.
11. His favorite place to be is in his room.
12. He only takes one kind of medicine. It is a Prevacid solutab every other day. He also has eyedrops we put in when his eyes get sore.
13. He hates having his eyedrops put in.
14. He does not like to go to the doctor. Nothing personal to any of his doctors ~ they are all very nice. I just think he has been poked, prodded and held down so much he knows whats coming whenever we go to a doctor's office.
15. He will not wear hats or hoods of any kind. Or mittens.
16. He prefers to have his shoes on. (Hmmmm..I wonder who he takes after?)
17. He loves taking a bath. It was not always like that. It used to take 2 of us to give him a bath because he hated it so much. I'm not even sure what he got would constitute a bath. Now he hates to get out of the bath.
18. Joey eats everything orally. He has never had to be tube fed.
19. He loves to go to school. His social skills have really come a long way.
20. He loves to go to therapy. It wasn't always that way. We used to only be able to stay 10 or 15 minutes and then we would leave because he was so upset. Now, most of the time he doesn't want to leave.
21. He loves to climb on things. Anything.
22. He loves to figure out how things work. And he's really good at it.
23. He like to open and close things.
24. His favorite toy right now would have to be the Dora Magical Welcome House. It makes noise and has lots of cool stuff with it. And of course, he can knock it over and really make his sisters mad.
25. he is the greatest teacher I know.

Thanks for taking the time to get to know us better!

Saturday, February 14, 2009

Happy Valentine's Day!

Happy Valentine's Day! We are spending the day at home today digging ourselves out from the snowstorm yesterday. We did get about 6 inches ~ enough to make it a little tricky to get around. Unfortunately Joey seems like he is getting yet another sinus infection so will probably have to make a call to the doctor on Monday. I wanted to share a picture of the candy bar wrappers we made for Valentine's Day and passed out to Joey's teachers and therapists. Everybody loved them! I want to send out a big thank you to Sandi for helping me with this project. You can visit her over at Life with Jessica. I also want to share a video of the song Count Me In from Sesame Street. It's about how different and special each child is and shows typical kids and special needs kids together. The general consensus of our CdLS online support group is that there is a little boy with CdLS in this video. You can find him at 1:54 when you watch the video. Thanks to Heidi over at God's Grace in Practice for finding this and sharing it with us. Enjoy!

Friday, February 13, 2009

This is the view from our front door this morning ~ snow, snow and more snow! Yesterday it was so nice out ~ clear blue skies and the air was warm. Well, warm for being February in Nebraska! Joey and I didn't even wear coats when we went to therapy! And now today near blizzard conditions. They say we are to get anywhere from 6-12 inches. And for the icing on the cake, there is no school today due to a teacher inservice, my hubby decided to take a vacation day and Joey elected to get up at 5:30a.m. this morning (he is already napping on his bedroom floor). No school, no work and a blizzard. Boy, will we have some fun! Anybody willing to trade places with me for the day?

Monday, February 9, 2009

Joey goes to high school....

A friend of mine is a teacher in a nearby town and asked if I would come and speak to a couple of her classes about Cornelia de Lange Syndrome and our experiences we have had raising Joey. Of course I agreed and off we went to high school! It went really well and the kids were really interested. They asked a lot of great questions and I passed out CdLS pencils and bookmarks. He was really well behaved ~ thankfully there were some Legos there he could play with. As you can see from the pictures he had quite a fan club!

Thanks to Mollie for the opportunity to spread awareness about CdLS. We had a great time!

Thursday, February 5, 2009

Wednesday, February 4, 2009

Special Exposure/Wordless Wednesday ~ Shine on...

This morning when I was taking Joey & Emma to school, this was the gorgeous view of the sun we had. We haven't seen it around here for awhile. Even though it was like 5 degrees out this morning the sun came up proud and strong. Kind of like our special kiddos. Shine on, sunshine, shine on.

For more Special Exposure/Wordless Wednesday participants, visit 5 Minutes for Special Needs, 5 Minutes for Mom, and MomDot.

Sunday, February 1, 2009

CdLS Blog Challenge - Home Modifications/Childproofing

What kind of jerry-rigging or child-proofing have you done at home to meet the needs of your child with CdLS? This could be a serious or comical post. This could be for tube-feeding or any other medical needs, or any other kinds of modifications you have made. Add pictures, if you can.

Our house is what we like to call "Joey Proof". Since Joey became mobile, we have had to make a lot of changes to the interior decor of our home. Duct tape and nails have become as much of a necessity in our lives as food and water. I didn't realize how many things we have actually had to change around here until I really got to thinking about it today. And to us, it doesn't seem unnatural to have our home the way it is ~ it just seems normal to us. Here a few of the things we have had to do:

~There are no chairs at our kitchen table. Joey will climb on them to get on the table or move them to another spot to climb on something else.
~We cannot have any lamps in our home. Joey will pull them down or knock them over whenever he gets a chance.
~There are no knick-knacks, plants or other "pretties" where Joey can reach them. The few things we do display are put way up high.
~There are very few things hanging on the walls. If there is something on the wall, it has to be very securely hung as Joey will pull it down if he gets a chance to climb up and grab something.
~Our furniture is positioned according to where the electrical outlets are.
~We have duct tape adorning many of our cupboards and drawers. This has worked so far although now Joey is learning to peel off the tape so we will soon have to get some safety latches.
~There are several things in our home that have been knocked over. For example: recliners, computer monitor, trash cans, Joey's dresser and end tables just to name a few. Joey has an amazing amount of upper body strength.
~Joey's dresser is nailed to his bedroom floor. He would constantly pull out the drawers and knock over the dresser. We have his dresser positioned in front of the one outlet in his room we use for his lamp at night. The lamp is removed daily or it gets destroyed. There is a yard stick through the drawer handles to keep him from getting the drawers open. I am considering getting one of those lights you can hang up that you just push off and on. Of course then Joey would spend a great amount of time trying to figure out how to get to that light.
~We move Joey's crib to the middle of his room when he goes to bed. About the time we nailed his dresser to the floor, he learned to climb from his crib onto his dresser. The only things in his bedroom are his crib, his dresser and his toys. There are two outlets in his room that have covers screwed on them with no openings. Joey proves to be a regular magician when it comes to removing any type of outlet cover.
~Our bathroom, bedroom and basement doors remain closed at all times. We do not have to lock them yet but Joey is curious about how to work the handles so it probably won't be long before they will be locked.
~We cannot load or unload the dishwasher, take out the trash, cook or do much of anything in the kitchen when Joey is in the room. Unless of course we want some broken dishes or worse, a burned hand.
~Curtains? What are curtains?

Here is Joey attempting to climb on his dresser....

Alright!! I made it!

Here is one of his outlet covers....

Here is the ramp that was added to the house in 2007...

Okay, so we won't be winning any interior decorating awards for awhile. This is our life. This is our normal. And we wouldn't trade in our duct tape and bare walls for anything.

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