The R-word, it hurts...

An old friend of mine just posted something on Facebook that really hurt so I think it's time for a post on how much words can hurt and hopefully get through to some of you how much it hurts. Rather than call them out on it, I hope to educate them along with others.
I actually remember the last time I said the word "ret@rded." I was pregnant with Joey and had just found out that he was going to have Down syndrome. I was watching TV when an actor did something crazy and I said out loud to myself, "that was so ret@rded!" 
I suddenly realized what I said, it had never dawned on me until that moment the power of what words can mean and how much they can hurt. Tears started streaming from my eyes as my thoughts instantly went to my baby boy that I was pregnant with as I felt him kick. I vowed from that moment on to never say that word again. 
The r-word is used to describe behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, if it just "slips out of your mouth," the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way...
Replace the r-word with a new one: RESPECT!

You can take the pledge to never say the r-word again at R-word, Spread the Word To End The Word. 
Please take one minute and listen that what John C. McGinley, a fellow parent of a child with Down syndrome has to say. Also, please take an extra minute and read Words Hit Like A Fist by Dave Hinsburger. 

DIY: I "Wheelie" Like You Valentine

With Valentine's Day less than 1 month away, I wanted to get a jump start on Leah and Joey's Valentines to hand out to their classes.

My dad went to an auction one day and bought an ENTIRE lot of matchbox cars brand new in the packages and there was many more than my kids will ever play with, LOL!! One of Joey's favorite things to play with is matchbox cars so I saw this as the perfect opportunity for Joey to give some to his classroom friends!

I got a package of Wilton Treat Bags at Walmart then printed off the labels and glued them to red construction paper. If anyone wants to download the labels and make your own, you can get it here.

Thank you to Avoiding the Laundry for the idea!!

DIY: On The Go Car Mat

Joey and Aiden LOVE to play with matchbox cars and I always have a few somewhere in my purse. Typically in church I'll give him a few of them to play with during mass but he gets bored after a few minutes. When I saw  a few of the "on the go" car mats on Pinterest, I knew I had to give it a whirl and see what I could come up with myself although I wish I would have made it a little bigger and added a handle to carry it by. I do know I want to make more of these as gifts!

Joey, our little dancer

This morning, I started looking through the old videos we took of Joey when he was younger. He LOVED dancing when he was a little toddler!! Enjoy!!! Now I just wish I would have taken more videos of Leah and Aiden, LOL!!

Make a video - it's fun, easy and free!
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Make a video - it's fun, easy and free!
www.onetruemedia.com

The Joys of Potty Training 2 Boys at Once...

Ugh... so not only are we in the process of potty training one boy but TWO!!! Two little boys that are both extremely stubborn and neither of which minds having on a dirty diaper... I've been changing diapers for almost the past 7 years...

With Aiden, we've tried using a sticker chart, bribing him with candy, action figures, matchbox cars, and I even went as far as decorating a "treasure chest" and showing him all the goodies I bought to put in it for him! And even aiming for cheerios didn't work!!

I've filled him full of fluids and taken him to the bathroom every 15-20 minutes. NOTHING IS WORKING! He's 3 1/2 years old, this is driving me insane that he's not ready! But with a little more time, I know he'll catch on soon! He's just so darn bullheaded, LOL!!

As for Joey... (sigh...), I've been changing his diapers for a very long time (he will be 7 in March...). I dream of the day when I will no longer have to change one of his diapers. They've been working with him at school and potty training as well. They even did a 3 day intense "potty training boot camp" where they pretty much moved his desk into the bathroom attached to his classroom and filled him full of fluids.

The "potty training book camp" helped  a little but we're still a way away from getting out of diapers. He will occasionally pee on the potty and if you catch him getting ready for a #2, you can typically get him to the bathroom in time.

I've tried books and story boards with both boys, Potty Time by Signing Time and Elmo's Potty Time as well...

I think the really big issue with Joey is though that it was discovered during his last hospital stay that his bladder is extremely large for his age. He likes to hold his pee and I'm not just talking a little, it's enough to where it would truly be painful for anyone else. They did a bladder & kidney ultrasound on him. They found out that his bladder is large enough to the point that a urologist was called in to take a peek and give their opinion. Time to add another medical specialist to the list, we go see the urologist in a few weeks.

I just pray and pray and pray that there will someday soon be an end to changing so many diapers. And to add to the frustration, Aiden uses the excuse that Joey still wears diapers as to why he can still wear them...

I will keep you updated on the progress with BOTH of the boys since I know MANY of you are in the same boat as us! If you have any tips or suggestions for either of them, I'm all ears, LOL!!

Here's a few of the articles I've read online:

Potty training any child

• Successful potty training for boys
• Potty training tips for boys
• 6 Tips for Potty Training Boys
• How to Potty Train a Toddler in 8 days

Potty training kiddos with Down syndrome

• Toilet Training & DS (Webinar from Boston Children's)
• Potty Training a Child With Down Syndrome
• More Potty Training Ideas for Children With Down Syndrome
• Toilet Training Children With Down Syndrome (NDSC article)
• Toilet Training Made Semi Easy (DS Health)

A Walk Down Memory Lane With Joey

I used to have a blog called Raising Joey. Unfortunately  I let the domain name expire and when that happened, I lost ALL of the posts I had written for over 5 years, my pregnancy with Joey up until Aiden was born. I have a lot of it backed up onto my computer but can't get it to download onto my new blog. Someday I'll figure it out, LOL!

Anyways, today I remembered the site that I had downloaded all of the old videos and slide shows I had made in the past, especially about Joey! I've been sitting here (almost in tears) watching them all.

 "The 21 Reasons Why I Chose Life:"

Make a video - it's fun, easy and free!
www.onetruemedia.com

And this one "I Can Change The World"

Make a video - it's fun, easy and free!
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When Joey first started walking (a HUGE milestone I must add!!)

Make a video - it's fun, easy and free!
www.onetruemedia.com

And it was love at first sight for Joey and Leah

Make a video - it's fun, easy and free!
www.onetruemedia.com

Googly eyed monsters

There's nothing better than project to help move a snow day along, LOL!! I had some googly eyes in my craft closet and thought making some monsters was an excellent idea after Joey watched Monsters Inc. last night! 

I just glued the eyes on paper, gave the kiddos markers and let their imaginations go wild (except I had to help Aiden and Joey a little...)!   

(Leah insisted on taking a picture of me, LOL!!)

 

More salt dough fun!!

I posted last month my recipe for salt dough and a few of the ornaments I made. I made these as well from Joey, Leah, and Aiden's hand prints. I hope to make this DYI project an annual tradition, this will be the perfect way to watch my kids grow through their hand prints. 

Book review: A Special Mother is Born

A little over one year ago, my friend Leticia Velaquez, a fellow mother who was also blessed with a child that has Down syndrome, Christina, published a book called, A Special Mother is Born. The book features "thirty three stories from Catholics whose children have disabilities including Down syndrome, autism, deafness, blindness, and trisomy 18 share the blessings God brought to their families' lives through their child. Contributors include former Senator Rick Santorum, Barbara Curtis, Lisa 'Jelly Mom' Barker, Mary Kellet, Kate Basi, and Dr. Gerard Nadal. Foreword by Mother Mary Agnes Donovan, SV, Superior of the Sisters of Life, with an afterword by Father Frank Pavone, head of Priests for Life."

I ordered it as soon as it was fresh off the press last year. I've been so bad about trying to get caught up with reading all the books I've purchased over the past year. I typically have 2-4 different books I'm be in the process of reading at any given time. But one month ago, I decided it was time to finally finish reading Leticia's book. 

I am so PROUD to call her my friend. Leticia is such an amazing Pro-life crusader and advocate for those who cannot speak for themselves. In addition to being the author of this book, she is also the co-founder of KIDS (Keep Infants with Down Syndrome), she's had her work published in numerous Catholic publications, and Leticia also has a few different blogs Cause of Our Joy, Causa Nostrae Laetitae, and Catholic Media Review. You can also visit A Special Mother is Born's website.

Each of the authors in a A Special Mother is Born helps to give light for anyone wanting to understand what us mothers of children that have special needs go through and also how we use our faith to help us going especially in a time of need. 

With each stories I read, the fellow mothers of these beautiful children, shows an extremely, profound deep love in each of the mothers' stories and how God helps them each in their own way. I find myself on a daily basis calling to God to help guide me as a mother especially when it comes to Joey and his needs. 

A Special Mother is Born has recently has recently been approved by the Catholic Writers Guild. 

I highly suggest A Special Mother is Born for any new mother or one who has received a prenatal diagnosis of any diagnosis or even any family member who might need a deeper understanding of what we, as parents might be going through raising a child with a disability. 

Leticia and I in 2008 with Joey and Christina

Medjugorje & Joey's Miracle

About two months ago, a group of my friends from church made the pilgrimage to Medjugorje where the Blessed Virgin Mary has been appearing to a group of  6 school aged children starting June 24, 1981 and still appear to them to this day. More 1 million people visit the site where the Blessed Mother appeared. You can learn more about Megjugorje here. 

When I found out that my friends were making a trip there, I jumped at the chance to send a prayer intention with them for Joey. The number one thing more than ANYTHING I want for him is to talk. I would give anything to hear "mommy" come out of his mouth. 

About one week after they returned from their journey, I got a note sent home from Joey's teacher saying that he said "hi." I kind of brushed it off and thought nothing of it. A few days later, I said "hi Joey," and he put his hand to his mouth and made the sound an "h" and then waved to me!! My heart jumped for joy! After 6 1/2 years of being non-verbal, I heard the first verbal attempt out of my son EVER besides grunts, growls and laughter! 

I waited a little bit and said, "Joey say hi", he looked at me and did it again!! This time, my eyes filled with tears of joy! A few days later, after hearing him say it, I took him to church and low and behold he said "hi" and waved to our priest who was one of the people that went to Medjugorje. I could see the look of joy in Father's eyes when he heard Joey. 

Since then, Joey has also been excelling in school and is even starting occasionally going to the bathroom on the toilet (being potty trained is also something I pray will happen with Joey someday!). 

I truly believe our wonderful Blessed Mother has interceded with Joey! 

Hail Mary, full of grace, 

the Lord is with thee, 

blessed art thou amongst women 

and blessed is the fruit of thy womb, Jesus. 

Holy Mary Mother of God, 

pray for us sinners now 

and at the hour of our death. 

Amen.

Tips for an easier Christmas with your child with special needs

After I posted about our visit to Santa, I thought I would share a few resources I've found to help fellow families that have children with Down syndrome, Autism or even a Sensory Processing Disorder around Christmas.

Joey gets over stimulated VERY easily, especially in situations/ events that don't happen on a daily basis. I'm talking total meltdowns or just going to hid in a corner/ another room away from everyone else.

I do want to start by saying that Joey LOVES seeing Santa on TV (obviously not in person) and watching children's programs on TV about Christmas and he LOVES our Christmas tree!!!

The past few years we've barely gotten him to open up a wrapped gift, he just can't handle it. It's very upsetting at times seeing Leah and Aiden opening up gifts on Christmas morning and Joey wanting no part of it. This year, I've decided to try gift bags with his gifts rather than wrapping them to see if that makes a difference.

It's so difficult that he won't sit at the table to eat a meal during any holiday or event at my in-laws house. I just want to see him participate with our entire family but I know it's too much for him. I just hold onto the hope that someday he will participate in the festivities rather than hanging out in the family room watching Mickey Mouse Clubhouse on TV while we all eat.

Needless to say, I'm desperate to find new ideas of things to try during this holiday season with him! I've been surfing the web reading other parents experiences and any advice that they might have to share. I wanted to share my findings with anyone who may possibly be in the same boat as us. Here are some of the articles/ blog posts I've found that may also help you out:

• Talk about Autism: Tips for having an autism-friendly Christmas
• Making the holidays happier for children with special needs
• 5 Tips to help children with special needs feel comfortable at holiday parties
• Enjoy the magic of Christmas, Autism style
• Holiday gifts for Autistic children
• Autism & Christmas: Different but no less 
• 12 Days of Autism Christmas
• Living Well with Autism: December & Christmas
• The Autism Christmas Guide: What to get a child with Autism on your Christmas list
• What does Little Suzie want for Christmas? 

As I find more articles and blog posts, I will post them. 

Visiting Santa

I couldn't decided whether or not to take Joey with us to see Santa due to all of his sensory problems and the chance of getting over stimulated. I didn't even attempt last year mostly due to the fact he had major intestinal surgery less than 1 month before and I didn't want to expose him to all the germs that might be on Santa from all the other children. The year before that was a nightmare but I was hoping 2 years later things might be different. This year, I wanted to give it a try....

We get to the mall about 7:15 and there was a jazz band playing. The noise instantly freaked him out but I knew that it would be the only chance mostly due to the fact I knew I wouldn't have the energy to get all three kids dressed and to the mall again before Christmas. Not to mention, we coordinated with my sister in law to meet us there.

It finally becomes our turn to go see Santa, the second Joey laid eyes on him, it was a total meltdown... Santa was totally awesome, he invited my husband and I to join in on the fun. Aiden jumped right up onto his lap. Leah was a little shy, so my husband held her on his lap. As for Joey, I held him and hoped for the best, LOL!!

The end result was this...