31 FOR 21, Day 2

I think we’ve all said it at one time or another.
“That’s retarded.” “You’re a retard.”


I used to foolishly utter these phrases without giving a second thought. Today? I CRINGE when I hear the "R" word.

I don’t view my son as being “retarded.” I never have and I never will. TAKE THAT, OUTDATED TEXTBOOKS! However, this word is unfortunately used to make fun of or describe individuals with intellectual disabilities. You see, this is where it becomes personal and hurtful.

Next time the person in front of you forgets to use his or her blinker, please don’t call them a “retard.” If you’re one of those people that just HAVE to say something when someone does something that offends you or makes you mad, please use another word. I can think of several different expletives that don't begin with the letter "r". I won’t list them here, but you get my drift. If your friend does something stupid, please don’t refer to him or her as “retarded.”

I’m sure you’re wondering WHY I care? After all, you’re not talking about MY child. I know most people don’t mean it in a derogatory manner. Like cursing, I think this word “retard” is used mostly out of habit. Well, it’s a bad habit.

No, I’m not being overly sensitive. This word is often used to describe something NEGATIVE. Most of all, it's hurtful.

When you’re complimenting one of your friends, you wouldn’t say: Your hair looks retarded.

You would say: Your hair looks nice.

My point is this: The word “retarded” is not a word that’s used to describe something nice or pleasant. I understand the need to express your feelings and I’m all for that! However, there are so many other words that you could use. Next time you’re about to say, “That’s retarded.” Or “You’re such a retard”…I want you to think about this face:

The term “Mentally Retarded” is outdated. My son and all of his friends with an extra chromosome are NOT retarded. Again, TAKE THAT OUTDATED TEXTBOOKS. They have an intellectual disability. Most of all, they have feelings...and parents who love them. Think about how much you love your brother, sister, mom or dad. Now, think about how you would feel if someone were to do something to hurt one of them. Multiply those feelings by 100000000. That's how we (parents) feel when you use the word "retarded."

THINK BEFORE YOU SPEAK!

According to NDSS.ORG:

While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

31 for 21, DAY 1

The most common response I received from others after finding out Austin had Down syndrome was “I’m sorry.” It’s a natural response, I suppose. However, I didn’t need anyone to be or feel sorry. I wasn’t grieving. My child was (for the most part) healthy. I found solace in talking to other parents on the Down Syndrome Message Board on Babycenter.com. It was there that I was congratulated on the birth of my son, rather than pitied. It’s important for people to understand that regardless of any diagnosis, we still have the title of “Mommy.” I was a new mom. My son’s birth wasn’t some unfortunate event that I look back on with sadness. It was the happiest day of my life. I didn’t know if he had Down syndrome or not when he was first born, but it didn’t matter. When I held Austin for the first time, nothing else mattered and I immediately fell in love with him. He was what God meant for me to have.

There are several emotions and thoughts that consume your mind upon finding out that your child has Down syndrome. You will probably have the urge to google everything about Down syndrome. I would discourage new parents from doing that. A lot of the information on the internet is outdated, negative and flat out ridiculous. There are some websites that are helpful(*see the bottom of this post for a list of helpful websites), but sadly, a lot of them refer to Down syndrome as an illness or something that our children “suffer” from. Perhaps the people who write stuff like that “suffer” from stupidity? No one can tell you what to expect, what your child will or won’t do. NO ONE! Individuals with Down syndrome are unique. They are not “all the same.” One child with Down syndrome may struggle with gross motor skills, while another will not. One child may eat anything you put in front of him/her and another may struggle. One child may not struggle with Speech, while the other will require a lot of Speech Therapy. We can’t predict the future for a typical child, so why do that to a child with Down syndrome?

It’s important to remember “people first” language when you’re talking about a child with Down syndrome. What does that mean? In a nut shell, don’t use Down syndrome to define the child. Here are some examples:

Incorrect: I saw a Down syndrome baby at the mall.

Correct: I saw a baby with Down syndrome at the mall.


It’s also important to not put a child with Down syndrome in a “group” or stereotype him/her.

Myth: People with Down syndrome are always happy.


Truth: People with Down syndrome have feelings, just like you and I. In other words, if something is bothering them, they may appear to be sad or even angry. The number of chromosomes we are born with doesn’t dictate our ability to experience different emotions.

That’s all for today…more tomorrow.

*Recommended Websites:

http://www.downsyndromedallas.org/

http://www.down-syndrome.org/

http://ndss.org/

http://nads.org/

31 FOR 21

It’s THAT time again, friends. Down Syndrome Awareness month will begin tomorrow. Last year, I participated in 31 FOR 21 in honor of Down Syndrome Awareness month. If you’re not familiar with 31 for 21, it’s basically writing a blog entry every day during the month of October to promote awareness for Down syndrome.

If you’d like to participate in 31 for 21, sign up HERE.

Our life is busy, as usual. Some days are low key and then there are days where I consider it a miracle from above that we were actually able to make it out the door. If you’re a parent, you understand. Austin’s Speech Therapist at Our Children’s House of Baylor is transferring to a different location (but still staying with the same company, just a different campus). Austin loves his Speech Therapist and responds so well to her. Therefore, we are “following” her to the new location. Austin receives Physical Therapy at Children’s Medical Center. The only reason we go to Children’s is because we adore and love our Physical Therapist! She is also transferring to a different location (but staying with the same company)…and we’re following her too. The theme of the week is: Stalking. Thankfully, both of his therapists are okay with this.

My blog will be undergoing a serious makeover in the next few weeks. I believe I’ve had this design for over a year. It’s definitely time for a change. I wish I had more time to brush up my HTML and design skills…maybe one day?

I keep debating whether or not I want to put Austin in THE RISE . Don’t get me wrong, I LOVE the school. I know Austin would thrive and most of all, LEARN AND THRIVE IN A NURTURING ENVIRONMENT! He’d also be safe and I would have peace of mind. My only problem is that children with developmental delays MUST attend 5 days a week. There are not part time options with The Rise. I could always put him in a Christian Pre School 3 days a week. However, I don’t know that they would be as “accepting.” All the teachers at The Rise have Masters Degrees. The Teacher’s aides are even required to have (at least) a Bachelor degree. Moreover, all of their degrees are related to Special Education.

Decisions, Decisions… MUST PRAY!

I’ll be back tomorrow (and EVERY day this month to promote Down syndrome awareness and of course, EDUCATE! )

Blessings,
K

Haircuts And Other Happenings

The month of September is coming to an end and I’m convinced someone pressed the fast forward button when I wasn’t looking.

Some of you may remember, but I write articles for The Down Syndrome Guild of Dallas that are published quarterly in their newsletter. I interviewed a family that is very near and dear to my heart. Here’s the link to the article; scroll down to page 6.

http://www.downsyndromedallas.org/newsletters/September%2011%20English%20Web%20Newsletter.pdf

Austin had his first haircut last month. He did so well and the woman who cut his hair said he was a “model first haircut baby.”

        BEFORE

AFTER

Austin has been such a stinker in all of his therapies lately. He’s beyond stubborn and tries to flash his cute little smile to get out of working. Luckily, his Physical Therapist and Speech Therapist know him very well. They can resist his sweet smile when it comes to therapy and working on his goals. His Occupational Therapist is also learning to resist his charm.

We saw the Pediatric Cardiologist last week. The hole in Austin’s heart is still there, but has shrunk from 10mm to 8mm. He will still require surgery to repair the hole, but his Cardiologist determined that he’s DEFINITELY a candidate for surgery that will go through his leg to repair the hole- verses open heart surgery. The right side of his heart is still significantly enlarged due to hole. However, it will go back to a normal size once the hole is repaired. We were looking at surgery at age 2. Dr. K now feels that we can wait until Austin is 2 ½ -3 for surgery.

We also saw our Genetic Doctor last week. He was very impressed with Austin and even noticed how good he is at problem solving. We are starting a new vitamin regimen that is considered “controversial” to some. Dr. Wilson supports our new plan for beginning Nutrivine.

Last Sunday marks 8 weeks of breaking out into hives. I had a blood test to determine what I’m allergic to and much to my dismay… I’m not allergic to any of the common food and airborne allergies. Obviously, the test cannot possibly look for EVERY allergy…so it’s likely I’ll never know WHAT I’m allergic to. The hives have become less severe, but they are still present and rearing their ugly head. I bet you’re all itching just reading this... I just wish I KNEW what was causing this allergic reaction so I could make sure to avoid it.

That’s all for now.

Blessings,
K

Wake Me Up When September Ends

We have been so busy lately. I feel like I need to pencil in time to check my email and even take a shower! Don't worry, I always manage to get my shower in most days...even though it usually takes place at midnight.


I’m sure we can all recall (at one time or another) during our childhood hearing our mother or father tell us, “Well, that’s his or her loss” when you complained that someone didn’t want to be your friend or play with you that day at school. Austin's too young to grasp this concept just yet...and I feel like I'm too young to even think about having to give this "speech" as a parent.

I’ve been searching for a Christian Mother’s Day Out program for Austin to attend once or twice a week from 9:00-12:00. My sole purpose for putting Austin in a MDO Program is for him to socialize with other children and overcome his severe separation anxiety. I’ve been surprised with some of the responses I’ve received upon calling some of the programs. None of them (at least the MDO programs that I have called) have any sort of experience with children that have special needs. In fact, I could tell they really had no idea how to “handle” or even respond to my inquiry. Is it really that rare to inquire about enrolling your toddler who happens to have Down syndrome in a Mother’s Day Out Program? Part of me wanted to scream, “It’s just Down syndrome!” Another part of me wanted to cry because it was an unfortunate reminder that most people have preconceived ideas about Down syndrome. They believe the all too common stereotypes: All people with Down syndrome are the same…They are always happy. It must be really difficult to have a child with Down syndrome. I can’t imagine what I’d do if my child was born with Down syndrome? I feel sorry for that family.

Instead of crying, I will use my energy to EDUCATE AND INFORM because there is obviously a need for it! A diagnosis of Down syndrome isn’t devastating. It certainly changes things, but it’s not something I ever thought would “send me over the edge” so to speak. The truth is that my son’s extra chromosome isn’t the issue. In fact, Down syndrome (and all that comes with it) is a walk in the park compared to dealing with the different looks, stares and people who put limitations on my son just because his genetic make-up isn’t what’s considered “normal.”

I wish everyone would just treat Austin like “any other child.” When he gets older, I will expect him to have manners, say “ please” and “thank you”, raise his hand in school when he has a question, follow directions, rules, etc. We are blessed that our friends have never treated Austin differently. Everyone could learn a lesson from our amazing friends and family.

Austin had his 18 month well child visit a week ago. He weighs 22 pounds and 6 ounces. He’s grown vertically…so maybe that’s why he isn’t gaining weight? Dr. C didn’t seem too concerned because according to the growth chart, he’s proportionate. He’s a very finicky eater. In fact, I think we’ll start buying Pediasure by the case. He has sensory issues when it comes to food, but most of it is behavioral.


This week will be semi-busy, but next week is packed with our regular therapy and an appointment with the Pediatric Cardiologist AND the best Pediatric Genetic Doctor in the world! I’m nervous about the Cardiology appointment because I was told at his previous appointment that the hole in Austin’s heart will likely NOT close on its own. PRAY. PRAY. PRAY. I have Faith. God can do things that Doctors will never be able to explain. I pray that the hole will close on its own. I pray that the lord will heal my sweet baby’s heart. I KNOW that God can heal Austin’s heart. IN JESUS’ NAME I PRAY!

Then Jesus answered, "Woman, you have great faith! Your request is granted." And her daughter was healed from that very hour. – Matthew 15:28

The JOY of the LORD is my strength!

Have a blessed week, my friends. Hopefully it's a 4-day work week for most of you!
-K