Wordless Wednesday

Early Intervention and it's benefits

I was skeptical at first. I didn't have a lot of faith in Early Intervention but as time has gone on I realize that these people that we see almost every week have played a huge part in Liliana's success. One of the best decisions I have made as a parent of a child with Ds was to get her involved in as much therapy as I possibly could. Our Speech therapist, Occupational therapist, and Physical therapist just marvel at how much progress Liliana has made being that she went through so much in her first year of life. I also am one proud mama, because I really can see Liliana making small strides but in the scheme of things it's HUGE! Below I have included a link to an article from the National Down Syndrome Society website. This article just talks about the importance of early intervention and gives some valuable resources to find help.

http://www.ndss.org/index.php?option=com_content&view=article&id=221:early-in

An Unusual Encounter

Lily and I went to the clinic today for a GI check-up to see if our GI doc could give us some insight into why her mic-key buttons keep coming out. Well, that appointment went pretty much as I thought it would. Dr. M didn't have a clue as to why the buttons are coming out. She speculated that maybe Lily swallowed something and we didn't know it....hmmmmhmmm...Ahhyeah right? She has just started eating Stage 2 baby food and cereal regularly. I highly doubt she swallowed something. Anyways, she couldn't explain it and basically brushed it off to a defect on the manufacturer's part. Pretty much what everyone has been saying. As I said in my recent posts thank God that Kimberly Clark is so willing to replace those buggers without charging.

Anyways, while we were at the clinic I went ahead and ordered ahead her Prilosec medicine because it is a compounded medicine and has to be made in advance and kept refrigerated. We usually have it shipped to our house but this time I decided to pick it up. While waiting outside the elevators to the M building, I was on my cell talking to Bill letting him know how our appointment with GI had went. When all of the sudden I look up and guess who is standing there next to me? The surgeon that did all of Liliana's heart surgeries. I was startled by his presence because this guy is not a very visible man. Believe me when I say that because the entire time we spent 3 1/2 months there we hardly ever saw the man and never in passing. Well, I immediately said, "Dr. Mavroudis, hello!" He greeted me with a friendly handshake and I followed with, "Look how good Lily is doing! He said, "Refresh, my memory. What did I do for her?" I said, "Complete AV Canal Defect with an extremely abnormal mitral valve. She had 3 surgeries in one hospital stay. He says, "Oh, yeah that's right she gave me quite a fit! God bless her! So glad she is doing so well!" I said, "Yes, yes she is!" The elevator stopped on the fourth floor at this point going right past the second floor that we were supposed to get off on due to my complete negligence. He said, "Getting off here?" I said, "No, no thank you. " Then we said good-bye and he left. It was so strange. I guess I was a bit taken back when he did not remember Lily and all the time that she had spent in the hospital. I know he is a busy man and has done literally 1,000's of surgeries but come on! You forgot about Liliana! I was totally brought back to November 4, 2008 the moment that I saw him. The memories and the fears all came back, but after he left there it was just me and my Lily. My perfect little angel. My MIRACLE baby and yes he did play a BIG part in why she is here today and I will never forget that. He might have forgotten but I will never forget. It is etched in my memory forever because if it wasn't for him and the work of our loving God she would not have had another chance. I am so grateful and I am so thankful! I am blessed!

Will You Be a Johnny Today?

When was the last time you did something for someone and did it from the heart? When was the last time you did something just because you wanted to show you cared and make a difference in someone else's life? People are always saying that individuals with Down syndrome have so much love to give, so much love to share, and they give it so freely and so openly. They are not afraid to let others know how much they care. I think we could learn a lot about love and caring from those with Down syndrome. If we all tried to make a difference in someone else's life what a wonderful world this would be! Many of you may already have seen this video clip, but I ask you today to watch it again and just like the video says, "Will you be a Johnny today?" Don't answer that question until you are done watching the video. Follow the link.

http://www.stservicemovie.com/

Matthew 25:31-46 (New International Version)

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was hungry, you gave me to eat;
When I was thirsty, you gave me to drink.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was homeless, you opened your door;
When I was naked, you gave me your coat.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers;
That you do unto me.

When I was weary, you helped me find rest.
When I was anxious, you calmed all my fears.
Now enter into the home of My Father.

Whatsoever you do to the least of my brothers
That you do unto me.

Set Your Goals High! The Futures Looking Bright!

As I have become more and more familiar with the world of Ds and all that it has to offer I have come to realize that there is nothing that a person with Ds can't do if they really set there mind to it. I had worries and doubts about Liliana's future but now after hearing other people's testimonies and stories I am filled with great anticipation for what lies ahead. It's been an amazing journey so far but there is so much more to come. Many people inspire me right here in the blogosphere daily and I thank all of you that share with me and the millions of other people that read your blogs regularly. It is comforting to know that we are not alone in this journey and that those that have gone before us are paving the way to a brighter future for all. I am including a link to a website about an amazing young gentleman with Ds. He is 27 years old and plays 6 different instruments! He is awesome! Surf around on his website and in particular click on the link to view video clips it is such a delight to watch! Have a great weekend and don't forget to always set your goals high when it comes to our Ds kids because the future is looking very, very bright!

Sujeet Dasai: Website
http://www.sujeet.com/

Day #2: 31 for 21

Today I was thinking about how I felt when I first found out that Liliana had Ds. I felt angry, scared, and very confused. I reached out to some of the local support groups in my community for support. I remember talking to Laura from The Up Side of Downs here in Cleveland and how supportive she was for me. She helped give me a sense that all would be ok. That it wasn't going to be easy but that it would be the most incredible journey I would ever take. She was right! I can't imagine life without my Liliana. She is the most amazing child to me! It reminds me once again of the memory verse for Kidz Zone at church this Sunday. Psalm 139:14 - "How you made me is amazing and wonderful!" That completely expresses how I feel about Lily and how God created her. If you click on the link above it will take you to their website which is put together very well. They have a lot of good things to offer on there. Below is a list of "Proper Language" to use when referring to children or adults with Down syndrome. Much of this information I did not know until I had Liliana. I hope that this little bit of information will help educate those people out there that may not be aware of what is acceptable and what isn't.

Also the article at the bottom entitled, "If People With Down syndrome Ruled the World" is very interesting and thought provoking. Check it out!

Taken from http://www.theupsideofdowns.org/

Proper Language Guide

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The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs".

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability
   • A "person with a disability", not a "disabled person"
   • A "child with autism", not an "autistic child"
2. Use emotionally neutral expressions
   • A person "with" cerebral palsy, not "afflicted with" cerebral palsy
   • An individual who had a stroke, not a stroke "victim"
   • A person "has" Down syndrome, not "suffers from" Down syndrome
3. Emphasize abilities, not limitations
   • A person "uses a wheelchair", not "wheelchair-bound"
   • A child "receives special education services", not "in special ed"
4. Adopt preferred language
   • A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
   • "Typically developing" or "typical" is preferred over "normal"
   • "Accessible" parking space or hotel room is preferred over "handicapped"

Guidelines from the National Down Syndrome Congress

Article - If People with Down Syndrome Ruled the World

National Down Syndrome Awareness Month!

Hey everyone! In case you haven't heard it is National Down Syndrome Awareness month and the challenge at http://unringingthebell.typepad.com/ is 31 posts about Trisomy 21! I have never done this before so I think it will be fun! I have been out of practice with blogging on a regular basis with all the drama in my life this summer. It will be a good way to get back in the routine and share stories, information, and vent about Ds. So, for the first day I thought I would post a link to a video about mic-key buttons. I know a lot of Ds kids don't have one but there are a lot of kids that do. Since it has become my source of stress lately, I thought it might be worthwhile to share with everyone just exactly what I have to go through every time one of these little buggers comes out. Oh and not to mention, what a stressful morning today was...mic-key button number 4 failed and came out. So I had to put in mic-key button number 5 and I put in another call to good ol' Kimberly Clark to ask for another replacement, which they will be sending by the way. I also called the GI department at the clinic and moved Lily's appointment up to Monday instead of October 12th just to make sure something isn't going on with her that may be causing the buttons to fail. Click on the link below to view a short video about how to change a mic-key button (this video is from you tube and I thought it was done very tastefully and is very informative) and Happy Fall, Happy October, and 3 cheers for Down syndrome awareness!

http://www.youtube.com/watch?v=Mn4ePSBiCTk&feature=related