Tuesday, March 31, 2009

{{Spead the Word to End the Word}}

Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends. Using "retard" as a term of derision is just as cruel and offensive as any other slur.
What It's All About Spread the Word to End the Word is raising the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it. America is being asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities

I hope that whom ever is reading this has heard of this event that is occuring all across America today.

Yup, you guessed it, it is something that I hold dear to my heart. I must say that I am sooooo proud of my small town school today. Austin, my 14 year old, came home and told me that the school has the "Spread the Word to End the Word" posters throughout the school and there has been great discussions about it in his classes. They are having a guest speaker today to talk about this HURTFUL word. I can't wait to thank this woman named, "Kathy" who is going to get up there in front of students age 12-18 and talk about getting rid of the "R" word.

I hate the fact that "it takes one to know one". Really. I don't get offended by the stranger in Target (don't get me wrong, I still cringe at the sound but I get over it) who uses it but when it's someone I know, when it's someone that knows Molly, it just ticks me off!!! It's disrespectful to Molly. (I won't get into the "short bus" comments that I hear!) Why am I so offended? Because my sweet and Innocent daughter, who wouldn't hurt a fly is going to have to hear the "R" word several times in her lifetime and let me tell you, it won't take Molly long to figure out that this word labels HER!!! How hurtful AND disrespectful to her. It is NOT of her doing or choice that she takes longer to get the words out, or it takes longer to read, and do math. She is doing the best she can. So when I hear my friends and close family members use the "R" word when they can't figure out a problem or have a hard time with something, I take it personally.

A personal message from John C. McGinley:
Make no mistake about it: WORDS DO HURT! And when you pepper your speak with “retard” and “retarded,” you are spreading hurt. So stop it. Stop saying “retard” and “retarded.” Those words suck! You are better than that and you definitely do not need to be “that guy.”

So please, for the sake of Molly, pledge today, RIGHT NOW to use a different word...

Saturday, March 21, 2009

World Down Syndrome Day!

Yeah! A day for Molly. Today is 3/21. Molly has 3 21st chromosomes!

So, go kiss someone with Trisomy 21!!

Thursday, March 19, 2009

Would I? {{LOOOONG POST!}}

Take Miss Molly's Extra Chromosome away if given the chance? (this is the blogger buzz today)
Short Version: Not in this lifetime

Long version: I am in love with all my kids. They each teach me and show me something new each day. I don't know if somewhere, deep down, I knew that I would have a child with special needs but I embrace every minute with her. It frustrates me that I have to work so hard with her on so many things, yet, I love every second of it. I get so excited and proud and start crying everytime she does something new! What an awesome, awesome feeling that is.
When I am sad, sooooo darn sad, by the days events, I get home or wake up to that sweet little princess looking at me saying, "mama" and smiling. The big unconditional loving hugs are breathtaking. Yes, absolutely breathtaking. My heart swells at the thought of these moments in my life. She is so kind natured. To those parents of a child with DS, you know what I mean. I love each of my babies the same, yet different. Molly is truly a child of GOD and I am soooo proud to be her mommy. I have said this at least a dozen times over, but I know how lucky I am that she is and always has been healthy and maybe, just maybe, that is why I do not wish the extra chromosome away. I read many blogs of the health struggles with DS and I really don't get frazzled by it so maybe not?
I am one lucky woman. I have my two boys, two girls (Twins to boot!) and THREE 21st chromosomes.

I received this email today and if you have time, please read. I think it puts my words onto paper (in a cute way). Exactly how I feel in regards to being a mommy to a child with DS:
Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual.Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed.The section of the brain used in logical thought undergoes dramatic changes. Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time.The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load.Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain.Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Thursday, March 12, 2009

Molly's Corner

Molly is really turning from a toddler to a preschooler the past couple of weeks. Her verbal/language expression is growing by leaps and bounds. When someone leaves the house she says, "Bye! See you later!" With her short little stubby hand waving high in the air. She, of course, has her own version of "see you later". She makes sounds (just the right amount of syllables and ends it with "ater"). She also reads books to herself--too cute. She sits on the floor and reads, "blah, blah Ah-oh:" "blah, blah, Daddy" "Blah, blah. Ah-oh mom!" etc. All the while turning each page (we have been working on this--way to go Miss Molly! You've reached yet another goal!) I have this all on video but I haven't figured out or had the time to download it.

One more thing. The ladies go to a home daycare at the present time. Issues have come and gone and have decided to move the ladies to a public daycare. Unfortunately, they don't have openings until July (when they become 33 months old and can be in the "Young Pre" room). I have been debating this for about a year now. Molly could really benefit from a structured setting.

We finally went for our official tour yesterday and brought Maggie and Molly with. When we arrived in the classroom, the kids were getting a story read to them. Maggie (turns to stone in public!) stayed very close to her daddy and Molly took off across the room, stepped up to the story time, sat right in the front row and says, "Hi" and proceeded to listen to the story. This child cracks me up!

It isn't a "large" public daycare. There are only 10-14 enrolled in the young preschool room. They teach them life skills (teeth brushing, potty training, shoe tying, etc.) and has a full preschool curriculum. I asked if they do sign language as this is how Molly communicates most of the time and she said yes, they do a lot of sign--Cool! They were doing a science experiment when I was there. The older preschool kids were making cookies from scratch. They go on walks to the park, bakery (where they get to make a cake!), and the library. All the things they DON'T do in the home daycare. It got me soooo excited; especially for Molly. Now I can hardly wait for July!

Just one quick note on Speech. They gave me one evaluation session three weeks ago. She was impressed with Molly's amount of signs she does (but she doesn't talk!), she was "so impressed" with her ability to perform tasks like feed the baby and pick the right object she asks for (but she doesn't talk!). Molly does NOT, for anyone, follow directions. "Go get the baby, Molly" Nope, not happening. She kept trying to get her to do that. She just doesn't have that skill. Oh, and she doesn't talk! She asks me if she has a least 10 words. Yes, but nothing more. I know all the tests she was performing shows her how well Molly can express herself and her ability to communicate besides verbally but I just want to know what I can do to get her to talk more. I am afraid that by her (the ST) comments that she is "so impressed" with Molly that she won't give her her service of Speech Therapy. They seem to cut corners all over the place. When she arrived I had to sign a sheet of paper that stated that "This is a special request by the parent as speech is not allotted until the child turns 36 months" Whatever, people! Just help my child TALK so she can communicate normally with the rest of her peers. Let's get real; kids talk, not sign!

Sunday, March 8, 2009

The T21 Traveling Afghan

I am excited to be a part of the T21 Traveling Afghan. I seen it couple of weeks ago and have been truly too busy to sign up. I am actually excited that I waited a while as now I get to read and see so much more--LOL!

Just click on the icon on my sidebar to read more about it.

Saturday, March 7, 2009

Shane Martin

  • Mike, his brother John, and a few of his friends know Shane Martin. He is truly an amazing artist. We went to see him in Maple Grove last night and had a great time. It was a very much needed night out after the insanely long week Mike and I had. There is nothing that beats great live music and friends all wrapped up into one package--LOL!!


**SHANE** with Mike and John

The ladies
Jennifer (my sister-in-law) and I

The Happy Couple...

Me with Dennette

John and Jennifer

Mike with his Buddies Jerome and Aaron

Friday, March 6, 2009

Mag Pie's Corner

Maggie still sleeps on the floor of her bedroom at night. It is the oddest thing. Back when we took her out of her crib many many months ago, we put the gate up at her door so she couldn't get out. You know, to keep her safe. The first week or so she would cry so hard about the gate being up. I felt so bad. I felt like I was punishing her and she thought she was being punished. So, I tried NOT putting the gate up. Well, Mike woke up one night at 2am and found Maggie casually walking up the stairs. So, the gate went back up. Needless to say, she has been sleeping right by the door with the gate up. Now, if you don't put the gate up, she gets upset. "Put the gate up, mommy! Put the gate up mommy." We have tried several times to try to get her to sleep in her bed with no such luck. When my friend watched her, she literally slept on the floor next to Molly.

I have been thinking of how I can get her out the habit. New bunk beds for the ladies? Two twin beds? One full size bed? Before I can do this, I have to transition Molly out of her crib to the daybed, right?? So, last night I put Molly in Maggie's converted crib to daybed so see how she would do. WRONG CHOICE!!!! Maggie totally freaked! Now, Maggie is usually a pretty good girl. Rare tantrums. Nope, not this time! All out fit! Screaming at the top of her lungs, stopping her feet and jumping up and down, crying so hard while YELLING "Molly sleep in her bed! That is MY bed. Get out, Molly! My bed!" Seriously! I was not expecting that reaction. Holy buckets, child of mine! I asked Maggie if she wanted to sleep in her bed and, of course, she says no. Lesson learned.

On a positive note, Maggie is completely potty trained. She still has an occasional accident but they are far and between one another. I feel I have defeated a great battle. Only one child left in diapers---whoo hoo! Molly sits on the potty each day. Once in a while she will piddle and not really know what is going on but I need to keep with it. My goal is to have her trained by three, which is in late September. But we all know that Molly does things on her own time. I am just hoping that she is ready to go in big girl undies come August!

Thursday, March 5, 2009

Heartwarming story

Yeah, yeah, yeah, I have been MIA for a while now. Just got done working a lot of HARD and LONG days.

I started this blog with the intent to journal about my family. This is still true but I have found that I have enjoyed blogging about our life with a child with special needs and down syndrome.From the moment we learned of her diagnosis, I have taken such a strong and deep interest and desire to educate myself and others of what DS means. I have such a deep love for all children with DS. They warm my heart. I feel so lucky to have Molly in our family. She teaches not only our family but friends and neighbors so much. In other words, this blog entry will be again about life with a special needs child.

Recently, I have come in contact with a family with a surprise diagnosis of Trisomy 13. It brought me back to the early days of our surprise diagnosis. Me and this mom have a lot in common and talked for quite sometime. And by chance (or not??), I came across an email that I have saved in my box for over two years. I received this from an online support group and it really gave me encouragement. I shared it with this mom and I feel inclined to share it with you all. (I did forward it to my family and friends so this will be a repeat for you but is worth reading again!).

"As a small group of political and church leaders look on, Jesus lifts a mentally handicapped child out of her high chair, kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel. As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjuror. I gave this mite a gift I denied all of you -- eternal innocence. To you she looks imperfect -- but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of {my} hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune...More! She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"