MOSAIC MOMENTS

Last week, Sequenom Inc., a maker of genetic testing, announced their launch of a public offering of 5.5 million of its common shares

According to the AP, “The company also will grant underwriters a 30-day option to purchase up to an additional 825,000 shares of common stock. All of the shares are being offered by Sequenom.”

Sequenom Inc., which makes genetic analysis products, announced earlier in the month that a prenatal test used to detect Down syndrome in a mother’s blood was successful in all 200 samples without any false positives.

Current testing options have a detection rate of between 70 percent and 90 percent, with false-positive rates as high as 5 percent.

Most people would see this as a positive happening. However, with the Down syndrome community under fire by last year’s ACOG’s recommendation that ALL pregnant women be screened for Down syndrome by the 20th week of pregnancy, this is just another step into eugenics for those with Down syndrome.

It isn’t that any of us is actually against prenatal testing. In some cases, prenatal testing is a positive step for the parents who are expecting a child with Down syndrome. However, what the Down syndrome community is against is the way the information is being given.

When a parent receives a diagnoses of Down syndrome, the MAJORITY of OB’s are giving outdated, misinformation. These parents are told their child will be a burden to their family, financially and emotionally. They are told their child will not live a long, fulfilling life. And, most are given the visual of a child who can not think or do for his/herself what-so-ever.

These OB’s PUSH—HARD to get the family to abort their child. Thus the reason for this testing before 20 weeks.

Many OB’s have stated that it is their GOAL to ensure that NO PERSON with Down syndrome is ever BORN! This…is eugenics!

As an advocate for those with Down syndrome and mosaic Down syndrome, we join the ranks to ensure that people with Down syndrome do not become extinct. As for now, with the abortion rate of 95% for those carrying a child with Down syndrome, it is without a doubt, that people with Down syndrome are an endangered species.

Sequenom expects to use proceeds from their stocks to develop diagnostic tests for use on its MassArray system and other platforms, and for general corporate purposes. The company currently has about 45.4 million common shares outstanding.

The only “good” thing about this testing from Sequenom is that it isn’t an amino where the baby is at high risk of dying.

People who are buying this stock are buying shares to wipe out Down syndrome.

Today during our church luncheon, Glenn and I were discussing with our preacher and his wife the lack of common courtesy we often see in the younger generation.

Twenty years ago, young adults knew how to respect their elders and when a lady was present, young men stood when the lady entered and watched their language as to not offend the lady.

However, it seems more and more that those in the this newest generation have lost what we considered to be common courtesy and respect.

As we analyzed why this generation has changed so drastically, the most qualified answer was that most of the parents are of the working and/or single generation and because they have to work such long hours, by the time they come home from work, cook dinner, help with homework, and see to everyone’s baths, they find that there are only just a few hours in the day they have to spend with their children.

I was once a working, single mother. I know how it is!

I think the biggest problem is, because parents are working and/or single they feel as though don’t have the time to spend in those few precious hours in the evening to teach their child the simple things like common courtesy and respect. After dinner and homework and baths, it is already bed time and most parents just can’t wait to collapse into their own bed once that last child is in their bed asleep.

However, it really doesn’t take much time to talk with your child about respect and courtesy. In fact, in most instances, it isn’t about “talking about it” at all! Children mimic everything they see their parent do! If the parent cusses like a sailor, the child will too! If the parent complains about an older person being too slow on the road, then the child views that as the older person doesn’t deserve respect.

The old saying “Do as I say and Not as I do” NEVER WORKS!

Children are sponges and will soak up all that the see and hear. So, be an example for your children. And, tell them why it is important to be courteous to others. Teach them those same old morals that you learned as a child and they will continue to pass them on to their next generation. And, most importantly, give your children the same respect you expect them to give to you and others around them. If they receive respect, they are more likely to give it as well.

Years ago, when Tim had just recently been diagnosed with mosaic Down syndrome and ADHD, my older son, Arron was six years old and playing baseball.

During one of his games, as the children sat in the dugout waiting their turn to bat, one of Arron’s team mates picked up a bat and was hitting the other children in the head with the bat. Thankfully, the boys were all wearing their batting helmets in anticipation of their turn at bat. However, they were still complaining and could still feel the bat vibrating through their helmets.

Not able to take the scene any longer, I got up and calmly asked the boy to stop. He looked at me as though I was speaking alien to him and said, “NO! I don’t have to!”

So, I turned to his mother, who had been watching the same scene this whole time, and told her that she needed to get her son to stop hitting the children.

Her reply… “He can’t help it. He has ADHD.”

I took a deep breath and counted to 10…. twice….

I told her that my son had mosaic Down syndrome and ADHD and I would NEVER allow him to hit another child, especially with a bat!

I explained that no matter what a child has, they still HAVE to behave and they still are expected to live with society.

She didn’t get it. She had that poor me and my poor son attitude and I often wonder if that child is now in the state prison system.

By making excuses for your child’s behavior and not correcting them when they are wrong, they will never learn the difference between right and wrong nor will they be able to live within society or have relationships with others because their behavior is unacceptable.

This is not to say, that you child wont act up, If they have a disability that impairs their behavior in some way, perhaps they have trouble understanding consequences for their actions, maybe they are impulsive and have trouble thinking things through first, but regardless of what the problem is, by making excuses for their actions, you are not helping your child what-so-ever! You are, in fact, hurting them.

Tim had all these problems, and he acted up throughout school. However, the difference is, I NEVER allowed excuses for his behavior. I expected him to behave like his peers and when he did not, he was disciplined. Eventually, he understood how to control his impulses and he understood that no matter what, if he wanted friends, he had to BE a friend.

Making excuses, no matter what the situation, will hurt your child’s future.

While on the subject of Pet Peeves another one of mine is using the “R” word.

According the the American Heritage Dictionary the definition for Retarded is:

1. Often Offensive Affected with mental retardation.
2. Occurring or developing later than desired or expected; delayed.

Mental Retardation is: Subnormal intellectual development as a result of congenital causes, brain injury, or disease and characterized by any of various cognitive deficiencies, including impaired learning, social, and vocational ability. Also called mental deficiency .

It is understood that a person with Down syndrome and mosaic Down syndrome can have a degree of mental retardation. However, this word has become, as the American Heritage Dictionary pointed out, an Offensive Word.

Instead of using the word to refer to cognitive deficiencies this word became a word to offend someone or indicate that they had subnormal intelligence when they did not. Such as, “You are a retard”, or to relate to something that the person didn’t like. Such as, “These shoes are retarded”

When this word became a word to offend; the word lost its real meaning of deficiencies to describe a person’s delays. And, because of this change the word is now considered offensive.

The “R” word campaign has been organized to stop the use of this word all together. Their site states: “The “R” Word Campaign is a grass roots effort to educate and inform the public that the use of the word “retard” or “retarded” to mean a bad thing is wrong. Not only because it perpetuates prejudice and discrimination towards people with disabilities, but simply because when its used in an ugly way it hurts individuals and families of those with disabilities.”

When this word is used, especially in a classroom setting, not only does it offend those who have disabilities, it also opens the door for bullying. When children are allowed to openly use this word, they will eventually use it in a way to bully other children. Also, by allowing children to use this word or adults using the word around children, this teaches children (and adults) to be insensitive to those around them.

In 2007, IMDSA had a wonderful opportunity from “For Better or For Worse” cartoonist Lynn Johnston. Mrs. Johnston began a character “Shannon” in her strip based on her niece, Stephanie, who was born with a Cleft Pallet. One of her strips focused on the word Retarded and how that made Stephanie/Shannon feel. Lynn Johnston was wonderfully generous to IMDSA and donated 10 of her personally autographed lithographs to IMDSA to help us spread the word and raise awareness about how hurtful the “r” word can be.

By reading this, I hope that you can better understand why it is so important to take this word out of your vocabulary!

My biggest pet peeve in the world is to hear someone talk who does not use People First Language. When someone says “He is Down syndrome” it is like fingernails on a chalkboard for me! It grates on my nerves probably more than it does for most people, but it is just improper and if anything offending to the individual.

Years ago when we first began IMDSA, I wrote a paper for our information packet that our members receive with their membership that talks about People First Language. In this paper, I make the point that if a person has high blood pressure you wouldn’t say “She is high blood pressure” That sounds silly!

So, in the case of Down syndrome or any other kind of disability, you shouldn’t say “He is Down syndrome” or “The Down syndrome person”

Down syndrome is what they have. NOT who they are!

So, if you do this, please try to remember that people with Down syndrome are PEOPLE FIRST!

Within IMDSA’s support group, we have a growing number of families who are concerned about their child’s speech. We are seeing a difference in the speech problems associated with Down syndrome.

I remember when Tim was first diagnosed; it was because of his speech delay that we discovered he had mosaic Down syndrome. At that time, I was told it was typical for people with Down syndrome to leave off ending sounds on their words. Tim did this, but he also had a very limited vocabulary for his age and also did not attempt to put words together for sentences.

The research we are working on right now, shows us that children with mosaic Down syndrome are saying their first words a few months later than those with Down syndrome.

However, we are also seeing a growing trend in something similar to Apraxia, but isn’t quite Apraxia.

When children have Apraxia they do not speak. They have trouble forming words and without therapy are non-verbal.

However, the children with mosaic Down syndrome who are exhibiting this special speech problem begin with words! They have words and are using them. Then, all of the sudden they stop speaking. They drop all of their words and then slowly- - very slowly- - with therapy, they get their words back.

So, my question for today is, how many of your children are facing this problem and if they are, do they have Down syndrome or mosaic Down syndrome?

Please leave a comment and let everyone know about your child’s speech problems and what you are doing to help them!

When Tim was first diagnosed with mosaic Down syndrome, he was 2 1/2 yrs old. Immediately we were placed with an Early Intervention place that provided him with Speech and Occupational Therapy. (He didn’t need Physical Therapy)

Once a week, he and I went to this place that offered fun and colorful toys with lots of new friends! As the children sat at a table the Speech and Occupational Therapists would give the children clay, or bubbles or other fun objects to play with and while they were playing with these objects they would direct the parents on how to interact with their children to enhance their speech and motor skills.

This was a great class that both Tim and I looked forward to attending each week. Not only did we both get to interact with others, I was able to work with Tim on a daily basis at home because I learned hands on at this class.

Unfortunately, therapy isn’t what it used to be. Parents don’t seem to be near as involved as we were back then and the therapy isn’t integrated into their child’s daily life. I never “did” speech therapy or occupational therapy. It was part of our playing, eating, and anything else we did throughout the day.

Another thing I have a real hard time understanding is why parents are having to fight to get the services their children need. IMDSA’s Fundraising Officer and Conference Coordinator, Brandy Hellard has two beautiful 17 month old twin girls. Alex and Adde. Adde has mosaic Down syndrome. Although Adde is delayed in her fine motor skills, she still is not receiving Occupational Therapy. Brandy is trying to get through the right channels to make this happen, but in the mean time, Adde is the one who is having to suffer from the lack of services.

I speak with families on a daily basis who are struggling with the same issues of getting services for their children. In many instances, the therapists have the “wait and see” attitude, and I think that is not the right approach. I believe that if the child gets services from the beginning then you are heading off any delays that might come up and getting a head start on helping those delays.

I would be really interested in knowing what others do to get the services their child needs. Please leave a comment, so you can help others who are struggling to get those much needed services for their child!

It is amazing how things for IMDSA begin to just flow and continue to move forward so rapidly that we sometimes don’t have time to blink!

Last month, one of our members, Becky, wanted for us to work with a temporary tattoo company who makes tattoos for children. These tattoos allow you to write information on them and if the child gets lost, the “finder” can return the child.

It was a simple request…. Or at least it seemed to be….

In order to make these tattoos, we needed to make an awareness ribbon that would be specific to mosaic Down syndrome. This is something that we had been talking about for quite a while, but never really had the time or know-how to do it.

So, we ask another member, Judie,  if she could make the ribbon for us. Judie and her granddaughter had made our Genes Day logo back at the beginning of the year and everyone loved it so much that we wanted to incorporate that design with our ribbon.

With a lot of hard work and some extra learning on graphic design Judie and her granddaughter, Therese, were able to make us a wonderful awareness ribbon that represented mosaic Down syndrome and IMDSA.

We were thrilled! The ribbon was beautiful and represented all of our colors of IMDSA! It represents DNA and has the “mosaic” pattern that we were looking for!

Now that we had our ribbon, I decided that we could use it in our new logo design. We have been wanting to change our logo for some time now, but have never found something that quite fit for us. So, I worked for days trying to learn all about graphic design (I am not as computer savvy as I would like to be) and finally I came to something that I was happy with. I sent it to our Board of Directors and they all agreed that this was the logo for us!

Now that we had our new logo that meant that we had to change all of our letterheads and our info packets. In the process of all of these changes, we decided to update our family brochure with some slight information changes along with our new logo.

Now, that we had our new logo we decided to make a new website since these past seven years we have been .com and we wanted to get a .org. And, with that new site we decided to change up the look of our site.

IMDSA’s web designer/secretary, Lisa, lives in Australia. I live in America. There is a big time difference between the two of us. So, in order for us to work together to make changes to the site, we each had to stay up well past midnight for several days in a row.

Finally, this morning around 5am my time Lisa and I were able to get our web site up and running!!

WWW.IMDSA.ORG

We are very excited to have our new site and our new look!

Of course, now that our website address has changed, Judie and her granddaughter will have to change the awareness ribbon to imdsa.org instead of imdsa.com! So, we are back to the beginning of why all this began in the first place….

WE HAVE TO MAKE TATTOOS!!!

 Thanks a lot Becky!  

Your request wasn’t as simple as you first thought!

My husband Glenn and I are probably a rare breed. We are blissfully happy in our marriage and rarely do we disagree with one another. However, when those moments do arise where we do not agree with one another, we never raise our voices are spat unkind words. We love each other and I have a hard time understanding why other couples tend to yell and scream at one another or say hurtful things that they don’t really mean just because they have had a disagreement.

Why are we this way?

Mainly it is because of our kids!

Children need to know that the parents are in control of the situation, no matter what the situation is. And, when they see their parents yelling and saying mean things to one another, they get very confused and can see that their parents have lost control!

As parents, we teach our children to say kind things to their friends and not yell and scream and throw fits. However, when the parents have a disagreement, they are doing exactly what they have taught their child not to do!

Glenn and I do, on occasion, disagree. When these disagreements take place, we go to our bedroom and close the door and talk about it. Yes, we are mad! But the reason we are mad usually is because we want the other to see it our way. We talk quietly…sometimes through clenched teeth, but we do not raise our voices at one another.

Another “Golden Rule” for Glenn and I is if one of us disagrees with the way the other has parented one of our boys we do NOT discuss it in front of our children! We feel as though if we contradicted one another in front of the boys, then the boys would play us against each other. Also, they would loose respect for the parent that was contradicted. They don’t need to know that we disagreed with the parenting. And, if we did, we would discuss it away from them and come to a compromise.

Finally, because our boys never see us argue, we let them know that there are times that we do disagree with one another. We don’t want them to grow up thinking that everything is wonderful and no one ever disagrees! Because, when they get married they would be very surprised! But, we are instilling in them that you should hold the utmost respect for the one you claim to love for eternity and you should never intentionally hurt the ones you love!

I am officially, once again, the parent of a preteen! I have gone through these fantastically, fun years more than once, but each time I find that things are completely different. It could be that because my boy’s ages span over 14 years things tend to change with each generation.

Not one of them every experienced the “girls have cooties” moment in their lives, so I have always had the issues of girlfriends from the moment they were old enough to know a girl!

However, I am finding that with my youngest son, Garrett, things have progressed much quicker than they did for Arron who is my eldest.

At 12 yrs old, Arron was rarely on the telephone and girls rarely called because it was impolite for a girl to call a boy.

With Garrett, I find that things are completely different, however I try to stick by my main rules that I feel are important. And, I try not to give too many rules because I think if a preteen has too many rules, then they wont take the ones that are very important seriously.

Rule # 1: NO talking on the phone after 9:00pm

Garrett feels as though this is cruel and unusual punishment and is probably considering calling child protective services on me. My main problem with this is although he tells his girlfriend he can not talk after 9:00pm she has a hard time retaining information apparently, because this week his cell phone began singing loudly at 1:30am!

She wasn’t calling….she was texting….. 

Kids are quick! I said he couldn’t talk after 9:00pm! 

And the text was “What are you doing?” Of course…thankfully, he was sleeping! Where she should have been at the hour!

The next day I revised the rule to: No communication… of any form… what so ever…after 9:00pm.

Rule # 2: No running all around town

There are several kids Garrett’s age and younger who have the run of the town. Our town is very small (only about 2 miles long) however, I feel as though kids should not be allowed to “rat the streets” (as my mother used to call it)

Garrett is trying to push this issue just a little bit, but not much.

I know that he sees his friends hanging out at Dairy Queen, but I just don’t think a 12 yr old should have that little of supervision. So, we have compromised. I will allow him to get an ice cream at Dairy Queen, but he can not stay there, he has to come home.

The one thing that I appreciated the most growing up is that my parents gave me goals to look forward to.

I try my best to instill that in my children. Such as: when you are 16 you can go on a date.

I have told Garrett that when he is 13 he could kiss a girl on the cheek. (I had set this goal a couple of years ago when he continental asked me how old he could be before he kissed a girl)

Now, we are less than 12 months away from the big 1-3 and he says he can’t wait! I asked him if he was just going to run down the street on his 13th birthday and kiss the first girl that he meets.

He, of course, said YES! But somehow, knowing Garrett, I doubt that will happen.

I am hoping that with my final run of preteen and teen years, things wont be near as rough as my first run! I have learned a lot over the years, and unfortunately, Arron was my guinea pig for the first run!

Thankfully, with all of my boys, we have a very open communication. My boys know that no matter what the issue is, they can always come to me or their dad (sometimes you can’t talk about real stuff with moms) and no matter what we will give them the information we feel is best for them at that time.

We respect them and they respect us.

We live by the Golden Rule: Treat others as you wish to be treated

For us—It works!