Today is Wold Down Syndrome Day!!!!

March 21st......3- 21 (ie three 21st chromosomes) what causes Down Syndrome.

Down syndrome
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Down syndrome Classification and external resources

From Wikipedia........ http://en.wikipedia.org/wiki/Down_syndrome

Down syndrome, Down's syndrome, or trisomy 21 is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome.

It is named after John Langdon Down, the British doctor who described the syndrome in 1866. The disorder was identified as a chromosome 21 trisomy by Jérôme Lejeune in 1959.

The condition is characterized by a combination of major and minor differences in structure. Often Down syndrome is associated with some impairment of cognitive ability and physical growth as well as facial appearance. Down syndrome in a baby can be identified with amniocentesis during pregnancy or at birth.

Individuals with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate developmental disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although these statistics are heavily influenced by the age of the mother. Other factors may also play a role.

Many of the common physical features of Down syndrome also appear in people with a standard set of chromosomes. They may include a single transverse palmar crease (a single instead of a double crease across one or both palms, also called the Simian crease), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, poor muscle tone, a larger than normal space between the big and second toes, and protruding tongue. Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life.[1]

This is one of the nicer descriptions of T-21 (new abbreviation) uses the appropriate new terminology, cognitive disability versus retardation...... still lists all the horrible things that could be wrong (again I don't disagree with those)..... in fact I think my kiddos have some if not most of those things.

But it doesn't mention any of the positive, fun & somewhat irreverent things Eric & I have gotten to experience......

• fierce love that does not matter what is on TV or we are having for dinner or how much money we mad or didn't make that day


• an understanding that God does make "mistakes" though my children are not one of them (I am thinking TICKS...... feed the birds something else)
  
  
• what unconditional love really is.....parents of typical children (which I know have 2 1/2.....decision still out on Emerson!) get some of this but my other five bring me so much and I found I have a lot more for them


• how happy they have made my life with new friends, lots of things to do (I swear I have my own parking spot at the hospital & doctor's office) and occasionally I do feel like I went to medical school


• I have learned about prejudice too...... didn't have a lot of experience with that before..... but people are either warm and accepting of my children or they are hateful....... can't look at them or make rude comments....... that is the hardest thing..... but there are lots more good ones than bad
• how to have a lot of fun doing normal things....like eating french fries or brushing teeth or sweeping the floor or doing laundry
• that bouncing can be a whole family activity
• that it is physically impossible for all of to go somewhere and all come home in exactly the same clothes

So here are a few photos of my kids........ doing what they do best..... being kids

HAPPY WORLD DOWN SYNDROME AWARENESS DAY!!!!

Making Fun of People I Love

Here is a copy of the letter I sent our President this evening...... there are lots of other things I would like to say....... but I tried to keep it on point and not as rambling as I usually am.

Dear Mr. President Barack Obama,

I will likely be one of thousands (I wish millions) of letters you get regarding your comments about your bowling score last night on the Jay Leno Show.

I was proud to vote for you this past November. I was even prouder listening to your inauguration speech in January. I have watched you with your wife and children on TV, in the print media and I have fallen in love with your family and all you represent in America. But last night you not only made me angry. You set a horrible example for your children as well as other people and their children. You inadvetantly implied that making fun of the cognitively and physically disabled is allowable.

I am a very proud mother of eight children. I have five beautiful ones that we adopted with Down syndrome, as well as three biological children. All of my adopted little ones were adopted from the US foster care system. They represent several races and a lot of different abilities!

Your insensitive joke in front of millions of Americans implies that it is “ok” to make fun of this population. Most times I ignore or choose not to hear these harsh words (like retard, or short bus, or the Special Olympics) and other joking comments my friends, co workers, professionals and other people make in my presence or in the presence of my children. As long as these people do not do so with the intent to really harm my children or purposefully make the joke about them.

How can I do this…… well I chalk it up to ignorance and small world education and very little thought given to how this and other words really can affect people. However, you are brilliant man! You are not a sophomoric college student or a “Ben Stiller “type of character in a movie……. This is why I am ANGRY! MAD! HORRIFIED and SAD!

When you, Hollywood actors / TV personalities and other educated people make little comments (like last nights) even with no amount of disparaging intended toward my children, it shows all others it is OK!

Believe it or not, my biological five year old knows that people make fun of her because of her siblings, she doesn’t understand why she just cries and wants to understand what is wrong. And with your comment last night you gave them permission to continue to do this…. Because they heard a smart, articulate man…… our current leader….. say this so it is ok.

You spoke these words on April 11th 2008.
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities." -- Barack Obama.

I voted for you “not because you were the lesser of two” but because you were above what I have seen from most politicians in my lifetime. You had an agenda and given thought to the plight of the disabled. You do not see health care access as a privilege, your sense of humor is actually really amazing (most times) and you believe in really helping and changing America in a direction I feel we need to go~! (and we both have a daughter named Maliah….though I spell it right & a great Rainbow in our yard)

So please do the things you promised and show my children you care by reforming health care, making their education the best available, helping elevate poverty, and leading the USA in a better direction…… and remember the example you set…… and try not make a little girl cry because someone repeats you joke in front of her and she realizes that you (and the person repeating it) were making fun of her family!


Mom of Eight in Eureka, MO

Jane Leahy-Smith

Do I wish for a personal apology.....yes.......

Do I want him and his wife to help with the Special Olympic event on the 31st of the month for making America aware of how hurtful the word "RETARDED" or any variant is to some people.... would be a nice way to make up to a bunch of people who would all likely beat him at bowling (I know Colin can!!!!) Maybe he should get some bumpers.

Do I want a congressional bill making YOU TUBE to remove the horrible comments and videos some people post about adults and children with developmental disabilities....that would be nice

I am realistic....so I will settle for ...... hmmm....ok ......I just want him to fix it so my kids can grow up and not have to worry about having to not have a job so they can have health care!

We are coming home!!!!!

We are coming home tomorrow............ it was hoped for today, but we had a few snags getting the home health set up! (always the paperwork)

So we are going home on Tuesday. I am promising to run out of the NICU as soon as they sign all my papers and not trip!!!! Eric even took the day off and all the kids were excited cause they were home and could come (OK I am sure Lynn and Angie were excited to come too).... but they will go to school and I will send him to work to not jinx it!

But I will get a chance to say goodbye to our favorite nurses and secretary (they come in again on Tuesday) and hopefully hug a few more parents....... I have watched so many people leave ..... I know they are counting the days too. My hall mate has been here for 6 months~ You would have had to lock me up if we had been here that long! But he is going home tomorrow too!

Get ready for photo overload tomorrow!

The Tater Tot and the Valentine

I had a horrible start to my Valentines Day this morning. I came to the hospital Friday night about 9:30 pm after a fun afternoon with the kids, Colin's valentine party and the ice cream to celebrate Melea's birthday and about two hours of six of us pigging out on all the Valentine's candy. So I was tired when I got here........

Emerson had a new nurse who fed him yesterday and he broke his streak of no heart rate drops!!!!! I was crying...... I had been so excited when they said he was going to get to go home after we waited four days with no drops...... well we had made almost 72 hours and I had started seeing the light at the end of the tunnel.

Well then he had two with me when we were breast feeding and another when he was sucking his finger. He can not a;ways process the sucking, breathing, eating and "farting" thing at one time. You have to watch him cause one of them needs to stop (ironically my son chooses to stop breathing and then drop his heart rate dangerously low and turn purple!)

So hear I sat in the parents lounge waiting for my breakfast to come up pouting and crying...... I was frustrated cause we weren't going home, I was frustrated cause we were going on seven weeks here, I was frustrated cause I just ordered the same breakfast I have eaten for the last 30+ days and I just wanted hash brown...... but they are only on the kids menu, no the parents.....

So I am just looking like an idiot, and up comes my tray...... I sign for it and still am teary eyed (Like I can make him quit having these drops or make them let me take him home.....and I have been considering stealing / kidnapping him when I come in so late at night and am just sitting here) well on my tray are tater tots! OK they are not hash browns, but they are closer than I have ever gotten.

It was a mistake, but it made me stop and realize that maybe I can't have everything the way I want it....... but at least I can get something..... and I smile a little. I then move my milk and under it is a valentine. My kids remembered and all made me things, but Eric has had no time to get me anything and we usually don't go out..... but I am wanting someone to tell me how special I am (not cause of my kids or the time I put in) but because they really like me! Well I get a sponge bob valentine from a little child named Dylan!

I have grown to love sponge bob over the last year and it is depicting my favorite episode...... where sponge bob and Patrick are playing in a box! They use their imagination and making believe and driving Squidward nuts!!!!! This just made me chuckle.... cause I love this episode and I know that their are some new episodes premiering on Monday and I actually am planning on watching them! (IRONIC ISN'T it!!!!!)

So this little mistake of the tater tots and piece of paper from a "Dylan" who was probably forced to write this in school made a very say and depressed lady realize that Monday may not be our dismissal day but Tuesday could be!

(Doctors said he is still going home and not to cry later...... it will just be when home health gets everything set up!!!!)

Valentines & Friendship Parties!

Well it has been party time at school lately! Melea & Adrian's were Thursday. I helped in the resource room and their party also on Thursday and Colin & Devon's were Friday.

Party days are always a depressing time for me. I wish I could go into them more upbeat, and excited but I always get to be smacked in the face that there is something different about my "chromosomally enhanced" children now when I attend their parties in their integrated rooms than I was we were in preschool or just go to their resource room celebrations.

It was one of the reasons I was so looking forward to Adrian going to school this year! It is nice that I can go and see her interacting and participating and not hiding under the table or trying to run away.

And valentines (oh our school calls them friendship parties) Day celebrations are even more difficult...... cause they have required the signing of valentines, and of course each class has a different rule so Melea and Adrian are just supposed to put their name on them.....no other stuff, but Adrian fights me because she wants to give specific people specific ones. Melea can't really write all her name in such a small space and it takes three nights to get all 22 of hers signed. Devon only needs four, but he just scribbles so Miss Lynn writes his name and lets him scribble all over them, same for Eliza and Miranda.

However this year Colin's teacher wants them to put the other children's name on them...... what a nightmare....time consuming thing. Thank heaven for Miss Lynn and her helping me cause with all the hospital visits I just didn't have time to give Colin the time he deserved to complete this task (It took 3+ hours to get 17 valentines written on) with their name and his and of course he had to stop and draw one of his famous pictures on each one!

So Valentines day requires a lot of work from mom (Gosh I love Halloween....show up and watch them eat candy!) a head of time. Dad did try.... but he just doesn't get it, so thank heave for Miss Lynn!

Well I managed to make it to Adrian's party on time (I was waiting for a consult with the doctor) and it was fun, but I had to run back and forth between the preschool room and hers (thank heavens they are next to each other).....

Afterwards I take Adrian out to lunch for our special date. She loves Mexican and so off we went to our favorite Mexican place. She was so excited to go there and to eat lunch! I just love watching her enthusiasm! She is just so happy and excited and usually fun to spend time with!

We run back to school, I pump in the parking lot...making two bottles for Emerson. Adrian and I listen to the Wiggles while waiting! Then I go to our next party. In the resource room for Colin and Melea. I bring the crafts and the candy and the food. The kids were wonderful! All four of the little ones in the room (ironically two of them ARE NOT mine), we made candy necklaces, made a photo collage for our parents, while working on scissor skills and other fine motor craft skills and then the funnest activity was making the "Fruit and cheese kabob's" and eating them!

I think they all enjoyed this activity and we didn't leave them on a sugar high for their afternoon classes.

Melea's party was in the late afternoon and for a change..... she was not the worst behaved child in the class. She actually wanted to participate (I think it was the promise of ice cream sundaes at the end).

Colin & Devon's parties were Friday!

Colin's party was actually pretty fun. Maybe because his room parents don't plan too many activities, maybe cause it doesn't have the "one upmanship" that the other room parties seem to have! I really am not sure what makes it different, cause Colin is so much below his typical peers in so many areas (though these children all seem to love having him there) but this class he seems to really enjoy being in and sharing things with them when I watch him.

Colin makes me a necklace (which I am still wearing) after reading a wonderful story as a group and then they get a few cookies and capri sun. Simple and sweet.....it was just a special way to finish off what usually have been things that I dread going too.

Devon's school just had a small celebration and parents were not invited, but I know he enjoyed it cause I asked him how it went and he smiled and laid down on the floor and made his happy noise! (or maybe he was just happy to see me) It just made me smile and realize how loved I am and how much my kids need me!

We passed the Car Seat Test!!!!!

Eric and I have been busy getting the house ready (if cleaning three to five days before anything.... means it will still be clean when he comes home LOL) ; We have taken the requisite CPR & First aide classes; watched all the videos and I am supposed to learn how to take care of a baby on Friday (I guess previous experience and having seven counts for little!)

But we passed the last hurdle this morning (other than the obvious of getting the orders and running out the door!)...... we sat up in our car seat for two hours! No saturation drops and no heart rate issues! Yeah for Emerson!!!!!

But of course I think I deserve a round of applause, I bought the car seat, made dad install it in the car (so it could be inspected) then I unhooked it from the van, and carried it with all my "crap" and my computer into the hospital got it to the NICU (it weighs 29 lbs and is dead weight) at 4 am! I also got it back to the car later on my way to the Melea and Adrian's valentine parties.

S0 I think mom deserves a little congratulations too!

Special Olympic Bowling Field Trip

I went with Colin & Melea on their field trip yesterday. Well I actually met them their after going to the NICU at 3 am to visit Emerson and spending time with him till 9:30 am. It is so hard, because I do love riding the bus..... but Melea was so excited to see me.

Colin kept signing "Mommy light" and "Mommy sleep" ..... I think he was trying to say that mommy needs to sleep and what was I doing out in the light.... I have only been seeing them in the dark (after 5 pm each day till they go to bed) and then back to the hospital.

So Melea was so happy to see me, Colin just kissed me and helped his teacher put on his shoes and went on down to the other end of the bowling alley..... no come with me or I don't want to leave my mom......

He is growing up so much....... However Melea just wants me to stay with her and stand next to her or let her sit on my lap. She is not interested in bowling or her teacher........ just hugging and loving mom (boy I did sort of need that!!!)

Well her super aide. Mrs R..... gets her down to the alley and Meleas does awesome. She is still under seven (just for a few more days) therefore she gets to use bumpers. Melea bowled a 75 and and 89. She got two strikes and won a participation ribbon. She was so excited and wore it all night long and wanted it on her PJ's when we changed at home later that evening!

Colin did super also, though I only managed to get down there a few times to see him. Though he bowled a strike every time I was able to watch...... four in the two games. He still gets to use a ramp (if he wants too) but no more bumpers!!!!!

Colin won a silver medal for the day for his age bracket! He was not at first that interested in the medal but after Melea wanted it ..... he got very proud and very excited. He wore it home after school on the bus and let each of his siblings and mom try it on! It was really exciting to see how proud he was and how he tried to tell Miss Lynn and daddy what he did to win the medal (and it was really cool cause it was made out of metal and really nice!!!!) Adrian was a little jealous!