Sunday, May 17, 2009
We had so much fun playing games, bouncing and jumping in the bounce houses, eating of course and meeting some old friends and making a few new ones. Though Devon and Miranda had the best time dancing.
We had a few tense moments. I was really worried about Emerson for a while we had several episodes of the monitor going off and his eyes getting a little dusky blue!
I think the best thing about this is getting to see a lot of the individuals with Down Syndrome, so many different stages, abilities and basically just a cool mixture of people.
It also helped cause Adrian has been asking a lot of questions lately.
This morning she informed me.....that she, Jordan and Emerson did not have down syndrome cause they all came from my tummy. True yes..... but not what I was expecting...... I thought she would follow it up with some profound statement.... but no, she then told me all adopted kid had down syndrome..... so the picnic did at least give Adrian and I chance to play...... who has DS and who doesn't and why (or how she knew).
I know this seems weird.... but she has been having a few issues at school and a lot of issues at home and is a lot more confused about what is going on with the "chromsomally" enhanced ones and always wants to understand why we do not get "the good parking space" when it is just her and me!
It is a wondrous thing that comes out of her mouth....usually before she inserts her foot!
Wednesday, May 13, 2009
STOP Here...... or
LONG STORY...... I cried today.....tears that only a "special" mom can have. I cried today because I was proud, happy, sad, amazed, joyful, and just plain beaming with pride when I watched them......both my beautiful.....Adrian and Melea.....as they graduated from kindergarten this afternoon.
Today started like usual.....OK sort of. My friends came and helped me get the kids ready for school .......still issues with the kids and Emerson all needing me .....(when will I learn how to nurse a kiddo.....carry his heart monitors....bathe the others and wait for the bus at the same time......thank heaven for friends!).
Differences included the fact that Adrian had laid out her clothes ....three days early! She picked out my clothes.....Emerson's & Jordan's outfits.....made sure she had invited every person she met in the last week......called her grandma and reminded her dad...about 20 times! She had been singing all the songs for me for over two weeks.....and like the wonderful sister that she is made sure Melea practiced many many times too.
I fight ...as usual....to get Melea to let me do her hair, make sure she gets her teeth brushed.... try to make sure she doesn't hug Emerson too hard and a little argument....doesn't want to practice her songs.....just wants to look in the mirror at her "bottom" oh does that fascinate her!
Adrian got up early.....in the shower before Tammy & Angie got her. Adrian had me do her hair....put in her special bows.....wear perfume......she was so excited! Last thing she tells me.....on her way out the door is...."Mom, I love you so much.....but please make sure your armpits don't stink!"
"OK".....I reply....pretty much taken a back..... I forgot to notice she had no shoes on. Of
course Adrian was her usual creative self and decided that her beautiful burgundy suede boots would look so much better than her her pink dress shoes. (Angie did try to get her to wear the matching ones.... but Princess Grumpy was adamant about these....and I didn't notice till she marched in...Oh well!)
I actually was so surprised at her comment....I spend the morning questioning Dad, all the kid wranglers, Grandma and Jordan if I had forgotten deodorant in the last few weeks.! It really was bothering me.....I knew Adrian had been frustrated cause I have been wearing my painting /work outside in the yard clothes to Wal-Mart and Home Depot the last few times! SO I SHOWERED AGAIN!!!!!
I was amazed thinking back to all the IEP's, all the planning, the times I was sure she wouldn't walk, or wondered if the the failure to thrive was my fault, all the speech therapy sessions where she would not make a sound..... but that smile....I see her beautiful smile. I can hear her! Tears of amazement start to flow! She did it...though it was her way.....not the way I planned, not the way her teachers always wanted either. Why is this amazing...... well it is just like the rest of them.
Friday, May 1, 2009
So here are some shots from the year of all we have done at school with the kids with Daddy back filling with babysitting and working hard!
Wednesday, April 29, 2009
Saturday, April 25, 2009
I watch prices I watch numbers / counts on boxes...... I have eight mouths to feed and butts to diaper! I NOTICE and I am tired of it! Quit keeping the packages the same size and putting in less...... from cereal (yeah I know you just matched General Mills and others). I have put up with the disappearing diapers for a while and even the missing 48 wipes (8 from every package for about 2-3 weeks down from 80 to 72 then a huge new end cap saying more...we are giving you more now!
But yesterday you really made me mad! I will call again today when I finish this...... I am madder than when you got rid of the green (lime) flavored yogurt for 3 months when you put more of the ridiculously priced GoGurt and other espensive kid marketed brands! Madder than when you quit carrying equate bar soap!
You took a whole package of wipes out of the six pack in the parents choice! At first I just thought I got a defective package...... it shook....... I looked at the package....same size...... you didn't even try to hid it this time...... It just said FIVE.....440 wipes.......not the usual 6 pack.
There was an empty space.... someone else will notice......they have too..... it can't just be me.
OK it can Eric just opened it....I had to buy it.....we were out..... I guess that is how you get away with it...... you are our only choices if I need to keep our costs as low as they can go! But I a, noticing and keeping track and angry.......angry about the fact that this pack is missing.....angry about the fact in several weeks it "will suddenly" reappear as a gimmick to make you think you care about out needs and the fact that everyone is penny pinching.......and YOU ARE TRYING TO HELP US OUT! But I will remember.......
I wish I could boycott you..... I tried mad it 2 weeks and 5 days.....19 days...... oh yeah it did nothing in their bottom line.....made me completely sure I hated the generic diapers at Walgre&&^% and ended up costing me more money on just about everything! I am sure that you didn't even notice a dent in your bottom line...... (note I spend about $250 each week on food and other household items there).....but to me it is a huge amount.
Wal-M#$%@ was the second corporate brand my kids recognized (McDonald's being first).......My son Jordan & Adrian's could say it before Grandma and most of their siblings names.......it has become the generic term for "store" at our house like xerox...... but notice.... I am watching and I know and I am mad.
Raise the prices, but quite trying to make me think you are doing me a favor by giving me 8 more wipes or 2 more diapers or locating the missing 2 oz of generic Cheerios! The used to be there.....you made money when you took them away,,,,,,,,, GIVE THEM BACK!
Thursday, April 23, 2009
Today Devon got to go to the Special Olympic Track Meet. (Next week is Colin & Melea's) It was so much fun to get to spend the morning with him.....though I think the "spirits" were conspiring against me for the first 4 hours of my morning.......
- why did I ever let the kids (Colin & Adrian now do every day....some days so does Melea) start taking showers before me....... I WANT AN INSTANT HOT WATER HEATER!
- someone stole the shoes I wanted to wear (after I took the time to shave my legs)
- afternoon helper called in sick so I am panicked that I can't go ....but morning helper says she can stay till at least 2 pm! THANK HEAVENS
- Melea tries to play sick till she realizes that I am taking Emerson with me..... so the plan of staying home to play with the baby....not working as she planned.... so she runs off to school to torment the staff there!
- Grandma still in hospital and I am worried about her....
- I finally get there.....they make us park at another school across a street I would not have crossed with "normal" children....let alone Devon....thank heaven I was running so late.....I sent him on the bus!
- There was also a huge huge huge set of steps and I could not carry the stroller, the diaper bag, Emerson's monitors, camera , our lunch up those stairs.....and I forgot I had Emerson too!
- Jordan broke my drip coffee pot last week, and out of instant coffee too....do they make IV coffee? URGH!!!!!!!!
- I really do like going to Special Olympic events.....it is so nice to see so many happy faces and smiles....it can and always cheers me up....worked really well after this morning and my lack of coffee!
- I finally found Devon and met his helper for the day. Her name was Katie.....she seemed nice and Devon was holding her hand and smiling (though he would do this with Satan and any person....no ability to distinguish) But she seemed to have the energy that Devon needs .
Most people think I am neurotic about going to all these event.....but I taught High school for a while and it is a 50 /50 chance at getting a "not so interested" helper.......and all my kids run! so I get worried....OK down right scared!
But no problem with our helper today......she was attentive to me, Devon and Devon's school staff as they explained his needs and issues (OK I was a little worried when i first saw her...and no staff....but boy did she do great!)
We got to play games.....I swear all the clubs at this high school participated....at least 20 carnival games.....Devon brought home six bubble containers and all kids of carnival treasures (OK junk that Adrian can try to feed Emerson tomorrow......). But it was fun to watch Devon attempt to play the games and to see him brighten up when Melea and Adrian and he were going through the bag when he got home.
Devon gets to compete in "challenges" to build his skills....like hopping, and jumping, and throwing tennis balls and running to someone (his new pretty friend Katie). It might seem like a waste of time to some people....but sometimes just watching your son do a little bit with a stranger ....it is amazing.
To stand back and see how that smile can bright the world. To spend a minute not panicked about hospital bills or balancing a check book or wondering about how or when the TV will have some "good news" about the economy. That is what I got this morning!
Three and half hours of time with Devon (Emerson was along for the ride....and a small red nose....sunscreen must have rubbed off). We played we hugged each other, a big red dog, played clap clap with Spiderman & Wolverine, were timid with Captian America and just hugged the heck out of the "Tiger".
We through some pom poms, blew bubbles, picked ducks & fish out of water, got matching tattoos, got covered in Peanut Butter & jelly and watched him drink a full carton of chocolate milk! Then we ran some, jumped some and threw some balls. We even crammed ourselves into a port-a-potty together for a diaper change! (Katie held Emerson....thanksso much!)
I want to thank all the kids and people that made this day special....the planning is not so easy to pull off an event like this! These young adults worked hard to put the special in "Speacial Olymipics"! From the girls dress up int heose hot costumes on the 80 degree day, to the ones helping me with parking (even if I grumbled)
I had a wonderful time. It was amazing! Devon is Devon.....I keep hoping for a miricle or breakthrough or something, but I spend most of the time thinking he is never going to change.
Do not take that as depressed as it sounds. I loved seeing all the smiles he gave to people today and all the hugs. I loved seeing how much he has grown this school year. And after spending the day with him today. I am sort of happy that he hasn't changed to much .....yet!
I think for him..... the world will always revolve around him and what "Devon "wants...... but today he wanted to share it with me & Katie and it sure was "totally awesome"!
ps- I am feeling quite old all of a sudden! and wondering why two grown adults with college degrees can't make microwave popcorn with out burning it!
Wednesday, April 1, 2009
Cause you know having eight kids including the new baby....making painting so easy! Let us not forget that Adrian wanted to help which then involved a lot of wet wipes and Mr. Clean Eraser's and carpet cleaner (she stepped in the pink paint and the tracked it everywhere!)
Adrian just loves bright colors and putting as many together as humanly possible! She is so bright and cheery and her clothing shows that so I let her paint that in her room too!
Saturday, March 21, 2009
From Wikipedia, the free encyclopedia
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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.
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.
- 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!!!!
Friday, March 20, 2009
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
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!
Monday, February 16, 2009
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!
Saturday, February 14, 2009
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!!!!)
Friday, February 13, 2009
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!
Thursday, February 12, 2009
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!
Wednesday, February 11, 2009
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!