ONLY IN THE MOVIES.....

Why is it the end of so many movies always turn out "HAPPY" Girl meets boy= DRAMA then all gets worked through and they kiss and make up = MOVIES.... LOL

Why can't it just be "NORMAL" I guess that would seem boring... not to me. In working to write a book I have learned very few books are even written today non fiction. I am amazed because I learn something from all the people I meet. I find human behavior REAL LIFE very interesting and so much for us to learn from.

So back to blogging... Not really sure where I left off, the past few days have been productive in getting to project that have been set aside for our travels. Conference summer 2010 it has been... I did get the bathroom sinks unclogged. GROUSE! I need I need hair traps for sure. and teach the kids the bathroom drain is not a penny bank... actually other then the cantence it was very simple to undo the U pip and reconnect after cleaning it all the yuck of flusing the drain clean.. CHECK that is done. Van battery is changed, extra wiring my son added has been removed :0( why oh why... well better that than something engine related. I have a few other items on the van that I am not capable of fixing so that is going in later, mower is in for a tune up and being returned to friends as this very nice man is mowing my lawns every Wed from here on out THANK YOU! That will be a real blessing and his Dad is coming to see if he can re-connect my sprinkler system if I go buy a new control box...again, my son decided the box needed moved after the initial install and since then it hasn't worked... :o( but better it is getting fixed and moving forward... I believe we are all well enough to have the air conditioning guy come to see if he can fix that, it is bloody hot in my house and the ceiling is now falling from being so wet so long... :o( I am sure some conversation about my duct work will come up.... Yep, that wonderful son of mine use to "run away" up to the attic which was hot so he used his pocket knife to cut holes in the duct so he could get some cool air... yep there is a positive, that son no longer lives in Florida.... :0) so we are making strides....

I am so ready for the heat to be gone....

I do not even care if it rains every afternoon if only the heat would BACK OFF for a bit... really not the heat as much as the humidity. I have not been in the pool much this summer here at home and it wares on me to be in the house too long but going out to play is brutal... and I have three kids who just HATE heat... Tressa can not regulate her own body temp so she is a health risk at times in the heat, Lucas being from Hungary still has no preference for play out in the heat and baby Emma who some how has come to believe she is a golden princess and nothing uncomfortable should pass present her in any given day... she is getting to be a real pill... She is trying hard to scream and fall out crying to stop therapy... but when I pick her up she stops instantly... so I sit her on my lap and she twists and turns and snuggles to fight doing any non preferred task... SORRY EMMA there was one or two before you..... We got your number girlfriend.

I am under the weather a bit today, coming back but forgot to eat yesterday, then went out and had a small slice of flatbread and forgot to eat today until I drank two large glasses of tea and had cramps in the worst way. Having surgery years ago I do not ever feel hungry, I have to bring myself to eat or I can go days and only drink. I usually feel weak or light headed then it hits me, when did you last eat something. If I forget to eat protein for days my hair will start to fall out...major sign I need to focus back on myself. That is usually only during high stress tomes and avoiding those is another focus of mine..

I have put in many many hours to the awareness walk the past few days and the responce is fantastic. Thank you all.

We have a new baby in Haiti in need of heart repair to live and again I am faced with 2010 where the medical profession does not feel they should grant a charity Heart surgery to a child with down syndorme dur to the QUALITY OF LIFE>.... It just send me to places of darkness to know this is the view of people today. Especially people who make hundreds of THOUSANDS of dollars from repairing baby's with Down syndrome all year being paid full rates... I am sickened once again... I must find a way to break through this mental image for charity heart surgery. A human is a human is a human... if they can live from a surgery my GOD is the only God and he assures me it is INCLUSION in his image of quality of life.

My van is on the road again, it had something to do with wiring. I am feeling good about that, next is the air conditioner so I do not have to have water running on my head from the ceiling... GROUSE!

I found a large black snake in my garage, Mandie saw a second one, they must have been calling this home for some time because they are HUGE for black racers, I am thankful they are eating the rats because we have not had a rat issue during these rains and usually rats come out of the canal areas up on the wires and into attacks where they cause all kinds of trouble...

I will post more pics soon, Activity time in our house, I need to supervise.

Arts and crafts day, making wrapping paper

More sewing, making patchwork bags

Getting back into the rountine, reading hour

Self serve Crystal lite

Emma is RSVP ing to the walk

Kaitlyn is practising for school, once 16 she can wear make-up

maybe not this much make- and minus the koolaid smile..LOL Keirsten is photographer... they are having great girl time.

BE INCLUDED... BE INVOLVED... BE INSPIRED!

VOLUNTEERS NEEDED


PODS Angels is a Down syndrome not for profit family support group supplying newborn packets to all the local hospitals free of charge, on line and in person support, mini conferences and supportive events with the annual Holiday party a huge success.
The walk has a registration fee per family or per person Early registration recommended.

Cape Coral’s newest neighborhood park is 3 acres and features a large pavilion with BBQ grill..., basketball courts, covered playground area, and perimeter pathway for walking, exercising, etc. Extensive landscaping, including the only remaining banyan tree in Cape Coral, makes this an excellent place to stop and enjoy the great outdoors.

Walk details:

Early T-shirt Pick-up
All pre-registered walkers may pick up their t-shirt on Saturday, October 16th from 10 am to 3 pm at the event site.
Register by September 15th and save $5! Plus be guaranteed a t-shirt.

DAY OF WALK
If you are pre-registered, go directly to registration to check-in and pick up your t-shirt.
If you are registering on event day, please bring your completed registration form and payment to the registration tent. T-shirts will be distributed on a first-come first-served basis as supplies last

Saturday, October 23, 2010 at Paul Sanborn Park, Cape Coral, Florida.
SW FL PODS Angels; Step Up 4 DOWN SYNDROME Walk is a wheel-friendly 1-mile pledge walk to increase public awareness and acceptance, and raise funds to support programs and services for people in our community with Down syndrome.

Whether you have Down syndrome, know someone who does or just want to show your support, come and join the Walk. Anyone can be a buddy! This is what it's all about! Meet your Buddy (person with Down syndrome) or team in front of the pavilion at 9:40 am for the opening ceremony, then walk.
During the walk, teams will be judged on spirit. So create motivational signs or banners with your Buddy or team name to show off during the walk. Spirit judges will be located in the park around the track to select the winning teams or Buddies. Return to the pavilion at 12:00 pm for the presentation of the 2010 Spirit Award winners.


Please join us so we can reach our goal for this year's walk – $10,000.00! Support the STEP UP 4 DOWN SYNDROME Walk – a special celebration of life, love, and the full potential of all within our community.


Event Details
8th Annual SW Florida Walk
Click Here for Event Details PDF
Location:
2310 SE 3rd Street
Cape Coral, Florida 33990 mapquest

Parking available at the Park

Day of Event Schedule:

Time Event
9:00 a.m. Registration and Pre-Walk activities
9:40 a.m. Opening Ceremonies
9:50 a.m. Warm-up
10:00 a.m. Walkers will head off onto course
11:00 a.m. to 1:00 p.m. Post Event Activities


Planned course:
Travel approximately one mile around park course. Our wheel-friendly course at the park is perfect for family and friends! Pre-Event and Post-Event activities will take place throughout the park.

(insert map)

Registration:
Registration is necessary! You can register as an individual, family or as part of a team that you can start yourself or join another. Register Here and feel free to contact the SW FL PODS Angels at 239-872-4778 if you have any questions or need assistance.

Entertainment:
Inflatables
mascott ??? costume
???
???
and much much more

Event Reminders:
The STEP UP 4 DOWN SYNDORME Walk will take place rain or shine! Sorry, no refunds will be given.
Registration Forms must be postmarked by October 07, 2010

Free activities for toddlers to teenagers including: carnival games, crafts, face painting, young athletes’ area, obstacle course, karaoke, a dance party and more. Food and beverage will also be available for purchase.
Dance Party 12:00 PM – 1:00 PM
Dance …Dance ….Dance…..Dance your shoes off in front of the stage or try your voice at karaoke. If dancing or singing is not your thing…sit back, relax and be prepared to be entertained.

Silent Auction and Raffles 11:00 PM - 12:30 PM
Silent auction and raffle items include team baskets of varying themes, tickets to shows and sporting events, memorabilia, baskets of cheer, and more. Raffle tickets are 1 for $2 or an arm's length for $10. Auctions and raffles close at 12:30pm. Winners will be posted at 12:45 and are welcome to pick up their prizes at that time.
Donations of silent auction items and raffle baskets are always welcome. Contact swflpodsangels@msn.com to donate.

Tressa is designing her own first day of school shirt

Making simple swimsuit cover ups from t-shirts

To no ones surprise Jordan has a lead foot.....speed sewing

Beginning sewing, learning to hand sew and threading a bobbin

OOOHHH PRINGLE KIDS, HOW DO YOU FEEL??

SCREAM ...............

OH PRINGLE KIDS. HOW DO YOU FEEL.............. sing songy very loud drawn out.

They (kids) respond:

QUICK loud and chanty like (from camp)


WE FEEL SOOOOO GOOD (long and drawn out)

OH WE FEEL SO GOOD (quick and loud)

OOOOhhh clap clap clap clap clap

OH LET'S EAT! (their arms bend tight fisted and arms back to their side like "I did it") This is instead of the ole dinner bell...LOL


I know I need to learn how to put video on the blog...

Today was a busy family day. We got off to a rocky start with the teen and texting... URG .... It is obvious when she can not wake up in the morning she has been up all night. I made her write an essay on how she can make changes to have a more healthy lifestyle. Her first one went something like this... If I wake up on time I get to go to my friends from noon until 9:30 pm each day...............LOL That page went to the recycle bin. NEXT! We got much closer to what I wanted to see so we are going to elaborate on it tomorrow and put it into a contract.. I am struggling with the amount of texting teens do, but a survey on facebook makes my situation more normal than not. Now it is getting balance. Teens need jobs and in this economy it is tough. It really isn't about money as much as time management, personal growth in all areas.. It is a shame the jobs the teens were getting are holding families together as main household income.

Once our day got underway we did picture games, the kids look at a picture and make up a story about the picture. I do not have to tell you who had the most exaggerated story to tell with all the drama emotions as if she really lived it. Yes, Tressa is the winner for story telling. We must have sang ABC's 50 times today. EMMA yes, Emma --come on you didn't think i was going to say sang it with us...I am good but I am not that good...LOL She did dance and hummm mimicking us so she was absorbing the song. She is saying approximations of words each day although if I was not experienced in it one would miss what she is doing because it is slight and not consistent. Therapy started a little later and lasted later into the night.

Join us for a mission trip to work in an orphanage 7/2011

GO to this link to begin the above is our logo

http://www.orphanage-outreach.org/estrella/team?id=NjQ3

Our team name is FIREFLIES we plan to fly into the DR and light up the lives of many children.

Travel dates are Saturday to Saturday July 16th 2011 to July 23rd 2011. We have a fundraising page to cut expenses for all the team members. Please pass the web link along so we can be prepared in advance with all the team members in place and funding completed.

Learn more about volunteering at the link above on their home page. SIGN UP we need team members

Therapy day..SEWING!!! yes they are sewing on a sewing machine

Today is our therapy day for all the children. We have so much going on, our friends from Orlando are in a rental home out on Sanibel for us to bop out and have beach time for the next two weeks or so... Yippeee, Tressa loves Chloe and their time together is precious. Bella is planning to join in on the weeks of fun as well, wonderful girl time... the others plan to join and locate shells the tide has brought in, big waves with Bonnie stirring up the gulf's base will land many treasures on the waters edge for treasure hunts. Sanibel has a museum of shells which offers education on the life of a shell with names of each shell how they eat and grow.. then we take those educational worksheet out to the waters edge and match what we learned to what we find. VERY FUN! not expensive either, entry is like $7.00 adult and $4.00 for kids. The video alone is worth the trip, thing you just never knew.. The kids love the little shops on Sanibel which have so many craft ideas to bring home and make. We love arts and craft times.

Today they all have most of their squares cut out (by hand), they will lay out their pattern to hand sew their appliques to the front square of their projects. Jordan has a car, Tressa a big red heart, Steven is doing a baseball cap and Kaitlyn is hand sewing hers a tube of lipstick, they all got to choose their own. Then sew the squares in a patchwork fashion which will be done on the machine and then the bag will be sewn together again via machine. This is so much fun. It is time consuming which is teaching the children the best projects take time to be done right. They were a little upset that the bag wasn't done the first session or even second.

I will take pictures today... we have pool time with another friend this morning before the thunderstorms roll in, and therapy begins. Keirsten is grooming to be a medwaiver caregiver for older people with disabilities living in their own appartments, this is her hands on time supervised...and the bonus is we all get to go swimming at their complex. Gotta run, swim suits staring at me...LOL

SUSHI took a back seat

We went for the traditional Nachos tonight so that we could skype and eat. We had the lap top on during Ayden's party so we could sing, eat cake and be there to watch him open presents. That and learn to roll sushi would have been too much.

We ordered our Disney on Ice tickets today. $10.00 a seat for September 17th night show, we are there. I plan to have a van load.

Mandie was here today, I did not sleep although I did rest. My van needs a new battery... so we are stay put for awhile. My list keeps growing.. I need to be sure it isn't more than the life of a battery.. I did jump this truck a couple weeks ago. Actually the day before we left for Disney. He said he was with the phone company I think, he talked to Mandie and he needed in my back yard. I hardly remember the whole day. They electric company needed in my back yard to cut branches to the house behind mines tree.. Some branches fell into my yard so they came over.. My yard is solid closed so to get to my back yard you have to come through the house. Then comcast came for the tree cutting event to check their lines and the phone company??? I do not know but this maroon truck wouldn't start at the end of the back yard event... so he asked me to jump his truck. I didn't want to but saying no isn't always my quality... I have two power boosters but neither work..why do I still have them?? Because I figure until a "professional " tells me they do not work I will hold on to them... like all the other items hanging around to get clarification to be thrown out. Ok, long way to say I need to deal with my van, the battery a blinker light out and oil change. Then there is the issue of two broken windows on the house... on the list... One is in the bathroom and the palmetto bugs feel the moisture from the shower and some the size of a mouse are coming in... You should see me when I find one.. What ever I can grab.. hair spray, perfume, bug spray or spray non stick.. they are going down. The air conditioner which a friends husband is coming to deal with once I get the flu bug out of here... That is totally flooding my laundry room at this point. I had no idea air handlers cycled so much moisture to make gallons and gallons of water a day. I have one sink clogged, are you following me.... My list is growing..

I am a planner, I have a list to do today, a list for tomorrow and a list in case this happens or that and a list for important things, the calendar is my guide to each day and the list fills in the gaps.... I had neglected those lists for months so today it is more than the norm... one foot in front of the other and it will be done before I know it. Today I am holding out "resting" for pay day as the trip to Disney wiped me out.. I robbed Peter to pay Paul so the kids could enjoy their time in Orlando... so we lay low and re-group next week.... costs me nothing to plan.. then I start at the top of the list and go like wildcats completing the list marking things off and feeling so good at the end of each day!

Today was an early morning for coffee with a friend..A lovely surprise. I know I looked a hot mess when she arrived due to another night of sick kids... Jordan this time crying with ear pain. Then Emma spiked a fever about 2:30am so it is today (the weekend) we have to go to the Doctor... I feel like loading up the van with them all... Lucas walked out of his room at 8am, went straight to the TV room..I was thinking he was going to watch cartoons although he didn't turn it on. He wondered about; then came face to face with me.. EYES COMPLETELY MATTED SHUT... poor baby was aimlessly traveling the floor plan..Off to the shower with warm water and he can see again. Out to the back porch for coffee I discover the dog has jumped up on the side of the pool, unhooked the filter from the side wall of the pool, the back yard is flooded and pool 1/2 empty....the grass out there is about 2 feet tall (code violation for sure) Keirsten used the mower and now it won't start...URG!!! That is going to repair shop. Why do I look like a hot mess this morning?????? Lack of sleep four days following six days packed full out of town... Where is that vacation we are talking about??? Actually, I have a few friends pulling together a MOM'S cruise. Oh I could sign on right now.

While at the single parent group in Orlando I met this single mom who explained her daily routine balancing the kids, men, house and all.... She said she has a man friend who never comes to the house...She sees him at his place (HER TIME) on a specific day and time regularly set for her and him to connect at whatever level they choose for that moment....then she went on to say she has an electrical husband, a plumber husband, an AC husband, a yard Husband... men sometimes actually "married" to her girlfriends that she has to do all the daily maintenance around the house and yard... WHERE HAVE I GONE WRONG???

I must say the other 99% of the single moms in the group were in my boat..LOL well their boat was smaller, lol

My list of things to do is growing rapidly as I can not sit and hold Ms Emma all day today although so far it hasn't been that bad (her crying) this morning, she is managing to occupy herself with play more today.

I think their bodies finally fought off the bug...all the kids are now sleeping EXCEPT Emma and Lucas who are full of smiles and energy.

The day feels like a complete washout. I think I held Emma pretty much all day to keep her from crying.... Breakfast got out of the way before she went into crabby mode, then held her to lunch, through lunch, which was quick sandwiches and soup...messy done one handed... Then held her to dinner, yes the entire afternoon, then tried to hold her but had Keirsten while I made Chicken, mashed, gravy and green beans quick and easy for their dinner... dished it out and HELD EMMA... Emma has only eaten a small amount although is drinking fine. Lucas is drinking tons and now eating... Yeah. Emma is now sitting in her play yard because I simply have no energy to chase her all over the house while I load the dishwasher, start laundry and get my morning chores I did not get to done. Lucas is being loud playing with his light up musical toys he has missed for two days... I am giving them both and hour and lights out.... Ok, smell my name being called... body is functioning.. to the changing table I go...

Fevers throughout the night..... poor baby's

If only I could put a blanket over my house for a day... Long night keeping fevers under control and Ms Emma fighting not to be in her bed, she wanted in my bed which is not safe although rationalizing about safety with a one year old is worthless. She screamed for two hours making herself so worked up. I laid and prayed that Super Nanny would magically appear as support to keep me from going to get here out of bed.. When she sleeps in my bed Jordan rolls on her and I fear something bad happening, also my bed sits so high. I have tile floors which is danger since she has no clue about not falling .. SO I buckle after a very long two hours of screaming/ not crying, she was very upset...My frustration is also that for some reason Emma feels safe to vomit when I am holding her close. After all that time I pick her up thinking I can hold her next to her bed until she is asleep and lay her back down...Oh yes!!! vomit blast all over me... not the first time this has happened and as I try to clean her up she fights to hold on to me face to face with so much fear on what is happening to her, as she empties her tummy.. yet she is laying quietly sound asleep now that all the other kids are awake..and waiting for it to be 8 am... URG. Lucas is 6 yrs old and more compliant to taking his medication and laying on his bed sick, you know when he is sick-he is down. Mandie comes tomorrow I think I will just take the day to sleep...

i have a voice

Nathan needs a 4ever family

Nathan turned 6 in June. He was adopted from Eastern Europe and is in the U.S., His family adopted 3 children all very close in age (not biologically related), so they are unable to give Nathan the assistance he needs. Nathan has been diagnosed with a somewhat mild form of FASD, which causes him some memory problems and language delays but his IQ is in the normal range. His mother says he can be very loving and affectionate, and his teachers indicate that he tries hard and is not really very behind in school. Nathan needs a new home with a single parent, or a married couple, with children who are not younger than he is. He would do best in a home where any other children are older than he is, so he doesn''t feel like he has to compete. Preference will be given to families who have completed homestudies. Please email secondchance@wiaa.org to receive more information. We had a huge amount of records, dr. reports, school reports etc. Travel will be needed by one parent to his homestate. If you email the above address you will receive information faster than by clicking the fields below.

Oh what a morning.... I went to bed last night early so woke up at midnight and blogged my day yesterday..now when I went to go back to sleep at 2:44 I met a party going on.... yes, the party had just begun. Kaitlyn had rallied the ones who would wake up and Keirsten was at the communication controls having her cell phone in her one hand texting, the house phone in the other and working the lap top in between... ALl huddled in the darkness of THREE AM IN THE MORNING!!! and she looks at me and says "what's wrong" ??? As I shut down the house AGAIN, Kaitlyn is a bit miffed that I am awake.. she tries to take charge and demands I go to my room and go back to bed...LOL With a firm hand in keeping the lights off she changed her tune and went to bed.. Lucas and Steven quickly fell back to sleep... Tressa moved to the couch and I stayed awake to see what her plan was.. She checked the door to the kitchen, the deep freezer lid and seemed to slither around not finding anything and knowing I was just up she went back to sleep... after 2 hours she was up again as if maybe some how the door was opened or items moved from the freezer. She then proceeds to go into a conversation if I remembered what she had for dinner the last time we went to Gainesville ( JUNE 2009 ) no I have no idea what we had nor where we went actually. She recalls it all. I get her to lay down although she say some break of day. She goes out to the back porch with our friend for coffee and talks their ears off...LOL She has so much drama in her conversations recalling past events.

Ms Jill is here 10 am until about 3 pm for speech today, Mandie is here and I need to do the grocery run that did not happen yesterday.
The kids are up and active, I am trying to get some initial plans for our holidays and next years conferences... just getting to the disabilities conferences is a feat for our family. I found cruises at $169.00 from our port which is a week long so I would love to skip the gifts for Christmas and do a cruise..

WED. July 22st

Today started out a little off, Jordan slept in until about 10 which indicates possible he is coming down with something, Tressa was up in the wee hours of the morning doing what she does best... our home is so methodically run that if one slip up occurs she seems to just know it. In order to keep her out of the deep freezer I load the lid with anything heavy. Yes it might look like it has something on it that needs put away although it is actually my lock as the little lock and key to deep freezers is really not worth the time of installing it..(pops right open) So indeed someone so kindly put away the laundry that was in baskets loaded on top of the freezer...and she somehow knew her opportunity was there. Steven found the frozen food in the TV room behind the chair this morning with chew marks.

Once our day started since no therapy comes on Wed until after dinner we took today to scrub the TV room, amazing what one can find in the room the children hang out in the most. Really isn't it easier to walk that item to the trash than shove it up, in around or down something? At least equally easy? I tried hard to help them see the cleaning of the room would not take so long had they just put their things away each time they had them... Keirsten is the worst about this... and it trickles down from there. I scrubbed the back porch, took down some wasp nests and Steven collected items Ali has made her own and scattered about the back yard. When do dogs stop chewing up everything??? I can not wait. Those following my puppy drama, the fence was taken care of by Kory screwing the planks in, now Ali is digging holes to get under the fence so we have dug down 2 feet and buried shelf grates and filled it in... so she digs but there is underground fencing too.... like I needed more to do right.

I got signed up for the next MAPP classes in August and some other paperwork which I had been dragging my feet on completed.. a productive day.

A friends stop by to have some girl time later this afternoon and we went up to the local grill which opened about 3 weeks ago. LAZY DOGS and yes people had their Dogs up there as well.. very welcome for lazy dogs (dogs no longer chewing and digging holes) Most were small to tiny tea cup size dogs.

We had refreshments outside with these wonderful table top fans that doubled as air conditioners/coolers... I need to find out more about those. Would love it for my back room and back porch. After a bit we picked up sushi and headed home. Jordan was giving Mandie a had time, he has a tendency to really push her buttons.

My family is a gift to many; I am seeing thier love unfold

In my life I am often too busy to stop and realize how many lives we touch. Last night I got yet another contact on how a situation we are involved in currently is going, then her request to partake in the journey. I realized I have opened my family to so many as a gift in sorts. Not to any ones surprise I am sure, we are being considered with the possibility of adding to our family. The child is out of state and now I have three separate people requesting to take the journey as my mommy's helper to pick up this child, if we are approved.

I was half scared to ask a friend to travel two years ago to assist with the children while I went out of state to adopt Lucas. I knew this person would never understand my passion to go get him, he was a very needy child. I had reservations to weather asking her to come along would hinder or assist... it was trying to say the least... BUT with all the love and support this woman became a stronger support to our family and truly understood my heart as she weathered that journey by my side. Now she has volunteered actually strongly requested that she be the person to go again if I am to adopt. She has shared with me that since our trip two years ago her life has deepened immeasurably in watching the gains this little miracle boy has made.

The other person(s) is our new respite company. They have traveled for the second time with us this summer and are aware of the situation at hand. They have requested to be the support to travel out of state with us and have so many cute stories they are sharing with their immediate family about their weeks with my children. One close relative being an attorney ad Litem in Northern Florida who commented about the passion her nieces have shared by having my children a part of their lives.

Of course as anyone can imagine my close friend would love to be a part of the journey... she is actually starting MAPP classes to allow the option of her being an adoptive mom in the future open in her life.

FUNDING to conferences...how do I do it?

Many conferences we attend if not all we do seek funding for some if not all of the costs.

The local school system gets parent training dollars and those funds can be sought to help families gain knowledge on their child's disability. Contact in our area is the local FDLRS program although yours might be different. You can call your local ESE department and ask them who manages the IDEA parent training dollars. These funds are monitored so your area might have a parent board to help decide what these funds get spent on...call and start gaining knowledge on where your parent dollars are being channeled, THANK YOU!

Local boards you can sit on. I sit on the Family Care Council board which funds me to go to the DD awareness day each year in Tallahassee where I am provided gas for travel and hotel room for my family to stay in Tallahassee to advocate for disabilities, they help fund our stay at the annual Family CAFE so that I can continue to provide current accurate up to date information to local families. They can support and did this year support part of our travel to Orlando to the National Down syndrome conference. Join local boards and be active in advocating for your causes. THANK YOU!

This trip we did get a part of the conference registration fee paid through our local Early steps program that services baby's with special needs ages zero to three. This was a big surprise last minute and actually made the trip possible last minute. THANK YOU!

Advocate agency's such as FIN, FND, Family CAFE and many, many more offer or can help locate parts of funding to get families to conferences. ASK.... your local support groups can fund raise so get active and be a part of planning.... this past conference when Kaitlyn was chosen to be a young advocate she was provided funding by LEAD which was wonderful THANK YOU! although other avenues can be found these are the ones we used. We have been active in the local support group and a couple years ago did hot dog sales for months to gain funds to travel to that annual National Down syndrome conference.

Conferences also provide some waived fees and funding so please ask, NDSC waived many self advocates I referred and some parents who are active in sharing knowledge.. the local Florida PWSA funds most of our hotel stays so we can go learn as much as we can for PWS as it is a huge part of our day to day need to know. THANK YOU!

I use my respite provider in place and use waiver dollars, also end of the year general revenue dollars can be used for conferences that occur before June 30th.. "Family CAFE" so if you wish info on that please email and I will help you. It does make a world of difference if you have quality respite during a conference so you can focus on learning and have no worries about your child/ren.

If you have specific questions feel free to email me.

Our miracle boy.....he has come so far in 2 years time

Back home, back into the grind!!!!

I woke up to a few of the kids quietly moving about the house. Tressa back into her pattern of getting up and into things... My purse taken apart in pieces as she tries to take custody of all the pennies... but everything else everywhere in her room. She has dumped out the last of a few black conference bags and located some hard candy. I had a time getting about two dozen small hard candies unstuck from her thick hair. I guess better in her hair than eaten right... urg.. she can make such a mess and she is the one child no matter what will not pick up after herself. I am telling you that with the best behavioral specialist and all the bag of tricks this girl is STUBBORN! and you will buckle before she will pick up her own mess by herself. So that was my wake up...I could smell the coffee although a quick reminder I am back on duty. I have heard word that help is on the way...Tressa's PCA person should be in place soon. They have come to our home to evaluate the times we need someone here and this we need to get through all the red tape. She has gained 10 lbs since school is out due to her ability to out wit the other children and get into places she is not aloud. She has this sense about her that I can not explain but she can focus on an item to retrieve in second at the right time and you will never know it is happening until you find the aftermath... PRADER-WILLI SYNDROME.... amazing genetic make up.

The kids were getting back in step with the 8 am rule (do not leave your room until 8 am) Breakfast is at 8 and then once their rooms are clean they are in free play. Steven is already in the pool, Keirsten preparing for her therapy and the others finding things to do.... no TV. WOW! Being Tuesday we have the normal household items, laundry... speech today for 5 hours, noon meeting with our respite provider for final signatures and payment, OT for two, clarinet lessons, Mandie comes and FCC8 tonight, with the final activity picking up the bread for the pantry. I need to call WIC to reschedule Emma's appointment from yesterday, pick up Kaitlyn's glasses that are in and do a little grocery shopping. Now, I want to finish a nice quiet cup of coffee before tackling the kitchen.

NDSC 2010 conference, Orlando, Florida

It seems so long ago that we started our drive to Orlando. The morning of Wednesday July 14th went well; no rush, just pack the van, everyone get their items collected and then into Ft Myers to pick up a funding check for covering some of the conference fees. We were funded to attend this conference which along with our volunteer free day from the GIVE A DAY, GET A DAY program we were going to be in one of the parks this trip. I could not locate the children's good swim goggles which are a must in large public pools due to the massive amounts of chlorine and they all swim with their eyes open. WE stopped at Ross where I picked up actual training goggles 2 pair for $8 which is a great deal. We cashed the check after a couple more hours than anticipated wait which now I am so thankful we did. The drive up I captured on my phone through facebook as it was raining so hard we were traveling at points 5 miles per hour... NO DANGER TO TEXT AND DRIVE at walking pace. So the time up even extended later than we figured.

Once at the hotel it was not as pleasant as when we go for Family CAFE....KUDDOS to whomever arranges the Family CAFE hostesses because not much of check in was friendly..and we are not the only ones to express this. I cut our stay back a day and paid cash for the stay. They stated I had to pay the entire bill cash up front.. (good thing I cashed that check) then they said no way can I cut off a day.. well thank goodness I had called last week to explain we might not be able to stay all the days due to many commitment's.. and the almighty dollar of staying on DISNEY grounds.. well a demand to talk to a manager and sure enough they log all phone calls to folios so I was covered..It showed my call and my reply that I was told I had up to 24 hours prior to the night to cancel no penalty... I am days not hours early to cancel. Now this pain in the rump customer complains about the location they put us..MY OH MY I am a pain. See they assumed we would want near the convention center because it is a large laid out complex. BUT the pool with the slide is in the back 40 so I asked for a connecting room in the area near the pool (actually gave ideas of room numbers) This person said they do not have connecting rooms in that build..Hhhmmm I stayed in them a couple years ago.. so I ask next set of buildings and she says well she would have to call a manager back... I am not getting a bit upset.. here is their line of thinking. I am getting conference rate at $131.00 a night per soon (x2) and they want the higher paying customers to have rooms near the big pool... so I explain that 2 weeks ago I stayed in Rancorous rooms connecting for $119.00 per room (x2) and have a problem why everything is so much more difficult this week... I then get the room I had 2 weeks ago... Daaa don't say you don't have connecting rooms in building previous customers have already stayed in... so much for their Thank you for staying with us, you are welcome to return we enjoyed having you materials we get after every stay.... so back to our room and on to more pleasurable times...we have this hotel down to a science. I can unload, unpack and the kids know where everything goes so it all works out well. We are pool side, within the hour and the kids are getting in tons of slides.. I explain we must make it an early night 9 pm because we are going to the Disney park in the morning.. We can get, Keirsten and Kailtyn went for a late night swim until about 11pm.


Thursday, July 15th we set thealarm, up at 7am we can be in the parks at 8 am but not happening... we got to the bus by 8:30 and at Hollywood Studios a tad before nine but we were not the only ones there...mobs of people and I am hot and the day isn't even beginning... It is me and the seven kids..and we learn after one line we need to go to the will call line.. then in that line we learn that we can upgrade..UPGRADE to a three day pass for $50.00 HAD I KNOWN.... oh my goodness I wanted to back off and say..lets not enter today, come back in the fall and stay three days.. THREE DAYS would be so worth it...THREE DAYS>.. but in my attempt to explain the reason of my idea..MELTDOWNS occurred... and that is a totally capital M on the meltdown. SO we entered the park, had no problem getting the move to the front of the line pass and of course my mind is going a million miles an hour on how I can magically find $400.00 extra, within the stay. I know I had to shake it off.

WE entered the park and had a mission. Off to the smaller children's area, Emma and Lucas are being picked up at noon by the child care provider so we can ride roller coasters as a family this afternoon. We go to Little Mermaid first. The lines to get photos with characters are long and waiting is taking too much time. We need to move on.. The show went well so we headed for a ride, the ride Toy Story..they all loved that even Emma. We tried again to get photos with the kids and characters but it wasn't happening. We went to the High School Musical 3 show on the main street. We went into a few shops and had fun looking at all the things we would love to buy although have no NEED for. The weather has turned so we are trying to avoid rain. It is so very hot out.

We get the kids into care and back in the park about 1pm. Straight to the roller coaster.. I am excited. This is where the whole experience turns inside out and upside down for me literally. As we enter the short line to Rockin Roller Coaster, the little ones start to cry and say they do not want on the ride. Keirsten says this is how they do every ride. I am not sure how I feel about this. Jordan is freakin out. But he keeps moving toward the front of the line?? He says no but is moving forward... He wants to sit with me. I get into the seat with him, I am holding his soda on my back and have my good camera tightly fit into the seat. I know this ride goes fast quick and the force is strong so with my glasses on I position my head to the back of the headrest and straight forward asking Jordan to put his head back so it doesn't slam as it takes off. Jordan pretty much screams and cries the entire ride.. I try to console him but it wasn't working. Then upon getting off the ride I see the other are tear filled eyed and look scared to death...BUT THIS IS WHERE I JUST DO NOT GET IT.... as we go through the gift shop exit they ask can we do it again" I ask DO WHAT? They point back and I am shocked. We exit and head to the tower of terror. In the line the crying starts again and they walk to the front of the line crying...PH I FORGOT... as Jordan gets upset he starts passing gas..not a little peep but full on gas mask fogged gas.. making many people push back. So once we get to the elevator of tower of terror Keirsten says she doesn't want to do this ride.. She has done nothing but talk about this ride and she wants me to take her photo but she is starting to tear up. I am totally blown away. My kids ride all the rides at all the fun parks.. so we are met with Disney staff who talk them into getting on the ride. Front row is Tressa. Keirsten and Steven. Behind that is Jordan myself and Kaitlyn. The ride starts and they are somber and then it starts. full out screaming help me, crying terrified cries of help me...shacking and it all... I am shocked, why do my children wish to do this and why do they cry and then YEP, when we got off ask to do it again... Well Tressa and Keirsten who were totally crying after the ride ended said they did not want to do it again.... But clearly Jordan was terrified and he clearly wanted to do it again. Keirsten wanted me to buy the photo which clearly showed the children all crying in horror...$18.00 seemed odd to spend on such miserable looking photos at both places. Am I crazy, this was odd to me... I can only equate that because at Bush Gardens the theater piece is not there, it is like carnival rides open and lit. I asked them to stop and lets get some lunch and drinks. We seek something lite, cold and wet. Jordan only wants pizza, Keirsten wants to eat in a restaurant although it is so hot that much food would put us to sleep. We decide to move to Ice Cream, and drinks drinks drinks. The kids go on the back into movies ride while Jordan cries to call Ms Nelson. he wants to talk to his little girl friend from school. He has been asking for Lilly since school ended and I can not find her phone number. We make it through and move to the back 1/2 of the park. Playground, streets from movies and there it was CARS, none other than Lightening McQueen and Madder the tow truck. In the heat of the mid afternoon sun we stood to almost passing out. Kaitlyn looked like she was going to pass out. I was at my wits end and at the same time I grabbed what I thought was Jordan hand and headed quickly to the ice cream cart .. I get a ways and realize I am pulling Tressa and Kaitlyn. I race back to get Jordan and we find a woman cut in the line....in front of my children.. OK, I was rude.... not at first but when she ignored my children I did make a comment not really necessary.... once hydrated things kicked back into normal. we finished out the park doing all the rides and skipping the Muppet movie because we just didn't have any more umpf in us to go back. I had a class at 6 pm until 9 pm and I am hot, tired and needing a shower. We go into one last show ..4 pm American Idol... What a great experience. We then face pouring rain to race for the Disney bus back to the hotel. Once we get to the hotel we change, I take a shower and get dressed for my first meeting. It felt nice without the baby's trying to get everyone ready to get back out to the hotel

When I got to my session Thursday night, it was with other support group leaders from the south eastern states. We met and made decisions for the upcoming year. This group of people got me motivated to get back in the drivers seat. I have a full day training Friday July 16th for support group leaders around the country.

When I returned back to the room the kids were asleep, the child care folks took my van to their camp site in Ft Wilderness so they could be back early in the morning since my class started at 8 am. They have a full day scheduled with the kids. Nancy is coming in to town and bringing another little girl with her mom. Friday morning the child care provider took three of the kids for hair cuts and over to the store for some times we were lacking to make for a easier week.

Friday 8am till 2:30, I enjoyed the day training for support groups which continued to fuel my need to move forward with the local support group. At the end of this event the actual conference kicked off. We had so many classes, speakers and activities to get to. Kaitlyn and Keirsten started their conference activities Friday at 3:30 and then after they have a dance 6 pm until 9 pm. This kick off called JUST DANCE is something they encouraged everyone to bring back to their communities. I plan to have several here. At the end of the night it was crash into bed...Up the next morning 8:15am classes begin and I have to have the girls into their groups. The child care company comes and we are out the door on track to more trainings.

Saturday morning up and out of the room I am in training for inclusion and then to genetic counseling. All so important so many I couldn't get to so a little of this and a little of that..

...more to come...


Sunday the session I wanted started at 10 am although Kaitlyn is playing in the talent show at 10:37 so this is where I must me. I take her stand and have her put together her clarinet along with a run through her piece. She made me so proud. I then ran to the Single parent group for sharing. I found that there are several single moms doing fine, some having similar issues and some fresh in their new role. The more amazing thing I learn EVERYWHERE is the lack of information families have on services and supports. I gave out my email to many young moms so I can help guide them to support. It was a new group so we will see who returns next year, and how everyone is doing. A short break and then into the peer group meeting on how to make a teen and young adult support group which I could see if we had a bigger newer home. Many families take turns doing BBQ's and other in home activities...If only we had that new home... so we will see how that can all unfolds, I then went into a session on how to write a book, the information on how to's.

M>I>C>K>E>Y> MOUSE..... here comes the clan

We are 90% packed, ready to head to Orlando tomorrow. I am in need of the respite... My brain is fried. I woke up today to get back on track, OT therapy all day and speech therapy all day crammed mental health therapy in a surprise interview this afternoon which took hours and then clarinet and the Adoption support group meeting and bread run.................... WHEY!!!!!!!!!!!!!!!! I may be too tired for a vacation. LOL Not, you didn't really believe that did you?

I am in need of getting myself on a schedule..too many late nights and my need to get news keeps me from sleeping. Emma is stating to follow so it need nipped. I will not take medications for sleeping so it is a matter of balancing my diet and exercercize.

I have all the kids packed and the suitcase on the couch with bag of pool toys, bag of sand toys, bag of beach toys, micro, blender, cooker etc... I have their goodie bags ready and the cooler ready to fill and load. I wanted to load the van tonight but I simply ran out of steam.. Ms Emma has had a rough day, screaming during her therapy and refusing to stand in her other therapy... Tressa and Lucas are playing around with low grade fevers, Jordan was up at 3 am today so tonight keeping him awake until 8 pm was tough. Ok, Emma is giving me fits I need to close.

Last day of prep ... off to DISNEY

We are going to Orlando for a National Down Syndrome conference. I have secured funding to help cover the costs which is wonderful. Many families are not able to attend because of the costs of conferences which is unfortunate. I feel very fortunate to be attending along with taking all my children. The National Down syndrome conference brings families together from around the country. All the families have a person with Down syndrome in their lives. This conference also exposes us to all the adults making new strides in life, showing our children all that they can be. This will be the first time we have attended where Kaitlyn or any of my children can actually participate in the actual conference. Kaitlyn is in the young adult program and Keirsten will attend the sibling group. They will be busy with their conference programs the entire weekend. I have hired respite to provide the care for the other children so that they can attend to experience the pool filled with peers like them, they can attend the dances to be among peers like them. It is an amazing experience.

Our family did the GIVE A DAY, GET A DAY, for Disney in the spring so we have our passes ready to redeem on Thursday. I believe the children have chosen Hollywood as our park to play in. Jordan keeps saying Disney ship although that is not an option. I am sure he will be happy with the park play day.

I have put together the food as we use home cooking even in hotel life. I see no reason to spend hundreds of dollars to feed us when the experience is more important than eating. I buy fun foods as well but the focus of us traveling or vacationing is not food related. New goggles is the preferred item for swimming. I do allow a treat, I am not anti food just not our focus.

Tomorrow we load the van, Jordan and I vacuumed it out today. A couple kids haircuts and shoes for Kaitlyn's dress. We have therapy again tomorrow. Oh I can not forget it is my day to pick up bread for the pantry...I had a week off and my mind went to mush..I had to think and then ask about what day we take our garbage to the road...Give me a break from responsibility and my mind wipes everything clear..LOL

3 days to DISNEY...... POOL SIDE SOUNDS PERFECT

Today has been one of those crash and burn days. Burning the midnight oil the past few days caught up to me. I wanted to watch a couple Netflix since I got home which kept me up until after 1 am. Last night I actually watched Extraordinary measures for the second time along with watching Baccalaureate from Monday night that I missed .. watching two movies at the same time is fun..ADHD helps; LOL The Netflix on the TV and the ABC show on the laptop. laying on my bed with nothing but me to focus on. Tonight is My Life in Ruins- how appropriate.. LOL

Today yet another story. Up early to have coffee on the porch which was surprisingly cool. The wind blew and the overcast kept the heat at bay so actually enjoyed a large cup of coffee outside this morning alone before the little ones were active.. well too active to enjoy coffee. Laundry has been running non stop since we got in Thursday night. All the travel items clean, their bedrooms which had been neglected all clean and all sheets, curtains and rugs with everything unstuffed washed clean and put away.

Ms Jan came today for their Sunday O.T. therapy which is a five hour process to get through the children. Tomorrow is Sewing classes. IN HOME. Yes, creative summer therapy; fine motor. measuring, cutting and actually using a real sewing machine along with many hand stitches. The four older kids in therapy; Kaitlyn, Steven, Tressa and Jordan start SEWING tomorrow. We have chosen a patchwork item which will be a bag for each to have of their own. Jordan chose a car pattern for his matchbox cars to travel in, Tressa chose a rose and solid fabric with 4" squares and a drawstring to carry her trinkets in, Steven is making one with baseball theme for hats he says, and Kaitlyn is making a makeup bag.


My day has been putting out fires with kids getting back into step with one another, Jordan is on a roll trying to catch up on time outs... Emma seems to feel she is an only child.. LOL Catching up with those I was not able to fit into this trip has not been pleasant.. I had not planned on the ones who would not come out the parties for me to see friends. I had limited time in places so I thought being at the class reunion even though not my class would help see as many as possible. The family party was AWESOME seeing so many family... but yes there was several friends and family I did not get to see. I would love to have friends and or family come to Florida so I can have quality time not stressing to get to know everyone again... BUT equally know this is not easy for others to get to Florida...

Today was a crock pot day. Left overs for lunch and dinner in a pot for easy serving yet healthy which has helped to have us on schedule for our bedtime routine just about ready to start. I am almost there... LOL My goal is to blog from beginning to end of our upcoming trip to Orlando. SO to date I have the boys shorts and tops placed on the kitchen counter (door locks) all folded and ready to go into the suitcase. I have our refillable cups from the resort clean and set aside for packing. All the travel items replenished into the travel bags which I did when we returned from camp. The bags are sitting ready to be filled with each of the kids clothes. Tomorrow I will food shop and Tuesday I will load the van. We leave about noon on Wed to Orlando.

Afternoon of Florida pool play

The kids really liked having me to themselves without distractions. We had lap races, practiced floating and some tips to do their front stroke more effecient. Steven is becoming a very good swimmer. Kaitlyn a little slower but today she focused on floating on her back. Tressa had a little girl she came friends with at the pool Julia. They are both 8 years old.