HALLOWEEN!!!!!!

SUPERDREW!

AMELIA IN THE 50'S!

AVA-LEOPARD!

CHIMP!!!!

The scene tonight...Dave took the girls to our old neighborhood for trick or treating. Drew and I are holding things down here back in our warm home!

SNOWtober

The afternoon scene here at home! Wow! Look at that snow!

We have quite the sledding hill out back now. Here are the girls with their friend.

Those are our pumpkins oovered in snow! Hope they aren't frozen, we have some carving to do!

This is how Drew & Dave enjoy the snow...Sooner Football watching!


We woke up to snow and as of 6:30 this evening...it's still snowing! We took a drive to the "big city" today to see Disney Princesses on Ice. Jenna sat still for about five minutes of it, and then found the many stairwells more fascinating. We drove home in a cold, messy rain, to find our town completely covered in snow!

Simple Things - Smiles and Laughs

My happy boy is laughing and eating again!!

Heard today that my two month long fight with the county and with the state for excusing Andrew from the state mandated Alt-MSA testing was accepted. Andrew will not be subjected to answering questions he cannot comprehend over and over again all in front of a camera which satisfies a silly state requirement. One of my letters is below, and a recently published article....

http://www.fredericknewspost.com/sections/news/display_Comments.htm?section=a1&storyID=127649#postComments



TO:
Assistant State Superintendent Division of Special Education/Early Intervention Services

I would like to bring to your attention difficulties that I am having with a recent IEP decision made regarding my son and my request for his excusal for Alt-MSA testing. My purpose of writing this letter is to share with you how students who are severely cognitively impaired and their families are dealing with State Alt-MSA testing rules and guidelines which I do not find fair and appropriate. I believe these guidelines are not in the best interests of these particular students.
My son Andrew is 12 and attends Rock Creek School in Frederick County. He has multiple disabilities, including cerebral palsy affecting his entire body, cortical visual impairment, daily seizures, non-verbal, and severe cognitive impairment. He has many, many issues and is medically fragile. I am very happy with the staff and the program in place at Rock Creek School. My son has been a student there for seven years. We are involved parents and want to make sure our son who cannot communicate is educated and cared for properly. At this stage of Andrew’s life, we merely seek the simple things, his health and his happiness. Overall, Rock Creek provides a stimulating, educational, social and therapeutic environment for my son to take part in. It came to my attention a few years ago that Andrew was at an age where he would be put through months and months of testing to fulfill the mandated State Alt-MSA testing requirement. I have watched disheartened over the years as my son’s IEP has changed to accommodate this testing and not the appropriate education that he is entitled to.
It came to my attention at the end of June that a new checklist and process had been put in place to excuse students like my son who are so severely impaired from taking part in the Alt-MSA testing. In July I requested more information from our school’s Principal regarding this process. She forwarded the checklist and part of the manual to me for review. After review and knowing my son meets the criteria, I contacted our Principal to start the process. We set an IEP meeting for the first week of September to go over the excusal checklist. The meeting consisted of nine team members, only two people (one being me) even knew Andrew and his current abilities. It seemed clear to me that the team agreed that Andrew met the checklist for excusal, but previous assessments (from seven years earlier) show Andrew more capable than he is. Even since Andrew’s early days receiving Infants and Toddlers services reports were written with “fluff” that show Andrew in a way which clearly wasn’t matching to his level and his abilities. At this meeting I asked for reports which would now accurately reflect Andrew and his abilities. I was told, “We were out of time and what would the new reports show anyways”. Well, after my persistence we all did agree for new psychological and educational assessments. These were done quickly and do now accurately reflect Andrew and his abilities.
I was called to another IEP meeting in mid-September where I assumed the State criteria were met. I was even told on the phone that Andrew’s paperwork would be submitted to the State (hand carried to the county level, and then faxed to the state level - all to meet the State’s deadline of the next day). Well, once again after an hour’s time of reviewing current assessments and checklist items, I was told by county officials that Andrew did not meet the criteria because his previous IEP progress reports did show Andrew making progress towards his Alt-MSA goals. These reports are not accurate.
Apparently, the current accurate assessments, note from Andrew’s pediatrician, and even the team in agreement over Andrew’s abilities were not enough to submit this request to the state. How is it that even though Andrew is severely cognitively impaired (that of a six month old or less as noted by the team), his disability affects use of his arms and hands to hit a switch, his actual intentions on activating switches are unclear, discussion of Andrew’s severe daily seizures and mind altering medicines that interrupt his brain constantly, and even causing regression does not meet the state’s excusal checklist? How is that possible? Also, the State has presented this new checklist in recent months, but IEP teams are only allowed two months to gather data to submit for the excusal. Why the deadline of September 16th?
All I wish for my son, as stated earlier was for his health and happiness. I do not want him subject to the torture of months and months of videotaping and questioning in which he is not capable of comprehending at all. This is disrespectful to Andrew and to us as his parents. I am flabbergasted that past progress reports, assessments, and IEPS are being written to reflect the school and the school’s performance, and not written for my son and what he needs now.
I am extremely frustrated with this complicated process. I have contacted County officials who are aware of my concerns and are working on the county level to ensure Andrew’s IEP will finally reflect him and what he needs. Officials also indicated that the County has to follow guidelines as put forth by the State or they will be sanctioned. We have passed the September 16th deadline and the team would not submit my son’s excusal request to the State for their review. I do though look forward to hearing from someone at the State level who can offer an explanation as to how we can make this a better process for parents like me who are trying to do what is right for their children who are severely, cognitively impaired.

More FALL FUN

Beautiful morning to spend at Crumland Farms.

Fall Festival

Sunset views from The Comus Inn.

The girls and the scarecrows.

Jenna coming down the slide!


Grandma and Grandpa invited us to St. Mary's Church Fall Festival in Barnesville tonight. We enjoyed dinner, a little time on the playground and a beautiful sunset at Sugarloaf Mountain.

Time for Twos

This is Jenna after this morning's storytime receiving a little lecture from me....Note the Dora winter Pj's that she wouldn't change out of this morning, note the messy hair that she wouldn't let me brush.

But wait, there's more... the stuff you can't see such as..during storytime she did anything but listen...pulled out chairs, stood on them, turned the lights on and off, stood in front of the felt board the entire time it was being used, walked through the sea of kids and moms several times as if they were a maze, and refused sitting on my lap no matter how many times I asked.

Oh, wait....she did sit still at the very end, when the teacher told her to sit and put her hands on her head so she could get train stamps on her hands.....
Luckily it is just Time for Two's Storytime...

Fall FUN

 

Mustang Ride after school!

Funfit Graduate!!

Fall Swinging

You could say that's a pile of leaves...

Soccer Star

See my real life Halloween monsters?

The Family at Jumbo's - 11 years in a row!

Girls on the Hayride!

Drew posing again by the pretty mums.

Ava and her pumpkin.

A link I liked

A friend posted this link she found, and I think it's right on.

http://www.whatiwouldtellyou.com/

Andrew Update

Writing this post...to keep a record for myself.....

These past few months have passed and slowly Andrew has gone from being a eager, happy two meals a day plus snack eater, to barely eating anything at all.  Andrew is 12 and people have been commenting that Andrew is on his growth spurt "spreading out" and looking good.  I thought that was what was going on, until I weighed him a  little over a week ago.  Andrew has gone from a top weight of 104lbs to currently 79lbs.  He is noticeably skinnier throughout his entire body. ( I preferred the "hefty" Drew.)  This summer per our doctors orders we increased his one seizure med and very, very slowly weaned the another. After months and months, Andrew was off of the highly addictive Clobazam and on a max dose of 800mg Banzel 2 x day.  He remained on Felbatol 4cc three times per day.  Even back at the old house (April) we noticed Andrew not eating as well, but definitely as of September it is a struggle to get any food in him at all.  It's gotten so bad, I am going into school to feed Andrew lunch so that he doesn't come home from school at 4:45pm without eating the entire day.  A side effect of Banzel is loss of appetite, nausea, vomiting.  Andrew is showing these side effects.  We have talked with the doctor, and are now weaning the Banzel, adding a very small amount of Clobazam back in, and increasing the Felbatol to 5cc, 4cc, 5cc to compensate for the Banzel reduction.  We hope that Banzel is the problem -( and that there are no other hidden medical problems we can't see!).  We hope to see Andrew's appetite return.  Also as we reduced the last Clobazam pill, a stronger seizure did present (lasting 60+ seconds, more tonic clonic shaking, and loud grunting), and also Andrew's muscles became tighter. (Clobazam is a muscle relaxer).  Hopefully the Clobazam pill addition will take care of that stronger seizure, and loosen him up a bit. We will also supplement Andrew's food intake with Pediasure.  Hoping this resolves soon.

. 

Pretty sky tonight..

My Boy...

Today marks the day my son Jacob Daniel was born way to early, way to sick.  Simply put.... no amount of prayer, or doctors, or medical intervention could have kept him alive. 

Now ten years later..I'm one of "those" moms.  A mom with no explanation at all as to why having a healthy baby works out for some and not for others.  I have experienced a loss that is unexplainable.  No explanation, no matter what I believe.  My infant son died and I will never know what kind of son he would have been, who he would have become, what kind of brother he would have been to Andrew, who he would have looked like, or any of that. 

I would have liked nothing more than to decorate the kitchen table with what you love, and to make you feel extra special for your 10th birthday. 
Happy Birthday.

Happy Birthday to my Ava!

My girl is a sassy 6 today!  Last night when I put her to bed she told me to go ahead downstairs and decorate so she could get her birthday started as soon as possible.  (She knows I always decorate our kitchen table area).  The top picture was taken this morning as we went to the bus stop.  Ava came home with a birthday crown and a birthday pencil.  We were told she heard her name on the loud speaker this morning. " Happy Birthday to Ava Mae Ablondi.  Come up front to the office and get your pencil." The next two pictures are this afternoon.  Ava's most enthusiastic gift was the Barbie make up set fro m Grandma.  She also liked her "pajama jeans" from us.  Dave and I twisted things up a bit and decorated our dining room this afternoon so when Ava came home from school she would be surprised by a spooky room (Ava's House of Horrors).  The picture is showing our "prized scariest piece" the talking spooky grim reaper.  That's Ava making friends with him - saying "I know you are just a toy, I'm not scared of you".  The last is the Barbie cake, which we all enjoyed, but Ava didn't want any.  Go figure.

Hope you had a wonderful birthday Ava!   We love you!!

TWO AND A HALF!!!