Send a Card to Alex

First, read my post below...

Then click here to send a card to Alex!

Unimaginable....

I am truly disgusted...

St. Lucie teacher has students vote on whether 5-year-old can stay in class

By Colleen Wixon (Contact)Originally published 01:50 p.m., May 23, 2008Updated 04:30 p.m., May 23, 2008


PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher said they were going to take a vote, Barton said.

By a 14 to 2 margin, the class voted him out of the class.

Barton said her son is in the process of being diagnosed with Asperger's, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully.

Alex has had disciplinary issues because of his disabilities, Barton said. The school and district has met with Barton and her son to create an individual education plan, she said. His teacher, Wendy Portillo, has attended these meetings, she said.

Barton said after the vote, Alex's teacher asked him how he felt.

"He said, 'I feel sad,'" she said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said.

Barton said when she came to pick up her son at the school on Wednesday, he was leaving the nurse's office.

"He was shaken up," she said. Barton said the nurse told her to talk with the child's teacher, who told her what happened.

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special."

Barton said Alex is reliving the incident.

They said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

The child's mother filed a complaint with the school resource officer, who investigated the matter, said Port St. Lucie spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. Port St. Lucie Police is no longer investigating, but is documenting the complaint, she said.

Steele said the teacher confirmed the incident did occur.

St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.

Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside, but said he could not elaborate.

Wheelchair Woes, Part 2

Does anyone know how often insurance will cover a wheelchair? We have private insurance (Highmark) and Medical Assistance (Gateway). Jack received his first wheelchair in December of 2006 (although it was ordered nearly a year before then -- they go by the date delivered). We recently had it adjusted for growth -- and while he fits well now I am not sure how long until his next growth spurt.

Also, he isn't able to use the chair with both arms functionally. Since I knew NOTHING about wheelchairs before his first one, I trusted the seating clinic to know what to order. The chair simply does not work for independent mobility. We are in need of a one arm drive system (where the user can use two hand rims to maneuver on one side of the wheelchair). This will prevent the large circles he is doing now...which of course frustrates him!

This is becoming even more important as he enters Kindergarten. He will use his walker for short distances -- but he fatigues easily and will need his wheelchair even more this coming school year to get around the large elementary school.

His physiatrist would provide us with all letters of medical necessity as well as the prescription and we would use a local DME instead of the seating clinic this time.

There is only one pediatric wheelchair system that offers a one arm drive and luckily it's a brand that insurance companies have been known to cover (because it's less expensive than others, and pretty much a simple, unfancy chair).

I really wish I would have known then what I know now about wheelchairs. There's nothing worse than being stuck with something that doesn't work...

Any tips, advice, words of wisdom for getting insurance to cover the new chair would be appreciated!

I am considering paying out of pocket if we can't get insurance to cover it. Now, I just need to find $3500!!!!! Let me see if the money tree has grown yet, lol! In all seriousness that isn't very expensive when it comes to a wheelchair. Jack's current chair was nearly $8000. Insane, since it DOESN'T WORK for him.

Karate and The Story About Kevin...

Jack is Super -Excited...

So I googled Cerebral Palsy and Karate this morning and came upon this article. It made me wonder if Jack could take Karate lessons. I am trying to find some summer activities for Jack that are less clinical and therapy oriented and more community and fun based! So far I am looking into horseback riding, karate, and a gym/tumble class.

Sometimes I get fed up with hospitals, doctors, nurses and therapies...no offense to any of you -- we LOVE you, but I think this summer we're taking a BREAK and are going to live life just a little more on the outside than the inside of clinical settings. Besides -- Jack will start FULL DAY Kindergarten in the fall. I will be lost without my little man for most of the day...although Morgan and I are sure to find something to do...lol

So that's my plan and I am sticking to it. I emailed a local Karate Studio asking if they could accomodate a disabled child in their class. I truly hope so...if not, we'll find someone who can! I'll keep you posted!

A Few FOUR LETTER WORDS...

I am reposting this from Wheelchair Diffusion

A spam attack on online forums and help centers of the Epilepsy Foundation appear to have been designed to trigger seizures in persons with epilepsy.

“On Easter weekend, the Epilepsy Foundation—and those who use its online forums for help, support, suggestions and camaraderie—came under attack by people who posted rapidly flashing images to cause serious injury and harm. The type of epilepsy that causes people to experience seizures upon seeing flashing or flickering images is photosensitive epilepsy.”


Read the rest at: http://www.epilepsyfoundation.org/aboutus/pressroom/action_against_hackers.cfm

__________________

This makes me sick...and very sad. This takes time and energy -- someone put thought into HARMING people with seizures. Unbelievable. May they get what they deserve...

Morgan!!!!!!!

MORGAN TOOK HER FIRST STEPS!!!!!!!!I can't believe it! She took her steps from Jason to me about 4 steps on her own -- then later about 13 or so steps across the room to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAY!

"Jack Riley - On the Move" Movie...

Okay, so I tried my hand at creating a movie with Windows Movie Maker. I must admit I've watched it over and over again...(I can't wait to make more -- and play with more of the features!!)

Enjoy!

HAPPY BIRTHDAY MORGAN!

Dear, sweet Morgan, HAPPY FIRST BIRTHDAY to my beautiful little girl. You are such a wonderful part of our family, we love you, Happy Birthday!!!!!

DDS Empowerment Auction

As most of you know, Jack is one of the poster kids for Developmental and Disability Services of Lebanon County this year.

Tonight we will be attending the annual Empowerment Auction! If you're interested in checking out the items up for bid come on out to the Quality Inn in Lebanon. We will be there at 6:00 pm tonight!

A piece of Jack's art work is up for auction -- he's quite the little philanthropist, isn't' he?

LIVE & SILENT AUCTION

Doors Open At 4 p.m. for Preview & Food Sales

Auction Begins at 5 p.m.

QUALITY INN

625 Quentin Rd.

Lebanon, PA 17042

Hope to see you there!

GOOOOOAAAAAAALLLLLLL!!!!!!!!!

Wow, just overnight we've SURPASSED our fundraising goal!!!!!!

A sincere thank you to everyone. We're ready to MARCH FOR BABIES!!!

Almost to our Team Goal!!

We are NEARLY there!! $935 of our $1000 team goal has been met!!!

Let's have a little fun. For everyone who donates online from now until walk day I will send you an "Original Jack Riley" piece of art!! I know you want one! lol...

Here is the link to our TEAM PAGE!

Lots of love to all of you!

The Young@Heart Chorus

"It is possible to age gracefully.
It is possible to grow old without growing boring."

http://www.youngatheartchorus.com

I am inspired and truly hope to one day see them perform! To see more videos go to youtube and type in young@heart chorus...they have many great covers. I love this song by Cold Play...

Possibility Place Videos...

A few short clips from the playground!

Walk Day is Near!!

It's not too late to join our March for Babies team!

Event Information
Sunday 4/27/2008
12:00 PM Met-Ed Building
600 South Fifth Avenue
Lebanon, PA

Our team goal this year is $1000!! We're getting there with a total of $735 so far! I am so grateful and humbled by all of your generous donations. I want to say thank you to everyone who donated, and thank you in advance to those who will!!

Jack, born at 25 weeks spent 3 months in the NICU...

The "R Word" Campain...

The “R” Word

Some people have mental retardation. While mental retardation is not a bad word, when used to describe someone or something you think is bad it becomes another thoughtless hurtful word. People with mental retardation are not bad, their condition is not bad, the prejudice and discrimination to people with mental retardation is BAD…and WRONG! Please stop using the word ‘retard’, it hurts people with disabilities.

http://therword.org/

Possibility Place...

My friend Kris and her daughter Alicia came to stay with us last weekend! We had an amazing time. They live about two hours away and we plan at least two visits a year where we visit them or they come visit us. Kris's daughter Alicia is also a former 25 week preemie, now 6 years old. Alicia is diagnosed with CP too. She walks with DAFO's and is just the sweetest, cutest, smartest little girl!!

I dreamed of the day they would visit and we would take the kids to possibility place playground. It was all I imagined and MORE! Jack was able to use his walker all over the place. The ground is made of a very soft material (from recycled tires I believe) and they have ramps for walkers/wheelchairs on everything! The sandbox is raised, they have play areas and stations accessible to EVERYONE! They have a sensory wall and imaginative play is everywhere! Without further introduction, check out the pics...

I hope to go back to the playground this weekend. It's about 45 minutes from our house -- but I can't WAIT to show Jason how awesome it is to watch Jack RUN, yes, RUN around on his own, able to explore and just be a kid. Simply priceless...

I encourage all of you to find an accessible playground in your area. If you don't have one, start contacting people and get the idea out there!!!

WOW!

Every day she's getting closer to that first step! PS -- how CUTE is she?? lol, a bit biased, I know!!

Newborn Screening in PA

Here's How You Can Help:

Email Senate Appropriations Chair Gibson Armstrong at garmstrong@pasen.gov

Dear Senator Armstrong: Please move House Bill 883, fully funded, to a successful passage in the Senate. Pennsylvania's babies need this protection. Thank you.

Go to http://www.legis.state.pa.us/.

Enter your zipcode to find your PA Senator's email address. Email your Senator the following message:

Dear Senator: Please send a letter to Senate Appropriations Chair Armstrong requesting funding for, and passage of, House Bill 883. Newborn screening saves babies lives. Thank you.

Please share this request with all interested parties within your circle of influence. Pennsylvania's newborns need the safeguard this legislation will provide. Thank you!

Please copy kjadams@marchofdimes.com, so we may track all contacts.

PENNSYLVANIA ADVOCACY PRIORITY
PLEASE TAKE ACTION NOW!

Time is critical -- we need your help to secure passage of newborn screening legislation.
March of Dimes is working hard to expand Pennsylvania's Newborn Screening Program to include the 29 "core" treatable conditions recommended by American College of Medical Genetics and endorsed by the March of Dimes and the American Academy of Pediatrics. Failure to screen and treat for these metabolic conditions leaves newborns at risk for life-altering consequences including brain damage, coma, and even death.

Senator Jane Orie and Representative George Kenney introduced companion legislation in the House and Senate to expand the state's program and to appropriate $2 million, which will cover the Department of Health costs to administer the program including funding regional treatment centers throughout the state. House Bill #883 unanimously passed the PA House and awaits consideration in the Senate Appropriations Committee.

Be Careful!

I received a call from an unknown name/number this morning with a fast talking guy on the other end...quickly said his name as "Douglas Fir" and in my head I was giggling thinking "your name is a tree"...anyway he was campaigning for Obama and asked if I could contribute money. $300 was the "top level" gift for the senator...I was able to get a quick word in and said "No thank you I am still deciding who to support." and promptly ended the call.

It got me thinking if it was really someone from Obama's campaign...what's to stop scam artists from calling and asking for money? If I had no morals maybe I could make a quick buck this way? lol, j/k...anyway my suggestion would be to go through chains you know are legit (official websites, phone numbers or campaign headquarters).

Who knows, this may or may not have been on the up and up...but I wasn't taking the chance and thought I would share my thoughts with you guys!

Take care!

Miss Morgan got a special gift from the Easter Bunny...THREE NEW TEETH!!! She now has three on the bottom and two on top...and is darn adorable.

She said her first real word "cat" which also happened to be Jack's first word too...I have a video and will share it as soon as I get it online.

Morgan also stood for several seconds all on her own! Once she realized what she was doing she dropped to her tush and laughed...I can't believe how much she's growing and changing! She's eating stage 3 foods and diced table food. She loves green beans of all things (I have photo evidence for when she's older, like Jack, and refuses to touch anything green...lol)

Jack is really growing up too. He had his 5 year well child visit this morning and is a whopping 38 lbs and a long 42.5 inches! He's 40% for weight and 50% for height!!!!!! Can you believe it???? He's ON THE CHART and not just by the skin of his teeth anymore!!!

Jack's language is really taking off. He's using so many new words and combining 2 and 3 together regularly. We started outpatient speech therapy at our local hospital and I am excited about our sessions! We go every Friday -- and Morgan gets to visit with Grandma seeing as she lives just steps away from GSH. Jack has always had a problem with ending his words...for example Bah for Ball, Geh for Get, etc. Well he's trying soooooo hard and has started really thinking about what he is saying and the result is some awesome crystal clear words!! I am in awe of my man every single day.

Now that it's warmer outside we've been taking his walker out and about on daily errands. This morning he fell into the mud, face first...but only asked for help, and went right back to walking. I'll tell you, if I fell like that I would ball my eyes out!! He's my strong, brave, AMAZING kiddo!

I just wanted to give a quick update -- the bus will be here any minute!! Happy spring everyone!!!!