“The only disability in life is a bad attitude.” -Scott Hamilton

"The only disability in life is a bad attitude." - Scott Hamilton

Wednesday, January 30, 2013

Homcoming King

Tennessee Homecoming King Nominees Give Crown to Another Teen

Three Tennessee homecoming king nominees made a unanimous and touching decision that no matter who won, they would give the crown to a beloved student with a genetic condition.
 
Students Jesse Cooper, Drew Gibbs and Zeke Grissom were all nominated for homecoming king at Community High School's basketball homecoming ceremony.

The teens got together and decided that the winner would turn over the honor to junior Scotty Maloney, who has Williams Syndrome, a neurological disorder that inhibits learning and speech.
"I've been blessed with so many things," Cooper told ABC News' Nashville affiliate WKRN-TV. "I just wanted Scotty to experience something great in his high school days."

"He's always happy, so he deserves some recognition for who he is," Gibbs said

Cooper won the popular vote for king, but when the official announcement was made at a Friday ceremony, the principal told the crowd what the nominees had decided to do.

"When they called [Scotty's] name, his eyes got really big and I don't know that he registered exactly what was happening. He knew something was," Maloney's teacher Liz Hestle Gassaway told ABCNews.com. "It was very, very emotional."

The crowd erupted with cheers and Maloney got a long standing ovation, WKRN reported, as he was awarded his "King" medal.

"It was just a ton of emotion from everybody," Grissom told WKRN. "I think I saw Scotty shed a few tears. I know Jesse was pretty emotional. We were all emotional out there on the court."

Maloney is a beloved teen in his school and in the community, Gassaway said.

"Scotty is fabulous. He is a superstar. He knows everybody. There's not one person that Scotty does not know," she said. "To know him and meet him is to love him."

Gassaway believes that the nearly 500-student school in Unionville, Tenn., is "one of the best schools in the world when it comes to dealing with special needs children."

Students like Cooper help out in special needs gym classes and other activities. Gassaway said the boys' gesture toward Maloney sent a greater message.

"We want people to have more empathy towards people, not be scared of people with disabilities," she said. "We want them to embrace them, more like the boys did."

Next year Maloney will get to crown the school's new homecoming king. But for now, he is proudly sporting his medal everywhere he goes.

"He's been wearing his medal around," Gassaway said with a laugh. "He is not here today because he had a doctor's appointment, but I'm sure he has his medal on."

What is Williams Syndrome?
Courtesy of www.williams-syndrome.org

Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.
Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.
 
But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding. As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. And as adults, most people with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.
Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression. They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.
 
I can only hope that Raymond has kind and understanding kids around him when he is in high school.  One thing that worries me more then probably anything else, is that kids will be mean or cruel to Raymond.  This article makes me realize that with constant peer-education, staff support and an inclusive education, other children can learn to be understanding and generous.  I don't think those three boys can even begin to grasp the magnitude this gesture has had, and will have, on this young man.
 
Until Next Time!
Lots of Love,
 

Monday, January 28, 2013

A Waiter Who Took A Stand!

www.dailymail.co.uk 
 
The waiter praised for REFUSING to serve man who made vile remark and complained about being seated near Down syndrome child 
 By David Mccormack 

A waiter at a steakhouse in Houston, Texas has won a lot of fans after refusing to serve a customer who made a cruel comment about a special needs child that he didn’t wish to be seated near. 

The incident took place at Laurenzo’s, where Michael Garcia has been working for more than two years and enjoys a good rapport with many of his regular customers. 

On Wednesday night he greeted two groups of regulars - Kim Castillo and her family, including five-year-old Milo who has Down syndrome, and another group who sat in the adjacent booth.

Support is flowing in from all over, thanking Michael Garcia for taking a stand for a special needs child
Milo

Michael Garcia has been working for more than two years at Laurenzo's in Houston, Texas

Michael Garcia has been working for more than two years at Laurenzo's in Houston, Texas
Not long after Garcia seated the second family they requested to be moved. Garcia duly obliged, until he heard the man say, 'Special needs children need to be special somewhere else.'
Garcia was thrown by the cruel remark and couldn't believe that the man had said it in front of his own children. Although worried that he might lose his job, Garcia felt he had to something.
‘It was very disturbing,’ he told ABC13. ‘My personal feelings just took over and I told this man, 'I'm sorry, I can't serve you.'" 

That family quickly left, but not before Garcia told him: 'How could you say that? How could you say that about a beautiful five-year-old angel?
 
Kim Castillo says she noticed the family leaving, but didn’t think anything else about it until one of Garcia’s co-workers told them what had happened.
 
'If he had been obnoxious, which like any other five-year-old he can be, I wouldn’t have thought twice about the family asking to move,' she said. 

Kim Castillo and young son Milo, she said he shouldn't be discriminated against because he has Down syndrome
Kim Castillo and young son Milo, she said he shouldn't be discriminated against because he has Down Syndrome

'No one wants to sit next to a loud, disruptive child but it had nothing to do with him having special needs. He is just a kid and shouldn’t be discriminated against. He certainly didn’t ask to be born with Down’s syndrome.'
Castillo also said that she was very grateful for Garcia standing up for her young son.
‘I was really impressed that Michael would stand up for Milo,’ said Castillo. 'He really doesn't know us … he stood up for Milo just because it was the right thing to do.'
Castillo said she was worried that Garcia might lose his job, but the restaurant stood behind his decision.
In fact Garcia has received a lot of praise for his actions after the story was featured on local TV and blogs. The restaurant’s Facebook page been inundated with people leaving comments of support for his brave stand about prejudice.
Gracious Garcia has also said that if the other family who made the ill-conceived remarks return, he will serve them just like anyone else. 
 
Waiter Michael Garcia described five-year-old Milo Castillo as a 'little angel'
Waiter Michael Garcia described five-year-old Milo Castillo as a 'little angel'

GOOD FOR HIM!!!  It warms my heart to know there are still good people out there willing to stand up for others.

Until Next Time!
Lots of Love,

Saturday, January 26, 2013

Einstein


Until Next Time!
Lots of Love,

Friday, January 25, 2013

Weekly Therapy Update & More

I'm going to share Raymond's therapy update a little differently then in the past.  Instead of just coping what the therapist wrote in the comments section, I am going to include the other sections of the therapy record.  You can leave me a comment to tell me whether you like it this way or the old way I posted the updates better.  I thought this might be a little easier to understand at times.  All of the therapists fill out different forms.  They basically have the same information on them with slight variations to fit that specific therapy.

"We have been working on:
Hand Skill Development
  • grasp
  • hand preference
-Holding crayons, mostly left hand - pronated to draw

Prewriting/Coloring
  • imitation of strokes, shapes
-Worked on lines/circles - no imitation today

Visual Motor
  • blocks
-Stacking nesting blocks

Bilateral Coordination
  • stringing beads
Self-Care
  • N/A today
General
  • N/A today
Sensory Processing/Self Regulation
  • N/A today
Motor Development
  • shoulder stability
-Tried to get Raymond prone on scooter; however, he didn't cooperate for this.

Other
  • N/A today
We worked on these during:
  • 1:1
Comments:
- Raymond needed some encouragement at times but did participate well with drawing, puzzles, and 2-handed tasks.  Will continue to try weight bearing activities.  Good verbalization today, "Ready, set, go" etc."

-Becky, Occupational Therapist
01/23/2013
 
 
"We have been working on:
Receptive Language
  • following directions
  • language processing
 
- Emerging ability noted to point to named items from 2
 
Expressive Language
  • N/A today
Using Functional Language

- Choice-making was a big focus in today's session.  Raymond is making nice choices between items.  He is choosing desired items when paired with non-desired. : )

Articulation

- Raymond practiced communicating "open" today.  Lots of models given.  He did sign independently 1x and imitated open 3x.

Voice/Establish Fluency

- Raymond completed 2 fill-ins with words today

Other
  • N/A today
We worked on these during:
  • 1:1 (Home)
Comments
-Gave 3 functional words to work on plus suggestions for eliciting/practicing in home routine."

-Allison, Speech Therapy
01/24/2013
 
 
Lily's Therapy Update for the Week
 
"Progress since last session - Including Parent Report:
 
- Lily has been drinking more milk lately and asking for it by name and is doing better asking for foods at mealtime.
 
Outcome(s)/Goal(s) from IFSP/IEP to be addressed:
 
- #1. Lily will increase her language to express her wants/needs especially at mealtime.
 
Daily Routines Used:
  • Play with toys
  • Songs and Rhymes
Strategies Used
  • Turn Taking
  • Offer Choices
  • Modify Environment
  • Describing or Labeling What You Are Doing
  • Adjusting Pace by Wait or Pause for Response
  • Model or Demonstrate for Child
  • Encourage Child to Imitate
What we did today to address outcome:
 
- Food/picture discrimination.  Lily pointed/indicated correct item with 2 choices 7x.  She names some food items.  We practiced "No and food name." 
- Playdoh play routine. We coded and modeled single words and phrases.
- We played the vowel song and practiced long vowels.  Lily tends to use neutral/short vowels, although she used "o" for "oo" today.
-Lily nicely used "me!" during turn-taking and attempted to imitate "you."
 
Plans for next session:
 
- Food/Kitchen Play
 
Suggestions for families to do within their activities/routines:
 
- Vowel song CD left with family.  Review you (oo)/me (ee) during turn-taking throughout routines.
 
Progress information to be collected between sessions:
 
- Words Lily is using to request at mealtimes."
 
-Ellen, Speech Therapy
01/24/2013 
 
So again, leave me a comment and let me know which way you like the therapy updates better. 
 
***
Isabella continues to do very well in Kindergarten.  Her favorite subject is science.  Each child in her class had to build a car for their most recent science lesson.  Isabella was SO excited about this assignment.  It was to be nothing fancy - small in size and made from things you already had around the house.
 

 
 
I don't know about you, but that's the girliest car I've ever seen.  She totally loves it!!!
Good job Noodle!  You are so creative! 
 
I'll leave you with some dress-up fun.
(In case you are wondering, Isabella tried, but Raymond was NOT interested in dressing up.)
 


 
 Until Next Time!
Lots of Love, 

Wednesday, January 23, 2013

Wahoo!!!

FINALLY!!!  I was able to upload some pictures to the blog.  So much has been going on lately, that I don't even know where to start.  I'm sure there are many things I will leave out but I'll fill you in as much as I can.  First, we took the kids to the farm show in Harrisburg.  This is the first time Lily has ever been there and all three kids really enjoyed themselves. 
Lily and Raymond especially likes the cows.



 
  
This cow kept mooing which made Lily laugh and laugh.

 We also looked at the chickens, ducks and roosters.
Don't forget about the bunnies!

 Isabella liked looking at the bee's.  She talked to the man at the table about for for awhile.  He told her a lot about the bee's and she asked a lot of questions.
After that we went to the butterfly tent.  The girls and I went in while Daddy waited outside with Raymond.  You aren't able to take strollers in and I don't think Raymond would like it anyway.
 Lily sure enjoyed it!
 My big girl!

We all had lots of fun.

Isabella was invited to a birthday party of a little girl in her class named Logan.  This wasn't the first party she was invited to but it was the first party I let her attend.  Isabella talks about her a lot. 
These are the only three pictures I snapped.
 
 Isabella and all her little friends had a blast.  There was a whole lot of laughing and screaming going on for those three hours!

I'm trying to think of what else to tell you.  We have been very busy with lots of appointments.  Raymond's therapy is back to normal...sort of.  Some of his therapists have been sick so several sessions had to be cancelled.  Lily's therapy continues to go well.  I'll try to post a therapy update this Friday.  It's been awhile for one of those.

Back on January 8th, Raymond had an appointment at the feeding clinic.  This is the number one thing I get asked about Raymond.  When is he going to eat?  Why can't he eat?  Etc.  I don't know why but lately it's been annoying me being asked those questions.  I also think it has to do with other people when we are out in public.  For example, when we go to the grocery store, at the deli counter and the kids are offered a piece of cheese.  The girls get one and Raymond doesn't.  When we go out to dinner (which isn't often) and Raymond is the only one not eating.  People seem to want an explanation.  I shouldn't have to get into it and 99% of the time I don't...because that leads to 50 more questions.  So for those who are curious, here are a few highlights from the doctor's notes from that appointment.

"-Continues to eat essentially nothing.  Shows interest, but does not typically allow food in his mouth.  Currently receives Nutren Jr. w/fiber, 4 boxes (32oz/day).  Has no trouble with the 4 bolus feeds/day.
- I fed Raymond today for 10 minutes.  I presented multiple bites of yogurt which he accepted willingly.  He expelled every bite multiple times, but did swallow 12 grams of yogurt."

One of the major concerns that Dr. Williams discussed with me was Raymond's growth.  He said that Raymond has weighed between 24 and 26 pounds for the past 2, almost 2 1/2 years.  Believe it or not, that wasn't the concerning thing.  What was alarming to him is that Raymond has only grown about a centimeter in height that entire time.  He said he doesn't think anything is physically wrong with Raymond that he is not growing.  Dr. Williams said he believes it is totally a result of his lack of nutrition. I must say that I agree.  We plan to have Raymond go into the in-patient feeding program in June once Isabella is out of school.  Hopefully this will be just the thing he needs.

Raymond also had an EEG scheduled last week.  His neurologist wanted to see the seizure activity in Raymond's brain.  I explained to her that Raymond's previous neurologist never scheduled EEG's because Raymond is NOT cooperative for them.  She insisted.  So we went.  I think Raymond thought he was having an echo cardiogram because he climbed right up on the table, laid down and put his hands behind his head.  It wasn't until she started to touch his head that things went downhill very quickly.  She called in another nurse, and the two of us attempted to hold him down while she put the probes on his head.  After almost two hours, with no success, we were all exhausted.  So the test was never done.  I'm sure Dr. Zinger is not going to be happy but until she witnesses Raymond's resistance first hand, she will never understand.

Yesterday Raymond had a dentist appointment.  His dentist is a wonderful man.  He is so good and patient with Raymond.  Raymond was not very interested in having his teeth examined but Dr. Ross was able to see what he needed.  Everything looks good and we don't have to go back for another 6 months.  That reminds me, I need to schedule a dentist appointment for Isabella.

 Until Next Time!
Lots of Love,

Sunday, January 13, 2013

I'm still here and trying to post, but for some reason Blogger won't allow me to upload any pictures.  I've been trying for several days with no luck.  I'll keep trying so hang in there and I'll keep working on it.  Hopefully I'll be able to get some pictures on here sooner then later. 

Thursday, January 3, 2013

The Holiday Scramble

I don't have as many pictures from Christmas that I normally do.  Our camera has been acting up a lot lately.  It keeps switching settings all by its self and the pictures are turning out blurry, yellow and so on.  I think with our tax return we are going to have to buy a new one. 
Here are a few pictures that turned out okay.
 


 
Sophie kept trying to crawl into the trash bag.







 
Grammy was helping get everything out of the packaging.


 
Raymond and Lily both love this little car racing track.
 
The Saturday after Christmas, we went to my families Christmas exchange in Lancaster.




 
Paige (who is running away), Melody, Lily and Isabella.





 
Elijah and Addie
 
 
Melody - who didn't know I was taking her picture.



 
Selena and Logan

 
Miss Paige
What a mischievous face!
 
Until Next Time!
Lots of Love,