Weekly Therapy Update and LOTS more!!!

So after a bought in the hospital, Raymond had been feeling better.  He ended up back in the hospital for a few more days after that because he was dehydrated.  He seems to be feeling better but has a very runny nose.  Therapy has started back up for him.  We finally have a new physical therapist and she is wonderful.  She told me she has a brother two years younger then her with Down Syndrome.  I would guess she's somewhere in her 40's, so her brother is around that age.  Next time she comes, I want to ask her specifically how old he is.  She and Raymond have a very good relationship with sparked immediately.  Makes this mama happy : )

 

Raymond also has a new speech therapist because his previous one is out on maternity leave.  She had a healthy baby boy on Monday named Cole.  Congrats to her and her family!

 

We have been working on getting Raymond into the feeding program this summer.  Our insurance company has been not the most cooperative.  They informed us that they pay for in-patient feeding services, recognize Hershey Medical Center's billing codes and will pay on them once submitted.  Here is the problem and scary thing about that.  Last year, the insurance company denied Raymond the feeding services.  This year the say that they pay, but will not give us a pre-approval and will not tell us how much per day they are willing to pay.  Hello?  That is no help what-so-ever.  The feeding clinic cost's approximately $2,000 a day.  We will be there for up to twelve weeks.  Even if the insurance company is willing to pay half, that still leaves us with a $12,000 bill.  That isn't something financially we can handle.  Ugh.  The clinic also can't get him in until July 8th.  That's a month later then we were originally hoping.  If anyone drops out of the program we can go earlier, but without a pre-approval, we won't be going at all.

 

I called the Ronald McDonald House to make out room reservation in hopes we are going to the feeding clinic.  I was annoyed by the time I got off the phone with the guy.  He told me that I would have to check out Friday night and I could check back in on Sunday morning.  Okay.  I understand that we will not be the only people staying there.  But, we will be at the feeding clinic until 6:00 every night.  Then I will have to go back to the house, pack up all our stuff, clean the room and check out...for a day.  Then come back down Sunday, check into a new room, and unload all our stuff again.  This, all with four kids (one a newborn).  I will have a TON of stuff.  I tried explaining this to him but it didn't seem to matter.  It will be a major pain in my rear-end if I have to do that every week.  The lady at the feeding clinic who deals with the insurance told me she will talk to the Ronald McDonald House and see what she can do.  She doesn't want me to have to go through all of that either.  Hopefully we can work something out.

 

Our computer died a few weeks ago also.  We have since got a new one but I'm having a very hard time getting used to it.  It runs on Windows 8 and I don't think it is very user friendly.  I have barely been on the computer at all, to even just check my email, because I don't like the set-up.  I guess I will get used to it in time but until then, stay patient with me because I probably won't blog as much.

 

Because I didn't already have enough to do, I'm now officially a board member for Celebrate Down Syndrome.  I'm excited to be able to help them work towards there goals and make CDS a well-known name.  This group is out of Lancaster.  I've steered away from the Eastern Pennsylvania Down Syndrome Center over the past year or so for personal reasons.  I'm not going to discuss them on here but it is a group that we still support, just not nearly as much.

 

Isabella wrote me this poem:

 

"Your smile is sweet as honey.  You are better than chocolate money.  And you are the perfect love dove of life.  And you brighten my smile every day."

 

Raymond fell asleep on the living room floor and this is what Lily did...

 

She covered him with a scarf and lined up some of their stuffed animals next to him to take a nap too.

 

Everyone has been happy to have warmer weather...

 

 

For Isabella, that means wearing new summer cloths!

 

 

 

Don't forget to check out her shoes!

 

Raymond also has some new summer cloths.  I love this shirt in particular.

 

Isabella and I cut out a dress for her to sew together.  She really likes using her new sewing machine.

 

 

I signed Isabella up for a class at Jo-Anne Fabric's the other weekend.  It was a class to make headbands.  Some parts were a little difficult for her, but for the most part, I thought she did a really good job.

 

 

 

 The finished product!

 

Yes, she put a button in the middle with a skull and crossbones on it.  She LOVES anything to do with Halloween.  It started with the movie, Scooby Doo and the Ghoul School.   Then she saw Hotel Transylvania and watches it all the time.  The latest thing with girls her age and a little older is Monster High.  It's a show about mostly female monster's in high school.  She has two dolls, a DVD, a drawing set and clothing - all Monster High.  She wrote a book the other day about zombies. Oy vey! 

 

After the class we went to Salad Works for lunch.

 

 

Afterwards, we went to a birthday party for a little girl in Isabella's class.  It was at the Leesport Farmer's Market, so we parked at home and walked over.  There were a lot of activities for the kids to do.  We started at the t-shirt table.  I'm glad we did because the more kids that went over, the messier the table got. 

 

 

 

Logan, Isabella and Deja (the birthday girl)

 

Then we headed outside to wait in line to ride the horse.  Isabella, Logan and Violet (Isabella's best friend) were being very silly.

 

Violet's mom told me that she talks about going to Paris all the time with Isabella.  They've decided that Isabella will design the clothing and Violet will design all the accessories.

 

 

 

Last Friday was the Kindergarten music program.  It was packed full of parents and grandparents.  I was really surprised since it was at 9:15 in the morning on a week day.

 

Of coarse, Isabella is standing next to Violet.

 

A video for your enjoyment.  It's a little bumpy at times because I was laughing.

 

 

 

Sign's of spring are everywhere : )

 

 

I planted a pallet garden.  It has two types of lettuce and spinach in it.  Thank you Pinterest for the idea.  I love it!

 

 

It's small but more then I did last year.  I really missed not having a garden at all.  I don't want to go crazy because I can walk over to the farmer's market and buy things at very good prices but I wanted something.  Isabella's flower garden is in full bloom.

 

 

Miss Lily has been working on using the potty.  She likes wearing "princess" pull-ups.  She has only successfully used the potty a handful of times but she does like to sit on it.  Good steps in the right direction!

 

 

A while back Isabella was telling me that she wanted a website named Isabella's Fashion Designs.  I figured that I would start a blog for her that she could post pictures on of her fashions.  It is a work in progress and I will let you know when I update it.  Thus far, she has picked out and chosen every aspect of the blog.  The colors, style, fonts, etc.. 

Check it out!

 

Isabella's Fashion Design's

 

 

Raymond's Therapy Updates for the Week

 

"We have been working on:

Hand Skill Development

• grasp
• hand preference

-Prewriting, left hand for the duration with a 3-4 finger grasp

Prewriting/Coloring

• imitation of strokes, shapes
• simple representations

-Circular motion, vertical lines, dots

Visual Motor

• N/A today

Bilateral Coordination

• stringing beads
• cutting
• 2 handed tasks

 

-Attempted cutting playdoh with spring scissors - interest good - 2-handed tasks today

 

Self-Care

• N/A today

General

• direction following

 

-Needed some visuals, with verbal directions; great attention and sitting today.

 

Sensory Processing/Self Regulation

• N/A today

Motor Development

• N/A today

Other

• N/A today

We worked on these during:

• 1:1

Comments:

- Good session today, increased attention, sitting sharing/turn-taking with sister.  Worked on a variety of fine motor tasks with good participation."

-Becky, Occupational Therapist

05/01/2013

 

"We have been working on:

Classroom Routine

• attending
• following directions

-Raymond needed some prompting in order to follow directions

Pre-Academic

• N/A today

Play

• games/turn taking

-We worked on turn taking today.  Raymond participated with adult facilitation. 

Social Skills

 

-Raymond attended to teacher directed tasks with some prompting.

 

Fine Motor

• N/A today

Gross Motor

• N/A today

Other

• N/A today

 

We worked on these during:

• N/A today

Comments:
- More frustration behavior noted today. *Communication*

-Beth, Special Instruction Therapist

05/02/2013

"We have been working on:

Receptive Language

• Following Directions
• Concepts/vocabulary

- Following 1 step directions, "show me/give me"

Expressive Language

 

• Increase length of utterance

- Modeling 1 & 2 word phrases and signs

Using Functional Language

 

• Request/mand
• Protest
• Comment/label
• Ask/answer questions
• Ask for help
• Verbalizations
• Signs

- Using verbalizations and signs. "Mine", "Oh no", "Help" and "Fall down" to request objects/actions.
 

Articulation

• N/A today

Voice/Establish Fluency

• N/A today

Other

-Use "mine" and "help" verbalizations/signs throughout the week to decrease frustration
 

We worked on these during:

• 1:1 

Comments:

- N/A today"

Olivia, Speech Therapy
05/02/2013

 

Until Next Time!

Lots of Love,

Spread the Word to End the Word

Spread the Word to End the Word is an ongoing effort by the Special Olympics, Best Buddies and other supporters to raise the consciousness of society about the dehumanizing and hurtful efforts of the R-word and encourage people to pledge to stop using the R-word. 

The campaign, created by youth, is intented to engage schools, organizations, and communities to rally and pledge their support at www.r-word.org and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

The official annual day of awareness is held the first Wednesday of every March.

 

Spread the Word to End the Word was founded by college students Soeren Palumbo (Notre Dame 2011) and Tim Shriver (Yale 2011) in 2009, and continues to be led by passionate young people, Special Olympics athletes and Best Buddies participants across the United States and in many other parts of the world.

 

Respectful and inclusive language is essentail to the movement for the dignity and humanity of people with intellectual disabilites.  However, much of society, does not recognize the hurtful, dehumanizing and exclusive effects of the R-word.

 

Language affects attitudes.  Attitudes impact actions.  Make your pledge to choose respectful people first language today at www.R-word.org.

 

"I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

 

 

Tim Shriver was recently on The Colbert Report to talk about the Spread the Word to End the Word Campaign.  Steven Colbert asked him if this request, society not using the r-word, was the same as  policing language.  Without even pausing, this was Tim Shriver's response:

"I didn't say you can't use the word. I don't want to be a cop, I want to be a teacher. You're allowed to be humiliating, degrading and hurtful.  I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

 

Well put.  Very well put.

 

Until Next Time!

Lots of Love,

The Love Chromosome



To learn more about Julie and The Love Chromosome, click HERE!

Until Next Time!

Lots of Love,



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.

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

'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'

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,