Happy Siblings Day! "MY Brother" (6 yr. old tells about her brother w/Down Syndrome)

HAPPY SIBLINGS DAY!

MY BROTHER

A six year old tells about her brother with Down Syndrome

I found this sweet post on the National Down Syndrome Society's FB page  https://www.facebook.com/NDSS1979?fref=nf .

Siblings of children with special needs really face a lot both with a different family dynamic from many of their peers as well as environmental/society factors involved.  However, one of the many many beautiful benefits for these siblings is an increased understanding of some of the most important things in life that effect US ALL ... things like wisdom, compassion, and a greater understanding of how "people are".  They also hold insight on how to immensely love and accept others, despite differences, and they learn this very necessary skill far sooner than most of us.  This takes the rest of the world much longer to learn!  That leads me to my final point about these awesome siblings ... and that is they are natural born teachers.  They show us how we should be loving, how we should be acting, and how to resolve our fears.

Through all the hard times ... still ... what a gift it is for the a child to be a sibling of a child with special needs  AND what a gift it is for a child with special needs to have such a sibling.

WELL ... I thought that was the end of today's blog post UNTIL I came across this gem online ... please read and share with that boy or girl you know that needs it!

Dear Sibling to a Child with special needs ... Let me tell you why you are amazing! (Letter to a sibling)


Jessica Daisi

Bycicle Camp - DSAL event for children with special needs

Down Syndrome Association of the Lowcountry (DSAL) Event!
(Click link below for registration form/info)

Lose the Training Wheels

Bicycle Camp For Children with Special Needs
 
Did you know that only 10% of children with Down syndrome and 20% of those with autism ever learn to ride a bike?


This camp will help teach up to 40 children with special needs how to ride a conventional bike without training wheels. We provide specialized  bicycle riding equipment developed by Rainbow Trainers, Inc., as well as a team of experts and volunteers.

Each child will attend one 75 minute session per day for five consecutive days. There will be 1-2 volunteers assisting the trainers with each child.

Our goal is to change the lives of children by teaching them a skill that will build self-confidence, provide inclusion with their peers and open the door to unlimited recreational opportunities. This program has an 85% success rate.
 
When:    July 26-July 30, 2010

Where:     North Charleston Convention Center     
                 5001 Coliseum Drive Charleston

Schedule:

Session A 8:30-9:45
Session B 10:00-11:15
Session C 11:30-12:45
Session D 1:45—3:00
Session E 3:15-4:30

Registration Fee:   $175
*  Majority of camp costs will be covered by grants and donations. Some scholarship money is available upon request.

IEP meeting prep

IEP meetings and such can really be a very intimidating and stressful time for parents/caregivers.  I have heard so many stories, and often can see the anxiety parents carry over IEP meetings, in particular.  That's not to say that they are all terrible, though.  I know many wonderful teachers who are very much invested in their sweet students, and come to meetings with their best interest in mind as well.  Sometimes, though, effective communication and general understanding of needs/goals/etc can be difficult. 

In searching the web on "IEP meeting tips/preparation", I found some good resources out there so be sure to do your research beforehand.  I came upon some video segments (which had checklists to accompany them), and was excited to suggest these as a resource for some of my parents UNTIL I realized that these were more geared toward and catered around laws and such that don't necessarily apply to our state.  So, be sure to make note of that in your own research to be sure the info is applicable to your area.

I do want to mention the option of having an advocate help you with preparation for meetings (and even to be present with you in the meeting).  Below is the name and contact information of an advocate I know of who recently presented on IEPs and advocacy at the same seminar which I was presenting (on Music Therapy for Children with Autism).  Kelly had lots of great pointers and tips (see below for some of those).  Kelly is advocate of one of my clients, actually, and my client's mother mentioned how great it was to have an advocate present in the IEP meeting (and in helping with preparation as well). 

Kelly L. Herrick, LPN, BS
(843) 330-2709
enchantedacreshorses@yahoo.com
(Kelly is also a pediatric nurse and director of the Exceptional Rider Program at Enchanted Acres)

Kelly's IEP tips:

• Request a draft of the IEP if possible (b/f the meeting)
• Request a copy of educational testing, data used to assist with the preparation of the IEP
• Be prepared! Be on time!
• Prepare an agenda that will address all of your concerns
• Compile a brief written list of items you would like the team to review.  Submit it to the appropriate school district representative in advance of the meeting
• Do not feel rushed to sign the IEP.  You can always take the IEP home to go over prior to signing it
• Read the minutes/summary notes and ensure they are correct
• Send a follow up letter stating all that you understood to be offered and request that IEP team notify you in writing if anything is incorrect
• Follow up!

I know it's the summertime, and it's nice to not have to think about IEPs for the moment, but this will help you when you begin IEP preparation during the school year  ... don't let it sneak up on you!

Jessica

Community Night

Hello to my Friends at Healing Farms - 

I just read the below message from your blog, and wanted to tell you that I was glad to be there with you all last Wednesday evening.  Thank you for inviting me to share some (somewhat improv) music therapy with you.  It was a massive group, yes, but it all worked out ;) You are a sweet group of people, offering something priceless to our friends who came.  I, also, was certainly grateful to have been able to get the attention of the majority of the group, considering the numbers! I loved seeing how excited and willing they all were to participate ... to see that sheer joy in some of their faces was beautiful.  It's pretty amazing ... the way that a group of volunteers and professionals are working together to provide something that will make these folks feel special, and they are the ones that make us feel special. 

I saw one of our friends at the Blessing of the Fleet this past weekend.  He recognized me, and came up to say hello.  He just seemed so happy, and that made me happy. 

Anyhow, thank you for a great experience, and keep doing what you are doing!
Jessica


Friday, May 14, 2010


As if it could get any better!


So, our first Community Night was amazing, who would have ever thought that it could be topped?! Learning a lesson from last month, when I saw 84 people registered I added 10 more to that number. Expecting a little less than 100 people, I set up the tables, chairs, lemonade etc.


Though we were a little short on volunteers due to illness, I still thought we'd have plenty of people to ensure that our guests enjoyed their time with us. Then 6:00 came...


by 6:30 the 4000 sq foot room was completely full. David said the blessing and added an extra prayer asking God to multiply the food! By 7:00 we had over 140 people eating, laughing, singing and enjoying the company of one another. When music therapist, Jessica Grooms arrived to lead the group in song, she quickly adjusted her agenda and (along with her helpers from CSU) somehow got the attention of the whole room.


We learned new songs, met new friends and had an awesome time.


Thank you to all of our wonderful volunteers for having open hearts, smiling faces and willing spirits! Join the fun next month, just let me know how many people to expect!
- Healing Farm Ministry

Upcoming Vday FREE Event for Families of Special Needs Children

Hello Friends,


I just wanted to pass this along for anyone who is interested. Seacoast Church is hosting a very special evening for families of children with special needs. They will be providing dinner (catered by Sticky Fingers) and fun on Sunday, February 14, and it's FREE! See below for more information or you may visit the website page at http://www.seacoast.org/Story.asp?storyid=1734
Jessica

_________________________________________________

The Luke 14 Banquet

Sunday, February 14th, 5:00 until 7:00

Seacoast Church in the Warehouse

750 Long Point Rd, Mt. Pleasant, SC 29464

In the Luke 14 story, while sitting at a dinner table in Jerusalem
and conversing with His host, Jesus said,

"when you give a banquet, invite the

poor, the crippled, the lame, the blind,
and you will be blessed. Go out to

the roads and country lanes and make them come in,
so that my house will be full. When one of those at the table
with Him heard this, he said to

Jesus, "Blessed are those who will eat at the feast
in the Kingdom of

God." Luke 14:13-23 NIV

In response, Seacoast Church and Healing Farm Ministries
will be partnering to host a Luke 14 Banquet
for families touched by a disability.

Please join us for free dinner and entertainment
to delight the whole family.

For more information on attending

this event or how you can serve the

families at this banquet, please

contact wandagilbert@seacoast.org

or click HERE to register

by February 7th

Our Sponsors:

The Tutterow Agency

The Kickin' Chicken/RPM Management

Kat's Famous

________________________________________________

Disability Etiquette

I attended a disability conference last weekend, and included in the packet of papers we all received was a Disability Etiquette form. It listed many great tips and points that I wanted to share.First and foremost ... "People with disabilities are not disabled people or handicapped people ... they are people who just happen to have a disability". They are people first. Do not identify them by their disability.

General Information

• Share a smile with the person, looking into their eyes. Don't get distracted by their wheelchair, crutches or disability.
• Always speak directly to the person who has a disability. Do not consider a companion or attendant to be a conversational go-between.
• Stand in front of the person who is disabled and try to be on their eye level. You may choose to kneel, especially if they are in a wheelchair, so they don't have to strain their neck.
• Don't hesitate to ask the person who has a disability if you can help him or her in any way. We all like to be offered help, but be OK if they decline your offer.
• Whenever possible, seat disabled persons with their families or friends.
• Don't ignore disabled people. Acknowledge their presence normally as you would anyone else, and attempt to include them in whatever activity you are doing. A warm smile and friendly conversation is very welcoming.
• Don't hesitate to use words like "see", "walk", "listen", etc., with disabled people.
• Touch is often a very effective communicator of love, concern and understanding.
• Use positive "people first" language when referring to disabilities, i.e. a person with a brain injury, a child with Down Syndrome, a person who uses a wheelchair, rather than using negative terms such as "crippled", "stricken", "afflicted", or "victims".

Visual Impairments

• When greeting person who has a visual impairment, be sure to identify yourself.
• Explain to a person who has a visual problem where things are located.
• If the person who is blind has a guide dog, ask how much room is needed. DO NOT PET SERVICE DOGS. THEY ARE ON DUTY!
• Offer a program to a person with a visual impairment (whether you think they can read it or not).
• Offer a braille or large-print document when available.
• Direct a person who is blind to his or her seat. Extend your elbow to guide; never grab or push. Give simple instructions, i.e. "go straight and then we will be turning right into your seat."
• Explain the program, if needed.

Hearing Impairments

• Speak clearly and slowly, but don't exaggerate or shout. (Sometimes it may be necessary to communicate in writing).
• Try to stand in front of the light source in order to provide a clear view of you face.
• Seat a hearing impaired person in an appropriate position in front of the sign language interpreter.
• Look directly at the person and speak expressively; remember your facial expressions, gestures, and body movements help in understanding. Just remember you don't need to be an expert in sign language to do this.

Mobility Impairments

• Wheelchair use provides freedom. Don't assume that using a wheelchair is in itself a tragedy. It is a means of freedom which allows the user to move about independently.
• A person who uses a wheelchair may be able to walk, but that person still needs the wheelchair. Try not to move the wheelchair or crutches out of reach of the person who uses them.
• Be respectful. A person's wheelchair is a part of his or her body space and should be treated with respect. Don't hold onto or lean on it unless you have the person's permission.
• Always ask the wheelchair user if he or she would like assistance before you help. It may be necessary for the person to give you some instructions. An unexpected push could throw the wheelchair user out of balance.
• If lifting a wheelchair, be sure to follow the person's instructions implicitly. They have been up and down the steps before. If there are any questions of your ability, look for stronger helpers.
• If you have a "wheelchair section", do not discourage the people from going on to the front or other stations with everyone else.

Developmental Disabilities

• If a mentally disabled person has behaviors which seem to be making people uncomfortable, have in mind some capable people who would be willing to share and "buddy" with them.
• Offer a program to a person you know is developmentally disabled, whether you think they can read it or not.

Hidden Disabilities

• Try to be aware of hidden disabilities or newly diagnosed or acquired illnesses such as multiple sclerosis, epilepsy, stroke, Parkinson's disease, environmental illness and emotional disabilities which may require assistance or attention.

There are many other resources that list other valuable tips on disability etiquette. Print and post such things in places which you see a need (offices, break rooms, rest rooms, your child's school halls/cafeteria, etc.)

Jessica

Music Therapy and Special Education

MUSIC THERAPY AND SPECIAL EDUCATION

* Music Therapy is considered a related service under the Individuals with Disabilities Education Act (IDEA).
* When music therapy is deemed necessary to assist a child benefit from his/her special education, goals are documented on the Individualized Education Program (IEP) as a related service intervention.
* Music therapy can be an integral component in helping the child with special needs attain educational goals identified by his/her IEP team.
* Music therapy interventions can address development in cognitive, behavioral, physical, emotional, and social skills. Music therapy can also facilitate development in communication and sensorimotor skills.
* Music therapy can offer direct or consultant services as determined by the individual needs of the child.
* Music therapists can support special education classroom teachers by providing effective ways to incorporate music into their academic curriculum.
* Music therapy involvement can stimulate attention and increase motivation to participate more fully in other aspects of the educational setting.
* Music therapy interventions apply the inherent order of music to set behavioral expectations, provide reassurance, and maintain structure for children with special needs.
* Music therapy can adapt strategies to encourage a child’s participation in the least restrictive environment.

-American Music Therapy Association, Inc.