HAPPY THANKSGIVING!

thanksgiving

November is Epilepsy Month!

EFGA-Facts-Infographic

Over 30 Online Resources on Rett Syndrome

 

rett-syndrome logo
So much has been written on the subject of Autism, but how much do you know about Rett Syndrome? This disorder fall under the autism spectrum disorder category due to similar traits and characteristics.

Rett Syndrome is a neuro-developmental rare disorder that affects primarily girls. Discovered by Andreas Rett who described the symptoms as wasting and slow growth. Rett Syndrome is rare and occurs in 1 out of 23,000 births. The disorder consists of four stages:
Stage 1: Generally begins between the ages of 6 and 18 months. Gross motor skills begin to slow down and stagnates
Stage 2: Between the age of 1 and 3 years, will regress and lose any skills that were previous acquired.
Stage 3: During this stage, apaxia becomes apparent. Seizures become common and gross motor skills deteriorate.
Stage 4. Loses all gross motor skills and generally uses a wheelchair.

Symptoms

  • Difficulty in coordination
  • Loss of communication skills
  • Dyspraxia
  • Severe motor disabilities
  • Abnormal hand movement
  • Breathing abnormalities
  • Cold hands and feet
  • Apraxia
Similar in Autism Characteristics include:
  • Screaming
  • Crying
  • Hyperventilation
  • Lack of eye contact
Similarities in cerebral palsy include:
  • Hypotonia
  • Gait difficulties
  • Spasticity
  • Teeth-grinding

Medical Sites

Boston Children’s Hospital
Cleveland Clinic
Mayo Clinic
MedicineNet.com
Medscape
National Institute of Neurological Disorders and Strokes
National Organization for Rare Disorder
Science Daily
WebMD
Wikipedia

Organizations and Foundations

Girl Power 2 Cure
Kate Foundation
New Jersey Rett Syndrome Association
Northwest Rett Syndrome Foundation
Rett Syndrome.org
Southeastern Rett Syndrome Alliance

Twitter

Rett Girl
Rett Syndrome GP2C
Rett Syndrome News
Rett UK

Facebook

Cure Rett
Ontario Rett Syndrome Association
Rett Syndrome of Ireland

Blogs

Grace for Rett
Jessica’s Journey with Rett Syndrome
Living with Rett Syndrome
My Silent Angel’s Fight

Teaching Strategies

ACC for Children Who Have Rett Syndrome
Multi-Model Communication Strategies
Rett Syndrome: Teacher Tools
Some Rett Syndrome Tips

You Tube Video’s

Happy 1 Year Blog Anniversary!

one year anniversay

 

Wow! Time really does fly. It is so hard to believe that it has been one year since I began this blog. Well officially On September 25th, but why not start the celebration early right? During the past year, I have written 102 articles which averages to about 2 a week. Not too bad huh?

I started this blog as a way of giving back to a career which has given me so much joy.. Helping people disabilities, families, professionals and organizations. Working as both a speaker and a trainer in the developmental disability field I have collected loads of information pertaining to special education, special needs, and developmental disability topics and felt the time was right to share. My other purpose in creating Special Needs Resource Blog was realizing that most blogs and social media sites were created mainly from parents and special education teachers. It truly saddens me that in the year 2015, parents are still struggling to locate services and information on their own.

My other passion and joy is learning and sharing information with others. My vision for upcoming year to continue to share resources, expand and gather additional information. In the upcoming year, I will have a page for free items including templates that can be duplicated.

In celebrating Special resources 1 year anniversary, I am raffling off a few items. All are welcome to participate.

autims.magnet

Autism Car Magnet

Autism Earrings

Autism Earrings

Autism Lanyard

Autism Lanyard

Rules

  1. Contest is open to both international and domestic visitors
  2. Contest is open from September 11th to September 25th
  3. I only request that you follow me. You can follow my Twitter, Google+, Facebook Like or this blog.
  4. winner must have a valid email address. Failure to respond within 72 hours will result in a new winner being chosen.

Thanks again for all of your support and feel free to contact me.

 

logo

 

Pick-Up Sticks as a Training Activity for Staff

Click here for printed copy

STICKSLOGO

During my trainings, I often incorporate games that help staff understand from the point of view of a person with a disability. This is a fun and simple game

Providing ongoing sensitivity training for staff working with children with special needs and adults with developmental disabilities on a regular basis lessens the risk of staff losing sight of the specific needs of each person. One game that is fun and also allows participants to reflect is an old fashion game of pick-up sticks. This game has been around for centuries and is both inexpensive and fun. This game can be conducted during staff meetings or your next staff development day.

Purpose: Enhance staff sensitivity towards people with disabilities, specifically fine-motor skills, cerebral palsy, eye-hand coordination, intellectual disabilities and learning disabilities.

Learning Objectives: As a result of this training

Instructions: Participants will grab all of the sticks and quickly release his/her hand and allows the sticks to scatter. Each participant will proceed to pick up the stick one by one using the black stick with the non-dominant hand. If any of the sticks move, the game stops and the next person will attempt to pick up all the sticks.

  • Once the game is completed, Time should be given to discuss and reflect on the activity.
  • ask the participants how they felt.
  • Some of the feelings the presenter wants to encourage includes, frustration, slow, anger, and hopelessness.
  • Ask- What was the purpose of this exercise.
  • Some answers should include, to improve of understanding of what others are going through.
  • Discussion should include next steps including, increasing patience

Length of Training Session: 60 Minutes

Recommended Number of Participants: 3-15 people

Time: Allow each person 3 minutes to complete the task.

Materials: Pick- up sticks, timer

 

I purchases my sticks at a local stationary store however you can also purchase the pick-up sticks online. check out the resources below:

Resources

Century Novelty– $5.95
Jet.com-$5.52
S & S Worldwide – $5.49

Childhood Disintegrative Disorder Resources

Childhooddd

Childhood disintegrative disorder (CDD), also known as Heller’s Syndrome is a developmental disorder that is characterized by aggression of previously acquired skills such as language and social abilities. Symptoms include:

  • Lack of play
  • Loss of motor skills
  • Loss of social skills
  • Delay in language

The following resources provide an overview of Childhood disintegrative disorder including prevalence, symptoms, diagnosis, and treatment.

Encyclopedia of Mental Disorders
Mayo Clinic
Medline Plus
WebMD
Wikipedia

Books

The Blessing of Autism: one family’s journey through childhood disintegrative disorder

When Autism Strikes: Families Cope with Childhood Disintegrative Disorder

 

Aicardi Syndrome Resources

aicardi syndrome ribbon

Aicardi Syndrome is a rare genetic disorder that occurs in 1 in 105,000 to 167,000 newborns in the United States and occurs exclusively in females. People with Aicardi Syndrome often have undeveloped tissue which connects the let and right halves of the brain. For additional information, click on the links below.

Medical Sites

eMedicine
Genetics Home Reference
National Organizations for Rare Disorders
WebMD
Wikipedia

Foundation

Aicardi Syndrome Foundation

 

You’ll grow to love that extra chromosome! 

If only I could go back to the day our daughter was born. There’s so much I’d say to comfort myself. Hopefully, I’ll eventually help someone else at the start of their journey. I want someone to see that everything is going to be alright! You’ll survive this storm of emotions! Your baby isn’t the baby you dreamed of but I’m here to say your precious baby will be so much more than you could ever imagine!

Continue reading You’ll grow to love that extra chromosome! .

Echolalia Resources

You many have heard the term “echolalia.” it is often associated with people diagnosed with autism and is characterized as the repetition of words that may be immediate or delayed after the original words are spoken. For additional information, please click on the links below:

About Health
Medicine Net
Musing of an Aspie
Special Education Services
Teach Me To Talk
 Wikipedia

Warm Weather Precautions Resources

As the summer begins to heat up, now is the time to put warm weather and safety precautions into place. Children and adults with disabilities should:

  • Drink plenty of fluids
  • Use an air conditioner when possible
  • Take a cool bath or shower
  • Wear loose fitting clothing

For additional information click on the link below:

Extreme Heat and Health Problems- Disabled World
Health and Safety Alert- Ohio Department of Developmental Disabilities
Health and Safety Alert for Caregivers of Individuals with Developmental Disabilities- New Jersey Department of Human Services
Hot Weather Tips- Family Caregiver Alliance
Summer Safety Precautions- New York Office of People with Developmental Disabilities (download PDF)
Three Ways Weather Affects People with Disabilities- Essential Accessibility