Kleine - Levin Syndrome (Sleeping Beauty Syndrome)

Below is an article (in English) about a teenage girl who suffers from what is nicknamed "Sleeping Beauty Syndrome". It is a neurological disorder that causes one to sleep for long periods of time (reported cases say up to 8 weeks) and also causes Jekell and Hyde personality changes.

http://www.dailymail.co.uk/health/article-2285208/Sleeping-Beauty-syndrome-teenager-Lois-Woods-snoozes-44-DAYS-time.html

Additionally, there is an article from "Time" magazine about the disorder and treatments for it.

http://healthland.time.com/2012/11/23/new-treatment-for-sleeping-beauty-syndrome/

Homeschooling and The Special Needs Child

Homeschooling everywhere is starting to become a household favorite as more and more parents tend to opt for it as there child's form of education. It is hard to find good, quality education and more so when finding education for a child with special needs.

With rise of abuse by teachers and pupils alike and unjust treatment of children with special needs while in school, parents are now slowly looking into other ways of educating their children. Homeschooling has become "that way". There are many curriculums out there that cater to the needs of special needs children's education style. There are also other curriculums that are not tailored for special needs children, but can be modified to fit their needs.

There are quiet a few families in Saudi Arabia who have opted for Homeschooling for their special needs child. This largely has to do with the unsatisfactory degree of education that takes place here. In addition to the small amount of qualified special education or quality teachers that exist here.

With homeschooling, parents have control over what the child is learning. They also have control over who is present and who is teaching it. Though parents sometimes feel they don't have the time or they don't know how, homeschooling doesn't require you to have prior knowledge about your child's grade level. Most if not all of the curriculums you would follow have instructions or an outline for you to follow. Or there is also the option of you making your own curriculum. Though this may take time to figure out it may be the better option as you would know how your child learns.

There are also options for a homeschool teacher to come to your home and teach your child. Helping Hands offers the option of a teacher coming to your home and teaching your special needs child. Just like being in a traditional school, but being educated in the home with books and supplies that are supplied by Helping Hands.

Inclusive Education....is it that bad??

Educating children with special needs alongside their "typical" needs peers has been an issue circulating the education field. I personally, can see the pro's and con's of it as I worked in Inclusive settings for 6 years.  Would you all share what you feel are some pro's and con's of Inclusive Education....I would like to hear others views :-)

Special Needs Alert

Wouldn't it be a good idea if some sort of alert was established for children with special needs here in Saudi? For example, A child with Autism goes missing. How would we be able to find him or her? What if he or she is non-verbal and isn't able to talk? How would they tell a stranger what their name is or who their mom and dad is? Maybe by having something similar to an Amber Alert (which is a system in America used for children who have gone missing) put in place could make thin a little easier for parents.

Some children with Autism may not understand the dangers that could happen to them, therefore, break away from the family or group out of complete curiosity . But if the child doesn't have like a name bracelet or any type of identification on him or her then no one would know what family they belong too. I know this may seem like a foreign concept to people living here in the Kingdom, but I think its something that could be put in place by a Prince, overseen by a Ministry. (Am I getting a little too ahead of myself?)

Mention this idea to people you know, I will do so as well. Being that everything is done by word of mouth here anyway, this idea may reach the right people, and Allahu Alim, before we know it, it could be a country wide thing!

(Just a little reminder)

Is it just me or does no one care about children with special needs?

For the past few weeks I have been out-n-about continuing with my special needs awareness project. I have gone to a few international schools, institutes, stores and other centers who cater to children with special needs. I have met many nice people through it all Mashallah. People who care about these children and their families, people who have put forth quality time to educate others. I have also come across people who don't care one bit and then those who say they care, but their physical actions don't show it. All this puts a bad taste in my mouth!

I started thinking that maybe its because I'm from America, my outlook about special education or children with special needs differs from other peoples outlook. Programs, organizations who create awareness programs and  people in the field of special education aim towards helping those with special needs.  I have come across people (of multiple nationalities) who aren't affected by this topic at all. It seems if the person doesn't work in the field (and even some who work in the field don't seem to be effected) or have a family member with special needs.... they could care less.


Though I have no intentions of letting this deter me from my purpose, it is a little disappointing. For some reason I was expecting people, especially those already in the field to be interested in making a difference. Well I am going to keep doing what I was doing and hopefully, by Allah's will, make a difference in the society here. Helping Hands Special Needs Awareness Project continues....

Autism....If you didn't know

Being that Autism Awareness Month is coming to a close, I wanted to use this time to point out a few facts about Autism. Most of these facts will be well known facts, others may be new to you. Please pass on any information about Autism to someone who may need it. Please don't assume everyone knows about Autism. We still have a lot of awareness to bring forth:

- Autism is the fastest growing developmental delay in the United States.

- Early Intervention is the best option for young children with Autism (ages 0-5).

- Children with Autism usually have social/ communication difficulties.

- Autism is commonly diagnosed in children between the ages of 2 and 3.

- Autism is referred to as a spectrum disorder because the symptoms vary. All children with Autism don't experience the same symptoms.

- Researchers have been searching for a long time but the fact remains, no one has found the cause for Autism.

- Boys are more commonly diagnosed with Autism than girls

- Centers for Disease, Control and Prevention estimates about 1 out of 150 children have Autism.

Let's create an awareness for Autism and other special needs!

What is a Home Visitor?

An (educational) Home Visitor is a professional who comes to your home to work with you and your child to meet educational needs. Home Visitors are usually experienced in family interactions and are skilled in knowing how to meet your needs. Home Visitors are commonly outsourced from an agency or company in which they are given a schedule of different families to meet.

One of the unique strengths of a Home Visitor is the way they are able to interact with families and meet the goals of the family. Being that no one family is the same it is the responsibility of the Specialist or Home Visitor to tailor to the families specific needs.   Home Visitors improve interactions between the parent and child. They promote healthy growth and development and works toward the success of the child and the family on a whole.

Helping Hands Support Services model the Home Visitor technique. Offering 7 services,there are specialists who come to the home of the family to work with the child and family. Helping Hands Specialists work specifically with children who have special needs. Needs that consist of therapy, interventions,specialized instruction, etc. The activities  are developmentally appropriate and  meet the specific needs of the child and family. Children with Down Syndrome, Autism, Learning disabilities and others are welcomed to enroll. Families can expect specialists to be caring, hard working and willing to make a difference by using professional methods and research based activities.

To inquire please contact Helping Hands at helpinghandsep@gmail.com or visit the Helping Hands Support Services tab on this blog.

World Down Syndrome Day in Haiffa Mall

Yesterday, at the Haifa Mall in Jeddah was a World Down Syndrome program sponsered by Princess Al- Jawhara Center of Excellence in Research of Hereditary Disorders. For the program (which was set-up inside the mall) were booths set up from different companies, schools and programs who cater to children with special needs particularly children with Down Syndrome.

Booth's from Help Center were set-up. At this booth they explained they were looking for used iphones, ipads and ipod's available for donation. A booth from a place I had never heard of was set-up named "Get Smart Center". I was told they are a center gearded towards children with behavioral  problems.  I am very interested in going to check out the center.

There was a nice turn out of people at the function. Parents of children with Down Syndrome, as well as special educators and community citizens.

This is a photo of children and adults with special needs taken at the program.

Like Me Like You Series

Today I went to Obeikan Bookstore looking for children's books and came across a series called "Like Me Like You" by Jillian Powell, published by Evans Books publishing company based in the U.K.

The series of books are about different children who have special needs. Special needs like Down's Syndrome, Asthma, Hearing loss etc. The first book of the series I saw on the shelf at the bookstore was "Like Me Like You, Luke has Down's Syndrome". I thought wow this is an interesting topic, let me open it up and read inside.....I feel in love with it. When I looked up again I saw, "Like Me Like You, Thomas has Autism". I said to myself I got to get these books. I then looked on the back of the books to see if it was a series and sure enough it was....a series of 8 books.

Needless to say I purchased the whole series, except 1 because it was not in stock. I recommend that you (my blog readers) get a hold of these books and have your special needs children read them, have your typical-needs children read them, friends and family members who may be in the dark about children with disabilities. The books are easy to follow and have pictures of the children whom the story is talking about.

There is a link below to check out the books via Amazon.com
http://www.amazon.co.uk/Thomas-has-Autism-Like-You/dp/0237530333

Professional Insight : Hope for Exceptional Needs

Hope for Exceptional Needs founder and director, Uzma Raheem agreed to a short interview with me for viewers of I am Special With Needs! YAAAY :-)


With this center being "the FIRST and ONLY" multi lingual center in Saudi Arabia and one of the older locations who cater to children who have special needs in Saudi, I felt this interview had to be done.

During the interview I got the chance to ask questions that were important to me and would be insightful and beneficial for parents as well as educators in the field of special education here in Saudi Arabia. Below are the questions asked and answered. If you feel you need anymore information, please contact Ms. Raheem and Hope For Exceptional Needs Rehabilitation Center using the contact information in "Services and Locations" tab.


How do you get the families involved in the center?


Ms. Raheem: " I have a very strict policy, we want the parents involvment".... "We have a communication guide that has everything in it".....  toliet training and even a behavior tracking sheet is attached....  parents should sign homework, all of these are marked daily .... "If there is a parent who is not involved more than 50% of the time they are given a first warning, second warning and after the third warning the space is given to someone else....what needs to be done is to have 2 parents involved with the special needs child"....


How long has your center been open?


Ms. Raheem: "14 years"


What have you or your center done to create awarness about special needs children?


Ms. Raheem: " When we have a workshop we dont charge people for it, we just hire a specialist then we send out flyers to schools and if the schools want there teachers to attend we invite them... we cant hold them on a regular basis because we don't have the funds...as of yet!"


What type of specialists are working at the center?


 Ms. Raheem: we have divided the services into 3 groups... the therapies, the specials and then the key skill areas.... physiotherapits, occupational therapists, speech and language pathology, hydro therapy and hippotherapy....  apart from that we have special arts which includeds religious studies which is optional then we have vocational training, like computers, arts and crafts and sports......


What about your outlook on special needs services here in Saudi Arabia, do you think the field is evolving, are you seeing more services or is it staying the same?


Ms. Raheem: " It has evolved tremendously. but unfortunelty people like occupational therapists, it seems there are none out there. Getting a visa for them (occupational therapists) is so difficult right now and finding them is difficult too unless they are in a hospital....so centers like ours are going to suffer....those services are scarce and there are a lack of professionals...... and lack of professionalism."


How do you feel about professionals in this particular field?


Ms. Raheem: As the days go Im seeing less and less profesional attitudes from people....."


Walk me through a day with you as the director at the center.


Ms. Raheem: from the time I walk in  I have to make sure all the children are safe inside the center....being that we are pressed for time {throughout the day} I have to make sure we stick to our daily schedule.....I usually have interviews lined up, I have parents coming in for advise, new parents coming in for us to take in the child....this is a very difficult job and a very challenging job but the kids have made it so easy for me to continue.


What are the ages of the children  you serve at the center?


 Ms. Raheem: "the children range from 2 months old and the oldest girl is 26 and our oldest boy is 14"


Fund raisers and tuition, do you take donations?


Ms. Raheem: " we are not allowed to ask for donations.....if someone comes into the center to give to us we can take it"..... "the tuition is supposed to be 30,000 SR per year, {only a few families are paying this} but we end up taking the fee's according to what the parent is making for income..... 40% of the children are going for free because the parents can not afford it.


This was a very insightful interview, interesting and informative as well. Thank you very Much Mrs. Raheem for providing myself and the readers of I am Special With Needs with information about you and your center.  




















  

Sign Language

http://www.saudigazette.com.sa/index.cfm?method=home.regcon&contentID=2010031966804

This article is a little old but speaks about the usage of Sign language and the training program available. I actually wonder how different American Sign Lanuage is from the sign language used in Saudi.

Handicapped Accessible Everything in Saudi Arabia

I think Saudi Arabia would be an easier country for disabled people to live in if things were a little more accessible to people with disabilities. Things like those below can help make KSA a more disability-friendly place:

• Lowered sidewalks
• Wheelchair ramps built for wheelchair users
• More elevators in business establishments
• Parking spaces near front entrances of stores and malls 
• Vehicles (specifically mini vans) available for sale with electronic levers to help the wheelchair user get into the car easier
• Handicap accessible public bathrooms

Come on Saudi you can do it!

Testing genetic disorders in newborns in Bahrain

This link is an article about genetic testing of newborns in Bahrain. This test has already been implemented in Saudi but is new to Bahrain.

The newborn baby will be tested for up to 50 genetic disorders. This should help with early detection and getting the child early intervention services that can help with the childs future development.

http://www.gulf-daily-news.com/NewsDetails.aspx?storyid=318649

Applied Behavioral Analysis (ABA)

Applied behavioral Analysis (also known as ABA) is a philosophy of a clear and systematic approach to describe, observe and measure behavior.  With the use of psychological and educational techniques, this approach is individualized and is applied to each individual child differently.

ABA is best known for treating children with Autism and other developmental disabilities, to minimize behavioral disorders and behavioral symptoms, however, ABA can also be used as an intervention to help people in areas including:

AIDS prevention

Parenting

Education

Medical procedures

Language acquisition

Severe mental disorders

In Applied Behavioral Analysis programs, the intention of the care giver is to increase skills in language, play, and socialization, while minimizing the behaviors that get in the child’s way of learning.  This is done by teaching the child the skills they need to learn from their natural environment. First, the caregiver has to identify the specific behaviors, and then by the ABA approach modify/reduce the behaviors of the child that are inappropriate.

There are different types of ABA approaches. Some approaches include:

Discrete Trial Training (DTT) which is a series of repeated lessons taught one- on-one. This approach encourages motivation of the child by rewarding certain positive behaviors.

Pivotal Response Training (PRT) instead of targeting all behaviors at one time ABA therapists focuses on behaviors that can lead to improvements in other areas of behaviors.

Picture Exchange Communication System (PECS) I personally am familiar with this approach, this teaches children who lack language skills to communicate with other people by giving a picture of a desired item to a partner. Later and after much practice, this evolves into forming sentences and conversations.

Combined Intervention this includes blending all these before mentioned approaches together. This can also be beneficial for the child, being that every child learns differently.

Ultimately, what works for the child is to be determined between the parents and the interventionists.

In Jeddah, Saudi Arabia Jeddah Institute for Speech and Hearing (JISH) offers individualized services in Applied Behavioral Analysis.  

To inquire, here is the contact info:

Telephone (00966 2) 6675311

Fax number (00966 2) 6675233

e-mail us: jish@jish.com.sa