A Parents Love

I have recently had the pleasure to contact and interview a mom who has a 2 year old son, both living here in Saudi Arabia who was diagnosed with Down Syndrome. Please read our conducted interview below. Leave comments of questions or concerns in the comment box below.

Mustafa :-)

What is your child’s name?

"Mustafa"

How old is Mustafa ?

"2"

What is Mustafa's diagnosis?

"Trisomy21 down syndrome"

When did you find out about Mustafa's child’s special needs?

"We found out after birth it was never suspected during pregnancy so it was a huge shock to me and my husband"

What challenges has your family faced since Mustafa's diagnosis?

"Our biggest challenge was accepting and coping and facing the fact that our son has Down Syndrome. Feeling different emotions from shock ,sadness ,denial, to accepting it and finally coping with it. As well as doing all we can for Mustafa to be the best he can be."

"The other challenge was our society. At first some advised us to not tell anyone that their is something wrong with our baby. They even advised me to get pregnant right away. Anyways I blame it on the lack of awareness in our country. I don't blame the people because I was like them. I had no idea what Down Syndrome was. I thought it meant retarded."

What kinds of support have been helpful for you? (family, teachers, friends etc.)

"Alhamdullilah our family and friends support to us was unconditional, they were and still are amazing with us and with Mustafa. At first they didn't know what down syndrome was so they all searched it online and gathered so many helpfull information and some talked to doctors ,Others read books ,watched DVD's. They all stood by us and I thank god for each and everyone of them. But our main support came from an amazing woman who works at the Help Center.  Her name is teacher Nahla. When I met her Mustafa was 2 weeks old and I was so broken. She helped me become a strong mother for Mustafa.  I owe her my life because she is the reason I am living a normal life with my husband and children."

If I were Mustafa's teacher, what advice would want to give me so that he has the best possible education?

{ I would tell you} "Deal with my son as you would deal with your own flesh and blood.With Passion and patience 

Teach him with passion and, help him accomplish his goals with patience."  

What other information would you like me to know about your child?

"Enrolling my son to Help center when he was 2 weeks old is the best decision my husband and I made. Well Mustafa is only 2 but he came a long way. When he was a baby his muscles were so weak. He couldn't lift his head. With care and physical therapy by the Help Center his muscles became stronger, and he's looking great now all his muscle tone is strong and very normal."

What other information would you like other people to know about your child?

"I would like people to take a very good look at my son. He is happy and healthy. As you can see Down Syndrome is not an illness, its a condition. He is just a baby with an extra chromosome. He behaves as other children his age.  He eats sleeps and plays like normal kids. I would like people to wipe away the negative info they have about Down Syndrome and look at the children that are taken care of by their parents. Look at the children that go through the early intervention programs." 

How do you view special education in Saudi Arabia, in the next 10 years?

"It still evolving we need stronger awareness."

Is Mustafa enrolled in any services? (centers, schools, daycares)

"In the Help Center, on Tahlia St {Jeddah}"

What are some of Mustafa’s interests?

"Music, cars, toys, books and the beach." 

In what ways have you educated yourself about Mustafa’s special need?

"The internet helped me a lot. I also bought books and DVD's.{ I also} Spoke to doctors.  

I like talking to parents that have children with special needs and learn from their experiences." 

Mustafa and his sisters :-)

Thank you Nada and family for your time :-)

Personal Insight: Williams Syndrome- "fighting for what she needs...."

This interview was done by a parent of a child who has been diagnosed with William Syndrome. Living in America,  this is  insight on their life, parent and child.

Tell us a little about yourself:  

I am a stay-at-home mother and teacher, who homeschools, cooks, cleans, and run my own business.  I have several children, and all of them have special needs in one way or another, although only one has been diagnosed.

Tell us a little about your darling and his or her diagnoses .  

My sweety was born with William's Syndrome, which is a genetic disorder that isn't hereditary (unless you already have it).  It comes from a random deletion in the 7th chromosome resulting in heart defects, kidney problems, learning disabilities, mild-moderate retardation, hypercalcemia, different facial characteristics, and a sleuth of other complications and interesting things.  She has heart and kidney disease, which causes her a lot of discomfort.  She is smaller than average, and probably won't do things as quickly as others or as smoothly as others.  People with William's Syndrome have an overly friendly personality and can be too trusting of dangerous situations or people.  She is delightful to have, although it get's very challenging because she gets stomach pains.  She is too young to be able to judge how she will be cognitively, but we will take each day as it comes.

How did the diagnosis come about? Were there difficulties with the diagnosis of your child's condition?  

She was tested in the NICU and I was called a few weeks later into the Pediatrician's office with the news.  There was shock initially, but I go with the flow.  It was already written.

How does your childs special need/s effect you and their daily lives?  

She sees many specialists monthly, get's blood drawn monthly, has colic, reflux, and other things going on.  It can be stressful, but the kids like to cater to her.  I have to keep her extra healthy because a cold for her could lead to other serious complications because of her heart condition.


Have you and your family gained any support from other family members or organizations?  

We have gained support from some organizations, but family is still a little slow to catch on that we need a little more support at times.

Are their services in your area who cater the needs of you and your family?  

We have occupational therapy, physical therapy, and a case manager to help navigate through the insurance world to make sure she gets what she needs.

Are you an active advocate for your child? How so?  

I fight for what she needs when others lose sight.  I am her advocate, and I pray I can continue to be as long as we both live.

Do you have any advice to give to others who may be going through the same as you and your family? 

 Turn to Allah, ask for help, ask for resources, educate yourself and your family, and give each child your absolute  best.  They are a loan to us, so we have to make sure we treat them in accordance to what they need.

Last but not least, how did you find out about I am Special With Needs!? 

I found out about it from a support group online.

Additional information (a few facts) on Williams Syndrome is in a link below...please go and read about it!


http://www.thespeciallife.com/williams-syndrome.html

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.