Zara

They say that there are never any coincidences in life, and with that I am taken back to the moment I met Gulshan Kavarana at Mawaheb for Beautiful People when I was in the very early stages of this project.

During our interview she jokes "You were all over the place.  You had no idea where you were going.  I was trying to figure out what this girl was trying to achieve!"

Gulshan is right.  

I turned up at Mawaheb to meet some of the students.  I knew I wanted to tell their stories, but I was sitting in my own fears of self doubt and unworthiness, thinking I would not be able to tell such valuable stories and do them justice.  

And so, we met, and I left, and the project was still a figment of my imagination until 6 months later when I finally took the leap.

I'm so glad we had that meeting, and have been so lucky to have had many other interactions with Gulshan since that time, although none have been quite as intimate and soul baring as this interview.

We share the common bond of caring for a child with special needs, and yet this is the first time I had heard Zara's full story.

Please sit down, grab a cup of tea and stay awhile. The images themselves tell one of the most honest stories I've captured yet.

1)Tell us a bit about your family.

Gulshan- We are a family of 4. I have 2 daughters aged 26 (Jenai) and 19 (Zara). I was pregnant with Zara when we moved to Dubai 19 years ago. Everyone said Zara would be my lucky child, and I really felt like that throughout the pregnancy. There was a nagging thought that she might have Down Syndrome and though I love being with children with DS, I didn't want one of my own. I prayed to God to give me a normal child and in return I will work with people with disabilities for the rest of my life. To stop my nagging thought I asked "please give me a Sick child over a child with Down Syndrome" and then the feeling went away.

Zara was born normal and healthy. I held up my end of the bargain and went to volunteer at Dubai centre for special needs. The first day I started a girl had a seizure, and I walked out thinking "How does her mother cope with something like this?".

Four months later it was our turn when Zara had her first seizure after getting her DPT shot. The seizures continued to this day. They started as 10 to 15 a day, some lasting an hour long. At the age of 6 mos, Zara was diagnosed with SMEI (severe myoclonus epilepsy in infancy), and at 12 she was confirmed to have Dravet Syndrome. There are 40 types of seizures, Dravet is the least common. Zara is severely affected by it. With each seizure her condition gets progressively worse. Seizures can cause SIDS as all of the seizures occur when she is asleep which means that she still sleeps in our room even though she is 19 years old. Zara also has sensitivity to heat. Zara has one to two full blown seizures per week.

Zeheer- in the beginning she had seizures but she was normal. She was hitting her milestones. She had a few words and a lot of understanding. I didn't realise the effect the seizures would have. Zara started out in s mainstream nursery and was doing well. She was on medication to control the seizures. At the age of 3 she had a lot of seizures, which we started to notice the regression of her development. In the beginning she would regain full function after seizures but after some time we realized the seizures were causing brain damage. Zara lost her speech and ability to walk. She walks now, but had to learn again with the help of an amazing therapist named Saif Bijliwala. She used to dance, run, and be very active.

With Dravet syndrome, her physical and mental condition regressed. The cocktail of medications caused her to be in a drugged state. I feel she is trapped in her body. She feels pain but it is difficult to communicate this to us.

2)What has been your biggest challenge with living with Dravet Syndrome?

Gulshan- Life is unpredictable. One moment she is fine, the next moment she can have a seizure and we have to change any plans we may have.

After a seizure Zara cannot sleep, even if we try to put her back to bed she will walk around the house delirious. This means one of us has to get up and walk with her so she doesn't hurt herself. This can continue for at least and hour if not more before she can go back to bed.

We have experienced thousands of seizures to date but no matter how many we go through, it is always frightening.

I have wished and prayed for her to release and "go" in the middle of a seizure.

There is no spontaneity in our lives. Zeheer changes Zara's nappies and showers her as she is too big for me to carry.

Zeheer- Wherever we go we have to take Zara's needs into consideration and adapt to her pace.

I always thought Zara would be like her sister Jenai but dreams are one thing and reality is another . You are always in the hope and seizures will stop and she would make some progress . It would be slow but at least you hope it would be steady. I always thought she would finish school and have an independent life. In reality all of her daily living activities have to be met.

3) What is Zara's biggest gift.

Gulshan- She has taught me unconditional love and resilience. I really found it hard to love her when she started to regress. I was not her mother, I was her nurse. I had an "aha" moment which changed this. It was one sentience. Someone said to me "You are in a difficult situation". I felt a weight lift off of me. It was the acknowledgement of my personal situation that made me accept the situation .

Zeheer- She has given me a deeper sense of connection.

4) You are both from India and were brought up as Zoro Astrians. How did your beliefs influence Zara's upbringing?

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Gulshan- Before I accepted Zara for who she was I prayed out of fear. Now I don't pray in the same way. I have conversations with God.
My beliefs then shifted to everything happens for a reason. There is not much point asking questions because there are no answers.

5) Your eldest daughter Jenai lives and works in Mumbai. Tell us about the bond between your daughters.

Jenai has a boyfriend, Byram. They had a conversation a few years ago where he said that Zara would always live with them in case something happened to us. Jenai broke down and cried because she would never have asked him this but this was truly what she wished for. We've never suggested that Zara would be her responsibility. Last winter for 2 months, the girls were in India together without us. Jenai had full responsibility of her sisters care. Zara was included in everything they did together, not because they had to but because they wanted to.

6) You have run a support group called SFS (Special Families Support) for the past 16years. You are also a full time art mentor at Mawaheb For Beautiful People. What drives you to continue doing this?

There have been times when I have asked myself Why am I doing this? I take on a lot sometimes to benefit and support other people's children. I do what I do because I can't do it for my own child.

Through SFS and Mawaheb I connect dots.

7)What do you want the world about Zara?

Gulshan - I always say she is an angel with a broken wing. She has come to earth to rest and heal until she goes back.

Zaheer- Through Zara's silence she works through Gulshan .

Thank you for bearing your heart and soul Gulshan and Zeheer. You are both most extraordinary parents!

All images and content are copyright of Stephanie Hamilton of Nektar.

‪#‎iamme‬ ‪#‎iammostextraordinary‬

Sara

With every story I am privileged to tell, I feel more and more grateful for the connections. To sit and watch a parent relive the heartache and joy that makes their story so unique is both intimate, and life changing.

I first met Diala when she introduced herself to me at the Accessabilties Expo. Her introduction was so clear and full of purpose. "I came here to see you today. I want to tell my daughter's story. She has Spina Bifida."

When you meet someone like Diala, you instantly know where you stand. She is the type of person who doesn't wear a mask and is straight as an arrow in letting you know her intentions. Her smile is warm, and her eyes are filled with determination. We didn't get to chat much at the Expo as it was so busy. Our connection was very brief, but it was the kind where not many words are needed.

Fast forward weeks later, and I find myself greeted at Diala's door by Sara enthusiastically ushering me in. It was the kind of greeting you would expect from an adult, and not a 3 year old. Articulate, and full of energy, I was excited to learn more about this extraordinary girl!

Diala and her husband Jad have lived in Dubai for the past 8 years, although from 2012 to 2015 Diala lived in Lebanon with Sara, as the medical care there was more specialised for children with Spina Bifida. The couple have two beautiful girls, Sara 3, and Thea who is 17 months old.

Pay close attention as Diala has big dreams to make her daughter's right to accessible play a reality!

1) Tell me a bit about your pregnancy with Sara.

It took me 7 years to get pregnant. At 12 weeks they discovered Sara is was not growing in the amniotic sac, but she was growing in a cavity. We continued to monitor the pregnancy week by week, and she continued to grow. At 35 weeks and 2kgs, the Dr suggested we deliver by C-section.

During the birth my biggest wish was to hear her cry. After she was born, I heard the word Spina Bifida. I had never heard this term. I thought it was a medication that she could be given and she would be ok. The next morning I started to google on my phone about Spina Bifida. My parents had received the diagnosis before me. It wasn't long after my Paediatrician delivered the diagnosis of Spina Bifida with clubbed feet. At noon I wanted to go and check my baby.

There are different types of Spina Bifida. In our case, Sara has lipomeningocele which is a closed Neural Tube Defect (NTD) meaning she has a lump in the sacral region located on the spine. All her spinal nerves are located in the neural mass which is covered by skin.

I saw several specialists in a very short time. My Neurologist told me not to check the Internet as cases are so different. Each case is like a snowflake, no two are alike.

2) What has been your biggest challenge in this journey?

There is no Spina Bifida support group or centre in the Middle East region so we have had to continually fit the pieces of the puzzle together. We have spent countless hours educating ourselves about Spina Bifida to give Sara the best life we can. We have consulted experts worldwide to be sure we are doing the right thing. Financially it can be a very big load to carry.

For the first year and a half of Sara's life we had to change her cast weekly. She had full casts on both legs. People would often look and some would ask 'How did you drop her?'. This made me angry and frustrated at first, but over time I used it as an opportunity to educate them about Sara's condition.

If I want to take Sara to a playground she can't use her walker to access most of the playground. There are no swings with support and there is often sand near the equipment so she can't push her walker there.

Sometimes educating people can be challenging. I'm always willing to explain about her condition to anyone. For example she was wearing her uniform where her splints on her legs are visible. One of the kids asked her mom 'What's that?' The mum seemed very embarrassed, so I took it as an opportunity to educate. I told Sara "When you see your friend at school go and tell your friends about your splints, that they are special legs to help you to walk."

3) What is Sara's biggest gift?

She is a social butterfly. She is super active, smart, and has a big personality. She has a real presence. Sara is the one leading us on this journey. She is very grown up. She is very curious about everything.

4) What have been your biggest fears?

Worrying comes in stages. My first biggest question was 'Will she walk?'. After that, when she started school I had fears around her safety, if she would make friends, and how other people would look at her.

It's amazing that Sara's classmates at the age of 3 now understand that Sara is Sara. They also respect not to touch her walker which is amazing for 3 year olds!

Sara's shadow nurse told me that she overheard Sara telling her classmate "This is baby Rori"( her name for her walker or rollator) and I use it for my special legs."

5) What would you like to see in Dubai?

I have a dream to build an all abilities playground.

6) What you like the world to know about Sara?

We want people to treat Sara normally and approach her. Please don't pity us, this never helps.

We don't want special treatment for Sara.

We want her to be independent. It feels good when people are genuinely interested in learning about her condition.

Thank you Diala and Sara for allowing us into your world! If anyone would like to help Diala make her dream of building an "All abilities" playground a reality, please feel free to get in touch and we'll connect you! Please SHARE to help make this dream and vision a reality!

Georgina

It gives me great pleasure to introduce another extraordinary person that I had the privilege to sit down and get to know better.

Georgina Corley is an artist, dancer, and all round beautiful person. I first met Georgina just after giving birth to my daughter Ruby with Down Syndrome. As her mother Rebecca is the founder of All 4 Down Syndrome Dubai she was my first point of contact into the world of DS all those years ago.

I still remember coming to her home with Ruby in her baby seat and watching from afar as Georgina ran around the house (she must have been about 7). I was curious to know what life was like with a child with DS, but of course the only way to really know what it was like as to live the experience for myself with my own daughter.

Georgina has grown into a delightful young woman as you can see. Thank you both to Georgina, and her mother Rebecca for sharing your thoughts with us.

Georgina's Interview

1)Tell me about yourself

I am Georgina. My middle name is Mary. I am 17 and my birthday is April 28th. I like to be Independant, I like to paint. I love dancing with people. My favorite color is gold. I love working with colors.

2) What can you tell me about Down Syndrome?

Down syndrome makes me different. There is a walk at the park with lots of people with Special needs. There are balloons and we wear a special t- shirt. My mom helps people by talking about Down Syndrome.

3) What is your biggest gift?

The best thing about me is my painting and sketching. My heart keeps me alive.

4) What is your biggest challenge?

In Mawaheb I used to think to cut the string was difficult. I was wearing gloves. Cycling is difficult. It's hard to balance.

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5) What is your biggest dream?

I dream about my mom cooking with me. I would like to work with her in the kitchen. I want to be a sailing instructor.

6) What scares you?

Some movies.

7) If you were famous, what would you want the world to know about you?

I'm an artist. I would tell people to come to Mawaheb to see my work.

I love to meet everybody.

I like to work with people in a team. I feel happy and excited and am enjoying myself. I am joy.

Thank you Georgina!! For those of you who aren't aware, Georgina is speaking about the upcoming World Down Syndrome Day Buddy Walk which is held yearly through All 4 Down Syndrome Dubai. The walk will take place at Zabeel park in the 3rd week in March. Please visit their website to register your interest. www.all4downsyndrome.com.

Rebecca's Interview (Georgina's Mum)

1) Tell us a bit about your family.

Georgina’s father and I met in Bahrain 27 years ago, then went back to England where Georgina and Emma were born. We then returned to Dubai when they were 1 and 6 months old. Thomas was born in Dubai 5 years later.

2) You founded the group All 4 Down Syndrome 14 years ago, tell us a bit about that. Why did you feel there was a need for support here in Dubai?

Being in England where Georgina was born, the support network was there and we didn’t need to look for guidance. Upon our return to Dubai, we realized this type of support did not exist.

My whole experience was more positive because of people who were able to give us guidance and the correct answers to the questions we had.

Returning here, each new parent of a child with Down Syndrome I met seemed to have such shocking experiences and felt heir lives were over when they just needed to be reassured that their lives were on a different path, and that this could a be a positive experience.

3) What is Georgina’s biggest gift?

Giving people pleasure. She amuses people, and loves interacting with anyone, and meeting new people.

4) What has been the biggest challenge for you with Georgina with Dubai?

The biggest challenge has been trying to get professionals to understand that Georgina is far more capable than what she appears. In some cases she could have achieved so much more during her education. We have experienced some of the most caring and determined teachers who have taken it in their stride to help develop her potential. In the years of Georgina having LSA/shadow teachers her best one was the one who had never worked with anyone with special needs before. She saw Georgina for who she was, and not what she has.

The continuous challenge that will always be there is the clarity of Georgina’s speech.

Initially my husband and I wished that if we had a child with special needs, it wouldn’t be Down Syndrome. At least we could come to terms with it without the rest of the world knowing. But within the first few years of Georgina’s life we realized we are the lucky ones.

With Dubai being our home for all of our children’s lives, we always assumed we would have to return to Europe to further Georgina’s adult education, but as Dubai has grown, Georgina’s social and educational training is as good here as she would be getting back in England.

Thank you Rebecca for sharing this with us and for creating a support network for people with Down Syndrome in Dubai!

Sharan

With each and every new story comes a newfound respect for the triumphs and struggles that can be experienced by the human condition.

We all have a gift, yes, this is true, and we all have struggles.

That is the commonality that binds us and is part of the human experience.

Today I share with you a beautiful story of a young man who has recently discovered the gift in his story. Sitting and speaking with Sharan was a humbling experience. He is very articulate and is an amazing advocate for Muscular Dystrophy, as well as being one of the artists that studies atMawaheb from Beautiful People.

Please take a moment to read through and comment on this most extraordinary interview. The courage it takes to share your story in a public forum should be recognised.

Sharan will be giving a talk tomorrow at the AccessAbilities Expo 2016 at 1pm in the Knowledge Centre. Please be sure to attend if you can!

1) Tell us a little bit about yourself.

My name is Sharan and I am from India. I am 24 years old. I have Muscular Dystrophy. After I came to Mawaheb I learned that I could be an artist. I have been at Mawaheb for 5 years. I paint with a remote control car. I like watching tennis, football, cricket and movies of course. My favourite superhero is Batman.

2) What is your biggest challenge?

I was born in Dubai and went to mainstream school. When I reached Grade 12 I was not able to pass my math's test. I was not able to continue the second term of Grade 12 and had to sit at home for 4 months.

I felt lost because all my other classmates were continuing their term but I was unable to join them due to my weakening condition of my back. This made it hard to sit all day. I wanted to be an architect and a pilot but I was not able to do that because of my condition.

3) Tell me about Muscular Dystrophy?

It's a muscle weakening disease which gets worse over time. The protein dystrophin is deficient. It starts with lower body, and travels upward.

There are 40 types of MD. I have Beckers MD.

At the age of 7 I started to notice changes. It's a long journey.

4)What is something that people assume about you being in a wheelchair?

A lot of people assume that if you are in a wheelchair you all have the same condition.

Many people think I have Muscular Sclerosis.

5) Do you feel seen?

I feel that people don't see me and that I can be pushed into a corner. I feel they assume I am useless.

6) What would you say to people to help them understand and to educate them?

Just because I have special needs doesn't mean I am weird or out of this world. I struggle with my speech sometimes. There are times that I cannot speak. Those times when I cannot speak happen when I feel that people may not want to speak to me or ignore me.

7) What improvement would you like to see in Dubai to make it more accessible?

I can see Dubai is working hard to make the city more accessible for 2020. I would like to see wheelchair ramps installed in all buildings and particularly restaurants that have the space to accommodate. Having an alternative door would also help.

It would be nice to have accessible tables that can fit a wheelchair in a restaurant. I would like to be able to go to a concert in Dubai but have never been as they are not accessible. A lot of cinemas are not accessible.

8) What is your biggest gift?

I can speak to people and inspire and motivate them. I would tell people that anyone having MD is a long and hard journey, but if you don't accept who you are, you will not be able to tell people how valuable you are.

9) If you were doing an inspirational talk, what would it be called?

Be yourself.

10) What makes you wake up every morning?

I feel I've been sent here for a reason to teach people and share with them the value of life. In our case, we see people with a different perspective because we all have challenges.

Our challenges could be bigger than most people but it doesn't mean we cannot have talents and contribute to society.

11) What goals do you have for the year 2016?

I would like to work on my anxiety on my condition. I have been thinking about what I might not be able to do as my condition gets worse. I do a lot of physiotherapy. I hope for improvement in my condition but it is hard work. I am grateful and thankful for not having a more severe form of MD.

Wow, incredible and inspiring. Words straight from the heart to touch the heart.

Thank you Sharan, you are most extraordinary!

Josie

This story holds a very special place in my heart as I have known Josie pretty much since she was born. Josie is a little bit older than my daughter Ruby and has Down Syndrome. Imagine our luck when Ruby was born that we found another couple that was going through the same thing we were? And to top it off we think they are pretty cool too!!

The Mcintyres are a pretty special family, I think they are all pretty extraordinary, but today we get to see an interview from a different point of view as Josie's sister Hattie will tell us all about Josie and what it's like to be her sister.

These photographs were taken at Josie's 10th birthday recently, and we were lucky enough to meet her best friend Dhahi (who Josie is clearly very fond of) and to see the beautiful bond they have for each other.

Sit back and enjoy this heart warming and beautiful story told from the point of view of an 8 year old.

1)Tell me a bit about you and your family.

My name’s Hattie, my mum’s Clare, my dad is Rick and my sister’s name is Josie. I’m 8 and Josie is now 10.

I’m half New Zealander and half Welsh, but a little bit more New Zealander. I was born in Dubai and Josie was too. Josie has Down syndrome and is a little bit different to other kids. We have two pets, one is a dog called Dudley and the other is a cat called Socks. Socks is more like a dog because he plays a lot and Dudley is more like a piglet. I have a nana and bampy who live in Wales and a granny and granddad who live in New Zealand. My uncle lives in Abu Dhabi and we meet up to go camping together. I like going to Wales to see my Welsh family and I like going to New Zealand too. Rosemarie also lives with us and is part of our family.
Josie also has an imaginary sister at the moment, she is always asking to go to her sister’s house to play because it’s her sister’s party- which seems to be every day.

2) You wrote a little book about your sister Josie a few years back. Tell me all about it.

I started with the blurb! I wrote ‘If you want to learn about Dancing room then read this book.’ I was five when I wrote the book and I called Down syndrome dancing room. I don’t anymore. The title of the book is My Sister has Dancing Room.

Mummy used the words from a paper book I made and added photos of me and Josie. I took it to school to show my class and I take it every year on World Down Syndrome Day. Josie takes it to her school too.

3) What is your most memorable moment with Josie.

Well she calls me Nutball every day!

The most memorable moment with Josie is when she got lost in the Mall of the Emirates. She was missing for two hours and when the security eventually found her she was pushing a trolley in Carrefour and filling it with bread, jam and chocolate biscuits. Luckily she didn’t find the chocolate aisle. We were all very worried about her but Josie wasn’t worried at all. In school I wrote about my weekend in my news book and I wrote 3 whole pages about what happened. Miss Lee, my teacher gave me a certificate in assembly for writing such an exciting story.

4) If Josie had a superpower, what would it be? What would YOURS be?

My mum says Josie has an inbuilt chocolate detector! I think Josie would like to be invisible so she could sneak into the kitchen without anyone noticing. She would still have to practise sneaking quietly as she not very good at sneaking quietly. My superpower would be to be a wifi queen. This power would mean I would have wifi where ever I go.

5) What is Josie's biggest challenge in her life? What is her biggest gift?

Josie’s biggest challenge is for her to speak. Josie talks a lot but it’s hard to understand what she is saying. She goes to talking class every week. She also finds it harder to learn to read and write but she can read and she can write now. Sometimes she tries her very best but other times she doesn’t try at all. She is good in school most of the time but last week she had to go to see Mrs Kivi because she was drawing on Miss Sophie’s jeans. When she does things a little naughty I find it funny.

Josie can’t ride a bike but we are planning on getting her one for her 10th birthday. We will need to get the bike changed so that
she can ride it. It will be good when she can ride. We can bike together.

Josie’s biggest gift is that she laughs a lot and makes other people laugh. She always brings fun into our house. For example, she eats a banana and then puts the skin on the floor for us to fall over. We all pretend to fall over. Another one of her tricks is that she takes your chair away if you leave the table to get a glass of water. When you get back to the table you have to pretend not to know the chair isn’t there and sit down, and fall on the floor.

6) If you could teach the world just one thing about Down Syndrome, what would it be?

Watch out for banana skins!

Josie has Down syndrome and can do most things other kids can do. She can run fast, she can swim, she loves to dance, she sings One Direction, she likes dressing up, she likes doing shows, she likes playing tag, she likes cooking, she loves eating pizzas, she likes going to school, she loves PE, she likes parties, she likes playing with her friends, she likes sleepovers (at her house), she loves her pets, she likes going to the park, she likes going to the movies, she likes going to waterparks, she loves watching Scooby Doo, she loves playing Minecraft with me and she can beat Mum and Dad on Subway Surfer.

7)Do you think Josie has more adult time, more time with mum and dad than you?

Josie has a lot of time with adults, like her speech and language therapist, her learning support worker in school – Miss Sophie/Miss Siobhan, and she has more time with Rosemarie, Josie calls her Aiya, who is our nanny. My mum’s new job means she has more time with us but my dad’s new company means he has less. I think I have some extra time with my dad though as he takes me to school every day. I think Josie would like to work with my dad when she grows up. She loves wearing her Mac Pack shirt, and sometimes dad takes her to the job, so I suppose she’ll spend more time with him then.

8)Tell me about your friends.

We both have friends from our different schools but we have some friends from out of school who we both like to play with. Sometimes I play with one kid from the family and Josie plays with the other or we all play together.

One of Josie’s best friends in school is Dhahi, he has Down syndrome too. Sometimes Josie has playdates with her friends from school at our house. I have playdates with my friends from school too. Sometimes me and Josie play together and sometimes we don’t. I like to play on my ipad and sometimes I like to do arty things. Josie likes to play on her ipad too but her favourite game is dressing up and packing her bags like she is going to work or going on holiday or going to Nana’s house.

Hugo is Josie’s best friend out of school and they have lots of fun together – normally dressing up as police officers and arresting people. We both like friends to come to our house and we also like going to our friends’ houses too.

Thank you Hattie, your answers are honest and some made me giggle. You are one extraordinary sister!

Zahra and Zoya

"Once upon a time there was a beautiful princess with golden hair, blue eyes, and pearly white teeth. Her prince was tall, dark, and handsome....."

A popular line we have seen time and time again in fairy tales and children's story books. While seemingly innocent, it probably wouldn't occur to most of us that the line "tall, dark, and handsome" would be offensive to anyone, and yet it is one of the first things that we discuss when I sat down with Zahra to learn more about their extraordinary family and the challenges they face living in a world that is made for people of average height and above.

Zahra and her daughter Zoya have Achondroplasia, a form of Dwarfism, and see the world from a whole different perspective.

I first met Zahra through an event where she was promoting her support group Little people of the UAE, and then again recently at Mawaheb from Beautiful People where Zahra is a volunteer.

I really enjoyed spending time with this amazing family and learning more about their world. I'm sure they would all be grateful to know that you took the time to learn a bit about them too.

I am learning so much from this project, and every day my heart opens that little bit wider. Thank you for the opportunity to learn about your incredible journey, Zahra, Muffadal, and Zoya!

1) Tell us about your family!

We are a family of 3, and have a daughter who is 7.5 years old named Zoya. My husband is a banker, and I'm a computer engineer. I was born with Achondroplasia which is the most common form of Dwarfism. Before and during my pregnancy with Zoya we did genetic counselling in which the Dr mentioned if the mother has Achondroplasia there is a 50% chance the child will inherit the gene.

During the 4th month of my pregnancy we were told that Zoya carried the gene. We have not yet been able to identify the exact form of Achondroplasia in Zoya. I am desperately trying to find a genetic specialist in Dubai who can confirm the exact type of her condition.

As a child, my husband Muffadal had a condition where he grew rapidly (the medical reports are not available) and was given hormonal injections to restrict his early hair growth as he was going through puberty at an early age. These injections subsequently stunted his growth uniformly. This is different to Dwarfism in that Dwarfism affect the joints, specifically the limbs.

2) What has been your biggest challenge living with your condition?

I believe this world is made for people of average height and above. I am 1.26 m tall. When out in public you feel eyes turning towards you. I am used to it now, but my concern is for my daughter.

It's really difficult to go to an overcrowded place. I am at the exact height of most people's posterior region. This is not always a pleasant sight or smell!

The disabled toilets are really high. There is only one mall in Dubai that I know of that has special low toilets and wash basins.

I feel we are not catered for in many facilities. The hooks on the door of the toilets are very high which means I have to put my bag on a dirty floor or on top of the toilet which can be awkward.

Many reception counters in shops, offices, and institutions are very high. This can be awkward.

When standing in a queue with a high counter, I am often overlooked by both the person at the counter, and the person behind me. The person behind me will often start having a conversation with the person on the counter as if I am not there, while the person at the counter either overlooks me, or can't see me. I now have to use my voice to get their attention.

When walking in any car park, and particularly large ones, we feel unsafe as many of the cameras in cars today will not see us and from many angles the driver is not able to see us. We need to be extra careful.

Most seating is uncomfortable for us including park benches, airplane seats, cinemas, and any type of public transit. Imagine sitting on a plane for 6 hours with your legs suspended in mid air with your calf muscles feeling constricted! The solution for this is very simple. A block or pedestal to res the feet on at the appropriate height would be helpful. A person with shorter limbs cannot reach the footrest.

One of the most common challenges we face is trying to reach items on the shelves of supermarkets. We often have to ask staff, or kind customers to assist us.

3) Do you feel you are given equal opportunities when applying for jobs?

No.

I feel that people associate abilities with height. Having achondroplasia does not affect my intelligence or my abilities to do my job.

Largely speaking, people get colored in their views. They are not as discerning when making a decision about hiring me. Perhaps this is due to societal conditioning.

Many people who have dwarfism end us as objects of ridicule for the purpose of entertainment in a circus, hotel, or public arena.

Society needs to allow them the opportunity to explore possibilities of working in the mainstream.

4) What is your biggest gift?

We haven't allowed our physical height to be a drawback in our personal and professional lives. We have adjusted well to society, and we have not allowed our personalities to be subdued on account of societal mores which are largely discriminatory to people with short stature.

I run a support group called Little People of the UAE.

Many people are afraid to come out in public because hey are afraid of the public eye. If you are reading this then please join us, you will find community spirit here! We are open to any nationality, age group, and ethnicity.

5) What are your fears for Zoya?

She needs to be independent and to be able to care of the normal course of life.

This is frustrating for her.

Even something as simple as using a lift or getting in and out of a car requires assistance.

6) What would you like the world to know about living life as and with a short person?

We want the world to empathise but not sympathise with us. It would be interesting to see people of average height living in our shoes for a day.

Don't pity us.

Include us.

We all need a little inspiration in our lives, thank you for sharing and please be sure to SHARE with others.

Oscar

I feel so grateful to be connecting with so many incredible people in this great city of ours!

It is really an honour to sit and learn about the lives of others and to connect to the sameness and oneness...to embrace the uniqueness. It is humbling to lap up the victories we have (no matter what their size), and to acknowledge the challenges and gifts that come from our journey.

Meet Andrea, Dean, Oscar, and Maisie, a British family living in Dubai. Andrea may be a familiar face to some of you as the face of Out of the Blues, a support group to help women facing post natal depression.

Each time I meet a new family I feel honoured to be allowed to enter their world and to learn something new. Please take a moment to listen to the story of one family's day to day journey living with OCD (Obsessive Compulsive Disorder), and SPD (Sensory Processing Disorder).

1) Tell us about your family please Andrea?

We're a British family who has been in Dubai for 8 years, and moved here when Oscar was 1. Maisie was born a year later. My husband is an insurance broker, and I'm a qualified Doula and baby massage instructor. I also run a group called "Out of the Blues" that reaches out to mother's experiencing post natal depression.

Oscar was diagnosed with SPD (Sensory Processing Disorder) a year and a half ago. We didn't want to label him, but we knew he was quirky. We feel a lot of schools have trouble acknowledging special needs. These needs can often be mistaken for bad behaviour. Oscar is a sensory seeker which means he needs movement breaks. He has fidget toys and cushion to help get through his lessons at school.

Oscar also deals with separation anxiety and OCD, but he currently attends mainstream school.

2) What would you say is Oscar's biggest gift?

Dean- He is incredibly bright, sharp, and loving to people he cares about. He has the most amazing ability to ask questions about things we don't think about.

Andrea-He helps you to see the world differently and thinks outside the box.

3) What is your biggest challenge living with Oscar's needs?

Andrea- The judgement and looks that people make when we're out in public. They just assume he's naughty. He also has tactile defensiveness, so that means he is hypersensitive to pain. If he fell over, and/or got a slight bump he feels the pain exponentially. In this instance, when I approach him, he's very likely to lash out as a coping strategy.

Dean- Today we were at the bike park, and he banged his leg, which meant he screamed, and he lashed out at me. I got hit, he told me he hated me, and the bike was left behind.

Andrea- I often get the attitude from others "Why have you allowed that to happen?"

4) Maisie, what is your biggest gift? What is the best thing about Oscar?

I am kind. Oscar is kind, and he tries helping me when I'm in trouble. He's the first person there to help me.

5) Andrea, what have you found the most helpful in Dubai?

Oscar is working with an OT (Occupational Therapist) from kidsFIRST Medical Center named Lauren who just gets him.

Lauren's been great, the support has been more than we could ever expect. We've been lucky to connect with other families dealing with similar issues. I don't think we would have the luxury of having such a tight knit community in the UK as we do here. I think because we are expats lacking the family support network we would have at home, when we meet someone going through similar things, we build a stronger bond in a shorter amount of time.

6) Oscar, if you met another little boy who has SPD or OCD, what would you say to him?

Oscar- Have you washed your hands?

Andrea looks at him and says "Is that what you would say?"

Oscar- Yes (continues playing)

****What was really interesting from my point of view was that the children were playing in the dirt outside when I first photographed them. When they came inside it was like a switch went off and Oscar realised that he needed to wash his hands several times. He also had to have a shower which Andrea excused herself during the interview to assist him. In the end I asked if they would like a family photo taken outside. Oscar clearly did not want to go outside again and I could clearly witness just a bird's eye view of what it must be like to live with his condition.

7) What would you like to say to the world about Oscar?

Andrea- Don't judge a book by it's cover.

Dean- Oscar is very sharp and funny, his comedic timing is great.

Andrea- When your child is first diagnosed it's pretty scary, and then I think "special" is the perfect way to describe him.

Thank you all for your honesty and bravery in sharing your story with us! The courage it takes to open up and share your world is beautiful.

James

 I met James last summer when I first approached Mawaheb for Beautiful People about sharing their stories for a potential project to educate, advocate, and mainstream beauty in difference.

Fast forward 6 months later, and I have the pleasure of sitting with James and learning more about his world. James tells me he is the spokesperson for Mawaheb, and sitting with him for only a few minutes I can see why. He is articulate and his honesty is so transparent it can't help but touch your heart.

He is a talented young man, and is an incredibly likeable person. I think we can all learn from one another on this earth, and this interview is no exception.

Pay close attention to his words. They are simple, yet very profound.

When James told me that he has Kabuki Syndrome, I must admit that I didn't know anything about it, but I have found this link (http://sakks.org/information/what-is-kabuki-syndrome) which helps to describe some of the characteristics. As always though I feel that it is most important to focus on the individuals and their particular journey. Thanks for being such a great advocate for extraordinary people James!

It seems only fitting to share this story only 2 days short of Art in Secret, an exhibition happening on the 18th of January in support of Mawaheb and the opportunities they create for extraordinary people like James. If you are interested to attend this unique event, please go to their page for more info.

Enjoy!

1) Tell me about yourself James.

I'm 28 years old and I've been in Dubai for 11 years. I came to Dubai when I was 17 years old from England, and have a brother who is 2 years older than me.

I love acting, singing, dancing, and painting. The number one thing I like to do is hang out with my friends. If I didn't have them I wouldn't be who I am today.

2) Last time we met I remember you said you liked to write, what do you love to write about most?

I love to write songs, and fan fiction (short stories). Anything that comes from my imagination really. I just write it down.

3) What is your favourite song that you've written?

My newest song is called "Be Original" and tells people to stop following the crowd, and stop trying to be like other people. If you follow other people, you won't have your own identity.

4) Can you give us a line from your song?

"Be Original. Be who you are. You're not cool following this guy, that girl, this guy."

5) What are your biggest challenges in life?

To make other teenagers/young adults see who I am. A couple of months ago I went to an audition for this company called Celebrity Experience. It was very professional. We had to audition in front of a celebrity. A few hours later my mom got a call to say I got a callback. This summer I am going to Hollywood, CA to be trained how to act. I just want to get through this so people can realise that it doesn't matter if you have special needs because you can do it all if you put your mind to it.

I have Kabuki syndrome. It challenges me because people look at me and don't see James, they just see my special needs.

6) What is your biggest gift?

My personality of being original. I've not changed at all. I'm just happy and can get on with anybody.

7) What do you want to share with the world?

I just want to say something to parents of children with special needs and teenagers. It doesn't matter what you are on the outside, what matters is what's inside your heart.

Thank you James. Truly awakening, and truly heart opening. James is a very talented artist in many ways, you can view his work or go and speak to him down at Mawaheb!

Victor

I had one of the best mornings I've had in a long time down at Mawaheb for Beautiful People dancing, taking photo's, interviewing, but mostly learning about so many of the amazing people there.

Today I would like to share Victor's story with you. It is a beautiful and powerful story of the beauty of silence.

Victor is an artist, and an incredible one at that. When he brought his painting out it literally took my breath away, and I'd like to add that my photographs don't do the painting of the African lady justice at all....you really have to see this in person!

Take a moment to learn a little bit about Victor, his story is about loss and triumph, a real inspiration!

Tell me a bit about yourself, who is Victor?

I am 25 years old and come from Zambia. I am deaf. I have been living in Dubai for 10 years, and love to paint. Photography and computer work are also my passion. I am also an Arsenal football fan!

What is your biggest challenge living in Dubai?

It is hard to find people to communicate with. Not many people know sign language. Communication is an even bigger challenge for those who cannot sign or lip read.

Tell me about your schooling?

I went to a deaf school in Zambia, but when I moved to Dubai I had to go to a Special Needs school here as there were no facilities for the deaf.

Did you feel like you fit in or belonged there?

No, not at all. I wasted six years being there but there was no other choice. The teachers were unable to sign and I had no friends.

When did your life turn around and who helped you to do that?

I met Gulshan who introduced me to Mawaheb and helped me to find the confidence to pursue my art.

How is your life different now?

I became an artist and started to make friends here at Mawaheb from Beautiful People and in the community. My world opened up. I travelled to the UK twice to work with Trevor Waugh who is a highly acclaimed contemporary British artist. I had 2 solo exhibitions, one in Showcase, and the other in Art Couture.

What is your biggest gift?

My talent.

What changes do you want to see in Dubai to make it more accessible for people who are deaf?

First thing would be a school for the deaf. I would also like to see more deaf people in the workforce in Dubai. It would be nice to see sign language taught in all schools as compulsory. English subtitles for movies would also be great.

What have you learned in your journey so far?

It can feel lonely at times. People need to make a bit more effort to try to communicate.

Thank you Victor, and all the people at Mawaheb! I truly enjoyed my time with you! You can see more of Victor's work at Victor Sitali Artistry, some incredible pieces on his page to give you a feel for the body of his work!

If you would love a chance to get some amazing artwork at a reasonable cost and support the students of Mawaheb, please be sure to visit Art in Secret and see their upcoming exhibition on the 18th to 21st of January in Al Serkal! An event not to be missed!

Sara

I had the privilege of meeting the lovely Tala Badri and her gorgeous kids Sara and Ali over the holidays.

I initially connected with Tala after watching her Tedx Talk about her daughter Sara. If you get a minute to watch it, please do as Tala is Emirati, and her perspective and attitude is refreshing. (I will provide a link at the end of this interview.)

I really enjoyed getting to know more about Sara's world as although I have recently learned a bit about Autism, I did not know very much about Asperger's (Sara was diagnosed when she was 2 years old). Thank you Sara for taking the time to share a bit of your passion for music with me, and to Tala for allowing me to tell this story.

Tala's interview about her daughter is candid, heartfelt, and inspiring. Please take a moment to read, and as this page is about advocating, educating, and mainstreaming beauty in difference, I encourage you to SHARE with others.

Enjoy!

1) Tell us a little bit about your family (ie where are you from? how long have you lived in Dubai? about your children?)

We are an Emirati family - myself, Sara 14 and Ali 10. All born and brought up in Dubai. My father is Emirati and mum is Lebanese. The children's father is Emirati - we have been divorced for 4 years. 
Sara and Ali go to a British school.
Sara was diagnosed at age 2 with PDD-NOD which is Pervasive Developmental Disorder- Not Otherwise Specified. This essentially means that she was on the autism spectrum but there were some aspects that didn't fit exactly at the time. She was developing normally from a cognitive aspect but had sensory issues, slow motion skill development, never gave eye contact, had melt downs, didn't engage with people ....
We started therapy with Sara very early on as we were encouraged towards early intervention - ABA therapy, speech therapy and occupational therapy. We also used music therapy which was a big turning point in Sara's development as she really responded very well to that.
At age 6, Sara was officially diagnosed with Asperger's syndrome.

2) How would you explain what Asperger's means?

The best description of Aspergers can be found here

http://www.autism.org.uk/about/what-is/asperger.aspx

I use this definition to help people understand more about Aspergers and Sara.

3) What have been your biggest challenges in raising Sara and getting to know who she is as an extraordinary person?

There have been many challenges over the years but the key ones have been essentially the stigma attached to having a child with a special need - and this has come in many different guises. We have been through challenging times with acceptance from extended family members of Saras condition - I have however been incredibly lucky to have such a supportive family, especially my mum and sister who have worked alongside me with Saras upbringing and supported her therapy and development. It was difficult with a few friends as well who shied away from having Sara around for fear of a melt down or tantrum and how to deal with that. It was extremely challenging getting her into mainstream schooling and keeping her there. It was challenging to finance the therapy she required over the last 12 years as we received no support from the government, health ministry or insurance.
It's been a long and tough road - it had impact on my marriage, my relationships with friends and work. But today, seeing Sara and what an amazing young individual she has become - it's been worth every tear, every frustration, every melt down we have all shared with her.
The challenges are still there - being a teenager is not easy as it is and it is especially challenging for one with Aspergers. Sara has had a very tough year at school dealing with teenage pressures of friendships or lack of them, pressures to conform, pressures of looming examinations and thoughts of further education. Anxiety levels are often high and dealing with them is a challenge.
Personally it has been challenging to find a work life balance as a single mother who runs her own business. I am constantly pushed and pulled in all directions and this is been particularly hard for me. I often feel very alone and tired as many do not understand the emotional, physical and financial pressures of dealing with work, a people centric business, a home, two children with very different needs, expectations of family and those of friends.

4)What have been the biggest gifts that have come out of these challenges?

Sara is an intelligent and sensitive individual. She is strong willed in terms of knowing what she likes and wants. She is a talented musician and actor - which is extraordinary considering that a few years ago she couldn't cope with being anywhere near a stage and would have a breakdown every time. When she sings, everyone listens. Her voice is just incredible and the songs she writes are heartfelt.
She is articulate when talking about things she is passionate about - music, drama, travel and humanitarian causes.
She has a deep sense of helping others. She will tell you that Nepal and Cambodia have been her favourite experiences because she got to work with under privileged children and loved it.
My biggest gift is Sara - when people say they don't know why they were put on this earth - I know. Sara was the reason for me to be here, to help her realize this potential of being an amazing individual. This is not to detract at all from my son who is also amazing - but Sara has to really fight to get to where she is today.

5) Do you feel that having a child with special needs impacts your relationships (friendships, marriage?)?

Absolutely. My marriage suffered greatly because of pressures of having a child with special needs. It was a significant contribution to the eventual separation but not the only cause. Having said that, today I have a very good relationship with my ex-husband and we talk often about Sara and her development using each other for support during challenging times.
I lost many friends because their misunderstanding of Sara and how best to accommodate her, but I have also gained new friends because of it and stronger friendships with those that have taken the time and made an effort to accept and understand Sara.
My family have always been there and been supportive and for that I am very fortunate.

6)What would you like the world to know about Sara?

I think what I said before answers this too.
Perhaps I can say what I wish for Sara instead?

And this would be what I feel any parent would want for their child and that is happiness.

She doesn't need to be successful, or rich or famous.

I want her to be at peace with a strong feeling of self worth and knowledge that she is incredibly loved and an extraordinary young lady.

To listen to Tala's Tedx Dubai Talk, click here
https://www.youtube.com/watch?v=zyR1T15yl58

 

Owen

Meet Owen.

Owen is 12 years old, comes from Tennessee, and happens to have autism.

I had the privilege of photographing Owen from a distance at his horse riding lesson yesterday with Riding for the Disabled Association of Dubai (RDAD). Owen clearly enjoys his horse riding, and according to his mom April, it's his favourite activity.

I didn't get to meet his lovely Mom April like I usually do when meeting extraordinary children, so instead we chatted on the phone and she sent me the answers to these questions by email.

Reading over April's story was quite emotional for me, particularly the last question.

I think you'll agree that she is full of honesty, bravery, and compassion for her son.

Please feel free to SHARE these stories of extraordinary people to help us spread awareness and truth about living a life less ordinary.

‪#‎IamME‬ ‪#‎iammostextraordinary‬

1) Tell us a little bit about your family.

We moved from the USA to Dubai in 2008 so my husband could fly the big planes. I like to stay so he can live his dream of flying the big planes and I could live mine of having a nanny. My husband and I have 3 kids together, Owen, Matthew age 10 (11 next week) and Ellie age 9. My husband has 2 sons from a previous marriage age 23 and 25. We are just a typical family who loves being together and having fun. We enjoy hanging out with friends, visiting family, going out to dinner, going to the beach/pool, playing sports, and going to the park. And all three kids love going to amusement parks, if we could they would go to Sega Republic every week. We love to travel but its very challenging to do with Owen because exploring the unknown can be too much for him.

2)What does autism mean to you?

Autism sucks!

I know I might get some backlash for saying that but that's how I feel. Don't get me wrong I love my son, Autism is not who he is it's just a small part of him. Autism is very scary, heart breaking, stomach turning, exciting, misunderstood, unpredictable, unique, isolating, challenging, sleepless nights, and forever life changing. However, I'm thankful to Autism for teaching me how to love unconditional, have patiences, build a strong team (family, teacher, friends), be flexible, appreciate the small things accomplishments in life, and never give up or lose hope.

3) What has been your biggest challenge living in Dubai with a child with autism?

Autism is expensive and even more so in Dubai. Our son attends a non-profit special needs center which is covered for the most part by my husband's employer however, any other therapies (speech, occupational, physical and behavior therapy) Owen needs are not covered by the company or by insurance. When he had behavior therapy, it alone cost more than 12,000 AED per month. Speech, Occupational and Physical therapy is a minimum of 400 AED per session and most children with Autism need 2 to 4 sessions a week of these therapies. We tried our best for a few years to provide the necessary therapies for Owen but unfortunately it was unsustainable. He could still benefit dramatically from these therapies but unfortunately its no longer in our budget due to the loss of my job.

Many families talk about mainstream schooling being a big challenge and when we first moved to Dubai we had hoped Owen would continue school as he did in the US at a regular school. However, since Owen was not speaking or toilet trained the schools would not even consider him. He now communicates with his Ipad and it might be possible for him to go to a mainstream school. However, the cost of having an assistant for him at school would be extremely expensive and my husband's company would not cover the cost. So its not really an option for our family at this time.

4) What is Owen's super power, what would you like the world to know about him that isn't defined by autism?

Owen is smarter than people think. He doesn't speak but despite this and not attending an academic school he is able to read, write and do math. He can do puzzles like no one else I've ever met. He does a 100 piece puzzle on his iPad in less than 5 minutes and from left to right. If we could somehow tap into his visual power, just imagine what world problems he could solve.

He understands every word you say and most people forget this because he can't talk. One day he is going to tell us everyones secrets and surprise us all.

5) What is your biggest wish for the future of your son?

My wish for Owen is simple, I would like him to be a happy productive global citizen. But my selfish wish is to hear him say "Mom, I love you" just one time.

Ally

This is Ally.

When I started this page, I really had no expectations as to what stories would come my way. I wanted to leave it open....to allow anyone who felt they identified with the concept of I am ME to come forward and share their truth.

Ally is from the USA and has lived in Dubai for just over a year. She is a qualified nurse, wife, and mother of 2 young children.

She is also deaf.

When Ally contacted me I was excited to find out that she is also my neighbour! Even from the moment I went to let her know I was coming I started to encounter a small idea of what it must be like to be in her shoes. I went to the door and rang her bell, and then thought "How is she going to know I've rung the bell?', then I think to myself "Oh, let me get her number, I'll give her a call!" only to realise a second later that this was not going to work.

Only seconds later, the gate opens and I am greeted by one of the most brilliant lights I have ever met. Truly.

We exchange hugs and I ask her "How did you hear the bell?" and she says "Oh, I have dogs!". As I learn very quickly from Ally, this is something that really makes her happy, when people are not afraid to ask questions and learn about her world.

So here is a little bit about what it's like to be in Ally's shoes.

What are the biggest challenges of being hard of hearing?

Not being able to hear my children cry. The other night my daughter fell over, I was brushing my teeth and I could not hear her and didn't realise she had hurt herself.

Sometimes it's hard to engage with other people as they don't know how to react or communicate with you when they realise you are not answering them because you can't hear them.

The hardest part about being deaf is being shut off from the rest of the world.

When I went through nursing school, there were a few people who were unsure of my abilities. Getting hired was challenging in the beginning as there was concern over my abilities to care for patients. I knew I could do it! I had to constantly prove that I could do the job in my own way. For example, I had a special stethoscope for people who are hard of hearing that helps me to do the job I need to do, but with different tools.

What are the biggest challenges of living in Dubai and being deaf?

The social aspect is much harder here. In a group situation it is difficult to follow conversations due to having to lipread and try to keep up with what people are talking about. I miss the social aspect of being around other people who are hard of hearing that can relate. Back in the US, they have events like the DPHH (Deaf Professionals Happy Hour) where everyone is in the same boat and like minded people can meet.

It can feel very isolated here as I have not yet met anyone else here who is deaf and understands what I am going through.

I also miss having Closed Caption TV.

What is your biggest gift Ally?

When people see what I have achieved (ie going to nursing school when I was told that I couldn't be a nurse) hopefully it gives them inspiration to follow their dreams.

My sister is also deaf, and growing up we were never allowed to use our hearing loss as an excuse to not go out and do something in the world.

I think that since I know what it feels like to be excluded, I try my best to make sure that I connect with people.

(I would like to add that Ally is one of the warmest people I have ever met. Her smile lights up the room and her energy is just incredible)

What would you like the world to know about your experience of being deaf?

Most people with hearing loss are very approachable. Please don't be afraid to ask about our hearing loss. There are other ways to communicate and to "hear".

What terms are correct when explaining your condition?

To use the words deaf, or hard of hearing is ok. Most people who are deaf don't like the term "hearing impaired" as it implies something is broken or not ok. Some people may even be surprised to understand that some people who are hard of hearing are actually very, very proud to be deaf.

Ally was quite keen for me to photograph an image showing her hearing aid as she wanted to raise awareness for those that may not have seen one or were afraid to ask.

If you know of anyone else in Dubai who is hard of hearing, please do let us know so we can connect them with Ally, and of course if you see her around Dubai, please do go and say hello!! She is one of the most radiant and beautiful people I have met!

Ibrahim

Meet Ibrahim, his Mom Sherine, Father Basim, and brother Dawud.

Please take a moment to read a mother's perspective on her most extraordinary son....

1) Tell me a bit about Ibrahim?

Ibrahim is very gifted socially, and will make friends literally everywhere, and because of him I have met some amazing people!

He also picks people to befriend. It's never a random choice in my opinion, I think he has a sixth sense as weird as that sounds. I always say if Ibrahim likes someone then that person is good! He's like my filter somehow..

2) What has been the biggest social challenge in Dubai having a child with Down syndrome?

The biggest challenge for us in Dubai was definitely education, mainstream schools need to change their perceptions and provide more awareness. Ibrahim was mainstreamed in his early years and he did extremely well. I always found that any problems we faced were not with the children but with the teaching staff and some parents of other children.

3) Ask Dawud to describe his brother please?

If you ask Dawud about his brother, he will say that Ibrahim is magical!!! He can always get things to work wink emoticon !!

4) What do you want the world to know about Ibrahim?

I"d like people to look beyond his features, he has so much kindness to give and is just like any boy his age. He gets upset and has his moods. If schools just gave him a chance perhaps they could learn a few things. The world would be such a better place if they the schools were more open minded.

Sherine and her family have recently relocated to Bahrain. If you happen to see them around, please say hello! They are a gorgeous family!!!

Will

27 rejections.

Yesterday I met with Will and his family. Will was diagnosed as being on the Autism Spectrum when he was around 2 years old.

His parents tried to get him into school and were repeatedly told "no".

27 times in fact.

I think we have all been rejected at least a few times in our life and can most likely agree that this is devastating to say the least.

Will is intelligent, sociable, and a bright light in this world. He likes to play with Lego, like most children, and adores the outdoors.

After much persistence and a "shift" in approach from his mother, Will now attends mainstream school here in Dubai.

His Mom Lisa explains "It started to get tiring and frustrating having so many doors closed, so I started to think and approach things differently. I started to ask schools what facilities they had, and if their training was adequate and up to date to be able to nurture my child"

Will has a sister Issy, and when I asked her about her brother she said "Will's brain works differently to ours. He has a great imagination".

How wonderful would it be if we could all understand facts like these so simply and easily as children do? Thank you Issy!!!

When I asked Will's father Joe what he would want people to know about Will he lit up and said "Expect the unexpected. Will's potential is huge, but sharing what he knows will always be on his terms. I have always been confident he was capable of much more than what we were told he would achieve. Giving Will the tools to bring out his potential makes me happy."

Of course there have been challenges.

"In the beginning, I felt out of control" says Lisa, but they all agree that as time goes on, there is light at the end of the tunnel and Will has proven that he can do so much more than what others expected of him.

Thank you Will and family for letting us come into your world.

Ethan

This evening I met a with a beautiful lady and her two sons, one who happens to bear the label of Autism.

As this project is just starting, I didn't take many photo's just yet. I wanted to sit and listen to what she had to say and observe her children and the environment.

I felt so much comfort in many ways as I realised we are more alike than different. We talked about many concerns, and there was much alignment in our hopes and fears.

Meet Ethan.

His Mom Donna told me that he likes to "collect things". When I inquired as to what he likes to collect, Donna showed me his box of cleaning supply bottles, in many different colours.

"He likes Dettol and has to have a bottle in every colour. Then it was toothpaste boxes. He had a bottle of Comfort and I threw it out as his box of bottles was overflowing."

Ethan came home from school and asked "Comfort? Blue? Where??" straight away.

I wanted to connect with Ethan, and I have never met a kid yet that doesn't like to take a photo or two.

I handed him my iPhone and he started snapping pics straight away of his treasures.

Comfort, and toothpaste boxes. He was flicking through my editing tools on the phone and decided on black and white photos.

When I asked Donna what would she want people to know about Ethan this is what she said.

"Please don't underestimate Ethan because of his label"