I’m a single mom of 3. My youngest daughter Keli (19months) was born microcephalic and has a severe form of epilepsy, Lennox-Gastaut Syndrome, among other conditions. We’ve been in intensive care 9 times over the past 19 months of her life.
Keli’s older siblings, Jesse (12) and Isabella (7), have been amazing through all of it. They know what to look for seizure wise, they respond quickly if I need something, etc. I feel horrible being away from them when Keli is in the hospital & they are just troopers. I’m actually currently sitting in a hospital room writing this. I was on he phone with my son last night asking him how his day was and he told me this story… “I was in 5th period and my teachers assignment was to write down 3 wishes. Then she called on us to read aloud. My 3 wishes were 1. Keli didn’t have to deal with everything she does 2. Keli’s seizures would leave her alone 3. I wish Keli stays alive.” Of all things a 12 year old could wish for. My heart just melted.
Jesse and Isabella have been the best ride or die siblings to Keli. And this is why I believe they are siblings of the day everyday!
Jessica has been Billy’s #1 advocate since the day he was born. From age six, she was determined to be his best friend, caretaker, and protector. More than 20 years later, their bond remains equally strong–and Jessica remains equally committed to being Billy’s champion.
After living abroad and in several states throughout the U.S., Jessica moved back home to Chicago to be closer to Billy. Recently, she nominated him for her community’s “36 Under 36” list of notable young adults, and was honored to attend the awards reception with him. This summer, she published a picture book about her experiences growing up with a sib, and hopes it will help kids know they are not alone. (“Special Siblings: Growing up with a sibling who has special needs” is available on Amazon.)
Ava’s sister has a rare disease DHX-30! So rare the first symposium about it is in 3 weeks in Sept. I am going to have Ava fill this out……
I have been invited as a public speaker to attend and speak about sibling issues…. I was bullied my whole life, but I was also bullied about my sister! When that happened, I had enough! I was bullied on social media and I screen shot it, and started my own “awareness group” called Ava’s Advocacy Army! The Army gained a lot of attention and I earned a Civic responsibility award…. (After that I was asked to speak at the first symposium)
My sister is my best friend! I don’t feel like I have it hard because my sister is special…. life can just be hard…. seeing her sick, and when life gets scary! That’s when it’s hard…..
The truth about Down Syndrome: Nina changed our lives forever
Sometimes I can feel people staring or looking at my sister as we walk by and I know why – I bet they’re wondering what is wrong with her? I just wish they would know she is everything right in this world and there is nothing wrong with her. My 34-year-old sister, Nina, has Down Syndrome, and she is the best thing that ever happened to our family simply because she is an angel. Nina is beautiful inside out, I wish people would see that rather than compare her features or question her physical appearance. She has so many talents, but most importantly – she has the kindest heart you’ll ever meet, since when is that not beauty? Why won’t they understand?
Nina, was born on June 4th, 1985 in Homs, Syria. According to the World Health Organization, approximately one in every 1000 babies in the world is born with Down Syndrome. What doctors do not tell you is that Down Syndrome is not a sickness, not a disability and certainly not an obstacle – it simply should not affect any stage in a child’s life or the way we treat someone who has it.
In 1985, no tests in Syria could show if your unborn baby had an extra chromosome, so the doctor’s found out Nina had Down Syndrome after she was born and that is when they informed my mother.
My mother, Souad Al Jundi, always used to tell me that she and my sister went through so much to get to where they are today, they faced rejection, criticism and negativity for as long as they can remember. She stopped and gave up at nothing. My father and mother both showed us what unconditional love is, and what it really means to do anything for your family.
Believe it or not, during the 1980’s, some people used to tell my mother to keep Nina at home, and that she would not understand the concept of an outing if she came out with us or traveled with us. Of course, my mother would not listen, and she kept fighting it and explaining to people what Down Syndrome is and why they should not view it as a sickness, but nobody cared enough to understand.
Souad dedicated her whole life to raising awareness about children with special needs, encouraging parents to speak out about the subject and ask questions when they feel stuck – instead of giving up and isolating their children. She taught herself about it, she gave lectures about it and she toured the country and gave workshops about it. She eventually joined the family committee of the Special Olympics, and she taught English and arts to children with special needs – she even chose the topic “The Effectiveness of a Phonic Reading Method in Teach Reading Skills for Teenagers with Down Syndrome” for her PHD dissertation, which has been published online. She has redefined determination and resilience, and she is a hero for achieving what she has.
Nina and I started school together, but Nina eventually changed several schools until the teachers informed my mother that she will be needing a special educational program due to her having slower learning skills compared to the rest of her class. Eventually a school for special needs was opened in Damascus in 2005 and that is when she began to feel like she belonged to a growing community. Nina is probably the only person I know who fights to go to school even when she is so sick she cannot leave bed – education means everything to her.
Growing up with a sibling who has Down Syndrome is just the same as growing up with a sibling who does not have Down Syndrome – for those of you wondering, she never fell short of being there for my brother and I. Nina inspires us to be the best version of ourselves. Nina and I share clothes, we share midnight talks, we share our love for sports, we share friends, we shared a room and a beautiful childhood in Syria together. She will always be my big sister, someone I look up to and someone I will always share happy memories with, she means the world to me.
My father, Bassam Rifai, loves Nina with all his heart, he is her biggest fan and always makes sure Nina gets what her siblings get too. My brother, Shoueb, loves Nina so much and he cares for her in the most beautiful way. He was always overprotective of her and he always made sure we both know that whatever happens he will be there. He has a special place in Nina’s heart – they were born just a couple of years apart.
Nina grew up to speak three languages (English, Arabic and Bulgarian), she loves sports especially swimming, she loves horseback riding, she loves photography in fact the photos she took of Damascus were displayed and sold at an art gallery in Damascus. She loves art and is always inspired by it because my mother is a painter – we both used to sit in my mother’s art room for hours. Nina is so creative that anything her teachers ask her to do – she could turn it into a masterpiece. She also loves meeting new people and she loves to read despite that being a difficulty sometimes. You can always find Nina walking around with books.
Nina’s swimming coaches were so impressed by Nina’s performance during practice, they suggested that she should join the Special Olympics! Nina participated in her first Special Olympics in the Regional Games in Egypt and then next she joined the Games in the United Arab Emirates and Syria.
Nina later participated in her first International Special Olympics in Athens, Greece in 2011 and came home with a gold and a silver medal. She came home with at least one gold medal and one silver medal in swimming each time. She was so determined and such a hard worker, you could see tears of joy every time she comes back.
A few months after Nina returned home from Athens, the war in Syria was getting worse and the situation became unsafe. When there would be gunshots or explosions happening outside, Nina would get really frightened and cry endlessly, she was so confused.
Nina could not understand the concept of war and why it was happening in our country. We kept trying to hide the news from her. Nina was so sensitive about it she would cry every time someone would even say the word Damascus. She felt as if her dreams of swimming beside her teammates were over, her friends eventually moved to either Germany or Sweden. We eventually left Syria in 2012, and since then my family and I have been through so much – constantly moving from place to another. War is ugly, but what is uglier than war, is the trauma that comes along with it. We were all heartbroken and it took a long time for us to feel settled into our new homes.
Nina was heartbroken to leave her friends at school, her swimming team and everything she spent years trying to build. She had finally felt like she belongs to a community at school, a community that appreciates her.
Years have gone by, and now my father, mother and Nina have moved to Sofia, Bulgaria. Nina joined Maria’s World Foundation, a remarkable center that supports people with intellectual disabilities, and she instantly felt right at home. She started taking Bulgarian lessons again. She started going to horseback riding again and she joined the swimming team. Recently she was chosen to represent the Bulgarian national swimming team at the Special Olympics to be held in March 2019 – she is beyond happy about it.
Of all the things Nina loves, she loves Syria the most. And next year, she will not be able to represent her beloved country at the Olympics, however she is very happy to be able to represent her second home. Nina is now training for her competition.
I do not think I can ever be prouder to be called Nina’s sister. She is truly a star. Nina brightens up our lives with her smile, she manages to turn a frown into a smile even over the phone! She is beautiful beyond words and she just wants to be accepted, maybe it is time people start thinking about that. Maybe it is time we stop judging one another and just learn to appreciate one another, our differences are there and will always be there -but it is our choice to respect others and live with compassion.
These are joyous signature
moments most of the world anticipates every year. The chestnuts roasting. The warm
gingerbread cookies. The smell of fresh pine trees. All the gifts and the
givers. The resolutions and new beginnings are all exciting times that people cherish
for a lifetime.
Now, holidays can be full of happiness for most but for other people holidays can be filled with loss, memories, or sadness. Holidays can bring a strong sense of hopelessness to a person experiencing any of those things. Ever been in a crowd of people and felt alone?
needs families these down and depressing feelings sometimes become overwhelming.
It can be easy to compare our family life with the commercialized family image.
Here are some of my 2018 holiday moments that caused me to sit on a floor and
My father is no longer alive. The cinnamon broom stick he would purchase
annually to hide in an unsuspecting place for us to find by sniffing throughout
the house… Gone.
A beautiful holiday dinner set out with the best dishware is now
plastic plates, forks, spoons and chicken nuggets or pbj’s for Christian. While
his siblings complain that they just want pizza, wings or cereal because Christian
always gets to eat what he wants. Then we all end up sick. So, we all just end
up eating our preferred meal of choice with a smile.
A few invitations to friends’ holiday events to which I politely
decline because I know it is just not for ‘us’. Some people get offended when I
decline, but honestly there are things I consider before going to any activity
or event. Will the kids enjoy themselves? Will everyone feel comfortable? What if Christian starts seizing? What if
something gets broken or damaged? I would just rather sit at home with them and
rest because a holiday event sounds too much like work not fun.
There are so many things that go on within our families. So many tears are
masked by a smile. Well, I want you to know you are not alone. Special Needs
Siblings is an open and nonjudgmental community. We are not always going to
agree on methods or practices, but we can agree to LOVE.
agree that we are all doing our best.
Sometimes the best is simply making sure
everyone has brushed teeth and food to eat.
Be patient with yourself this year. We will be sharing stories and tips from siblings, parents, experts regarding different topics that effect special needs families. If you have ever experienced depression, isolation or loneliness during the holidays we would love to hear from you.
When it’s time to take to trains, planes, or automobiles in order to make it to vacations or family gatherings, parents of special needs children may stress over the idea of traveling, especially if their child also has incontinence. However, you don’t have to spend another holiday at home or miss out on that trip to the beach. With a little extra pre-trip planning your whole family will be on their way to enjoying one heck of a vacation!
Packing And Preparing For Travel
The first thing you should do is figure out how long you’ll be away, then make sure you pack enough incontinence products to cover each day and night. Consider switching to more absorbent pull-ups if your child will be going for longer periods of time without access to a restroom. Also, bring chux or bed pads to protect mattresses and seats.
While you’re out and about with your child, have a backpack that’s prepared with everything they may need. Pack diapers, a change of clothes, gloves, sanitary wipes, and a disposal bag to place any soiled items in. This way, if an accident occurs you’ll be able to clean up quickly.
Sometimes while traveling, only fatty fast foods or unhealthy snacks are available. These items can stress your child’s system, so be sure to have bottled water and healthy options available to help avoid accidents.
Check out maps of wherever you’re heading to figure out where the restrooms are ahead of time, and stop every few hours for bathroom breaks instead of waiting for the urge to strike.
You’ll also want to carry a list of your child’s medications from their doctor to show the Transportation Security Administration (TSA) and in case your child needs medical care away from home. When making flight plans, speak with an agent to make sure you and your child sit together and to make sure large medical equipment such as strollers, power chairs, walkers, and more can be stored on the plane. You can also ship items to your destination in advance to avoid having to travel with them. If you have a question about going through security with medical devices, call TSA or the airport ahead of time to learn about their screening procedures. Give yourself extra time in case something doesn’t go according to plan.
How To Make Your Child Feel Comfortable
Disrupting your child’s normal routine and changing their scenery can create stress and anxiety, so offer your support and encouragement to help them calmly travel. Explain exactly what’s going to happen to your child and why to prepare them for going through security or temporarily being separated in a line. Having fidget toys and activity books available can help comfort and entertain your child, and familiar toys and blankets may also help to comfort them.
Don’t rush, either. In bustling new locations, take the time to watch trains and planes arrive and take off. This will gradually let your child adjust to these new environments to prevent a sensory overload. Be sure to have noise-canceling headphones if they would prefer their favorite music over a noisy environment.
In the event of an accident, remain calm. Remind your child that it’s not their fault and that the day or trip is still going to be great. Then, provide as much privacy as possible for the cleanup. If possible, use a private family bathroom and don’t let relatives or friends know about the accident, as incontinence can be embarrassing.
Keep in mind that you’re going on a family trip. When your child with special needs is busy or asleep, take the time to give your partner and other children ample attention.
Don’t Overpay For Incontinence Supplies
By using a reliable durable medical equipment provider (DME), you can have your incontinence supplies covered by insurance, saving you tons each month to put towards your next vacation.
A quality supplier will navigate your insurance plan for you to determine what items are covered. Most plans will supply up to 200 diapers or catheters per month. Then they will make sure your items are shipped directly to your home in blank packaging, so no one has to know what’s inside and you can skip embarrassing trips to the store for diapers.
The right DME will also match you with a trained Incontinence Specialist to always assist with your individual needs. From ensuring that you confidently have properly fitting supplies to checking in with you on a monthly basis, they’ll be there to help. You don’t have to face incontinence alone or let it prevent your family from traveling – you just need to prepare.