Daniel and Friends Fund

Daniel and Friends Fund
The Daniel and Friends Fund...creating the platform for a stronger, more intimate special needs community

What is the Daniel and Friends Fund?

On the 23rd August 2013 little Daniel le Roux lost his lengthy and courageous battle with Leigh Syndrome, exactly one week after another little warrior, Mariele Laurie, succumbed to complications of the syndrome she suffered from, Aicardi-Goutieres Syndrome. Professor Pieter Fourie, whose care of and love for Daniel and Mariele had gone over and beyond anything which might be considered fair professional expectation, was determined not to allow the heartache and devastation caused by such tragedy to go without lending itself to a higher purpose...and so shortly after Mariele and Daniel had earned their angel wings, Professor Fourie shared with Kate and Lianie, their mothers, his vision for an organisation which would provide much-needed support for other parents who might be on a similar journey. Just a few short months later, the Daniel and Friends Fund was born guided by, by this time, three special needs mothers, each symbolic of the three friends who had helped Daniel in the Biblical passage from which Professor Fourie had drawn his inspiration.

Since their launch in February 2014, the Daniel and Friends Fund (a registered non-profit organisation) and the dedicated and driven people behind it, have provided not only the emotional and psychological support often sought by parents of children with special needs, but have also committed to ensuring that these parents have had access to the necessary knowledge and training in order to equip them to care for their children in the best possible way that they can. While largely focusing on top priority issues like providing extremely affordable CPR courses, free therapy sessions, psychology-based programs for the parents, occasional donations of items/equipment necessary for caring for a child with special needs...the importance of also creating a fundamental base from which friendships and 'normalcy' can stem has not gone overlooked. To this end, the Daniel and Friends Fund mommies are often treated on special days like Mother's Day and Women's Day and, where possible, these invitations are extended to the entire family for celebrations such as Mandela Day, Christmas Day, etc.

The purpose of our blog is not only to provide the opportunity for sponsors, supporters and followers to stay in touch with the various projects and events we're busy with but also, and just as importantly, to provide an insight for others into what life entails for families on a special needs journey, as well as enlightening fellow parents to the fact that this journey need not be travelled alone...

Saturday, April 16, 2016

Caring For Siblings of Children with Special Needs / Sibling Day April 2016

It goes without saying that caring for your child with special needs is a journey often filled with uncertainty, self-doubt and despair...all of which become more challenging when your child with special needs has neuro-typical siblings.  Knowing that those neuro-typical children often experience their own significant challenges as a result of having a brother or sister who is differently-abled, the Daniel and Friends Fund is passionate about dedicating a day, as often as we can, to "our siblings".  Exchanging bowling balls and pins for putt-putt clubs and the green this time round, the conservative couple of hours where the focus was just on the siblings was, yet again, a gesture rewarded with carefree smiles and a thoroughly enjoyable morning. 

Before we head off to the pictures, an informative and easy-read article from KidsHealth :

"As a parent, you want to give equal attention to all of your children. But when parenting a child with special needs, that can be hard. Your child with a disability needs you. But so do his or her siblings. It may feel like there's never enough of your attention to go around — and your other kids might begin to feel left out.  It can help to understand what your typically developing child or teen might be thinking and feeling. Kids love their siblings. They want to understand why there are some things that a sibling with a disability cannot do, and how they can help. By answering questions in an age-appropriate way and being open and honest, you can help ease worries, clear up any confusion, and maybe even give your other kids a chance to help out. Kids who feel understood, loved, and secure about their place in the family can thrive — and the bond between siblings can grow.
Here's what might come up with kids at different ages and stages of development.

Preschoolers (Ages 3 to 5)

By nature, preschoolers feel that everything is about them and what they want — from the game they want to play to the toy they ask for at the store. So helping them understand why a sibling might need more of your more time or attention can be hard.  It can help to set aside one-on-one time with your child. This can be a challenge, but even a few minutes spent playing ball or allowing your little one to "help" you in the kitchen at mealtime can provide the mommy or daddy time that your child needs.
When kids ask about their sibling's abilities, explain the condition using simple language in a way they can understand. Use real words, like "cerebral palsy" instead of "boo boo." This prevents confusion in kids who get their own cuts and scrapes — you don't want them to be overly concerned about a bump on the head.  Say something like, "Your brother has trouble walking because he has cerebral palsy." If your child asks, "What is cerebral palsy?," state in simple terms that it's a condition that makes it harder for a child to do the same things other kids do.  Kids this age are also "magical thinkers" — so, the drink poured at the tea party is very hot and the monsters under the bed are very real. When kids have a sibling with special needs, this type of thinking can mean that they worry that the disability is an illness, like the common cold. Reassure your child that he or she cannot "catch" a condition like cerebral palsy, and that nothing either child did created the condition — it is no one's "fault."

Big Kids (Ages 6 to 12)

By elementary school, kids start to better understand the "why" of a diagnosis. Expect that you will get more complicated questions, and don't be afraid to answer them.  For example, for questions about a sibling with limited mobility, your explanation might expand to "His legs don't work because he was born with a health problem." The next question might be, "Will he ever walk?," to which you need to answer honestly: "I don't know if he will, but we're going to try to help him do that. That's why he has therapy."  Your child might be sad or worried about his or her sibling's health. But playing together and enjoying each other's company can help. Encourage your typically developing child to read books to his or her sibling, build block towers together, and do craft activities with fingerpaint or clay.  This is also the age when kids start having to explain their sibling's condition to their friends. Some friends might ask rude questions or even participate in bullying behavior such as name-calling, which can leave your child feeling embarrassed, angry, or guilty.  You can help your child weather these encounters by rehearsing some conversations. If someone asks, "What's wrong with your sister?," for example, your child can simply say: "She has cerebral palsy." Or if a classmate uses an unkind term to describe the sibling with special needs, let your other kids know that as hard as it is, they must not act out in anger. Instead, help them explain the situation: "It's harder for my sister to learn new things than it is for you or me, but that doesn't make it OK to say mean things about her."  Sibling rivalry also builds at this age, so don't be surprised if kids act jealous of their brother or sister with special needs. After all, they see their sibling getting extra attention, or being allowed to stay up later or excused from doing chores.  Comparisons are normal, but explain that while it seems unfair, this is simply the way it has to be. Just as a child might feel that the sibling is getting extra attention, there are many opportunities that the sibling with special needs cannot have. Fair does not always mean equal.

Teens (Ages 13 and Up)

During the teen years, siblings often feel increased pressure to care for their siblings with special needs. You might rely on your teen to babysit or help more with chores around the house. Teens might feel pressure to take on more responsibility than they should at this age.
As a parent, make sure you are not asking too much of your teen. Make certain responsibilities, such as babysitting, a choice. This will help teens feel that they have control over how much they help out. For example: "It would be great if you could watch your sister, but if you want to go out with your friends, that's OK."  Also, be sure that you don't expect too much when it comes to chores, schoolwork, or extracurricular activities. Typically developing children sometimes feel extra pressure to be perfect so that their parents don't have to worry about them.  Teens are struggling with their independence from parents. And a teen who has a sibling with special needs also may struggle with the idea of life apart from that sibling. Let your teen know that wanting more independence and experiencing more of the world is normal, healthy, and encouraged, within safe limits.  As teens near adulthood, they might start to worry about the future, and wonder who is going to help care for the sibling once they've moved out — or if something happens to you. Reassure your teen that whatever the future holds, help with caring for his or her sibling will depend on how much your teen is comfortable taking on. Then, have a plan ready for when changes come that will benefit all members of the family.

Handling Strong Emotions

Just as parenting a child with special needs can be joyful and frustrating, kids and teens who have a brother or sister with special needs will have ups and downs.  Some siblings roll with the punches and don't let much bother them, while others are more sensitive and take things to heart. These kids need healthy ways to work through their emotions. Writing in a journal, being physically active, or participating in creative arts like dance or music are good ways to handle strong emotions.  But if you notice changes in your child's sleep routine, appetite, mood, or behavior, it could be a sign of anxiety, depression, or another problem. If this happens, seek help from a mental health professional for your child."
Dad, Toby, taking on both sons...Caleb and Troy. Troy ready
with his "game face".
And from the get-go it was down to serious competitive business
with the dads as Bernard Smit gentle coaxes his ball along.

One of the many benefits of our Sibling Day - to encourage
siblings to form bonds with other siblings...sometimes simply
knowing that there is someone experiencing the same things
you are going through, is a comfort all on its own.

A bit of precious one-on-one coaching between
father and son.

Nina's lovely champion, Saskia...at Daniel and Friends Fund
friendship knows no age difference.

And the overall winner of the day - Well Done Daniel Smit!


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