'When they feel the love, they will flourish'
Five years ago, Lynn Barghout Jafar's life changed when her daughter was born with a rare genetic disorder. Being diagnosed with CDKL5 deficiency means Alia struggles with epilepsy almost daily, and is unable to walk or talk. After much searching for answers and therapies, Lynn, 34, and her husband Majid established High Hopes Dubai Pediatric Therapy Center to cater to the needs of such children with complex special needs. Here, she addresses what it takes to help these kids grow.
There's a degree of denial that most parents of children with special needs start out with when they first receive a diagnosis. Was that true for you too?
Of course. That is completely natural for parents of special needs children. There are different phases that families go through after a diagnosis but, ultimately, peace comes when we accept what we have been dealt. All of us love our children unconditionally, and want the best for them, regardless of ability. So, a special needs parent needs to combine acceptance of the situation today with doing everything possible for a better tomorrow - which is actually a good way to live life in general.
A lot of parents find their life paths shift entirely after a diagnosis of special needs. Many mums, especially, go from corporate careers to full-time carers. What advice can you offer those dealing with this transition?
Remember that your child is a blessing. Alia has brought so much love into our lives and forced us to rethink what really matters. Little things no longer bother us. We have also learned to appreciate the small gains. But, most importantly, she teaches us empathy and this is a great trait to have and share. Life is bittersweet, but know that a life that involves a struggle to help others is a worthy one. It's a gift that our children with special needs give us.
People of determination often struggle with a lot of public perceptions. Are there any specific ones you'd like to debunk?
There are many misconceptions about children with rare diseases and other conditions. The most important one is to not look at their condition as a disability. The UAE calls them People of Determination, and I think that is such a moving way to consider them. Today, I see clearly that the word 'disabled' is imposed on us by society. Yes, Alia has a medical condition, but she is my determined one and I am so proud of what she achieves. She made my husband and I better versions of ourselves - and has given us a purpose to help children like her living with complex conditions.
So, that is probably the most crucial aspect to consider: don't look at what they can't do, look at the possibilities and the things that they can do or have learned to do. When you do that, the world looks so different.
Not every parent of someone with special needs will go on to change the world for other children, but they can change the world for their child. Any ideas for how they can do so?
The world is full of possibilities. Make sure your child can experience and enjoy as many of them as possible. Include them in everything because when they feel the love, they will flourish because of it.