This week we want to introduce Suj. Suj will be 33 years old on April 22nd. His mother recalls the day of his birth and how the news of his syndrome was delivered to them, "The news was abruptly communicated right in the delivery room by the medical team, who left the room a couple of minutes later with no words of support. No resources were provided to us."
Those brief moments are the things that inspire parents to make a difference for the ones to come, and in the path of growth of Suj as a child; his mother Sindoor, who's also a doctor, started a support group for parents called Global Connection. "This is my second family that brings sunshine to my gray days."
Almost 33 years later, that same confusing news marks the beginning of an unimaginable life. Great things have happened, doubts and concerns have turned into the strength to provide Suj with the tools to discover his personal talents and to learn to shine on his own. Before we go further in this article, yes, there's something different between Suj and a typical person, but it's not his extra chromosome. Instead, his differences are his incredible passion to perform, followed by a interminable list of achievements and awards that credit him as musical wonder.
Recently I was part of a great discussion between mothers about how to handle work when you have a child with Down syndrome. Lots of opinions and personal stories were brought to the table; we ended with a variety of different points of view. All of them are valid and realistic, as everyone's experiences are unique and based on their personal needs.
For many of these moms who are divorced or single, working after having their babies wasn't a choice but an immediate need. Some others don't depend 100% on their individual incomes, but they never gave up on the dream of pursuing their professional careers, and have found the way to balance both work and motherhood.
The devastating news of learning that your child has Down syndrome is not just related concerns about his development or learning challenges. There are all the justifiable fears that come with learning about the medical risks associated with this extra chromosome. One of the more frightening ones is that children with Down syndrome have a 20% greater risk of developing leukemia, compared to typical children.
The signs may be confusing, as many children with Down syndrome have constant respiratory infections during their first months of life. This situation may distract doctors from looking for the signs of leukemia and cause parents to lose important time that's critical to dealing with and treating this disease. Here, parents who have lived with this experience offer their stories and insights for families who are unaware of the signs, or who have just started fighting the battle with their own child.
Life doesn't stop when your child is diagnosed with Down syndrome. The paper confirming the existence of an extra chromosome is only the beginning of an unexpected journey. The challenges keep coming, and they are not always related to your child's condition, but can certainly affect your future as a family.
This week we want to share two inspirational stories of mothers of children with Down syndrome who faced their own diagnoses: both of them were diagnosed with cancer after their kids were born. Their stories of strength remind all of us that love is powerful and challenges make us grow and be grateful for life.
As I always tell parents, no one can tell you how to feel when your child is diagnosed with Down syndrome or special needs of any kind. There is no "proper" or "ideal" reaction, and crying less or more than anybody else doesn't make you a better or worse parent. This situation is already confusing so just imagine how hard it may be for families who learn that their child may have a second diagnosis, Autism.
For years the dual diagnosis of Down syndrome and Autism has been ignored. Many times professionals think that behavioral and developmental challenges in some children with Down syndrome are simply related to their extra chromosome. Recently however, with the increase in the number of kids being diagnosed with Autism, a new reality has arrived. Now, the dual diagnosis of both conditions in some kids is being recognized by the medical and behavioral communities as Down syndrome and Autism Spectrum Diagnosis, commonly referred to as DS-ASD.
Personally, I have to admit that having two children with Down syndrome has been a very natural experience to me. As both of my children have the same condition, I haven't experienced the tough situation that many parents face when they have both sides of the coin at home with both a typical child and a child with Down syndrome, or any other significant medical or developmental diagnosis.
There is a delicate balance needed to meet the personal needs of the typical child, as it's all too easy to neglect them while providing increased support to your child with Down syndrome. There's no doubt that the love for both children is the exact same, but their needs can be entirely different and a family can get thrown out of balance at any time. Often, the child with special needs requires more attention, and his needs always seem to be urgent. This week we're discussing this topic and we bring our readers a beautiful story of a mom who has learned to involve everyone, making her family work together as a united team.
Just as there are parents who see World Down Syndrome Day as an opportunity to celebrate the lives of their children with Down syndrome, there are others who consider this celebration an event that promotes exclusion and does more harm than good.
It's not surprising to see differences within this community. Parents of children with Down syndrome expect society to look at them as typical parents, as they expect their kids to be seen as typical people. And everyone has the right to think differently and to be respected for it.
Siblings are an equal gift to one another, no matter how many chromosomes they have. Siblings with or without Down syndrome offer amazing stories of love and learning as they grow up together.
If becoming the parent of a child with Down syndrome is totally unexpected, it's the same when you become a brother or sister of one. Older siblings may face a mix of feelings, and need support when their sibling arrives.
It's different when your new, "typical" baby is welcomed to a home where he has an older brother or sister with Down syndrome. Growing up together as siblings is pretty natural, but when they grow up and realize the differences, it's the time to openly talk about the meaning of Down syndrome.
In both cases there may be many questions, concerns or confusion brought to the parents by their kids. All these feelings need to be addressed in order to find the balance between raising typical children and children with special needs of any kind, included children with Down syndrome.
We are glad to bring these series of articles to celebrate family, and that include important information, responses to common concerns and stories from families around the world.
Comments from and conversations with families always give me a broader perspective of how parents perceive certain concepts. "Inclusion" is one of them. It seems to be that for many parents, countries like the United States and Spain are considered by foreigners as "inclusive" countries. And since they may be challenged to find an inclusive educational or social environment in their own countries, they feel that moving to one of these inclusive countries would be the answer to all their needs.
Inclusion is more than a law. It's also not a physical location, and it's definitely not a created place to where parents can arrive and relax. It's instead a part of the lives of parents and educators. It's a permanent challenge and as parents, it is the self-determination to continue to educate people around us, starting with ourselves. Inclusion starts in the heart of a parent, and evolves when we learn to be objective and realistic about our kids' abilities.
I've had two totally different experiences with both of my kids when they started school. They both have Down syndrome, so I thought the processes might have been similar, but they weren't. And the difference was not the system nor the school, but my own perception of inclusion, and a new focus on celebrating their abilities, instead of being scared of their disability.
My son was a victim of my own ignorance. When he started school, I didn't know much about laws, but I knew even less of the benefits of inclusion for a child with Down syndrome. On top of my parental fears of him being rejected, pointed at or mistreated, he was my first child in this country that now is my home, a country that I didn't know much about at the time.
However, I'm glad to say that today, my son is close to 10 years old, and for two years he's been in a mainstream classroom where he has bloomed and has become part of a group where he's accepted and respected.