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.
When parents and educators talk about the development of people with Down syndrome, we have to be very careful that the goals we set for our children are not based on other people´s achievements. Yes, it's true that more and more people with Down syndrome are going to college. Many of them have achieved what was considered unachievable years ago; they have graduated from college and are living fairly independent lives. But this situation doesn't mean that every person with Down syndrome will do the same, or that they need to in order to be happy.
We all want our children to be respected for their abilities. We don't want people to set limits for them, without giving them the opportunity to demonstrate all the things they are capable of. But if we lose our objectivity in the process of motivating them, we can hurt instead of help them to develop their full potential.
Even though we all know that all children with Down syndrome may require physical, occupational and language/speech therapy during their development or maybe throughout their life, more therapy doesn't necessarily equal more advancement and should never be considered a way to fix a child. Therapy is a form of guidance that reinforces your child's development, and at the same time teaches you, as a parent, how to integrate this guidance into your child's natural routines.
Your Local Early Intervention Program offers parent training, local events and interaction with other families through community activities; these events are specially created to promote inclusion and create awareness of people with special needs. Here you can learn more about these services.
If you live in United States and you are the parent of a child with Down syndrome younger than 3 years old, you may already know that the first step is to enroll your child in your local Early Intervention Program, but what happens next?
When you child is about to turn 3 years old, your family will be contacted by the Early Intervention Program to start the transition process to the school system. This is not an compulsory step and you may choose to send or not to send your child for pre-school services, however, pre-school is meant to provide your child with the proper tools to get ready for a more inclusive setting when he turns 5 years old.
Something I've learned through the years, and thanks to my interactions with thousands of parents around the world, is that there is not a single answer for the same question. Every parent has a unique way of facing challenges. This is the case of getting pregnant again after having a child with Down syndrome. There may be hundreds of thousands of them who are living through the same experience at the same time, but what makes each situation different is the influence of the parents' attitudes and beliefs. There's never a wrong answer when we act out of love.
In my personal case, after my first child, Emir, was born with Down syndrome, we decided to get pregnant again. We also decided not to have an amniocentesis. Yes, I was scared of having a second child with Down syndrome, but I always had faith in love, and I always knew that the challenges are never stronger than unconditional love. I think that's actually the best lesson that any person can learn from parenthood.
Something that I´ve learned throughout the years, is that I'm the expert in the life of my own children.
Their diagnosis of Down syndrome, doesn't make them like anyone else. They are unique individuals, and no one knows them as well as I do.
As a parent you are the expert in the life of your child with Down syndrome too. There's no college for parents, we all learn in the process, but especially when we're devoted to our kids.
This is my personal story on how raising two children with Down syndrome, granted me a degree that I never expected to earn.
This is a frequent question from relatives, friends and/or community members. What to tell a parent whose child was born with Down syndrome. Usually the diagnosis is unexpected, and it's common for parents and their families or friends, to get surprised by the news, and not to know what to say or how to react.
We make common mistakes when we try to offer consolation to new parents, instead of being objective and reminding them that their child is a child first, and even if they don't know yet how to deal with the diagnosis, their love and dedication are the most important tools to get ready to do the best for their newborn.
This article brings 6 Things that Every Parent Should Be Told When Having a Child with Down syndrome. These are common fears, and loving and honest responses.
Let's start with this phrase: "Congratulations on the birth of your child" Yes, your baby has Down syndrome, but he's a child first. No one will be a better child for you, and no one will be a better parent for him.
Education has been crucial at the time of opening new opportunities for people with Down syndrome. This extends to orphaned children with Down syndrome as more and more of them are being adopted every day.
Several organizations worldwide promote the adoption of kids with Down syndrome, by creating fund raising events to help future parents cover the costs of adoption and the adaptation process of the kids to their new homes.
In this article, you'll find two beautiful stories of two different moms. One of them, who decided to adopt a second child, this time a newborn with Down syndrome; the other one, a biological mom of a child with Down syndrome, who chose to adopt a second child with the same condition, this time a girl.
If you are considering to adopt a child, and as the mom of two biological children with Down syndrome; I can only tell you that children with Down syndrome are not different than any other child. All those apparent challenges, are just unknown things that become part of our lives, and don't limit them, but instead empower us as a family.
When my first child was born, and after confirming his diagnosis of Down syndrome, many people told me that parents of kids with Down syndrome were chosen by God to take care of His most special angels. That is one of many other prejudices. To listen that your child may be an angel or is a "special child" is easier to digest than to hear people talking of him in rough or sarcastic terms. However, they are both prejudices, and both should be abolished at the time of referring to people with disabilities.
I have seen a positive change during the last 10 years. There are great organizations that support and promote "people first language". Medical terms have been updated to a human and respectful terminology that talks about people living with intellectual disabilities, instead of diminishing them by using words like "retarded"
That's why it is so important for me to share this article that talks about Down syndrome in 2014. Down syndrome is genetically the same, but perception of people with Down syndrome has evolved, and the only way to promote this evolution and keep it going is to educate about "people first language". We are all people first. People with individual needs; as everyone else.