NOTE: October is Down Syndrome Awareness Month
An OSERS Guest Blog post by Eliana Tardio, a mother with two children with Down syndrome. She also wrote a Guest Blog about her and her children in October 2016.
17 years ago, I was blessed to give birth to my first child, Emir. He was diagnosed in utero with Down syndrome but it was not until the moment that I held him in my arms that I realized one of the most powerful truths I share with new parents of kids with Down syndrome: He was simply perfect, and even though, I tried really hard to see the syndrome, all I was able to see was the most beautiful child of the world: my child.
Life is an unexpected ride for everyone but for some of us, it is even more unpredictable. Three years later and hoping to have the regular experience of expecting a child without doubt and anxiety, my ex-husband and I committed to a new pregnancy. We did everything right and as suggested by the doctors. The genetic test predicted a very low 5% of probability of having a second child with the same condition, and so we decided it was time to give Emir a brother or sister.
In 2007, my daughter Ayelen was born. Strong, beautiful, and with her eyes wide open. The only unexpected thing was that she was also born with Down syndrome. I can’t lie about it. I was completely destroyed at the moment, and I couldn’t avoid the typical question: why me, and even worse, why me again? Why my children?
It’s been 17 and 14 years respectively and I have not only have answered that question to myself but I have grown along with my children to help many families find their own answers. Mine is attached to a mission that I have learned to embrace and celebrate: a commitment to remind people that a diagnosis doesn’t define a person and that a person is a person first and always. Having two children with the same condition, all that I can say about Down syndrome is that it is undoubtedly a part of who they are that doesn’t define them. I raise a sweet and charismatic gentleman and a powerful and strong young girl. Both are completely different as individuals, both incredible alike and different like everyone else.
Inspired in all these years, below are 17 lessons year by year:
- Accept with love and patience your feelings as a parent as you grow along with your child.
- Their own time is perfect. Let go of absurd expectations and standards. Enjoy!
- Time to get ready for your child’s first transition. Be sure to send to school the best possible version of your child as you learn and understand how to be your own best version in your role as a parent and advocate.
- You are not alone. Take advantage of the resources available for you and your family. Get excited about learning more about your child’s right to a free appropriate education.
- Dream big and start learning about inclusion. Yes, inclusion is possible and necessary!
- Your child doesn’t need to be like anyone else to be amazing. Focus on your child as an individual and learn to communicate effectively so everybody remembers that.
- Focus on progress! It’s ok to feel anxious and get confused sometimes, but it’s necessary to stand up and keep fighting out of love.
- Surround yourself with positive people that can see the ability in the disability. Disability is always going to be a part of the equation, but the ability is the biggest piece and is right there, waiting to be uncovered and strengthened.
- As life keeps advancing, things don’t get easier but you will get stronger.
- When you start to feel comfortable, a new transition shakes your boat. Time to focus as you keep learning about middle school.
- That giant school looks like a monster. I know! I have been there twice, and all I can say is that with the right allies, that monster is going to become another opportunity for your child to grow and conquer.
- Empower your children to use their own voices. Regardless of your child’s ability to talk or express his or her ideas, your child has a right to have a voice. Work with your team on finding ways to make it happen.
- Is your child a teenager already? Time flies. Be sure to treat your child as the person he or she is, a teenager with needs, confusion, and going through a difficult time like any other child his or her age.
- Teenage years bring their own challenges and you may find yourself lost or desperate about some of them. Rely on the wisdom of other families who have gone through the same experience. Be honest, ask questions, and look for support.
- How are you doing? Yes, you! It applies since day one but is just a reminder that you are important, and you deserve love, compassion, and patience.
- Children don’t ask for permission to grow. Be sure you enjoy every single day. They are not small children anymore.
- It’s simply amazing to look back to realize how fear turned into contentment, strength, and passion for inclusion and diversity.
The best part of this. You can do it too!
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