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Advocate Down Syndrome

#29DaysofAwareness February 8th

This post for the #29DaysofAwareness is a guest post written by a friend as her final paper for one of her courses towards her degree in Special Education. 

Joy Liza Elmido-Formoso is a co-parent in The Down Syndrome Association of the Philippines, and she is momma to Angel. She decided to go back to school for her Special Education Degree to better equip and empower herself as a parent. She has shared with me that the learning in her classes of 20 somethings and her professors has been both ways, because she has been able to provide great insight for the students and professors alike. Her unique point of view as a parent of a child with Down Syndrome has offered her classmates an education of a different kind.

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Joy has hopes of managing or opening up her own SPED center one day. She has see that many children with special needs cannot afford early intervention to get the head start on life that they desperately need. A SPED center with more affordable rates would make therapies more accessible for parents who want to start their children with the right tools in their development.

ALL I REALLY NEED TO KNOW, I LEARNED THROUGH MY SPECIAL DAUGHTER

In his best-selling book entitled “All I really need to know I learned in Kindergarten,” Robert Fulghum advised his readers to look no further than kindergarten for most of the important lessons they needed for life.

As a special parent, I will attempt to make a list of the things I learned and realized for the past 6 years that helped me be to be a better parent to my special daughter.

  1. Intervene early. The first 3 years is a window of opportunity for our special children because of the plasticity of their brain thus early intervention should be implemented ASAP because it will surely benefit your child’s future.
  2. Our Family. It is essential that my whole family is involved in the development of our special daughter. There should be acceptance from them, taking into consideration their concerns and suggestions tooCSC_8630 copy
  3. Nature vs. Nurture. By nature my special daughter was born with an extra chromosome that makes her very fragile. But I also learned that if I give her the right kind of nurturing through proper care and unconditional love, she will surely bloom and blend well with others.
  4. Knowledge is power! I hunger for more information about my child’s condition so I enrolled in graduate studies major in Special Education. I realized that the more I read and learn about my child’s condition, the more confident and empower I become as a special parent.
  5. It takes a village to raise my special child. Not one professional can cater to all the needs of my special child. Parent’s collaboration with doctors, therapists, SPED teachers and other professionals are highly recommended.
  6. Parents as teachers. Parents make the best teachers but there is no such a thing as perfect parents so we should not fear to commit mistakes.52 copy
  7. Know that every child is unique. The development and learning vary from special child to another because all children have their own strengths, needs and interests.
  8. Discipline is both an art and a science. The art of applying it greatly depends on your family. It’s a trial and error for each child is unique so we need to try different approaches. Be creative; consider interests and learning style because success rate is higher once we get their attention.
  9. Join parent support groups. Groups like DSAPI (Down Syndrome Association of the Philippines) equip special parents with right knowledge and approach, educating and empowering special parents with their various seminars and events.
  10. Not a factory defect. God created everyone with a purpose and children with disabilities are NOT ‘factory-defects’. I believe that God is still perfect and does not make mistakes in creating all His children.angel shirt copy
  11. Dream child. Motherhood should really be about raising, caring and loving the child given to us by God, and NOT the child we thought or dream of having.
  12. Standing out expectations. We live in a world when everyone expects our children to always fit in a group, but as a special parent, I should teach my children to just stay the way they are, special and gifted too in their own little ways.
  13. The teacher and the student. My whole world literally turned upside down when my special daughter came into our family. She eventually becomes my teacher and I became her student. Because through her I realized that they are so many things in my life that I need to UN-learn, RE-learn and MUST-learn so that I can be an effective parent to her by providing every opportunity she deserves in this world.header JOY
  14. Embrace the experience. When I found out my daughter was special, I cried and asked ‘Lord, why me?’ After six long years of struggling and experiencing pain and joy, being in and out of hospitals and doing weekend therapies together–my daughter has taught me on how to be a fighter at a very young age. The question ‘why me’ has turned to ‘why NOT me?’ because being a special parent taught me to never give up. It has exposed me to a special world where unconditional love really exists.

I think the biggest point that Joy made, which resonates with me is number twelve. Even if I spent more than four years learning how to be an effective teacher, nothing could have prepared me for the education my children provide for me on a daily basis. Each of my kids have their own strengths and needs. 

This fact can sometimes challenge me. It can cause me to pause and dig deep. I have to get creative when parenting all of my children and the different ways they learn. Even their love languages are different, which again, is a good reminder for me to be present and aware. 

Gelli has gifted me an awareness that did not exist before…I’m thankful for that.

I am also thankful for friends and acquaintances like Nieves who wrote a guest post a couple of days ago, and for Joy who wrote for me, today. Because of support groups like DSAPI which is listed in number nine, I have been able to ask moms, dads, and siblings of kids who are members of our group to share their stories with you.  In the days and weeks after a shocking diagnosis, these support groups are our lifelines that lead to acceptance and knowing that we are not in this alone.

Thanks Joy for sharing Angel with my readers. I’m looking forward to seeing you at Happy Walk!

If you are interested  in sharing your story here for #29DaysofAwareness or The Down Syndrome Diary Philippines, please do drop me a line. I would love to hear from you.

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