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Advocating For Kids With Special Needs

Wed, March 10, 2021 11:26 AM | Valerie Hines (Administrator)

Being a parent is hard.

But being a parent to multiple special needs children is 10x harder.  

My name is Lizy Piñon and I am a mom to Gabriel (16), twins Amelia and Alexander (DOB 11/10/09), and triplets Felicita, Frida, and Santiago (8).   I am a Puertorican that was born and raised in Chicago and met my husband, Santiago, over 20 years ago. We moved to Texas when Texas Christian University offered him a job about a decade ago.   He teaches religion and ethics.   But more importantly, he is an amazing husband and dad.  I am an educator and am currently working on my education leadership doctorate and superintendent certificate at Texas Christian University.   

 

As a child, I had a dream of having a home full of children. While my friends wanted to be teachers, lawyers, mechanics, etc… I just wanted to be a mom.  My mom was such a nurturing and caring person and I wanted to be just like her when I grew up.  She was a kindergarten teacher in Chicago Public Schools for over 30 years.   You do know that Kindergarten teachers are like the best kind of people in the world, right?  She was my very best friend!  I lost her a couple of years ago. 

When Santiago and I talked about having children we had decided before we even got married that we would adopt our first child, have one (ONE!!!)  biological child, and adopt our last.  This was our game plan. We were very goal-focused and had this all drawn up in our family plan. So we adopted Gabe at age 6 (adoption is a whole other post), waited a bit because I was working on my masters in Education and working full time as an educator, and then when we decided to try to have a child, we ran into fertility issues (also another blog post).  In 2010 we welcomed to the world  Amelia and Alexander at 22 weeks gestation.   They graced us with their amazing presence for about half an hour.  We then needed some time to grieve after such a huge loss and we decided we would wait a while on growing our family.   Also, at this time our oldest was needing our full attention so we decided to wait.

Enter, special needs mom mode.  I was introduced to a written piece named “Welcome to Holland.” 


They told us when we adopted Gabe that he had no special needs; he just needed a loving home and he would be fine. I was thrown headfirst into the special needs world with a very complicated little boy that had been in 8 homes before he finally reached ours at age 5. Gabe was kicked out of multiple daycares and private kindergartens and entered public school kindergarten in a behavioral classroom where they couldn’t just kick him out.  I would get multiple calls during the day from teachers asking me what was wrong with him.  I would tell them “You are the special education teachers, you figure it out and let me know when you do!”  

In my humble opinion, the three most important things to do as a special needs mom are to first educate yourself, next get support from others who’ve walked this road before you, and finally become an advocate for your child. 

#1 - Educate yourself:   This is when I got important lesson #1 in being a special needs momma.  I needed to be the one researching and helping to figure out the puzzle.  I needed to be the one talking to doctors and therapists and coming to some kind of conclusion.  I needed to quickly become the expert and educate all those that worked with him on how to help him.   I was the one that could help them connect the dots between teachers, doctors, specialists, and therapists. 

Then came our 25-week old triplets after a picture-perfect pregnancy with no real health issues.  They came fast with no time to spare.   Felicita, Frida & Santiago were born with a tiny squeal weighing 1 lb 4 oz to 1 lb 8 oz each.  Felicita & Frida are identical twins and Santiago is the fraternal triplet.  A fun fact is that the girls are both twins and triplets.  They spent between 97-115 days in NICU and went through ventilators, oscillators, transfusions, jaundice, PDA ligations, ROP eye surgery, brain scans (with brain bleeds of all kinds),  hernia repair, failed hearing test, etc.  They thankfully survived but with all kinds of complications.   We arrived shortly afterward in Texas with these tiny miracles. But we had no family or friends nearby.   I needed to get educated about the triplets’ multiple conditions and figure out the best services for them. 

#2 Join ALL social media support groups or real-life support groups: I realized that other moms who had been where I was  were the best source of information on what my children needed.   I spent hours on social media talking to other moms in the area.   They gave me the names of the best local doctors, therapists, and specialists that I needed for the triplets.  They also taught me the lingo, the special needs language I needed to know and use when calling for information, appointments, and services.  I would call and demand to have them be seen by the best doctor in the department, best therapists (even if I had to wait a bit longer to be seen), and learned what questions I needed to ask to get access to the best treatments.   When I first got to Texas I had the triplets each seen by a different neurologist and I told them I was checking to see which was the best one.  I am now lucky to have found the very best one in the nation for cerebral palsy up in Plano, TX.   I may not be liked, but I sure was respected as a voice for my kids.   

#3 Advocate: Last and final thought is that you know your child the best. You are their very best advocate at home, school, the community, and wherever they attend. I have involved myself in school committees, at Cook Children Hospital and MHMR (My Health My Resources) - ECI (Early Childhood Intervention).  I do this to keep my eyes and ears open so I know what services or programs my children may need now or in the future.  We also need to share their accomplishments and their challenges so others also become allies to help in the good fight.  I am thankful for all those friends that have helped lighten my load and have fought for them next to me, like their wonderful daddy.   And some days the fight feels like a hundred pounds as I lift my 65 lbs daughter from her bed to the toilet, or hold my 200 lb son tight as he rants about some injustice in school so he will not self-harm and have to be taken to the local mental health hospital via a police ride.  But when I see her eyes light up as she twirls in her wheelchair after learning a new dance step in her Ayita wheelchair dance team or when I see that he is able to better express himself in an artwork he completed,  then I know that tomorrow will be better and the world is a better place because they exist in it. 

It is not an easy path but I have loved every moment of being a special needs mom.  I have entered a new world, made new friends, and am a different person than before they each entered my life.   So if you are a special needs mom or dad, go out and educate yourself, make new friends, and fight hard for your children!   Nothing special about the mom and dad we are.  We have simply and humbly had to learn to be the special parent that our amazing children Gabriel, Felicita, Frida & Santiago need.  Take the time to enjoy the trip to Holland! 


Fort Worth Mothers of Multiples

P.O. Box 123874

Fort Worth, Texas 76121

Fort Worth Mothers of Multiples is a 501(c)(3) non-profit organization.


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