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Real Moms, Real Talk:
Veronica Villaseñor

Raising a child with special needs

Here is another Amazing story of love and sacrifice from another totally Amazing Mom, Veronica Villaseñor!  
How she ever found the balance, I'll never know.  But let's all learn something from her story and her experience, and go out there feeling inspired, renewed, and thankful for all (and who) we have!
Just in time for Christmas - never forget The Reason for The Season!
1. Tell us a little bit about yourself and your family.
I am a parent of four; a set of twins that are six years old, a three year old, and my 22 year old, Esteban, who was diagnosed Autism.  I have raised Esteban since he was six years old, as both his parents are deceased and I am his maternal Aunt.  
I have been happily married for 21 years, since 1995.  I enjoy traveling and being with my family.
Due to my vested interest in Autism, I worked at the UC Davis M.I.N.D. Institute as a Clinical Research Coordinator for seven years.  I have also mentored and advocated for services for my own child and for others.  With nearly three decades of extensive experience of state service and in the private sector, I hold a Bachelor’s Degree in Business Administration.  I am currently a Public Participation Specialist for the last six years; I enjoy working with the public promoting 2-way communication to ensure public involvement.  I have evolved from a clinical perspective to an environmental regulator with Department of Toxic Substances Control (DTSC).
I am grateful for having children; they have clearly navigated my career interest and my passion for helping others.  They have opened doors that may have never been opened if I had not opened my own heart to understanding what unconditional love truly is.  

2.  What was your experience being a first-time (Amazing) Mom to a child with special needs? 

I had no gauge, so nothing to compare it to.  Plus, I had been married to David for 5 years and we had just had a miscarriage a month after Esteban came to live with us.  So I was completely open for loving a child, and it was totally healing for me to focus on his needs.

It's true that in giving you truly heal whatever pain or feelings you have.  You totally focus on giving, but unknowingly I was also healing my pain of both losses; the loss of my sister and my own loss of my expectations for having a child. 

I must say, I focused so hard on Esteban that I forgot about my own needs of having my own child until he was 18 years old and no longer had programs or the focus of academics.  He was pretty much independent when the idea of having a child even crossed my mind again. 

3. How did you ensure Self-care and Self-Love in your Life to help you get through your trials and tribulations while raising your son?  What are some examples of your Self-care regimens/routines? 
I Prayed a lot and cried, I took one day at time and never tried looking too far ahead.  I immersed myself in organizations such as Families for Early Autism Treatment (FEAT) to understand my nephew's disability, and met many folks whom were trail blazers.  I made friends quickly to help educate myself.  
During that time, my mother was alive so she helped in caring for Esteban on the weekends.  But we eventually got to a point where Esteban was more independent and helpful, and most of the time it was nice to have the extra hands to help with the twins once they arrived.

Since Esteban received death benefits from his mother and Social Security for being disabled, I would hire various individuals for extra help in teaching Esteban life skills.  For example, family or students in the field who had interests in special needs and could support with extra curricular activities, such as learning socialization and group outings with other higher functioning individuals.  

I really see myself, even with my typically developing kids, as their manager of activities, so I multitasked and had the funding that allowed me to hire extra help.  Plus, I had friends who were involved in FEAT who helped me with my Individualized Educational Program (IEP) and in attaining an Applied Behavior Analysis (ABA) program.  It was a battle with the school district to provide the funding for aids to come into our home in the mornings and after school.  
Additional funding came from the Regional Autism Assistance Program (RAP), and that allowed Esteban to acquire more life skills while allowing me to be out at times, giving me respite.  I used that extra money to hire individuals to ensure Esteban was learning things, because I felt it was my job to help him become a productive member of society as his guardian and as his maternal aunt.  

I think a lot of individuals "check out" and just use funding for a well-needed break, but I used the funding as another opportunity to help Esteban and also to give myself a break.  More importantly, I couldn’t rest unless I knew it was benefiting my nephew.  I usually would hire teachers whom were unemployed but could offer Esteban opportunities the average care giver was unable to.  I never hired anyone that just wanted job; the individual had to have a goal and had to have the passion, even if it wasn’t as a teacher, because passion goes along way.  Most of time the cargiver left with a lot more experience, insight and gratitude after working with Esteban. 
4. How have you continued to incorporate time for YOU with 4 kiddos? 
I plan something I like once a month, for example, movies with a friend or a drink with girlfriends over dinner, or a date night with my biggest supporter- my husband, David.  
David and I both work on opposite weekends to help with off-setting the babysitting.  So, if David works, he’ll give me a break, and if I have work, I give him a break to go out with his friends, family or we hire a sitter.  
Since I telework once a week and I'm home 3 days, by the end of my weekend I'm ready to step out for an hour or two just to go to the grocery store and be alone, and David always helps with this (or vice versa). We are a great team and that helps in having a great, stable environment of any individual, even for myself.  
However, I waited so long to have my own kids, and I know first-hand that this is just a stage of my kids' lives and time flies by so quickly, so I try to enjoy every moment I can with them.  I truly believe in staying in the present moment, not looking too far ahead is the best thing any parent can do for themselves.  
Another great way to stay healthy is get active with your kids, stop being "checked out"!  It's a great way to stay healthy, and to lose the weight I give it my all in everything I do and push my limits when I feel tired.  I just see it as I'm not in shape, so that motivates me to be outdoors and either riding a bike or teaching the kids to roller blade.  Plus, it keeps me young and active.
The blessing of having had a child with special needs has left a gift to appreciate all the milestones my typically developing children reach, and to appreciate the moments I have with them, for it goes by so quickly.  I feel blessed to have had the opportunities I had with Esteban so I don’t take anything for granted. Life is too short, and I just wish my mother would've had the opportunity to go to his graduation and see him walk across that aisle for that big accomplishment we both looked forward to so much.  I know she is smiling looking at how well Esteban has done. 
5. Please share anything else you’d like us to know.
Definitely having a special needs group of friends whom can relate to my challenges was a Blessing.  I have some true Angels that navigated me through a lot of IEP, and through my frustrations with the school district and various meetings with regional centers, etc..  Having had a group of individuals that were professionals and my friends truly was invaluable. 
The reason I worked at the M.I.N.D. Institute was to gather help for others, and to also help myself in acquiring more information and skills to navigate myself as Esteban's vessel for his needs to be met.

My message is of both love and fear; love for both my sister and Esteban.  Knowing that Esteban lives in a realm of love.  When you choose love you loose any kind of fear or sadness.  
I want the audience for this interview to be anyone who wants to be filled with love, because truthfully, in giving you are receiving.  I’m Esteban Aunt, caregiver, Mother, but he’s been much more for me.  We knew Esteban needed help after both of his parents died, and my sweet husband David was my biggest supporter.  We both learned a lot in the process and have been blessed by having Esteban live with us.
We went through this experience raising a special needs child with no fear, just wanting to help our God son and loving him unconditionally, as my sister, Maria D. Tapia had done for many family members.  She, herself, was such a great example of love.

I loved my sister, and she gave me so much love that I wanted to give it to her son never knowing that I was being given a gift wrapped up in a beautiful sweet individual that I call my son Esteban.  My biological kids will also be blessed to have had a big brother/cousin in their life whom they love unconditionally and whose company they enjoy, and that is a huge help.
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