Special Needs Families Feature #1 with Roxanne Zsido & her family

August 22, 2020 1 Comment

Special Needs Families Feature #1 with Roxanne Zsido & her family

 

I am Roxanne Zsido, mother of 2. One being an autistic boy (18) named RJ. I currently reside on the suburbs of NJ with my 2 kids and husband of 22 years. I am the founder of the Zsido Ranch - www.ZsidoRanch.org – a therapeutic equine-centered community for adults with autism and aging. Additionally, therapeutic Horse-Riding Instructor and an Ambassador Advocate to members of Congress for Autism Speaks.

My son, RJ was born with a Congenital Heart Defect. From birth until now, he has had 3 open heart surgeries and 19 procedures.  He also has had lung failure, chronic GI issues and a compromised immune system. And he is non-verbal. He was diagnosed at 2 ½ years old with Autism. Any language he has had has faded away.

The behaviors that compelled me to seek support were his issues with not being able to fall asleep and maintain sleep. His anxiety, his sensory overloads. It was unbearable and he was hard to engage. I knew sending him to school like this would be difficult.  If a child cannot engage, how would they learn? I sought the help of a Neurologist in NYC who I found was the best method of help for us.

 I tried DAN doctors, Holistic and different therapies, but at the end of it, this neurologist who over sees our child made the real difference. Thereafter, I searched for one of the best schools in the tri-state that would meet my son’s needs and provide him the individualized attention he needed and the foundation he needed to bring out the best of him.

 It required me to learn the special education system and fight extremely hard in courts and as a pro se to win every year prospective funding for this school. I did it well!

What surprised me about parenting is that this diagnosis comes with an excessively big expense! A heavy strain on our marriage and continued personal sacrifices! However, sick or not sick, it is our responsibility as a parent to provide them with the best life we can and what is in the best interest for them! My experience in getting my son the resources he needs has and still is a journey of consistent persistence, money and advocating! It is not just enrolling and let be.

 Progress is contingent upon a parent’s involvement. I am and always will be a consistent part of his programs.

The different in being a parent to a neuro-typical child and one with autism is that sometimes the attention on the autism child is far more than the NT child.  My son requires around the clock supervision, so it often has made my daughter feel like she is not getting the same attention. I must keep reminding her how fortunate she is that she can, and he cannot, that she will, and he will but with supervision.

I have isolated time for us just to do our thing while daddy has his time with my son. It is short lived sometimes but the continuation to provide them both with as much love and attention they each need is endless.

I can define myself as a better human being since my son’s autism as I am more empowered to do more for this population not just him.  I am much more involved and compassionate to the special needs population and am working to change so much for them!

 I have done away for with my future and investing in their future in developing this one of a kind community for them. Regardless of the hustle and bustle, I know we owe it to him to do so!

Parenting life with autism is a permanent life changing one.  A life which chose us. A life which is heavy but I rather he be born to me than someone else that may have hurt him or placed him in an institution.

I cherish my son’s funny sense of humor. I cherish his ability to communicate through supportive typing and the conversations we have had. 

Our parenting triumphs are his ability to communicate through supportive typing. His ability to type what he likes, wants and when he is in pain.

The struggles are more with society right now! Covid-19!

What I have seen over the years is that Autism is only increasing in numbers! I see more parents having to face battles with districts to provide an appropriate placement, I see it consistently being a lot about the money!!! The more money you have the more options and advantages!  I see less and less transitional opportunities and placements for those that are medically fragile or more severe. I see parents at their breaking points and in despair.

I see difficulties for those aging. I see the pain and worry in parents every day and hear it. I see the focus on the younger ones and early intervention still and a smaller focus on the transitional!  I see aides being burnt out and so little pay to them! I see a turning staff where I do not want to see it! I see a lack of compassion still!

I see the more things change the more things stay the same!

I think it will be parents that will be the ones to create the jobs, homes and placements for their kids and only hope that they persevere to continue to help those to come!

 



1 Response

Niria
Niria

August 29, 2020

Great and inspiring story.

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