A Mother's Journey
By Jhanin Olavarria| Published on April 1, 2021 | 15 Minute Read
To have a child with special needs is pretty much opening up a door, not knowing what's on the other side of the door waiting for you.
It is as the subconscious mind where we, as humans, encompass the awareness of all things the conscious mind cannot recognize.
In time we learn to process these things, some of us move forward, and some get stuck in refusing to accept and move forward. We carry a heavy load and responsibility for our loved ones with developmental disabilities.
As a parent, I can say it’s been an experience one can not fathom who is still learning every day.
When my son was diagnosed at the age of 2 with autism, many versions of the unexpectedness arose from Autism itself and the introduction to the developmental disability world and what it entailed.
No parent is prepared for this regardless of the disability. I had to train the mind in the beginning stages to instill that everyone is made different, not less but different.
A mini-explosion that vibrated through the tranquility of my mind that was no longer my haven. I always was in thought, processing everything that I have witnessed and experienced and yet continue till this day.
I had discovered the times we were living in were society many things are concerning for the developmental disabilities community.
It ranges from behavior to traits from emotions that bring confusion, anxiety, and anger, and having to understand and having compassion in the mix of it all.
Unfortunately, we are still in the mix of segregation to discrimination and, in some situations, abuse. It is the reality of our world regardless if we want to hear it or not.
Along with that dreadful fear that every parent encounters the uncertainty of their child's future, especially when we as the parents are no longer in this world.
I believe and know there is still hope to make a difference in the developmental disabilities community. Some are dedicated and believe in making change. Those are the ones you gravitate towards.
It’s been a lot to process. Unfortunately, we are not allowed to take breaks. It does not exist in our world.
I speak for myself, there may be some parents who may have the same outlook, and some may not. But we all must certainly work effortlessly on all levels. As parents, we can not run from what is inevitable; one must be prepared for the unprepared circumstances that will come regardless.
My goal in life is to give my son & others hope a chance and, most importantly, opportunities. If there aren't opportunities presented, make them, fight for them, advocate and strive for them. Take this moment as if it was the last breath that you as a parent were exhaling onto your child on all levels.
I have decided to choose my path and make the best of what is presented while also opening up more doors to build new ones for the future.
There will be many stages for the rookie parents who stumble onto this unknown world. I don't want to sugar coat it; I am as real and as transparent as possible from the experience that I have gone through to shed the reality on what it entails so a parent can be open-minded.
The education world will give parents one hell of a ride, so be prepared it will be from the beginning levels of early intervention or to the committee on preschool education and lastly, the committee on special education.
It starts with the doctors' meetings to then therapists and then the teachers who specialize in special education. Understanding the language of ABA “Applied Behavior Analysis” and also the strategizing of the IDT meetings “Interdisciplinary Team Meetings,” they are called that for it is the collaboration with your child's teacher, therapist before the official one. Then there is the official one which at the beginning for me was nerve-wracking, the infamous IEP ..which stands for “Individual Education Program.”
After a while, you will get cross-eyed from processing and absorbing so much. I know I did; I felt as if I was learning a new language at rapid speed in the beginning, it was hard to keep up.
But as I grew into it slowly, learning and understanding it, I started to learn the language more fluently to the point where I could have memorized it in my sleep.
Your comfort zone will no longer be your comfort zone. In a blink of an eye, it will do a 360, like taking a pop quiz from one of your teachers who decided to give you in class just to see how much you have learned and processed over the past few weeks.
My advice on education is to educate yourself so you can advocate for your child. Know your state board of education and also your district.
Join, register for anything on children advocacy education rights. I can not stress this strongly, for knowledge is power.
Regarding resources, there are many programs, not every program will be suitable for your loved one so make sure you do your homework well. Some claim to be absolute when it can be downright awful. We have had our fair shares in that area.
I would strongly suggest you check your state developmental disability council along with what upcoming events or meetings you can attend. Also, join any meeting that the school may offer just to get a feel of it.
Attend lectures, seminars, and fairs to see what type of programs or organizations are being offered for individuals with developmental disabilities so you're able to see and decided what would be a suitable fit for your loved one.
Most importantly, check your state Office of developmental disability "OPWDD" for every state operates differently. Here in NY where I am located, we have a very good resource on education and on programs and organization that offer a variety to the developmental disability community.
Especially on the office of developmental disability "OPWDD.," but as I have stated, every state is different, so again, do your homework.
Like everything else you will come upon slackers and ones who think they know best regarding your loved one education, services for them on various things. Here is a tip to you remember this well, you make the final call. If something does not sit well with you, then change it.
Nothing personal but in the end, it is in the best interest of what is best for your loved one.
A friend of mines Lauralynn came to my job one day and said a verse to me it was a bible verse Mathew 10:16.
Behold, I send you out as sheep in the midst of wolves. Therefore be wise as serpents and harmless as doves.”
It had me thinking and honestly, Our loved ones are the sheep who are in the midst of wolves and as parents, we must be wise as serpents and harmless as doves.
Now I am far from preaching any bible verses or preaching religion but she had me thinking and it hit me hard.
As to medical, it can vary depending on the individual's diagnose.
As you can see I don't mention one particular disability I mention all as a whole as the developmental disability community.
In the end, there are all individuals conflicted with a different disability.
In the medical field make sure in doing your research well in choosing the right doctor, develop a good relationship with your medical providers and team to build a history for your loved one for down the future because you will need it.
People & Acceptance :
Now this one is my all-time favorite any parent that crosses the path of having a loved one with any developmental disability is a harsh acceptance for us.
We are taught to perceive what society has claimed to be normal, suitable, and acceptable.
In our world, we get the comments, the judgments, the stares. The uneducated oxymorons as one person so nicely described to me one time.
They don't get it, and never will they don't know our struggles, our fears our hopes for the future.
The advice that I can give on this area is that as a parent I had to make the hardest realization in my life with my son Kalel, which was to accept what was.
I can either fall into a deep commiseration or do the complete opposite and prevail on this journey and help him get as far as he can, where he can live his life to the best of his ability.
As a parent, family member, caregiver, friend, you too will have to make that decision and come to final terms.
Regarding the oxymorons, we will encounter down our paths here's to hope they can be educated in life to not be so ignorant and helpful to the community of special needs.
The developmental disability community is different not less they know more than you can imagine they just learn and process things differently.
Absorb knowledge in all directions whether it be from books, articles, support groups, meeting up with other people who have had prior experience. speak to doctors, therapists teachers.
Crave knowledge so you can better understand your loved one and the developmental disability world. Invest yourself in all sorts of ways from advocating, educating so you can be prepared for the unexpectedness of their future.
I know I did and still have more to go.
Your loved ones need you in ways you can’t imagine for in the end their future lies in your hands and that is the truth.
If you seek, open your eyes, heart, and mind, embrace and accept and take the first step to help them go forward.
A thank you to Embracing Special Needs for sharing my story.
Founder to Harbor Green Enterprise and Blogger to Kalel Journey
About the Author:
Jhanin Olavarria is a native New Yorker from Manhattan, She had moved to Long Island in March of 2014. Her youngest son Kalel was diagnosed in the year 2009 with autism when he was two years old.
She knew little to nothing about the disorder nor was she prepared for what was in store for her, her family, or Kalel. She knew she had to find out all she could about the diagnose of autism. She was determined to make his life better and at the same time trying to figure out how to best plan for his future.
She is a dedicated mother that makes it her mission to be actively involved in many ways.
She had attended Long Island Advocacy classes to strategize and effectively advocate.
She is a 2015 Partners & Policymaking graduate in advocating knowledgeably and effectively for a public figure for Partners & Policymaking effective in influencing policy development at all levels.
She had volunteered at Life Worcs in March of 2015, working with children on the Autism Spectrum.
In May of 2017, she officially became certified to be an OPWDD broker for New York State long Island and assist families on the Island.
In March of 2019, she has begun to blog on her son’s Journey so people can get an overall reality view on the special needs world let alone autism.
In September 2019, she started attending Molloy college in Nonprofit Management.
In November 2020 She became the founder of Harbor Green Enterprise an organization that will be assisting the developmental disability community on many levels.
She is the voice of her son and for the special needs community at the end, she wants to make a change to give them all everlasting opportunities for their future!