When I thought of special needs kids, I used to think of kids who have ADHD, Autism, Down syndrome or anyone with a medical condition. I never thought my son falls into this category.
Yes, he was evaluated at 23 months that he has sensory processing disorder but even so, nothing has prepared me for the next 10 years.
He had severe sensory seeking behavior, oblivious to risk and danger, super sensitive to noises, get distracted constantly, can’t focus on task and can’t be anywhere else without me. And school is super tough for him.
Immediately after the evaluation he started receiving services: special itinerary teacher, occupational therapy and speech therapy. But honestly I don’t think the services had much impact on helping him catching up on development milestones. The occupational therapy did help explain and integrate some of the symptoms but it was discontinued when he entered kindergarten. Like many school districts, our district felt that there was not enough evidence that his issues will negatively impact learning. School districts are only concerned about physical limitations such as poor pencil grip to warrant occupational therapy. Subtle issues such as visual processing and audio processing are often ignored but have big impact on a child’s learning ability and social skills.
Over the years, the school has tried behavior management with incentives but nothing seems to help him focus on task or take multi step directions. Although he continues to progress, he lags behind his peers on social development and age appropriate classroom skills. Everyday is a struggle.
Not sure if it’s luck or not that he remains in the mainstream classroom, the demands and challenges moving up the grades are unyielding. Even with a full time teacher aide with him, most of the time he is clueless of what’s going on.
As I never thought of him as special needs, I didn’t seek for additional help for myself or for my family. I kept coping by juggling between work, home and caring for my son as much as I could. It put a toll on me and the family.
The demands from a professional job in a management role at a big corporation and providing constant care to my son were tremendous. During the process, I inadvertently somewhat neglected my daughter and husband as almost all of my time was dedicated to work and my son.
In my desperate quest for help and “cure” for my son, I searched for all sorts of evaluation and therapy for him. I took him to different therapies.
Along the way we found out through constant researching and evaluation that he has visual and audio processing issues. The new found diagnosis helped explain why he had so much problems in everyday life and in the classroom. Following instructions from the classroom board to his desk, tracking teacher’s instruction materials as well as taking verbal instructions are all difficult for him because either he is slow in processing or does not have the ability to process adequately visual and audio information. The therapies helped some but he is still a difficult case – nothing seems to nail it.
Then I turned to other areas that I can get help for him. He has exceptional art and music talents but is so difficult to coax him to take instructions. I thought success in learning and expressing himself in music may translate to other areas in life in addition to improving eye hand coordination.
That didn’t work out either. It is so difficult for him to take lessons. Either he got emotional when the teacher is firm with him or he just does his own stuff if the teacher is not firm enough.
I have also thought maybe he is “twice exceptional” – someone who has learning disorders and is also very talented (in music and art). After researching on this area, I realize most institutions that cater to twice exceptional gears towards academic and not artistic talent and these institutions also charge very expensive tuition. Hence, I still haven’t found a compatible place for his issues and talents.
Each day continues to be a struggle with homework, getting instructions in class and getting organized. I kept searching and found an organization that evaluate left right brain development and I finally found an explanation to most of the symptoms he has.
So while I struggle all these years trying to provide support to my son, it never occurs to me that he is special needs. I think partly because he’s always in the mainstream classroom and partly because no one gives me a solid single diagnosis and partly because I never thought of him as special needs even though I struggle everyday to provide support for him while holding a full time job and caring for the rest of my family.
What Hurts Me
Even though he has an IEP since age 2, the fact that I don’t think of him as special needs hurts me.
I missed the legal protection under FMLA which could protect my job while being away to care for my special needs son. Instead I struggled on my own to find a solution that works for me. I requested scaled back hours so that I could tend to my son but I got laid off without a severance package after 6 months on the new schedule.
My five years of services and merits to the company were ignored. I was told that the moment I requested scaled back hours I essentially stepped down from my management role and was no longer an employee even though I was on payroll and worked in management capacity for a while. I was very upset. I did some soul searching. I never told anyone that I have a special needs son because I didn’t think of him as being one.
Looking back if I accept that my son is special needs maybe my experience will be less stressful because I would seek and accept help. I would have exercise my right under FMLA and be protected by the law and took time off to take care of my son during those trying times.
My point is that the term special needs is pretty broad. Even as a mom you may not know you are actually a special needs working mom. And you need a lot of understanding, help and support and you are protected under the law to take time off to care for your special needs child.
I hope my story raise your awareness about what special needs encompass. It can include symptoms or behavior that no single term or name can describe. The fact that a child is not developing typically whether physically, mentally or emotionally may constitute special needs. As a special needs working mom, you should know your rights and exercise it when you need it.
I recommend reading The Out Of Sync Child if you are interested in learning about sensory processing disorder and The Disconnected Kid if you want to know how left right brain development discrepancy contributes to various development disorders.