"No one believed he had as many challenges as were present. He was diagnosed in second grade with ADD and deemed lazy and defiant. In reality although He had A.D.D. he had many other issues as well. I went back to school and vowed that I would become an advocate for all special needs parents and never brush off their concerns as ours had been."
Tell us about your childhood?
I was born in Panama, South America. My father was a merchant marine officer. He and my mother moved to Panama when my brothers who were identical twins, were five months old. My father was the chief port engineer at the Panama Canal Zone. My brothers were five years older then me and I have a sister 10 years older.
My parents got divorced when I was three and I moved back to the States with my siblings and mother.. We lived in New Jersey for a year and then moved to Massachusetts. My mother wanted to move back by family.
I had a moderate speech impairment and went to speech therapy from age six to age twelve. I had a syndrome that in laymens terms was called a watery S. I was an avid reader and was reading Nancy Drew chapter Books at age six. I was an extremely extroverted Tomboy who emulated my brothers, yet I loved to hole my self up in my room for a couple of hours and read at the same time.
I loved sports and became a hurdler on the track team in high school. I have always had a strong level of empathy about me. I would help out all of the underdogs or anyone for that matter who needed my assistance. I recall a little boy who was extremely poor and had ten siblings. He sat in front of me in fourth grade. I would always ask him what he ate for breakfast because I was worried about his health.
My husband Bob and I celebrated our 28th anniversary together on October 19th. He is truly my other half, friend, and soul mate. Bob is a civil engineer. We have weathered many challenges together. On top of medical challenges with our eldest son and learning disabilities with our youngest, we have taken the word challenging to another realm.
My mother was diagnosed with terminal brain cancer in May of 2003. Two days after my mother's diagnosis, Bob's mother was diagnosed with terminal Leukaemia. He was travelling North to be with his mother at her home where she received hospice care while I travelled South to care for my mother in her home while she received hospice care.
In between all of this we managed jobs, and staggered our schedules so one of us would be present for our sons who were in high school at the time.
After my mother died I was diagnosed with type 2 diabetes. Three months after I was diagnosed with type 2 diabetes, my husband was diagnosed with it too. Looking challenges in the eye with humour as is my character, I told my husband this sharing poop had to end.
I truly believe that everyone is connected in the path we travel in life. I do not believe anything is by chance. By dealing with the same issues simultaneously my husband and I were able to support each other at a deep level because each of us understood what the other was going through. The same is true in dealing with our children's challenges, or any challenge for that matter. We were challenged but through those challenges we gained knowledge that could help us, others, and to become stronger more understanding people as a result of it all.
He went on to receive his Bachelors degree in music performance and education where he performed in the U College Band. He is determined, honest, and hard working and is now a paramedic. He also always had an incredible talent in the science field.
I am impressed by the fine young man he has grown up to be and could not be prouder of him.
I do not know where he got his incredible musical talent as I sound like a cow in heat when I sing.
I recall him hooking up our digital TV cable box for us when he was twelve years of age in fifteen minutes using no directions!! He has a grand sense of humour. It is a misnomer that Aspergians do not have a sense of humour. He has a rare ability to be able to take the challenging things in life and see a form of ironic humour in them. This is another quality that I love about my youngest.
|My big brother is so clever..|
As with his brother, his perseverance in life makes me so proud. Despite struggling with school having no IEP until 10th grade, being bullied, etc. He has continuously picked himself up when he fell and tried again, never giving up.
He has kept on the good side of the law, is hard working, maintaining a job while he is going to school and has a huge heart of gold.
I would not change my family for the world. They are my heroes. They have struggled and not only survived but succeeded.
I went back to school and received my bachelors degree in psychology and masters degree in Education. I had one goal, to educate myself so I could help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also wanted to work with educators and society at large to become educated on the autism spectrum as I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success. I wanted to use my experiences bringing up a child with Aspergers to ease the challenges of other parents. My son was not diagnosed until high school.
How would you define autism?
I have been pondering exactly what autism awareness means. As a neurotypical living within a family sprinkled with aspergians, I have learned most likely more from my family than them from me. Mostly, to step out of my own little box and attempt to perceive the world from the eyes of an individual other than myself.
The world renowned Temple Grandin: An author of many books that have expanded and awakened the world’s knowledge and acceptance of autism. She is also a food handling systems designer, and much much more. Miss Grandin has given the autism community a great deal of respect and reduced the stigma associated to the autism spectrum through her candour regarding her life and public presence as a professional.
Bill Gates Founder of Microsoft whose gift for technology brought us Microsoft. FYI without Mr. Gates wonderful development of Microsoft we would not be interacting with the world through in a literal millisecond via electronic communication.
Thomas Edison: He was the forefather of inventing the light-bulb, phonograph, and motion pictures.
Albert Einstein: His theory of relativity unlocked the mysteries of the
world and set forth a path of exploration for future scientists.
John Elder Robison: Author of many books such as “Look Me in the Eye” Through his brave willingness to publicly tell his story from childhood to adulthood, he became a role model for other individuals on the spectrum. He exemplifies the ideology that yes; aspergians strive for and do experience success within society.
Dan Aykroyd: He is brought a gift of humour and entertainment into
many lives at times when they did not think they could laugh.
Holly Peete, and Toni Braxton: Just to name a few stars who have become awesome advocates for the autism community as a result of having children on the spectrum. They are perhaps the most humble and grounded public personalities in the entertainment business. Hence my comment earlier that we can learn as much if not more from our children on the spectrum than they learn from us.
Last but not least, an individual with Aspergers that is my hero is my young adult, determined, creative, electronics whiz son. He will always be a celebrity in my eyes.
Final summing up as a parent?
Upon my presenting my case here, would the world be better if we could “cure” Aspergers. Nah, I think not. Perhaps our other option is to step out of our own personal soapbox, fraught with personal perceptions of how people should act and accept each other for the contributions that our differences bring into society. Aspergians must attempt to understand neurotypicals, but we neurotypicals must learn to embrace and accept the wonderful contributions of Aspergians as well.
To all individuals past and present with Aspergers and their wonderful parents who did or still do encourage and strive to understand their children, I salute you and tip my hat to you for the awesome individuals that you all are.
May we all grow to live in a utopian world of commonality born from respect and acceptance for each person’s individuality and an understanding of what would happen if society deleted the them and us ideology and replaced it with WE.
Before we finish would you like to tell us about your books?
This book is 32 pages long and was developed to be informative in a design that busy parents, educators, and society at large can read quickly. Some parents have told me that they love the compact size because they can carry this book in their purse, glove compartment and more and pull out the book to show people when attempting to explain their child's needs or behaviour to others. I know of an educator who keeps a copy in her desk draw and can pull the book out at a moments notice to access information regarding a particular child on the spectrum.
You have a new book coming out this weekend?
The complete works of my blog Taking the Diss out of Disabled has just been published Kindle/paperback and is available on Amazon.
Taking the "Diss" Out of Disabled was chosen as my book title to emphasize the need for tolerance, understanding, an inclusive reflective mindset and acceptance of individuals with disabilities by society at large.
Many people have expressed the fact that my articles have inspired them and they wished for a book of my works that they could read at anytime. It contains inspiring stories, poetry, musings, curriculum ideas, and tips about Aspergers, living, parenting, and teaching individuals on the spectrum.
Mari, thank you so much for sharing your journey, I'm sure it will inspire many people.