The Journey Begins

~ NickyB.

This is a continuation of how it all began for us (Part 2).
It has been ONE YEAR since I started this blog! I can’t believe how fast the time has gone! I wanted to re-post a few of my very first posts so people new to my blog could know how it all began. I want to thank everyone that reads and follows my blog. My hope is that my blog educates and inspires all! My prayer is for kids and adults with autism to be accepted and loved.

NickysdayWithAutism

The next few days were honestly a blur.  I remember crying off and on, feeling sorry for myself, and wondering WHY this happened to me, my son, and my family.  “God has to heal him from this”.  My husband was trying to process this whole thing as much as I was.  I remember telling my family and trying to stay as upbeat and positive as I possibly could. “OK, that’s it, enough crying”…I need to do what I can to help this little boy.  I became a “google junkie”.  Some of the information was great and some was scary.  I chose to focus on the positive articles that I could find.  I went to the bookstore and purchased Jenny McCarthy’s book (Louder Than Words).  It was so refreshing to read a book from someone who was experiencing what I was experiencing.  In the last chapter of the book she…

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14 thoughts on “The Journey Begins”

  5. Your blog post touched my heart. I have to admit it took my a while to gain courage to read because it dredged up memories of the hell my parents went through especially my mother. Stephen was born in 1961 and when he was two in 1963 he did not speak so my parents brought him to various doctors. He was diagnosed as being emotionally disturbed. Now how a 2 year old can be emotionally disturbed is beyond me. Nobody knew what Autism was back in the 1960s. The doctors told my parents that he would never progress and to put him away in an institution. Keep in mind that there were no programs or services for developmentally disabled children in those days. They were labeled retarded and warehoused wallowing in their own feces and urine. Look up Staten Island’s Willowbrook State School! My parents refused to put him away and proceeded to educate him the best way they could while still looking for a school that would accept him. After several years of searching Stephen went to the Life Skills School.

    I can relate to the emotion suffering that the mother goes through because also back in the 60s if a child was born disabled it was the mother’s fault. Some of my Mom’s in-laws accused my Mom of doing something during her pregnancy to make Stephen “that way.” To this day a certain branch of my paternal cousins still says this even though my mother has been deceased for 18 years. Finally in 2012 I cut that branch off and have not spoken to them nor do I intend to do so. I knew my mother well and though it may sound strange I know her better since her death. My spirit and her spirit at times are one so I hear her wailing, see her tears, feel her guilt & shame though she did the best she knew how for her son. Before she passed away my Mommy told me that many times she was overwhelmed. Now I know exactly what she means because I’m at that juncture.

    Since I’ve had to take up the banner I know the struggle for while there is plenty of support for parents there is none for siblings. Pretty much I’ve been flying solo for years. Siblings as caregivers are forgotten. Kinda just like people over 50 especially women are forgotten and ignored. However one good thing that I worked for was the passage of the Paid Family Leave Law in New York. It was signed April 1st and will go into effect Jan. 2018. Too late to benefit Stephen and I because I plan to retire in 2018 but I’m glad my Autism Activism and Advocacy will benefit future generations. My prayer is that your children will not go through what Stephen and I have been through. God Bless.

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    1. Wow! You all have been through so much. It’s wonderful that your mom had the sense enough to educate him herself and not put him away. I can only imagine what you’ve been through as his sibling. I pray God continues to give you the strength. XOXO

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