Wow! I watched an episode of Oprah today about a child that has Schizophrenia and her family. Watching this family and all they have to do just to keep their daughter safe from her self- injurious behavior as well as their infant son made me feel so sad for them. I know our experience with Alex is/was not nearly what they are going through but I felt I related to them on a few levels.
When Alex was first diagnosed, I felt a sense of relief. They said they felt the same when their daughter was diagnosed. For us it led to action. We fought hard and found the therapies/schools that worked best for him and our family. I am so grateful that now I feel that we have come through our rough times. They talked about peoples judgements and feeling alone. All of these things I feel or have felt or go back and forth with often. I pray that they will find the right resources to help their child and their family.
Something I have been wrestling with lately is my feeling of loneliness with my kids being in school. It finally hit me one day that the reason I feel this sense of loss or maybe just plain boredom each day while they are at school is because those years after Alex was first diagnosed were not your "normal" raising children as a stay-at-home mom years. I was constantly managing his routines, therapies, payment of therapies, worries of the expense of therapies, taking him to therapies, taking care of Simone...there wasn't a lot of down time. I feel like I had just accepted my role and that mom will most likely never have her "old life" back as a working woman outside of the home...I was a paralegal in my previous life...surrounded by prominent people in society, and what goes without saying....adults. Anyway, I feel that I had recently wrapped my head around this concept of my new life...I guess you could say "I accepted it" when now it seems that the kids, and unbelievably Alex, are doing great with school. Yes they still need me but not as much as before. Maybe I can have a life outside of being mom to these kids.
So, now I search for what that life will look like. Can I find a part-time job that will allow me to work with other adults, stimulate my brain, allow me to make some financial contribution to our family, be close by in case I am needed at the kids' school, etc...??? I am now on a mission to find just that. I hope it is out there. If I find this special place of employment, I know that they will be a true blessing to me.
On a sad note....I remember in my early research on Autism that back when they were initially "labeling" Autism...it was thought that it was childhood Schizophrenia!!! That was hard to read. I had an aunt who suffered from Schizophrenia and sadly, due to my ignorance and mostly following the adults that I knew that didn't model good behavior towards her, I know I didn't treat her kindly. We have come a long way in understanding all of these mental/neurological disorders and they all have things in common and affect families in common ways. I recently saw a new statistic that Autism now affects 1 in every 91 children...WOW! We still have more work to do in understanding the cause and there is never enough compassion for these families.