I’m excited to share Part 2 from Amy Fenton Lee’s blog series on “5 Things to Know about the Mother of a Child Diagnosed with Autism”. Again, this focuses on understanding the mother of a child with autism, but applies well to both parents. This is an excerpt from her well-researched and carefully prepared series. Please click here to read her entire post. I’m running this series each Monday this month, for Autism Awareness month. If you missed Part 1, you can find the link at the bottom of this post.
“Part 2: She may experience the conflicting emotions of grief and hope.
While grief is natural part of any special needs parent’s journey, it is experienced and processed differently for the family affected by autism. However, the range of possible outcomes varies even more dramatically for the autism diagnosis compared to other disorders and disabilities.
So, should a mother grieve the life she envisioned for her child? Or should she buckle herself in for a bumpy ride…remaining hopeful and doing everything humanly possible to help her child reach their full potential? Sadly, the pressure is great to keep silent and process her emotions alone. In fear of creating a self-fulfilling prophecy for her child’s future, a mother may remain tight lipped, avoiding conversations revealing her daily realities.
When engaging friends who parent a child with autism…Give them permission to both hurt and hope.”
A friend said to me recently, “I don’t know how you do it; you’re so strong with all of this.” I was impressed - my plan to appear strong and in control was working! I almost wanted to just thank my friend and walk away. But honesty is always better.
I took a moment, smiled, and responded that I have to be strong a lot of the time, but that’s not always how I feel. Temper tantrums, need for schedule & routine, drawings on the walls, and bad attitudes definitely take their toll. There are moments when I find myself thinking, “Life would be a lot easier without these added hassles.” I sometimes feel grief as I look down the road and wonder what our lives, and what our son’s life, might be like if things don’t change. 
But then there are moments of hope - almost tangible moments that I cling to ferociously! When it was time to write our son’s IEP, I went into the meeting feeling nervous and afraid. This was my first IEP meeting as a parent. I had attended others as a teacher. I had an advocate and another therapist on the call with me. I had friends and family praying for me. As I sat and listened to strangers planning my son’s therapy schedule, I found the nervousness being replaced by utter amazement: They were giving us MORE, in terms of therapy, than what they were legally bound to supply. We asked for a couple of extra things to be added, and they did. There was no fighting; there was no questioning of our abilities as parents. What we found was another group of supportive professionals who genuinely want our son to succeed! That gives us HOPE!
In our daily lives, we have the opportunity to dwell on a long list of things for which our son needs help. The list is overwhelming at times; the drives to therapy seem endless; the commitment seems exhausting. We have reason to “live in the valley” and feel grief and despair.
Or, we have an opportunity to cling to hope! We have an opportunity to present hope through times of challenge to those around us, while still living out a very real and at times, difficult, life. If we choose to focus on the grief, how does that help us? We end up sad, depressed, lonely. While the grief is real, and it’s valid to sit and work through it at times, we choose to cling to hope! We choose to believe that somewhere down the road, our son’s “normal” will look a lot like the “normal” of his peers. And how does that hope help us? It gives us strength to persevere through the day; it brings renewed energy and focus. Hope gives us the ability to keep moving forward!
{UPDATE, 2013}: Some of the big things that had caused us stress 2 years ago (first writing) are things we don’t have to deal with much anymore. However, as in a lot of aspects of life, when you outgrow one situation, you grow into a new one. With new situations come new issues to deal with. Thankfully we have a few more tools in our arsenal to help us deal with the new situations, but it’s still a long, sometimes difficult, growing process.
Love this quote: “Should she buckle herself in for a bumpy ride?” because there are many days I feel like I’m buckling in and tucking my head to push through whatever we’re facing that day.
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Rebekah Reply:
April 8th, 2013 at 9:34 am
How true! It’s life preservation mode some days - and other days there are no problems at all. I find it hard to switch between overwhelming struggles and overwhelming peace.
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Thank you for sharing your experience. We don’t have any special need children and I’m so often at a loss as to how I can help other moms. Its nice to hear your experience from a few years ago and the updates.
Becky Marie recently posted…How We Built Our Raised Garden Beds
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Rebekah Reply:
April 9th, 2013 at 8:26 am
Thanks so much for stopping by - even as a mom to a special needs child, I’m often at a loss as to how to have others help us. But I know we can’t do it all alone!
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