Strengthen Parents of Special Needs Children
Day 1: People feel just like YOU – We have each other!
Parents of Special Needs Children are some of the strongest people that I know. We are a breed of people that are different from others. We are tired, exhausted and spent being pulled in many directions. There is enormous responsibility because no one is going to take this path with our child.
Disappointments began when we noticed that our child’s growth or development just wasn’t quite right and then more disappointments to follow when least expected.
We celebrate and appreciate moments that parents of typical children may never even notice. We grow in ways that we never imagined, developing abilities beyond our foresight. Being consumed taking care of others, we may not even know who we are anymore.
We may feel nervous asking ourselves are we doing too much, too little, the right thing, or are we focusing on the completely wrong thing? We try not to step on anyone’s toes as we advocate for our children. How do we network to figure out what is right for our child to reach their potential?
We juggle the impossible of raising our child/ren to their fullest potential, accessing resources for their development, their siblings, our spouse and finally ourselves.
I remember when my son was diagnosed with a disorder that would most likely cause significant development and medical issues for him. I was stunned, numb while activated to search everything to learn what I needed to do to help him. How was I stunned, numb and yet activated to a higher level than I have ever been?
During that time in our little family, our life revolved around his diagnosis. Time passed with his disorder became just a part or appendage of our family that was a part of us. Later we got in the rhythm of existing as a family but taking care of the specials needs when needed. Occasionally there would be unexpected hiccups that we hoped wouldn’t impact our son. Naturally we shifted our routine to mobilize but then those hiccups became routine.
Somewhere though I think on this path we tend to lose part of ourselves taking care of critical along with other needs of the family. Larger life ordinary events creep in, we lose a spouse, death of a parent, divorce, remarriage, step-children, more children, etc.. We once again shift our family unit and the needs of our unique family into these unexpected events.
Something happens to us as we drive and push the momentum of caring for so many others that we sometimes stop feeling or at times feel too much. We disappear, become invisible and our needs …. well our needs – we don’t even think about our needs anymore. That is when I have seen us lose something deep within us.
Then we become so strong and caring for a chronic disorder that people don’t come around to help anymore. We are long forgotten and even avoided. When someone asks us how we are doing or how our child or family is, they are being polite but don’t really want to know and truthfully couldn’t even imagine what our world is even like.
We need less strength at time and allow ourselves to soften to feel parts of the world that we don’t even notice passing by us. It is then that we begin to reach out and participate in them again.
I will be writing for the next 31 days in the month of October about strategies that can enable us to avoid chronic dullness or burnout as caregivers of long term disorders.
I’ve been a parent of a special needs child/ren since 1996 and I may have another 50 more years ahead of me. As parents of special needs children, we can relate to each other in ways that our own extended family members can’t possibly understand.
We are all in different stages of this journey. Let’s break those stages down and when a stage might return we can understand what we need. I want to help identify those stages, feelings to empower ourselves with strategies to get through those stages in the healthiest way possible.
I want to learn from all of you too, your comments and shared journey is important. I learn from my experiences and other caregivers I know with special needs children and what strengthens them.
I want you to know that I know you are out there and even though what I may speak of in a particular stage may not be you, I want to learn how you get through it. I have crossed paths with many exhausted caregivers that just didn’t know where their next drop of energy would come from. We spend a couple hours sharing and I think we both go our separate paths strengthened.
I will share the deepest part of my heart with you and I hope that you will feel comfortable sharing parts of yourself. I have been through a lot; have seen a lot and I am certain that you have too. Share your story… share your heart and what has helped you during different parts of your journey. We will all grow together… you can comment below or email me personally at email@example.com For this first post please know that there are many of us that feel different but similar things at different times and find comfort that we are not alone.
Let’s start this journey together and identify more strategies for our future. Let’s not just exist but live uniquely as we navigate the windy paths. Each day will have a message and then printables that you can print off and write down how your unique path has carved you and how you have carved out your own journey.
All the BEST!