I have often found the special needs community to be an extended family. Whenever I meet another mom and advocate I feel a certain amount of glee. It can often feel overwhelming and lonely. Your friends mean well, but they place you on a pedestal, and pat you on the back. Many don’t understand your cries for help or support. The sometimes desperate need to vent or just refresh your spirit.
It can feel as if the entire world is on your shoulders. One bad day can undo months of progress. Any major transition with your team can lead to a whole new fight. Often you carry the weight of all your responsibilities as a mother, wife, and contributor to your family and community. Add the weight of your special needs child’s education, medical team, teachers… It adds up. Every person on your team recommends something new, wants you to buy this resource, complains that you haven’t gotten that one, until you feel behind and overwhelmed.
I have spoken about all of our issues before. But there seems to be more understanding in seeing our struggles in print. I tried doing a facebook series of posts to explain our daily struggles with services only to be met with constant attacks. Not only was I personally called names, my son’s intelligence was repeatedly attacked, and my role as a mother was questioned. Because we tried to show those closest to us what it was really like. I am constantly told to stay quiet.
I can no longer listen to those voices. This advocacy campaign has not only helped my son but other blind people. We have effected change and brought awareness to the rare. I am proud of this month and my honesty. I will not be silenced. If our story is too much for you, please feel free to stop reading. I will not be forced to be silent any longer. We have struggled, it is our story, and we have every right to tell it. I have saved lives in the telling.
Aprille is someone I have followed because of her honesty. She wrote a simple post about supporting the special needs mom. She was the first person to reach through and tell me it was okay to be overwhelmed. It was okay to feel like I wasn’t supermom. That my fears were real and not imagined. She lifted years of silence and pain off of my shoulders.
If you are a special needs parent or just want to support someone you know that is one, please visit Aprille’s blog. She has an amazing 31 Days of Supporting the Special Needs Family. It will transform how you feel about the special needs family.
When our sons were getting ready to turn three, I wrote a blog post called How to encourage a special-needs mom (when you aren’t one) in hopes of encouraging them and other moms like them. It was something that they could share with their friends and family about how they could be encouraged and supported. It was full of some things I had learned through the course of our four-year friendship. This post was such a blessing to them and other moms of special-needs children around the world that it ended up going viral earlier this year. This post has now been viewed over 204,000 times.