“Dear family and friends,
I know you love us, and you think you need to let your thoughts be known about how we handle our lives because somehow, you believe you are helping. I think there is something you should know.
When you single out my parenting, it makes me feel like less of a mother. It makes everything I do and fight for seem undervalued. It makes the places where I struggle and doubt myself the most fill with even more doubt and worry.
When you judge the accuracy of my child’s diagnosis, it hurts. You minimize the numerous doctor’s appointments, massive amounts of paperwork, and the struggles we went through as our concerns were ignored and our voices weren’t heard. You minimize the entire track of our diagnosis path, and you weren’t even a part of making sure my child received the proper diagnosis. You weren’t there; I was.
When you judge our screen time rules, know this is how my child regulates herself. She chooses when she needs it, and I allow her to do that. When you say we should just take away the iPad more, you aren’t there to see the fallout; I am.
When you judge my child because the therapies aren’t helping like you think they should or the therapies are helping so much that you don’t understand why we would continue, know you aren’t there. You aren’t watching the small victories. Those little victories where my heart leaps when she says, ‘swing’ or ‘the girl is swinging’ to answer the speech pathologist. Or counter to that, when she’s out of therapy and I see the skills she’s worked so hard to gain get lost. When they slowly change, slowly disappear as we fight for more help. The right help from the right therapists. You aren’t there; but I am.
When you walk into my house and see the disheveled mess my living room is because toys are scattered everywhere, or you see the sink full of dishes or the baskets full of laundry, you think I should do better. But you didn’t see us at two in the morning when I was up for the sixth night this week with my child because she doesn’t sleep at night. You weren’t there; but I was.
You aren’t there as I sleep next to her, inexplicably allowing my child to yet again sleep in my bed instead of hers. My husband and I living in two separate worlds. You weren’t there when we decided co-sleeping would be best for our family. But you think it’s important to remind us why we aren’t making a good decision. You aren’t there; but we are.
You aren’t there at that IEP meeting where I fight to ensure my child has everything she needs to be successful as well as be included with her peers as much as possible. You aren’t there; but I am.
You aren’t there as I do my best to respect my child’s rigid routine. Planning each and every outing outside of the house. Planning it from the minute we leave until the minute we return to ensure everyone is safe for something which for most families, would be a simple grocery trip. Full of anxiety for what could go wrong. You aren’t there knowing what could cause a meltdown, understanding exactly how things need to be done to prevent it. Knowing what to do and how to react when the meltdown happens. You aren’t there; but I am.
You aren’t there as I try to balance all the demands of motherhood with the added demands of raising a special needs child. You aren’t there while I walk through this, so often feeling alone in this journey. Doubting my ability to keep on going. Feeling judged by so many outside looking in. You aren’t there; but I am.
You aren’t there as I try to sort through what our next step is, plan ahead for what our next obstacle will be before it hits, or plan what her future will be. What her diagnosis means for her life and the future. The questions I ask myself in darkness that I wouldn’t dare say aloud. The tears fall as my fears and worries grow from the unknowns of the weeks and months to come. You aren’t there; I am.
So, to our family and friends, I want you to know we love you. We desire your support because life is hard enough. I hope you will always ask questions. I hope you are willing to listen to me and understand the things I have learned from this journey with my child. Maybe even ask if we are doing okay. Or better yet, ask if there is anything you can do to help.
Please remember you aren’t here walking in my shoes or taking on the responsibility of my life. Or what it means to care for my special needs child. I am. I’m the one who is there through it all. Remember this when you speak about me, our family, and our children. Remember you aren’t there with my family each day; I am.
This is for every special needs family out there walking through this world. I hope this helps others understand our path just a little bit more.
My autistic daughter is now twelve years old. My ultimate goal is to make sure nobody ever feels alone in this journey.”
This story was submitted to Love What Matters by Jeana Weise. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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