As I sit back, relaxing for the first time today, contemplating the events of this past week one thing keeps coming to mind, God is in control. He’s in control of everything as much as I hate admitting it at times, a lot actually (I have control issues).  Giving up control is something I have a very hard time doing. I need to control my environment to keep my status quo, thank you SPD; when my environment gets out of control or I am unable to have control of it, I can feel myself on edge all the time. I can feel my temper flaring and everything is a major annoyance, not a good thing when you are a mom to two special needs kids.

Rough weeks happen in my family, a lot. Between my daughter’s needs and my own issues with EDS and POTS, we are forever going to appointments, which means bus rides. Bus rides cause us a ton of stress on a good and on a bad day it’s all I can do to not have a meltdown in public. Bus rides frequently mean large portions of my day are not in my control. They aren’t in my daughter’s control. They are in God’s though.  My daughter had a couple of very important appointments this week. One was to scan her bones to check for stress fractures in her left leg, that she’s been complaining about off and on since December. Another was with a developmental psychologist to further evaluate her developmental delays. Much like myself, when my daughter’s routine is changed, and things happen out of her control, her whole day is thrown for a major loop. Emotions run super high and the slightest annoyance will turn into endless meltdowns and tears, add in pain from her legs and a wipe out yesterday trying to get to the bus for physical therapy, today was bound to be super rough.

We learned a few things this week that are important to this whole theme. My daughter’s OT is amazing. We received additional ideas on how to help my daughter regulate her senses including a homemade sensory ball using balloons and flour (for those who aren’t allergic to latex and wheat) and using a hand held massager to give her the sensor input she needs to regulate herself. This one is one of the things that I’m most excited about. For the first time in her life, she was calm and relaxed, for a while that is. Another idea we received was to use a medic alert bracelet in case she wanders off or gets injured when we aren’t there. We needed to get her one anyway for her food allergies so we jumped all over ordering one last night and man is she excited about her yellow bracelet. The biggest lesson I learned as a special needs mom to special needs children, is that it’s okay to give up a little control. I can’t control my daughter’s reactions to sensory input, I can only help and guide her in controlling them herself.

Published in Ehlers-Danlos Syndrome (EDS), Illness / Disability, POTS