Becoming sheSTRENGTH: Part 1
Foreword: I had a conversation with a Special Needs advocate last week about some frustrations I’m having with various elements of Blake’s day to day life. She said all of the things I am concerned with are valid, but unfortunately are part of a broken system we have in place for families and for children with Special Needs.
We got off the phone and she text me back and said, “your best asset to help your son and others like him, is to ADVOCATE. ADVOCATE. ADVOCATE.” She said use your gifts to bring more awareness to daily life as a parent and business owner of a child with special needs. So this is where I begin…
We adopted our son with Down Syndrome, 11 1/2 years ago. At that point in time, everything changed for us and our future decisions, family life, and for me–my business model.
It was at this point I began to adopt the concept of running a business out of a gym, at my house. And from that point on, I began to evolve the concept of sheSTRENGTH into what it is today. This business model was a choice, and one I had to make work, if I wanted to be a career woman and a mom of a child with special needs.
Our adoption is still a large part of our daily decisions, it is behind every choice we make as a family and as I make in my business. As we’ve transitioned into teenager-life with Blake, our decisions have become more evolved and as a result changes have been made. Blake has developed a common trait for people with Down Syndrome, called eloping. He has always had this trait, but it has become more pronounced in the past year or two. He will randomly run away, follow someone away from us, take off, and mindlessly disappear in seconds. This has involved us and the local Sheriff and police department on multiple occasions. This has become an issue for him in school and when he’s with other family members.
This means public places are a HUGE stressor for our family, with him. It also means staying over night places is hard to do as he has been known to wander away in the night. And he is completely clueless to dangers so he doesn’t understand “it is bad” when we try to talk to him or educate him on the dangers of it–it is not received in a meaningful way.
- So this means one of us is always “on-call.” ALL the time. It means you worry when you send him to school or church hoping he isn’t lost or he wanders away unnoticed.
- It means you don’t sit down at ball tournaments, you always have one eye on the field/court and one on the area he is playing in at ALL times.
- It means you take him with you to the bathroom and every time —and you meet questioning eyes of other women and girls waiting in line wondering why he’s standing in a girls’ bathroom.
- It means you can’t let him run loose with his buddies without lecturing them not to let him leave their sight and to come get one of us immediately when done playing together.
- It means you dress him in bright clothing, and hope he doesn’t take them off.
- It means you are always holding your breath. Always scanning crowds, always searching.
- It means you always seem on edge and seem to have short patience, and never seem to “let loose.”
- It means you use air tags and tracking devices on him when he is playing outside your house, and you have to keep your phone near to constantly check his location status (while working)
- It means we stay home a lot more than we go out, it means we workout at home, work from home, too.
It is also taxing on his siblings as they don’t always understand why you can’t help coach more, why you can’t be at more practices, why you can’t stay overnight at hotels more, why they have to babysit him so much or why he can’t be left alone for even 10 minutes….
But these are the things, things we agreed to when we signed the papers to adopt him. And we never once have regretted that decision, BUT we also want people to understand and become more aware of the parts of our life that have forged the day to day life and business of sheSTRENGTH.