Blayre is my daughter. She is a person with special needs and developmental disabilities and she is my best friend. Blayre is the greatest gift I have ever received in life. She has taught me so many things about myself and about how to put someone else’s needs before my own. Before you can understand this in context, I will have to tell you the story of my best friend Blayre. This is the first of many future chapters in the journey of our special relationship.
Blayre is now 22. This is important to know because she is the size and stature of a 7 or 8 year old and has many of the needs of an infant. She is about 4 feet tall and weighs about 80 pounds. She can’t talk in words and she can’t walk on her own without assistance. She can’t feed herself with utensils. She basically has to be assisted with all activities. There are a lot of things Blayre can’t do.
What can Blayre do? She can look at you in a way that makes you feel that you are the only person in the world. She can hug you and make all your stress and problems go away in a moment. She can teach you how to love unconditionally. Blayre teaches you how to manage yourself so that you can interact with her and give her what she needs. Blayre teaches you how to listen with all your senses. Most importantly, Blayre teaches authenticity.
Blayre can’t fake it. If she is upset, you know it. If she doesn’t want to be touched, you know it. If she is ready to eat, you really know it! Imagine working for someone who only wants what they want and they have no capacity to accept no, not now, or wait. This is Blayre. You move at her pace not yours. Well, you can move at yours but you will have to hear the loudest most pitiful crying you have ever heard. You can get angry and frustrated. You can give up or you can learn to manage yourself and modify your process.
What is a typical day if the life with my Blayre. Generally speaking, Blayre is calm and content. However, she can be difficult to deal with when she is annoyed or things are not moving at her desired pace. You have to accept this because you can’t change it or control it. This means I have to expect annoyed and be surprised by contentment. In other words, I have no control but I have a lot of influence. My Influence comes from who I choose to be in our interactions. I choose to be positive and understanding. I talk to her constantly when she is yelling at me. My talking serves two purposes. I say things that reflect her emotion which centers me and it generally calms her down. I call this our relationship building time. I show understanding and she shows more patience.
I typically put Blayre to bed consistently at the same time. This does not mean that I can expect her to go to sleep or wake up consistently at the same time. Blayre wears Pull-Ups. I double them to cut down on accidents. Otherwise the day starts with changing sheets, washing laundry, and a bath at 3 or 4AM. Next, get up at 3 or 4AM to prevent special cause variation. In other words, I get up at 3 or 4AM to change Blayre and give her water.
Blayre’s morning routine. Prepare breakfast prior to getting Blayre up. Why? She expects everything to be prepared when she gets to the kitchen. Otherwise, that screeching sound I spoke of earlier occurs. Not the way you want to start your day. Then I get Blayre up on the potty, brush teeth, do hair, bathe if not the night before, dress, and off to the kitchen. We eat and then she gets ready to be picked up by her assistant for a day out 3 days a week. The other days she is at her moms.
The short story. I hate annoying sounds so I avoid them by having a predictable process that Blayre has learned to expect with me. I take responsibility for getting what I need to the best of my ability. I do this because it gives me positive energy which enables me to be more adaptable. This keeps me centered and calm and she feels like she comes first and is understood. Talking acknowledges the emotion and allows me to express what I think she is feeling constructively and take ownership of what I may not be doing. Remember, I am guessing because she can’t tell me.
I get to design my world to give me what I need which gives me more capacity to adapt to give others what they need from me. I have to make choices to create a situation where we both win. To do anything else results in my being annoyed, closed and focused on my needs more than hers. She can’t help it, I can. In other words, if I turn into my stressed out self, our experience together is negatively impacted. I can’t control Blayre but I can strive to understand what works with her and what does not. This is a life skill and I learned it at home and apply it universally.
Here are a few takeaways. If we don’t know who we are and what we need to be motivated, inspired, and centered it makes it nearly impossible for us to manage ourselves. If we can’t manage ourselves, we are minimally effective. When we are minimally effective, we get stressed and act out. Then, who we are being further diminishes our effectiveness and creates negative artifacts (experiences with others and a negative perception of who we are). People remember who we were being and how we impacted them. Eventually we have to go back and dig up the artifacts we created. Usually we spend a lot of time blaming others before we accept accountability. All of this takes time and energy. Time an energy we should be spending being effective instead of recovering from the damage done when we act out our stress behavior. Get the picture? Blayre