A little over five years ago, when Katie was first officially diagnosed with autism, I felt as if my world was falling apart. I gradually progressed into a stage of grieving - grieving the loss of a "normal" childhood for her, knowing that she will most likely never graduate from college, never get married, never have children of her own.
I then moved into a stage of action. I almost went off the deep end trying to get Katie every service, every therapy, every potential help that was out there for her. Once her services were well on their way to being established, reality started to set in. The reality of who Katie is and all the things she was capable of....pushing out the screens from the windows and "escaping" the house, climbing things, eating things that aren't meant to be eaten, the list goes on and on. Reality is a long stage - as least it was for me. I think reality was age 3-5 for me. The reality that spoken word will never be Katie's primary or preferred method of communication. The reality that she might never be completely toilet trained (although she totally proved me wrong on that one and is doing a fabulous job!) The reality that God chose Katie for us to raise. He gave her to us. He entrusted us with this precious life. A unique life, unlike many, but one that has since become the norm for us. I have often told people that I am thankful that God chose me to be Katie's parent. Not because I'm a great parent, because that is not what we are called to be, but rather because I love Katie, and I try to teach her that Jesus loves her, and I am grateful that she is in our home where she is treated with love, respect and equality to the fullest that we are able to give her. It took a long time for me to be able to say those things. It was definitely after I had passed through the "reality" stage....it was more like what I call the "routine" stage.
Although nothing in our life is really routine (except for Katie's schedule) I believe that I (and we as a family) are now in the routine stage with Katie. This is where, even though things are never easy - and if you are my friend on facebook, you will already know that things lately have been anything but easy. Katie has been extremely emotional, tantruming all the time, appearing to be completely out of sync, which leaves me standing there, looking at her, and wondering - "how can I help you? Why can't you tell me what is wrong? -- I feel horrible for her that in many ways she is "trapped" - unable to tell anyone what she is feeling, if she is hurt, if she needs help. That is the routine stage - learning to know how she communicates - and being able to meet her needs even though she can't verbal tell you what she needs. I write all this really only for my own reflection - to look back and say - look how far we have come...how much progress we have made, how much progress Katie has made.
It has been a very tough week so far - probably the roughest we have had in quite some time - and maybe that is what is causing me to be reflective - to say out loud that I wouldn't want my life to be any other way - that having Katie in my life makes me a better mother, a better wife, a better friend - and most of all has taught me a lot about God's love and acceptance - and how His hand truly does guide all things. Thank you Lord for our precious Katie. Help me to remember what a blessing she is, especially during the trying and difficult times.