Alchemy

I was at a mommy group today. During our group, the question "What has been one of the greatest dissapointments of your life?" was asked to all of the mommies at my table. Immediately, I thought of an audition that did not get me the part, one that I really wanted... Slowly it dawned on me, as the other mommies were chatting, that autism is no longer categorized as a dissapointment to me. Not that I don't have days when I really, really wish things were different, but God has so turned the situation around for me that I no longer see it as a negative. When I see my Scarlet engaging with life in her uninhibited, happy way (granted she did take a man out in Goodwill this week-He had a really great tummy, she couldn't help herself, but forgetting that one) I see such a gift. When I reflect on all the ways God has shown up in our situation, I feel so loved. When I think of all the ways Scarlet has taught me about what really matters, I feel so grateful. When I think of all the ways I have learned to trust... well, autism takes on a decidedly priveledged dress. I have prayed that God would take this ugliness that was thrown into our lives and turn it into something beautiful. I realized today, that he has answered this prayer. Only God could work this kind of alchemy.

"All things work together for good for those who love him and are called according to his purpose" Romans 8:28

It takes a village!

I started out my parenting journey, pretty confident that I could do a decent job of it.... That was before reality hit and I realized it is much harder than it looks and nothing is as black and white as it seemed to be when I was on the outside looking in. When a special needs child comes into the picture, all the knowledge you had banked on as a parent, knowledge that helped with your typically developing child, all that knowledge becomes a foreign language that no longer translates to your particular situation. There are still so many things that I have no idea how to remedy. Take Scarlet's hitting for instance. Scarlet hits a lot, for many different reasons. Often it is just a sensory need to feel her body in space and know where she ends and another person begins. Sometimes it is because she is excited and doesn't know what to do with her body. Sometimes it is to get someones attention because she doesn't have the words to call them. Sometimes it is because you are her little sister and she really likes hearing you scream. How do I punish her for trying to find out where her body is, or trying to communicate with someone she likes? It is a fine line between hitting her sister for enjoyment and trying to show her how excited she is to see her. How do I explain to Scarlet's brother and sister that her hitting isn't all malicious? How do you explain to a two year old that her sister is just loving her when she hits her.... boy that sets her up for some dysfunctional relationships!!! Theses kinds of issues still elude my parenting prowess and I just hope every day that I am not setting someone up for a lifetime of therapy.

I say hitting is just one of the issues because there are many. Toileting is another issue that takes on a life of its own with a special needs child. I went all out with Scarlet about a year ago in this area. No pull-ups, taking her to the bathroom every 15 minutes, then every 30 minutes, then every 45 and so on until she was doing fairly well. When she started school, however, all skills were lost and we regressed back to pull-ups. It was extremely taxing to maintain her toileting regimen. I felt as if I was holding onto the last vestige of my spider-web thin sanity for weeks as we went to the bathroom (all four of us when we were out of the house) every 30 minutes... then dealt with the accidents when and where they occurred. I have felt awful for letting her toileting slide, but I felt it was either my sanity or toileting success, and I must confess self-preservation won out on that one. Now, as I consider restarting the toileting regimen, I am plagued by ghosts of smelly, messy, stressful memories. But, toileting success is a very important part of being independent and I know Scarlet feels badly about her lack of success. It is at this point in my journey that I am so glad for the support that I have around me. I am finally feeling like I have access to the kinds of supports I had wanted from the very beginning of the autism diagnosis. I find that as I lift my wilting head back into the toileting fray, I am supported by an army of professionals who are making toileting success a, well, success!
Scarlet's therapists have always been great about toileting, but this year her EA is on board and doing amazing with her at school. Today she had a dry pull-up all afternoon at school. This is such a huge success and one that Scarlet is keenly aware of having accomplished. I feel like it may actually be possible to take on the toileting battle again. As I get older and wiser I find that certain sayings become more meaningful. It takes a village to raise a child is quickly becoming one of them.