Wishing and hoping.
When I started writing this I was going to talk of all the things I dream about for my family, my daughter and myself. I realized that instead of wishing or hoping or praying I should be doing! That old Nike slogan is now my personal mantra, “Just DO it!”. Silly, I know but it works.
How many times have I put off doing exercises (what we call at-home therapy) because I don’t feel like doing it? How many times do I look the other way when my child is acting out because I don’t have the energy. How many times do I ignore the signs that are leading to a meltdown. I am almost embarrassed to say ”too many times”. Because of not doing, everything gets out of control which leads to me getting mad/sad, complaining to anyone who will listen, or breaking down myself. Instead of dealing with life I worry about the house that needs cleaning or emails that need to be sent. Because I was not interacting with Bean, she tackles her little brother or gets into the flour jar. More often, especially in large groups, I get so overwhelmed with her behavior that I check out rather doing something to help it.
Yes, I wish. I still wish every day, on every star, with every candle. I wish I didn’t have to worry about doing exercises with Bean up to three hours a day. I wish she would wear a winter coat so she doesn’t freeze outside. I wish she would eat anything I put in front of her or sleep through the night every night. I wish she would sit still at school during group time so she isn’t singled out. I wish there were three of me to give my daughter, other two children, husband, and myself what we all need. I wish everyone knew about SPD and I didn’t have to try to explain what it is or why Bean does what she does. I wish when I did explain, people didn’t look at me like I was making things up. I wish more than anything we didn’t have this in our lives.
And yes, I still hope. I hope and pray every day. I hope that she turns a miraculous corner and can self regulate like an old pro. I hope she can soon recognize her needs and take care of them on her own. I hope she doesn’t hurt herself while “seeking”. I hope this doesn’t taint her memories of childhood. I hope that this diagnosis will not cost her friends, cause her to get looked at funny, or set her apart in any way. I hope that the teachers at school will overlook her constant movement, her energy, and her need to touch everything and everyone. I hope that everyone sees her as the amazing person she is. I hope even I can look past all of this and truly KNOW that she doesn’t act out on purpose. She really doesn’t mean it. I hope that I can accept this diagnosis and move forward. I hope this helps me love her more. I hope this makes me more patient, more understanding, more sympathetic.
But, wishing and hoping will get me nowhere. I need to act, I need to just DO it! Instead of putting off the exercises I am going to start doing them when they need to be done. Putting them off just makes life harder for all of us. Maybe I’ll even look for ways to incorporate them into a game, or get friends to help with the fun. Enlisting siblings, aunts and uncles I’ve found works wonders. The Out-of-Sync Child Has Fun will no longer be my paperweight!
I’m starting a journal to document the good and difficult interactions to help me recognize trends. By writing things down I remember them better so this should help me see what triggers certain behaviors. I’m also using it as a way to keep track what types of therapy work or don’t work. At first I thought it would just take more time out of my day but I see now it could be a valuable tool.
My husband and I have committed to each other that we’ll start observing Bean more and if we see a need for some heavy work, deep pressure etc. we’ll drop everything to take care of her. We are going to get down on her level and interact with her. We will truly listen to her and enjoy our time with her. He’s even going to go to a few OT appointments to get some exercises of his own to do with her. We are going to work as a team instead of a this one woman show.
Finally, I am going to tell school about her SPD. Now, this is a biggie. I know they will not be understanding (the teacher and aid are older and not very accepting). I am afraid of what this will do. She is only in K3, which is a lot of interactive play, sitting, listening, and following direction. None of which come easy to her. Instead of hoping she has a good day, wishing she would sit still I am going to help her accomplish this. Here is the tough part…I have a hard time recognizing what she needs. How do I explain this to her teachers when I don’t understand? Well, I am going to “just do it”. I am going to do the research, read the books, talk with her Dr. and OT - oh and hope some of you give me suggestions!.
Writing this makes me teary. I wish I was a miracle worker. I hope I can be strong for Bean. I will probably still wish, hope, and pray. No matter what happens I will DO what I can to help my daughter.