Day by Day


It is 10:34 pm and Jais and Charlise are FINALLY both sleeping peacefully in their new shared room. I have moved them into the same room for several reasons. One, I want Jais to have constant company. With constant company, it is my hope that he will withdrawal less, and self stimulate less (self stimulating behaviors or “stimming” are the behaviors typical of autistic children. Jais’s are: spinning in circles with his eyes staring out of their corners, rolling his car back and fourth and staring at the wheels, or just staring into space). Two, perhaps they will begin to talk to each other, or begin to talk period. And also because Charlise was having trouble transitioning to her crib. I thought she might find it comforting to be in the same room with her brother. My next project is to turn Charlise’s old nursery into a play/therapy room. I will be working on that this week.
The days pass quickly, and I am still panicked. There is this constant overwhelming feeling of anxiety. I am anxious to “cure” my son, even though my logic and the rest of the world has informed me that there is no such cure for autism. I am anxious about Charlise’s development. She, like Jais, has always fallen behind where “the books” and doctors say she should be. I worry that she too will develop autism. I watch her so closely for signs and symptoms. Most of all though I am anxious about being a good mom. I worry that I worry too much. I worry that I am not spending time with one or both of the children. Do I focus on Jais, to help him come out of his autism and leave Charlise to her self, or do I focus on Charlise, in order to keep her from developing autistic symptoms, and leave Jais to himself? It’s a tough choice to make, and I find myself attempting a balance between the two all day long. And I try to maintain this balance all while trying to do everything else that life as a mother and military wife entails. There are the dishes and laundry and sweeping and diapers of course. Then there’s the mowing of the lawn, the raking of leaves, the paying of bills, all of the things that usually fall onto my husband’s shoulders. And there’s him, of course, the missing him, the worrying about him, the attempt to keep up the home for him. All of this, and all I really want to do is take a nice hot shower, put on some cute clothes and enjoy a “normal” day with my children, and my husband, without the worry of autism, or deployment, or war, or the messy house. Will I ever get this normal day? I don’t know. And then I worry that I worry too much, and may be missing out on what life is right now. “Life is what happens while you’re busy making other plans.” Jais is a beautiful bright happy boy. He has a great personality. He enjoys life, these are all traits that are lacking in a lot of autistic children and children with other disabilities. I am grateful and blessed that he has these wonderful traits! Both of my children are very loving and adoring and forgiving. They both love me more than anybody else has ever loved me, and unconditionally! What a blessing it is to have such love surrounding me! So, amidst all of this heartache and worry, I do try to “stop and smell the roses”. I do try to enjoy them for who they are, right now, developmentally delayed, in the low percentiles, but so beautiful, so loving, so happy!
Jais is still not talking, to my heart’s dismay. But, he does communicate with me in his own way. When he wants to swing, he goes to the swing, smiles really big, and shakes the swing with both hands. If I swing him and prompt him to sign the word “more” he will do it. If he wants a snack, he will grab it from the pantry and come to me, without eye contact though, to let me know he wants some. I use these opportunities to try and teach him words like “more” or “please” or “open” or “bite”. None of these have caught on however.
Charlise has begun to pull to standing on her own. Today she attempted cruising, but stopped herself. She is my more careful child. She claps when prompted, points sometimes, tries to imitate words I say, and makes tons of eye contact. She always wants to be with mommy, which is very adorable, but hard when I need to mop or do dishes.
I meet with the director of Mariposa School for Children (a school for children with Autism) on Friday. I hope that this school is the answer I’ve been praying for. I hope for so much for Jais, for a normal life at least and at best for everything he ever wants. He does seem happy though. He doesn’t seem miserable except when we cannot communicate, so it is my first goal to bridge our communication.
I love them so much. Their daddy loves them so much. Together I know we can do this, with our strong marriage and our eternal and endless love for our babies, we will conquer this . . .
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