My precious daughter is beautiful, intelligent and very high functioning. She doesn't look or seem autistic at first.
However, I am in the position to watch her daily struggles. Often, exasperated teachers reprimand her, once again, for not letting other children have a turn to answer the questions. Some locations overwhelm her with too much input. Noise increases her agitation. She knows that she doesn't quite fit in with other little girls, but doesn't understand why. She sees life as black and white; there are no shades of grey in her world view. Children tease her because she talks a bit differently.
In search of a diagnosis, we've seen medical specialists in specialties that I didn't even know existed. I've cut tags off clothing and taken my daughter on a search for sheets that were soft enough for her. I've learned about spinning (no, it doesn't involve fibers) and how to make a people taco, about proprioceptive input and cross body movements, and about weighted blankets and clothes that give hugs. I've read multiple books on social interactions and found Ipod apps to help her learn to interpret facial expressions.
I have spent many hours physically restraining her to prevent her from hurting herself or others as she screamed and flailed with frustration after a morning of "holding it all together" in public. Over the last several years, we have worked with her, helping her to recognize when she is loosing control. Now instead of having screaming, flailing tantrums when overwhelmed, she comes to me and asks for help. Usually, she can hold it back until she is with me, but the longer she holds it together, the more intense and the breakdown is and the longer it takes for her to become calm. Sunday afternoons are becoming a bit stressful right now. Unfortunately, she will accept no one but me to help her, and she is unable to do much self soothing yet. It's exhausting to be someone's constant and sole source of support.
However, this is progress. She is learning to recognize when she needs help. She is willing to accept it. And she is allowing one person into her personal world. Additionally, we've learned that a dark, quiet room and deep physical input seems to help her regulate. We've created a space of her own, for her to use as a retreat. She is experimenting with different activities to find some that can help her calm down.
She is working hard at learning subtle social rules, even though she really doesn't understand them. We are working on reading people's faces and body language. And, I am working on pushing her more to do what she is capable of doing. Her conversational skills are improving. A week ago, she even set up a play date with another girl from church. I was so proud!
Despite the progress that we have made, I continue to feel that maybe I'm not doing enough or that if I did something different or better, she wouldn't struggle so much. Like Temple's mother, I sometimes feel very alone. People who barely know her announce that the doctors & therapists are wrong, that there's no way that she has autism. It's difficult to work as hard as I do with her to have people tell me I just need to work harder, or that I need to cut the apron strings, or that putting her in public school will solve all her problems.
On the other hand, I compare myself with other parents who have children with much more severe needs than my little girl has, and I think that what we are dealing with doesn't deserve the help we get. Yes, I actually do think that sometimes. I am my harshest critic.
However, in quiet times of reflection, I know that she is doing as well as she is, that most people don't realize that she has autism, because of my concerted, daily effort in her behalf. I have to trust my heart and follow the Spirit's guidance. When I really listen, I know that we are mostly on the right track.
We are blessed that she is now able to, mostly, keep it together in public. We are blessed that we have had access to a wide range of services. We are blessed that I have the education I need to navigate the system and advocate for her. We are blessed to have caring therapists. But, most of all, we are blessed to have our wonderful daughter.