Each school year I am faced with starting over with a new set of teachers. The convincing and assuring that, yes indeed my girl does have a disability. Yes she looks “fine”, yes she is a funny and engaging girl. To give staff a perspective, I usually email her team this page….a worthy repeat.
My Ten things
Inspired by a piece written by Ellen Notbohm, Ten Things Every Child With Autism Wishes You Knew, I have decided to also share the Ten things that THIS Mom wants you to know about our very own autism journey:
1) She is perfect and whole just the way she is. My hope is that she not only believes this for herself, but that the world will be a better place for knowing her and that she can finally feel that she isn’t needing to fit into our world, but the world is fitting into each others.
2.) When people say, “she is fine” they need to know how hard she is working to be “fine”. She is holding it together to not look like a complete fool at school by asking an obvious question, she is worrying that nobody will sit with her at lunch, she is wondering what is next, when will she be done and if she will have to talk to someone.
3.) When she wants to wear the same clothes over and over it is not because I am lazy and I don’t care about what she looks like–she has sensory issues and rigidity about new clothes and prefers the familiar clothes. I choose my battles and that is just not one of them. This includes a coat-she does not have a sense of hot or cold, therefore she does not feel the frigid temperatures and sees no reason to wear a coat. She carries it.
4.) Yes, she is “social”. On her terms. She says hi to all her favorite adults in the school building. She will NOT, however, ask her brothers a question or for help. At family functions she sits alone in another room because she doesn’t know how to be social and it is just too hard.
5.) She wants friends. As the years have gone on and the complexities of friendships increase in the teen years, she has had more difficulty with this. She would still love to have a friend over to play, but it must be controlled and structured just as you might a young child. Frustration and misunderstandings occur quickly.
6.) She sees no reason for social ‘niceties’. I understand that her future jobs and relationships will require a bit more politeness. For now, I am grateful for the initiation. She isn’t being rude, its her learning style. We will get there.
7.) She learns by experience. She needs specific language and expectations. When you____, then you _____. Once she experiences something new, and has success, she will be more likely to attempt it again. Success– that means just because she has been there, seen it or tried it does not count as she knows it.
8.) Although she doesn’t show affection in the way this world has decided is appropriate, she does care about people. She is interested in people. She is compassionate.
9.) Being with adults is easier. Adults can play the social game. Adults will let her talk about her favorite things or the topics she knows about. Kids walk away or ignore her. Adults can help her by prompting her to ask questions about themselves, or simply say “that is cool, but lets talk about _______”. Kids can help her by being a little nicer.
10.) I never hope to change or ‘recover’ my girl, she is exactly who she is meant to be. There are absolutely things that I wish were easier for her, but that does not mean that I wish she were ‘typical’. Her presence will forever change the lives of everyone in our family; my boys will be better men for knowing her and I will continue to learn and grow by being her Mom. I wouldn’t trade that for anything.