Susan's Blog

Sunday, May 13, 2012

Autism Mommy Swami #2: How will I tell her?

Dear Autism Mommy Swami,

I have a question I was wondering if you could help me with. How long do I let my daughter live in her own world that involves driving, babysitting, getting married, having children, etc.? She is 11 years old, moderately cognitively impaired, high functioning autism, severe auditory processing disorder and understands about only 50% of very short familiar sentences. She has severe short term memory loss, seizures and a number of other medical issues. Language is lost on her. She tries, bless her heart, but she doesn’t understand what she is hearing most of the time or even what she is saying. She mimicks what she hears other peopele say. In this case, she hears her older sister talking about all these dreams, so of course these must be her dreams too. I hope that one day she will be able to be somewhat independant like your Nat, but I really wonder if that will ever happen because she cannot take care of even the basics without reminding or/and help. I worry constantly of her being taken advantage of in so many ways. I have only had her for nearly 3 years as I adopted her and her sister from foster care. She is beginning to come to a knowledge of some sort that she is different from other kids. But I am wondering how long to let her have these dreams that are not possible. She will never drive, or babysit, or have children…at least not unless she is taken advantage of or has sex and that is the outcome, but she will never be able to care for a child. She will always be a child herself mentally. When do I ease her into these truths or do I allow her to live in her dreams and face these things headlong as they come? I hate it when she says something about a variety of things I know she will never be capable of doing because it feels like I am lying to her to go along with whatever her chatter is in that area. It is weird because she has such a hard time communicating her needs and wants, but she can mimick these things so well and believes them. Does that make sense? Just wondering if you have any insight. Thanks in advance. –Gabriella


Dear Gabriella-

I can see how painful this is for you. I understand your questions. I also relate to how scared you are for her, and how black & white you are seeing things. So let me start there. She’s only 11. You would not believe how difficult things were with Nat at 11! So much growth occurred in his later teens and early 20’s! Although I don’t know your daughter, I do know that our delayed kids can and do continue growing after puberty (growing intellectually and socially, that is). It might be because they have experienced more of the world, and they understand it better, and so they are more in command of themselves and their communication. So you should try not to think in terms of “she will never…” because you don’t know. For instance, even if she will “never” babysit, it may be possible for her to go with some peer and help babysit. It might be possible for her to just be in the room with you and a relative’s baby, and let her do a few helpful things that you can call “babysitting.” It is not a lie; it is a creative form of getting her what she needs. As far as driving — well, that in itself is not such a big deal. Plenty of people don’t or can’t drive. That is something she can deal with when she’s older; you don’t have to address it now. Let her talk, let her fantasize, like any other 11 year old. Some of them think they’ll be ballerinas (I did, but I was a plump kid, so that was never to be!)!!! And this applies to having children… remember, a lot of little girls have their dreams, and who knows what true adulthood will bring? Keep in mind she’s just a little girl. She has limitations but she does not need to know about them in this way. If you were asking me how to tell her she can’t cross the street by herself, I would say tell her now! Help her now! But something like daydreams — let that be for now. Let her enjoy her thoughts, her confidence in herself. Her confidence and joy in life will probably actually help her succeed more later on. Attitude helps a lot. My mom thought I was crazy to want to be a writer… it only encouraged me more! Our kids always surprise us, please believe me. Finally, I want to address her mimicking ability: also a good thing, a skill! That may help her someday in articulation, in being understood, and in turn understanding people!

Also, I still have to repeat that you never know how she will grow. Even if she needs assistance in dressing or something, that doesn’t mean she won’t be independent in other ways. Do you think that Nat is really so independent? It’s all in the way I look at him. I feel proud over every small accomplishment, like when he can make himself understood at Starbucks… but that doesn’t mean he is independent in a restaurant! But we have to be happy wherever we can be.

Also, don’t feel that she will “always be a child mentally.” She will be a teen and then a grown woman and you don’t know how she will be perceiving the world. Our kids may seem childlike but they are very much whole people. Nat seems “babyish” at times but he is a man, and he needs me to remember that and respect it. Don’t worry. All this will come to you in time. For now, try to enjoy her fantasy world, like any other little girl, help her achieve the things she can, be creative! There are no rules here, no definites. Just trying our best day by day.

%d bloggers like this: