|In a zillion years, I never thought I'd mention RK in my blog|
And no, I am not doing some kooky Carnac thing.
This is something I have wanted to
So sorry for the rant, if you don't want to hear my kvetching, click on over to CNN.com, People.com or whatever else floats your boat.
Maya was diagnosed with autism 3 years ago. I cannot tell you how many times someone has said something to me along the lines of "Maya doesn't look autistic." or "I would never guess that Maya is autistic." It happens constantly. I think in some well-meaning-but-unknowing-about-autism-way these messages are supposed to be positive and supportive. I am guessing, since many of these type of remarks have been made by people, I love, respect, care about or have no reason to have a beef, I always take them in a complimentary fashion and retort with something like "yes, you cannot immediately tell she is autistic by looking at her (or even through casual contact) but indeed she fits the criteria for the diagnosis. The more polite (or less interested people depending on how you look at it) leave it at that. Those more interested sometimes probe further. And to be honest, most of the time I don't mind. I did not understand a lot about autism before Maya was diagnosed (and am no expert now) and would have said the exact same thing in the same situation.
Sometimes interest and concern can be overrated. But only sometimes. But honestly speaking, there are times I would like to channel my inner Ralph Kramden, thrash around my black and white living room and shout at the top of my lungs "to the moon Alice, right in the kisser!"
Just because a kid (or adult) does not have a permanent faraway look in their eyes, is not rocking back and forth constantly, doesn't talk, hates physical contact or isn't banging their head against a wall, doesn't mean that there isn't autism. These signs are signs, but they do not have to be present also. There are plenty of other kids on the autistic spectrum (like mine) who do not show these more 'obvious' signs of autism. Let's face it, many people's perception of autism (like mine pre-diagnosis) was based on the movie Rain Man so it seems pretty easy to understand why they look at Maya and ask that. Nonetheless, rocking back and forth and counting cards? Not necessary for autism.
Autism is a developmental disorder comprised of aggregate of symptoms which manifests itself in impaired social interaction and communication and is often accompanied by restricted or repetitive behavior. Impaired communication does not mean the same as "doesn't speak" and restricted or repetitive behavior does not have to mean head banging. It can show itself at different severities, combinations or intensities which is why autistic children can be difficult to treat, as there is no cure, but also no one method, therapy, or approach that universally works. Each child although autistic, exhibits their challenges in different ways and different appearances. Once in a public service message I saw a slogan (and I am paraphrasing). People with autism are like snowflakes, they resemble each other, but each one is entirely unique. I love that, because that is EXACTLY how it is. Impaired communication can mean, as in Maya's case, that she is verbal (extremely) but she can "produce" more language than she understands. I am often told by teachers that she speaks beautifully, long sentences (and she is bilingual to boot) but she understands much less. Those long sentences are often the product of what she hears. She mimics often what she hears (that's called echolalia, which is another common characteristic of autistic children). So when I tell her "say I love you daddy, she says, I love you daddy perfectly, in my exact pitch, tone and rhythm). She knows what I love you means, but she will also repeat things she hears on the radio, tv, news, etc. When you talk to her, and you have to know her to see this, you can see that sometimes she does not understand what you are asking of her or what you expect, this is often why it is difficult for her to listen and follow instructions). Repetitive behavior can be anything from doing something in a certain order the same every day, like coming in from school and immediately checking on your trains, to having to eat all the yellow m&ms first.
What can be upsetting for us parents (or at least me) is not that people don't understand autism or what it means, but that sometimes their well intentioned statements or questioning of Maya's autism can be hard to take at times. At some point, especially when I am exhausted or am feeling low people's persistence in insisting that she doesn't seem autistic and their next natural statement of "maybe she isn't" can often make me feel even more exasperated. Most of the time it is okay, I chalk it up to the to not being able to understand it unless it happens to you, but sometimes I really feel like we are being questioned. Like maybe she isn't autistic and we are missing something.
I am no doctor, nor am I any type of expert on autism. Do I know for 1000000000000% surety that she is autistic? Probably not. But what I do know is that she does fit enough of the characteristics to fit a diagnosis. What I also know is that she cannot do things like other kids. It doesn't matter the label. My child cannot do what other kids her age should be doing. She needs help. That is what I know, regardless of what we call it.
Yesterday I got an email from one of my very favorite people (KS) who told me that she wanted to understand more about Maya's development and asked me specifically what Maya can and cannot do. I could not get this email out of my mind. It was one of the most loving, caring interchanges I have had about Maya and her situation and I thought to myself that this was a way I could help people to understand more about Maya.
- Maya can dress herself (although on school days I still dress her as the time pressure is too much for her). Until 2 months ago she often forgot to put on underpants or put them on outside her pants.
- She cannot tie shoelaces. Only recently she stopped putting her shoes on the wrong foot as standard. She also cannot fasten a snap, zip a zipper or unbutton a button. (she has a pretty serious fine motor skills delay).
- She cannot follow a repetitive routine without guidance. She knows she has to wash face and hands, brush teeth, get dressed, brush hair. She needs an adult to tell her what to do when, otherwise everything would be dirty and unkempt.
- She does not know her address or her telephone number. She does not know how to dial or answer a telephone.
- I often wonder if she really knows her last name. She knows it but never will say it or use it.
- She knows our names and the town she lives, but in a situation like getting lost she would never, now be able to tell an adult our parents and how we can be found (we put our names and phone numbers in her coats or summer clothes just in case).
- She only just (within the last two weeks) voluntarily washes her hands before or after eating.
- She is only just starting to learn the days of the week, until now it was all color based for her (green day, blue day, red day)
- She doesn't know how to tell time. That's also still in colors for her.
- She does not know her left from right.
- She knows the letters of the alphabet but cannot sing the alphabet song. She is extremely shy in letting anyone see that she knows them. Often if I try to prompt her she will turn away or even get angry.
- She does not understand the 'wants' of others. She still largely sees the world like a toddler or preschooler. This makes it very hard for her to have friends her own age.
- Although she can focus on things for a long period of time, it is very difficult for her to sit for a specified period and do something from start to finish (unless on the rare occasion that she wants to), this makes it hard for her to succeed in a school curriculum or even to sit in a circle.
Maya is 7 years old.
I mention all these things not because I am focusing on what she cannot do (because she can do many, many things and she has come so so far), but only trying to explain her situation without labels in practical terms as that might help those that want to understand see what we are dealing with.
Maybe this helps. I really do appreciate all the support and interest about Maya. 99% of the time it really does comfort me greatly and help me cope with the hardships and the sometimes heartbreak that is there. One silver lining is that this has taught me to try and be more understanding of other parents and the issues they face, particularly when I don't know a lot about the situation. I want to be interested and ask questions but not push it to the point where someone might think I am questioning their judgement. Because when you are having a bad day, that sucks.
OK, rant over (and KS, you are wonderful!).