Wednesday, June 15, 2011

One at a time

"One at a time, one at a time." Last week when Maya was sick with impetigo and the back of her knees were covered with sores, that is what I told her each time she had to bend her knees to get up and down the stairs.

Now we are just back from Maya's educational evaluation meeting or for my American readers IEP.  This is basically a meeting with the school where you discuss and agree upon educational objectives for your child for the next school semester.  For Maya, who entered this school in March, this was her first such meeting as the first two and a half months were an observation period where they were getting to know Maya, assessing her and evaluating her.

Nothing in the report was a surprise and confirmed what we already knew.  She is doing well at school, this new environment has been good for her.  She is making good progress in lots of areas.  We talked a lot about reading today.  Maya is extremely shy about reading at home and although I know she is starting to read, she will not show that to us at home.  Even if I ask her to read with me, she will run away, hide her face and do something else.  At school her teacher, Cecile says that she sees this as well, but that she is doing really well with her reading at school.  At Maya's school they use a visual type learning method where small pictures are put on top of nouns and pronouns to help the child at first recognize the pictures and eventually the words.  And of course, like Dick, Jane and Sally (the characters in the stories I learned to read on) there is lots of repetition.  But Cecile really put our minds at ease.  They said she is really doing great.  In the 2.5 months since Maya has been in school she went from not being able to read at all, to being able to read these little exercises, the goal for the next semester is to get her sounding out words and reading.  She is doing well with numbers as well and starting simple addition and subtraction and is really enthusiastic about it.  Her social skills are getting better as well and even though there are still clear times where Maya chooses to be by herself, her social interaction with other kids is getting better.  Goals for next year in this area are to help her to increase her awareness about what others want and to help her to think about how she can solve small problems instead of running for help all the time.  Her fine motor skills remain a point of concern and writing is still extremely difficult for her.  She is making some progress in her physical therapy but it is difficult to really see progress there.  Maya holds a pencil correctly now most of the time, but her grip is not strong enough to really make lines and circular motions in a firm way on a page.  The school physical therapist is looking into maybe some other options for her and will come back to us on that.  Maya is also doing well in gym class and seems to have an affinity for athletics (whose child is she?) and we will enroll her in an extra curricular athletics program for special needs kids in the next school year.  They have just this week given Maya another seat in class, her own desk as when she sits with the rest of her class to do her work she is way too distracted and they end up just correcting her and telling her to sit down all the time.  At her own desk, a short distance away, she sits at her desk and her concentration is much better.

During the meeting I was again thinking about how far she has come and how different these meetings are then at her last school.  They are so much more focused on what she can do rather than on what she can't and just the road she has traveled the last two years has been amazing. She plays well with other children.  That was so not the situation a year or two ago.

Still, not everything came up roses unfortunately.  Cecile told us that she will be leaving the school at the end of this school year which is of course a big bummer for us.  They will bring in a new teacher who will be new to the school.  I am sad that Cecile is going because I really think she understands Maya and us very well but I must say I have been impressed with everyone at this school so I have confidence that the new teacher will be good too.  And I am just not going to create problems before they exist.

Also, after we went over the IEP we started talking more about Maya's future possibilities.  Cecile was positive and said that Maya has a lot of possibilities.  She said of course it is tough to predict but that when Maya goes to high school we can think about what she is interested in and look at possibilities.  She mentioned that perhaps for instance if Maya likes gardening or animals she might work in that area, or if she likes working in a store she might do something like that.  My heart sank hearing this.  The reality check.  Too much reality.  Cecile was really great about it and said she knows how hard that is for us to hear and she cannot predict that Maya maybe won't be able to do more than that but her view right now is that Maya will be able to work and earn a living for herself but that she will likely need to work in an area where there is a lot of supervision and where there is not a lot of pressure.  She also said that things like dealing with bills, insurance, running a household could perhaps be too much for her as an adult and that she might need assistance in that.  It's just so hard to hear this about your child.  It's so hard also because it is so difficult to put our finger on what Maya's real potential is.  We feel she is progressing, understanding things better and making progress.  She does not appear to be a child who is defined by her problems, but maybe she is more than we know?

So, we left the meeting, got in the car, I cried for the entire 20 minutes in the car on the way to Leo's parents to pick up Maya.  Not wanting Maya to see me crying, I wiped my tears, got out of the car and put one foot in front of the other, walked in and was almost knocked over by this little 7 year old who threw her arms around me and said, "I missed you so much mommy."

Me too baby, me too.

No one can say for certain what the future will bring for Maya.  Maybe it will bring more or maybe it will bring less.  The less scares the pants off of me but it is a possibility.  I really do appreciate Cecile's candor, she is the first person we have dealt with who has shared this openly with us.  Everyone else who has been involved in Maya's traject has been non-committal about the future.  It is true, no one knows what the future will bring for certain.  I think as a mother I have a choice to succumb to the heartbreak of it all or just to keep putting one foot in front of the other, to try and help support Maya, build her confidence, nurture her, mother her, comfort her, encourage her.  During this entire journey with autism I have said all along that I want to be able to help Maya to be able to achieve as much as she can, no matter how much or little that is.  I think I just have to keep telling myself that.  Succumbing to the heartbreak isn't going to help her.  

One at a time, one at a time.  Whether walking stairs or dealing with autism, it rings true.

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