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Medium-Term Goals

By on Jun 6, 2018 in Apraxia, Mama Musings, Microduplication 15q:11.2 | 2 comments

I met with a very cool speech therapist today who (among many other things, and in between me vomiting information at her as I am prone to do) asked me what our long-term goals are for Rory.  It kind of took me aback, because of course our long-term aspirational goals for Rory are for her to catch up to her peers with speech, mainstream in school and go on to live a perfectly normal life.  As I’ve been thinking about it though, I’ve come up with some more medium-term goals that I think are more attainable and I wanted to share them here:

1. I want Rory to become more of a “complete” person.  Right now she is very centered on what she wants or doesn’t want, and being happy or mad because she has or doesn’t have whatever the current desire is.  She doesn’t really care about anyone else but herself, which in some ways is typical for a young child, but in some ways is very atypical.  I would love for her to have more empathy and care about us more.

2. I want to be able to get to know Rory better.  I know she likes Minnie Mouse, the color pink, ballet and music, but I don’t get to have the adorable toddler conversations that I have had with my other children about all of the silly things they think about when they are little.  I want to be able to ask her opinion and get it.  To be able to ask about her day and hear all about it from her perspective instead of getting a quick blurb from her teacher or therapist.  Even if this is not through words, I want to know my daughter more.

3. I want to like Rory as much as I love her.  And I realize this one sounds harsh.  Don’t get me wrong, she is my child, and I LOVE her fiercely.  I will do anything in my power to help her.  But I very often, probably more often than not, don’t LIKE her very much.  I am frustrated with how difficult things are nearly all of the time.  I get soooooo frustrated a million times a day when she hurts Owen (again, and again, and again), or fights me getting dressed (for the tenth time that day) or screams hysterically (in the car, at the dinner table, when I brush her teeth, when everything isn’t exactly the way she wants it exactly when she wants it to be), and so on.  It is normal to be frustrated with our children, and I also get frustrated with my three boys, but it is a normal level of frustration.  I would love to get closer to that normal level of frustration with Rory so we can have a more peaceful household that is not completely centered around Rory’s wants and needs.  I want to be delighted by her more often than I am frustrated by her.

4. Longer term I want her to be able to communicate with other people.  Of course I would love for that to be with words, but if it’s not, I would like for her to be able to learn sign language, or use her AAC device, or something, so that she can still lead a relatively normal life.  I want her to be able to go to school. To learn how to read, write and do math (even if she is frustrated by it like I am instead of in love with it like Carter).  To have a career aspiration and work hard until she reaches it.  This one is pretty challenging, but I think it is definitely attainable.

5. But the big one, the scary one….I want her to be able to enjoy some of the magic of childhood and the wonders of life.  I want her to be able to get lost in a book and to cry because a movie is heartbreaking.  To be curious about things and ask why the sky is blue and how flowers bloom and how big the universe is.   Most of all, I want her to be able to fall in love and have a family.  To have true friendships.  To have her independence.  We acknowledge that this very big and very lofty goal might not be possible anymore, but we’re still not willing to give up on it altogether and probably won’t be for at least a few more years of trying everything possible to help her.  Because there ARE kids like Rory who go on to lead perfectly normal lives.  There are adults with her chromosome disorder who don’t even know they have it until their child is tested and they are, too.  Heck, I might even have her chromosome disorder with no effects whatsoever (we will see!).  I have to believe that it is possible for Rory to overcome the symptoms of her condition and have a normal life.  She deserves for us to not give up on her.

In the meantime, I hope that maybe those four medium-term goals might be more attainable, and I hope that as she starts ABA therapy and potentially starts spending some more time with this new speech therapist we met today that we are on the right track toward reaching them.  We have some other big things on the horizon too that I hope to share more about in the coming weeks (no, I’m not pregnant!).  Until then, send us some positive energy, especially next week, and wish us luck!