More than words

You know when you think something is working and by all appearances it is, then you let someone else test your “thing” and it malfunctions? You have to go back to the drawing board and you are frustrated because you were so sure that your “thing” was working perfectly.

That my friends is life with Bridget.  

From experience I know that I should never become complacent in any aspect of Bridget’s life. For example, her language explosion over the past year or so has been incredible. When she says “I hate my new bed” it is with perfect articulation.  When she says she had “5 devil dogs at grandmas” you hear her and believe her. Then you take her to an appointment with a doctor who has never met her and they look to you to interpret. You look at them and think to yourself, it’s not like she is talking in a foreign language!

But she is.

Recenlty I realized that there are times I am the only one who understands what she is saying. I noticed at a birthday party that her closest (typical) friends talk for Bridget once it is clear that the parent did not understand what Bridget was trying to say.

This winter we had academic testing done on Bridget. When the doctor was going over the results she hit on something I hadn’t realized. Bridget cannot converse. If you ask Bridget what she did in school today, she will reply “pizza”. If you ask Bridget what she is doing, “red”.  I know that at 9-years old she is not typical and therefore her trajectory of language will be different. However, as the doctor kindly explained, a 3-year old can tell you about going to the store with their grandmother.  In most ways Bridget gets her point across. For example, my mother took Bridget to the carousel one afternoon. The following weekend she said to me: “Call grandmie. Carousel?”  Of course I called. Of course my mom took her to the carousel.

This leads to the quandary.  Is it that Bridget cannot speak/converse or are we not encouraging her to expand her language skills. The doctor (again kindly) that it was both.  That we needed to do more intensive speech therapy. Every day, Bridget needs to have speech therapy.  That the therapy has to include more articulation (something we have been working on) but also in the manner of a give-and-take conversation. Bridget has to be taught to converse, just like she had to be taught how to say every word she has spoken.

I hear Bridget speak, I think YAY My girl has words! Then the other shoe drops.  Like other parts of Bridget’s life the ability for her to speak is just the beginning. She needs more than words.  For a 9-year old who has been in speech therapy since she was 3 years old, I have to keep reminding myself that she has made progress.

Just not as much as I hoped.

It’s easy to get frustrated. It so easy to get into the mindset that this is just too hard. Why are we working so hard, spending 2-3 afternoons a week in speech therapy (six plus years) and she is still considered (by some) to be non-verbal. That after all this time, Bridget cannot make a call for help. If she is lost she probably will not be able to summon help or explain what she needs (LoJack was just renewed). Bridget cannot order for herself in a restaurant. She cannot advocate for herself. She cannot tell me what friend she played with at recess.

Technically, she has less verbal skills than a 3-year old.

I want more for her than that. There are many times I want to tell her to stop talking. I don’t know how many more times I can answer the same question over and over again.  That I want her to tell me about her day, not just repeat rainbow donut. Though a rainbow donut would be delicious, I highly doubt they served it in the school cafeteria. When a doctor asks Bridget a question, I need her to answer. I need her to verbalize what is going on in her complicated little body.

I need to know that if I am not there to be her interpreter, Bridget will be okay.

Guess what is going to be the first topic of conversation at our next IEP meeting?

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