We had a very successful trip to Bridget’s neurologist. And not just because we survived it without Bridget setting off any alarms.
I have to confess, out of all of Bridget’s doctors, her neurologist is my favorite. We’ve had her since she was a fellow (no, not a Jenner) and saw her through getting her MD. We’ve seen her choosing her specialty and having her first child.
But what I love most about this doctor is her honesty. She admits what she doesn’t know and validates what I need to know. More importantly, she teaches me.
I asked about Bridget’s recall. Bridget has made such tremendous gains in language. Her frustration level is below expectations, she is communicating with not just her family but with everyone. She rarely needs a translator. Yet if I ask her what happened at school today she tells me what she had for lunch.
Or she tells me that Lynn ate her cupcake.
She cannot tell me if she had gym, art or played with Jacob.
Her doctor explained to me this way:
Bridget’s language has exploded and it’s awesome. Yet answering a question is vastly different than spewing out whatever is on your mind (my words, not hers). When I am asking Bridget a question it’s like I’m speaking in a foreign language.
I ask: Bridget what did you do in school today?
Bridget heard: Bridget (xx) you (xx) (xx) school (xx)?
She knows I’m talking to her (Bridget) she knows I’m talking about school. She doesn’t know what I am asking.
For example, if I ask: “I’m going to the store do you want Cheerios,” and you only understood “store” and “Cheerios,” you don’t know if I actually said:
I bought Cheerios at the store
I need you to buy Cheerios at the store
I ate Cheerios at the store
I don’t have any money why didn’t you just buy the freaking Cheerios!
Bridget’s inability to answer my question is because I’m not asking the question in a way she can answer.
I worked for a doctor once who told a nurse: You have asked the same question 3 times and I’ve given the same answer 3 times. Obviously you are not asking the right question because my answer is always going to be the same.
In Bridget’s case it’s two-fold. I need to ask better questions, but I also need to model for her the way to answer me. I have to say, “Today, you had gym and jumped with Lynn. Did you jump with Lynn?”
When she answers, yes. I have to repeat to her: “Yes, I jumped with Lynn” (thank you to her SPT Lauren who filled me in on that added line). I have to begin not accepting that Lynn ate her cupcake, but correcting her that Lynn wanted to eat it (just kidding!).
It is difficult, really. Because I am so proud of Bridget’s language gains this year. I am honest enough to say that her gains are in the expressive (speaking to me) and not the receptive (answering me). I am grateful enough to conceded without her speech therapists, special education teacher and educational support personnel (who may or may not be eating her cupcakes) Bridget would be locked in a non-verbal world.
While she is still considered “non-verbal” she is making huge strides and thanks to her team will continue to break any barriers put upon her.
For any parent struggling out there with language, find a therapist and teacher and ESP and doctor who works with you and doesn’t dictate to you. And when you do, when you find a doctor that understands the parent is the most important therapist, doctor, advocate and innovator in your child’s life and gives you the tools to improve you don’t just keep her.
You thank her.
Thank you to Dr. April Levin at Boston Children’s Hospital for always believing in Bridget and for always giving me the tools to make her succeed.
Thank you to Lauren and Christine at Spaulding for Children who work with Bridget weekly to expand her abilities (and mine).
Thank you to Jen who created a classroom where Bridget not only flourishes but is challenged.
Thank you to Lynn who loves and nourishes Bridget. And may or may not eat her cupcakes.
When I began I thought it would center on Bridget, on living with a child who kept us, and the medical establishment, guessing. Like all things, the blog grew to include our family. Most of us are more than one thing. Today, my blog contains sisterly love, life, laughs and tears, and challenges from others sharing struggles. Undiagnosed but okay…started as a blog about raising a child with special needs. Like life, it evolved.
The most important thing my blog has taught me is having a village is what you need to get through life.
I hope you find your village here, I know I did.