What we can learn from AnnMaria DeMars (aka: Ronda’s mom)
Original post first appeared 10/1/15
In all the hype and excitement our community gained from learning Ronda Rousey had CAS, one very important piece was left out. This piece, was her mother.
Ronda is a living, breathing, symbol of hope for our community. She speaks beautifully in interviews without any hint (except maybe to a trained ear) of apraxia at all. She has been in movies and on talk shows and we can all find hope that one day our child who struggles to speak can eventually gain the same fate. That success IS waiting for us at the end of the tunnel. It is important because it is empowering.
Unfortunately there is an ugly side I rarely talk about. I don’t talk about it, because I hate that it is actually a truth. The truth is, some children will not beat apraxia. It is a very sad reality. It is no joke to say apraxia is a beast. It is NOT your typical later talker or speech delay. It a hard-wired neurological problem that only has a chance of being remediated by intense and appropriate speech therapy, and this therapy needs to be EARLY when the brain has the most plasticity.
As much as I have been thrilled to see people find hope from Ronda, who they should also be looking at is her mom. Sacrifices were made. HUGE sacrifices. Ronda was growing up in California. Professionals told her mother she would eventually speak, but AnnMaria‘s mommy gut was on high alert. She just knew something was wrong. She knew it so deeply she rejected all the assurances and moved her family from California to North Dakota. She accepted a job at the University and as a deal, Ronda would receive intense and frequentspeech therapy.
When I read that, my ears perked up. I mean, think about that for a minute. You are living in your community. You are comfortable, this is where you want to stay, but something is wrong with your child. Ronda says in her book going from California to North Dakota is not a typical American migration pattern. I mean, really think about that! Despite professionals reassuring AnnMaria that Ronda would be fine, she took drastic measures and moved them to North Dakota. (For the record, she is now back living in California).
That is the story I want people to understand.
AnnMaria commented on my blog post that she often wonders what would have happened had she not done that. My response was that the heartbreaking truth is that we would not see the Ronda we see today. She may have still been the world’s best MMA fighter, but there is very little doubt in my mind we would all see the speech she has that we see today. That is the truth and reality of apraxia. If it were not, I would not have been utterly devastated at Ashlynn’s dx. If that were not the reality, I would not spend the hours I spend dedicated to apraxia awareness. I tell people all the time I’m an SLP specializing now in the disorder and my daughter still sees a private SLP along with her school SLP. This disorder is no joke.
I had my hair done this summer and the hairdresser was new. As we were getting to know each other, she asked me what I do. I told her I was an SLP specializing in a severe speech disorder called apraxia. She nonchalantly said her cousin had that. My eyebrows raised a little, but then she started describing her cousin’s speech was that of about a toddler. She said though her cousin is really smart, she speaks like a three year old. I asked how old she was and she replied, “sixteen.”
My stomach immediately turned into knots. Honestly, I could have cried. I HATE that that is the reality of apraxia. As I learned more, her parents had only ever had school therapy. School therapy is not bad, but let me remind you all that I am an SLP and my daughter still sees a private SLP!! I can‘t stress this enough. Apraxia may be a war you didn’t sign up for, but you have been drafted and now you need to fight. If you want to win, if you want your child to win, you need to come out with every gun blazing and with every soldier at your disposal.
That’s not the only sacrifice AnnMaria made though. Ronda has two older, very verbal, sisters. When she was in North Dakota, her dad pursued a job opportunity a couple hours away. The SLP advised that Ronda go with him. Being away from her sister’s would force Ronda to talk more. The verdict? Ronda went with her dad.
Again…….just imagine the sacrifice. Sending your baby away because in your heart you know it will help her speak.
In one interview I was watching, AnnMaria was talking about how Ronda would beg her not to do interviews. In fact, she said in early interviews Ronda’s sister would be hiding behind her chair to help her. How many of us want to save our children pain by sheltering them? It’s natural, but it’s not what needs to be done if you want your child to overcome apraxia. AnnMaria pushed Ronda to do those interviews. How many of us would do the same?
The message of this post is one I will not likely address for some time, again because I want my blog to be mostly about hope and not about dread. However, I want to make sure that just because we now know a person who grew up and overcame apraxia, we don’t become apathetic and reassured that our child will be the same some day. We can have hope, but it is necessary to also realize the decisions, sacrifices, and drastic measures that were made by her mother to ensure Ronda was the Ronda we all see today.
