SLP Mommy of Apraxia

Category: Apraxia

The Hollywood Speech Convention: aka: ASHA conference

I remember being an undergrad, and the professors were encouraging us to attend the ASHA convention. ASHA stands for the American Speech/Language Hearing Association, and the convention is huge as it covers the scope of our entire field from babies to the geriatric population. ASHA has never been in Denver, so when you add up the price to fly, stay, and then pay for the conference, you start thinking your money might be better spent elsewhere.

This year though, it came to Denver, and the district I work for paid our way! That’s significant because the conference costs over $400.00 to attend!

It was fun seeing my cousin who is also an SLP, and seeing colleagues I worked with in my previous district! I went to lunch with my mentor and Ashlynn’s SLP, and oh yeah, I also learned a lot in the sessions I attended! Cody always tells me he thinks I want to go to these things just so I can “play with my friends.” I tell him that’s not true, that I really do learn a lot (and I do!), but I have to admit a big part is that it is fun to go and see all my SLP friends and to be able to nerd out and talk speech stuff all day.

I still have two more days, but I think I already experienced the cherry on top. I was invited to the CASANA reception after today’s conference. I was so nervous, but thankfully since I went to bootcamp I at least know three experts and of course Sharon Gretz, the executive director of CASANA. Dave Hammer immediately said hello and I at least found a place to stand. Part of me felt bad because I’m sure he would have preferred to talk to other experts, but he was so nice and started to introduce me to people he knew. It reminded me of two years ago when he offered at bootcamp to drive me somewhere and I remember putting on facebook that I had to pinch myself because I was in David Hammer’s van! lol Now though, I can say I know him, and that in and of itself is still crazy.

Anyway, I know some people aren’t good with names, but I am really good with names actually, and as he started talking I was blown away. There’s Greg Lof (research papers with his name on them and a talk I attended of his a few years ago in Denver, pop in my head), Joe Duffy (my graduate school motor speech disorders text book with Joe Duffy as the author pops in my head), oh and that is Dee Fish (the book this is how your treat Childhood Apraxia of Speech with Margaret Fish as the author pops in my head), and over there is Jonathon Preston ( a research article using ultrasound feedback headed by him pops in my head).

What the?? Where am I?? Why am I here??

As I smiled politely and said hello, a woman walked up to the table I was standing at. As I looked over, “Megan Overby??” popped out of my mouth. Another name on published research. “Yes? And you are?”

I am….picking my jaw off the ground…oh, I’m just Laura Smith. I’m an SLP here in Denver.

After I talked to her I turned around and bumped into a name tag that said Edwin. I looked up and realized it was Edwin Maas…..another huge name in the research. It was seriously like I was Alice in Wonderland and I was transported into a world where all the authors of my text books and research articles came to real life…only, this was real life…I think.

“Hello!!” I heard a loud but kind voice greeting people next to me. I turn my head and it’s none other than Nancy Kaufman. Yeah, that Nancy. If you have Kaufman cards or anything speech related with Kaufman on them, she’s the face behind the materials.

The rest of the evening continued on much in this fashion. I was able to hug Kathy Jekeilski, another expert and bootcamp mentor; and hang out with two of my fellow bootcampers Lucia and Marlo, who were in the same boat as me and who helped me feel so much more comfortable.

As it was time to leave, I went to tell Sharon goodbye and Sharon introduced to me to none other than Edythe Strand. I decided to take a picture of all the experts standing in that immediate area. This is only a fraction of who were there, but it is a great picture and a night I’ll never forget.

November 12, 2015
Insurance, no insurance, money, lack of money, and other rants

I was filling out Ashlynn’s Small Steps in Speech Grant Application tonight sparing myself plenty of time since it is due tomorrow! It’s always surreal to play the part of parent like this: stressing out, frantically collecting documents, invoices, cost verifications, reports, insurance denials and more only to turn around and provide therapy for parents who are doing the same thing.

It’s always an awkward position to be a sounding board for parents stressed about payments and cost of therapy, but to also be the source of their financial woes as well.

Sometimes since I’m both a mom and SLP, the boundaries become a bit blurry for me. I relate to them so personally, but in reality I need to be there for them professionally.

Tonight I am full mode of parent. Why insurance doesn’t cover a neurological disorder like apraxia is freaking beyond me. Don’t get me wrong, some insurance companies do, but most do not; and we are the lucky people to fall in that DO NOT category.

When Ashlynn was dx I was on maternity leave and was living partly off savings I had accrued while working full time. I happen to be a good saver. However, even the best saver in the world can’t prepare someone for paying $65 per 30 minutes every week….and that’s not even what research says a child should receive. Yes, RESEARCH saying children with apraxia need 3-5 times per week of intense intervention. We all quickly learn insurance companies don’t give a $hit about research. Lucky for me I was an SLP so I could feel confident that I could continue the sessions throughout the week, but even still, that kind of money isn’t just chump change.

Add on global apraxia challenges as is the case with Ashlynn, and we quickly find private OT and swim lessons adding up as well. I seriously can hear “ching ching, ka-ching” in my head right now.

Insert CASANA. Two people on their staff of three dealt with the same issue back when their children were young. They fought insurance companies and lost and charged up credit cards with therapy bills. Thanks to their struggles and their desire to help those who came after, families like mine at least have the option to apply for grant money funded by CASANA when insurance companies indifferently give us the finger.

I’m in such a better place now, emotionally than in the past. Despite gains though, incredible gains really, Ashlynn is still so damn far behind; and when I have to fill out an application begging someone to help my child because insurance doesn’t consider it a congenital malformation or whatever the hell insurance companies have decided they will only cover….it sucks. It sucks to put in writing how your child, who is your hero, who wakes up everyday with a smile and works so hard in therapy, still struggles to do a basic human right: communicate. This was my plea tonight, and I thought I would share.

Ashlynn was dx with CAS at the age of 2 years 11 months. Since that time the dx made a huge difference, as it afforded her the appropriate treatment approach. For as many gains as she has made with speech articulation, her scores do not show it. Recent testing in the Spring done by the school for her re-evaluation, revealed scores well below the average range in all areas, except for that on a single word articulation test, which came in barely within the average range. You cannot imagine how heartbreaking it was to realize how hard she works and how much improvement she has made, only to be faced with scores that are still significantly below average for receptive language, expressive language, word finding, motor planning, and pragmatic skills.
These deficits are impacting her reading in the way of phonemic awareness, letter name and letter sound accuracy, among others. These deficits impact her socially because she can’t keep up with the complex imaginative language girls her age now have. These deficits impact her writing and classroom participation in group discussions.
At home, she is still unable to accurately relate personal narratives due to her crippling word finding and expressive language deficits, despite seeing the wheels turning in her head desperate to come out.

Ashlynn has to fight everyday. She has to fight to speak. I gain my strength in her and know if she is still willing to fight, then I have to fight for her and help her get the services she needs. I know she can overcome this. I KNOW it, but she needs so much repetition and help. She will rise to the challenge though, and that is why we need this grant. To continue the work Ms. Deb puts in along with Ashlynn’s team of other therapists, and of course, Ashlynn herself. Thank you for your time and consideration.

To learn more about the Small Steps in Speech Grant visit their website: http://www.smallstepsinspeech.org/

October 29, 2015
That time I was hacked: A warning

A couple days ago I received frantic text messages, emails, and private messages to all my social media accounts. My heart started racing so fast as I read them:

“Hi, I know you don’t know me, but my name is Jaime Hunt and your husband has been having an affair with me. Please call me back. If you don’t believe me, check your phone records. I’m so sorry, I didn’t know he was married. He has been going under the alias Jeremy Moeller. I’m so heartbroken. I have two kids with severe autism myself.”

You know, call me naive, but I never expected to be a target for a scam, and really didn’t think my blog would be hacked. I mean, afterall, it’s not like you’re going to get money out of me. I don’t even have ads on my blog because my blog is not and never has been about profits.

So…with that in mind, I decided to call her. Not because I thought my husband was cheating, but more to see what she had to say. Okay and maybe a part of me thought “oh my God, could he be cheating?”

It was clear to me from the beginning she never met my husband. Her dates didn’t add up, she didn’t describe my husband, and I knew that part wasn’t true. My blog was hacked though and so it had me thinking, who was Jeremy Moeller?

She sent me his twitter page and my family picture was his profile picture. Um…creepy!! WTF?? I report
ed him to Twitter.

I told Cody about all this when he got home. He called her, she answered, and gave him her sob story too about how she had been conned by Jeremy.

She texted me later that night crying that Jeremy keeps threatening her. She talked about being a single mom again with her two kids with autism and I started to get suspicious. I read autism blogs. I know autism blogs read me. I know what moms who have kids with special needs say, and she wasn’t saying it. She was saying what she thought I wanted to hear……but it wasn’t true. I knew it. She sent me pictures of two boys. PICTURES. I debated whether or not to post them here because I have a sick feeling she probably stole them from someone trying to do good by spreading autism awareness. I’ve decided not to further her sick perpetration. I found out later this person has many online aliases that she uses to attach herself to popular news stories, gain trust, and then hack the person’s personal accounts to commit whatever fraud she possibly can.

Isn’t it amazing what people can put their energy into? While all my energy goes into apraxia, some people put all that energy into conning other people. It makes me shake my head and kind of laugh. What a sad, sad woman she was must be.

Lucky for me, my husband is a software developer and manages my blog. Though my blog was initially wiped out, he had a backup through August 16th. Now that this happened, he has added a lot more security measures. Seriously though can you believe he even has to do that? It’s a freaking blog intended to spread awareness for a cause. Some people are so sick and pathetic. At first I was mad, but then honestly I just felt pity. I personally find it worse to be pitied and that is exactly what I have for this person.

Pity.

For all the challenges in my life, I have found blessings and light. Unfortunately for this person, she only lives in darkness and tries to feel better by attempting to pull others down into it.

In a last ditch effort she PM’d me under Kelly Hgege warning about Jaime Hunt..you know…herself. Seriously, fool me once shame on you, fool me twice shame on me. After I blocked this name, that profile too “mysteriously disappeared.” I’ll keep adding names the more I get if she’s not given up yet. That way I can warn other people. Keep a running list for when shit like this becomes illegal and they can find her and nail her.

How truly sad though. How truly sad to masquerade as an autism mom. Maybe she too finds strength in these women as I do, so much so she has to pretend (badly) that she is one of them. She will never be though.

I assume she will continue her sad existence attempting to prey off of other people. I write this blog as a warning. As much good floods my newsfeeds each day, there is someone so desperately trying to find the hope we all have found in the midst of our own darkness, that they can think of nothing else but try to pull us all down.

My dad used to say, “When someone tries to pull you down, it’s to make themselves feel higher.”

Unfortunately for her she doesn’t know me. People like her only strengthen my resolve. People like her only make me fight that much harder. People like her don’t understand I’ve already been knocked down and the wind blown out of me. Apraxia…autism….or any dx given to your child will do that to a person. So yes, we’ve been knocked down but we’re all still standing.

October 28, 2015
Fight night: Are YOU in?

Before Ronda’s last fight, I tried to rally our apraxia community to participate in a hashtag campaign showing our suport. You can find the post here:

Why I fight: Inspiration from Ronda Rousey

I have actually had that post hidden until tonight since at that time, Ronda had yet to say she had apraxia and I was getting a lot of backlash from people who didn’t really seem to see my vision.

Ronda has another fight coming up in November, and I just think it’s cool that we can all rally together and support her. This may sound weird, but to me, watching Ronda beat her opponent is like watching her beat apraxia personified.

Apparently Ronda herself has received some backlash for fighting; and she attempted to explain herself…explain why she fights, in an article she wrote for the Herald Sun.

To me fighting is not an exhibition of brutality or a glorification of violence.
Fighting is a metaphor for life.
Everyone you meet every day is fighting for something, but life gets complicated and what you’re fighting for sometimes isn’t very clear.
But an actual fight is black and white, a relief from all the grays in the not so literal ones we’re all engaged in.

I don’t know what you think about when you read that, but I think about my life, and Ashlynn’s life, Cody’s life, Jace’s life, and how she is right. Fighting is a metaphor for our life. If it weren’t, there wouldn’t be a popular meme out right now that everyone seems to relate to:

Just because we don’t know someone’s battles doesn’t mean they aren’t taking place. They are. Everyone is battling, fighting, or overcoming something. I believe life is about learning, and to learn,to grow,we have to overcome a battle.

Some people are open with their battles, like Ronda. In her book she is not shy about admitting her battles with: a speech impediment, bulimia, a relationship with her mom, her dad’s suicide, poverty, and failed relationships. You know what though? You know what makes her so inspirational? It’s that she had those battles and overcame them all. Only when people are willing to share there stories can we find our own hope and inspiration in them. We relate to them and think, “I can do that too. That ending can be MINE too.”

That’s why I’m so excited that THIS time, for this fight, I have more people on board supporting Ronda. I want her to know that her support did not go unnoticed. When you are part of a small community like apraxia, someone coming out on the big GMA stage is pretty incredible. It’s also a time for all of us to come together and to cheer for hope. To cheer for success.

Saturday November 14th is her next fight – this one is in the ring.

https://www.youtube.com/watch?v=2jSKMoXTvaQ

And you can bet I, along with others in the fight to Knock Out Apraxia, will be watching.

Want to be involved in spreading awareness about Apraxia through the upcoming #KnockOurApraxia campaign? Join the Facebook group…

Ronda Rousey: #KnockOutApraxia

Oh and remember, “every revolution, starts with a fight.”

October 28, 2015
I waited for this moment for so long…so why I am still sad?

Original appeared 9/13/15

My husband’s sister was married last night. Ashlynn was the flower girl and like any flower girl, she absolutely adored all the attention. Ashlynn can speak now, and speak well where most people understand her. If she’s at a loss for words, she’s smart and falls back onto one of her scripts, her most favorite being, “what are you doing?” She’s smart like that, because it takes the pressure off her and forces the other person to answer w
ith more than one word.

Before the dancing really got underway, Ashlynn held out her hands to me and asked me to dance. I was initially lost in thought because the song that was playing was Mumford and Sons “I will wait.”

I wrote about her and that song some time ago, and I was trying to remember how long ago it was: I will wait

…but alas I was pulled out onto the floor and danced the rest of that song with her. I’m so glad I did, because it was the last time that night she would want to dance with me again.

She lit up the floor imitating dance moves, spinning in the center of a group of women, and engaging anyone else she could. When I asked her to dance later that night, she would move away from me, or flat out tell me no!

I told my husband my woes, and he said the most profound thing.

“Laura, you can’t be sad. Look at her! It’s the first time she can fit in without help.”

And he was right! Imitating dance moves like gangham style (if you don’t know this dance move google it) seems easy, but if you are a kid who has global apraxia, imitating any motor movement sequence is an accomplishment; and she did it, time, and time, and time again. My nephew told me when she put on her dress she spun around “like a cupcake.” It was such a great visual and I was sad I missed it, because I had yet to see Ashlynn do that. I remember being a little girl and I loved to spin and have my dress poof out; but Ashlynn has never been able to get the motor plan down to spin fast enough….but she did tonight.

As I watched her smile shine brighter than the dance lights, I realized my husband was right. It still made me sad, but children aren’t meant to hang onto to their mothers. They are meant to fly away, or dance away as the case may be.

So I took the time to dance with my son. I wanted to sit, tired from chasing him all night, but I realized again, so glaringly, that the days may be long, but the years are so short, and so we danced. We danced like no one was watching, and I smiled at him, and he smiled at me and I tried to get lost in the moment; and that moment was….amazing.

When the wedding was over, I still had Mumford and Sons ringing in my head.

“I will wait, I will wait for you.”
“I will wait, I will wait for you.”

Everything I have done has lead up to this moment. Watching her when she was three years old struggle and almost fall to get on a short trampoline her classmates were jumping on, and then only being able to march on it broke my heart into tiny pieces. Watching kids do a bear walk on their hands and feet while Ashlynn was in the back with a teacher holding her core just so she could feel what it would be like to be in that position…. How would she ever catch up? The other three years old bouncing gregariously away and she could barely get on without falling.

I vowed to never give up. I vowed to find away, I vowed to wait. With tears in my eyes I would always walk by her side and wait for her………and tonight, the waiting was over. It was here, now, in this room. She looked like everyone else. She could fit in without me or Cody helping her, and as she danced I was so grateful she took time to dance that one song with me, the symbolism and history of it surely lost on her. That damn song now. How will I ever listen to it again and not cry? A girl with no voice sang her first tune to it, and asked her mother for our first dance, and just like that, a painful chapter closes, but a new one starts. Watching my little girl slip through my fingers will be something I’m sure I will feel many times. I didn’t realize when I vowed to wait, I was really waiting for her to slip away and become more independent. I didn’t quite realize I was waiting for her to not need me, and that feels weird now somehow. I know this is how it should be though, so I’ll try and smile as she dances away.

I Will Wait Lyrics

Well I came home
Like a Stone
And I fell heavy into your arms
These days of dust
Which we’ve all known
Will blow away with the new sun

But I’ll kneel down
Wait for now
And I’ll kneel down
Know my ground

And I will wait, I will wait for you
And I will wait , I will wait for you

October 28, 2015
To the woman who said my daughter “really stood out.”

Original post appeared 10/5/2015

We all went to a pumpkin festival over the weekend. My kids had a blast riding the wagon, picking out their pumpkins, drinking apple cider, and their favorite……dancing to the band. It was a bluegrass band with a standup bass, a fiddle, a guitar, and the occasional banjo. My kids loved dancing and when songs came up they knew like “Skip to my Lou” and “Shoo Fly,” they were proudly and loudly singing along.

Ashlynn was wiggling her hips and dancing. She would occasionally look back and I would pretend I had been clapping the entire time to encourage her. She would turn back around to the band and continue her dancing.

An older woman and her friend sat down next to me. She noticed right away Ashlynn was my daughter and asked if she was mine. I told her she was.

A little while later, she commented, “I love how uninhibited she is.” I smiled and agreed. This woman started clapping with me during one pause when Ashlynn looked back, and she kept clapping. I started clapping with her and continued, even if Ashlynn wasn’t looking back. I love music too and it’s hard for me to sit still, so I was happy to have company. Besides, I thought. If I want Ashlynn to be confident and “dance like no one is looking” as they say, I need to model that myself.

More people started to clap. Ashlynn kept looking back more now, but not to me. This time she was enticing the crowd to clap along. The more people clapped the more gleeful she became. Her smile was radiant.

“She really stands out,” the woman said, and for a minute my heart fell. What does she mean??

“She’s a natural performer,” she continued.

I hope the look on my face was beaming with pride, but I doubt it was because what I was thinking is that all I have wanted is for people to believe in Ashlynn like I do, like her family does, and see what WE see. This year has already been better with her school team, and of course her private SLP is awesome, but what I was thinking as this lady looked at me with her kind eyes, gentle smile, hands clapping, was “lady, you have NO idea where we have come from.”

We went back to looking at the kids and enjoying the music. They were getting a lesson on how to play spoons. You would gather two spoons the same size, turn them back to back, hold them a certain way and then slap them on your knee. Ashlynn was the only child who picked it up and did it correctly.

“She’s got it!” exclaimed the woman. “Look at her!” She’s got it!

I looked on and saw Ashlynn had in fact mastered how to hold and play the spoons, but she couldn’t quite coordinate getting her leg up to slap them, so she took one hand and held up her leg while the other slapped the spoons. My wonder was cut short as I looked over to see my son who had given up on the spoons zero in on the fiddle laying on the ground behind the band.

Uh oh

I jumped out of my seat and went weaving through the crowd but it was too late. Jace looked like he had found the golden treasure, so you can imagine the reaction when I snatched it out of his hands and put it back. Cody came in and swept him away to timeout.

I went back and sat down.

We listened to a few more songs before the band stopped for the day. At the end, the woman offered me 25 dollars worth of tickets.

“Oh I can’t repay you, I have no cash,” I stammered.

“No dear, take them. I bought too many and it was a joy watching your children,” and just like that she had moved on with her friend.

Her words were echoing in my head:

“It was a joy watching your children”

“She really stands out”

“I love how uninhibited she is”

I looked down at the tickets and felt tears in my eyes. I had just written a post about being thrilled that Ashlynn was fitting in, but as a reader reminded me, perhaps I was looking at it wrong and I should remember Ashlynn was born to stand out.

For once, I felt happy that Ashlynn had “STOOD OUT,” so thank you random woman at the pumpkin festival. Thank you for seeing Ashlynn for who she is, and for paying forward your kindness; and to Ashlynn, may you never lose your uninhibited joy.

October 28, 2015