A tale of two roles: navigating my role on both sides of apraxia.

I first met a fellow mommy of apraxia at the Denver Apraxia Walk.  She was pleasant with kind eyes, and said she felt her 5 year old son needed a change up in speech therapy services.

The next week her son was scheduled for therapy at the private clinic in which I work.

In most cases, I have my parents come with their child into my office.  I NEED them to see what I see.  I NEED them to do what I do.  They are with their child the most, and they are completely capable of carrying over what I am doing, as long as they know WHAT I am doing.

Normally the child might be somewhat distracted by the parent; however, this day, I was the one distracted.  Not by my client, but by his mom.  There isn't one word to describe her face, but there were multiple adjectives rolled into one: worry, anxiety, fear, hope.

These are only a few, and honestly, they killed me.

I understood more when she said she had successfully home schooled 4 other children, some even in college.  I admired her.  She not only stayed home and raised her kids, but she taught them school as well.  Their entire childhood development rested on her shoulders and she had done a good job.

But her baby.  Her last child.  This one was different.

I felt her pain.  I absorbed her worry.  I took responsibility for her hope.

I knew I could help her son.  He wasn't receiving the right therapy.  That was evident from his first session.

I was so moved, I came home and told my husband.  I described her face and how it was hard for me to take because I kept absorbing all of her emotions.

It's hard to watch a mother visibly show almost every emotion I went through with Ashlynn's dx, but then be able to turn that off and be the professional SLP I need to be.

I recently watched an initial video I took when I saw him.  Again, though I was trying my hardest to focus on him, I couldn't help but look at his mom in the background.  The worry on her face is tangible.  I just want to yell out, "I will help him mom."  "Slow down."  "Stop worrying."  "He is going to be okay."

Unfortunately, I know saying all of those things is like telling the sun not to rise.  A mother's worry cannot be extinguished.

Last week though, something was different about her demeanor.  A softness was in her face. Upon further questioning, I discovered her oldest daughter came home from college and told her she saw a difference in her little brother's speech.

That's all it took.  Outside validation from an inside source.

I'm sure that doesn't mean she's still not worried, but I hope a small weight, even if ever so tiny, was taken off her shoulders.

Working our way out of the apraxia tunnel

Ashlynn has been saying things lately that are really showing higher level thinking. You'd think this would be glaringly apparent to me, but it really IS crazy how much language gives us an idea of what is going on in their brain.

She's been VERY interested in her schedule, and where she is going the next day.  I still haven't made our visual schedule, but it's on my to do list.  She usually asks me though while she's laying in bed to go to sleep,

"Mama, what are we doing today?"

"you mean tomorrow?

"yes"

"Tell me that.  What are we doing tomorrow?"

"What are we doing, tomahyo?"

And then we talk about it.  She loves it when her grandma drops her off at school and I get to take her to her class.  This happens on Tuesday and Wednesdays.  She used to just keep asking 

"you takin me to school?"

I would reply, "Grandma will take you to school and I'll take you to class."

I've been telling her that since she started school.  This week she finally said, 

"What are we doing today mama?"

"you mean tomorrow?"

"yes"

"Say that, What are we doing tomorrow?"

Instead of repeating it back to me, she asked, "Grandma take me to school and you take me to class?"  

This may seem small, but I was sooo proud!

She also asks me who I work with almost everyday and I usually tell her my coworkers or colleagues.

Well the other night, she said, "who you go to work with, mama?  Construction workers?" 

LOL  

I love it.  It makes my heart smile, and in those moments, I know everything is going to be okay.

My last update has to do with school.  This is her third year of preschool.

The first year she came home singing (with 1-2 sounds) the melody to the baby bumblebee song.  By the end of that year, she was also telling me who her friends were in school.

The second year, she would tell me who she played with for that day, but that was usually the extent of her school reporting.

This year, her third year, she's identifying the letters of her name all over the place.  She also told me the other day when we were talking about arctic animals and that polar bears live there, 

"I live in Colorado."  

Me: "Did you just say you live in Colorado?"

Ashlynn: "Yes, my teacher tell me that."  

I sat their in awe.  This is the first time she's ever told me something she's learned at the school.  Heck, this was the first time she said something that she hadn't learned from me or that I hadn't heard her say before. 

I see the light at the end of this tunnel that is apraxia.  To be honest, I've seen it for some time now, but I feel we're getting closer to making it completely out.

September Specialty Series: Using AAC (Alternative and Augmentative Communication). A mother's story.

To continue my September Specialty series, I want to introduce Merry. Merry is an amazing mom, and I wanted to feature a mother because in my opinion, parents are the experts on their child.  I think it's important professionals keep this in mind, so I'll say it again.

Parents are the experts on their child.

Her daughter is using an AAC (Assistive & Augmentative Communication) device at the age of 2 ½!!  I thought she was the PERFECT guest to talk about AAC because many parents aren’t even told it’s an option, or they are told their child is too young.  I’m a big believer that mothers know their child better than any professional and are their biggest advocate.  Merry is proof of this!  Thanks Merry for guest blogging!

Tell us a little bit about yourself and your child with apraxia.

I am a young stay-at-home mom with no background or experience with speech or medicine. I’m actually a funeral director by trade and education. However, I consider myself very science-minded and I try to do things in an evidence-based manner whenever possible. I think that’s been very helpful to me in my journey as a special needs parent.

My daughter, Elanor, is my only child. She is 2 ½ and absolutely loves music, dancing, animals, and most children’s television programming. She is especially fond of Blue’s Clues. She has a lot of trouble learning to speak due to childhood apraxia of speech. She also has dyspraxia, which is basically a full-body apraxia. This makes a lot of other things hard for her, including things like running, jumping, or putting on shoes. She has had her communication device for about a year now. It is an iPad mini with a communication app called Speak for Yourself and an amplified case called an iAdapter. We call it her talker.

Image: http://imgur.com/RppfuAn

When and how did you discover your daughter would benefit from a device?

I remember being at a friend’s daughter’s birthday party when Elanor was about a year old. There were several parents all bunched into a corner talking about their children’s speech problems. Most of their kids were older, and some were already in speech therapy. My husband and I looked at each other kind of pridefully, because that was one problem we knew for sure that Elanor didn’t have. At one year Elanor may not have been walking (or anywhere near walking) but she had a good number of words, probably about 10.

At 15 months when Elanor still wasn’t walking, we followed a random tip and pursued ear tubes for her. We had heard that fluid in the ears could mess with a child’s balance, and that seemed to be Elanor’s problem. We had about a month of many many doctor’s appointments to look at her ears and talk about tubes. It was during this time that my husband and I kind of looked around and realized she hadn’t said anything in a while. Sometime between 12 and 15 months she lost all of her words and most of her sounds and we had barely noticed. It was assumed at this point that the ear tubes would fix everything. She had ear tube surgery at 16 months and walked two days later, but she remained nearly silent.

At that point we were already in the process of getting early intervention from the county due to the walking issue. At the first assessment they were no longer concerned about her walking but shared our concern over her speech. We were told to come back in a month if she still had no words. It was during this nearly silent month that I happened to read something in a mommy forum about apraxia of speech. A lot of it really seemed to fit. Elanor couldn’t stick out her tongue, she couldn’t pucker to kiss. She had a lot of trouble eating. Her speech had progressed backwards instead of forwards. The symptoms really seemed to match. Of course, I couldn’t be sure about any of the main symptoms of apraxia (like inconsistent errors in speech) because in order to see those symptoms she would have to be able to speak, which she really couldn’t.

During one of my many googling sessions I came across a video on YouTube of a child with apraxia using a communication device. He was using Proloquo2go (a communication app on the iPad) to ask his mother for a snack. I remember how incredibly happy he was to be able to tell his mom exactly what he wanted. I knew then that I wanted that for Elanor. I made an appointment for a speech evaluation with a private clinic. We discussed a communication device at the very first appointment and things went from there. Elanor was 18 months old when she started using her device. Here is a video of the first time she ever used it:

Video: https://www.youtube.com/watch?v=WnxEEy_9i4I

What advice would you give to other parents who have been told their child is not a candidate for AAC.

Here is what I have to say to them: your child deserves an opportunity to communicate their thoughts and needs without having to wait to learn to speak and they CAN do it. This recent blog post from a Speak for Yourself creator basically blows away the entire concept of needing certain skills to be able to use a device: http://www.speakforyourself.org/2014/07/22/myth-augmentative-alternative-communication-aac-pre-requisite-skills/

I know that Elanor continues to be one of the youngest AAC users that many speech pathologists have ever seen. This isn’t because toddlers can’t do it, it’s because they haven’t been given an opportunity to do it because people think they aren’t ready. They are. Your child is too.

A big myth regarding AAC is that the child will “give up” trying to talk if they are given a device.  However, research refutes this.  As a mother though, how do you respond to this?

Using a communication device is hard. It’s slow. It is so much easier for me to say things out loud than to say them on the Elanor’s device. For Elanor that’s not true because speaking is so difficult for her, but the moment she can speak a word intelligibly she will always choose to speak it because it is faster and easier. Not only that, but not everyone has a device. Everyone around her is speaking aloud all the time. She would obviously prefer to be doing that.

I also think this worry about your kid “giving up” on speech is really misguided because the device helps with speech so much. There are a lot of theories I’ve heard about why this is the case. What I know for sure is that it works. The more we push Elanor to use the device the more her speech blossoms.

Here she is a couple of weeks ago telling her Daddy “I don’t know”, her first real sentence.

Video: https://www.youtube.com/watch?v=30Ygjgp-4Mk

Who programs the device and who teaches your child how to use it?

Me and me. I know this is different for some people who get their device through their child’s school, but since we bought it ourselves we are in charge of it. Programming Speak for Yourself is actually really easy. That’s one of the reasons I chose it over some other communication apps. There’s also a Speak for Yourself User’s Group on Facebook that is incredibly helpful with any questions about programming or anything else.

I am able to quickly add words and pictures to Elanor’s device to make it more personal. She has all her family members and friends names and pictures in there, every cartoon character, every cartoon. Her device is really very specialized for her.

Here she is asking to watch Blue’s Clues:
Video: https://www.youtube.com/watch?v=rZAPrJu89VU

As far as teaching her how to use it, I mostly do that through modeling. This means that I speak through the device just like she does. If you think about it, children learn to speak by hearing us do it. It doesn’t make sense for them to learn to use a communication device without seeing someone do that too. I get guidance on how to do this from Elanor’s speech therapists and also from the creators of Speak for Yourself, who are incredibly involved and helpful. Sometimes it seems tedious, especially if it doesn’t seem like Elanor is paying attention. I learned pretty quickly that she is always paying attention, even if it doesn’t seem like it. It is incredibly rewarding to see her use a word or sentence I showed her days before when she seemed entirely uninterested.

Many parents of children with apraxia report increased frustration and tantrums due in part to their inability to speak or communicate in some way.  Did you have a similar experience and find that the device reduced your child’s frustration?

I didn’t have that problem before we got the device because she was so young when we got it. She has had some means of communication, whether it be ASL or her device, for a long time. However, now that she has become more verbal I have noticed some frustration when I don’t understand what she is trying to tell me verbally. I usually have to redirect her to the device, where she can usually tell me what she was trying to say. That’s why it’s so important for me to keep modeling and using the device with her even though she is able to talk more now. It is an amazing source of relief for both of us!

This video shows her right after I spent about 5 minutes trying to figure out what she was asking for:

Video: https://www.youtube.com/watch?v=VL1hiF3aKu4

How did you pay for the device?  Are there funding sources?

The first device we had was an iPad 2. My parents bought the iPad (around $500) and my husband’s parents bought the Speak for Yourself communication app ($200). We later replaced the iPad 2 with an iPad Mini, which we paid for ($300), and we used GoFundMe to crowdsource funds for the amplified iAdapter Case ($400).

Compared to dedicated devices like a Dynavox, it’s pretty inexpensive to purchase an iPad mini and communication app. We’re talking the difference between $500 and $5000-$10,000. That being said, $500 is still a lot to come up with out of nowhere. For funding sources I suggest family members, churches, and local charities. I know most churches would love to fund something like this for a child in their congregation.  CASANA also gives away iPads once a year to kids with apraxia, so that’s something to look into as well.

Do you have any additional comments/recommendations/or final thoughts that you want to tell parents who are experiencing the pain of having a child who struggles to speak?

I just want to say that having this device has helped my daughter immensely in ways I never knew it could. I am a part of many groups of parents with children using AAC, and all of these children are doing better than they would be without a device. Their speech isn’t hindered, it’s helped, and their parents have been given a chance to really know them.

Almost every day on online apraxia groups I see parents complaining that their child can’t tell them things. They don’t know their child’s favorite things. They don’t know what their child did at school that day, etc. I sympathize with these parents, but I can’t empathize with them because I honestly don’t know what that’s like. Elanor can tell me all those things and more with her communication device.

I guess in the end what I want to tell all the apraxia parents out there is that you can know your child, and they can have a voice now. There’s no need to wait until they can speak. This technology is available and it is amazing. It can change both of your lives forever.

Incredible Merry!  Elanor is so lucky to have a mama like you! 

To read more about Merry and Elanor visit her blog: http://aacabc.blogspot.com/

Turning Pain into a Purpose

Two years ago,
 I found out my almost three year old first born had Childhood Apraxia of Speech (CAS).  Despite being an SLP and treating CAS at the elementary level, I failed to recognize it in my baby.
It was a VERY difficult time filled with overwhelming sadness for my daughter and guilt as her mother...an SLP who didn't realize she had CAS.

It rocked my world.  
Not only did the dx devastate me, but her silence and struggle to speak was truly heartbreaking.  You CANNOT  appreciate how complex speech is until you watch a child struggle to speak.
I was sad and I was angry.  I had a master's degree in Speech/Language Pathology, but my education about CAS consisted of 20 short pages. Every time I think about this, write this, or say this, I can't help but shake my head.  This isn't right.

I decided soon after I would become an expert in CAS and I would help not only my daughter, but other children who were the same.  I had NO idea how I was going to do this.  I researched like crazy.  I found out a national Apraxia conference was coming to Denver the next year.  I took it as a sign.  I signed up for webinars.  I created a binder full of CAS treatment and research.  I watched a three hour Kaufman video at my private practice.   I talked to my cousin who is also an SLP, and she said she had two videos from David Hammer and Ruth Stoeckel I could borrow.  I devoured them.   I expressed my desire to specialize in CAS to my clinical director.  She didn't blink.  I had her full support 100%.

After attending the Apraxia National Convention, I found out about an apraxia bootcamp.  I wanted in.  I talked to the founder of CASANA, and she explained it was highly competitive.  The wind kinda went out of my sails.  She still encouraged me to apply, but I didn't feel confident.  The clinical director at my private practice started filtering the kids with apraxia to me.  Her faith in me was affirming, and I was more determined than ever.

Then, I found out I got in.  I was a mix of emotions.  This is what I wanted, but it also meant leaving my family for FOUR days. Being without my babies, my heart, would be hard.....but I absolutely believed in this cause.  I was going to go, but.... I had never flown alone.  I had never been to the East Coast.  I had never left my babies for this long.  I read a quote, "if it's both terrifying and amazing, then you should definitely pursue it."  Check and check.  Its "go time" as my daughter would say.

Then today, a little over two years after my affirmation, I received this.

CONGRATULATIONS go to Laura Smith for successfully completing her case study and now being:

CASANA Recognized for Advanced Training and Expertise in Childhood Apraxia of Speech." 


I AM an apraxia expert, recognized by CASANA for advanced expertise. I am elated.  The road here was difficult, but amazing.  I once read that the definition of happiness is "the feeling we feel when striving toward our potential."

 When striving toward our potential.  NOT when we achieve it.  So here I am.  What is my next goal?  What is my NEXT potential?  What am I striving toward?  I have some ideas.  Some small and some REALLY big.

One thing I've learned from Ashlynn though...a positive attitude, perseverance, and a willingness to fail and try again = success.

Last year of Pre-K

Today was Ashlynn's official first day to her last year of preschool.  It was also two years ago today I heard the words, "Laura, this is apraxia."                                                                                                   I'll never forget that.  It was like hearing something for the first time you don't want to believe, but that you instantly know to be true.                                                                                                                   Apraxia.  Apraxia.  No.  Not my baby.  Why apraxia? That one word brought forth all sorts of things in my brain.  Speech will be a struggle.  Learning to talk will be a struggle.  She will have to have a lot of therapy and she will have to work for every sound, every word, and then every sentence.                                                                                    I texted a colleague.                                                                                                                          "She has apraxia and I'm devastated."                                                                                                     I cried. My little social butterfly whose favorite word was "HI" would have to fight to be able to talk.  She would have to earn her right to do the ONE thing that brought her joy: To be social and speak to others.

It was a hard pill to swallow.  I remember I put her in her car seat, and as I leaned over to hug her I cried.  She smiled and asked me, "hi?"  I cried some more.        

Her first week of school though was nothing short of amazing.  She qualified for free preschool in a special needs classroom due to her needs.  You can read about that here. First week of Pre-K

Her second year of preschool brought even more exciting developments.

Encouraged!

Her first favorite

To Say your Name

Only positives

Today she was sooo excited for school.  When she came home, she wasn't able to really tell me WHAT she did, but it typical Ashlynn style, she could tell me WHO she played. with.  There was Mia and Carly, her teachers Kubra and Donna.  I'm excited, hopeful, and maybe a little nervous.  This IS her year to catch up. I'm doing everything I can as her mom.  She's in private speech and OT, she's still getting private swim lessons since swimming has been amazing for helping with her bilateral coordination, we're doing sensory and OT/PT activities at home, and of course the speech she always gets from me.  

We sure have come along way from that day in the car that I cried, and from that text message that said I was devastated.  Our ENTIRE family is different now, and we're all better for it. 

So bring it on school year 2014/2015!  We're going to give it all we got!

The high of summer! The fear of "back to school."

Oh summer, how I love thee. Filled with swimming lessons, play dates; visits to the park and zoo.

During summer, I get to see my children be children. Their carefree smiles light up a room, and the echoes of their laughter can be heard long after they lay down their head. Yes, therapy appointments are a way of life for Ashlynn, but even speech and occupational therapy bring positive updates from the session and we can quickly return to our days of play.

This summer I signed up to a few good facebook pages I found: MamaOT and Inspired Treehouse. I LOVE these pages! Instead of the packet of ideas I would get heaped upon my shoulders during the school year, these pages provide an idea a day to do with your child. Simple, easy, fun! When I just get one idea a day, the load seems MUCH more manageable. I was so inspired, I tried to do the same for speech and language on my SLP Mommy of Apraxia page, since I'm usually doing something related throughout my day with my kids since that at least, comes naturally to me. I really think they helped Ashlynn, and I felt good about incorporating some sort of speech, sensory, or occupational/physical therapy at home.

 My husband and I also saw HUGE improvements this summer in the motor realm. Ashlynn climbed a play structure that she had yet to conquer at our nearby park. Who knew how much core stability, bilateral hand coordination, and crossing midline play a part in climbing a simple play structure! Well, I'll tell you who know.

Parents of children who have dyspraxia!

At the local amusement park, she was riding the tea cups independently. My husband shot a video. During the first two go rounds she was just sitting there, but by the third go round she figured out how to spin the wheel to spin her teacup! You should hear my husband cheer. Who knew how much core strength, bilateral hand coordination, and crossing midline play a part in being able to operate a simple teacup ride.

 Oh yeah, parents of children who have dyspraxia.

 However, now summer is coming to an end. I see facebook posts ripe with updates along the lines of "I'm so happy school is coming up!" Or memes like this one:

Not me. School. Sigh. What can I say? I have a love/hate relationship with school.

 I firmly believe school helps children develop their social skills and gives them important language models, which is especially important for kids with speech and language delays. The first week my daughter went to school shortly after she turned three, she came home singing a tune I actually could decipher, and at that time she was nonverbal! That my friends, is the power of school!

 On the other hand, school brings new fears and new worries. I always thought, once she starts talking, I'll be okay.

 Not true.

Now I'm worried about her phonemic awareness skills, language lag, slow processing speed, and being able to write.

 My God how much do kids need to do and know now just to be ready for Kindergarten???

 I'm not looking forward to the IEP meeting, the parent/teacher conferences, the comparisons I try not to make when I'm visiting her classroom.

 Quite frankly.... It SUCKS. Apraxia STILL sucks!

 So no. I'm not ready for Ashlynn to go back to school. My SLP friend and mother to two young boys with apraxia who has a blog: Landon Journey just posted this song lyric the other day:

If I could make days last forever
If I could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you.

As my brother says though, "Life's not fair. Get used to it."

So farewell summer! I bid you adieu. You have been so kind to us this year. We have made castles in your warm sand, felt the glow of the sun upon our face, cooled off in your waters, and celebrated the milestones and successes at our pace. Though I'm anxious for the coming school year, I have faith you will be waiting on the other side.  Welcoming my children to your sunshine, casting light onto their beauty.

Why we need milestones, and why I can still be proud of my daughter.

I recently read a blog article about not buying into speech and language milestones.  The writer asserts:

"Because here's what I think of traditional milestones: f*ck them............My baby will do that when she's ready. This is not the Olympics, people."

She went onto explain that parents seem to make milestones into some sort of competition, and she doesn't want to buy into that.  I get her point probably even more poignantly that she does.  

My child was late with all of her milestones, and because she was late, I felt the sting and continue to feel the sting every time someone else's child on social media or in my life meets a milestone with which my daughter still struggles.   

This author was already sick of the comparisons, real or imagined, and just wanted to enjoy her baby.  Yeah I can relate, but lucky for her it seems, her child was just on their own timeline and would still go on to develop typically.  Some kids aren't so lucky, and those "milestones" become very important so that kids can get early intervention when they need it.

Oh she goes onto say, "Is your pediatrician happy at your baby's checkups? Good......remind yourself that no one's counting."

Unless of course your pediatrician IS concerned, or worse they're not and your child misses valuable early intervention.  

Oh, and no one's counting, unless of course you get to feel a punch to the gut when you are faced with low standard scores, percentile ranks, and descriptors like "definite dysfunction" or "severe apraxia of speech" or "below average," in black and white reports that have your child's name on the top.  Lucky for her, her pediatrician is happy and no one is counting.  

What about the other kids she wasn't considering who don't meet them?  

Yes, milestones make any parent crazy.  Yes, parents can get stuck on being overly proud of their offspring, but then again, they should be.  They're the parent!  I'm proud of Ashlynn for other qualities that maybe some other kids her age don't yet possess as adeptly including: 
Empathy
Sensitivity
Kindness
Thoughtfulness
Optimism
Perseverance
Bravery
Compassion

And why shouldn't I be?  I'm her parent, and I'm supposed to be proud of what she is good at.  I don't look at other parents with disdain who have kids meeting or blowing the lid off the milestones.  Jealousy maybe, but not disdain.  I think, good for them.  They should be proud of their child,  and every child deserves and needs their parents to be proud of them for their unique God given talents.

So, I decided to write a printable for the parents who are forced to look at milestones.  Who have googled milestones and felt the pit in their stomach when they know their child isn't meeting them. I wrote this so that parents will not say "F*ck them" but will instead pull up their big girl panties, and get the help they need for their child, no matter how hard and painful it is.

Speech and Language Milestones: Birth to 3

Speech and Language with Post it Notes

My daughter loves Post it Notes.  LOVES them.  She loves writing some small scribble on them and then proudly sticking them up around the house to put on display.

Today we drew pictures that included her target sounds to work on speech, but we also drew shapes to work on our pre-writing strokes for OT.

Based on the response from my facebook post, my kid's not alone in loving them!  Try it!  Easy and fun way to get speech practice in at home.

"I love you mommy!"

These words are cherished by any parent.  These words are eagerly anticipated.  When you have a child with a speech delay, the eager anticipation eventually gives way to desperation, and maybe, (though hopefully not) apathy.

Ashlynn has been able to say "I love you" for awhile now.  Once she really got good at imitating, we had her imitate it every time we told her goodnight and tucked her into bed.  Now that she's older, she automatically says it after we say it in any situation, and we are happy.  We are very happy.

Today though, I heard these words spontaneously.  She said them in a moment of pure joy and blessed me with them.

First, a little back story.  I've been home for a month now on summer break with my kids. It's awesome and exhausting.

I am admittedly not an artistic person, and I really could live without the messes that art creates.  I'm a writer.  Writing is so clean.  A pen and paper is all you need to create beauty out of words, which then are easily put away until later.

Kids are not writers.  They do not yet appreciate the beauty within words, but they love a good mess.  A good mess and me are not on good terms.  However, kids and neatness are not on good terms either....so what is a mom to do?

Ashlynn begs to do messy things.  Play with play-doh and proceed to get it everywhere including in her hair, in her shoe, and ground into the carpet even though she's playing on the tile in the kitchen.

Let it go mama.

Play with water in the sink.  Except the water inevitably ends up in a huge puddle all over the (small) counter, the floor, her shirt, her pants, and possibly needing a change of underwear.

Let it go mama

Play with the dirt outside.  However, the dirt somehow happens to turn into mud that gets under her fingernails, in her shoes, on her shirt, and again ground into the carpet that is INSIDE my house even though she was playing outside.

Let it go mama.

And I really have been trying.  Messes make her happy.  The tactile input is helpful for her SPD (sensory processing disorder).  I've really, really been trying to just accept the mess.

Today I was at Target getting some odds and ends.  I'm not an impulse shopper.  I only buy necessities and if I do I usually have a coupon or it was on sale.  I saw the dollar bins and I decided to take a peek.  I'm also not a window shopper, so this is unusual as well, but you know, I've become more flexible this summer and I don't know what has gotten into me.

I ran across foam stickers and my memory instantly recalled paper after paper that came home in Ashlynn's backpack this year full of random papers that had some scribbles and foam stickers on them.  I would never buy foam stickers.  What a waste.  They serve no purpose.  You put them on paper and then throw the paper away.  What's the point?  Something in me though remembered all of those papers and thought Ashlynn really likes these things.  I stood there awhile debating.  They were only a dollar, but it seemed like such a waste!!  But I think, Ashlynn really likes creating with them and (and this is my internal argument that allowed me to buy them) they are good for bilateral hand coordination since you need both hands and fine motor control to get the paper off the back.

I bought them.  Good.  Ashlynn will practice fine motor skills.  I'm a good mama.

I brought them home and she was happy.  Not overly happy, but happy.  She was busily creating when she randomly walked over to me and tapped me on the leg.

"Mama, Mama, MAMA!!"

"What honey?"

"I love you!!"

I'm stunned.  What on Earth prompted this?  And that's when I looked a few feet beyond her to the messy table, backs of foam stickers littering my carpet, and paper after paper full of foam stickers.

I gave her the biggest hug.  I might have cried.

As it turns out, a good mess and me have gotten closer.

Early literacy skills: Print awareness activity

The other night I was reading this book to Ashlynn.

If you're not familiar with the "David" books, they center around the main character David who is mischievous and frequently getting into trouble.  

These books are great for early print awareness!  As you can see, the print is larger and is written as though a child wrote it.  Ashlynn kept pointing out all the capital letters she recognized from her name.  Her favorite was /S/ and she would declare, "Look!  That's in my name!"  This is great for transfer of early letter recognition skills. 

The sentences are typically short, and contain no more than maybe 5 words per sentence.  On some pages, the words are separated onto separate bits of paper (see below).  

The reason this is great is because you can get your child pointing to each word.  This doesn't mean they need to be reading the word.  They just begin to get an understanding that those combination of symbols denote an orthographic representation of a word.  Ashlynn can't read, but she is starting to get the hang of pointing to each word while she reads (from memorizing the book).

As a bonus, the stories are relatable and entertaining to your child, allowing you work on oral language as well.

You play dirt with me?

We took our annual Fourth of July camping trip to Glendo State Reservoir in Wyoming.   It's a family tradition, so I decided to document her progress each year.  Last year's experience can be found here: Glendo 2013
This was only a few short days after our near drowning incident at her pool during swimming lessons.

Glendo is a HUGE reservoir, and a lot of our time involves the beach.  I was worried about Ashlynn's safety, and also if she would be too scared to go in the water.  The first day she kept her distance from the shoreline; however, the second day she walked to the shoreline and was watching her dad who was floating in the water maybe 10 feet away. Sensing she wanted to come in, he held out his arms.  I didn't see him at first and my sister motioned to me that it looked like she was going to go in.  I went running to her, but stopped just short behind her.

I saw my husband with arms outstretched encouraging her to come to him, and then I saw her little shoulders rise up big as she took a deep breath, and she marched in the water.  She marched through the waves, keeping her balance, until she fell into his arms with a big smile upon her face.  He hoisted her up into a floaty with him to enjoy floating in the water under the warm sunshine.

I looked on in awe.  She's so brave.  Her character is quite astounding to me, and I'm her mother.  She faces challenges, fears, and obstacles head on.  She never gives up. She is determined and resilient.

She also of course, rode our jet ski.  I wrote last year that she asked, "Ashlylnn play boats with daddy?" and this year, she announced proudly after riding, "I ride the je-si huh!"


One of her favorite requests this year was, "you play dirt with me?"  imploring anyone who would listen to play in the sand with her.  No one had the heart to say no, so she made quite a few friends and suckered in quite a few family members!

When it was time for fireworks, Ashlynn has historically stayed in the car.  However, this year, she again put on a brave face and ended up enjoying the show!  At times she would say, "that was too close!!!" but she never went back in the truck.

I like documenting some of her milestones on the Fourth of July, Independence Day.  It's so fitting since each year she becomes more and more independent.

Good teachers change lives

What a busy month!  Life definitely doesn't slow down just because I'm off for summer break!  I signed both the kids up for swimming lessons.  Ashlynn would be in the Guppy class for probably her 5th time, and Jace and I would be in the parent/tot class.

I decided that since it was the first day, and considering Ashlynn's aversion to water now following two traumatic pool events, here: I would stay on the side with Jace and watch to make sure she was ok. I realize now it was totally irrational, but I guess I was expecting she would have her same instructor from last year and she would be off and running.  She sure was excited at the thought of going swimming.  I snapped this photo while we were waiting for them to call off the classes.  Doesn't she look excited?

I have to admit, when they called off her instructor, he looked like he was 12.  Okay, not really, but he was young, new, a little hesitant himself.  Ashlynn refused to get in the water.  She cried hysterically as fear gripped her whenever they even mentioned it.  Another little boy in her class had autism, and his mom had to literally sit on the side and hold his arm or he would go swimming off under water, and another little boy had no desire to listen or follow directions.  I actually kinda felt bad for this kid as much as I did for Ashlynn.  He was in waaaaay over his head!

Week two, Ashlynn would let him take her out to practice skills, but she either had her arms gripping his face, her neck up, or her knees pulled to her chest.  She also refused to stand in the water and would only sit on the side of the pool.  It literally broke my heart.

There were some cute moments though.  When it was time to stand on the edge of the pool, she would hold the little boy's hand who had autism and talk to him and repeat the directions.  He never looked at her, but he seemed to listen and his mom seemed more than grateful.  Ashlynn was the only child to talk to him and she was the only person beside his mom that he would let hold his hand. I just thought, "Well that's Ashlynn.  Maybe she isn't here to learn to swim.  Maybe she has a bigger purpose."  Even though I was proud of her, my heart was still sad.  I lamented to my husband that I felt that she was actually worse than when she started swim lessons last year because now she wouldn't even get in the water.  

We tossed around private lessons and decided to do it.  I heard the instructor of my parent/tot class saying she and another instructor were the only two current certified staff.  I figured I'd go with her and had her write her number on the back of the card.  That was Thursday.  

On Monday, Ashlynn started her new two week session.  I just figured she would have the same boy, and I thought, well, maybe it's best because at least she knows him.  However, I was surprised when they put her in "Josh's" class.  I had seen Josh since last year.  He normally taught the older kids, or so I thought.  I would marvel about his amazing teaching ability and how his kids would respond to him.  I wished he taught the younger kids, but I had never seen him do so, until today.

Ashlynn went shyly with me holding her hand.  Instead of my usual speech of "Even though Ashlynn doesn't look like it, she has special needs and has a motor planning disorder that affects everything from her speech to her gross motor skills, so please keep an eye on her because she has had to be rescued twice" I said, "You teach little kids?  I only thought you taught older kids?"  He seemed surprised and said that was weird because he usually only teaches the little ones.  

I stepped back with Jace and turned around to see Ashlynn red faced, freaking out not wanting to get in the pool.  He put her in anyway and then bent his head in and said something to her ear.  I have no idea what he said, but she stopped crying.  Before I even knew it, I was in tears on the sideline watching her not only stand in the water but blow her bubbles and do her head bobs.  I sent text messages to my husband.  

When I looked up again, I saw this:

Full back float, head down, arms AND legs out relaxed, and trusting Josh.  She has NEVER, EVER, done this with anyone.  I looked on stunned and snapped another picture.  When she started to tense up, he leaned his head into her ear again and told her to trust him.  He told her he had her, and when she did it he gave her the biggest hug.  

Tears flowed.

To see the pride on her face, the confidence in her smile, the sparkle in her eyes....he did this in ONE day!! 

And what I realized was, I actually didn't care about the swimming.  I mean I do, but I was more proud of her being proud of herself.  He gave her confidence, he instilled a sense of accomplishment in herself and that is what being a teacher is all about.  He made her WANT to learn to swim.  

Good teachers change lives.

In this journey in apraxia, I realize and learn over and over and over again, that maybe we have to know the darkness to truly appreciate the light, and the light sure shone on us today.  

Baking with speech and language

Parents are always looking for ways to incorporate speech and language activities at home.  Whether it is to stimulate a typically developing child's vocabulary and language, or to help a speech or language delayed child; baking is great and fun way to work on speech and language.

The first and most important rule before you start, is you have to accept the fact that your toddler will make a mess, and that is just part of the process, or um, fun.

When I do baking or food activities with kids in school, they absolutely love it.  That's the key. When kids have fun they are at their best learning.  Also, baking is a multi-sensory activity, meaning many sensory systems are activated.  When children are using multiple sensory systems, acquisition and retention of skills is more likely.  Baking with your kids inherently promotes:
Vocabulary development
Sequencing
Following directions and comprehension
Pragmatic language - the social piece of language

Let me explain a little bit further.

Vocabulary Development:  For the young child, words are learned best in context.  Certain authors refer to this as "event-based knowledge."  Many of children's first words are usually embedded within scripts that are part of their daily lives.  Examples could be: bottle, cookie, doggie, bath, etc.  These words are said to them frequently throughout the contexts of their daily lives.  Baking provides the same event-based knowledge experience, and exposes them to new vocabulary.

Sequencing:  The ability to understand sequences and to sequence is an important skill.  Sequencing most simply refers to the order of things.  When kids get into school, sequencing is very important to understanding: patterns, math, a story etc.  Following a sequence of steps is inherent in baking and makes it the perfect activity for this skill.

Following directions and Comprehension: These two things fall under receptive language skills; however, they are very important to the development of overall language skills.  Kids who are good at retaining and following directions have less difficulty in school since they are not devoting a lot of their cognitive load on simply understanding and remembering what they are supposed to do.  Baking is a fun and easy way to help your child practice these skills at home.

Pragmatic Language: This is usually referring to the "social" element in language.  This involves the way language is used to communicate with others.

With a little forethought, baking can also be a way to sneak in more direct speech language targets while working with your kid at home.

Muffin Mondays and Waffle Wednesdays

This summer I implemented Muffin Mondays and Waffle Wednesdays. Ashlynn is VERY interested in what day of the week it is, so I did this to also give her a framework of her week.
Ashlynn's current speech/language needs include: syntax (the form or structure of a sentence), and consonant blends (two consonants found together in a word: sp, st, sl, fl, bl, for example).

It's important to know your child's goal, and then structure your baking around the goal.  Get creative, but it's not as hard as it seems.  In Ashlynn's case, I chose  the words: spoon, flour, stir.  For syntax, I had her ask me "Can I do it?" to work on her questions forms.

Then each time we used a spoon I had her repeat "spoon."  While she was mixing the batter, I would ask her what she was doing and cue her as needed to say the "st" blend in "stirring."  Instead of using 1 cup of flour, I broke it up into four parts to give her more practice saying "flour" each time she poured in the flour.  For an extra bonus, she had to put "stir flour" together in a simple phrase.  I would hold the spoon until she said the desired words, and then I would give her the spoon back when she was successful!  She loved it.

If your child isn't yet talking as much as Ashlynn, hum the 'm' sound while you mix the batter or if your child isn't great at imitating yet, just have him/her make any vocalization to request an item.  If they can't yet imitate even a vocalization, imitate any spontaneous sounds they make to provide an opportunity for vocal play. If they aren't really vocalizing yet, don't get discouraged!  Practice turn taking and reciprocal play.  They pour then you pour.  You stir then they stir.

With other clients who needed a final stop, I might have chosen the word "dump" and then every
time we pour in an ingredient, we work on the word "dump."

Really, the possibilities are endless!

In addition, you can also tell your SLP that you incorporated some great "distributed" practice throughout your child's day.  In motor learning approaches to therapy, mass practice refers to the production of a large number of repetitions of a single target(what you should be seeing in therapy) and distributed practice refers to hitting targets with a greater amount of time between trials or sessions.  However, distributed practice is very important for stabilization and generalization!  Parents are the greatest asset when it comes to carryover, because you are in a better position to afford the child numerous opportunities for distributed practice!  In addition, you can do it in ways that are fun and multi-sensory in the child's natural environment.

 

For once I went to school, and I heard only positives

Let's face it.  Being a parent is rough.  Whether you have a child with special needs or not, we all want for their happiness, that they will feel successful, that they will be confident, and that they will never hurt.  Of course we know that without trials they cannot fully appreciate the successes, without sadness they could never fully experience complete happiness, without hurt they simply wouldn't be human. 

School has been an absolute blessing for Ashlynn, my social butterfly.  She never let her limited speech hinder any of her relationships.  In fact, her first word was 'hi' and it was all she needed.  She could and still can engage anyone with that simple word and her beautiful smile, and they are hooked. 

But

That's why it was so hard to go to IEP meetings, parent teacher conferences, and get reports from her teachers and therapists.  No matter how many positives were relayed, we always sit there waiting for the

But.

She is so happy and works so hard,

But

She is friendly, sociable, and loving

But

She is an absolute joy

But

I'm not gonna lie.  The "buts" hurt.  It really doesn't matter if they are framed around 100 glowing adjectives, the "buts" can be overwhelming.  Especially when for one child she needs a

speech therapist
occupational therapist
physical therapist
special education teacher
social worker

They all come with their own set of "buts." 

Today though was different!!  Today, her last day of Pre-K, there were no "buts."  Today, as I picked her up, I heard this:

Teacher: "I have been blessed having Ashlynn is my class."
Social Worker: "Ashlynn is the sweetest, kindest child. She is friends with everyone, and everyone is friends with her."
Another parent: "My son told me this morning he was really going to miss Ashlynn. When I asked him what he would miss, he told me her laugh."

It just brings tears to my eyes. There's no standard score or percentile for that....but if there were she would be way above average. 
  
Ashlynn is my sweet, kind, loving, daughter who blesses those around her with her smile, her laugh, and her friendship.

No buts about it.

The day I realized apraxia has been a blessing.

Yes, you read the title correct.  I just called apraxia a blessing.  It took me a long time to get to this point.  I certainly didn't feel it was a blessing here 2.5 years, or here, New worries, or here IEP on the other side of the table, or here Background and suspicions.  I remember shouting "I HATE APRAXIA" "APRAXIA SUCKS!!" everytime I watched my daughter struggle.  Slowly but surely though, the blessings started to outweigh the diagnosis; in fact, blessings started to develop out of the diagnosis.

I was talking to a mom the other day from Georgia at Mommy Square, and she told me she has met a lot of friends because of apraxia.  It got me thinking that I have too.  I have a mom from Syracuse with whom I formed a connection because of our commonality of being mom's who were ALSO SLP's.  We shared our frustration at the lack of knowledge surrounding apraxia, and our mission to be educated on it.  I have a mom from Utah who has a daughter the same age as mine with apraxia.  We blog, collaborate, and fight apraxia together.  I met Sharon Gretz,  the founder of CASANA, the non-profit behind the apraxia-kids website.  Meeting her was a pivotal, inspirational moment in my life.

All these moms have one thing in common.  They all are incredible, inspirational women, and they all go through extraordinary lengths in the names of their child.

I am blessed to have found and to know each of them.  I am blessed to understand from an emphatic position what it is like to have a child with apraixa.

I am blessed that I was chosen to be her mommy, because through her I have learned the true meaning of perseverance and bravery by seeing them through the eyes of my daughter.

I am blessed because we have so many people in her corner.  Grandma's, Grandpa's, Uncles, Aunts, & cousins all cheering her on.

I am blessed because out of the struggle has come joys I could never have dreamed of or experienced myself.

I am blessed because though her dx could have brought distance between my husband and I, it only brought us closer toward the common goal of beating it.

I am blessed because my husband confided one day that when he starts to feel bad about the hand Ashlynn was dealt, he always sees her overcome it.

I am blessed because if not for her, I wouldn't have set a goal to specialize in apraxia, and in turn, I may not have met all the wonderful people I have met, or been able to treat all the wonderful children I am priveleged to treat.

I am blessed because I never take for granted one word, one sentence, or one song.

I am blessed because I know other parents who feel the same.

I am blessed because apraxia has taught me gratitude.

I am blessed from simply being her mother.

To say your name

Most people might take for granted their name. You have a name, you've always had a name, and basically that's that.  Kids with Apraxia have a name too, and they know it just like you.  There is, however, one difference.  Many can't say their name at first. Can you imagine?  How many times are little children asked their name?  It's basically the first question strangers ask them right up there with how old they are.

Every child deserves a voice, and every child should be able to say their own name. A name is not only your identity, it gives a symbolic representation of YOU.  A verbal representation of letters and sounds that come together and allow you to say YOU are YOU. A name carries history, geneology, and meaning to the carrier.  It's so important, that even if one vowel in someone's name is mispronounced, the offended will quickly correct the offender. Just recently in the news, John Travolta mispronounced Idina Menzel's name when introducing her at the Tony Awards read here and she reported that it threw her off for like eight seconds and she had to give herself a pep talk saying "stop worrying about your name and sing this song."

So...needless say.  A name is important.

I remember back to the early days of speech/therapy.  Her private SLP had a great idea.  In those days she was only working on CV and VC syllables.  We could get Ash, and we could get In.  We settled for Ashinn.  I actually was thrilled then when she said it.  After that, it took repetition after repetition to actually put the sounds together correctly and then more practice with her actually remembering and saying it on command.  I have a note from her school SLP frequently about how they would go around her preschool last year and practice saying her name when people asked her. 

I was okay with this, because as an SLP I know that L within the realm of what we consider a later developing sound.  Basically, it's still developmentally appropriate not to have an L at three years old, apraxia or not.  

Now Ashlynn is 4 years 7 months.  Just a few days ago my husband and I went to the grocery store and the clerk asked her, "What's your name?"  We waited for her to respond and she said "Ashin."  The clerk as expected said, "Oh Ashley, what a cute name,"  and as expected without even thinking, my husband and I both followed up, "Yes, AshLYNN."  

Then came today.  We were looking at pictures in our photo album that I was putting away.  In it, I had some pictures of her friends from school.  I was quizzing her on their names and she could tell me most of them.  We came to a girl named "Calista." Very deliberately, she said "Ca-Lista"  

My head whipped around.
"Ashlynn!  Did you hear the L sound in her name??  You said CaLista!!  Say it again, CaLista."

"Ca-Lista."  

"Ashlynn!  Do you realize that sound is in your name??  Say AshLynn."

"Ashhhhhhh-Lynn."  

And there it is.  Today, May 2nd 2014, Ashlynn finally said her name with all the sounds.  So funny how these small things bring big tears.

Calling all apraxia bloggers!! Let's link up for Apraxia Awareness Day!!

I read your stories daily.  I feel your struggles, I rejoice in your triumphs, and I nod my head in understanding.  You are my fellow bloggers.  I read your blogs like I'm checking the morning paper.  I read your tears and your smiles about your struggle with apraxia, and I share them with you about mine with my daughter's.  We read these stories as separate entities.  We close the blog and move onto the next, or we write our own story for that day.  What if we all wrote our story together?  What if we all weaved our experiences into an apraxia tapestry?  That is my dream in the Apraxia Awareness Link Up for Apraxia Awareness Day on May 14th.

I ran across the quote:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.

Margaret Mead

It's up to YOU and ME to spread awareness about apraxia.  It's only the second annual apraxia awareness day.  I am an SLP and many educators haven't even heard of apraxia and many SLP's don't know how to treat it correctly.  I want to read your stories.  I want to hear how you are spreading awareness and I want to link up with you in solidarity!

Please feel free to link up any posts related to Apraxia.  It can be anything! You fears, your successes, your diagnosis, your Apraxia Awareness Day Post, helpful tips, whatever!!  We want to see it! We want this to be a place to raise awareness for Apraxia, as well as to let others know they are not alone.  We only ask that you link back to link up at the bottom of your post!

An InLinkz Link-up

nacd apraxia app review

This was one of the first speech apps for apraxia that I bought.  It was enticing because it was a good price and the description looked much like a digital version of the Word FLIPS book I was using in therapy.

It starts with a screen that allows you to pick a CV consonant/vowel group, seen below.

For the purposes of this review, I chose the top group BPM.

 You then have your choice of levels.  Level 1 is really just to learn the pictures, so each picture is presented one time.  In Level 2, there are three required productions of the same word.  By Level 3 (see above), there are five pictures of the same word. 

By the time the you choose Level 8, the pictures change to have three different pictures depicting different words in alternating fashion.  (see below). 

You can choose to have the sound on, in which a verbal model is presented when you touch the picture; or you can mute the sound so a verbal model is not given when you press the button.

There is a also a "tracking" feature to tally correct/incorrect productions for data collecting purposes.

What I love

This app is great because of it's simplicity.  It's more fun for kids to practice these skills on the iPad then it is to use the flip book.  They are just more motivated by digital versions of everything these days!  Also, therapy for Childhood Apraxia of Speech requires A LOT of practice and repetition, and this app lends itself to multiple chances for repetitions in either blocked or randomized fashion (elements essential when treating motor based speech disorders).  

In addition, most of the kids I treat with apraxia like it.  You can get a quick "warmup" in using this app while getting a lot of repetition right off the bat.

What it's missing

I would probably use this app more, or longer during therapy sessions if it had some sort of reward or fun reinforcement.  However, since I only use it as a supplement to therapy, it's still a nice app to have. Also, just recently my daughter was confusing her t/k and d/g, so I went back to this app and we practiced using these pictures alternating between the two sound patterns.

The other thing that is missing is a voice record option.

Overall impressions:

I love this app for it's simplicity, price, and ability to get A LOT of practice in a short amount of time.  Most of the kids I treat with apraxia, and my own daughter with apraxia, have used this app successfully and enjoy tapping, repeating, and swiping the iPad.    I would highly recommend this app to parents and SLP's as a supplement to therapy for Childhood Apraxia of Speech.