SLP Mommy of Apraxia

Category: apraxia blog

Outloud Timer app Review and giveaway

Timers can be a useful way to manage behavior, promote task completion, or as a way to motivate the child. Digital clocks and timers are great and convenient, but they aren’t teaching kids an understanding of the passage of time, and are more abstract.

Outloud Timer is different. You have the option to set the timer to either seconds or minutes and then set the time.

A penguin appears and the child can draw a path to the treasure chest. The penguin waddles its way to the treasure box AND a digital countdown is also provided in a small box in the lower right corner. Once the penguin reaches the end, the treasure box opens with music and money sounds, and coins are displayed animatedly across the screen.

As a bonus, I’m also able to touch on some receptive language concepts while they draw the path, working on concepts like: around, next to, left, right, bottom, top, side corner etc. Some kids with a receptive language processing disorder have difficulty with these concepts, so this can be a nice easy way to sneak in some practice just by setting a timer.

In a surprise twist, one client I have actually thinks of this app as the reward! He was too distracted by using the app as a timer, but he LOVED drawing the path and watching the penguin complete it. Either way, it’s a win win.

Also, it’s available on both the iPhone and the iPad making it really convenient.

You can head to iTunes to download the app here where it’s only 99 cents! Or, enter to win a copy in my giveaway. Enter below

a Rafflecopter giveaway

I was provided a copy of this app for free to complete this app review. I was not offered any other royalties and all opinions are my own. ~ Laura

December 5, 2016
If you have been helped by this site at all, please give a #highfiveforapraxia

I originally started this blog as a way to spread awareness, and maybe commiserate with or even help others on this journey with me.

As a parent and an SLP, I have readers now who are also both. Hopefully there has been something you have found useful on my blog. I have thought before about trying to make money and monetizing my blog, but I personally hate pop up ads, and I feel they would distract from what I wanted this website to be about.

Hope
Education
Information
Awareness
Understanding

A lot of the information in this blog would not be possible because it would not be available, without all the work CASANA has done. I used to think CASANA was this huge non-profit. It’s not. They work tirelessly beyond their 40 hour work week and are absolutely passionate about their mission.

When many people think of charities, they immediately think of the big ones. I mean, I did too. March of Dimes, St. Jude’s, The Komen Foundation, etc etc. I’m not here to discourage you from donating to these worthy causes, but I am here to ask you to also donate to the smaller ones too. Helping kids literally find their voice is an incredible and life changing gift. The reality is, some kids with apraxia will NEVER develop intelligible speech, and this is even more true if they don’t have access to appropriate therapy…..research based therapy that is only now getting done because of CASANA’s efforts.

Let’s face it. It’s hard to get people to care about a rare disorder, much less donate to it or fund research toward it.

My daughter is where she is today because of CASANA. Seriously. If you are my client, or if you have ever called or emailed me and thanked me for taking the time to talk to you, thank CASANA. I’m simply paying forward the kindness and absolute selflessness of the foundation, because that same time and attention was given to me from them as well…..for FREE.

Isn’t that worth $5.00? Just $5.00. That’s a latte. That’s a happy hour drink.

If you find any worth in this blog at all, a $5.00 donation to CASANA would seriously mean the absolute world to me.

Here’s the link and thank you as always for following along.

http://casana.apraxia-kids.org/give

Laura

Here’s a video of me speaking it.
https://www.facebook.com/ApraxiaKIDS/videos/10154284866444107/

November 29, 2016
All it takes is a spark, to light a match, to ignite a fire.

Once upon a time, there was an 18 year old girl who received a full ride scholarship to her local metro university. She took public transportation to get there since she couldn’t afford parking, and simultaneously worked 30 hours while going to school full time. Each day she walked onto the train, she wasn’t sure she would actually receive her bachelor’s degree, but she decided she would take it day by day, one step at a time, and see where life led.

One day, 4 1/2 years later, she boarded the same train with a cap and gown in hand riding to the downtown convention center. This center, the location of her graduation from Metro State University for a Bachelor of Arts degree in Speech Communications.

She could hardly believe it. Walking across the stage, surreal. She had accomplished something she was never sure she would achieve, and it felt awesome. This was the end of her academic career to be sure. Though her emphasis was in disorders and she had taken the coursework to be certified as a Speech/Language Pathology Assistant, she would use her umbrella “Speech Communications” degree to now move up in the car dealership in which she was working to become the customer relations manager.

Insert recession. The car dealership was turned upside down. Future plan….shattered.

Cue phone call from local school district inquiring about an interview as she was one of the few to complete the SLPA certification and they would like to interview her for a new position.

Complete interview and accept new position.

Introduce Deborah Comfort and Roberta Fehling. Two seasoned SLP’s. Pioneers. Feminists. Glass ceiling breakers. I was to work under them. They both would laugh at this description, but I can tell you I was in awe of them. I didn’t even think I would complete my bachelor degree and I’m a millennial. These were two baby boomers who had not only completed their Bachelor Degrees but had Masters Degrees.

The Spark

I was inspired by them. Their accomplishments ignited a spark in ME. A spark, I wasn’t yet willing or ready to realize. I tried to push it down and blow it out. Graduate school wasn’t meant for people like me. I grew up in a humble and modest home, with a common phrase of my dad’s being “poor people have poor ways” and I can tell you, graduate school is NOT one of them.

Long story short, they both believed in me. They both urged me to continue my education, but there was no money for grad school and women like them wouldn’t understand that “poor people have poor ways.”

Deborah decided to push harder. I arrived to work one day with her personal recommendation letter along with applications and GRE dates to get into graduate school. I remember scanning the paperwork and then scanning her face. She really believed in me that much, and just to be clear, Deborah was TOUGH. I knew she didn’t do this to just anyone. Why did she believe in me, I wondered. Could I really be like her and have a professional degree and job?

The flame.

I applied to one distant learning school so I would still be able to work and earn an income. It’s hard to get into graduate school for speech, and most applicants apply to many schools. Oh well, if I didn’t make it, it wasn’t meant to be, I reasoned.

Well, here I am, so I guess you know by now I made it. I completed it. However, I never attended the graduation ceremony……. and I regret that.

This past year, the American Speech/Language Hearing Association (ASHA) which is the governing body that certifies SLP’s, gave me an award for media outreach champion for my encounter and subsequent press coverage of Ronda Rousey and Childhood Apraxia of Speech. I was to be recognized at the annual ASHA conference in November. I wanted to go sooooo bad, but finances aren’t great. Therapy, and doctor copays for a child with global apraxia are pretty crippling. There were other personal circumstances as well that made it seem out of reach.

I kept thinking about how I regretted missing my Master’s degree graduation. It felt silly, but I didn’t want to regret another thing. Have you ever heard of this by Paul Coelho?

I believe it. Oh my goodness do I believe it. Problem is, I have to be willing to listen to the Universe.

Case in point? My husband’s incredibly giving extended family from out of state offered to pool their money and pay for it knowing we were kinda strapped for cash in this particular time of our lives. I rejected it. I felt it was charity and if I really wanted to go I could charge the entire thing on a credit card. They offered one last offer, and I STILL declined it.

I was talking to someone about it, and she challenged me on this. She urged me to accept the offer with grace, knowing I would make the same offer to someone else if I were in the position to do so.

Yes, of course I would, but I don’t know. It still felt silly. Accept money from people so I could go receive an award? It seemed self-serving and somewhat selfish. I can’t say it didn’t poke at me though.

A good friend and fellow apraxia mom Linda Power, offered to go and pay for the hotel. She had lived in Philly for a time, knew her way around, and was excited to go back. In this way, I would have a companion, and would only have to pay for the price of my plane ticket and ASHA registration.

Hmm….that offer was tempting. Plus, I don’t believe in coincidences. What a coincidence Linda lived in Philly for four years and she’s a close friend of mine and would like a quick girl getaway. Hmmm…November happens to be my birthday month. I could ask everyone to just give me money instead of presents to pay for my plane ticket.

I asked my mom if that was rude. She didn’t think so, so there we were! Philadelphia, Pennsylvania!

SUCH an amazing time!

The fire

I attended the ASHA convention last year, and I never thought to attend the award ceremony, which is ironic, because it’s the ONLY reason I went this year and that’s only because I was part of it.

I left soooooo inspired. I heard story after story of SLP’s in the field and their lifetime accomplishments. The stories were personalized and part of a video montage. Each story was unique and touching. I had tears and Linda had tears. I couldn’t believe this girl from Colorado who never truly believed she would finish college was sitting in a room with these esteemed people. If you ever attend ASHA, I highly recommend going to the award ceremony. It will make you proud to be in this field.

Also, it made me want to do even better. It made me want to aim even higher. More importantly, seeing the stories of these ordinary people who did extraordinary things, made we want to be more like them.

I don’t know what the future holds. I guess I’ll just do what I have always done, starting from that highschool graduate who stepped foot on public transportation to go to college. I’ll keep putting one foot in front of the other, day after day, because if I do that, I don’t know where it will take me but it takes me further than I am now. It take me further AND my sweet girl Ashlynn. Kids learn through example, or I learn from her. It seems like a mutual enterprise in this house.

That’s what she does though. She wakes up every day putting one foot in front of the other, and for her, even THAT simple act isn’t easy….yet she does it. So again, I have to ask myself,

What’s my excuse?

November 28, 2016
Feels like we’re falling down the hill again…..

I’ve been sad. Really sad. What’s the point in sugar coating it. It’s interesting, because I didn’t really start blogging until after we were really seeing progress in Ashlynn’s speech. I was able to be upbeat and positive in most of my posts. Sure there were some sad ones, or some angry ones, or some worried ones, but for the most part, I was feeling and had been until recently, pretty optimistic.

I can assure you though, I had very, very, VERY dark and sad days. Days I felt the worry would consume me. Days I felt the guilt and the weight would be too heavy and I would have to admit I didn’t do enough. I didn’t help her enough, and then I would be upset about this potential future outcome and obsess over what I could do more to help her. It’s a vicious cycle I tell you.

Ashlynn has now overcome my greatest fear. She can speak. She will be an intelligible speaker and she will be a verbal communicator. She will probably be slower. She will probably have continued word finding issues, but she will speak. For so long when she wasn’t speaking, I would imagine a hill. At the top the hill, was the trophy, which was intelligible, verbal, communication. As she failed to gain speech, I felt like each day had us slipping further down the hill. I was desperate and worried. How would we ever catch up? At least if we were climbing the hill, I have hope. However, it felt we were grasping yet slipping, and then stumbling even further back….and that feeling friends, is probably one of the worst feelings you can feel as a parent.

I haven’t faced “the hill” in awhile. I mean I have, but at least not in a negative way. We have been steadily climbing the hill. We have been getting closer and closer to the top. In fact, in regard to speech, we reached the top. Language is still an issue, but we are closing in. I see the prize.

Then came school…more specifically, reading. Writing. I found us on a new hill, and on this hill, we are very, very far down. Through Kinder, though I felt we weren’t necessarily closing the gap, it also didn’t feel like we were tumbling backwards either.

Enter 1st grade. Commence tumbling. Commence somersaulting. Down. Down. Down we went. The pace of the classroom curriculum is VERY fast. Too fast. We need about 1000x more repetitions than the typical peer, and honestly, there just isn’t that many hours in a day. I have had to face some very, VERY uncomfortable, okay painful truths, with the main one being this:

Ashlynn is going to have to live with some degree of disability for her entire life.

Call me delusional, but I really thought I could fix this. I really thought I could expert in this and get her all the help…and the RIGHT help she needed and we would overcome this, and by overcome, I mean soon. Like, really soon.

It has been very, very, very painful to realize this isn’t going to happen on my timetable.

My husband has told me before he feels he has a better understanding of Ashlynn’s reality than me. I would scoff. Impossible. He doesn’t know anything. (love you babe). I’m the expert in this. I am NOT in denial. I know the problems and we’re going to attack and beat them.

Well, I think this year has been revealing to me what my husband knew all along. I have been in denial.

I should have known. I mean, afterall, I’m the mom who when filling out a disability state park pass to get a discounted rate, actually felt guilty about it telling myself that even though Ashlynn will grow out of it, if the state approved it I wasn’t cheating.

Hah! I actually felt like I was cheating when filling out a state disability pass and I didn’t think I was in denial?

Can I shake my head anymore?? It’s an approved disability because Ashlynn HAS a disability.

UGH

Do I need to write that in black and white to sink in? It should be obvious by now. I can’t fix this. No matter how many continuing education credits or certifications I get, I can’t fix this. A wise woman who has walked this road before me, had a “hard” conversation with me recently (which I appreciated). However, it went something to the effect of how she wasn’t sure I was truly accepting Ashlynn for who she is, and if I don’t, how that could truly be to her detriment.

Deep breath. Breathe in…..breathe out.

Everything I do is for her benefit. Could I truly be behaving in a manner that was to her detriment?

I have realized that I have. I need to realize there is another hill we are yet again tumbling down, and after we reach the top, there will be yet another hill quite possibly that we will be facing, and at first falling backward on.

As I type that though, I think of life in general. My life without a disability. The hill metaphor is still relevant. Life is not a ride on smooth waters. Life always throws a wave, a dip, or a hill in the way, regardless. Though I would trade places with Ashlynn in a second, perhaps she is learning early what some adults may spend their entire life trying to learn.

A life worth living is about struggles, because without struggles you could never feel triumph.
A life worth living is about sadness, because without sadness, you could never truly feel happiness.
A life worth living is about defeat, because without defeat, you could never truly feel success.

A young man with apraxia in the UK, Mikey from Mikey’s Wish, reminded me recently that learning issues Ashlynn will have to tackle herself, but the greatest gift I can give her is just my support.

It doesn’t seem like enough, but I don’t think I can “fix” her anymore. I can though, hold her hand and squeeze it when she’s sad or when it’s hard. I can’t take away her disability, but I will walk through every fire with her to overcome it.

I still feel like we are tumbling down another hill, and though I can’t promise her I can carry her to the top, I can at least promise I will hold her hand and die trying to get there

.

November 21, 2016
The decline of the therapeutic relationship and why you don’t have to stand for it.

I’ve noticed something since I’ve had my daughter in therapy. Therapy offices that are small, with only a couple therapists and an actively involved owner, yield happy clients. Conversely, therapy offices only interested in expanding their brand, that staff numerous therapists and have a relatively un-involved owner, have more unhappy clients.

I used to work at a place this happened actually. The owner was fantastic. Smart, personable and caring, her clients improved, her families were happy, and her reputation grew. Soon, she was staffing multiple therapists from two different disciplines and opened up a second location. She became stretched so thin, that she outlined a list of policies and procedures, and then delegated a supervisor and receptionist to enforcing them. The result? Common sense flies out the window. The parent/therapist relationship becomes strained. People leave. I know personally now why this happened.

Recently I was on the receiving end of this. I took my daughter to what was supposed to be a well reputed therapy place in Denver, Amaryllis Therapy Network in the Highlands. I wasn’t too pleased with the evaluation, because Ashlynn has been evaluated three times before with the very same test and this time she scored 20 points lower. 20?? I had to ask myself if that was really accurate and I had quite a long conversation with the therapist who said attention could have played a factor or this or that. Ok. Fine.

However, then she was transferred to a different OT for treatment. They initially wanted to have her see an assistant. I have no problems with assistants. I used to be an SLPA (which is an SLP assistant) and an assistant is more than capable of doing therapy. However, what they are not able to do, no let me correct that, what they are not allowed to do, is change a treatment plan when they see something isn’t working. They are required to consult with the supervising therapist who IS qualified to develop treatment plans before they change it, and that’s just assuming you have an assistant who is experienced enough to know it needs changing. Anyway, I needed someone who can change a treatment mid session if they see something is or isn’t working. My daughter is not a typical case. She’s involved and I don’t want to waste time. I’m not trying to sound rude, but it’s just the way it is. As a side note though, it does make we wonder how many parents reading this even know if their child is seeing an SLPA or a CODA. If they are, just know that you want to make sure a supervising therapist is really staying on top of things in regard to your child’s treatment approach…just sayin.

Anyway, they complied, and I was given a different OT. I wanted a conference call set up between the new OT, me, and Ashlynn’s school OT who is also my colleague, a therapist I trust, and has been with Ashlynn since preschool. When she called, it was clear she had not thoroughly read Ashlynn’s report and then mentioned how Ashlynn had done a “group” therapy.

I’m sorry what? Group therapy? Ashlynn can get group therapy in school. I’m paying for private therapy. I need INTENSE private therapy. She quickly reassured me it was still 1:1 kid to therapist just participating in a group activity. Ok…maybe….but that’s not what I was paying for which even furthered my resolve that we needed a group conference call. I asked if she would email me and she agreed to set up a time. I NEVER received an email.

I’m reasonable. Ok. Maybe she entered my email address wrong? I call the next week before another session has come and gone and tell the receptionist I never received an email, would she email me again. She check the email address on file. It’s correct. Hmm. Okay. She’ll send another one. Perfect, thanks.

ANOTHER week goes by. NO email. My husband is the one that takes Ashlynn so I can’t just bring it up. I’m pretty ticked about this to be honest, but it can still be dealt with…worked through. Probably an honest mistake. However, I’m going out of town and I don’t think I can make the carpool arrangements work to get Ashlynn there this week.

Now, yes. I know I signed 48 HOUR cancellation policy paper. I actually remember signing it because it struck me as outrageous. Who has a 48 hour cancellation policy? Oh well. There are people who do chronically abuse the system, and cancellation policies are in place to protect and respect the therapist’s time. I get that….not only because I just get that…but because I AM A THERAPIST WHO DOES THIS EXACT SAME THING AS A JOB.

Dang! Why is that in caps you ask? Well, it’s because even when therapists, or doctors, or people in a field where they are to care about people have a cancellation policy, it’s usually only enforced to the chronic problem clients. Any person with a heart and common sense, understands that things come up. If someone is abusing the system, then yes. A cancellation policy should be enforced. I was NOT abusing the system. I called 30 hours in advance, choosing to wait until the morning instead of the hour they closed.

This was my first time cancelling, we aren’t late, and my husband probably spends close to 3 hours round trip getting her down there through rush hour traffic and back home. Not to mention the financial hardships families are already going through. You would think someone who actually has a heart and interest in caring about children would have been understanding. I know I am! I don’t even have my clients sign a cancellation fee policy, and if I did…I would give them chances. Unbelievable and SO sad. It’s not right we go through this when we are already bled dry from the cost of therapy. So now, I have to find a NEW place and begin the process again.

Oh, and one more thing. The email situation? The supervisor said it was documented she emailed me twice. “Maybe I didn’t get it due to spam filters?” I went along with it. Afterall, I hadn’t yet checked spam, even though it’s ironic that I DO get all of THEIR spam email. Well, low and behold I DID check, and by check I mean SCOUR my spam email and there was nothing. NOTHING. NO email from her…so now on top of it I can add lying.

Anyway, I digress. I have to find a new place and begin the process again.

Oh…but I WILL begin it again, because I know there are places and therapists who do not feel the need to run their therapy office like a corporation and treat people, actual human beings, as only dollar signs. I know, because I’m one of those people, and I know many, many other good therapists who are ALSO one of those people.

My message to any parent reading, is if you feel like your child and your appointments are nothing but a dollar sign, then you need to leave. That is so unacceptable.

My message to any professional reading this, is you need to know and understand we are counting on you! We are putting our faith and literally our children’s success and outcomes in your hands. Meet us halfway. We are your paycheck, but we are also human. If you are a person running a therapy office like a corporation, take heed. YOU may be an honest and awesome therapist, but don’t get caught in some black and white policy and procedures BS. These are humans, humans with disabilities no less, that you are dealing with. Have some freaking compassion beyond your rules and regulations.

Oh, and for anyone considering Amaryllis Therapy Network in Denver, scratch them off your list and move on. Developmental Fx is where I’m headed, and unlike Amaryllis, I know many families who have been happy with the outcome.

November 15, 2016
Don’t just teach the speech. The importance of co-articulation and prosody in the treatment of CAS
Co-articulation. Prosody.

Those are two words you might have seen when researching apraxia. If you are treating a kid with apraxia or you have a child with apraxia and are not familiar with these terms, you NEED to familiarize yourself with them.

To have a diagnosis of apraxia, you need three main criteria:
1. Inconsistent productions with sounds
2. Difficulty with co-articulatory transitions
3. Errors with prosody (stress, intonation, pitch, rate, volume)
Recently, I’ve noticed (maybe hoped) that information is getting out there, and SLP’s who are treating apraxia are at least using principles of motor learning and focusing on movement gestures (sound sequences) and NOT sounds or sound patterns. This is awesome because this step and this step alone will help take a child from nonverbal to verbal. Common approaches such as Kaufman and PROMPT teach SLP’s to do this step, and do it well. I can speak as an authority on this matter because I made it a point now to be trained in both.

Here’s the problem. I’m not seeing a lot of emphasis on co-articulatory transitions or prosody.

“It’s okay, I just want my kid to talk!” you might say, and YES. This is the most important thing. HOWEVER, our kids’ fate doesn’t have to be one of disordered prosody and odd sounding speech as they get older. Depending on the severity it may be, but it doesn’t HAVE to be, and that is where we come in.

I would like to see SLP’s who have a good understanding of motor planning now also focus on helping the child “sound” more natural in their speech.

Here’s the thing about apraxia. When kids with apraxia learn a certain motor plan, they learn it well and they say it the same way consistently. This is a good thing in terms of learning the appropriate sound sequences, but if we don’t also consider prosody and co-articulation, we are teaching them to sound robotic, staccato, or monotone; and they WILL learn this motor plan for these features as well, and not necessarily grow out of it.

Okay, so let’s focus on co-articulation and prosody. How do we incorporate it?

Prosody

Prosody is actually one of my favorite activities to incorporate in therapy. You can choose to do it in both structured and unstructured tasks, which makes it dynamic and versatile in terms of weaving it into therapy. The most obvious way is to make sure, even when you are doing the very direct and structured work of making sure a child is articulating every sound in a word, you do so with varying your intonation. For example, let’s take the word “daddy.” This was my daughter’s favorite word. Ashlynn would frequently omit the medial /d/ and say “da-eee.” When we corrected her, we would make a point of stressing the medial /d/ sound, effectively causing a staccato type prosody. Think about it. We would make her say “daDEE.” We don’t say “daDee” in everyday speech. We say “DAdee.” If we don’t go back and try and get this natural stress pattern along with the correct articulation, we are teaching the child to say “daDEE” which sounds off. This is something we should be conscious of starting from the very early beginning of therapy.

Focused and direct work with prosody should also be targeted. Not to be self-serving, but I created a game I sell on teachers pay teachers just because I wanted something fun to specifically target this area. I called it, “say it like a costume character” and I have various characters and the child has to say the target word the way the “costume character”would say it. This provides not only practice for articulatory accuracy, but also variation at the supra segmental level. The kids LOVE it.

Other activities I’ve done include singing songs that vary the volume. Recently, I just had a child sing BINGO with me, and we shouted the first letter and then had to be quiet the remaining letters. Obviously, this child is more verbal and in a later stage of apraxia resolution; however, even in the early stages, the SLP could request a child say a target word loud vs soft.

As with everything else, I love using books. A recent one I read was “Going on a Bear Hunt” and the child had to say the repetitive phrase “I’M not scaaared” each time it came up in the book varying the stress and rate. Right now I’m moving into the “Old Lady” books. If you haven’t seen them, they seem to have one for every holiday, event, or season and you can have the child “sing” certain parts with you.

Co-articulation

Kids with apraxia already have an extremely difficult time sequencing longer syllables or putting words together. You may notice, that when kids with apraxia do start combining words, they articulate every single sound. That’s what we want right?

Yes and no.

Let’s take the the phrase “come here.” A typical English speaker will say “com-ear” when beckoning someone. Say it out loud as though you are calling someone. I doubt you articulated the /h/ in “here.” If you did, you would end up having a slower rate and maybe sounding more robotic. Let’s do another one. Let’s take the phrase, “Put it on.” How many times do we say that to our kids? Now say it out loud. Did you articulate every single sound, or did it sound something like, “pudi-on.” My bet is on the latter.

Though our kids do need to know how to articulate all sounds correctly in various syllable shapes, they ALSO need practice sounding more natural and it’s up to us, SLP’s and parents, to help them.
November 3, 2016