Category: #knockoutapraxia

  • Tips for carryover in Childhood Apraxia of Speech: Part 2 of 2

    Tips for carryover in Childhood Apraxia of Speech: Part 2 of 2

    We all know Childhood Apraxia of Speech is rare!  The odds then of having a mother who is an SLP?  Probably substantially rarer right?  When I first started on this journey, I knew of none.  Now I know at least 30!  We have a unique perspective for sure, and I wanted to team up with two other moms to tell you what we do in our own homes with our own children with CAS.  This is Part 2 of a 2 part series.  Our first one can be found here:

    Tips for Carryover in the Verbal Child with CAS: Part 1 of 2

    So, if you haven’t read that already, please do!  If you have, let’s continue!

    Powerful Motivators

    Sound familiar?  This was first and foremost in my last post on home strategies too.  Speech is hard!  Our kids have to not only think about what they want to say but how to say it, and that’s where we come in to help.  I can remember when Ashlynn started saying the final /k/ in the word “book” instead of substituting a /t/.  She loves books and even still looks forward to me reading a book to her before bed.  It’s a powerful motivator, and after I knew she could say “book” and not “boot,” I had her say it correctly before I read her the book.

    A huge motivator for my son too is really as simple as just saying “wow, I loved how you said your lifty sound (our reminder word for the L sound) in the middle of that word!” he gets so excited when I notice the work he puts into speaking. His face just lights up and it is so cute.  I try to do this as much as I can so that he can feel noticed for doing right instead of just maybe feeling corrected all the time.

    Motivation is an essential element for making progress and one to always keep in mind for home practice as well as during therapy with his regular SLP.  In fact, this is one of the top characteristics that I look for in an SLP for my son. He is a pretty easy-going, compliant client for any SLP, so he’ll do a lot of “work” in a therapy session without a lot of reinforcement.  While this may sound like a wonderful “problem” to have, I know that he needs motivation and reinforcement to keep his forward momentum going in his speech therapy, since we all know this is a marathon and not a sprint for kids with CAS.  We actually switched SLPs at one point because he wasn’t having fun and staying motivated during his therapy sessions with a former SLP.  I need an SLP who recognizes this critical component of therapy and want to stress its importance to all parents of kids with CAS.  For my little guy, the best reinforcement is when I get down on his level and play with him.  Having fun and playing games of his choosing is a way to keep our relationship strong, which carries over into the rest of our daily activities/practice opportunities.

    I completely agree! Therapy with an SLP needs to be meaningful, motivating, functional, and encouraging in order to work. It’s the same at home. Use the moments when your child is engaged with something they love and use that as an opportunity to get the best results.

    Praise!  Lots and Lots of Praise!

    I currently have a new young client, and she thrives on getting stickers.  When we first started, she would get a sticker for even just looking at my mouth when I asked!  As I was talking to her mom one day, her mom said something so simple but profound, “what person doesn’t like praise?”  She was right!  Aren’t you motivated to work harder at your job or help your spouse more when you get praise and you feel appreciated?  Make sure to acknowledge your child’s hard work!

    EVERYONE likes to feel successful. Children are no different. Praise becomes motivation as well so these two things really go hand in hand in my opinion. Once you start focusing on praising and positivity you will see willingness to participate increase. There was a time when I was so frustrated at my son’s eating, or lack thereof, that at the end of the day I realized that all I had been doing all day was talking negatively to him about not eating. It made the situation worse. In the morning, I started making sure I found things that he was good at in regards to eating and said things like “You are really good at using your tongue to taste food. You are my expert taste tester” I can’t say it helped him eat anymore, but it certainly made both of us in a better mood and he was willing to “taste test” more and smile at the thought of trying food instead of crying. It is no different with speech. Sometimes you just have to find the words that work best for your child. We’ve all said this a million times…it’s a marathon, not a sprint. It takes time to find what works best for you and your child. It is also important to remember that what works best for you and your child may not work best for your spouse and your child. Encourage your spouse, partner, family, whoever to find something that works for them, but don’t make them do everything the way you do it (oh and don’t forget praise for them either).We all have such different relationships and communication styles with our children.

    You two have already covered most of this topic, though I’d like to add the reminder to remember how hard our kids are working every single day, every single time they open their mouths to speak.  We witness it everyday and know how hard they are working.  We must be our children’s biggest cheerleaders.  Smile, laugh, and remember to have fun.  We’re in this for the long haul and want to enjoy our journey together as much as possible.  

    Know your cues!

    Since we are SLP’s, we already know tips and tricks to cueing speech sounds.  However, parents might not.  That’s why it’s so important parents are able to see therapy in action, whether that be in the room, or videotaped.  Most kids with apraxia respond well to cues.  Cues can be touch cues, visual cues, verbal cues, or even sign cues.  If you don’t know the cues your SLP is using, you’re probably going to be less successful at helping your child carryover his/her targets at home.  

    If the child cannot say the sound or is getting frustrated, it’s not a good target.

    If you have your powerful motivators, are using your cues, and your child is still not producing the word correctly, move on.  Ask your SLP for different targets.  Therapy for apraxia is hard enough.  Home practice should be easy, not miserable.

    If this was a post on facebook, I would try to like this comment a thousand times! Remember that old saying “pick your battles”? It applies to home practice too. They need to stay confident in order to want to keep working because let’s face it, they have to work really hard. If they stop wanting to work because something is physically unachievable at that time, you might as well throw in the towel. I sit in on every session and watch very closely to what they are doing. I make sure I am using the same verbal and visual cues that our SLP uses. This is extremely important for me in order to stay consistent, but it is also important to see how he reacts to cues in therapy so I can use that information to troubleshoot at home. Being in the room or behind a two way mirror also helps me to be able to ask questions based on what I have seen and tried at home and what I see in therapy. If something isn’t working at home, I tell our SLP. Sometimes I have suggestions on what could help based on his personality and sometimes we really have to work together to figure it out. It is a collaboration for sure.

    When there is a word or phrase that you know your child will have difficulty with, try to set them up for success to produce it correctly by giving the cues they need to say it accurately – it may be visual or verbal cues or a direct model.  If I can intercept an incorrect production, I try to do so.  The more he practices it correctly, the better off for everyone.  This applies best to emerging skills or those currently being targeted in therapy.  When your child reaches a higher level of proficiency for a skill, I will often let him try it on his own and only cue if there is an error. 

    It’s impossible to correct/cue for every speech and language error every time it happens during your daily interactions with your child.  I don’t want to present the idea that I catch and correct every error that my son produces every day because I’m an SLP.  That’s not realistic or accurate.  Early on in his therapy, and even now, when we have so many goals that need addressed, I have often felt overwhelmed when trying to work on them.  I feel the need to work on everything all the time.  It’s been helpful to me to choose one goal or one goal area to target at a time.  Right now, we’re working most on language goals and using helping verbs, prepositions, and articles (the “little” words in sentences), and those are what I cue for 75% of the time.  The other 25% are mostly speech errors on sounds that he can produce (consonant blends) or the occasional newer speech target (long vowels).  Soon, I’ll probably switch my focus back to cueing/working on speech goals (especially those vowels!) a majority of the time, and put the language goals on the “back burner.”

    It’s a marathon, not a sprint!  

    There’s that phrase again! Once our kids have finally passed the hurdle from being non-verbal to verbal, many times they rely on practiced or known “motor plans” to communicate…..which is AWESOME!  Our kids go so long not being able to say a single word despite having what they want to say in their head, I can only imagine how nice it must be to go on auto-pilot every once in awhile.  Unfortunately, sometimes their motor plans contain poor grammar.  

    The most common one I see is the child referring to themselves in third person, instead of saying “I.” Ashlynn definitely did this!  It makes sense though right?  We always teach them their name, and then when they finally get it, we are so proud.  Also, it has all the elements I just talked about right?  It’s a powerful motivator to say your name, they get lots of praise and reinforcement when they say their name, and parents probably practice this target throughout their day (distributed practice). I have many, many blog posts where I outline her sayings such as: Ashlynn happy, Ashlynn play boats, Ashlynn want muffin etc.  It took months, MONTHS, and that was with me correcting her EVERY TIME to break that and say “I” instead.  That is apraxia.  You can then only imagine how much longer that would have taken without that home element!

    Yes, once G moved into using short 3-4 phrases, this was a big milestone and so exciting!  However, those phrases were often learned as big chunks.  For example, he learned the phrase, “I like it!” but did not actually have functional use of the pronouns “I” and “it.”  He used the phrase as one unit and didn’t grasp independent use of those pronouns in other contexts or with other verbs.  However, once he did start using it, I made sure to model their use in other situations to get him to practice similar sentence structures.  I think of it as him having the motor plan for that sentence structure (subject-verb-object) and then we have to work on it growing and maturing to be strong enough to support more combinations of that sentence structure.  This “auto-pilot” scenario still occurs right now too, especially with new-to-him phrases.  For example, when watching the weather forecast one day, they predicted snow showers on Friday.  G said a new sentence, “Snow on Friday!” which was fantastic to hear!  However, now any other time we watch the weather report and talk about the rain or snow forecasted, he defaults back to saying, “Snow on Friday!” whether it’s correct or not.  Now that I know this about him, I try to intercept that automated response and repeat the correct words (“Rain on Monday!”) before he has a chance to say the inaccurate one.

    Don’t forget about Prosody!

    Prosody is sometimes referred to as the “melody” of speech.  It can include things like inflections, syllable stress, and volume.  To have an apraxia dx, children have to have difficulty with this.  When we are trying to get them to say a word correctly, we can exacerbate disordered prosody, which we don’t want to do.  Always be mindful of using varying inflections, and stressing the correct syllable when speaking to your child or having them say a word.

    Ashlynn had a habit of omitting medial consonants in CVCV words.  For example, daddy was da–ee and doggy was dah-eee.  When I would try to correct her, my first inclination is to of course tell her to say daDEE.  That is the wrong stress though for the word.  We don’t say daDDY.  We say DAddy.  Sometimes we can’t help but stress the wrong syllable, especially in the teaching phase; but it’s good to be mindful we want to move them to the correct stress as quickly as possible.

    I feel prosody is often an overlooked, but important aspect to remember with CAS. If you question if you are encouraging or modeling something correctly, try saying it in a sentence naturally to your spouse and see what kind of inflection you naturally put on the syllables in that word, then you can model it better for your child if you understand how it sounds in a natural way. I tend to say a word a little sing-songy when I’m trying to model good prosody in a word or sentence that is hard for him. For some reason, it really works for him by emphasizing the left out stress in the syllable without taking away the naturalness of it. He can hear it and model it a bit better when I do it like this, but if you have concerns on how to address it, ask your speech therapist. It can feel tricky at times. Also, my son would say things too high pitched and he still does occasionally, but we were able to come up with a system that worked for him. We color coded his high and low pitches so if he was getting too high, I would say “I heard your purple voice, let’s try saying that with your green voice instead of your purple voice.” Colors clicked with my son, but you may find using animals or something more meaningful as a voice reference is easier for your child.

    This is one of the trickiest aspects of CAS for me.  I was guilty of using unnatural prosody and stress A LOT with G, especially early on.  I wanted him to speak so badly and I was doing everything I possibly could to help.  Now that I know better, I do better. When working on a specific target, I do sometimes still stress sounds or syllables to help draw G’s attention to that sound and to help him produce it.  However, as soon as he produces the word or phrase accurately, I immediately return to normal prosody and try to elicit that immediately after.  We also use a sing-songy voice sometimes to help bridge the gap between an over-stressed isolated production and one with natural prosody.  I would say that I strategically use extra stress for omitted sounds, syllables, or words, but I try to use normal prosody first before doing this.  

    Listen and give them time!

    One of the biggest keys to success in our home is to listen. Ian needs extra time to speak, he needs to feel heard and this helps his confidence to continue to try even if he doesn’t always do it perfectly. Although it sometimes takes a painfully long time we let him finish what he is trying to say, and pause a moment before we answer, just in case he wants to fix something he missed on his own. I try to give opportunities for him to figure out and fix his mistakes on his own, and I’m not afraid to tell him if I didn’t understand something. We have always had a gesture or a word associated with a sound thanks to guidance from CAS specialists we have worked with, so if Ian forgets a sound in a word I try to first just do the gesture of the sound he missed or I do the word he may have left off of a sentence in sign language to help him remember without telling him first. Everything he has learned (from signs/visual cues to help with speech, to sounds, to words, to the prosody within those words and sentences) is still modeled heavily in our house whenever he doesn’t say it like I know he can. This is basically our everyday distributed practice. I do try to create moments to help him work on combining his new sounds with everyday speech, but for the most part I just go with the flow and most importantly I don’t give up. I guess I’m still afraid he will lose something and we might not see it again for months, or that he will get used to saying something that he already can say correctly the wrong way and have to start all over again, but whatever it is we never stop using everyday situations as practice. I’ve had to learn the hard way that thinking he has something mastered doesn’t mean I can give up correcting it. There have been times when his ability to speak correctly and efficiently waxes and wanes. I’m hoping it changes where one day he won’t need my help at all, but for now I can never let myself get lazy with helping him progress to the best speaker he can be and that’s why we use everyday moments to practice speech and not just ten minutes at a time.

    I couldn’t agree with this more!  Ashlynn needs a TON of processing time.  As much as we work on speech, I also make sure to step back and just wait for her to finish a sentence or a thought.  She also has crippling word finding difficulties and though it’s tempting to want to fill in the blank or give her a word, I wait for her to try and come up with it herself.  If she can’t, I also use sign cues like Nicole, or I give her the first sound and see if she can access it on her own.  

    While it’s true that all kids need time to accomplish something new on their own in order to feel independence and pride, this is especially poignant for our kids with CAS.  They often need extra time to formulate their replies and get their mouth to cooperate with what their brain wants to say.  I try to give G this extra time at home, in his safest environment, so he can build his confidence and skills to use his speech in the more hectic “real” world outside our home.  When listening to G, I too let him know when I do not understand what he’s saying and give him as many opportunities as possible to repair that communication breakdown (e.g. repeat, re-phrase, gestures, answer questions).  

    When thinking about G and his speech therapy goals, it’s so important for me to remember to “give them time.”  Some days, I feel discouraged about G’s speech and language skills and that I should be able to do more for him.  When this happens, I try to think about what he can do now compared with 6, 9, or 12 months ago.  Of course, those gains don’t come without a whole lot of work from him and us, but the progress is there, and he will keep making it, because we won’t give up.  

    I can’t thank Nicole and Kimberly enough for joining me on this journey and for guest blogging today.  When I had this vision for this blog post, it could not have been nearly as in depth or insightful as it is without their input!  Our children continue to make progress.  YOUR child will continue to make progress with the right elements and correct therapy approach.  

    mommy-2Band-2BashlynnLaura Smith M.A. CCC-SLP is a speech/language pathologist in the Denver Metro Area specializing in Childhood Apraxia of Speech.  CASANA recognized for advanced training and expertise in Childhood Apraxia of Speech, she splits her time between the public schools and the private sector.  She is dedicated to spreading CAS awareness.  Her passion is fueled by all of her clients, but especially her own daughter who was diagnosed with Childhood Apraxia of Speech.  For more information visit SLPMommyofApraxia.com
    12483712_10102672217441924_1074570947_nNicole Quaka M.A. CCC-SLP is a licensed speech and language pathologist in the Pittsburgh area who is currently a stay at home mom to her two boys. Her background is in adult swallowing and cognitive communication disorders related to TBI and degenerative neurological disorders. However, because of her eldest son’s diagnosis with CAS she has spent the last three years dedicated to continuing education on augmentative and alternative communication, childhood apraxia of speech, and related developmental disorders.
    12476212_10153908135074903_1729160114_nKimberly Peterman M.A. CCC-SLP is a speech language pathologist in the Columbus, Ohio area who is currently a stay-at-home mother to her two sweet, active sons.  She has experience with clients from preschool age through mature adults, and particularly enjoys working with clients in the areas of articulation, stuttering, hearing impairment, and language impairment.  Since her oldest son’s diagnosis of CAS one year ago, she has devoted all of her SLP continuing education, time, and resources to his ongoing speech therapy and is grateful to be able to do so.

     

  • Where we are at: apraxia, articulation, language

    Where we are at: apraxia, articulation, language

    It has been awhile since I posted directly about Ashlynn’s speech.  Once we all started to understand her, it didn’t seem as pressing anymore.  Her dyspraxic components (gross and fine motor skills) definitely started to take precedence.  However, she is still in speech for a reason, and that reason being percentile ranks well, well, well below average.

    Ashlynn is 6 years and 2 months.  She can say every single sound in the English language correctly, including an /r/, which is a victory for me!  If you’re an SLP you understand immediately; but if you’re not, you should know that an /r/ error is basically an entirely different monster that usually takes years to remediate.  Unfortunately, she also has a profound frontal lisp.  If you’re an SLP, again you understand immediately why I added unfortunately; but if you’re not, you should know that a lisp is also an entirely different monster that takes A LOT of time to remediate.

    Though I am paying for private therapy, a lisp is pretty low on the priority list.  She is understood in most contexts with varying communicative partners.  You might ask, “What is she in speech for then?”

    Oh baby, that is a loaded question.  We are called speech/LANGUAGE pathologists for a reason.  Where there is a speech delay (referring to sound production), there is frequently a language delay.  Language runs the gammit from receptive (what you understand), to expressive (what you say).  Expressive language includes but is not limited to: vocabulary, grammar, syntax, narrative language, and word finding.  Ashlynn has deficits in EVERY…SINGLE….ONE of those language areas.

    Her “speech” goals span the spectrum of just understanding complex directions and sentences, to actually producing sentences with a variety of nouns, verbs and adjectives.

    There is a physical therapist overseas who is marketing a therapy strategy that is supposed to be amazing for apraxia.  He doesn’t understand the uproar about a PT marketing therapy for a very specific and misunderstood speech disorder like apraxia.  May I direct your attention to my above statement about us being language therapists too.  He may have found some style that helps speech sound production, but is he the guy you want when your child has a low vocabulary?  Struggles with word finding?  Can’t get pronouns or tenses straight?

    Um yeah.  Probably not.  He won’t have a clue what to do, and an SLP will be automatically incorporating these elements into therapy.  Oh, but I digress.  That’s another topic!

    So for Ashlynn, she is working to her expand her vocabulary using more verbs and adjectives, but also to make sure she is using the correct pronouns, verb tenses, and temporal concepts (tomorrow, yesterday, last night etc).

    Word finding is a huge piece, but also vocabulary.  Vocabulary encompasses skills such as describing, defining, telling how two things are alike or different, categorizing, etc.   We are working on it though.

    Pronouns are getting better after correcting her for at least a year.  She knows the difference, but when she is speaking she messes them up. She is doing pretty good with subject/verb agreement and using present and regular past tense, but still needs to work on irregular past tense.

    Receptive language is also low.  I’m hoping we will see this improve as she is on her attention medication now and better able to focus.  She knows most of her positional concepts, but other ones like farthest, widest, etc are more difficult.  She knows the difference between all wh? questions (what, when, where, who, why), and can answer basic questions; but she is lost as they become more complex, particularly with a book that contains a lot of text.

    Oh and I forgot to mention phonemic awareness.  She is stuck at around 50% accurate for identifying rhymes and initial sounds.  Her SPED teacher is using both whole language and phonics approaches for her reading.  Edmark is a program that she uses and I have seen amazing progress with in regard to her other students, so I hope Ashlynn will be the same.

    Sometimes it’s a blessing a curse because I feel like I know too much.  I know her deficits, and I know if not remediated, what additional deficits they will cause.  I also hate that lisp, but seriously, priorities.  Everyone can understand her…..lisp or not, so that’s going to wait.

    Her next IEP will be this coming Spring.  I’m looking forward to all the growth she will make between now and then. We’ll keep on keeping on, and I’ll believe, like I always believe, that great things are waiting to happen.  When we look for negative things, we will find them, but the opposite is true too!  Here’s to 2016! Cheers!

    20160101_154202544_iOSAlways-believe-that-something-wonderful-is-about-to-happen

  • SLPMommyofApraxia Top Posts of 2015

    SLPMommyofApraxia Top Posts of 2015

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    Graphics by MyCuteGraphics

    This year was definitely a big year for me and for apraxia awareness!  I coordinated the Walk for Apraxia in Denver, I was honored to be published in the ASHA blog and on The Mighty twice; and of course as you all know, my story on Ronda Rousey having apraxia went viral and was featured in national publications and on Good Morning America! This lead to our popular facebook group Ronda Rousey: Knock out Apraxia, and numerous posts featuring our apraxia fighters attached to the hashtag #knockoutapraxia.  It has been quite a year!

    Thank you to all who follow along, everyone who helps raise awareness, and all who have reached out via email or phone and connected to me!

    Here are my most viewed posts of 2015!

    1.) Her Fight our Fight: The day we met Ronda Rousey. Read here

    2.) Strategies to promote speech and language in the pre-verbal, or minimally verbal child with apraxia.  Read here

    3.) What is Childhood Apraxia of Speech? Read here

    4.) Repetitive books that are great for speech and language. Read here

    5.) Why nature weighs more heavily than nurture. Read here

    6.) Prognosis is not just a funny word, there is nothing funny about it. Read here

    7.) Global Apraxia, you brought your A-Game, but my daughter’s game is better.  Read here

    8.) Interview with Reagan, a 17 year old with CAS. Read here

    9.) Feed the Snowman Articulation Game for high repetitions. Read here

    10.) Interview with Sharon Gretz, the Executive Director of CASANA (apraxia-kids.org) about what you should be seeing in therapy.  Read here

    In case you missed it

    These are some of my personal favorites and topics since I started blogging throughout the years

    1.) IEP on the other side of the table chronicled Ashynn’s first IEP meeting and how I experienced first hand how difficult they are on a parent.  Read here

    2.) Ashlynn Play Boats with Daddy details persistent language and dyspraxic issues, but also progress and success.  Read here

    3.) DTTC: Evidence based treatment in CAS is an interview with national expert Ruth Stockel from the Mayo Clinic on treatment using this method.  Read here

    4.) Wait…is she the….R word? Read here

    5.) Experience is the Key Architect of the Brain in CAS. Read here

    6.) If We Don’t Say We’re Scared, Does it Mean We Don’t Have Fears? Read here

    7.) Did I Cause her apraxia? Read here

    8.) Lessons of a tricycle. Read here

    9.) ABC song and Happy Birthday Jace.  Read here

    10.) What if We Don’t Prove Them Wrong? Read here

     

    Happy New Year Everyone!

  • “Thank you” sounds so empty.

    “Thank you” sounds so empty.

    When I worked in Denver schools early on in my speech therapy career, I became numb to the phrase, “Thank you so much.  Thank you for everything.” The parents were soooo grateful for my help, and I didn’t understand.  It was my job.

    “You don’t have to thank me,” I would reply.  “Is there anything else I can do?  Any other goals you would like to be written?”

    The response was always the same.  “No, no?  Just thank you.  Thank you so much.”

    Early on in Ashlynn’s special education career, no one really seemed to know her.  Every time I went to school for a meeting, I always saw more at home than what they would report at school.  That is disheartening to be honest.  I know I’m a professional in an educational world, but that doesn’t mean I’m an expert in education.  I’m an expert in speech and language development.  I wanted the “experts” in education to report on my child and I saw more at home than what they said they did at school.

    I have spent soooo many posts waiting for a teacher who would believe in her.  Waiting for “professionals” to see what I see.  Today, before Christmas break, Ashlynn came home with this:

    12359922_10206415884928527_6894661311511169506_n

    If you have followed me or my story, you know that Cody, Ashlynn’s dad, is a realist.  He might tear up at her IEP meetings, but overall, he’s pretty practical about our situation.  When I am distraught over test numbers and percentile ranks, he is the one to calmly remind me she always makes progress and never goes backward.

    Please direct your attention the above picture.  When I saw it, I had an internal cheer.  Okay, this is it!!  Finally!  The money we are dumping into Kindergarten Enrichment, OT, and Speech is paying off!!   Last year at this time she STILL couldn’t write her name after years of practice.

    I looked over and saw Cody choked up.  I paused and realized how huge this was.  I’m always looking at the next goal I never celebrate these moments.  I’m proud, I’m INCREDIBLY proud, and it hit me.  Ashlynn came home with something I didn’t know she could do.

    That has RARELY happened before, and it’s been happening more and more this year.

    There was a time I was sad at the thought it took a team of people,

    a TEAM of professionals

    to help Ashlynn do things typical kids do so naturally.  When we handed out the teacher Christmas gifts this year, I wanted to hug each person: the teacher, the SPED teacher, the para, the SLP, the OT, the PT, the psychologist, and THANK THEM.  Thank them for helping my child.  I remembered me a few years ago wondering why people were thanking me for doing my job…and that’s when it hit me.

    I get it now.

    Ashlynn’s TEAM this year is a dream team. Every…single….one……. believes in her.

    11870728_10205720221057365_1459854136336260829_n

    This is Ashlynn’s first day of school pic.  The adult in the front is her teachers aid, and the adult in the back is her school SLP.  From day one they were there for her.  For the record, they both consider this “just doing their job.”  For me though, I knew she was taken care of from the start.  Ronnie, her teachers assistant (T.A), has bought her a book for her birthday AND for Christmas; and if you don’t know what T.A.’s make, let me put it bluntly and tell you they make shit.

    When I have told Ronnie thank you for buying Ashlynn these gifts, she only smiles as though she had no other choice and says “Of course!! It was her BIRTHDAY!!”

    It is incredibly humbling to know her salary, and know that she STILL felt like she owed my child a present.  I wish I could buy her the world.  I feel helpless to prove to her how much that means to me.

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    Which brings me to my next picture.  Ashlynn’s SPED teacher is one of the best.  I really don’t even know where to start.  Teaching is her calling.  Her compassion, passion, and drive is so infectious, it spills into her children, her biological children that is. This is a picture of her youngest daughter “teaching” Ashlynn during a tornado drill. Her daughter wants to be a teacher, and judging from her current skills, is well on her way!  Colleen has high expectations.  Can I just cry right now?? Ms. Colleen has HIGH expectations from my daughter.

    I can’t tell you how many times I have told various teachers and therapists that Ashynn is capable.  She will rise to the occasion.  I also remember the countless “you poor thing” pity stares as though I were in denial.  That never deterred me from saying it though.

    True to form, I wrote a note at the beginning of the year to Colleen in Ashlynn’s back and forth book and I said, “Ashlynn will rise to the occasion.”

    Now that Ashlynn has Colleen, she is proving it.

    12043207_10205988783131249_8742667403925880824_nThis next picture is Ashlynn at the Walk for Apraxia of Speech. The other girl in the picture is the daughter of Ashlynn’s school OT.  I’m a writer, and I can’t even….I can’t even….express the words to describe what this meant.  Why on Earth the school OT took time our of her weekend to bring her children to Ashlynn’s walk is beyond me.  I have no other choice but to feel blessed and humbled.  Even better is what these women are teaching their daughters.

     

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    This last picture is Ashlynn’s Kindergarten teacher.  I’m so blessed to be in a district who values inclusion.  This is Ashlynn’s general education Kindergarten teacher. Ashlynn is in a very restrictive special education program, and sometimes kids in this program don’t feel as part of their general education peers as they should.  Ms. McDermott, her general education teacher, values and treasures Ashlynn as part of her class. She tracks Ashlynn’s progress and knows her skills just as well as Ashlynn’s SPED teacher. In addition, she strives to ensure the children LOVE school.  She is a gem and in short, teaching is her calling too.

     

    Though the words sound so empty, they are filled with deep emotion.  “Thank you.”  I’ll never take it for granted again.

     

     

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  • Interview with Reagan, a 17 year old with CAS

    Interview with Reagan, a 17 year old with CAS

    I’m so excited to introduce you all to Reagan!  She is a 17 year old girl with apraxia of speech.  She is positive and inspirational, active in social media groups giving parents and children words of hope and encouragement.  I wanted to interview her to get her perspective on having Childhood Apraxia of Speech and I’m willing to bet as a fellow worried parent, some of her answers may surprise you as they did me!  In the news story here: High school student gives voice to kids struggling with speech, Reagan’s mom says she was dx at 3, but didn’t speak a full sentence until 9.  The news clip also says Reagan was enrolled in speech therapy every day at the age of 3.  Watching this news clip made my jaw drop, especially now that I know Reagan a little bit better.

    Hi Reagan! I am so happy to have stumbled across your news story in our Ronda Rousey: #knockoutapraxia group! You are truly an inspiration, and really give a great perspective. 

    Read about her story here: High school student gives voice to kids struggling with speech

    1.) What do you remember about your early days in speech therapy?

     I don’t really remember my early days of therapy.

    2.) When did you know you had apraxia?

    I knew when I was like ten. I did a little presentation on apraxia in fourth or fifth grade because they thought I could be deaf. I told my class what it was.

    3.) How has apraxia affected your life, or does it?

    Apraxia has affected my life not in a lot of ways; but I know sometimes I need to repeat and slow down what I’ve said.

    4.) You often say you want to be a voice for kids who have apraxia.  Tell us what you mean by that?  

    Be a role model for the kids who have apraxia and tell them it will get easier.

    5.) What do you wish more people knew or understood about apraxia?

    I would like people to understand that we get everything they say but can’t get our words out all the time.

    6.) What is something you would like to say to all the kids out there with apraxia currently struggling to speak?

    It will get easier and easier but it will take some time.  I train myself to say new words that I have the same way for awhile.  I listen to myself and train my brain how to say it right.

    7.) What inspires you and what do you want to be when you grow up?

    Journalists, because they have good stories to tell but sometimes sad, and they find time to have fun on air. I want to be a journalist or a producer. I would love to be on tv or behind the scenes.

    Thank you so much Reagan!  It has been great getting to know you, and I am so impressed with your desire to continue apraxia awareness and help so many others! As proof, she made this poster for Ashlynn one day, just out of the kindness of her own heart.  

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    In a follow up post, look for my interview with Reagan’s mom!

     

    Reagan
    Reagan is 17 years old and is a senior in highschool. She’s aspiring to be a journalist.  Follow her on Twitter @ ApraxiaReaLynn 

     

  • What can we do next?  #givingtuesday

    What can we do next? #givingtuesday

    The #knockoutapraxia movement:

    I want to thank everyone who participated in the #knockoutapraxia hashtag campaign on November 14th.  I along with many others watched Ronda lose to Holly Holm.   Our group was disappointed no doubt, but we all rebounded quickly.  Why?  We experience knockdowns everyday.  Our children do too.  If we didn’t rebound we’d never be able to keep moving forward.  Though our hashtag campaign is over (for now, until the next event maybe), our mission to spread awareness must not be blown off course.

    CAS, or Childhood Apraxia of Speech is an interesting disorder from a charity standpoint.  Trying to raise money and awareness is difficult for a few reasons the way I see it.

    Reason 1: When kids are first dx with CAS, the financial burden on the family is astronomical.  Many times (most times) insurance doesn’t pay and families are left to figure out how to fund therapy for at least 3x a week (current recommended frequency for CAS is 3-5 times per week).  Since CAS frequently has additional co-morbidities, additional cost of therapy for OT and PT may be warranted as well (also not covered under insurance).  During this time, families can barely stay above water much less donate money to the charity who has been working hard to make life better for them.

    Reason 2: Kids can overcome CAS with the appropriate treatment, frequency, and intensity.  As wonderful as this is, kids get better and people move on.  Around the time families might be able to donate, they move on as their child has overcome apraxia.  It’s unlike autism in this way.

    I wish what people realized, is that even though there is a lot of work to do, the resources available to families living with apraxia now are so much more prolific than they were 20 years ago.  That is not an accident or coincidence.  It’s the direct result of the work done by CASANA, the Childhood Apraxia of Speech Association of North America.  A mom, like me, like you, had a child who couldn’t speak.  She knew something was wrong but professionals told her not to worry.  They went a year with no progress before seeking out other options, and even then, she had to trust her mommy gut.  There wasn’t anyone to ask or bounce ideas off of. Her son’s disorder wasn’t even called apraxia then!    There were numerous professionals who didn’t think it existed! 

    That alone shows where we have come, but we came that far because of people like Sharon who founded CASANA. The efforts of CASANA made it possible for:

    • CAS to be recognized as a separate and distinct disorder only in 2007!  
    • Fund research so that SLP’s are using best practice and our kids have access to best practice to ensure the best possible outcomes
    • Headed the efforts for CAS to have a national awareness day on May 14th starting only a few short years ago
    • Disseminate information on their website apraxia-kids.org
    • Offer webinars and professional conferences for SLP’s looking to learn more about dx and treatment for apraxia
    • Moderate a facebook group where they provide invaluable advice for parents
    • Fund grants for speech therapy via Small Steps in Speech
    • Fund grants for iPads
    • Promote walks and offer support and materials for volunteers who would like to organize one in their hometown
    • Print information materials such as the brochure I gave Ronda that day where she read it front to back and knew instantly that was the disorder she had!
    • Ensure that 85% of profits return directly to CAS related programs.  85%!!!

    Friends, we are here and are in a better place because of CASANA.  Honestly, there is just no other truth than that.  I tell you this professionally and personally. I know the staff members at CASANA.  They all wake up every day with one goal: to make the lives of the children affected with CAS better; and you know what?  My child’s life, and your child’s life are better because of them.

    #GivingTuesday,  December 1st is a national “Day of Giving.”  Please, please consider donating to CASANA. #knockoutapraxia would not have been possible without them, because I wouldn’t have had their brochure the day I met Ronda. That brochure, so thoroughly and accurately explained CAS  that Ronda instantly knew that was what she had, even though they didn’t have a name for it back then.  That same brochure Ronda then reposted on her facebook account spreading awareness to millions!

    Many times when we give, we know our money goes to that charity, but we don’t necessarily know WHAT it goes to. I can tell you.  If they meet their goal of 25K, the money raised from this Giving Tuesday will go directly to help fund 50 iPads with protective cases for kids with apraxia of speech.  Donate here to help!

    CASANA Giving Tuesday Donation Page

    A client of mine I know personally benefited from this program.  Look at him with his older brother here:

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    We have a saying amongst a group of us and it’s “we do this for our kids and we do this for all those who will come AFTER.”  I’m so grateful Sharon at CASANA had the vision and heart to continue to fight for all the children who came after, like my child…..so you can bet I will be participating this #givingtuesday and choosing CASANA.  Will you?  CASANA Giving Tuesday Donation Page

    If you donate $50.00, you can also get a limited edition shirt for your little apraxia fighter or for yourself!  12316361_924803280931748_2818964745271324178_n

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