SLP Mommy of Apraxia

Category: Apraxia

  • Interview with Mikey. The wish that turned into a passion.

    Interview with Mikey. The wish that turned into a passion.

    I am so excited to have probably my favorite person I know on social media I know with us today. His name is Mikey and he is admin to the page Mikey’s Wish – Verbal Dyspraxia Awareness. Mikey’s famous tagline is that himself and others with verbal dyspraxia/apraxia are “too cool to follow the neurotypical rule.”

    Mikey thank you so much for being here! For my readers who don’t know, can you start by telling us about yourself?

    My name is Mikey and I am 16 years old. I was diagnosed with verbal dyspraxia/apraxia when I was 2 and ½ years old. I live in a village just outside Birmingham in the UK. I finished school last year and I am now doing a level 3 photography course in college. I live with my mum, dad, older sister Becki and younger brother Ben. My family have been a huge support throughout my journey with verbal dyspraxia.

    1. What made you decide to start your facebook page of now 6000 worldwide followers and how have you seen it grow and evolve?

    I started my facebook page 3 years ago after writing a poem called ‘I am the Boy’ about living with verbal dyspraxia/apraxia and wanting more awareness. This prompted a conversation with my mum where she said that the loneliness and not knowing anyone else who shared my diagnosis was the hardest thing to live with. This made me think that if my mum felt this way there must be others feeling the same. I had seen many facebook pages about verbal dyspraxia but they were more about parents asking questions and looking for answers. I hadn’t actually seen one from the point of view of the person living with it. That is when, with support from my mum, I set up my Mikey’s Wish Facebook page. It started off with the aim to raise awareness but the more I shared my story of growing up and living with verbal dyspraxia/apraxia the more I realised that it was actually helping others who shared my diagnosis and their families. I began receiving messages from people thanking me for helping them to understand what their child might be going through and also helping their child realise that they were not the only ones living with verbal dyspraxia/apraxia. I was actually giving them hope for the future. Supporting others, knowing that I am helping others understand their child’s diagnosis and helping them realise that there are others sharing their diagnosis is the most rewarding part about sharing my story on my Facebook page.

    1. How has verbal dyspraxia/apraxia affected or changed you in more ways than just speech?

    When I was younger living with verbal dyspraxia was difficult. Struggling to talk in a world where so much importance is put on speech, watching all those around you find speech so easy wondering what is wrong with you is soul destroying. Then going to school, already feeling different, to then find out that you also struggle with reading and writing even at a young age knocks your confidence. My family and school had to fight to get a Statement of Educational Needs so that the school received the funding needed to give me the 1:1 support and speech therapy that I needed to have any chance of achieving. Even with all this support in place I still started senior school 4 years behind my peers, still feeling different and not good enough. My self esteem and confidence were really low. I was determined to improve. My speech was becoming intelligible and I had great support in school. I had access to 1:1 support in most lessons. Dyslexia was also mentioned throughout my schooling but because I already had great support in place it was decided that we didn’t need to push for a diagnosis. After 4 years in senior school I managed to all but catch up with my peers and I managed to gain 3B’s and 3 C’s in my GCSE’s and managed to secure a place at college doing a level 3 photography course. Even now, at 16 years old, having had amazing support from everyone around me I have huge anxiety surrounding my speech. I can’t bring myself to talk in front of people I don’t know and social situations can be difficult. Having said that I am surrounding by a large group of amazing friends. Verbal dyspraxia/apraxia, I believe, has moulded me into the person I am today. It has made me compassionate, quietly confident and determined.

    1. What would you want people to know about you and others living with verbal dyspraxia/apraxia?

    I would like people to know that those of us that happen to live with verbal dyspraxia/apraxia are just ‘normal’ people. We can understand everything that is said to us. We know in our heads exactly what we want to say but the messages from our brain to our mouth get mixed up causing our speech to become unintelligible. Once our speech becomes intelligible we can then also be left with word finding issues. If you are lucky enough to come across someone with verbal dyspraxia/apraxia just give us time to process what is said and find the words we need to answer you. Take the time to understand us. Not being able to talk does not mean that we are unintelligent. We are intelligent, amazing, hardworking and determined. Just take the time to get to know us and we could end up being the coolest person you know.

    1. What advice do you have for those growing up with and/or living with verbal dyspraxia/apraxia?

    The advice I would give to others growing up with verbal dyspraxia/apraxia is to work hard on their speech but don’t let it get them down. It will be a long, slow road but it will be so worth it. I know that it is hard growing up feeling different but as you get older you will realise that it is the difference that makes you, you. Fighting for a voice, facing adversity and overcoming everything that verbal dyspraxia/apraxia throws at you is what will mould you into the person that you will become. I would not be me or had all the amazing opportunities that I have had if I didn’t have verbal dyspraxia/apraxia and I am proud of who I have become and what I have achieved so far. You are amazing and don’t let anyone tell you any different. Embrace your uniqueness.

    1. What advice do you have for parents of kids with verbal dyspraxia/apraxia?

    The advice I would give to parents is be supportive but not too pushy. Fight to get your child the support they need but don’t make them feel any different from their siblings. My family have always been really supportive but they have never treated me any differently from my siblings. I have been given the same opportunities as them and never been stopped from doing or trying anything. Don’t push too hard with speech therapy. Obviously it needs to be done but try and do it in a way that the child doesn’t know they are doing it. Play family games and make it fun. It’s hard for a child spending all day in school and then come home and be sat down to do even more work, especially when it is so difficult and frustrating for them. Finally, it’s a long, hard road with no quick fixes so celebrate every tiny milestone.

    1. Why is awareness so important to you? What is your ultimate goal?

    Awareness is so important to me because it is the lack of awareness and understanding that is so difficult to live with. Having to explain to everyone you meet why you struggle to communicate or why your speech sounds ‘funny’. Everyone deserves understanding. Young children being called lazy because their speech is delayed when they live with a neurological speech condition is wrong! Parents being told that it is their fault because they didn’t talk or read to their child enough is wrong! Professionals having never heard of verbal dyspraxia/apraxia is wrong! Schools not having any strategies or understanding of how to teach those with verbal dyspraxia/apraxia is wrong! Discrimination in the work place because of some ones speech is wrong! Awareness and understanding of verbal dyspraxia/apraxia is the only thing that will help change all those wrongs. My ultimate goal would be for verbal dyspraxia to be known and understood in every school, college and work place so that those who share my diagnosis will get the understanding and inclusion that they deserve.

    Mikey I can’t thank you enough for this interview but also just for ALL that you are doing to for verbal dyspraxia/apraxia worldwide!  You are an amazing young man who gives me so much hope for Ashlynn and also comfort in knowing she has a worldwide community who has her back.  Thank you for encouraging her and all others!  You have already accomplished so much at 16 and I have confidence that in the future you will see all that you wish to see come true.  Maybe me and my daughter Ashlynn with apraxia will meet you one day!

    To follow Mikey and his story follow him on:

    Facebook: Mikey’s Wish – Living with Verbal Dyspraxia

    Twitter: Mikey’s Wish

    Instagram: Mikey’s Wish

     

     

  • Apraxia? Phonological Disorder? Language Disorder? What’s the difference?

    Apraxia? Phonological Disorder? Language Disorder? What’s the difference?

    So many times I see parents post a video of their child speaking, or attempting to speak, and they ask, “Is this apraxia?”

    The follow up question is usually something like, “If it’s not apraxia, then what ELSE could it be?

    The answer is that childhood speech and language delays can be caused by a variety of factors.  It’s important to keep in mind too, the difference between “speech” and “language” disorders when we are discussing speech and language delays.

    On the surface, speech and language seem like different sides of the same coin.  This is particularly true when people or even professionals may seem to use the terms interchangeably.  If a child isn’t speaking, they must have a “speech” problem right?

    Not necessarily.

    A child with a “speech disorder” has a problem in the way or how they say sounds. Most of you who read this blog know my daughter has apraxia, and apraxia, in its truest sense, is a “speech” disorder.  It’s not a language disorder (although my dear daughter and many other kids have both).  Other common factors that can cause speech disorders, or the way kids say their sounds are:

    1.) A hearing loss, or even a history of chronic ear infections – If a child has a hearing loss, or is suffering from a hearing loss due to chronic ear infections; their typical speech development *may* be negatively impacted. Without going into a technical explanation, it makes sense that a child with ear infections who is hearing like they’re “under water” during the time they are supposed to be learning how to talk, may have speech and/or language development that is delayed.

    2.) Stuttering – a disruption to the flow of speech, is also considered a “speech” disorder because it is characterized by disruptions in the production of “speech sounds.”

    3.) Phonological Disorder – Phonological disorder is one of the most common speech disorders that SLP’s treat, so I was shocked to go to the ASHA website and find this definition:

    Speech sound disorders that impact the way speech sounds (phonemes) function within a language are traditionally referred to as phonological disorders; they result from impairments in the phonological representation of speech sounds and speech segments—the system that generates and uses phonemes and phoneme rules and patterns within the context of spoken language.

    It is NOT that complicated.  To put it simply, phonological disorder is a speech sound disorder in which the child typically makes consistent patterns of errors.  For example, one common phonological process is called fronting.  In this process, the child will consistently produce the /k/ sound as a /t/ sound, and the /g/ sound as a /d/ sound.  It is a predictable, patterned error.  This child, regardless of the word will usually always make these substitutions.  However, a child with a phonological disorder can have several phonological processes they are employing and be quite severe and have significantly reduced intelligibility.  A child with phonological disorder may have numerous substitutions, omissions, or distortions.

    4.) A motor speech disorder such as apraxia or dysathria –  Apraxia of speech refers to a child’s difficulty with the planning and programming of speech production that results in inconsistent errors, deficits with prosody, and significantly reduced intelligibility.  Unlike kids with phonological disorder, children with apraxia do not always have predictable and consistent error patterns.  This could be on repeated productions of the same word, or the ability to produce one sound in different words.

    For example, a child with apraxia may be able to say an /m/ in the word “momma,” but be unable to say or inconsistently say an /m/ in the word “more.”  Another child with apraxia may say “baby” for baby once, but when asked to say it multiple times may produce it different ways such as saying: baby, bay-ee, daby, or day-ee.  A child with apraxia may have numerous substitutions, omissions, or distortions.

    In addition, children with apraxia have some sort of prosodic disturbance to their speech.  This can manifest in ways such as: stressing each syllable in a word resulting in more “staccato” sounding speech, or errors with pitch, intonation, rate or volume.

    Graphic depicting the differences and overlap between phonological disorder and apraxia.

    Language delays do not involve the actual production of speech sounds (although the two can overlap). Language delays can be caused by many factors as well, and include:

    1.) A late talker – A late talker is just a typical child who talks late and has no additional speech or language issues from it.  The ASHA website offers this explanation “At onset, it is difficult to distinguish late talkers from late bloomers, as this distinction can be made only after the fact,” which as a parent and professional of children with apraxia, this is a pretty DANGEROUS and potentially hazardous distinction if you are just waiting around to see if it’s late blooming or something else.

    2.) A language impairment – There are many components of language. Language is comprised of five major components including: phonology, morphology, semantics, syntax, and pragmatics.  In addition, children can have difficulties expressively or receptively with these components.  Some children can have both, getting a diagnosis of MERLD or mixed expressive/receptive language disorder.

    3.) A hearing loss –  This is repeated on this list, because a hearing loss can also cause delays in language development as well. ASHA describes its effects in the following:

    There are four major ways in which hearing loss affects children:

    1. It causes delay in the development of receptive and expressive communication skills (speech and language).
    2. The language deficit causes learning problems that result in reduced academic achievement.
    3. Communication difficulties often lead to social isolation and poor self-concept.
    4. It may have an impact on vocational choices.

     

    3.) A medical or genetic condition – Other causes of language delay or impairment could be but aren’t limited to:

    Autism
    Fragile X
    Down Syndrome
    Cerebral Palsy
    Cleft lip/palate

    To complicate things even more, a child with a medical disorder could also have a co-morbid speech or language impairment as well!  It’s important to always know the etiology because an accurate diagnosis ensures and informs therapy.

    What I hoped to clarify in this post is that the question “Does this look like apraxia?” is just a little (okay a lot) more complicated than it seems.  Obviously the best place to start is to get a comprehensive evaluation!  If apraxia is suspected, it is best to get a differential diagnosis from an SLP who has received additional training past their post graduate degree in apraxia of speech.

    To find an apraxia expert near you, or to get listed as an apraxia expert,  go to apraxia-kids.org and click “find a speech therapist” at the top.

  • Whatever it takes: A day on the brink

    Whatever it takes: A day on the brink

    Ashlynn had oral surgery today to fix a ridiculously thick upper labial frenulum that was impacting her front teeth.  I have anxiety.  That’s no secret.  I was pretty nervous.  I had like every prayer warrior I could think of praying for her.

    It’s not that serious of a surgery in the grand scheme of things; but she was going to have to take a valium the night before, and then one and hour before and one right before surgery.

    I gave her the valium pill  (meaning I watched wringing my hands while my husband gave her the pill) and waited.  The surgeon said the pharmacist may fuss at the prescription, especially since she is tiny, but not to worry.  Um……telling a worrier not to worry is like telling the sun not to come up.  Actually it might be worse.  It made me freak out more than had he said nothing and just prescribed the pill.

    I immediately decided she would sleep with me, because if I woke up I needed to hear her breathing. That was basically a joke because the valium made her hyper and crazy emotional.  She would laugh hysterically and then just start balling uncontrollably.  Every emotion was magnified and out of her control.  She talked incessantly and didn’t get to bed until 10!!  Despite this, I kept her home from school because I figured she would feel pretty tired.

    Wrong

    She woke up on the right side of the bed happy and ready.  In hindsight, I should have just sent her to school and then taken her out when it was time for the procedure.  She was also (and she told me multiple times) very MAD I was not letting her go to school. It’s amazing right?  She has no close friends, struggles in every subject, and was just bullied recently…..but she’s mad I didn’t send her.  Her internal resolve and determination is incredible.

    Anyway, I digress.  I let her graze on food all day since she would only be able to eat soft foods after the surgery.  I gave her the second valium an hour before and it made her hyper again.  She was talking incessantly, and at the doctor’s office she was literally jumping and running in the lobby.  If you know my child, she is pretty much the opposite of a sensory seeker, so seeing her do this on a drug that’s supposed to make you sleepy was crazy town.

    The doctor made the decision in light of her behavior not to give her the third valium. The procedure went amazing.  The surgeon and his team were amazing and awesome with kids.  Ashlynn though was awesome too.  High tolerance for pain means she didn’t even flinch when the needle went in for the anesthetic.  He asked her to close her eyes, but I explained she wasn’t going to be able to do that on demand because of her motor planning issues, but seeing a needle wasn’t going to freak her out.  She gave blood for her genetic testing last summer staring at the needle and joking with the flabotomist that she was “taking a lot of blood wasn’t she?”  The flabotomist remarked in her whole career Ashlynn was the only person who smiled giving blood. LOL

    So that’s the good part.  Everything else was pretty much a shit show.  I’m sorry to cuss, but sometimes it’s the only words that cut it. The doctor’s orders were clear.  Relax, take it easy, eat soft foods, do medicated mouthwash rinses (which turned into salt water rinses since Ashlynn can’t spit), alternate ibuprofen and tylenol, and keep lips closed and ice the outside. Sounds basic.  I got in my car and turned on Imagine Dragons “Whatever it Takes.”  I told Ashlynn it was our song.  We do whatever it takes to help her.  We never give up. We do what it takes.  I was feeling pretty good.

    However, Ashlynn apparently thought it was opposite day.  She immediately and incessantly kept talking.  I kept telling her to keep her lips closed and then she would burst into tears that I was being mean to her and not letting her talk.  I calmed her down with the promise of a present.  That was short lived because she kept biting the ice pack (hello SPD).  If I corrected her to not bite it, she became hysterical.  Hysterical = bad because she could rip out the sutures.

    “Fine just give me the ice pack and talk.  Throwing a tantrum will rip out the sutures.”

    We picked up her brother, and he was trying to be helpful and told her (nicely) to stop talking so she doesn’t bleed.  That was code for “Let’s go to War” in Ashlynn’s world and they started fighting on the way home.  My stress was at a 10.

    Once home, she decides she’s famished.  Not hungry…FAMISHED.  She can only eat soft foods.  I feed her two bowls of noodles, 5 yes FIVE pieces of bread, countless squares of cheese, a banana, and then an ensure calorie drink I had my husband pick up on the way home.  After dishes I go downstairs and find her eating gummies she got out of the storage room!!

    “What the hell are you doing??”  You can’t eat gummies!!!”

    Not my finest moment I know.  She burst into tears I was yelling at her.  Told me again how mean I was being.  Again, she is supposed to be resting.  Most kids who took valium would be asleep.  Nope.  Not my kid.  I go downstairs again to find her bouncing on our big yoga ball.

    “Ashlynn….you’re supposed to be taking it EASY!!  Get up upstairs and watch a movie!!”

    Ashlynn hates movies.  She is 8 years old and due to a visual processing motor problem and language processing issues, she cannot follow the story line of an entire movie and therefore has never watched one completely through.  She bursts into tears again, throws a tantrum and guess what?  Her suture finally decided it had enough stress and started bleeding.

    I got a washrag and applied pressure just like the doctor said to do.  She seemed to realize it was somewhat serious now.  My son was majorly freaking out trying to help me out.  Ashlynn was still mad I had been mean to her.

    Bedtime came and I had to try and do a salt water rinse.  She still can’t spit.  She has one motor plan.  Swallow.  She can’t chew gum either for this reason.  First sip.  She swallows.  Second sip.  She swallows.  Third sip, she somewhat spits all over my mirror but I praise her.  Fourth sip, she swallows.  Fifth sip, spits all over my mirrors.  I have NO idea if any reached her suture, but we tried.

    She’s finally in bed. I have the song “Whatever it takes” on again.  Tomorrow is a new day.  Dang parenting his hard, but I can’t give up.

    Whatever it takes.

    Playing on snapchat trying to get her to be quiet and keep her lips closed!
  • Famous Faces Walk for Apraxia in L.A’s Walk to Talk!

    Famous Faces Walk for Apraxia in L.A’s Walk to Talk!

    [wysija_form id=”1″]

    It almost seems crazy now, but just 3 years ago Apraxia didn’t have a face. There was not ONE well known person who had fought apraxia and overcome.  I was an SLP before my daughter was born and I can tell you after she was diagnosed, even though I was an SLP, the fear, worry, and guilt that gripped me hung onto me and wouldn’t let me go.

    It haunted me. It would keep me up at night.

    I would scour the internet but I could not find one famous person who had apraxia. Stuttering has faces.  Dyslexia has faces.  Down syndrome has faces.  Autism has faces of successful people living their dreams, but apraxia? Nope.

    The fear in my heart would threaten to overtake me at times.

    I remember wishing and praying with every ounce of my being that apraxia had a face.  Not even a spokesperson, but JUST a face that I could look at and say, “hey, that person had apraxia and look at them now.”  I tried to follow the advice of Ghandi who said “Be the change you wish to see in the world,” and I started my blog and my facebook page in an attempt to spread awareness.   I could have never dreamt or even prayed that awareness would come after I would read a Rolling Stone Article, an article whose first paragraph read like a case history for apraxia; and I would find myself standing in the rain that very night with my daughter waiting to ask Ronda Rousey if the speech impediment she had when she was little was in fact apraxia.  

    Since that time I have now met many, many faces of apraxia and I have found many of them in the unlikeliest of places. Mikey from Mikey’s Wish is one of them. This 16 year old boy from the UK started a Facebook page around the same time I started mine,  and he is probably one of my favorite faces who is always doing and writing amazing things and encouraging Ashlynn.

    This past weekend I once again packed my daughter up in tow on a wild adventure to go to L.A.’s Walk To Talk for Apraxia to benefit the Childhood Apraxia of Speech Association of North America.  Unlike the time I drove across town during rush hour and waited in the rain to see Ronda, this trip had more merit.  Ronda Rousey was confirmed to be a guest speaker and I knew if I didn’t go I would forever have regretted it.

    Upon arriving at the walk, we happened to park our rental car next to my fellow apraxia mom and admin to the group Ronda Rousey: #knockoutapraxia, Bree Vanegas who drove down from Inland Empire, California.  As we walked to the registration table together, I saw one of my bootcamp apraxia mentors and apraxia SLP extraordinaire Dave Hammer.  He had come out from Pittsburgh as a rep for CASANA.  His wife Kenda was also there and I was excited to see them.  Ashlynn loved Kenda and they bonded while walking around the park petting the puppies.

    Making my way through the park I spotted Alyson Taylor of A Girl with a Funny Accent, who I met in San Diego this past summer at the apraxia conference. I wanted so badly for Ashlynn to meet her then but we couldn’t make it work.  This time was different and was special for all of us.  Alyson immediately dropped to Ashlynn’s level and told her that she too had apraxia.   Ashlynn doesn’t always have the words when she’s put on the spot and gripped with anxiety, but I saw the spark and glimmer in her eyes.

    As I meandered over to get coffee and check out the face painting station, I saw a cute fluffy white dog.  As I looked up I immediately recognized actress Gage GoLightly, who gave a revealing interview about growing up with global apraxia.  I went over to introduce myself and asked to take a picture.  Ashlynn was shy at first, but when Gage asked her to pet her dog she had Ashlynn hook, line and sinker. Gage was such a real, down to earth, and sweet person.  I was immediately struck by her genuineness and her joy at supporting a cause she felt so close to.  She laughed about still being severely dyspraxic and practically doing the splits in the shower the other day.  I smiled at her story and marveled about just how much she reminded me of Ashlynn and in that moment I knew Ashlynn was going to be okay.  How do you thank a person for giving you that moment of peace and comfort when they didn’t do anything but be themselves?  It was amazing.

    As I was talking to my friend, I ran into the L.A Walk Coordinator Jaclyn Senis who made all of this happen!  Meeting fellow walk coordinators is in may ways, like looking in the mirror.  We all spend countless (unpaid) hours devoting every second of our spare time to creating an event that is memorable and meaningful to every child with apraxia that attends.  This was her first walk, and it fell on her BIRTHDAY!  I think that should speak volumes as to the character of people who volunteer to coordinate a walk.

    Soon there was buzz Ronda has arrived with her family and supporters.  Nervously I made my way across the grass to the tent.  I immediately spotted Ronda’s mom, who I instantly recognized from social media. She apparently recognized me or Ashlynn too because she flashed a large smile and waved in our direction.  All my nerves disappeared in that moment because I recognized her not as “Ronda’s mom” but as a mom who understood me without ever even meeting me.

    As we rounded the corner of the tent, Ronda stood in the middle.  When I met her the first time I had no idea who she was, but this time I think I was not only star struck, but amazed she was actually HERE.  Ronda Rousey was HERE at an apraxia walk of just a few 100 people and was going to speak.  How did this happen?  I stared on incredulously.  Ashlynn immediately freaked out and got shy.  She basically ran away.  Haha.  Ronda said she had her “balgrin” in the car and asked if she should get it.  I immediately said yes and  if you don’t know what that is….read her book.  It’s amazing!

    When Ronda returned with the balgrin, the ice was broken and Ashlynn immediately came up and held it.  I marveled at the fact that ALL three adults with apraxia had managed to cut through Ashlynn’s anxiety by finding something to make her feel comfortable with first.  Alyson dropped down to her level, Gage offered her puppy, and Ronda offered her “balgrin.”  This is home people.  When I say I want to find Ashlynn’s tribe…..this is EXACTLY what I am talking about.

    The speeches by Alyson and Ronda were both incredible in VERY different but wonderful ways.  No two people with apraxia are the same, and as Alyson mused in her blog post, “There’s no right or wrong way, our fights were won in two different ways.” 

    Ronda, Gage, Alyson, EVERYONE walked the walk around the park.  In that moment in this small park in Santa Monica on this fateful day of November 5th, 2017;  there was no dumb kid or smart kid. No MMA star or actress.  No successful or not successful person.  There were just families and their children walking and raising awareness with the shared belief that EVERY CHILD DESERVES A VOICE.   On the walk Ronda took Ashlynn’s picture on her cell phone as I talked to Gage and we both remarked at the “goosebumps” we got while talking to each other.  Ronda’s mom talked to Alyson’s mom and the humanity of our shared experiences blurred out boundaries of fame, wealth, or status.

    There is the expression about pinching oneself to make sure it is real.  I literally did this during this moment in time.  It was THAT incredible and unreal.

    You know, the world is so much smaller than we think.  We are all so much more connected than we ever dare to imagine.  I’m learning every person, on every end of the country or even globe, famous or not, is walking a journey called life full of love and laughter, but also bumps and pitfalls.  The human experience is a shared experience that transcends money, wealth, power, or race.  We all have a story to tell, and we are all shaped by our story. We are all souls looking for a connection.  Olympian, Judo fighter, author, writer, actress, SLP, teacher, or any other walk of life; our lives take on meaning when we can connect with others who share a familiar story.

    What started as a mission for hope, turned into a lesson about life on one sunny day, in a beautiful park in Santa Monica, California.

     

  • Happy 8th Birthday Bug Bug.

    Happy 8th Birthday Bug Bug.

    [wysija_form id=”1″]Mr. B,  here is your beautiful baby girl.

    My dad would say this to me EVERY birthday.  I’m not exaggerating.  I was born 10 year after my sister, and it wasn’t customary to hand the baby to the father so early; so when my parents had me and my dad held me for the first time, this phrase was forever burned into his mind.

    My due date was October 16th.  The four days following my due date were excrutiating.  I wanted to meet you so bad Ashlynn.  Each day passed and  you still didn’t come.

    It was a Monday night football game on the 19th of October, 2009. I was having Braxton hicks contractions like I had had all month, but this time I was distracted by the Bronco game!  I paced up and down the hallway trying to forget the pain as I cheered on our home team.

    When the game ended, the contractions were intense but erratic.  Being my first baby, I didn’t know if I should go in or not.  I finally called the on  call doc who said to come in.  Your dad took me to the hospital in a big and burly blue Dodge Ram. The ride was anything but smooth, and each bump brought pain.

    After laboring from 11:00 PM on Monday to 8:00 AM on Tuesday, you were born.  I can remember the exact moment.  I can remember the smell of the room, the blue of the cover, the humanity in the anesthesiologist, and then the moment I saw you.  They raised you up above the cover and I stared at the most beautiful wrinkled sight of red pink skin and tears I had ever seen.  My eyes streamed with tears and so did your dads.

    Our baby had been born to us.

    I have always found it funny since that day, Tuesday, October 20th, 2009, that your birthday was your happiest day.  I mean, I hope it is, and I will do everything I can do to make sure it is.  But, your birthday, and the birthday of your brother; were two of the most happiest days of MY life.

    Today is Thursday.  I am tired.  It’s been a long week. However, every birthday since we’ve lived in this house, I have hung balloons in our hallway for you to pass through on your birthday.  I thought about not doing it, but then I thought, you and your brothers birthdays were the happiest days of MY LIFE.  Losing sleep is a small price to pay to celebrate the happiest day of one’s life.

    So I stayed up and blew up the balloons and I hung them in the hall.  I watched old videos and smiled until tears flowed from my eyes.   I can’t believe you are 8 years old.  I can’t believe just a few short years ago life was so hard that my mantra was “the days are long but the years are short.”  Here we are.  The days were long and I blinked and you are 8 and when I blink again you will be 16.

    I’m so blessed to be your mother.  I want you to know I am ALWAYS proud of you.  Your friendliness undeniable, your determination unstoppable, and your spirit, unparalleled.

    Behind your name are a countless number of diagnoses, but they do not and never have defined you.  You have learned to overcome.  You have learned to press on.  You have learned happiness is found in simplicity.  You have learned that the secret to life is gratitude, and despite all of your challenges, I couldn’t be prouder.

    Happy Birthday “bug bug.”  I love you more than words could ever, ever say; and trust me, this writer usually has a lot to say.

     

  • Does my child have dyslexia?

    Does my child have dyslexia?

    If you have a child with a speech or language disorder, you have probably heard that they are “at risk” for future learning disabilities.  What are the prevalency rates though, and what does the actual research tell us?

    A study by Catts (1993) is a frequently cited study and found that,

    The literacy outcomes of children with SSD (speech sound disorder) have provided convincing evidence that children with SSD and concomitant LI (language impairment) (SSD+LI) have higher rates of literacy difficulties than children with isolated SSD.

    So what does this mean?  How high are the higher rates and what exactly are “literacy difficulties?”

    In 2004, Lewis et.al followed 10 children diagnosed with CAS (Childhood Apraxia of Speech) and compared literacy outcomes for them into the school aged years along side kids who were diagnosed with SSD (speech sound disorder) and another group who had SSD + LI (language impairment). At follow up, all 10 children with CAS demonstrated co-morbid disorders of reading and spelling.  This was a small sample size, but let me reiterate, ALL TEN children with CAS had future problems with reading and spelling.  Co-morbid rates though can’t be 100% right?

    A study in 2011 by Anthony et.al found that,

    Children with SSDs are at increased risk of having difficulties learning to read (Bird, Bishop, & Freeman, 1995; Bishop & Adams, 1990; Carroll & Snowling, 2004; Catts, 2001; Larivee & Catts, 1999; Raitano et al., 2004; Roberts, 2005; Snowling, Bishop, & Sothard, 2000). In fact, between 30% and 77% of children with SSDs struggle with reading (Bird et al., 1995; Larrivee & Catts, 1999; Lewis, 1996; Nathan, Stackhouse, Goulandris, & Snowling, 2004). Children with SSDs have as high a risk of developing a reading disability (RD) as children with a family history of RD (Carroll & Snowling, 2004), which is remarkable in light of heritability estimates for RD that range from 40% to 70% (e.g., Friend, Defries, & Olson, 2008; Pennington, 1989). The risk of children with SSDs having literacy problems increases with comorbid language disorders (Nathan et al., 2004; Raitano et al., 2004), severity of the SSD (Nathan et al., 2004), persistence of the SSD (Nathan et al., 2004; Raitano et al., 2004), and patterns of articulation errors that do not follow developmental trajectories (Leitão & Fletcher, 2004; Leitão, Hogben, & Fletcher, 1997; Mann & Foy, 2007; Rvachew, Chiang, & Evans, 2007).

    A study by McNeill (2009) found:

    The results indicated that the CAS group had inferior phonological awareness than the ISD and typical development groups. The CAS group had a greater proportion of participants performing below their expected age level than the comparison groups on phonological awareness, letter–sound knowledge and decoding tasks. There was no difference in the performance of the CAS and ISD groups on the phonological representation task.

    In this study, speech sound disorders are all lumped together.  Speech sound disorders include: phonological disorder, articulation disorder, and apraxia.  Depending on the study, anywhere between 30% to as high as 77% of children with a “Speech Sound Disorder” have difficulty learning to read.  That’s the quite the gap right?  There is almost a 50% discrepancy between studies.  So what gives?  Who is more at risk?

    We know every co-morbidity(which is a fancy word for additional diagnoses) increases the risk.  This especially includes children who have a language disorder.  This includes kids diagnosed with “mixed receptive/expressive language disorder,”  SLI (specific language impairment), language disorder, or language processing disorder

    I also bolded the phrase “patterns of articulation errors that do not follow developmental trajectories,” because up until 2007, apraxia was not officially recognized as a distinct childhood speech disorder by the American Speech Language Hearing Association. This is only relevant because the studies this data is taken from all are around 2007 and before; and if you know what apraxia is, it is a speech sound disorder, but also a motor planning disorder that does not present with patterns of errors and may or may not follow developmental norms for articulation.  In the above information, that EXACT description increases the risk for a reading disorder.

    The most recent research is now indicating dyslexia is a phonological processing disorder that parallels the core phonological deficit in speech sound disorders (Anthony et al., 2011). This research is groundbreaking because before we knew the risk for reading disability was higher in kids with SSD’s, but we didn’t have research telling us why.

    The bottom line though is this.

    Any childhood speech and language disorder increases the risk for a future reading disability.

    It would appear that children with CAS are at an increased risk, and those with CAS plus a language impairment or comorbid phonological disorder, are even more at risk.

    Are all reading disabilities then dyslexia?  The short answer is no, but dyslexia is by far the most common reading disability and can manifest in varying severities.  If you read research articles, reading disorder and dyslexia are almost synonymous.  For example in the 2004 article by Vellutino et al., this is the opening statement.

    We summarize some of the most important findings from research evaluating the hypothesized causes of specific reading disability (‘dyslexia’) over the past four decades.

    According to the National Institute of Child Health and Human Development, “reading and language based learning disabilities are commonly called dyslexia,” and according to the International Dyslexia Association,

    15-20% of the population has a language-based learning disability. Of the students with specific learning disabilities receiving special education services, 70-80% have deficits in reading. Dyslexia is the most common cause of reading, writing and spelling difficulties. Dyslexia affects males and females nearly equally as well as, people from different ethnic and socio-economic backgrounds nearly equally.

    The schools do not diagnose dyslexia, although they give all the same tests that learning centers give to diagnose it.  Schools are an educational entity, and thereby give “educational” diagnoses. The educational diagnosis for dyslexia is specific learning disability.  Knowing prevalency data and co-morbidities better equips special education teachers, parents, and other professionals to implement treatment strategies that can include pre-cursory and preventative measures to address potential and additional difficulties later in the child’s academic career.