Blog

  • International Women’s Day includes my “apraxic, IC kid”

    International Women’s Day includes my “apraxic, IC kid”

    I practice person-first language.  I make sure I use it in every setting.  If you’re not familiar with person first language, it’s the idea that you put a person *before* their disability.  The idea is that when we put the disability first, we define a person by their disability.  However, no person is defined by their disability.  A person is just…..a person first.

    So, instead of saying that bipolar guy, you would say, “that guy who has bipolar.”

    Instead of saying my apraxic daughter, I would say, “my daughter who has apraxia.”

    Instead of saying that “stutterer,” you would say, that child/man/woman who stutters.”

    There is a lot of debate about this honestly.  Some people think it’s political correctness gone too far.

    I have never had much of an opinion, except for the fact I made sure to use person first language so as not to offend anyone personally or professionally, and I never minded if someone said my apraxic daughter.  It’s all semantics.  Whatev.

    Well, that is until today.

    I work a day and a half in the same school as my daughter.  She is in a program called ILC (Integrated Learning Center).  In most districts, this program would be a Center Program, and it is, kind of.  In this district, there is more a focus on inclusion, but with para (classroom aid) support.  To get an aid though, you need to be in the ILC program.

    Ashlynn’s ILC teacher is AMAZING.  I mean, my daughter is on grade level in math and she is making huge gains in reading.  I can’t really even believe she can read a sight word book at times.  It took 3 YEARS of me helping her just be able to name the letters in her NAME!  Word finding impacts her BIG time.  Even if she could read I thought, she would NEVER be able to show it until years down the line.

    Wrong.  She’s coming home with new books every day she is “reading.”  It’s incredible.  I mean seriously incredible people.  She couldn’t talk three years ago.

    Anyway, other kids who need help reading get pulled out too, but they are pulled into a “resource room” that has no specific name.  They just get “reading support.” Ashlynn gets reading support too, but her programming has a name, and that name in this district is ILC.

    I’m part of many, many, many IEP meetings.  Parents ALWAYS worry about putting their kid in the “special classroom.”  Usually, it’s based off of their own experiences growing up, knowing and remembering the kids who were in the “special classrooms.”  They don’t want their child to be labeled “special” “different” or made fun of.  We assure them things have changed.  It’s not like that anymore.  And it’s true.  Seriously!  I do think things have changed drastically since even when I was in school.

    I have to digress really quick, but it reminds me of my colleague I worked with many years ago named Mr. G.  He was a SPED teacher from Brooklynn and he was funny, engaging, and the kids absolutely LOVED him.  Apparently he was in SPED when he was younger.  You know, the “special classroom.”  He said the buildings and programming were so archaic in Brooklynn when he was a child at the time, that he was literally separated from his general ed peers into a classroom in the basement of the school, and the only window had bars on it. He was also a bit of jokester, so when he told the story it was funny.  However, if you think about it, there is nothing funny in what he said.  How awful.  A man who was able to get a master’s degree in teaching, was once banished to a basement of a school with bars on the window.  How on Earth did he make it out on the other side?

    Anyway, yes, times have DEFINITELY changed since then thank goodness.

    Where is this story going, you might be asking.

    Well here it is.  I never worried about Ashlynn being my “apraxic daughter” or in “ILC” until today. I was working at her school with a child who has been identified as GT (gifted/talented) and a double X’r (twice exceptional).  The twice exceptional refers to the fact he is gifted, but still needs support from SPED (me…speech).

    We were walking in the hallway and I looked out the window toward the playground where I knew Ashlynn was playing.  I said I just wanted a quick peek at my daughter.

    He asked me, “Is her name Ashlynn?”

    “Yep,” I quipped proudly.  “Wait, how do you know?” I inquired.

    “Oh, she’s an IC kid,” he said matter-of-factly.

    My face fell.

    “How do you know she’s an “IC kid?” I said, and my entire body literally cringed.

    “Well, she goes to that room.”

    I studied him.  Innocent.  Blunt.

    I wanted to ask him what an “IC kid” was, but I just couldn’t bring myself to ask.  I was too scared of the response. Maybe it would have been innocent too.  Why did I automatically think it would be negative?

    I don’t know.  All I did know, is I do NOT, definitely, never, ever, want anyone EVER to label MY daughter as an “IC kid.”

    She’s a kid.  She’s a kid who goes to ILC because she has apraxia, and that’s it.  There’s nothing else to see here.

    I don’t blame this kid.  He’s an innocent KID for Pete’s sake.  I still felt bummed though.

    I came home tonight to this:

    12805675_10206930833921930_3211585399080345387_n

    She lost her first tooth, or should I say “teeth.”  Both bottom front teeth came out tonight.  She was scared, then happy, then nervous for the “tooth fairy.”  She told me, “Tell the tooth fairy to not scare me, okay mommy?”  She also said, “maybe I will get five dollars.”  My husband who was in the room next door spit out his drink and said, “where did she get 5 dollars??”

    I smiled.  I don’t know.  She came up with it all on her own though.

    I kissed her goodnight, and I vowed to make it my mission everyone see her for HER.  She’s not an apraxic kid.  She’s not that special kid.  She’s not that IC kid.

    Her name is Ashlynn.  She was born to move mountains, to kick ass, or to be whoever the hell she wants to be. Today is International Women’s Day, and I love this quote:

    12799461_978905362191579_851408342886117926_n

     

    Ashlynn not only handles all the shit that has been handed to her, but she handles it with grace and a smile.  I know that will only continue to serve her well.

    So today, I have officially sealed my opinion, that person first language IS important because Ashlynn is Ashlynn above any, and EVERYTHING else.

  • Finding all the wrong words or no words at all.

    Finding all the wrong words or no words at all.

    I think one thing, well actually I KNOW one thing I never knew about CAS before Ashlynn, was the significant difficulty kids with CAS tend to have with word finding.

    Ashlynn and all of my clients struggle with this to varying degrees.  Sometimes, Ashlynn’s seem innocent.  She’ll call me grandma after she’s been with her grandma all day.  She’ll say “today” when she really meant “tomorrow,” or say “tomorrow” when she really meant “today.”

    Sometimes though, despite being able to speak, “finding her voice” as we like to say, that doesn’t always mean she can find her words.  This is especially true when she is sick, tired, or both.

    I received a text from a friend a couple weeks ago.  Her son is a year older than Ashlynn, still in speech, but talks non-stop now.

    “I debated calling in today and letting G stay home.  He was just not himself this morning.  He said, ‘No school. I can’t.’  He walked down the hallway with drooping shoulders.”

    I asked her why.  She didn’t know.  That’s all he said.  “No school.  I can’t.”

    My response?

    “Stupid apraxia.  Even when they can talk, they can’t verbalize everything they are thinking/feeling.”

    A few hours later she texted me that G was sent home from school because he was sick.

    My daughter used to become overheated in her carseat.  It would cause her to throw up, but she would only tell me, “my neck hurts.”  I became really good at diving to a shoulder when Ashylnn’s “neck hurt!”

    Today I had the day off with both of my kids.  It was great!  We played, relaxed, and even took a nap.  Aren’t they cute?

    12813978_10206896459142582_2658989607059906506_n

     

    Ashlynn NEVER takes naps anymore, so I should have known something was up then.  She went to her private swim lesson tonight, and then we all went out to dinner.  I spent most of the dinner in the bathroom with her.  She kept thinking she had to go “potty.”  We walked around, we jumped, we danced, nothing.  She started saying she was tired.  She NEVER says this. I asked her if she felt sick.  She said no.

    We drove home, gave her a bath, and she went straight to bed.  I rubbed her back and asked her again if she felt sick. Did she feel like she was going to throw up?  Did her tummy hurt?  She just shook her head no.

    I went out to the living room, and not 5 minutes later I hear coughing and she is throwing up.

    Sigh.

    Not that it matters I guess whether she had told me she felt sick or not.  It’s not like the outcome would have changed; but it is a glaring reminder of how speaking intelligibly and finding her voice, did not fix everything like I thought it would.  She will still struggle to find her words.

    I remember listening to a Ronda Rousey interview, and she was saying that when she received a bronze medal in the Olympics she was a young girl in her teens and people wanted to interview her.  She would beg her mom not to make her do it.  Her mom made her do it anyway, but her older sister would sit behind her chair, and when Ronda couldn’t find her words, her sister whispered some to her.  Ronda doesn’t do interviews anymore with her sister behind a chair, and that gives me hope.

    For now though, I’ll file away this event in case I need it later.  Just like I did when Ashlynn’s neck hurt.  I always say a mother is an expert on her child, and this is why.  Only I know these signs.  Only I was there through all of these situations and experiences.  ALL of them.

    Next time, I will know she needs to throw up and I’ll be prepared.

    I’ll give her the words when she can’t, or is just too tired to find them herself.  I will know because I have always listened and I will always listen to way than her words, and I always will.

    12687891_10206775282433240_6331308953531011615_n

     

  • Why are SLP’s still using “mouth exercises” for CAS??

    Why are SLP’s still using “mouth exercises” for CAS??

    I realized in the entirety of my blog, I have never even once addressed oral motor exercises, aka mouth exercises, or now being touted as oral placement therapy; in the treatment of Childhood Apraxia of Speech.  The “why” is actually very simple.  Massive amounts of research consistently demonstrate they are ineffective in the treatment of speech sound disorders.  In graduate school I had to do a paper on their ineffectiveness and I have an entire binder of research papers showing they are not supported; so yeah, I literally never even considered it.

    At one point, Ashlynn’s school therapist felt it was very important she round her lips to make the /w/ sound and had her using horns, but this was squashed pretty quickly.

    Ashlynn is now 6 1/2, and is intelligible at least 90% of the time in unknown contexts with unfamiliar communication partners.  The apraxic component to her speech is resolved and has been for at least a year.

    “She must have been mild,” you might say.  Wrong.  Though she wasn’t profound, she was severe.  She has additional co-morbidities of: oral apraxia, dyspraxia (limb apraxia), SPD (sensory processing disorder), and suspected dysarthria that make prognosis more guarded.  Even with all of those additional factors, I STILL never had her do oral motor exercises.

    What could it hurt?

    Technically, nothing, except wasting precious time; and let me tell you what was the most important thing to me after getting a CAS dx:

    TIME.

    I instantly started thinking about Kindergarten and she wasn’t yet 3.  Will she have an extra year?  Will she be talking by then?  Will she be intelligible by then?  If she’s not intelligible, how is that going to negatively impact her phonemic awareness skills?  If she has poor phonemic awareness skills, how will that impact her reading? Will I need to hold her back?

    I’m not alone.  Every parent I meet frets about this….so TIME.  Yes TIME is of the essence.  I needed Ashlynn to get remediated as quickly as possible, and quite frankly, though NSOME’s wouldn’t hurt her, the research is very clear they don’t help either.  To me,

    NSOME’s = a waste of time.

    Dr. Ruth Stoeckel, an apraxia expert out of the Mayo Clinic, created a user friendly handout for parents based on information gathered and collected by Dr. Gregory Lof.   It includes the most common questions parents may have, and then research based responses for why NSOME’S should not be used.  You can access that here:

    NSOME parent adaptation

    Some SLP’s swear by them. Some SLP’s do genuinely and honestly feel NSOME’s help children with motor planning disorders.  My response to them is that they are probably not giving themselves enough credit on their clinical speech therapy skills, because the research is very clear that to improve speech, one needs to work on speech.  Not use tools that mimic speech movements either, but actually work on speech.

    I’m not going to go through the handout line for line.  I really encourage you if you are a parent or SLP to read it yourself though.

    If the research can’t persuade you, please let my personal experience with Ashlynn be of some influence.  She had excessive drooling, jaw instability, slurring, and inaccurate target placement…all ASIDE from the motor planning. She entered into therapy based on motor learning principles right before age 3, and a little after her 5th birthday I wrote the post:

    Wait….is she the….R word? 

    I’m not saying every kid’s apraxic component is going to be resolved that quickly.  Many, many, MANY factors play a part including a child’s personality.  Ashlynn always tries and never gets frustrated.  How, I have no idea, but I can only assume that has contributed to her quicker progress, especially in the face of so many negative indicators. Hopefully, me being an SLP as her mom also helped. However, we never once used any NSOME’s.  What is the harm?  The harm is you are wasting time, and that’s not just an opinion, it’s based on research.

    You will not find apraxia experts using them.  Edythe Strand, Ruth Stoeckel, Tom Cambell, David Hammer, Gregory Lof…NONE of these people use NSOME’s.  The Childhood Apraxia of Speech Association of North America (CASANA) will not endorse them.  In fact, I did a search on apraxia-kids.org and came up with this page full of articles refuting their use.  Keep in mind, the executive director and director of education at CASANA both have young adult children with resolved CAS, and THEIR children NEVER had NSOME’S either, and they are resolved.

    Finally, the organization that certifies SLP’s, ASHA, has also refuted the use of oral motor exercises in the technical report on CAS.

    That’s why I never even wrote a blog post about it.  It should seriously not even be an issue. I have been shocked now to discover how many SLP’s are still using them!  They are a complete waste of time in the treatment of CAS, and as I said before, TIME was the most important thing to me when Ashlynn was dx.  Is it to you?

    no-sign-1872071

     

     

  • That moment someone cried because they know “what she’s going through.”

    That moment someone cried because they know “what she’s going through.”

    When Ashlynn was in preschool, there was a sweet girl in her class I’ll call J. Her mom and I hit it off right away.  Her mom is currently a stay at home mom, but she was a teacher before that.  We have similar ideas on parenting, discipline, and just raising kids in general.  We had a few play dates and the girls got along great.  Her daughter is typical developing, but she was very shy in preschool, and well, Ashlynn couldn’t talk, so they got a long great too!

    12107219_10206016300659170_5006257240511031123_n
    Ashlynn, J, and Jace at Fall Fest

    This year they are in the same Kindergarten class.  They are good friends playing on the playground at recess, holding hands, and sitting next to each other.  J is a big reason I never worry about Ashlynn having friends anymore.

    About two months ago, J’s mom caught me in the hallway and told me I should have Ashlynn join Girl Scouts.  With Speech, OT, and swimming, Ashlynn’s schedule is jammed; but J’s mom also caught Ashlynn’s Grandma one day, and Grandma said she was more than willing to take Ashlynn over to Girl Scouts.  I work on those nights, so it was really up to my husband and he agreed, so now Ashlynn is a Daisy Girl Scout.

    Since we registered late, the girl scout troop leader offered to have Ashlynn over on a Saturday to catch her up on things.  I was surprised she had googled apraxia and was very interested in making sure this was a positive experience for Ashlynn.   I later found out she has had a hearing impairment from birth, and likely went through many of the expressive and receptive language delays Ashlynn currently experiences.

    Every time I see her she tells me how much she loves having Ashlynn in her group.  When I went to the induction ceremony, she looked so proud when Ashlynn said her line (even if Ashlynn was holding her letter upside down and not showing!).  I had a feeling Ashlynn must have worked her way into this woman’s heart, but I wasn’t sure….until today.

    1935476_10206631067467956_3977387838183729297_n
    Ashlynn and her Girl Scout Troop leader at the induction ceremony

    I went to drop off some money we have collected.  The girlscout leader was once again telling me how wonderful Ashlynn is.  I was agreeing politely when she turned around and I saw tears in her eyes.

    I probably looked puzzled, and she quickly explained, “I get so misty eyed because you know, I know what she’s going through.  I know how hard it is and yet she comes every time with a big smile on her face ready to try.”

    I studied her face.  It was so genuine.  This woman did not have apraxia, but she had a language disorder when she was younger and she saw herself, she sees herself in Ashlynn.  I was sure of that now.

    I never thought about it that way.  That line,

    “I know what she’s going through.”

    It hit me.  Ashlynn is “going through” a lot.  She’s not dumb.  She knows her challenges.  I think I’ve done a good job to normalize apraxia for her and she knows her challenges are because of apraxia…..but they are STILL challenges.

    “I know what she’s going through.”

    I can’t get that out of my mind.  I think I know what she is going through.  I have degrees and certifications that prove I know.  I also am her mom, which makes me a pretty good expert on her…..but I will NEVER know the way this woman knows, what my little girl is “going through.”

    I sent a text to two SLP mommy friends the night I met the leader.  My exact words were, “I know it’s not a coincidence.  I wonder why we met.”

    I think I am finding out.

     

  • When your friend becomes your family, you help their children when they die.  Please help.

    When your friend becomes your family, you help their children when they die. Please help.

    One more follow up to my last story about my dear friend who has passed.  You can read about that here:

    Under the Influence.  Goodbye Sarah.  RIP

    Many highschool friends, most highschool friends, remain just that.  Friends you had in highschool. But sometimes, if you’re lucky, one of your highschool friends turns out to be a sister.  As it turned out, I was one of those lucky people.

    When the yearbooks were signed and the promises to stay in touch were made, my dear friend Sarah and I kept that promise to each other.  I’m sure many best friends talk about how they are family.  When you are young, I imagine we say this a lot, but then you grow older and you realize family is always there, but friends are fleeting.  They might have the best of intentions, but in the end, the people who are left in your corner are usually your family.

    Turns out, Sarah was not only a friend, but she was my family too.  Always in my life until her tragic end.  It goes without saying then, that the love I had for her, and the love she had for me indisputably spread to our children.  Children are an extension of their parent, and if you love the parent, you can’t help but love the child.  It just comes with the territory.

    I held Sarah’s first child at the hospital

    232323232-fp93232-oliucwkrpb59769-=otb2333a6;5a--5aXROQDFb232426239;28-ot1lsi
    Me and Clive

    232323232-fp93232-oliucwkrpb5976-7=otb2333a6;5a--5aXROQDFb2324262398933ot1lsi

    And she held mine

    1930692_1230664919340_7686312_n
    Sarah and Ashlynn

    Naturally they would be friends.  They couldn’t not be, we thought.

    I attended baptisms and birthdays

    1382839_10201364848938093_420287949_n
    Jack’s baptism

     

    227331_1070928368335_6134_n
    Clive’s 1st birthday

     

    She attended my kids’ birthdays and baby showers

    561945_4086986245588_1645998013_n
    Ashlynn’s 3rd birthday
    1917925_1196259179218_7819022_n
    Ashlynn’s baby shower

    …and then we lived life.  Not as friends.  No way.  We’ve been through too much for that.  As family.  As sisters.

    Zoos

    302589_2284531585348_302844807_n
    Ashlynn and Clive

    Halloween

    562337_10201276020915139_533797219_n
    Jace, Ashlynn, Jack, and Clive

    Pool days

    10517695_10203140066077412_6009131077743989761_n
    Me and Ashlynn and Sarah and Jack

    I could go on.  I told another friend, how can I capture all those memories? How can I adequately convey what they all meant?

    All I know to do now is help her boys.  I love them, even if they never remember me.  To help them, is to continue Sarah’s memory.  Please help me help them.

    A fund has been set up.  Many of you have asked what you can do and this is it.

    4259f183-4257-4774-8052-fb829e4373bd_profile

    Oh my heart, look at them.  This is the last time they went to the zoo with their mother about a week before she died. Please help them.  They have been living in poverty.  They are with their father now, but he too makes so little money and doesn’t even have a car to get them to school.

    Please go here and donate.  Please.

    https://www.youcaring.com/clive-dall-jack-dall-507010

     

    Much love,

    Laura

     

     

  • Under the influence.  Goodbye Sarah.  I love you. RIP

    Under the influence. Goodbye Sarah. I love you. RIP

    A departure post from apraxia, but I would be remiss if I never publicly wrote about the death of one of my best friends.

    Today, January 20th 2016 I received this text:

    “She is dead!!!”

    What did you think when you read that?  Then you can’t even imagine what I thought.  That “she” is my best friend since I was 14.  I’m 35.  That means that “she” was a girl I have known for 21 years.  21 years…..longer than half my life and she’s NOT a family member.

    That “she” saved me.  I had come out of a sheltered 8 years of private Catholic school and public highschool ate me alive.  I ended up eating my lunch the entire first few months in the bathroom.

    Thankfully basketball came around.  I never did club, but I was “a natural” as my dad would say.  I easily made the team even though I showed up to try outs in Payless tennis shoes that caused me to slip and slide.  Sarah didn’t care. Who is Sarah? Oh yeah. Sarah is that “she.”   She was a freshman about 6 foot tall.  She had a different solution to ridicule than eating in the bathroom.  She attracted attention and drew laughs.  I have this vision, just like a movie scene, seeing her in the hallway of Littleton Highschool; and she was participating in Spirit Day in which the basketball team was to wear ties; and she put hers around her forehead!

    Being a 6 foot freshman girl was already drawing attention, but then she decided to slap her “spirit wear” around her forehead.

    To be frank, I admired her balls.  She was ballsy.  Where I was hiding, she was like, “bring it bitches!  I DARE you to make fun of me.”

    I’m not trying to knock public school, but I BREEZED through freshman year.  Apparently my Catholic 8th grade education was the equivalant to freshman honors in public school.  The only person who could challenge me was that 6 foot girl with the tie around her head.  I discovered she was brilliant.  Verbally gifted.  An unbelievable writer.  We challenged each other.  She was the ONLY one I trusted to proofread my writing, and she was the ONLY one who made my writing better.  Let’s face it though.  She was brilliant in general.  If it wasn’t for her, I would have failed chemistry.  She wasn’t just book smart though.  She was also artistic.

    She loved models.  She was an artist with a talent for drawing portraits.  In fact, she drew a black and white charcoal sketch of me once and at the time I was riddled with acne.  Of course a black and white sketch left all that out, and for once, I felt someone saw me as beautiful.  That someone was that “she.”  You know, the “she” that is dead.

    We went on to live life together.  Proms, boyfriends, teenage rebellions, vacations, road trips, heartbreaks, engagements, weddings, babies, careers……we would grow old together and we would laugh about our life.

    Only….Sarah fell into something I couldn’t help her with.  Stricken by mental illness, fueled by drug abuse, she pushed anyone trying to help her away.  The system?  Well, her sister Sharon put it best.

    A colossal failure.

    Sarah and I had a special connection.  Both Scorpios and intuitive by nature, we had a connection.  It’s not different than when you are thinking of someone and they call you, and then you say, “oh my gosh!  I was JUST thinking of you!!”

    Sarah and I had that all the time.  Well, if you know me though, you know I don’t believe in coincidences, and neither did Sarah….so when we were thinking of one another we knew to call.  We both knew it wasn’t a coincidence.

    Until the last two years.  She drifted further and further away.  I felt helpless.  I watched via social media as everyone else did….but I was still powerless.

    I found out she died today.  I don’t know when she actually passed at the time I am writing this, but I was in my car today. Alone.  I asked her to play a song for me.  Something we knew.  Something we sang.  Something I would remember her by.  We have MANY songs she could have picked from.

    I started scrolling through stations.  I was looking for some old school song.  Some song to reminisce.  Instead, I ended up at the start of a catchy song and I couldn’t change the channel.  As  I listened I cried.

    Well played Sarah.  I’ve never heard this song before…but you were speaking through it.  I understand now.  I love you friend.  You entered my life like a movie, and you leave like one too.  I learned you jumped off the parking garage at the Denver Center of Performing Arts.  Your final act.  I love you Sarah Elizabeth.  I will never forget you, how could I?  You are forever written into my life story and will always live on through my many memories.

    Just another morning
    With shaky hands, pounding head
    I guess I did it again
    Try to leave, but I can’t stand
    Start to think that I’m better off dead
    I’m sick of this condition
    Your kiss is my addiction
    I can tell you cast a spell that knows no moderation
    It’s dangerous, the things we do
    Under the influence, I got no defense
    It might be criminal, but still I just can’t quit
    Under the influence, I’ll take the consequence
    Well if it’s poisonous, let it take my last breath
    Under the influence
    Temptation, creeping up on me
    Gets under my skin, won’t let me be
    Haunt my days and haunt my sleep, viciously unrelenting
    Oh, lay down again
    Oh, give in again
    And oh, feel good again
    Begging for another beautiful sin
    It’s dangerous, the things we do

     

    https://www.youtube.com/watch?v=FGSC8a-eei4Under the Influence

     

     

     

    full