SLP Mommy of Apraxia

Category: dyspraxia

  • SLP Mommy Top 10 posts of 2017

    SLP Mommy Top 10 posts of 2017

    I started this blog in 2012, shortly after my daughter’s diagnosis of apraxia when she was just under three. Since that time, she has made tremendous growth.  She speaks, she speaks clearly, and she can tell me about her day. She can tell me when people are mean to her, what her teacher said that was funny, and what she had for lunch.  These were all things she couldn’t do and I worried she would never be able to do when she was first diagnosed.

    We’ve added more diagnoses through the years including a language disorder, dyspraxia, ADHD, dysarthria, and this year….dyslexia.

    In spite of all of these challenges, watching my now 8 year old daughter wake up each morning and attack the day with happiness, kindness, bravery, and a resilience that is unmatched inspired me to do the same.  I always think, I have NONE of her issues….what’s my excuse?

    This blog/website has grown with an average of 300 visitors daily.  Whether you are a professional, parent, or just someone who cares, thank you so much for following along and being part of my desire to spread apraxia awareness in the hopes of helping every child with apraxia to achieve intelligible speech.

    Here is the Top Ten Countdown to my most read posts of 2017.  Cheers to 2018!

    10. As children walk to find their voice, local news outlets stay silent.

    “I have to say I want to give up sometimes.  It seems like no one is going to care and sometimes the fight just doesn’t seem worth it anymore.  But then I look at these smiling faces who never give up, and like the song says, I need to get up again to see what’s next.”

    9. It feels like home this year: Apraxia Conference 2017

    “Have you ever stopped to think, and then believe, that one person, ONE, could change the life of hundreds; if not thousands, if not millions of others?”

    8. Whatever it takes: A day on the brink.

    “She’s finally in bed. I have the song “Whatever it takes” on again.  Tomorrow is a new day.”

    7. It’s like juggling 8 balls and desperately hoping one doesn’t roll away. 

    “Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.”

    6. It’s rare so no one cares? Prevalence of CAS.

    “Would it surprise you then if I told you the prevalence rates for Down Syndrome are 1-2 children in every 1000 births.  Sound familiar?  Maybe that’s just because I just wrote that figure for CAS.”

    5. “She’s a puzzle” or…she has dyspraxia.

    “I don’t want professionals to tell me she’s a puzzle.  I don’t want to know that she’s so unusual that her very being challenged your knowledge, or that you are confused by her.”

    4. No, not another diagnosis.  Adding dyslexia to apraxia. 

    “In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”

    3. The Hulk and Rousey on struggling to speak.

    “Everyone is handicapped either physically, mentally, or emotionally.  It’s all about maximizing what you have.  As a kid I had trouble speaking.  It’s all about overcoming adversity.”

    2. Apraxia, special ed, and grad school.  One woman’s remarkable tale.

    “Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.”

    1. The Problem with School SLP’s

    “They cannot “refer out” or “discharge for lack of progress” as an can be done in private speech. No, the school SLP is expected to figure it out regardless of the lack of resources, lack of funding, or lack of time.”

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  • 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!
  • 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.

     

  • “She’s a puzzle” or…. she has dyspraxia

    “She’s a puzzle” or…. she has dyspraxia

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    It’s no secret apraxia, dyspraxia, and developmental coordination disorder are not well known. Ask any parent, or heck, even any professional, and you will find out pretty quick few people really know what it is.

    Hey, I was one!  I was one of those professionals before my daughter was born. Here’s the thing.  I had my bachelor degree and masters degree AND my SLP CCC certification, and yet I had very few pages detailing apraxia of speech. Dyspraxia?  Developmental Coordination Disorder?  Pretty sure I never even learned those two terms.  My masters degree program taught us to research, but should I have really had to “google” to figure out how to treat a kid with apraxia?  Shouldn’t that have been addressed in school? Shouldn’t dyspraxia and developmental coordination disorder at least been given a shoutout like all the other rare disorders I had to remember including Fragile X and Rett Syndrome?

    I digress though.  THIS is why we need dyspraxia awareness week, this year October 8th through the 14th.  Oh, I should mention awareness week was started in the UK by the dyspraxia foundation.  I hope to carry it over here to the U.S., because just because my daughter lives here it doesn’t mean it’s any less prevalent. 

    When I took my daughter in for her first Child Find Evaluation, I remember the PT(physical therapist) telling me,

    “She’s a puzzle.”

    If you are a professional reading this like I was once, you probably didn’t think much about that last statement.

    “She’s a puzzle.”

    We all have one of those kids on our caseloads that we just can’t quite put our finger on exactly what’s going on; and part of the diagnostic process is testing a kid and finding out all the pieces to the puzzle to help develop the best treatment plan for the child.  Sounds about right.

    I can tell you though, hearing your child is a puzzle is quite frankly heartbreaking as a parent.  A puzzle is something you haven’t figured out yet.  As a noun, the definition of a puzzle is, ” a game, toy, or problem designed to test ingenuity or knowledge.” As a verb, the definition of puzzle is “to feel confused because they cannot understand or make sense of something.” So, with those two things in mind, think of how you might feel when professionals who treat children who exhibit similar problems like your child tell you “She’s a puzzle.”

    I don’t want professionals to tell me she’s a puzzle.  I don’t want to know that she’s so unusual that her very being challenged your knowledge, or that you are confused by her.  I mean seriously?  As I’m further on in this journey now, and as I’ve been able to talk to numerous parents nationwide who have a child with apraxia and dyspraxia, I can tell you she’s not a puzzle at all.  Her presentation, to varying degrees, is exactly the same presentation as other children with her disability.  This includes a high likelihood of sensory processing disorder and attention problems to name a couple. Despite this, I was still told last week by someone that her attention issues are a “puzzle.”  Sigh

    This fabulous research article probably puts it best in their opening statement positing,

    Dyspraxia is an enigma to many people, both professional and lay alike

    Enigma now!  It’s ridiculous if it weren’t completely true.  Dyspraxia IS an enigma to both professional and lay people alike.  Listen, the only puzzle, or enigma that I can see after being on this journey for about 5 years now is this.  It’s puzzling THAT PROFESSIONALS IN THE FIELD don’t know about apraxia and dyspraxia.  Now THAT is the puzzle.  I’m including myself friends.  I’m not exempting myself.  How is it, that according to some data it’s prevalent in as high as 10% of the population, yet my daughter is “a puzzle.”  There’s something wrong with that.

    A simple google search of dyspraxia, apraxia, and dyslexia though will reveal a list of symptoms that are exactly what my daughter has and experiences.  She’s not a puzzle at all.  She fits in all the little boxes of these graphics completely, like the one below. I could quite literally check every…single….box. I guess all the separate boxes resemble a puzzle, but if you put them together they all fit perfectly to complete that big box in the middle: dyspraxia.

    Ultimately though, this article is more than a rant.  This is a dyspraxia awareness post and this is what I want to see.  I want to see these disorders as understood and as well known as other relatively rare global developmental delays like Down Syndrome.  When a professional hears the word “Down Syndrome,” I can guarantee a list of characteristics common to those with DS will pop into their head.  There are always varying severities of course; but a professional is going to know what to expect and be better equipped to help them.

    I hope there is a day no other person with dyspraxia is told they are a puzzle or an engima and instead is greeted with, “Oh dyspraxia?  Okay.  We know exactly how to help you.”

  • Why you are the CEO and CFO in special needs parenting

    Why you are the CEO and CFO in special needs parenting

    A discussion in one of my groups the other day centered around the fact that parents of kids with special needs have to be the CEO on their child.  This extends beyond the idea that we are experts on our child.  The CEO, by definition, is in charge of making all management decisions.

    Parents of children with special needs have to be the CEO, and there is LOT to manage.

    Some days, it can feel unmanageable.  A CEO is typically responsible for the success of a company, which is no doubt stressful; but a parent feels they are responsible for the success of something even greater than a company……

    Parents feel they are responsible for the success of their child’s future.

    I know all parents feel this way about all of their children of course, including those with special needs.  However, the stakes are higher when you have a child with some sort of delay or disability.  A child with special needs is already starting life behind the eight ball.  A parent of a child with special needs feels intense responsibility to give them the best chance at a normal life, which is hard enough in this world without a disability!

    Parenting a child with special needs is a juggling act.

    When a parent has a kid with special needs, they spend their time not only at the pediatrician, but are bounced from specialist to specialist in many cases, just in an effort to get an actual diagnosis.  Kids with special needs in many cases have visited developmental pediatricians (different from regular pediatrician), neurologists, and psychologists. They have had blood taken, scans done, and more doctor visits to discuss results.  They have been poked, prodded, and examined more than the neuro-typical peer.  Their tiny bodies might have been subjected to sleep studies, sedation, and sometimes surgery.

    Therapy is always in the mix.  They may see occupational therapists, physical therapists, speech therapists, play therapists, behavior therapists, early interventionists, vision therapists and the list goes on.  Seeing a therapist always means another new evaluation, where this child who struggles anyway is subjected to tests and judgement calls as to their performance compared to typical peers.

    Obviously, there are only so many hours in a day and so a parent; the CEO if you will, has to choose  and prioritize many of the above listed appointments and even others not on this list.

    Unless you have been in this position, you have no idea how excrutiatingly difficult it is to decide which doctor or therapy your child needs most or more.

    Remember what I said before.  As a person making these decisions, the weight of your child’s future feels like it lay squarely on your shoulders.  Hopefully, you can get an appreciation of how big that weight becomes.

    Let’s not forget though, money.  All of these things cost money.  Insurance in many cases does not cover the brain scans, the MRI’s, the evaluations and the therapies.

    It causes a parent to become the CFO for their child as well.

    A CFO is responsible for the financial affairs.  Oh, and in the case of a parent with special needs, one doesn’t count on paying thousands of dollars out of their budget when they are starting a life with their partner, buying their home, and preparing for a new baby.  I had a supervisor tell me once at a private practice, no one can afford therapy, because no one counted on the huge hit to the budget these therapies, doctor appointments, and evaluations will cost your family.

    If you are lucky to get some sort of disability, Medicaid, or scholarship to help fund the cost; it’s not without another price.

    Time.

    All of these applications take an enormous amount of time.

    Parents need to gather required documentation, letters from insurance companies, doctors, evaluations, tax returns, and medical records to name a few.  A parent will spend hours filling out paperwork, spending time on the phone, and listening to hold music.  This time is well spent if a parent can get insurance to cover or get money to help with expenses; however, prioritizing time and finding time is not easy when we are shuffling our kids to doctor appointments and therapy appointments (see above).  This on top of finding time to put them in “typical” kid stuff like soccer or gymnastics and letting them go to birthdays like other kids do; in hopes that they can feel “normal” at least some of their childhood.

    If we are lucky, there are times we CEO parents find the perfect team.  We’ve got the diagnosis, the plan and team of therapists to treat it, and we see our child do the most amazing thing in the entire world……

    Make PROGRESS

    It’s probably the most beautiful gift in the entire world and in that moment; all the guilt, all the stress, all the worry, all the money, and all the time was 100% worth it.

     

  • No, not another diagnosis. Adding Dyslexia to Apraxia

    [wysija_form id=”1″]I had an epiphany the other day.  It came after reading an article someone sent me discussing how American schools are failing kids with dyslexia.   It was an excellent article and accurate in every way.  I started my career in Denver Public Schools in 2004, and at the time, an approach called “whole language” was being used to teach reading.  Just four years before this time, in 2000, my mentor (and now Ashlynn’s SLP) was telling me about the 2000 National Reading Panel Results that showed there were 5 components of reading that children needed to read, and whole language was missing many of them, particularly the two that had to do with phonological awareness and decoding.

    During my career in Denver, a special education coach named Robert Frantum Allen, came out and was training our intervention and special education staff to look at struggling readers and identify the component of reading in which they were having the most difficulty.  I remember the ones that were the most prevalent were in the areas of phonological awareness and decoding.  Many teachers weren’t even testing phonological awareness, and since the schools were using a whole language approach, it wasn’t getting taught either.

    I was in a Title 1 school, which in some ways is good because we get more funding to get more intervention teachers.  We had a great response to intervention system set up, with teachers hired to do 6 week intervention and track data on struggling readers.  The interventions included LLI (leveled literacy instruction) and Reading Recovery.  These were great programs for our ELL (English Language Learner) students, but for our kiddos who would eventually fall into special education, they weren’t helping at all.  I remember Robert stressing to us that these interventions would not remediate our kids with a reading disability (dyslexia) because they did not identify and then focus on the root cause of the issue, which in many cases was phonological awareness.  He believed 100% in an approach called Orton Gillingham or approaches based off this reading program.  In the school I was at, I had two Kindergarten kids come in with apraxia, and they THRIVED on an OG approach called Fundations.  OG has a TON of research and is in many cases considered the gold standard for reading intervention approaches.

    At the time, I didn’t have the research to back up Mr. Frantum Allen’s claims, but I had my professional experience which consistently showed our kids with a reading disability did not make growth in these reading intervention approaches; but the kids receiving an OG approach to reading did.

    I have never forgotten all the training and professional experience, but a little thing called apraxia kinda took over my life.  That is, until I read that article I mentioned above.  Everything I learned in DPS came flooding back, especially when I read the line that said one teacher said she didn’t learn how to teach kids how to read until she was trained in Orton Gillingham.  It went onto say many are now advocating for a “balanced approach” to reading as opposed to a whole language approach, but basically we are just doing a bunch of things that don’t work with some things that work really well.

    In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”

    In that moment, that article told me, “Laura, this is dyslexia.”

    I started to cry at the end of that article.  Damnit.  I missed it again.  I missed another OBVIOUS dx in my OWN daughter.  Why does this keep happening??  What good was all my training and experience when I’m not applying it to my OWN baby??

    Maybe it’s not dyslexia Laura.

    Oh no.  It is. It IS. How do I know this?  Ashlynn participated in a balanced literacy intervention over the summer.  She did make progress in some areas, but she just took the test at school and her scores were….the exact same.  It changed by 1 point.  Didn’t I say I SAW THIS EXACT THING in DPS when I worked there?  My kids with reading disabilities didn’t make progress with those approaches. I started thinking about how she still can’t rhyme (despite me working on it constantly), still has trouble identifying how many syllables are in a word (despite clapping them out since preK), has a poor working memory….I mean everything I KNOW she is struggling with correlates with dyslexia.  Look at my graphic at the way top.  Dyspraxia and Dyslexia and all those neurological disorders overlap.  But here we are, my daughter is in 2nd grade, and I’m just NOW seeing the writing on the wall. I think for so long I wanted to explain her problems were based on apraxia.  I was totally missing the forest for trees again.

    You know what else sucks?  Kids who have poor reading skills by 3rd grade usually remain behind until 9th.  I remember that chilling statistic because when you work in an inner city, the fear is that by 9th grade if a kid is still struggling academically, they will drop out.  Someone will have to put me in a grave first before Ashlynn drops out, but I remember being worried about the 4th and 5th grade kids I had on my caseload at the time.

    Oh and this is not to mention we have older adults now who have grown up to talk about apraxia such as Gage GoLightly who says she had dyslexia too, or Daniel Radcliff who had dyspraxia and dyslexia.  I know these disorders all have crazy comorbid prevalencies.

    So, long story short, is, I have Ashlynn on the 6-8 month wait list for the learning center at Children’s Hospital.  Yes the school could test her, but schools don’t dx dyslexia. I know this.  I work in one.

    I hired a tutor who will come 2x a week trained in OG.  I should have done this two years ago, just like I should have had Ashlynn in the right speech therapy a year before I did too.  If I can take any solace in any of this, it’s that someone reading my blog will learn from my mistakes.  It wasn’t too late for Ashlynn’s speech, and hopefully it’s not too late for her reading either.