SLP Mommy of Apraxia

Category: special needs

  • 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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  • 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.

     

  • You know you need awareness when you know more than the “experts.”

    You know you need awareness when you know more than the “experts.”

    About a year ago I switched insurance from my husband’s to mine, in order to leave no stone left unturned.  I know that kids with apraxia can have some sort of positive indicator on a brain MRI, or genetic marker.  I had yet to do any of that testing, and so I decided this was the year to do it.

    My husband questioned why.  Is there a reason to know? Will it change anything?  Well, in some very small cases, people have discovered things that have been helped, but most likely the results would not yield anything.  My husband again questioned why.  Would it change the treatment plan?  Therapy plan?  Long term prognosis?

    “Probably not,” was my reply, but honestly, I just had to make sure.  I have to look in her eyes every morning and every night as she struggles through every daily living task and educational task. I have to pray most days to check my patience because many things she does is not her fault.  So yeah, I also have to be able to look at myself  reflected in her adult eyes someday and tell her with complete honesty,

    “Ashlynn, I did everything I knew in my power to do, to help you.”

    I have to be able to say that.  Yes it cost thousands of dollars and I’m on a payment plan for those medical bills now, but it’s worth it.  Everything came back negative and it’s STILL worth it.

    I’m not here to cry and moan though.  If you have a child with apraxia you are just as much in the hole as me.  No martyrdom here.  What I DO want to talk about though, is neurology.

    I went to the Children’s Hospital of Denver.  Well respected, popular hospital.  I took her to neurology and the first appointment went exactly as expected.  Exam and then orders for an MRI and genetic testing.  Pretty standard with Ashlynn’s presentation.  We only found out our neurologist was a resident when the supervising doc came in for a review.  Nice.  I guess it’s no big deal, but it would have been nice to know our appointment was with a resident. Maybe that’s not common, I don’t know.

    The second visit was a follow up visit.  I already knew the MRI and genetic testing didn’t yield anything remarkable.  I was there to see what their dx would be.  Our resident neurologist did her exam and then a different supervisor came in. She did a few things with Ashlynn, and then, as though I wasn’t even in the room she proceeded to tell the resident that “she doesn’t have apraxia” among other things.

    I think I sat in my chair in the twilight zone for a minute.  My head shifted back and forth between the two as I struggled to process what had actually been said.  Did that woman just say Ashlynn doesn’t have APRAXIA???

    “Um…wait.  Yeah, I’m sorry.  Did you just say she doesn’t have apraxia or oral apraxia?  Ask her to close her eyes on command.  She can’t.  Ask her to spit out some water…she can’t. Ask her to smile on demand, she can’t.  Oh, and if you don’t hear her speech apraxia, I am more than able to take you through a motor speech exam quickly.”

    The supervisor did many of the non-speech things I recommended.  She saw, as I said, Ashlynn couldn’t do them.  She then looked at her resident, again as though I wasn’t in the room and commented, “Oh, is this the SLP?”

    “Yes, I’m an SLP that specializes in her disorder,” I responded for the resident.  “Would you like me to take you through a motor speech exam?” I reiterated.

    She told me that wasn’t necessary and changed the subject to the next course of action.

    People.  WTF?

    You ALL know just as well as I know that if I WASN’T an SLP, that neurologist would have told the parent ASHLYNN doesn’t have apraxia.

    Ashlynn has been in therapy since before 3 and has a mom as an SLP!  She is now almost 8!  My God, I would HOPE she has improved.  WTH is wrong with people??  This is a DOCTOR for CHILDREN’S HOSPITAL NEUROLOGY.

    Sigh

    This is why I say and will ALWAYS say, you the parent are the expert on your child.  It sucks right now because parents seem to know more about apraxia and dyspraxia than experts.

    I have a client who has a son with apraxia and dyspraxia.  Apraxia was officially dx by me, so she asked where she should got to get the dyspraxia dx.  I recommended a neurologist.  She found herself at Children’s Hospital too.  Different neurologist.  She point blank asked if her son had dyspraxia and his answer was,

    Do I look like a therapist?

    My dear readers, therapists don’t diagnose dyspraxia or developmental coordination disorder!!!  It’s a DOCTOR who does this.

    I absolutely hate that we as parents know more than the professionals, but you guys, we do.  I say that AS a professional too. That is why awareness is so important to me, but right now we have to be the experts on our children!

    Don’t stop.  Don’t accept any “expert” opinion just because they are an “expert.”   Don’t be afraid to ask questions.  Dig for answers.  Listen to your gut, because you DO know your child better than anyone.

    Advocate.

    Don’t blindly accept “expert” opinion.  Value your own.  You are a parent and that makes your an expert on your child.

    Remember that.

  • What is Adam’s Camp in Colorado?

    What is Adam’s Camp in Colorado?

    I have known children who have attended Adam’s Camp in Granby, Colorado; and usually their needs were related to Autism, Down Syndrome, or Cerebral Palsy.  It has an incredible reputation. Children who have attended this camp during the summer, have a full packet of goals and progress written by their therapists to take back to their school district and private therapists for the coming year.  It is always a very impressive bunch of paperwork.  I had never considered sending Ashlynn until I talked to a mom of a client of mine who has global apraxia and who has been attending now for at least 3 years.

    The kids attend a 5 day camp in the mountains at a YMCA in Colorado, and they have therapy every day with a  team of therapists that include: speech, OT, music therapy, art therapy, and a SPED teacher.  In addition to this multi-disciplinary team approach to therapy, they go on fun outings that include: canoeing, swimming, tubing, horseback riding, and rock wall climbing.

    I couldn’t wait for Ashlynn to have this experience.  They have different weeks tailored to different disabilities.  The global developmental delay group was full, but they found and opening for us on Down Syndrome Week and said there would still be kids with other disabilities.  I was a little hesitant, only because Ashlynn doesn’t have Down Syndrome.  lol.  However, Ashlynn doesn’t really fit in anywhere.  She has these major needs that require all those therapies, but she doesn’t have DS, or Autism, or CP.  I said yes.  Honestly, humans with Down Syndrome and Ashlynn have a lot in common; namely, their above average emotional intelligence.

    So here we were!  I rented a campsite because it was cheaper and had my husband haul our travel trailer up here, set us up in the campground, and then he drove back down to Denver to go back to work.  I didn’t realize it, but this campus is HUGE!  I NEEDED a car.   I hitched a ride the first day and then had my parents bring up a spare for me to drive while I was here!  It was quite the drama getting settled!

    Adam’s Camp was founded by a woman who had triplets back in the mid 1980’s.  One of them died shortly after birth, one of them, Adam, had CP, and the other was a typically developing child.  She felt the need to have a camp where all therapists came together to treat the child, but she also recognized the unfortunate and unintended negative impact on a sibling to a child with special needs.  They truly get the short end of the stick.  So, Adam’s Camp has an amazing siblings camp that is reasonably priced staffed by excellent, experienced teachers who are nothing short of A-MAZING.  Let’s put it this way.  I was more worried about my neuro-typical son at camp than I was Ashlynn!  He is very challenging and pushes every boundary. Also, he is very independent, opinionated, and moody; so if he doesn’t like something, we ALL are going to hear about it!

    My worries were completely unfounded.  Both kids had an AMAZING experience.  Absolutely exceeded ALL expectations.  I cannot say enough about this camp.

    Jace’s sibling camp was more than just fun.  It was therapeutic for him as well.  Kids get to talk about their difficulties and hardships within the family dynamics as part of their “therapy,” and then they also get to do super fun outings.  Jace did most of the things Ashlynn’s camp did plus roller skating, go-Karts, and more.  My son got therapy at a summer camp for being a sibling to kid with special needs….like how groundbreaking and amazing is that???

    Finally, parents’ emotional needs and well-being are also factored in and considered into this experience.  Adam’s Camp sets up a variety of parent activities that they offer for free, including a parent’s night out!  So many parents of kids with special needs find childcare hard.  Their marriages suffer and they don’t get many opportunities to be just a couple again.  Adam’s camp recognizes this as well.

    They really, REALLY have their pulse on the entire familial dynamic related to having a child with special needs and do their best to provide this amazing and holistic approach to every member of the family.  I’ve never seen anything like it honestly.

    I can’t wait to write more about their experiences.  I can’t do it all in this one blog post.  Long story short though, is if you can go to Adam’s Camp, DO IT.  More to come.

    Professional and FREE photos taken as part of the experience.
    I love you both with a love that has no bounds. I would breathe my dying breath for each of you. I know you have special challenges that each of you face, but I hope you also know you never have to face them alone.
  • Apraxia would have destroyed me

    Apraxia would have destroyed me

    I often think about what would have happened had it been me who had apraxia, dyspraxia, SPD, dysarthria, and a learning disability when I was young.  It’s pointless I know, but I was/am a perfectionist.  That’s not a good thing.  I learned early I was really good at spelling, reading and writing, but math I had to work for.  I won a math award in 3rd grade and I looked at the teacher, Mrs. Plummer,  like she was crazy.

    “I’m not good at math.  Give this to Keith or Jimmy.”  She maintained I was good at math, but I didn’t believe her and I never cared about that award.  I knew what I was good at, and it wasn’t something I had to work that hard to do well.

    I think about that because Ashlynn has to work at everything to do well.  There’s not like one thing that comes naturally to her….well actually social skills do, but she’s behind in that too only because of her other issues.  I had to work at math so it made me mad and I didn’t want to try, despite the fact I could do well.

    Her disability would have destroyed me.

    She has the best of my husband’s personality THANK GOD.  She doesn’t get embarrassed, she attacks everything, she’ll try anything, and she’ll never give up until she conquers it.  That’s a page straight up out of her daddy’s book.  She’s in a first grade performance Tuesday, and I was watching the practice with the art teacher.  I said the songs were hard for a kid with a speech problem (bear necessities, supercalifragilisticexpialidocious) and the art teacher smiled and said she loves Ashlynn because she just goes for it.  I smiled.  It’s true…she does.  She always has.  I can still cry thinking about her preschool observation where she couldn’t jump on the trampoline so she smiled and marched instead.  All the kids were encouraging her to jump like them….

    and she couldn’t bear walk so she hung across a teacher’s arm upside down to at least get a feel for the movement….still smiling.

    When she rode her tricycle and couldn’t pedal she never stopped trying……and not only trying, but smiling. Oh, and guess what.  She learned all these skills eventually, on her own time.  She walks, she runs, she jumps, she bear walks, she skips!  She puts me to shame.  She puts that third grade girl who decided math wasn’t her thing to shame.

    Well not anymore.  I’m not sure anyone becomes a parent to be inspired by their child, but she has inspired me and made me better.  There are things I do now I would have NEVER attempted.  Every time I’m scared or nervous, I think about Ashlynn.  One year on a camping trip everyone was cliff diving.  I was terrified as I stood on the cliff, but I thought of Ashylnn and I’m on video jumping and while I’m in the air you can hear me say “for Ashlynn.”

    Tonight we were watching “Zootopia” and a song came on “Try Everything.”  Ashlynn started clapping and dancing around the kitchen.  She always dances like no one is watching.  Isn’t that phrase people have to try and follow?  Well, Ashlynn just lives it.  It’s her essence.

    So I started listening to the lyrics and I’ll be damned if this isn’t that girl’s theme song.  I downloaded it immediately.  (I’m also admittedly a Shakira fan so I was hooked anyway).  We put it on outside and her AND Jace were going crazy.  It’s a great song.

    “I messed up tonight, I lost another fight
    I still mess up but I’ll just start again
    I keep falling down, I keep on hitting the ground
    I always get up now to see what’s next

    Birds don’t just fly, they fall down and get up
    Nobody learns without getting it wrong

    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail
    I won’t give up, no I won’t give in
    ‘Til I reach the end and then I’ll start again
    No, I won’t leave, I wanna try everything
    I wanna try even though I could fail

    Look how far you’ve come, you filled your heart with love
    Baby, you’ve done enough, take a deep breath
    Don’t beat yourself up, don’t need to run so fast
    Sometimes we come last, but we did our best”

    So many times she has come in last but she gets back up and tries again. As a witness to this strength I have no choice but to do the same.  Look how far you’ve come, but don’t keep looking back.  Look up and I’ll walk next to you guys through anything and I’ll pick you up when you fall.

     

  • It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    There is not one day that goes by I don’t think of Ashlynn’s disability (ies).  As a basis of comparison, I have my four year old son.  He has some concerning behavior issues, and I do think (worry) about them often; however, I do not think of it EVERY SINGLE DAY.

    Apraxia and dyspraxia make that impossible.  There is always something else to worry about.  Something else in which I don’t feel like I’m doing enough.  Let’s take speech.  Her speech is intelligible (hallelujah praise Jesus my baby has her voice); however she also has dysarthria, which makes her overall speech slower, and she has a language processing problem heaped on top of that, which makes it extremely difficult to express herself, even though when she does you can understand her now.  She also has a lisp, which is pointless to work on right now because she doesn’t have her two front teeth.  That will wait, but it’s still on the  “to do” list.

    Oh, but then there is dyspraxia and it involves motor planning issues with gross and fine motor skills, which in turn, affect ALL of her ADL’s (Activities of Daily Living). This includes: dressing, toileting, feeding, hygiene, getting her shoes on the right freaking feet, putting on her pants that aren’t backward, brushing her teeth without it ending up all over the counter, or showering and actually coming out of the shower cleaner than you went in.

    I make her do all these things first independently, despite it taking 3x longer than her brother who is almost 3 years younger.  It would be so much easier to just get her dressed or brush her teeth for her, or shower her;  but I know with motor planning, EVERYTHING is going to take about 1000x more repetitions and because of that, I can’t let her slack.  I can’t do it for her.  I have to watch her struggle and sometimes cry for me to help her, and force her to do it because I know she can.  There are nights it breaks my heart when she begs me to just help her put on her shirt and I tell her no.  I tell her no for her own good.  I know it’s hard, but the brain has more plasticity now and she has to learn how to do these things, and the only way to get better is to do it herself over and over and over.

    I think about stuff down the road.  How the heck is she going to ever be able to do her hair?  She can brush it, but how do I teach her how to get it in a hair tie?  These things will never come easy for her.  She can’t even put a headband on straight. Should I buy a bra for her now and have her start practicing?  The list goes on and honestly, at times, it seems endless.

    I attended an executive functioning training recently, and many kids with global apraxia are going to have issues with executive functioning.  They just are.  Ashlynn is one of them.  There are things to do to help. A lot of things actually, but they need to be put in place.  A lot includes visuals, visual aids, etc.  I sat through the entire training thinking about application to Ashlynn (I was there to apply it to my students in the classroom).  I started stressing that I’m not teaching her these skills and if I don’t, there is only so much the school can do and she will be a mess as an adult.  I need to start working on that.

    Oh..but she has homework, and we need to work on that too because like with everything else, she needs about 1000x more repetitions than a peer and we are the only ones to help her get those reps in.

    Seriously, I just don’t know if there are enough hours in the day. I texted another apraxia mom and I knew she would get it and wouldn’t judge me.  I was right.  She responded,
    “There isn’t a moment that passes.  I hate how consuming it is.  I sometimes feel paralyzed by it.”

    She reminded me that our kids our capable, but they require the BEST of us constantly to be successful.

    She’s right.  All of it.  So here we are.  It’s all consuming. I said not a day, but she’s right, it’s not a moment passes without being reminded Ashlynn has global apraxia.  It’s not one area that’s affected.  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.

    That’s not to downplay all the kids who have one or a couple of these problems, but it is to say that each problem adds an additional weight to my shoulders and sometimes it feels like I’m juggling 8 balls in the air and working desperately not to have any fall and roll away.  How do I keep them all in the air?  There is no answer….there is only what Michelle said…this disorder requires the best of us and not just sometimes, but CONSTANTLY so that we can be sure our children our successful.

    Taking pictures for a visual schedule to remind Ashlynn of the steps to going to the restroom.