SLP Mommy of Apraxia

Category: special needs parenting

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

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

    One day I was perusing The Mighty to see if any new apraxia articles had been posted, and I ran across an article by Kelsey Belk, a graduate student studying to be an SLP.  I was so inspired by her article I just had to reach out and thank her.  I found her on facebook and saw that she was currently attending the University of Northern Colorado! I live in Colorado! Can anyone say coincidence, and as a reminder, you all know I believe they are signs and so I took it as a green light to contact her.

    Kelsey, thank you so much for writing that article!  I plan to save it and have Ashlynn read it one day.

    Let’s start with what you remember about speech therapy? When did you know you had apraxia?  Do/did you have any co-morbid disorders aside from apraxia?

    I was diagnosed at age 2 with apraxia. I also was diagnosed with SPD and dyspraxia in my early toddler-hood age as well. In late elementary school I was diagnosed with ADHD and Oppositional Defiant Disorder.  As I am getting older I keep getting diagnosed with more psychiatric and learning disorders. I really want to do research on the possible relationship between childhood apraxia and a later diagnosis of psychological conditions!

    What was your school experience like?  Could you tell us how you did academically and if it affected you socially?

    I have always been a very highly motivated student and am a huge social butterfly – I actually cannot stand the idea of being alone. In elementary school I did rather well with the accommodations the school provided. It wasn’t until later that I realized how big the gap was between my peers and I, especially in reading and writing for me. In high school I started to receive worse grades and this really negatively affected my self-esteem because I didn’t understand why. I felt like I was putting in double the effort than my friends, but always got worse grades. This is when I went back to get more accommodations and was re-evaluated and was told I had all of the same results as a severe dyslexia case, only was able to read rather fast therefore my poor decoding/reading/spelling/phonological awareness was tied to my apraxia. Ever since then I have been receiving extra help such as a note-taker in class and all my books on an audio file. It is not perfect, especially in college. Most of my peers will skim read, but I cannot do this and have to sit and listen to the entire 100 page textbook chapter – but it still makes it much easier than without the accommodations. Overall I have been very successful in school, but it has definitely been a huge struggle.

    My social life is more difficult to describe due to some of my co-morbid diagnoses that affect social relationships. In elementary school through high school I had amazing friends, although seemed to change friend groups frequently to find these friends. However, I also had really negative relationships. I was terrified to talk to adults because they could never understand me – which affects me to this day. Kids were always carefree and often did not even notice a difference. I did have some bullies though – I remember particularly having kids make me repeat things I could not say (like rabbit and railroad). I did really well to not let this get to me though! When I got to college I met all these new people from all over the world. This led to more issues with people not being able to understand me, and I often got asked “where is your accent from?”. I never had an issue making friends growing up or now, but I do have issues with some of the less accepting people. But, it showed me who the good people were and has allowed me to make amazing genuine friends that I may not have found otherwise!

    How has apraxia affected your life?  Do you still have residual struggles?

    Apraxia has definitely shaped me to be who I am.  When you have to put in so much effort just to play “catch-up” at school, it will definitely change you. I had one speech therapist that I loved, but many I did not like which made me not like school on speech days. It has affected me academically and socially, as described above. I am lucky to have had great support systems growing up that allowed me to succeed academically and made me want to go to college. I know that this is not the case with many special ed kids, because you just get so burnt out. It is exhausting to act “normal”. Even to this day I don’t think my professors understand that half of my cognitive energy goes to my talking clearly, focusing, and reading – so in class when I have to take breaks I really need them. I get home completely exhausted everyday, and then have to focus on homework. People forget that disabilities don’t disappear, and it is a constant struggle. I definitely have residual struggles, like mentioned I get asked where my accent is from or I am asked to repeat myself often. Most noticeably, it is in my reading or SLP tasks, because that is what I am studying. Apraxia has greatly affected my self-esteem – I refuse to talk on the phone, get defensive quickly about my speech, and still get scared to make presentations/talks. Last year I decided to go back to speech therapy to try to fix these speech errors, and made some progress on the ‘ai’ vowel however I am to the point I am just going to accept these speech errors as part of me.

    What made you want to become a speech/language pathologist?

    I always wanted to work with kids, but did not really want to be a teacher. I became very interested in this field and just stuck with it! I particularly love the Deaf/hard-of-hearing population. I think it is great to help someone communicate – as social connections are so important. I also have felt that the current model is not often what is best for the child – and I hope to change that. I feel like this field overlooks mental health way too often, even though it is so hard being a child who is different. I hope to work to combine the two fields more to help children succeed in every part of their life – most importantly making them feel valued and happy. I also think we often assume that children need to be like ‘us’ – look like us, talk like us, walk like us, etc. I don’t think this is always the case. I think it is important to see the child as an individual and help them succeed in the modality best for them. For me, I need accommodations such as audio books – no amount of therapy would fix my problems. For some kids this may be ASL or an AAC even, so I hope to change the view so speech therapy is actually centered around the kid.

    My daughter is 7 and currently struggles with what seems like every motor task.   What advice would you give her and all the other kids who struggle with apraxia and related learning disorders?

    I think it is important to not compare yourself to others. The school system is set up to where everyone is pressured to be at this perfect level – but that is not real life. In real life everyone has strengths and weaknesses. I know that I will always have weaknesses in these areas – and it will always come back (such as driving – it is so hard!). But, I also have learned to find my strengths – which are ones you probably share. I learn to persevere – when someone tells me I can’t so something I work as hard as possible to show him or her I can. I am creative – having disabilities makes you find new and creative ways to complete tasks. And most importantly, I gained strength in having empathy. This one seems so simple, but is one so many people lack.  Just remember to never give up – I did. I dropped out of speech in 6th grade because I wanted to be normal and I regret it. In the words of Taylor Swift, “haters are gonna hate hate hate”. Don’t let other people get you down, do it for yourself! Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.

    What advice do you have for parents?

    Accept your child for who they are. Yes it is good to practice correct motor tasks and speech at home, but also remember they are kids! They need a break and need to be able to talk to you without being corrected. Find a balance between the two. Let your child make decisions too – explain the IEP to them and let them give their important in what they want to learn and work on. And do not be ashamed to seek out mental health help (if needed)! There is absolutely nothing wrong with therapy; it can help your child grow in self-esteem and self-confidence. Also remember to not put all the pressure on yourself, you child goes to an SLP/OT/PT/specialist for a reason, just enjoy being a parent!

    There is so much good advice in here Kelsey! Thank you so much for your candor and honesty.  You sound so much like my daughter.  She’s a huge social butterfly too, and works harder than everyone else around her.  You give me so much hope for her!

     

     

     

     

     

     

     

  • 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.
  • Neurology, delays, a dream, and a miracle.

    Neurology, delays, a dream, and a miracle.

    Most parents of kids who have a child with global apraxia will at some point visit the neurologist.  It’s usually before the age of 7, which is the age Ashlynn is today.

    I remember the referral, although the dates are a little fuzzy.  We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens.  Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard.  Really hard.

    Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it.  The pediatrician, knowing I was in the profession tread lightly.  The result though was a possible referral to the neurologist.

    I declined.

    So curious to me now.  Why did I decline?  Why wouldn’t I have at least gone to the appointment?  The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit.  I pounced on the cop out and religiously massaged her calves every night.  By the time of her next visit, her heel cords were looser and she could flex her foot.  I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral.  Of course I said no.  I could help her.  I could do this.  I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t.  We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.

    Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist.  I actually would have went sooner, but our insurance sucks!  I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do.  We have her in all the right therapies, I would wait when maybe my insurance would get better.  This past year I switched the kids to my insurance plan.  It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.

    Ashlynn’s “ballerina toes”

    The appointment itself was good.  She took our case history, and did an exam on Ashlynn.  She was a lovely
     person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues.  I was so proud.  I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress.    I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.

    She was a resident, so she went to get her supervisor for the final conclusions and recommendations.  The supervisor came in and examined everything she missed.  I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate).  She didn’t say this aloud, but I knew as an SLP that was what she was examining.  They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing.  I nodded my head.  It’s what I was expecting.  I know many, many kids now in the apraxia world and this is the next step.  We want to see if there is an actual cause we can pinpoint for all the motor planning issues.

    Then, this.

    “We would classify her at this point as a developmental delay (insert loss of breath.  Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”

    I just stared back at them.  I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level?  They heard her talk, ok.  They have my case history, ok.  I wouldn’t put her at a 4 year old level based on that.

    “Does that sound about right?”

    I kept staring.  Her dressing skills.  They asked me in detail about her personal care, adaptive skills we call them, and, oh yes.  Yes.  She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….

    “Ms. Smith?  Does that sound about right?”

    I nodded my head.  I couldn’t get any words out.  It felt cruel.  It’s not their fault, it is just the way these appointments are.  I thought of Ashlynn’s four year old brother on the way out.  He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.

    I looked over at Ashlynn holding my head walking out of the hospital.  She was smiling holding my hand, and holding a notebook and pens in the other hand.  Always working that girl.  ALWAYS.  During the appointment she “took notes” for the doctor and gave them to her at the end.  The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level.  Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude.  I wanted to cry, but I won’t.  That’s not to say I’m against crying.  It’s just to say it’s not how I want to process it all.  I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.

    I turned on “The Fighter” by Gym Class Heroes.

    “Just waking up in the morning
    And the be well
    Quite honest with ya,
    I ain’t really sleep well
    Ya ever feel like your train of thought’s been derailed?
    That’s when you press on Lee nails
    Half the population’s just waitin’ to see me fail
    Yeah right, you’re better off trying to freeze hell
    Some of us do it for the females
    And others do it for the retails

    But I do it for the kids, life through the tower head on
    Every time you fall it’s only making your chin strong
    And I be in the corner like mick, baby, til the end
    Or when you hear this song from that big lady”
    One last thought.  My dad has never been a dreamer and he certainly did not encourage us to dream.  He encouraged us to work, stay out of debt, and have a plan B.  He’s a practical man.  I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out.  Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life.   That’s why it was surprising the other day when my mom called me and said,
    “Dad wants to know if you know what Ashlynn’s name means?”  Seems like something I would know.  I didn’t know though.
    “No, what?”
    “To Dream,” she responded.
    We both paused.
    “Wow” I managed.  “Dad told you to tell me that?”
    “Yes.”
    I was silent.  Honestly it was hard to process.
    “He told me the other day too, Laura, he believes Ashlynn will be a miracle.”
    Silence.
    “Wow” I managed again.
    So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”
    So work baby girl, and I’ll work alongside you;  but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.
    My dad with four of his grandchildren including Ashlynn
    To read more from SLPMommyofApraxia follow her on facebook, pinterest, or twitter.
  • The problem with school SLP’s.

    The problem with school SLP’s.

    I only realized after being a part of the special needs community that school SLP’s have a bad rap.  Like a really, REALLY, REALLY bad rap.  

    I’m preparing a talk next month for Colorado school SLP’s, and every time I prepare a talk for this demographic, I have to tell you they have a special place in my heart.  No, it’s not just because I started as one and work as one part time, but it’s because I have literally worked under, with, and around many, many, MANY of them. I have worked with so many of them, and I can tell you they are a jack of all trades.  They are the EXPERT in eclectic, and may be the ONLY person in the school who understand in depthly just how a student’s unique communication challenges actually affect them in school.

    In the schools, you don’t have the option to specialize.  Kids from every disability show up on your caseload and you are expected to be the expert.  It might be hard to understand as a parent, but there are soooo many different disabilities and speech and language disorders, and a parent (rightly so) expects the SLP to do right and best for their baby.

    Every single SLP I know and have met has a desire in their heart to help children.  Please, let that sink in.

    When I took Ashlynn to her first private SLP who had never worked in the schools she was asking me about qualification.  She asserted that she could never be a school SLP because she felt it was unethical to not qualify students who clearly had some sort of speech or language problem.  I had a hard time refuting her.  Aside from saying qualification is different in the private versus educational sector, I really had no excuse.  I know that funding is limited in the public sector so that obviously plays a part in qualification.  I also know if every SLP took her stance, than NO kids would be serviced in the public schools, and is that really what we are going for?

    Public school SLP’s have caseloads that are probably double if not more of the private SLP.

    Where the private SLP can see kids 1:1, school SLP’s rarely have that luxury.  With weekly caseload averages around 45 to 55 and some maxing out at 90 (Yes 90 people I’ve seen it), even the most skilled SLP will not be able to do what a private SLP can do 1:1 for 45 minutes (though they will kill themselves trying).

    The result?  Parents become outraged at the lack of progress or progress they feel the child should be making. They surmise the school SLP just isn’t as good as the private SLP and they become disillusioned and write them off.  They post memes about preparing for battle when going into an IEP meeting! This honestly breaks my heart.  I feel bad for the parent who feels the SLP doesn’t care, and I feel bad for the SLP who is trying to manage an unmanageable caseload, writing IEP’s at night, or staying up until 2 Am (true story from an SLP I just talked to last week) to write a lesson plan, only to be ravaged by a parent unsatisfied with the results.

    I’m not sure if everyone is aware of this, but ANY SLP in ANY setting is as qualified as the next SLP by basic certification standards.  What does that mean?  That means, as long as an SLP received their masters degree and the Certificate of Clinical Competence (CCC) through ASHA they can work anywhere.  So that means, your school SLP can apply for a job at Children’s Hospital right now and probably get hired tomorrow (because in case you didn’t know there is an SLP shortage as well).  For some reason though, there is this perception that the school SLP just isn’t as good as the private SLP.  If it’s true, it probably has MORE to do with caseload and workload size than it actually has to do with the qualification of the SLP.

    I get calls and emails all the time from concerned school SLP’s desperate to meet the needs of their kids with apraxia but not knowing how.  They want to see the kid more, or see the child 1:1, but their caseload simply does not allow for it.  They cannot add more hours to the day, yet they still call, or write and wonder if there is something they have not yet thought of.  Oh, and here’s a dirty secret.  Listen close.

    Are you listening because this is VERY important.

    If an SLP feels in their heart a child needs private, supplemental speech services, they CANNOT say it.  People, they CANNOT tell you this.  Why?  Well, their license and job is on the line.  In most cases, school SLP’s are told not to recommend any sort of outside therapy.  Why do you ask? Why?

    I’ll tell you.  If a school SLP recommends outside services, the parent can sue the district and win, and potentially disbar an SLP from ever practicing again.  Are you asking why again?  I’ll tell you.  If a school SLP recommends outside services, they are essentially saying that the child can not benefit or make progress from the therapies provided by the school, and the school is required by law to show progress.  If the SLP recommends outside service thereby saying the school is inadequate, the school gets worried or they will get sued for not providing adequate services and the SLP potentially fired.

    Would you take that risk?

    I’m not saying unilaterally every school district would do this, I’m just saying, school SLP’s are told this is a possibility, and so they would find it best not to recommend outside services.

    You need to know this as a parent of a child with any disability.  Some SLP’s will risk their professional license and recommend this to you.  Let me  tell you though what they are risking.  They are risking 4 years of a bachelor degree, 2 years of a masters degree, 1 year of a clinical fellowship, and the usually 3 years of probationary status as a teacher.  That is an entire decade of work and dedication to a profession they love and believe in.  Would you take the risk then to recommend a parent pursue outside therapy?  This is where they are at!  It is truly a catch 22.

    If you are upset about your school services, you probably have every right to be!  I was VERY unhappy with Ashlynn’s preschool, in-class only, speech/language services.  However, it is important to place the blame on the right entity and in most cases I can assure you it is NOT on the school SLP’s shoulders.  In Colorado, the Colorado Department of Education mandated an inclusion model only of special education services in preschool thus making it extremely difficult for any school SLP to pull a student out into a 1:1 session.

    My message today is this: School SLP’s are some of the most phenomenal group of people I ever have the honor to speak with or to. They do not get the option to specialize, and so they pursue advanced training and expertise in every disability that may affect communication: from Apraxia to Angelman’s Syndrome, from Developmental Delay to Down Syndrome, from Cerebral Palsy to Stuttering, from Language Impairment to Nonverbal Learning Disability, from Assistive Technology to Autism, from Auditory Processing Disorder to Articulation Disorder,  school SLP’s will see it all and be expected to rise to the challenge.  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.

    They will be faced with limited or no space, they will be strapped with high caseloads, and criticized by parents; yet they will persist and pursue only becoming better for it, because of their love for the children and the profession.  I personally have witnessed it time, and time, and time again!

    I can tell you firsthand, getting into graduate school for speech/language pathology is VERY difficult.  It is highly competitive, and here in Colorado, the average COLLEGE GPA was a minimum of 3.87 when I applied.  I found this graphic from 2011 but I can tell you things have not changed much.  There is a HUGE gap between the number of applicants and the number of people selected. 

    The disparity should be striking, and please remember that MANY of these applicants will be YOUR school based SLP.  If you have the mentality that “C’s get degrees” and you are certain your school based SLP fits the latter, let me correct you.  NO average C students make it to graduate school in the first place for speech/language pathology.

    Truth

    For my final thoughts I wish not to be adversarial.  I hope that this article has persuaded you, a parent OR SLP, to reach out to the other side and bring about the change you wish to see.  I have the unique perspective of being on both sides, and as such, I have the utmost RESPECT and LOVE for both sides.  I truly wish for there to be a conduit of communication, and not a  ridge of animosity and distrust; and at the the forefront, I wish to impart a spirit of solidarity between my professional and special needs relationships.

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