SLP Mommy of Apraxia

Tag: speech/language pathology

  • Instant connection with “Ben”

    So, I went back to work this past month.  As I was going through my new caseload and reviewing files, I came across a boy I’ll call Ben.  Ben was a nonverbal Kindergarten student in the Spanish classroom with above average intelligence.  Ben had suspected Childhood Apraxia of Speech.  The SLP who was substituting for me, wrote me an email saying, “he has no motivation or desire to communicate right now. I think he doesn’t really understand how powerful it can be for him. He can also be very sensitive and shut down at the slightest moment.”  Various assisstive technology devices had been trialed, but he showed no interest in using them beyond a therapy session.  The substitute SLP also told me the teacher hadn’t been really helpful.  I consulted with the special education teacher who also reported that Ben seems smart, but doesn’t talk in her class either, but that she keeps trying.

    Of course, I had to see Ben right away.

    I walked into the classroom and interrupted a reading group to pull him out.  The teacher, I guess not wanting to interrupt her group, snapped her finger at him toward me.  He immediately came over and hugged me.  Ben had never met me, or seen me.  Sometimes though, I think there is just an indescribable connection that occurs between two people, and this was one of them.  I instantly loved him.  We made are way down to my room and he avoided eye contact and as promised, didn’t talk.  Once we got to my room, I brought out a beach ball.  I wanted to see if he would try and imitate at least a sound, and I picked ‘b’ since that is what his name started with.  We tossed the ball back and forth for a few minutes, until I stopped and told him I wanted him to try and say ‘b.’  He whispered it, but I took it.  As we played more, we were laughing, and I kept saying “ball” and telling him to turn his voice on.  He finally did!! I high – fived him, and praised him.  He just beamed.

    I got out some simple CV Kaufman cards.  For those of you not familiar with these, these are cards designed by Nancy Kaufman, who is considered an expert in apraxia.  We started with some simple bilabials (p, b, m).  He just imitated the mouth postures at first, but I praised him and told him that was exactly how you make them.  Now he just needed to add sound.  He did shortly after.

    After I took him back to class, I decided to change up his IEP.  This kid was getting 30 minutes in the classroom and 30 minutes pullout.  I called the parents to arrange a meeting so I could see him for a short time everyday I was there.

    Ben is my little buddy.  I love picking him up.  I look forward to seeing him everyday I go to work.  I’m pretty sure he feels the same way, because when I enter his classroom his eyes shine and he waits in anticipation until I call his name and then comes running.  I promised him I’m going to help him, and I will.

    The following week, the special education teacher came running in my office after school.  She asked me what I had done to Ben.  Concerned, I hastily ask her what was wrong?  She smiled and replied, “look at this probe.”  It was a paper with upper and lower case letters arranged in varying order.  More than half of the letters had checks over them.  She informed me that a month ago, Ben didn’t attempt to say any letters or sounds, but today, he said, or at least attempted over half!!

    The next week she came in my office and told me Ben is now doing choral reading with her during group.  This means that he will attempt to read along with her simultaneously.  My heart smiled so big.  “Thatta boy Ben,” I thought, “I knew you could do it.”

    Since then, we are immersed in full on motor based therapy.  He is so motivated and I am so proud of him.  During therapy, he sometimes holds my hand and looks up at me with these shining brown eyes.  I can’t wait until he can say what he is thinking.

  • Private speech evaluation

    I have been antsy since the poor and disappointing experience I had in the school district.  Poor Ashlynn has once again been subjected to constant therapy all day long.  In addition, I couldn’t stop thinking that I still have a month until she starts school and therapy, and then it might be another month or more after that to “give the therapist a chance.”  We could potentially be losing two months of valuable time that she could be working on speech!

    A thought came to me in the middle of the night, when my mind was racing once again with how I could help her more; and I realized that my insurance probably covers therapy.  I discovered that it did! 

    I decided Ashlynn can’t wait.  There is so much research showing that early intervention is key, and as her mom AND as an SLP, I know she is at a prime stage in development to effect the most change.  She is open and willing to practice, and even opens the app on my iPad everyday that is just to practice speech.  We have to act NOW.  As much as I pride myself on keeping up on the current research, I am not an expert on apraxia.  You might be thinking, what did you go to school for then?  Well, let me tell you, the scope of practice for speech/language pathology is extremely vast and it grows everyday.  Let me list just a few disorders as a school based SLP I am responsible for treating:

    Articulation/Phonological disorder
    Receptive or Expressive Language Disorder
    Auditory Processing Disorder
    Stuttering
    Autism Spectrum Disorders
    Global Developmental Delay
    Cerebral Palsy
    Down’s Syndrome
    Apraxia
    Cleft lip and palate
    Velopharygeal deficiency

    This list is not exhaustive.  Basically, this list is a group of the most common disorders I see in the schools.  SLP’s are also responsible for:

    Voice disorders and pathology
    Traumatic Brain Injury
    Aphasia
    Dysphagia (swallowing disorders)
    Dysarthria

    This second list is more commonly seen in medical settings and not so much treated in the schools.

    My point in this list is to show that all SLP’s have knowledge and training in all these areas.  However, it’s much like a general practitioner.  Your primary care doctor knows a little about a lot; but if you really want an expert opinion you may choose to go to someone who specializes in just a certain part of the body.  Someone who deals with your certain condition daily and who sees a variety of types.  The field of speech/language pathology is not there yet, but there are SLP’s who choose to focus on just one or a few areas thereby becoming more of an “expert” in that particular disorder.

    In the schools, it’s pretty safe to say the SLP’s are experts in phonological, articulation, and language disorders since these are the most common disorders seen; and the average SLP will work with these disorders daily.  In addition, most school-based SLP’s are extremely knowledeable about the law as it relates to them.  However, the average school based SLP will not see as many less prevalent disorders such as apraxia or stuttering; and though qualified to treat it, may or may not be an “expert” so to speak in the disorder.   After the IEP meeting, I decided I want to get “expert” help for Ashlynn from someone who deals with apraxia daily or almost daily. 

    I took her into a private SLP yesterday who came recommended by other mommies of apraxic children.  I left the session with my mommy sense saying “yes, yes, yes!”  This is exactly who and what we need!  She was extremely knowledgeable in treating apraxia, knew and quoted all the references in the literature, and had Ashlynn working to talk the entire time!  I’m so excited not only for Ashlynn, but also for me to learn from her as I set out to become an expert in this disorder as well.

  • IEP on the other side of the table

    So yesterday we had Ashlynn’s initial eligibility meeting.  I am so used to be the one running the meeting and telling parents the results of testing, that it was a little surreal to be on the other side of the table. 
    I have to say that the entire process was underwhelming and I left less than impressed.  You would think that knowing I am an SLP for a neighboring school district that they would have had their @&it together, but they didn’t. 
    To start, the evaluating SLP informs me that she can have the finished IEP to me in about a week to two weeks.  I initially agreed, but it is best practice to send the finished IEP home with the parents.  I shared that in my district we usually send the IEP home with the parents, which had her back peddling and saying that she could do that but I would have to wait a bit after the meeting for her to make corrections.  I told her that was fine with me, since that is how I do it when I am running an IEP meeting.
    Next, she starts reading the reports to me, and they are loaded with errors and mistakes.  Did she not proofread before she sat down with me?  I understand a few mistakes and errors, but honestly there were errors all over the page!  At this point, I’m still trying to keep my cool even though the first impression is not very good.  Next, the SLP who will be seeing Ashlynn comes breezing in late.  When she sits down, the evaluating SLP asks her if she would like for her to go over the Speech report.  Really?  The SLP who will be treating my child didn ‘t read the speech report before I got there?  Afterward, she went through the goals and then asked “Jane” if she had anything to say.  Quickly, Jane began to explain that she is there two days a week and goes into the classroom and sees the kids in a group.  She told me that it is a great language enriched classroom that Ashlynn will get a lot out of.  Um…Ashlynn has APRAXIA.  I’m really fuming at this point.  All the research for apraxia says that children need intense one-on-one sessions 3-5 times a week.  In addition, apraxia isn’t a language disorder, it’s a motor speech disorder!! Finally, the law is very clear that kids receive services based on their NEED.  It is illegal to base service delivery time on the amount of time the therapist is there.  In my district, if a therapist has a child with apraxia who needs more time than she is physically in the building, the speech coordinator sends an additional SLP or SLPA to provide services! 
    I immediately hop in and ask her if she is familiar with any of the apraxia research.  Now she gives me a deer in the headlights look.  Maybe, hopefully, she was thinking to herself she should have prepared a little better, especially since the child’s mother is an SLP!!!  She stammers that David Hammer came and talked to them about two years ago, and she has Kaufman cards etc.  I said great, that she would understand how the service delivery is different for children with apraxia then.  That Ashlynn needs very specific motor planning therapy that is not easily addressed in the context of a language based group therapy session.  She was quick to say that she also pulls kids aside when she is in the classroom, and will leave worksheets with Ashlynn’s sounds for that week with the teacher to work on for the days she is not there. 
    I asked her if she would be using the Kaufman method then.  She replied she would have to get to know Ashlynn before she picked one method or sounds to work on.  Fair enough, but this woman did not so much as glance at this IEP before she came to this meeting.  It’s unbelievable.  If this is the level of professionalism she offers to a fellow SLP’s child, then what does she offer to parents who aren’t as educated as myself??  I’m so angry!!
    After that, she excused herself since it was the end of the day and she needed to get home.  What?  Really?  I’m not the one who scheduled this meeting for the end of the day.  I could have come in first thing in the morning.  This woman is going to be my daughter’s case manager, and she leaves the meeting early?  Unbelievable. 
    After she leaves, the classroom teacher jumps in to give me a packet of papers to fill out.  In addition, she tells me that her classroom is a really great language enriched classroom  (there’s that phrase again, but it sounds good right?) that will be really great for Ashlynn because all the kids are basically working on the same things.  At this point, my bitch side starts to come out.  I interject that I am worried that Ashlynn will be getting cookie cutter treatment when what she really needs is a teacher and SLP who can help her with her motor speech disorder.  Now the teacher gives me a deer in headlights look.  Sigh.  I’m not trying to intimidate anyone or be pushy, but come on people!  I’m not asking of them anything I wouldn’t expect from myself.
    We then talked about Ashlynn’s start date.  They said they were going to have her start November 5th even though her birthday is October 20th, because there will be fall break and they don’t want to have her start school only to have to take a break.  They reasoned that with the transitions and all it would be better to just have her start November 5th.  Well that sounds good, but guess what?  My daughter doesn’t have autism.  She has NO problem with transitions or separating from me.  She loves school, loves kids, and has never cried when I left her somewhere.  Plus, the law is very clear that under FAPE, a district must offer services to a child on their 3rd birthday.  When I explained all this, low and behold they told me that her morning class in fact doesn’t start until November 5th, but she could come to the afternoon preschool until then if I so chose.  I told them I would be coming by the week before her Birthday to observe the afteroon preschool class.  Ugghh
    After that, the teacher left!  This is ALSO illegal by the way.  A general education teacher is required by law to stay the entire meeting, and it only makes sense right?  They are the one who is going to be with my child most of the day, so they need to know what specific needs the child has!! 
    I did make it clear to the evaluating SLP that it did not seem the SLP who left early knew much about apraxia, and that I would give it chance; but if I didn’t start to see progress, or feel that she is using a motor based approach to therapy with Ashlynn, I would take it higher.   Time is precious with apraxia.  Early intervention is key.  My daughter can’t afford to be at the hands of someone who doesn’t or can’t help her right out of the starting gate! 
    I left very frustrated.  My husband told me to calm down and wait and see how it goes before I get my feathers ruffled.  Time is of the essence though, and there is nothing more important than my daughter.
    My advice to any parent walking into these IEP meetings is to bring an advocate.  I work in the school district and know the law, and if you are a parent at one of MY IEP meetings, I follow it.  However, if an IEP team did all this to ME, an SLP for a neighboring school district, what do they get past the average famiy who doesn’t know the ins and outs??  You have rights parents!  You are an integral, if not most important member of the IEP team.  Don’t be bullied because you didn’t know.

  • Video tutorials

    I’ve decided I have to turn this unique situation as an SLP and a mother to a child with apraxia into a positive experience.  I can’t keep sitting around feeling depressed and worried.  I”m a believer in signs from God, and I believe this a big one that has the potential to positively impact others’ lives.  I’ve decided to make videos of Ashlynn for two purposes: one is for me to see and have a documentation of her growth, and the other is to possibly have examples and ideas for other parents on what they can do at home to work with their child.

    I don’t know where this journey will take me or Ashlynn, and though I fear the road ahead may hold additional learning disabilities that she is at risk for, I’m not going to sit in pity.  Ashlynn and I are a team and we are going to do something about it! 

  • Baby development screens

    Baby development screens

    When I held my baby, and even when she was in utero, I had visions and dreams of her being this incredibly verbose child with a large vocabulary.  In fact, I dreamed she would be like me.  The first few months brought all the regular milestones: tracking with her eyes, smiles, giggles, and even rolling over.

    However, she did have a case of very pointy toes.  So pointy in fact, I couldn’t get her foot into a flexed position to even put on shoes.   During her developmental screens I filled out at the doctor’s office, she started losing pace. Motorically, she wasn’t able to sit alone without help at 6 months, she wasn’t crawling, or even able to get up on her legs and rock back and forth.  Verbally, she wasn’t babbling.  She would coo, but not babble.  I just didn’t get it.  Despite my almost constant visual modeling and babbling to her, she would just smile and giggle.  I put her in front of mirrors to have her look at her mouth, but she appeared disinterested.  I consulted with other colleagues who gave me all the suggestions I was already doing, and told me not to worry.  There was one colleague who suggested baby sign and told me lack of babbling was a sign of apraxia, but I wasn’t ready to hear that.  However, I did start signing with her.  I bought the signing time videos and signed to her throughout the day.  Peculiarly though, she wasn’t able to imitate my signs either.

    To address the pointy toes, her pediatrician and I discussed the possibility of CP based on my case history of her delivery.  We talked about a referral to a neurologist, but I was convinced I could help her.  The pediatrician told me to work out her calves daily which I did religiously every night in the bathtub.  Her calves were so tight and I would have to massage them until I could finally get a small flex in her foot.   By a year she was able to flex her feet and I was praised by the pediatrician who said it was so great she had such a knowledgeable momma.  I didn’t realize this would start my damaging thought process that if I sought help I wasn’t being a good mommy.

    Since she only had one word “hi” at 1 year and wasn’t even babbling other sounds, the pediatrician raised her eyebrows and told me she could make a referral to child find.  However, I was convinced that another SLP couldn’t do anymore 30 minutes or 60 minutes a week than what I was doing with her every spare chance.  I utilized all my therapy techniques.  We continued with sign, even though she only caught on to a few, and we played while making various sounds, since imitating sounds precede speech.  I bought a play zoo and play farm and I made the noises the various animals make while she sat quietly and giggled.  I would ask her to say, “moo” or “quack” and she would just smile. We played with cars and pull toys while I made the sounds “vroom, bonk, beep beep, etc.”  She wouldn’t utter even a sound.  I bought and read books that were repetitive such as “Brown Bear” or books that had sounds such as “Mr. Brown can Moo, Can You?”  I was so frustrated as the days went on, but continued to try and work with her every night after work KNOWING that these techniques are evidence based and WORK!  I kept telling myself I knew they would work eventually.  I remembered reading a study in regard to the Hanen therapy model of teaching parents how to work with their children with a speech delay.  In it, the authors said that the techniques are used by parents of typically developing children that are just abandoned by parents of children with a speech delay because they don’t appear to be working.  If there is no reward or positive feedback (i.e. the child mooing when the parent moos), than the parent will not do that anymore.  I was determined to stick with the techniques despite weeks and months going by without them seeming to work.

    My husband, sensing my frustration, bought a baby babble CD.  He explained it wasn’t to undermine me, but just to help.  I was actually relieved.  Maybe they knew something I didn’t.  There was a tip section for parents on working with children.  I watched it over and over hoping to glean something I wasn’t doing, but I was doing everything they suggested and then some.  Ashlynn was so smart, but why wasn’t she talking??

  • Background and suspicions of apraxia in my own daughter

    Apraxia has been a topic of intense interest to me, ever since I was a speech/language pathology assistant.  Apraxia is misunderstood even among the SLP community.  Many SLP’s learned about apraxia, but may not have the skills or experience to correctly diagnose and/or treat it.  I was fortunate to have a mentor who was familiar with the disorder and who took me to a professional development workshop given by Ruth Stoeckel from the Mayo Clinic.  It didn’t take long to put her therapy techniques into practice.  Denver Public schools has a high rate of children living in poverty.  These kids many times didn’t receive early intervention, and therefore may start speech/language therapy for the first time in Kindergarten. 

    I remember one boy in particular.  His name was Daniel and he won my heart immediately.  He had a million dollar smile that made my heart happy every time I saw him.  He was sweet, friendly, playful, and funny.  Unfortunately, his classmates couldn’t see what I saw because Daniel didn’t talk.  His IEP read that he had a basic speech delay, but fortunately with my training I quickly realized he had apraxia.  I changed his service delivery to 4 days a week and we began intense therapy sessions.  Daniel was the hardest worker.  He was so motivated, and despite repetitive and intense drills, he tackled them all and never once complained.  By the end of that semester,  his dad heard him say “hi dad” for the first time.  He was so overcome with joy he cried.  Daniel’s smile had never been bigger.  We had practiced so long and so hard just to get those two words out and he had done it!  I never realized then that 4 years later my own unborn daughter would be struggling with the same disorder.

    I knew something was wrong when she didn’t babble.  She smiled, cooed, and laughed, but she never babbled.  Friends and family members told me I was being too picky because I was a speech/pathologist; but in my heart, I knew something wasn’t right.  Despite my daily, almost nauseating dose of blowing raspberries and babbling to her, she still didn’t babble.  By her first Birthday she had successfully learned the word ‘hi.’  It was by far her favorite word and the most powerful since everyone she said it to responded back to her.  However, this was her only word.  My colleagues reminded me you only need one word by your first Birthday, but I still had this gut feeling something was wrong.  She couldn’t drink out of a straw, she had trouble even drinking out of cup, and I always feared she would choke because she didn’t chew up her food all the way sometimes either. 

    By the time she was 18 months, I knew she at least had a delay.  Kids this age start to go through a “language explosion” adding new words to their vocabulary almost daily.  Each month I waited for this milestone, and each month passed without her meeting it.  By now my colleagues were starting to agree she was delayed and encouraged me to take her in.  Call it pride or denial, but I just couldn’t bring myself to take her in.  What would they think of me?  I’m a SPEECH/LANGUAGE PATHOLOGIST for God’s sake.  I must really suck at my job if my own child can’t talk.  I thought these things despite knowing that a speech delay or disorder many times has no known cause.  Children learn to talk even in homes where there is very little language.  In fact, I tell heartsick parents daily that it is not their fault.  However, I felt like my situation was different since I was an SLP.  I felt I had failed her.  What’s the point in having a mom who is a speech therapist if she can’t even teach you to talk.

    Every day after work I would come home and work again with my own daughter.  I was racked with guilt if I didn’t do therapy with her one night because I was too tired or busy.  She needed me.  The burden was getting so heavy and I was feeling crushed by the responsibility to not only be her mom, but her SLP as well.  During this time, she did make gains.  On my Spring Break, when she was almost 2 1/2,  I had her requesting juice, water, and milk for the first time.  I was thrilled with the breakthrough; however, her words were imprecise and not easily understood by others.  I enrolled her in a nearby junior preschool so she could get language models and see other kids getting their needs met through language.  My heart fell when a little boy her age walked up to us and said as clear as day, “Hi!  My name is Brian.  Would you like to play with me?”  My poor baby could only say ‘hi.’  I started gaining a better appreciation of how my students’ parents feel. 

    By the time summer came around I was ready to have my second child.  We worked on my summer break for an entire month, and she gained so many words; however, talking remained very difficult for her.  Talking shouldn’t be so hard.  Watching her grope for sounds and words gave me a real world appreciation for just how complicated talking really is.  All that training in graduate school came flooding back to me.  I remember my professor saying how it is a miracle any of us learn to talk at all when you consider all the muscles, nerves, and cognitive functioning that go into talking. 

    When my new baby came, I had no time to devote to her.  She had a terrible adjustment.  She was so used to getting one on one time with me everyday, and now she had none.  I had mom guilt now along with the lingering guilt I felt as a speech therapist that couldn’t help my daughter talk.  I was sleep deprived and exhausted.  I finally decided to take her into Child Find.  I knew she would qualify, but I felt like such a failure.  By making that appointment, I had to accept that I had failed her.