SLP Mommy of Apraxia

Tag: Apraxia journey

  • “I Will Wait” Struggles have made victory that much sweeter.

    Ashlynn’s progress continues to grow by leaps and bounds.  So many times I catch myself smiling and my eyes well up with tears to see her knock down all of her obstacles.

    Last month she learned to jump for the first time at 3 1/2.  At the beginning of the year, it broke my heart to watch her try on a classroom trampoline.  On their turn, all the other kids exuberantly bounced away.  When it was Ashlynn’s turn, all she could do was march.  Now, she is not only exuberantly bouncing, but she is catching air in my kitchen, on my patio, and even on her bed.  I was scolded for jumping on the bed, but I don’t care if she busts every spring and I have to buy  her a new one.  It’s worth it.  It’s all worth it.  Every penny spent, every happy and sad tear shed, every minute in therapy; it’s all worth it!  
    She also sang to a song that she had never heard before in the car last week.  Mumford and Son’s “I Will Wait” song was on the radio.  I was singing to it, and all of a sudden I heard her.  Her little voice filling the car with the chorus.  There are no words to describe the feeling.  I will buy the CD and put the album cover in her baby book. 
    These little triumphs, so sweet when  you have a child with a developmental delay.  She has taught me so much.  We may have had challenges, but we experience something so much sweeter when there are victories.  We appreciate all the little things so much more.  We never take for granted, not even for a second, her talking, her jumping, her SINGING.  

  • New worries

    New worries

    It’s no secret that my daughter has a short attention span.  I always worry of course since I’m her mom that it might be more serious than just the average toddler one minute attention span; however, today her school SLP expressed some concern as well.

    She asked me to come in next Wednesday to discuss possible strategies for keeping her on task in a group setting.  She said that taking her out has been working great for speech, but they don’t want to have to take her out of the room for every activity they are doing.  I obviously agree, but, sigh, I have to admit my heart sank.  I knew she has had trouble with attention, but much like her speech, I was hoping that no one else noticed and that I was just being an overly worried mom.  Having it pointed out by someone else makes my heart very heavy…again.

    My poor little girl.  I know that when things do get hard for her she has a tendency to change the subject (or switching her attention to something else since she can’t really verbalize much yet); however, she has a very difficult time attending to anything without getting distracted by something else.  What is normal, what is not, I don’t know.  I know it’s a little too young to diagnose ADD, but I hope to God she doesn’t have that too.  She doesn’t deserve this..any of this.  She’s the sweetest, most vibrant, lovable little girl who shouldn’t have to fight for everything she does or learns.  I know it’s not fair for all the other children who have disabilities either, but this is MY baby girl and I have a right to feel sad for her.

    I also know as her mom I have to be strong for her.  I have to be the champion in her corner, her advocate, her soft landing, her biggest fan.  I want to do everything I can to make sure she can be anything she wants to be, and be what our Lord meant for her to be.

    When my husband was diagnosed with bipolar disorder nine months into our marriage, there were people, many people, who told me that at least I knew before we had kids.  Yes, they were implying I shouldn’t have them.  However, that’s not what God commands us to do in the bible.  He didn’t say go forth and multiply unless you have some disease, ailment, or defect.  I believe He didn’t say that because He told us that we are all made in His image and likeness.  My husband says all the time how she is just like him, and it scares him.  It scares me too because his road was not easy.  But he’s here.  He overcame everything.  He overcame all the odds and now he is a loyal husband, doting father, and brilliant engineer.  God had a purpose for him, and He has one for Ashlynn too.  However, it doesn’t make it any easier.

    Ashlynn and her daddy on Halloween. Exactly 3 years old. 🙂

  • First week of pre-K

    After my IEP experience, I was excited but also skeptical pending the first day of school.  Excited and hopeful she would finally get the speech and language enrichment she so desperately needs, and skeptical because it didn’t seem like her teacher or SLP would be the ones able to do so.

    I dropped off her private speech report to the teacher and SLP so they could at least see her progress documented by the private SLP. 

    I was pleasantly surprised to see there were 4 kids and 3 adults in the room.  Talk about a great student/teacher ratio!  There was the teacher, the para, and then depending on the day either the O/T or the SLP.

    Day 1: I received a weekly agenda, which is basically the teacher’s lesson plans.  It’s awesome because even though Ashlynn can’t tell me what she did, I can look at the agenda and talk about her day with her. 

    Ashlynn came home and we ate lunch.  While she was eating, she balled up part of her sandwich, hid it in her fist, and asked me playfully, “Wherdido?” When I repeated, “Where did it go?” She laughed, opened her fist and said, “right der!.”  Now, “right there” she has been saying for a month or so, but this “where’d it go” was new!  She played it the whole day, obviously proud of herself. 

    Day 2: I pick of Ashlynn up from school and the SLP tells me that she believes it would be best to pull Ashlynn out of the classroom and drill (duh), but I was nice and on my best behavior.  I smiled and said, “Great!  I’m glad to hear that!  I think she really needs that.”

    Day 3: Ashlynn brings home art projects everyday.  Today we got a tree with various fall leaves.

    Day 4: Ashlynn brought home the cutest fall leaves wreath.  I immediately hung it up!  I love it.  Great for working on colors.  While eating lunch today, I asked her if she sang the song “Autumn leaves are falling down.”  She kinda said ‘ya’ and so we sang it.  When she was done, she said “see” for sing.  I asked her what she wanted me to sing and she said “bee..bubu bee.”  I clearly didn’t understand and she started kinda singing the melody to the baby bumblebee song.  I asked her if she was singing “baby bumblebee” and started singing it.  She started doing all the cute little gestures that go with the song.  I emailed the teacher if they had sang this song today (I hadn’t seen it in the agenda), and she responded in a timely fashion that they had been singing it all week!  How exciting!!  Ashlynn finally told me something that happened in her day!! 

    My skepticism might be waning.  I hope so.  I just want the very best for Ashlynn, and this week seemed very productive 🙂

  • 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.

  • 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??