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SLP Mommy of Apraxia: October 2012

Monday, October 29, 2012

Putting words together!

Today was such a great day!  I have to write it down so I remember things Ashlynn is doing so later on, I appreciate how far she has come.  When I'm with her everyday, I tend to get focused on how much she is behind instead of celebrating the new things she does.  I really need to focus and celebrate all the successes!

Today when she woke up from her nap, she started to say outside (ou-sie), and right before I could tell her no, we weren't going to go outside, she said, "i - da-dee" (is doggie).  She tried to make a sentence using three words!  They may have been out of order and slightly unintelligible to an unfamilar listener, but I knew what she was trying to say!  I clapped and we cheered at her success.  She was so proud of herself she ran around the house labeling all the things she knew how to say just to keep up my enthusiasm :)

She pointed to various things: shoe, share(chair), baby, hair, nail, nose, pupple(puzzle), baba(backpack), etc.  It was so cute!

Later when her daddy got home, she exclaimed, "home!  Daddy home!" 

My heart is leaping for joy today.  Today was a good day.  I can't wait until we can really talk and communicate.  My child is finding her voice! 

Tuesday, October 23, 2012

Omega supplements?

If you have done any research on apraxia, Omega supplements will probably come up.  I have had my daughter on Barlean's Omega Swirl for a little over a month now.  Though there is no definitive proof that Omega's help speech, I chose to try it for a few reasons.
1.) Omega supplements have been getting more attention for helping disorders of the brain.  When I was researching bipolar disorder a few years back, one of the therapies included a good Omega supplement program in place of medication.
2.) Omega supplements are encouraged with prenatal care.  Web MD says,
"DHA appears to be important for visual and neurological development in infants."  Since apraxia is a neurological motor planning disorder, it certainly couldn't hurt to have her take the supplements.
3.) Testimonials from other mothers.  I am part of an apraxia support group on facebook, and many mothers believe the supplements have caused great gains in their child's speech development. 

For these reasons, I decided to try it with Ashlynn.  I have to say I have seen a jump in her speech development.  She is now attempting to say 3-4 syllable words, one of which is vitamin..lol.  Two days ago she tried to put a sentence together,  "mommy..me...go...shoes" after I told her we were going to go shopping for shoes!  This was very exciting! 

She just started private speech therapy and has only had one session.  Otherwise, nothing has changed in our routine. 
I am still making her request items using a carrier phrase such as "I want" and "I see" modeling and expanding her utterances, and scripting our day for her. 

Of course, I also saw a jump in her speech before supplementation when she finally started imitating sounds, which she wouldn't even attempt before.  So, in conclusion, have supplements helped her speech development?  I can't say conclusively that they have, but I also can't say that they haven't. 

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Friday, October 12, 2012

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.

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Wednesday, October 3, 2012

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.

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