the facts

• an update on our love, Ms. Pat, can be found here [click]

Curt and I both want to thank all of you who prayed for us last week during Rylie’s evaluations.  We are so blessed to know people who love our kids and who sincerely want the best for them.  This post is a (trust me) very brief synopsis of what the testing found.  I am not an expert, by any means.  Below is how I explain things in my head, though the examples and definitions may not be fit for the American Journal of Medicine.  NOR are they appropriate for diagnosing your child.  This is just a small window into the testing we experienced.

I am unsure of where to start.  Our trip to Detroit was hard. Let’s just do the facts today, ok?  It will help me, hopefully, to be clear and get some of my notes down for later.

The speech evaluation confirmed what we already knew: Ry has a classic case of Childhood Apraxia of Speech.  Ry had 6 sessions of therapy with Nancy Kaufman.  We now have an updated vocabulary list to work on, a few new speech exercises, and a better understand of what to tackle as parents vs. what to let her therapists handle.  It was good to know that our current path is appropriate.  Ry’s school therapist came down for the last day and was able to sit in on the final report.  We are so blessed to have people so invested in Ry’s life.

Nancy saw some things in her evaluation that were troublesome- namely, Ry’s impulsivity, constant movement, and lack of retention with directions.  She recommended that we take advantage of the Sensory part of her clinic.  We made an appointment for a 2 hour evaluation with the assistant head Occupational Therapist.  Within 30 minutes, Magda had moved into an area of the body we were unfamiliar with… and an area that had never been tested on Ry: the inner ear’s Vestibular System.  She failed every test.      

The system is a reflex and is thus unconscious in nature.  We don’t realize we’re using it, but it’s necessary in nearly every single thing you do each day.  Balance.  Speech.  Depth perception. Calming down.  Processing information. Walking around objects.  Controlling impulses.

Our brain uses the 5 senses to process everything around us in time we cannot even measure, but it takes much longer for Rylie Girl.  Everything for Rylie, most obviously her speech, is being translated.  She looks at everything twice in order to make sense of it.  We see a yellow sign with arches and we immediately think, “McDonalds.”  Ry sees it and thinks, “Yellow sign.  Arches.  Food.  McDonalds.”  Ry sees a picture of a horse.  She thinks, “horse” and then reminds herself how to make the sounds to verbally SAY ‘horse.’  Ry comes to a curb on the street.  She stops and reminds herself ‘one foot up, another foot up.’  Everything must be practiced, memorized, and repeated until it becomes more like the reflex it ‘should’ be.

No wonder my child is exhausted.  Eating is hard.  Walking is hard.  Communicating is hard.  And when her body has had enough, she cries.  She cries hard and refuses to be consoled.  Everyone does this to some degree when they’ve had enough.  But for Rylie, this happens multiple times a day.

Think of yourself as a puzzle all put together when you are rested, fed, and healthy.  Now picture yourself throughout your day or week as little pieces of that puzzle start to pull away.  You skip lunch one day.  A friend is harsh with you.  You get locked out of your car.  Hundreds of times each day, we put ourselves back together. Ry can’t do that right now.  Her body literally cannot do it. 

The system can be healed, but it will take time. We have to teach the left side of her brain to talk to the right side of her brain better.  We have to work on her primitive reflexes (specifically her rooting reflextonic neck reflex, and derotational righting reflex) so her body can get stronger and let go of them.  We have to give her body lots of heavy play activities to help it ‘organize’ itself when it comes undone. 

The ‘heavy work’ theory is really fascinating to me. It explains SO much about Ry.  The goal of ‘heavy work/play’ is to make the body and senses stronger so that less extreme examples of input are necessary to process information.  Because her Vestibular System is impaired, her senses are muted.  This is why she she loves BIG stuff.  Swinging… but swinging HUGE and for forever.  Like, until my arms are going to fall off.  Extremely loud music.  Hopping incessantly when she’s upset.  Riding on big, loud tractors.  Kicking hard.  Hitting harder.  Spankings… she ASKS for spankings.  All these extreme sensations are giving her body the information- the feeling- it craves.  It organizes her.  It puts her back together.

Now the real work begins.  There is every reason to believe Ry can live a completely normal life if we do some serious work between now and, say, age 6.  Her speech, focus, anger, and retention will simply not improve in-depth until this vestibular system is better.  It is great to have a focus. Exercises to do.  Therapists to talk to. A children’s hospital and rehab hospital within 35 miles.  It’s time to make a plan for both outside and inside this home before we lose any more ground.

great descriptions here: click

great photograph of the Vestibular System here, but the language will scare you: click

great examples of exercises here and easier language: click


About texasnorth

TexasNorth is a little farm in Western Michigan. It's home to 5 chickens, 25 longhorn cattle, a coonhound (Banjo), 1 barn cat, a husband, and 3 ridiculously funny children. The mom of this zoo has been known to mow the lawn in a skirt and roast marshmallows after dark. View all posts by texasnorth

20 responses to “the facts

  • Amy

    i would imagine it feels good to have a plan, a reason to believe that everything is gonna be OK, and a window into her daily reality!

    What a special daughter you have…..shes cute, spunky, and teaching you all the time…exhausting, but wonderful nonetheless 😉

  • beckyswann

    I’m thankful you were able to get the answers and explanations you needed. I’m so thankful Rylie has you guys to help her and love her as much as you do. I will keep praying for all of this! You’re doing a great job, and if you lived closer I would drop off a big bottle of wine:)

  • Jessica

    WOW! This is so amazing and Rylie has to be so thankful to have parents that love her so much and are willing to work hard for her. So many kids dont have that. Man, your one super family. I know the road will be challenging but I am so happy you know the road to go!!

  • Cathy

    I agree with Jessica, Rylie has to be blest to have such wonderful parents who will work with her. Unfortunately, there are some the will not put the effort and time that you and Curt have/have been working and finding out what to do and/or help for Rylie. May God give your patience and and strength in your efforts to work with Rylie.

  • Jen

    Katie-I am delurking (my sister knows Jo VP and that’s how I found you!) to ask if you’ve ever seen the Temple Grandin movie? Obviously, the diagnoses are the same (she was autistic) but she had some sensory issues that remind me of what you described with Rylie. And, it’s such an inspiring and encouraging story! You might to check it out. I think it’s called “The Temple Grandin Story”.
    Also, we have a 15 year old, who struggles greatly with impulsivity, sensory issues, and we are embarking on a whole NEW set of tests to try to help her. What a blessing it is that you have found this while Rylie is young and God has given you some amazing professional help close by. Many blessings on you as you continue this journey. God WILL reward your efforts. And when the day is rough, pour a glass of something good and have a piece of apple pie! 🙂

  • Jen

    ack-I meant to say the diagnoses are NOT the same! Sorry!

  • Julie

    Wow. I second the comments on how blessed Rylie is to have you and Curt to take care of her! and I can’t imagine how exhausting this all must seem to you. We will pray for you!!!

  • Mandi

    It’s good to be able to put a name on the problem and to have a plan of attack. I will continue to pray for you guys as you head down this path of healing.

  • Cortney

    Oh, HONEY. I’m so glad that you have a diagnosis, a focus, and a PLAN to point you all in the right directions. Sweet, sweet Rylie girl. I have a hard enough time not getting exhausted by life everyday as it is, I cannot imagine the frustration and exhaustion that must come with having to think yourself through what “should” be reflex. Bless her dear sweet little heart. And yours. I know there will be a lot of hard work and tears through the next few years, but I’m also confident it will all be worth it, and Ry will continue to blossom into this amazing little girl! Best of luck and all my love and support, dearest!

  • Kim Aguilar

    my heart and prayers go with you, every day

  • Margie

    This is fascinating. And eye-opening. I had no real understanding of what you were dealing with with Rylie. And what a relief it must be to know what to DO. How to help her grow, develop, and just be. Let me know what, if anything, we can do besides pray and lend your our support via keyboard. Wish we lived closer.

  • Miss Laura

    This is going to sound weird, but what a RELIEF it must be to know there was something you were missing. That there’s something else underlying that explains why you guys weren’t seeing the progress you’d hoped for. The Vestibular System issue is such an interesting one – it’s the same system that gets out of whack when you have vertigo, and as a semi-regular sufferer of vertigo I know how badly that can make everything else a challenge. Moving is harder, thinking is harder, visual focus is harder, not hitting objects while driving is harder. But to be three years old and have it be affecting so many more things than that? Anyway, praise God for new information. And for such an optimistic prognosis. Can’t wait to watch you, Curt, and Rylie travel this next step of the journey. It’s exciting stuff.

  • Renee

    Great explanations for my nurse brain. It all makes so much more sense. I am so thankful that you all got some direction and “real” help for a core problem not just a symptom. I am praying for you and Curt as you work hard to implement the plan of action. You are awesome parents! Rylie is an amazing little person. This can be done. Don’t ever give up. We serve a very big God. Love you!

  • Amanda

    Wow, wow, wow, wow, wow! What a brave little girl you have! I’m glad her Mama is friggin’ amazing, too. Praying all kinds of prayers for you.

    Much love from the Johnson-Lufburrows!

  • Trish

    I hate being repetitive, but I have to echo all the amazement and relief expressed by the other commenters– what a week you had! The road ahead is sure to be long and difficult, but at least you’re now ON an actual road, instead of wandering in the darkness, just hoping you were moving in the right direction. If there is a solution, you guys are going to find it– you are wonderful parents!

  • erin thomas

    wow! that’s a lot katie! and that is just the brief, factual version! i can’t imagine the emotions of it. plus, i think my brain would be on overload. i’m so thankful that there is a better understanding and more of a plan. rylie is so loved. can’t wait to meet that girl someday. and she is lucky to have such an awesome mama! 🙂

  • elly

    wow. praying for rylie’s beautiful mama. and papa. thanks for the update. i love that you have amazing docs that LOVE her so much. and so well. hang in there. xoxoxoxo

  • jtp

    oh to have a plan…. so great! Rylie is so lucky to have parents that can…and will fight for her and work with her to give her the best chance possible- so important. I see too many kids in high school and you think how they could be different “if only…. when they were younger” Yeah TXNorth!!!! Praying for all 4 of you!!!

    Speaking of which – where was our little muffin man while y’all were testing? Who kept him???

  • Jim

    Plans are really really great. Lucky girl to have been given her parents.

  • Jenn Soehnlin

    Wow, so glad I finally stopped by your blog! Rylie and my Ethan sound sooo similar (except Ethan is a vestibular avoider, not a seeker. He prefers to collect rocks and sticks and weeds at the playground rather than actually, you know, playing on the playground. He could sit and watch TV all day if I let him. OT has really helped him though). How was seeing Nancy Kaufman? We’ve thought about taking him sometime to her center. I attended an online seminar she gave and she seems amazing. Anyway, so glad I’ve started reading your blog. You put this journey into such eloquent words, and I’ve thoroughly enjoyed experiencing your journey with apraxia and life in general. Keep doing what you’re doing, Ry is lucky to have you and Curt taking such good care of her!

talk to me

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: