Wednesday, January 9, 2013

It is how her brain is wired

I wrote this post a few months ago and then stumbled across it in my drafts folder.  The photos, however, are recent.  

"We think that this goes beyond Ellie having Down syndrome".  Those are the words one of the ECI therapists uttered with regards to Ellie's poor speech development back in June or July or sometime before she turned 3 years-old.

No, I think.  No, it is because you guys didn't want to provide her with speech therapy services.  It is because you didn't send a speech therapist out here until recently and then only monthly at that.  It is because she didn't have the right therapy.  Because she never had a chance.  I argued and argued and argued for her to have speech and now you are leaving her!

And yet, I knew that they were right.  Ellie wasn't talking.  She was barely making noises.  She didn't babble.  Didn't jabber.  Only a handful of words emerged from my daughter's beautiful mouth.

I wanted her to be deaf.

Because it would explain why she couldn't speak.  Because then we could try hearing aids.

I wanted her to have poor vision.

Because then she could have glasses and it would explain her poor signing.

Give her peanut butter.  It will stick to the roof of her mouth and her tongue will go up so that she can form works with /n/ and /t/.

She couldn't feel that sticky peanut butter on her high arched palate.

Place ice cream on the upper lip.  The coldness will cause her to lick it off.

She couldn't feel it.

No matter what we tried, her little tongue wouldn't point up.  It would just go all Gene Simmons-way out and down.

I watched her.  I saw her try to mimic my mouth.  She would look so intent on imitating and yet, she couldn't physical follow what I was doing.

"Well, it must be how her brain is wired.  This is beyond Down syndrome.  She must have poor oral motor planning."  The brain signals are not reaching her oral motor muscles properly.  They are jumbled.  She should be making /m/, /p/, /b/, /w/, /d/ early phoneme sounds, but she is not.  She should be this.  She should be that.  She is instead focusing on guttural /g/ and /k/ sounds. She does not show signs of true apraxia.  Should be. Should be. Should be.  I am so sick and tired of the should be's.

signing "car"

Her signing is the same way. Why is it car, puzzle, climb, celebrate, and ambulance all look the same?  Blanket, paint, sweep, friend, train?  Baby, love, and bear?  Shoe, more, ball, help?  Her signs are such gross motor approximations that even I cannot interpret them without a vowel or consonant sound accompanying them.  I get frustrated.  She gets frustrated.  I just want to understand.

I guess she wanted her water!

Okay, so I didn't really want her to be hearing impaired.  I didn't want her to be vision impaired.  I certainly, don't want there to be a sensory input-output neurological connection.  I just want communicating to be easier for her.  And, yes, selfishly, for me.  I want to hear her voice and understand her.  I want her to be able to communicate her needs. . . by talking.  Or at least by signing.  Poor oral motor planning.  Poor fine motor planning.  We will get through this.  Together.  On Ellie's time.

**Ellie is no longer in ECI.  She still struggles with formulating sounds, words, and signs.  She is motivated to communicate though.  There are still meltdowns when I cannot figure out what she wants, but she is trying to sign new signs and say new words.  We are currently using both Kaufman therapy and something similar to PROMPT. Of course, we continue to use our Signing Time videos and Picture Exchange Communication.  Ellie is a rockstar and continues to amaze me everyday.**


  1. It is hard when our children struggle to communicate. My husband's favorite saying is, "it will happen in her own time". I too have struggled with sensory processing with my Katie. I try not to compare Katie with anyone but Katie, but some days are difficult. Continue what you are doing and it will happen in Ellie's time.

  2. This is the first time I am reading your blog so I don't know anything about you guys other than this post, but have you tried private speech therapy? We've never been happy with abby's early intervention services and for so long, they refused to give us speech therapy so I went around them and signed her up for private therapy. We go weekly... the progress she's made in just a month has been really great. Hoping something like that might be in the cards for you!

  3. BabyPelly-Dont mean to jump in for Anna, but they are in private speech. That is how we are blessed to get to see them every week!

  4. One of these days I am going to figure out how to reply to comments on this blog!

    babypelly--welcome! I am sad to hear that you too have not had a good experience with early intervention. We have been going to private speech therapy for a few years now. Fighting with insurance has been rather interesting and at this point we are paying at a self-pay rate. Ellie loves her therapist and she seems to coax sounds out of Ellie that no one else can! :)

    Donna--you are very wise. It isn't fair to any of our children to compare them to others. Like you said, compare Katie to Katie and I shall compare Ellie to Ellie. If I look at what Ellie can do now vs. just a few months ago, she has grown leaps and bounds!

  5. Anna, I could have written this post!! Olivia will be 4 next month and we have "hi" and a few word approximations. I WAS doing PROMPT, but honestly I don't think it really helped her. Here is why. PROMPT is something that is done to Olivia. It is not something I can do with her and she can't do it either. I am trying a new program called Speech-EZ. It is developed specifically for apraxia. I am doing a week long intensive program there next month and I can't wait.

    1. You can also check out some videos on YouTube regarding this method. I am VERY optimistic about this, because I can do it with Olivia AND she will eventually learn how to do it herself. Here is one video..

    2. One last thing... I would highly recommend The Listening Program. I have been using with Olivia for about two months now and I noticing some improvements in her fine motor skills. :)

  6. Great post. Many of Cora's signs look similar. There are about 4 categories that look very alike. I just run through them until I get a big smile showing me I got it right. Of course, her fine motor gradually gets better so her signs improve. But it's still hard.

  7. Anna- poignant post.... Communication and our longing for it is always touching. You will find your path to whatever way of communicating works best for you and your daughter - despite her brain she is still quite little and has other developmental tasks that may assist int his. Do you use pictograms/pictures? I'm not familiar with prompts- that may mean pictures :)
    As for the reply to comments -I don't use blogger anymore but I would think that in your settings there would be a way to personalize and set up how you want to comment? Best to you and yours...

  8. My almost-3-year-old son, who has Autism, has a ton of frustration with our inability to understand him - and we are often incredibly frustrated as well. In fact, the meltdowns that began our search for diagnosis were mainly based on our inability to communicate's causing intense frustration. Last year this time, just two months prior to diagnosis, he had no words at all, none - no approximations, nothing. He would point, but wildly, too vaguely to be sure what he was pointing at. He knew two signs, but often mixed them up. He is talking now - as of about May of this past year. After a good bit of pushing & pleading, he was able to get 2 speech therapists through Early Intervention (which ends very soon) and we also added one private. He still only knows a couple signs - I wanted to learn more for all of us, but it never happened. He has an absolute ton to say - but we can only understand a fraction of it. So many words sound the same (car & star both sound like "bar" for instance; up until recently, balloon, bubble & purple all sounded the same) - or are such vague approximations. We're working on it, bit by bit. After weeks of work, he was able to start saying the "p" in open, after having pronounced the word 'oh-eh" for months. One little sound at a time & hopefully, the frustration will ease.
    Good luck to you on your continued journey.

    1. Hi Jennifer! Ooh I feel your pain on the communication. I really do. It is frustrating for us parents but sometimes I think even more so for the kids. They think they are telling us something but we just do no understand. Do you use PECs? [Picture Exchange Communication]. We have increased our use in pictures and that has really helped. I have pictures of her favorite foods and I show them to her. Ellie then hands me the picture of the food she actually wants. While I would love for her to actually be able to tell me with words, these pictures have helped all of the meltdowns and tantrums.


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