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.**