HOPE

Life has certainly been moving along at a rapid clip and I often think oh I should blog this topic but then I turn around and someone else needs a nose or butt wiped.

School started in July for Larkin and it was a rocky start for her team.  I hesitate to write or share how I am feeling during those times because I have learned that it simply takes dedication and time to smooth things out.   Sharing my frustrations at a particular moment in time is not fair to anyone involved so I tend to go silent until everyone is on the same page.

Larkin’s team is truly amazing and everyone has stepped up to meet this little girl where she is currently and push her forward.  There was a significant break down in communication and in the implementation of the IEP and I was conflicted in my emotions ranging from anger, frustration, sadness, and just plain ole tired.

Deep breathing exercises along with a team that met tirelessly with me vetted out the approach that was in Larkin’s best interest and then I relaxed back into a life routine that allowed the school and team to work.

Hard work is exactly what Larkin (and her team) is doing every single school day.  I don’t like to use the word “routine” but rather consistency.  Consistent people, goal approach, sign language, words, along with translating the work that is done in one to one therapy sessions back into the classroom in a meaningful way, is the plan.

A plan that is working beautifully and made all the work and meetings totally worth it because Larkin is learning some amazing skills.

I met Brenda Learner a few years ago at a luncheon.  Brenda is a retired SLP but I see her often in schools or in social settings and she is lucky I don’t bear hug her every time I see her.  When I first met Brenda a luncheon we were introduced as having a common thread of therapist and me having a child w special needs.  Brenda asked me about Larkin and I responded with the usual clinical definitions and shared with her that one of my biggest heartbreaks is that I may never hear Larkin’s voice.

Brenda calmly smiled and asked me “can your daughter laugh” to which I said smiled and answered “yes she does now” (seizures had stolen Larkin’s laugh for a very long time) then Brenda asked me “can your daughter cry” which caught me a little off guard.  I chuckled and replied; “oh my yes can she ever” and Brenda’s response made me stop cold and tears well up in my eyes:

“Then your child will be able to speak”

How simple is that?  I totally (for the first time) understood the connection between breathing, sounds, and speech.

Simple yet so powerful and I floated out of the luncheon because Brenda had given me

HOPE

Because of hard work, consistency, translating therapeutic work into the classroom, and HOPE ~ Larkin has achieved some monumental goals.

Larkin has been using her PECS appropriately across settings at school.  When her Cross Cat teacher asked me to allow the team to try PECS I was open to it but had very low expectations.  Team approach means everyone has a place at the table and by all means necessary I am open to teaching this little girl to communicate and thank goodness!

Larkin’s OT uses a PECS of “swing” and since beginning the process in September Larkin has progressed from just learning to touch and hold the picture ~ to using it to communicate that she wants something ~ to identifying the difference between the “swing” picture and a “shoe” picture.

All the way to..

Signing, “swing” and approximating the words “mo” “wing”

Yes you read that correctly.

“MO” “WING”

AND ~ yes I am typing in all caps but not to display shouting (although that is appropriate) but that is an all caps SMILE

AND ~

In the last few weeks if you show Larkin a picture of a baby … (I use a wipes box that has a baby on the side) and ask, “what is this” Larkin will look (huge!) at the image and smile and in a very very very soft whisper voice say

“baby baby”

It has been amazing to hear the most delicious sound of “baby” softly whispered in a way that allows me to hear Larkin’s “voice”

I am smiling and so thankful for HOPE therefore I am spreading this message loud and clear for all who may be struggling or losing peace in the daily struggle of nevers, won’ts, can’ts, because this girl of mine fights through the chaos of subclinical non-stop seizures and there were (and will always be) some very dark moments but always always always keep HOPE tucked away near your heart and allow it to incubate because you never know when your baby will surprise you by climbing their mountain when you aren’t watching.

“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” Shel Silverstein

This entry was posted in Uncategorized. Bookmark the permalink.

One Response to HOPE

  1. dusty says:

    Just now read this. Bee-yoo-ti-ful.

Leave a Reply