1054 Days

That's how long it has been since we got the official word that Yes Stacia has Childhood Apraxia of Speech. 1054 Days of officially being on the journey of raising a child with apraxia. 1054 days ago Stacia was just over 32.5 months old having the expressive language skills of a 5 month old. For those who want to know that means she had an 85% gap between her receptive (what she understood) language and her expressive language (what she could say). In the past 1054 days Stacia is now 66 months old and has the language skills of a 24 month old. She still has a 64% delay.

Today May 14, 2014 for the 1st ever Apraxia Awareness Day we celebrate Stacia and her 21% increase in her expressive language. I might note here that when Stacia uses her Dynavox or Signing that her receptive and expressive language are on the same level. I am referring to her being able to use her voice.

It's been 1054 days of fighting for Stacia. Fighting not only to get her the services she needs but fighting people who inform me that she does not have apraxia but that she has autism. Sad to say this fight does include some family members.

Yes there are children who have Apraxia and Autism, just like there are kids who have Down Syndrome and Apraxia.

http://ezinearticles.com/?What-is-the-Difference-Between-Apraxia-and-Autism?&id=1154729

To me this is the big difference " ...in the case of verbal apraxia, if you play with your child and don't demand speech from him or her, you may find that they begin playing actively and engaging others in their play." or this regarding social interaction  "... in the case of motor apraxia, this is normally because they are not always capable of performing the physical movements that allows them access to others. However, motor apraxia won't usually make a child want to avoid social interaction altogether, such as failing to make eye contact, or specifically moving away from other people."

Stacia moves towards other kids and will try and interact with them. Sometimes she is not always successful especially when she can't make herself understood. She does move away from others at times when they make her feel uncomfortable or are making fun of her.

Today is the first ever Apraxia Awareness Day

Stacia more interested in checking out a different view from her play house

Stacia wanting to see the words written on her sign

Successful and Happy Stacia reads the words on her sign

For those who are wondering what the sign says it reads

I AM A CHILD

WITH APRAXIA

BUT

APRAXIA DOES NOT DEFINE ME

Determined Courageous Brave Great Speller
Chocolate Lover-hand it over and no one gets hurt
Loves Pooh and Friends Loves to Swing Loves Peanut Butter
Loves Ice Cream Loves Minnie Mouse

Tammy

New Therapist and Mom's thoughts on Communication

    Stacia has added another therapist to the list of ones she is seeing. She started seeing Beth at PTC where she goes for private therapy. She will continue to see JoAnna as well for speech along with Polly for OT. Since I (mama) had my times mixed up thinking I had to leave home at the time we needed to be there she ended up only going for 30 minutes instead of 45 minutes. In some ways it worked out good since it gave her a chance to ease in a bit with Beth.
    Stacia made several sounds including the z sound though we only got it once and we could not get her to repeat it. This is not something unusual for children with childhood apraxia of speech to make a sound when playing or doing something else where they are not concentrating on making a sound to make a sound and than when they have to concentrate on that sound not being able to make that sound.
    Stacia is starting to reach the point where she is realizing that other people can express themselves with their mouths and that she has a hard time doing that. She is getting to the point where she does not even want to try to talk. Which would explain why she has regressed some from what she was doing last spring.
Right now we are giving her lots of praise for any sound that she makes with the exception of screaming or crying. If we want her to made a b sound and she makes the m sound we are going to be praising her for making a sound.
    She did go to preschool this week after missing last week due to being sick though since it was only 2 days scheduled it was a review week. They ended up having only 1 day with so many out sick or having vehicles broken down. She has 3 classmates 2 girls and a boy in her class though there is supposed to be another girl starting soon.    
     Her teacher is very supportive of the fact that we are planning on homeschooling her once she reaches kindergarten. Half her class are those that are going to go to be home educated and that other half will be going to public school.
    Her teacher says she is doing great at school and appears to know as much and in some areas even more than the other children the only problem is she has no way of communicating to let the world know how much she knows. One advantage to having her in such a small private preschool is she gets a lot more 1 on 1 attention and her teacher is use other ways of finding out what she knows. Today they worked on colors:Red, Orange, Yellow, Green, Blue, Purple, Black, and Brown and I was told the only one she struggled with was Orange. She can't say the names but she can point to the different ones as you ask for them or she can hand you an object of that color.
   
     We are working on getting her an Alternative and Assitive Communication Device (AAC) though while we are waiting to hear from the insurance on rather they are going to cover the cost or not we are getting her some training in using a Picture Exchange Card System (PECS) so that between that and using American Sign Language she can communicate what she wants and needs at least to a simple degree that is more than using ASL for those who know it and can sign with her or pointing for those that don't.
      While Stacia is not able to say much with her mouth she says so much with her hands, her body and her eyes. Now if the world would just learn to read and listen to children like Stacia who don't communicate with their voices. Listen not with your ears but listen with your heart to children with Childhood Apraxia of Speech because children like Stacia have so much to share and tell us if only we listen. Sometimes it is hard I know because I walk this road everyday.