Apraxia Conferences

Before I had Chelsea's SATB2 Associated Syndrome diagnosis, she had several other diagnoses. One of the big ones was Childhood Apraxia of Speech (CAS). Since I was completely new to the special needs playing field, I decided to go to the national CASANA conference. 

CASANA is the national Apraxia organization. They have recently changed their name to Apraxia Kids. 

Attending the two conferences I did was incredible, and taught me so much! Here is how the conferences ran:

First Day

The first day started in the afternoon, giving the attendees time to arrive and get settled. It began with a meet and greet, and I got to know several other parents and lecturers. After the meet and greet, we picked up our schedules for the next couple days, and went to the keynote. 

The keynote in Tennessee was my favorite. It was about promoting resilience in children with special needs. The keynote in Texas was geared toward researchers, and most of it was over my head. 

After the keynote, there were drinks and appetizers in the hotel lobby, so everyone hung out and talked about Apraxia and introduced our kids. One thing I really liked was that on our lanyards, there was our name and a picture of our child with CAS. 

Second Day

Quick breakfast in the hotel lobby, then off to classes! You register for which classes you wanted to attend ahead of time, and I picked ones about working with your child at home, making therapy fun, advocating for your child, and a plethora of others. 

My favorite classes were the ones on making therapy fun and engaging, and then anything taught by Dave Hammer or Nancy Kaufman. They are both incredible speakers, and I took so many notes that my hand was cramped for days! 

Lunch was provided between classes, and another thing I really liked about the conference was that they had "topic tables", so once you got your food, then you would go find a table that interested you. So one table was for IEPs, another for "Dads of CAS kids", another for potty training, or homeschooling, or teens with CAS. It was so relieving to find like-minded parents that had the same concerns. 

There were also tables with vendors all around, and I found some amazing resources! I talked with the PROMPT Institute and was able to organize a training in my state, got videos on how to work with kids with CAS, books, and lots of great things!

One table that was really interesting was "The SLP is in". You needed to sign up for a time in advance, but it was free, and there was an apraxia boot camp trained SLP there, and the parent could ask anything and everything in their allotted 15 minutes. 

That evening, dinner was on your own, then they did some kind of activity- a rodeo in Texas, karaoke in Tennessee, just something to have fun. 

Third Day

The final day followed the same format at the second, with classes all day. Some classes were geared towards parents, others toward researchers or SLPs. When registering, all the classes were color coded, to let people know if it was a beginning/ advanced parent class, or a beginning/ advanced professionals class.

There are scholarships available, and I was awarded one for my first conference. The application was pretty easy, and they prefer to give scholarships to new parents or those parents who put in a lot of volunteer time to the Apraxia Kids organization- heading up walks to fundraise for research, etc. 

They held a raffle for a "Lunch with Lecturers", where you could buy raffle tickets to have one of the presenters all to yourself for the lunch hour, and ask anything you wanted. I didn't get drawn, but the parents who did said it was amazing!

After all the classes were over, we filled out surveys about our experiences with the conference- what we did/ didn't like, where we want a conference held in the future, topics we want addressed, etc.

The final thing we did before leaving back home was go to a panel about teenagers who have overcome CAS. Don't go unless you have water proof mascara on! I am not a crier, but I bawled when the kids up there, whose parents were told it was unlikely that they would ever communicate, spoke about their experiences learning how to talk. 

Teaching Reading to an Accelerated Child

After having Chelsea, I just assumed that in order to teach kids anything, you have to invest every fiber of your being, and then some. Then along came my second baby, and he wasn't at ALL like Chelsea. It was soon apparent that he was a highly accelerated learner. 

When he was about 2 and a half, he came up to me one day and said, "Mommy, I am sad because I don't know how to read by myself. Will you teach me?" 

I thought he would give up the notion in a week or two, so decided to humor him and teach him any words he wanted to learn to read. At this point, he already knew all his letters and associated sounds from observing me working with Chelsea.

People always ask how long I spent teaching him each day. In addition to the typical 30 minutes of reading aloud I did with the kids, I would invest about 10-20 dedicated minutes of doing activities with him to teach him to read.

Letter matching game

So I started by showing him the names of our family, and any other favorite words he had. He LOVED villains at the time, so instead of learning the generic sight words, we learned things like "Gaston" and "Captain Hook". 

If he wanted to learn about alligators, we would get books from the library, trace words, make a craft and have him sign his name, all sorts of fun. Sometimes, it seems like people believe that learning to read is a chore. It is fun and exciting!!!

Since he already knew the sounds that all the letters make, I picked up some phonic reading books at a yard sale, and had him read those. The only problem we ran into with those was that they were so short and easy, he would memorize the book within one repetition! 

To combat the memorization, I would cover up the picture and flip randomly to pages so the story was out of order, and point to words to have him sound it out. We used the EyeQ Phonics to teach him how to sound out words, and learned all the "regular" sight words just by reading and pointing them out. 

I also made sure that books were very, very accessible. Yes, some books ended up mostly taped together, and a few ended up in the trash, but tossing $10 worth of used books in order for my child to learn that books are important was very worth it to me. 

And on that note, we would give books for every holiday/ birthday. When out and about, instead of stopping for ice cream, we would stop at the thrift shop and pick up a new book for a prize. All those just to show the kids that reading is valuable. 

We did reading games every day. His favorite was the flyswatter game. I would have cards placed all around our house, or taped onto the play structures at the park, and would give him a flyswatter/ sword. I would then call out a word, and he would race to swat the correct one. 

I really liked this game, because he was motivated to read and always had a LOT of energy, so this combined the two, and a multi-sensory approach is the best way to learn!

We also had the Super Why board game, and he mostly watched Super Why or Signing Time for his screen time each day, which both promote early reading. Any time we would watch a regular movie, I always turned on the subtitles. 

We would do rhyming games, puzzles with words on them, sing nursery rhymes, and read poetry, all which help reading skills. We would also make "word family" strips, so write "at" on a card, then have a paper to pull through and read cat, mat, vat, rat, pat, bat, etc.

We would make books about anything the kids wanted to learn about. We would draw pictures or stick down stickers, then they would trace the words I wrote down, and we would point out each word and say what it meant. 

We also would incorporate reading into any activity/ outing we did. When going to the zoo, we would bring along a scavenger hunt with all the words written next to the pictures.

Chelsea had independent work activities that I would also let Ryan use, and he loved to be timed to see how fast he could do everything right. 

Once he was able to read independently, I made sure to never stop reading to him, but when I read to him, I would ask more comprehension questions about the book. No point in learning to read if you don't understand it!

Maybe I am too tough on Ryan. After having Chelsea and drilling her with therapy every day, I expected Ryan to be able to work on something that was hard for him and not give up.

The funny thing about that is- when I tell people that I do therapy constantly with Chelsea, I get lots of "Wow, that is amazing! Good for you!!! She will really appreciate it later in life!" 

But when I say that I make Ryan work on something difficult for him at least half an hour to an hour a day (a fraction of the time I have Chelsea do!) I get comments like, "Aw, just let him just be a kid!" or "Preschoolers don't need to know how to sit and work yet. They learn all they need to through play."

My thoughts- HELLO!!! Reading and learning IS fun!!!! If reading and learning aren't fun, you must not be doing it right!!

What is PECS?

When Chelsea was very young, about 1-2 years old, we had no sign language, no words, no communication at all, so I ended up using PECS, which stands for Picture Exchange Communication System. 

BEST. THING. EVER!!! I didn't use an official program at first- I just wanted a way to get Chelsea to express her needs.

Our First PECS cards:

1. I took pictures of some of her favorite things

2. I put the pictures on cardstock

3. I labeled the pictures (keep up that early literacy)

4. Laminate!

5. Attach magnets to the back

I put several of these cards low on the fridge where she could reach them even before she could walk, and she would come give me the picture of what we wanted. 

Immediately after she gave me the card, she would get that item! I wanted to really emphasize to her that communicating will be rewarded! 

Wait, Won't That Delay "Real" Communication?

Not at all. PECS does count as communication- she is sending information about her needs, and I understand it. Additionally, there are lots of ways you can use this to 

When Chelsea would come give me a card, I would model the language, "Oh! I see you want cottage cheese!" then have her either do the sign for what she wanted with hand over hand, or do the first sound of that word. 

So we got in the visual cue (card), auditory cue (the correctly modeled word/ her saying the sound), AND a tactile cue (the sign language!). The BEST way to learn is through a multi-sensory approach.

The Next Step
After several weeks of using this system, Chelsea handed me a card while her early intervention speech therapist was visiting, and the SLP introduced me to the official PECS system. 

With her help, I made a binder that had several different categories, each with their own page. So we had an activites page, a family page, a feelings page, a couple food pages, and things like that.

The idea here is to expand the language. So start with the "I want" picture and then put on the picture of the desired item/ activity. Eventually, the child is supposed to work their way up to forming complete sentences. 

Our Results:
PECS worked great for us for about 2 years. After Chelsea was 3, she really started to pick up sign language, and we focused on that and speech, and dropped the PECS. 

The pros for dropping PECS- sign language is much faster and you don't have to carry around a big binder everywhere.

The cons- not everyone understands sign language. In fact, very few people do. So even though it was faster for her to sign, she had a smaller group of people that understood her. Everyone can understand a picture with words on it.

A Couple Tips:

• Don't just use one kind of picture. Alternate real photographs and clip art type of pictures so your child will learn that either can be used for communication.
• There are kids who only used photographs, then won't respond to or use cartoon pictures
• Only put out the cards you are willing to give right away when first starting. There will be lots of frustration otherwise