AAC

The CASANA conference was amazing!  I'm so glad it was local and that we were able to go.  To be in a place with so many other people who understand what its like to have a child with CAS was reassuring and inspiring.


I learned more about AAC (Augmentative and Alternative Communication) devices.  I've read a little about these types of devices (as simple as picture card to as complex as computers like what Stephen Hawking uses).  They increase social interaction, allow increased information sharing and help create a self identity by lessening frustration by enabling communication.  


Unfortunately not many people are trained in using AAC devices, particularly the more high tech tools.  When creating an IEP, an AAC or AT (Assistive Technology) devices need to be included.
  
Funding for an AAC can be complicated, but this is an interesting resource: AACfundinghelp.com.  This website has a lot of information including funding sources, vocabulary or terms that show up on applications for devices.  


The most important realization that I had was that AAC devices are more than just enabling someone to make requests but are language systems.  Teaching kids how language functions--communication and dialogue patterns, being able to socialize with peers, and literacy skills.  Kids with language delays or disorders need to now how to use abstract language.


Some additional resources:


International Society for Augmentative and Alternative Communication-- works to improve the life of every child and adult with speech difficulties.


Center for Applied Special Technology--To expand learning opportunities for all individuals, especially those with disabilities, through the research and development of innovative, technology-based educational resources and strategies.


Assistive Technology Exchange Center--comprehensive assistive technology resource center that is one of Goodwill of Orange County’s vital health and human services programs-offer consultation and assessment services, equipment trial, equipment loan and reuse and support in learning how to use assistive technology equipment.

And a quick video showing one of the many electronic devices that allows all types of kids with communication disabilities to communicate:

It Takes 70 Muscles

Here's just some highlights of things I learned at the conference...

How to Navigate the world of CAS by Sue Caspari, CCC-SLP

• It takes 70 muscles (including 8 body parts) to utter a single syllable word!
• We can say 14 sounds in a single second..... like in the phrase "peanut butter cookies"!
• By the age of 2 - 3 years, most normal children have all the vowel sounds in English
• CAS is the breakdown in planning and programming of speech movements--where in space to move, when in time to move, and how fast to move
• It is a "discoordination disorder"
• Some things it is NOT: an intellectual deficit, incurable, or outgrown
• ASHA has a position statement on CAS, but there is a serious lack of well-controlled treatment addressing what interventions are most effective, this makes receiving proper diagnosis and treatment difficult ( I know this all too well! )
• What ASHA does recommend is 3-5 sessions of individual speech therapy a week

The Kaufman Speech to Language Protocol by Nancy Kaufman, CCC-SLP

Nancy Kaufman's presentation included a discussion of her materials (which I've talked a bit about in an earlier post).  It was exciting to see her and her discussion of strategies to use for cueing.  Many of which I want to use more of with Nate.  

She talked about how you should always build on the child's repertoire and increase the words and syllables used.  Functional words like (on, in, off, go, yes, no, help, etc.) are incredibly important as well as working towards what she calls "pivot phrases", such as: put on ______, help me ______, I want ______, or more ____.  Nate's been working on some of these, but I can definitely see where he needs to work on more than just the few that he's been using.  It's important not to just focus on nouns, but all of the parts of speech.

Cues she talked about:

• visual/tactile (signs, gestures, physical reminders)
• cognitive (explaining where to place lips or tongue...although there is some research to support that visual cues work better for apraxics than telling them what to do)
• oral posturing (forming the shapes of words with your own mouth, without voicing)
• contextual cues (fill in the blanks for songs, rhymes, books....she showed us this amazing video of a girl who could hardly speak, but could much more easily fill in the blanks in a song!)
• pivot syllables (practicing words with a syllable that is the same: bunny, money, Ernie, Winnie, etc.)
• giving the answer first and then asking the question (ex: Look at him riding his bike.  What is he doing?)  I particularly like this cue and plan on using it more as it gives a quick cue as to what words to use so Nate may be able to get his mouth coordinated a bit better.
• deletion of vowel in monosyllabic words (ex: for the word cup /cu/ /p/ instead of /c/ /up/)
• whisper cues (whisper the word)

I definitely want to use more cues, especially the giving the answer first and then asking questions.  And finally I was reminded that its not enough to just say good or good job, it's important to give specific feedback. 

Conference

Tomorrow we leave for the CASANA conference!  Four days in sunny San Diego.  I'm looking forward to the sessions and meeting other families and speech pathologists.  I'm going to try and write a post or two while we're there.  So excited!

Celebration!

Nate celebrated his 4th birthday a couple of weeks ago with friends and family.  He had a great time!  I remember that just two years ago, blowing out candles was a difficult thing and this year, he had no problems!

The weekend after his birthday we went and had some fun in the snow.  Nate really enjoys the snow and has been wanting to go all winter long.  He did some sledding and had a great time.  Here's a quick video of him sledding on his own for the first time.  He had so much fun that he didn't want to stop!

This past Friday we had a follow-up appointment with one of the developmental pediatricians we had seen nearly 1 1/2 years ago.  I think we spent nearly an hour with her.  She had him perform some different tasks and went through all the different questions about development, speech and coordination.  She felt that since the his speech issues are motor coordination, that speech should be covered by Kaiser.  She put in for an evaluation for speech (again) and to meet with a geneticist--to rule out any other genetic disorders Nate hasn't already been screened for.  Unfortunately at this point I think we're just at the wait and see stage.  With six sessions of speech a week, he is making small improvements with more spontaneous word attempts and signing, but with the severity of his apraxia it's going to take a lot of time and practice on his part.  Just the other day, he was wanting ice out of the dispenser and he said "ief" on his own.  Since approximations are what we want, it was very exciting to hear him say that, especially since he wasn't repeating after us!

I often like to read whatever I can find on-line about CAS and just today I found this news report on children with CAS.  It was on a local station in Pittsburg.  I really like watching videos and hearing about other kids with CAS.  It helps me feel better about the things we are doing for Nate.  It's been a while, so I will have to post some more updated video on Nate soon.

Inconsistency

Last week Nate had, what will probably be his final appointment, with a speech pathologist from Kaiser.  The appointment seemed like a waste of time.  The SLP didn't seem familiar with his case, although we had seen her about 2 months ago and the focus was on what I should be doing, instead of any real therapy.  At the end of the appointment, I asked her what speech services Kaiser did actually cover in children and the answers were strokes and some cleft palate issues.  Kaiser is not focused on treating kids but educating parents.  I understand the importance of this, but with CAS, regular, focused sessions are necessary to build muscle memory....more than what can be done day to day at home.  So even though he has another appointment with her this week, I'm going to cancel it.  I need to pursue getting something in writing from Kaiser explaining why they are denying services and begin exploring other insurance carriers to see if they cover speech at all.  I read somewhere that speech services are covered by medical insurance for those who have Federal Government jobs.  Randy and I toyed around with that idea.

And other bad news, earlier this week I received a letter from Nate's school going over their First 5 program.  They had been receiving funds to support their special needs program (paying for their OT and SLP).  Thanks to this money, during the past few years, the school was able to offer speech and OT services free of charge for students 5 and under.  Due to the current financial situation, not only locally but statewide, First 5 funding has been cut and the school did not receive the grant.  Nate's school is going to continue to provide speech and OT sessions but at a cost to parents.  I know that the cost per session is not what would be charged in private therapy, but it's still an additional cost on top of private school tuition.  In addition to that, the SLP that Nate has been working with for nearly 2 years is leaving the school to pursue other things.  This is really disappointing as well.  Initially she was not supportive of my thought that Nate had CAS when I was trying to figure everything out a year ago, but in the past 8 months she's been nothing but supportive, even researching strategies and techniques to help Nate.

I'm now extremely frustrated as not only will there be a new SLP for Nate's sessions with the school district, there will now be someone new at his school and if we pursue the sessions at the University of Redlands, someone new there as well.  All I want is regular, consistent therapy.  Is that too much to ask? 

On a positive note though, the CASANA conference that was held this past month in Philadelphia (would have loved to have gone!) is going to be held in Southern California next July!   It's an opportunity to hear the current research on CAS, to meet therapists and other parents who are going through the same things.  I can't wait!