Working Hard

Here are some short clips of Nate working on speaking and reading in complete sentences.  He still struggles with correct use of articles.  Since CAS is a motor planning disorder once his mouth gets going he starts to say things from rote memory (which you can see in this video) when he is creating a sentence about 5 shovels.  He has practiced saying "I see the" or "I see a" so much that when he needs to say something else, it's difficult.  The SLP here uses cards with words or sometimes just dots on a page to represent the individual words.  Since we are working on improving his reading and number identification skills he has been doing more work with print.

(These videos were done in October)

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. 

A Session

Although on spring break this week, Nate still has several of his speech sessions to attend. This morning we went to the session at the Truesdail Center. He missed a few sessions last week because of being sick, so he was a little apprehensive when his therapist appeared.  Today was a really good session.  I read the daily notes from his SLPs but it was nice to see him in action as I don't always get to see this. He's working so hard and cooperating, most of the time--he is only 4 after all!

The Truesdail center consists of a long hallway and off the hallway are multiple small rooms that are used for the sessions, each with observing windows where parents or other students can sit and watch. Because he was being shy today, I decided to sit in the room during the session and participate. This SLP in training has begun using a short schedule with Nate, briefly going over the activities they would be completed and allowing him to check them off as they work through them. The menu for today's hour was fishing, squiggly worms, beach ball and then free choice. The fishing game was all set up when we got in the room.  Using a fishing pole with a magnet attached to the end, Nate picks up small foam fishes, about the size of a playing card with a picture of a focus word attached to the underside. So Nate "fishes" for a word and then practices saying it several times. We all took turns with this game and worked on different words with the /b/ sound: burger, boy, ball, bottle. The /b/ sound is difficult for him as he generally makes more of a /p/ sound.

Next was the game squiggly worms. For this game, we played a game that has an apple shape with a bunch of worms and when you turn it on they move up and down inside the apple and you have to try and grab one to match to your card. In order for Nate to get a turn grabbing a worm, he had to practice saying some sounds from a program called Kaufman speech practice cards.  This is a program that Nancy Kaufman, a SLP in Michigan, has created for use with Apraxics and uses at her well known clinic.  They break down words from the most complex (the actual word) into more simple forms.  For example apple (which Nate can say) becomes a-po....a-puh....ah-puh....ah-o.  From complex sounds to least complex in order to work on a target word based on the least physiological effort.  This way, Apraxic kids can start working on communication at their own level as Apraxia requires multiple (multiple!) repetition of a word before connections are made and it becomes automatic.  So Nate practiced words as we all had fun picking squiggly worms from an apple.

When that activity was done, he reviewed his checklist with the SLP and checked off what was completed.  The last task, before free choice was using the beach ball.  The goal here was to have Nate say a word or sound as he hit the beach ball.  We started with "up" as that it a word that is very automatic for him now and we hit the ball around for several minutes.  He loves balls and being physical, so he had a great time doing this.  The next sound was /b/.  It was interesting to watch him as having to coordinate his body and say something.  That is extremely difficult for him to do all at the same time.  It  was nearly impossible for him, but that didn't keep him from trying.  His little mouth would move and twitch trying to get it to do what he wanted it to.  Most of the time he'd say the sound and then we'd toss the ball to him to hit.  We did that with /b/ sound and then the word "ball".  After a successful check off on his list, he chose to play with some cars and had a good time knocking over his SLPs dinosaur as she chased him around the room.  She has a lot of energy which really keeps him engaged.

Since we're on vacation this week, I want to work on posting some new video clips of his progress, so hopefully soon.  He's making baby steps and tries to imitate so much more now that I know things are slowly coming together.

Frustration

Today was Nate's annual IEP review where we met with his SLP in the public school and went over his goals and future services.  In attendance was the SLP from his Montessori school as well as his teacher.  We are fortunate that he attends a school where the teachers and staff are so willing to be a part of the team effort to help Nate.

It was a frustrating meeting though.  The goals were set and even though the SLP suggested group services, I declined as Nate still needs the focused attention of one-on-one.  If he has the opportunity to be distracted by something or someone else, he will be distracted.  My husband and I signed off on the IEP.  The frustration was that we found out that when Nate hits kindergarten age (fall 2012) he will no longer receive services through the school district as he is a private school student outside the city we live in.  We were told that his IEP would become an ISP and that we could go to the school district in which his Montessori school is located and see if they would provide services for him.  But they do not have to honor the IEP, or now the ISP.  Immediately when I got home, I started researching this information and sure enough....

IDEA 2004 (actually finalized in 2006) states the following in regards to "parentally placed children in private schools."  (That's us!)

Equitable services are services provided to parentally-placed private school children with disabilities in accordance with the provisions in IDEA and its implementing regulations at 34 CFR §§300.130 through 300.144.

The regulations at 34 CFR §300.137(a) explicitly provide that children with disabilities enrolled in private schools by their parents do not have an individual right to receive some or all of the special education and related services they would receive if enrolled in the public schools. Under the Act, LEAs only have an obligation to provide parentally-placed private school children with disabilities an opportunity for equitable participation in the services funded with Federal Part B dollars that the LEA has determined, after consultation, to make available to its population of parentally-placed private school children with disabilities.

The consultation process is important to ensure the provision of equitable services. Consultation among the LEA, private school representatives, and parent representatives must address how the consultation will occur throughout the school year so that parentally-placed children with disabilities identified through child find can meaningfully participate in special education and related services. How, where, and by whom special education and related services will be provided for parentally-placed private school children with disabilities is determined during the consultation process.

Equitable services for a parentally-placed private school child with disabilities must be provided in accordance with a services plan. A services plan must describe the specific special education and related services that will be provided to a parentally-placed private school child with disabilities designated to receive services. 


So sometime next year, I will have to set up a meeting with the school district where his school is located and see what type of service plan will be made.  Whether or not Nate will continue to receive speech services is a huge question!  I think what makes me so incredibly frustrated with this is that I pay my taxes for public education, just like everyone else, and because I choose to pay even more by enrolling my children in private school, I negate my rights?!?  How can that be?  I'm just going to have to stop worrying about it until next year.

Last week Nate began a new session at the University of Redlands' Truesdail Center. Sometimes it's hard to start with a new therapist, having to go over what he knows or doesn't know, but at least the students we have had so far are eager. I know that the more information they have about Nate, the better start there will be to his therapy for the semester.

Nate still has six sessions of therapy a week.  Twice a week at Truesdail, twice a week in our school district and twice a week at his Montessori school.  The SLP at his school goes into his classroom to work on functional and academic speech. She also works on helping some of the students in his class use the signs and cues to help remind him of the words he needs to say.

We've been working a lot on the same words since the fall: up, out, in, no, apple, mom, dad, moo, baby, dad, happy.  Some more functional than others.  A few words are getting more clear and he can do them on his own, other words are still very difficult and you can see in the video, he sometimes will imitate the way a word sounds (like baby).  He often still gets /b/ and /p/ mixed up, although the only difference between the two sounds is one is voiced and the other isn't.

Some days are better than others and he still need continual reminders to use the words that he knows or can approximate well.  It just doesn't come "naturally".  

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!

Frustration

Nate is making some progress with his speech therapy.  According to both of his therapists he is able to make most sounds individually.  Now we need to work on getting him to put the sounds together for words.  So hard for him sometimes.  He almost has the word "up" perfected but many times it comes out only as uh or reversed... puh uh...

Some sad news (and frustrating news) we found out just today, that the SLP he is working with in the school district will be moving.  Her last day will be the end of May.  I've been able to see a couple of sessions and Nate responds so well that I'm extremely frustrated that he'll have only spent 3 months with her.  Who knows what we'll end up with next??  It worries me. 

Nate's doing well in his new class at his Montessori preschool.  Something that has been troubling me for a while, is that his teacher may not truly understand what Nate's condition encompasses.  We've shared information from the Apraxia-Kids website that included a very easy to read letter talking about what it's like to be a student with apraxia.  It's almost as if the teacher believes that because he cannot speak that he does not understand academics.  He had been working on a basic number activity and she wasn't sure he was really understanding.  The trick for Nate and his teachers, at least for now, is that they are going to have to find other ways to check for understanding that doesn't require a verbal response.  Today, he did choose to continue working on the math activity and tried to say three -- with his version of "th" which is kind of a "sh" sound. 

Next month we have an appointment with a slew of people for the "Asperger's" evaluation.  I'm apprehensive about this particular appointment as I know that is NOT what he has and am becoming more cautious about seeing different "specialists" who don't know much.  We are scheduled to see an Occupational Therapist, an SLP, a psychologist, and a social worker at this appointment.  Not quite sure why a social worker will be there, but it will be a learning experience none the less.

On a positive note, I've met a couple more families with children like Nate who are going through all of these things and it's so helpful to have other people around to talk to and who understand.  Facebook has been really helpful with creating these new connections.