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. 

Late Blooming or Language Problem?

I came across an interesting article published by the American Speech-Language-Hearing Association (ASHA) the other day, titled Late Blooming or Language Problem?  It has some useful information about the differences between language problems and possibly just late blooming kids (although I've ready that its fairly rare for late blooming talkers to be without some kind of learning disability entirely--see the book The Late Talker).

The article reassures parents that if you think something is wrong with the way your child is speaking or their lack of speech, get it checked out.  We know our children best.  The wait and see approach to communication is not a good approach.  Language skills are developing so quickly that missed milestones could mean something, that if left untreated or without therapy, could be even more detrimental in the end.

The article describes certain factors that late-talking children who are 18-30 months old, with normal intelligence, may have continuing language problems.  These include:

• gesturing-the number of gestures by "late-talkers" with low expressive language may indicate later language abilities, as it seems those with more gestures were more likely to catch up to peers (this may be a great support for using gesturing and ASL in therapy)
• age of diagnosis-the older the child is when diagnosed, the less positive the outcome...so important as a parent to trust your instincts and get an evaluation and therapy as soon as possible.  I wish Nate had received more intensive speech therapy when he was younger, but all too often I came upon resistance by therapists and doctors to treat his speech delay
• progress in language development-even if a child is delayed in speech, if they are trying to use speech in new ways at least every month, without demonstrating this there may be more language issues than just being a late talker

Some of the research available contrasts other research, as there is still much work to do be done in this area.  

Childhood Apraxia of Speech has general signs according to ASHA--

      

     For young children:

• No cooing or babbling as an infant
• Only a few consonants or vowel sounds
• Problems combining sounds
• May have problems eating

     Older children:

• Inconsistent sound errors
• Understands language much better than they can speak
• Difficulty imitating speech, but imitating is easier than spontaneously speaking
• May grope when attempting to produce sounds to coordinate lips and jaw for speaking
• Is hard to understand, especially for unfamiliar listeners
• Difficulty with fine motor movement/coordination

These are just of some of the characteristics of a child with CAS and those that I listed are the ones that Nate exhibited or continues to exhibit.  I'm glad that I trusted my instincts with Nate, and although I had to keep pushing and researching on my own, he's now getting the therapy that he needs and his expressive language skills are growing every day.

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.

Nothing New

Today we saw another SLP, this one through our healthcare provider.  The end result was neither good nor bad, so I guess that's a good thing.  She didn't ask any of the annoying questions or make lame statements like we've become use to (i.e., he's a boy and they sometimes talk late or are his older brothers talking for him?).  At the end of the appointment, I thanked her for that.  She laughed and said she had been doing this for a long time and wouldn't ask things like that.  She read through Nate's IEP and agreed with the dx of either CAS or a phonological disorder.  It was nice to hear that confirmed.  Since our healthcare provider will only provide speech services when it's medically warranted, there's probably not much she can do.  So we'll be going back in about 3 months to see what progress is being made with his current therapy and maybe something more definitive as far as an official diagnosis.  She said that we're doing all the right things.   For me, it just doesn't feel like enough because he's not talking yet.  I just want everything to be fixed right now.  I know I need to be patient with it all and allow for more time.  We also talked about how the quality of the therapy is more important than the quantity and hopefully starting in the fall he'll be spending 2 times a week with the school district and another 2 session with the local university.  But until then, the focus really needs to be on continuing what he's working on in therapy, at home.

I was able to sit in on another therapy session with the school district earlier this week.  He's really working hard on his individual sounds and learning new signs.  A friend of mine got me some Signing Time videos, I've been wanting to get a few of these to use with Nate.  They are really geared towards toddlers and preschoolers and he enjoys watching them.  We're definitely going to have to work on more signs.  While we sign we are also working on the sounds, right now it's mostly initial sounds but it's a start.  The hardest part of the signing is remembering to use the signs throughout the day.  Since he understands everything, it's not natural to sign along with what we're saying to him but I'm sure if we sign more often, that will help him use it more too.

I'm hoping that in the next few weeks we can start video taping some of his sessions to have samples of the progress he's making.  Sometimes it's hard to see the changes when you're right in the middle of it all.