16 Months

For quite some time I've been wanting to post some video of where Nate started and where he is now.  Nate has been receiving speech therapy since his 3rd birthday, about 18 months ago.  In May of 2010 I posted a few videos of words or skills he was working on, like book, tree, the s-sound, and mom.

Here's Book:

And Mom:

And here's Nate 16 months later-

At breakfast:

Practicing his words:

And a bedtime story:

He is blossoming in his Montessori class and is becoming more involved in group activities.  He has friends whom he enjoys working and playing with and is more comfortable in asking for help.  He is also attempting to respond more to questions verbally.  He has a long way to go, but the videos help remind me of where he's come from.

Little Things

Today Nate had photos taken for his soccer team the Lil' Cougars.  As he sat proudly on the bench with his team, a grin from ear to ear, the photographer said, "Say Lil' Cougars" and his smile quickly disappeared.  I had never thought about something as little as having him say cheese would not be easy for a child with apraxia or that it would upset him like that.  Afterwards I talked to Nate and told him that the important part was smiling and not saying what the person taking the picture wants you to say.  Definitely something to remember.

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!

Three!

Last week Nate put together his very first three word sentence!  No prompting-verbal or signs.  It was amazing.  He had been playing with some of his older brother's polished rocks and knew there were more in his bedroom.  He came to me and said "want more rock".  It made my day!  I calculated that he's had about 100 hours of therapy since September, plus all the repetitions we work on at home every day.  It's paying off.

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.

Spontaneity

Nate continues to have more and more spontaneous speech.  Some of the words we hear more frequently now (although unintelligible to some):

bowl      car      baby      park      here      where      ball      boat      water     more      want    wash     bike bug       look     walk      me        out        go    up       work     yes        no     ma    book    bird     horse

Even his name Nate as Nt!

Slow but steady...

Today one of Nate's SLPs wrote in his binder (which follows him everywhere), that he is making notable progress.  This is very exciting!  He is spontaneously using more word approximations and signs.  Just tonight at dinner, he noticed I took his fork and he said "ork"!  Lots of new approximations and word attempts.

I have an updated video demonstrating some of the words that he is able to do very clearly and others he still has trouble with.

We've been practicing showing numbers with his fingers and he's getting pretty good at it now.  It had been difficult for him due to some slight global apraxia issues.  He literally use to have to use one hand to hold down the fingers on his other hand in order to demonstrate the right number.

In my last post I spoke about the Kaufman cards and how these cards are used in the treatment of apraxia.  It got me looking around on-line and although expensive, I was able to find a set for sale on ebay at a reduced price.  We have been practicing them at home and Nate is excited to be using something he sees in therapy.

In July, he Childhood Apraxia of Speech Association of North America is having their annual conference in San Diego.  It looks like there's going to be some great presentations, ranging from:  A Map for Caregivers Unraveling the Mystery of Treatment, Using Symbolic Gestures to Facilitate Speech Motor Planning and Literacy Development, and AAC and Apraxia: Perspectives from a Parent, a Teacher and an SLP.  (AAC stands for Augmentative and Alternative Communication, which can be anything from pictures in books to facilitate communication or even high-tech iPads or computer devices specifically used for communication.)  I need to get registered and decide which presentations to attend!  I'm looking forward to getting the latest information on CAS research as well as connecting with other parents of apraxic kids.

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.

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.

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".  

In Your Silence

In Your Silence

In your silence I hear your fear,
Your need to have me always near,
The fear you won't be understood.
Speak my child - if only you could.

Some people don't know, they say "She'll be alright!"
They don't see the pain, the anguish and fright.
You understand all that they say and infer,
Yet you cannot respond - a pain you incur.

My love for you is simply not enough,
To get you through life, at times will be tough.
But I will help you grow with all in me,
You shall find your voice, this I guarantee.

Your voice will be strong, your words so proud.
You will one day stand tall and speak out loud.
You won't fear anymore, not being understood.
It is then that we'll know we did all that we could.

So for now in your silence I hear your fear,
Your need to have me always near.
The fear you won't be understood,
One day will be gone - it will be gone for good

-Sarah Grainer