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

Small Steps

In October, we had our list visit with the Kaiser OT we had been seeing all summer.  She had been working with Nate and assessing him but did not find anything that would qualify him for OT services.  He has many inconsistencies (or what I like to call--conundrums).  For example, when he goes up stairs, he does not usually alternate legs, unless we stop and remind him.  He is also inconsistent with his handedness, still using which ever hand is closest or available at the time.  His teacher is concerned about his pencil grip, which could be something he should be seen by on OT for, but I'm sure at 3 1/2 years old, they are not as concerned with pencil grip right now since in public school, most kids don't encounter writing until preschool or kindergarten age at 4-5.  He is being seen by the OT at his preschool a couple of times a month, so that will do for now.

Nate's school had their parent-teacher conferences this past week and the whole team was there.  His teacher, the schools' SLP and OT, the part-time school psychologist, and the school's principal.  It was good to see everyone together as a team as it can be challenging to coordinate all the different services.

He has been working on approximations for several words including more, up, and out.  The SLP at his school has been using ASL as a cue for him to use those words.  It's as if, even though he can now approximate several words, they are not automatic for him to use.  He will use them if he is signaled to do so.  His signing has increased, which is a good thing, as all 3 of his SLPs have been using ASL with him.  Just today, as he was looking at the snowy covered mountains, he was signing for snow and brought me his mittens.  Guess we need to take a trip to the snow soon!  

I put together a short video of some of the words he's been practicing.  We work on these almost every night (in addition to in-context repetitions throughout the day).  Some words he can say more easily, others you can clearly see are hard for him.  Because of CAS he doesn't know where to make the appropriate placements in his mouth or how to move his lips.

Through many of the blogs or Facebook apraxia sites I read pretty regularly, I came across this article written by an early childhood consultant about her experience with her son's apraxia.  I always find some comfort in reading about someone else's experiences as it confirms what I already know, like this part:

          "The difference between a speech delay and a speech disorder is that in a delay,

            the child follows a typical path of speech development but at a slower pace.  For 

            the child with CAS there is a significant gap between their receptive language

            abilities and their expressive language abilities.  In other words, the child's ability

            to understand language (receptive ability) is broadly within normal limits, but his

            or her expressive speech is seriously deficient, absent, or severely unclear." 
So Apraxia is not a delay, due to the huge discrepancies between comprehension and expression, it's a disorder.  Although I often feel that he will never learn how to talk (how I yearn to have a conversation with him that doesn't rely on hand gestures or a complete reliance on context) I am cautiously optomistic that he will learn how to speak.  "The outlook is promising however and most Apraxic children overcome this speech disorder if they receive the appropriate, intensive speech therapy early on."  I have to remind myself to take one day at a time, one small step after the other.  

I am very excited that Childhood Apraxia of Speech of North America (CASANA) is having their annual conference in San Diego this coming summer.  At this conference they have presentations on current research and it will be a great way to connect with other people.  I'm looking forward to it.