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.  

Regular Therapy

It's been about 6 weeks since my last post!  Now that Nate is back in school, the days are going by quickly.  Since about mid-September, Nate has been receiving 6 speech sessions a week.  Twice a week in our local school district, twice a week at his school, and twice a week at the Truesdale Center (part of the University of Redlands' speech pathologist training program).  In total about 4-5 hours of therapy a week.  This is what we've been working hard to get, regular, consistent therapy.  I'm just not sure if having it with 3 different people is the right thing.  I'm working on trying to keep the 3 SLPs "coordinated", but they all seem to be doing slightly different things.  Good or bad?...I'm not sure.  So how is his speech now?  Not much different so far.  He is repeating some words a little more easily and will repeat them one or two more times after we've stopped saying them.  Just today after I prompted him to say "want Al" (his favorite Alligator) and we repeated it several times together, he said it on his own.  Some progress!  But it's still pretty intelligible.  One of the supervising SLPs at the University of Redlands said that with Apraxic kids, progress can be slow, so we're just taking one day at a time.

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!

Conundrum

Nate is finally receiving his ESY sessions.  After much phone calling and message leaving, I finally got a hold of the summer school SLP.  For some reason Nate was put on the kindergarten student list.  Not quite sure why, given that he's 3, but he's finally had a couple of speech sessions.  I'm not sure what good it's doing, as this particular SLP has not worked with him before, doesn't know much ASL but she is getting some cooperation from him.  He's more willing to work and imitate sounds now. 

Nate's now had two session with the OT through our health care provider.  I wasn't able to take him to his most recent session this past week but my mom (AKA Grandma Emmy) was.  Here's what she had to say about the session:

Nate spent most of the time at the beginning exploring the room, going from one thing to another.  He even went into the closet areas.  He took the roller coaster car and pushed it back up the track to the top.  When she turned it around (because it was backwards) and asked him if he wanted to try it, he moved on to something else.  She hooked up a platform swing and invited him to sit on it with her, and he moved on.  And so on.

 

When she got out a large plastic tub with rice and shovels and plastic animals, and a toy you could scoop the rice into at the top, causing wheels underneath to spin as the rice dropped down, he sat with her and played.

 

After awhile, he got up and found a beach ball, and tossed that around.  She persuaded him to go up the steps to a platform, and when he did, he chose to toss the beach ball down the tube slide.  Then he went down the slide.  The second time he did this, he tossed the beach ball over the climbing cargo net to me.  Then when he went down the slide, I tossed the ball so that it bounced near where he came out of the slide.  We did that several times, and then it was on to other things.

 

Earlier she had showed him how to straddle the tire swing, but he wasn't interested.  So now he returned to the tire swing, and swung on it with his belly.  After a bit I was able to have him straddle it and hang on, "riding the horsey".  Then he went over to the platform swing and sat on it, and she gave him a foam pegboard, with large pegs.  He did a few of those, and then decided to ride on the roller coaster car.

 

About then the session was ending, so we discussed how he probably watches his brothers to see how things are done, and may not do enough experimenting and exploring to figure out things by himself. 

 

She doesn't really see any gross motor problems, but said that some fine motor skills can be worked on.  She said that his speech obviously is the main concern.  And that "he is a conundrum".

 

The OT is working to set up something with this pediatrician where Nate will have an OT session, we will be given some goals and tasks to work on at home and then return for another session.  I'm satisifed for now with that because at least we're getting some additional support for him.

 

We are still waiting to hear if Nate's Montessori preschool will receive the grant to cover the cost of its SLP and OT services, but in the mean time I did receive some good news that although the funding is not there for the summer, the school's director approved to pay for the cost of OT and Speech through the summer for a few of its highest needs kids-Nate included.  So Nate should be receiving some Speech and OT more regularly again, starting in the next week.  I just wish that the therapy was more consistent. 

Summer Vacation

It has been a rough couple of weeks and I'm glad that all my boys are off for the summer, so there is some down time instead of the constant go go go.  With the end of Nate's twice a week speech therapy with the school district and the end of the school year, he hasn't had any therapy for about a week and a half.  I have been calling the school district about his Extended School Year (ESY) services and I was told nearly two weeks ago that the summer school SLP would be getting in contact with us and that services would begin on the 21st of June for five weeks.  Since I had heard anything, I called again on the 19th and left messages for several people.  It's now the 20th and I have not heard a thing.  It's frustrating when I have to be the one to follow up on things like this.  In addition, I do not know if Nate's private school will continue to have speech services and OT services through the summer or even next year, as the team there had to reapply for a grant to cover their costs and they will not know the outcome for another couple of weeks.  On one hand, I think maybe we should just take a couple of months to rest and relax and enjoy the summer, free from school and running around to therapy appointments.  On the other, I know that Nate's CAS is not just going to get better overnight and that he needs weekly, if not daily focused practice.

At the beginning of June, Nate went in for an OT evaluation through our medical provider.  It was an interesting experience.  I could tell the OT had a lot of experience working with 3 year olds as she was very patient in getting responses from him.  She began with the fine motor types of activities, like building things with blocks and cutting.  She then moved to the gross motor skills, such as walking backwards, standing on one foot and jumping.  Since there are not very many kinds of standardized assessments for preschoolers, some of the assessment pieces he completed were similar to those he had done the week before with the OT at his school; even though they were different standardized assessments.  This OT was puzzled by his gaps and we have another appointment scheduled next week.  Some of the gaps may have to do with limb apraxia, such as when walking upstairs, he will only use his right foot, instead of alternating.  Some things are more difficult for him to do on command, but come naturally when he is not having to think about the motor planning to go with the movement.  Something else that is odd with Nate, although we strongly feel that he's going to be a lefty, it that he will use whatever hand happens to be available at the time.  Maybe he is mixed-handed or ambidextrous?  We have been told, although he is not showing complete dominance, that he shouldn't be forced to use one or the other. 

Later that day, I had an appointment to meet with the SLP and OT at his preschool to go over the results from their assessment.  They had videotaped the session from the week before.  This assessment was done in reverse, in that the OT had Nate doing all the gross motor skills and then the fine motor skills.  As I watched the video, I noticed some odd behavior.  He was not doing anything that they were asking him to do most of the time.  He'd just stand and stare.  It was very strange and very upsetting.  I don't know if he was just not understanding, although everything they asked him to do, he knows how to do.  Or if he thought it was strange that they had him using equipment in a rearranged room as well as have someone he didn't know there filming him.  We've always had a hard time getting him to "perform" activities that he can do on his own, could be part of limb apraxia?  In debriefing the assessment and video with the OT I got very upset.  I have felt that this particular therapist thinks that Nate is retarded and told her what I thought.  She is someone who did not agree with me, when I first felt that Nate had apraxia and has continued to maintain that he does not have apraxia.  It felt good to put how I felt out on the table, although I know that sometimes I'm not the most tactful person and I know that I should not attack those that are trying to help my child.  I'm just not sure what it is, but I do not feel that she sees the Nate that the rest of us see--A highly aware and observant child.  I know that he has difficulties but I don't believe she sees beyond that or around those things to see who he really is.  I have always felt that Nate copes with his disability by just not attempting to do things he knows he cannot be successful at.  It becomes extremely frustrating when you are not only having to fight to get therapy for your child but you have to fight or educate the people who should be the ones helping him.

In the end, we know that on top of the speech issues, he has some fine and gross motor issues as well.  So I'm still back at square one.....how to get him regular and consistent therapy year round.

How old are you?

This weekend we went to Legoland.  Nate has been there before, but he was too little to remember.  We were all very excited to be there, as there is plenty for all 3 of my boys to do.  One of the first things we wanted to try out were the cars.  Kids from age 3-5 years can drive their own little lego car, pushing on an accelerator and steering around an oval race course, all without a set track.  As we got closer to the front of the line, we realized that the Legoland employees were asking the little kids how old they were.  I guess to make sure they were older than 2 and younger than 5?  My heart sank.  I was wondering if they might not let him on the ride because he can't say how old he is (because of the verbal apraxia) and even showing with his fingers is difficult (possibly limb apraxia?).  I was secretly hoping they'd skip over us, but when it was his turn, the young girl asked.  Randy was holding Nate at the time and told the girl that he couldn't talk.  She then asked him again and of course he said nothing.  She then showed him 3 fingers and asked him if he was 3.  He slightly nodded his head at the same time turning away to hide his face because he's a little bit shy.  He looked at her again and she repeated the question.  By this time I was tired of her asking, so I pulled out his Legoland membership card (you have to pay for kids age 3 and up) and told her he has a membership card, he's 3.  She quickly replied ok and went on to the next kid in the line.  I felt awful for Nate.  He can't even say his name, let alone how old he is.  In the end, he had a wonderful time on the ride.  We were so proud, he drove his little Lego car so carefully and while other kids were bumping into each other and into the curbs, he drove very well.

This week we have an evaluation with an OT through our health care provider as well as an appointment to get the results of some additional OT assessments that were completed at his school.  Although most physical things that Nate does are pretty normal, there are some things that he still has trouble with.  He still hasn't completely demonstrated his handedness, although we know he's a lefty.  When he walks up stairs, he always uses his right foot and running is still awkward looking, although he does move pretty fast.  So we'll see what new information this brings.

Through the CASANA website, I receive a monthly newsletter with updates and all sorts of information.  This month they included a link to a short documentary about a 4-year old girl, Evangelique, with severe CAS.  It was interesting to see some of the similarities (reflux/GERD and the struggles to speak) but also to see how this particular girl's struggles were even greater than Nate's.

This past week was Nate's last few sessions with the SLP in our school district.  Teri has been amazing and so supportive.  She was the first to confirm that Nate's struggles might be CAS and has got him saying or trying to say a few more things.  More than he was 3 months ago!  We are going to truly miss her and we can only hope that her replacement is as good with Nate and cares about him like she does.

Normal Speech

What is normal?

 

nor·mal

–adjective

1.

conforming to the standard or the common type; usual; not abnormal; regular; natural.

I've been wanting to get some videos posted, as a way to share Nate's progress in therapy.  This is Nate's normal speech.  Normal for him but abnormal in comparison to how a 3 year old should be talking.  Here he's saying something about a puzzle piece he's working with during one of his speech sessions.  Sometimes you can pick out things that sound like "words", usually just the vowel sounds in the syllables, but here, I'm not really sure what he's saying.  

Nate's been going to speech through the school district for almost 3 months.  He's getting better at some of the individual sounds, like /p/ and /t/.  The sound for t is one that's easiest for him.  Here, he's working on the word tree.  He knows the sign and his speech pathologist is trying to get him to say tree or a version of it (tee).  Some of the things I've read about working with apraxic kids, suggests that approximations of words are a good focus as well.  They've also been working on some hand signals to go along with the place where the sound is made, like the t sound being made in the front of the mouth, as opposed to the k sound being made in the throat.

     

One of the sounds he really struggles with is /s/, like in snake.  Instead of blowing air out of his mouth, he approximates the sound by blowing air out of his nose.

Here he's trying to say the word book.  Sometimes he can say the individual sounds, but many of the times, he's groping to find the right sound to say at the right sound and that's not even being able to string them together into a quick and complete word.

And finally....the word that I'm hoping he'll one day be able to say on his own.  He can make all the individual sounds for it, but stringing it together and using it is a whole other thing....

Some days are harder than others, when I think about all the conversations we're missing out on with him, or that he's missing out on with us.  He finds other ways to communicate with us, so it's not like he's silently watching the world go by.  I just often wonder if he'll ever learn how to talk.