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. 

Motor Planning

Came across this interesting article (The Effects of Motor Planning Deficits on School Function) on motor planning and its affect on success in school.  Although Nate is still preschool age, it's definitely on my mind how all this is going to play out when he's in kindergarten.  His teachers are concerned about his difficulty using scissors and I've noticed that it seems to be difficult for him to put on his clothes or runs a little awkwardly.  Toward the end of May we will be seeing some additional specialists.  I'm hoping that if needs some Occupational Therapy, he will receive services.  I don't think that his motor planning issues are severe but he may need some additional help.

We've been working with Nate his different oral exercises and encouraging him to say initial sounds as often as we can get him to.  The other day, his oldest brother was pouring him some juice.  We were encouraging Nate to say /j/.  He said it once and we tried to get him to say it again.  While we were repeating the sound, he tipped his head slightly downward and then looks at Julien and looks at me and back at his brother again, all the while with a sneaky little grin on his face.  He can be so sneaky sometimes.  After those little glances, he attempted the /j/ sound again.  We continue to take one day at a time...that's all we can do.

Two Words

I've almost recovered from the news that Nate is going to be losing his SLP the end of May.  I know he hasn't been seen by her all that long--about 2 months now.  He really enjoys working with her and she really understands what we're all going through and has been so supportive.  There are days where I'm not sure how this is all going to work out.  I'm hopeful that he'll be talking soon.  The other night at dinner, I asked him how his day at school was.  Maybe I was wistfully hoping that he would just start talking about all the things the he did, the numbers and letters that he's learning or who he played with.  It made me sad when he just smiled and uttered some vowel sounds instead.  I'm hopeful that he'll have more words soon.  He almost has the word 'up' and hopefully 'mom' will be next!

We finally received the local university's speech report from his evaluation the end of February.  If you've never read a report of some kind about your child, it's always interesting to hear someone else's description of your child.

Nate is a friendly, active child who demonstrates age appropriate receptive

language, play, and pragmatics/skills.  His comprehension of language 
appears stronger than his expressive abilities.  (Always nice to have what you
already know confirmed by an 'expert')...He experienced difficulty imitating 
various mouth shapes, vowels, and particularly consonant sounds.

This isn't the first report we've received Nate but it's funny to hear your child described in some official document.  In the end, it was recommended that he receive services there at the center for communicative disorders, twice a week.  This should begin in the fall when the school's semester begins.  Until then he'll continue to receive services twice a week through the school district and once a week at his preschool.

On Friday, Nate and I were working in the yard and he wanted to help me water plants.  I filled a watering can with water.  When it was empty he came over and through his sounds and his holding the can up for me to see, I knew that he wanted more water.  In order to get him to try and use words more often (since we're so good at "reading" what he wants, he always opts for the easier way), I had him sign and say /m/ for more and say water (his version is aw-er).  He actually put the two words together and said /m/..../or/.....aw....er.  That was the most I'd ever heard him say!  He was excited he said it and excited to get to water the plants some more.  Even though he's only had 2 months of regular therapy, I've definitely seen more improvement in his attempts at words.  

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.

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.

Say What?

Just got a call from the developmental pediatrician we saw earlier this week.  She's recommending we have Nate assessed for Asperger's Syndrome.  Ok, so this has really caught me off guard.  There's no way!  If you're not familiar with Aspberger's, here's a list of the characteristics:

• Appears to lack empathy
• Does not pick up on social cues
• Unusual facial expressions or postures
• Preoccupied or only a few interests
• Normal language and intellectual development

So if you know my son, he is extremely empathetic, concerned when others are upset or crying.  He will console them with a hug or pat on the arm.  He picks up on social cues and has no weird faces or postures.  He loves cars and animals but what 3 year old boy doesn't?  And normal language...nope.  Although he understands everything, he's just unable to move his mouth to make the sounds needed.  I guess in a few weeks, we'll meet with another team of people, a psychologist, an Asperger's specialist, a social worker, and another SLP.  I'm sure in the end they'll all think he's a wonderful, smart boy but they won't be able to tell what's wrong either.

On another note, today was the first time I've had the chance to sit in on his speech session with the school district's SLP.  It was amazing to watch her persistence with him as he can be a bit stubborn.  He actually said the word hot only it was more like huh......o........t.  But it's a step in the right direction.  They worked on color words and the corresponding signs.  He said purple.... p.....p.  He works so hard.  What was really interesting was watching her do oral exercises with him.  I asked her about it and she explained what she was doing with this one soft brush-like tool that she uses with him.  She moves it slowly around his mouth and then will stop.  He is suppose to move his tongue to that spot.  It's a natural reflex, like when you're at the dentist and they are moving the mirror around in your mouth, your tongue kind of naturally follows.  Only Nate's doesn't do that.  He has to really think about where to move his tongue so that it's touching the brush.  What he's basically working on is rewiring his brain so that eventually he can move his mouth to make the sounds and words he needs to in order to speak.  It's fascinating.  We talked about how the developmental pediatrician suggested an MRI but as with many apraxic kids, the scans will come back normal.

Much of the research into how we talk, how thoughts and speech are formed, is still taking place and it's a much more complicated process than we normally think.  Since it's so natural for most of us, why would most of us stop to think about it?

Here's some interesting research that just came out last fall:

In just 600 milliseconds, the human brain can think of a word, apply the rules of grammar to it and send it to the mouth to be spoken.   
Speed of Thought-to-Speech Article

Amazing.

The Journey (Part 3)

Back in December I had talked to several friends who highly recommended the speech center at the local university, where they train their SLP students.  Even the school district SLP was recommending this center.  After some investigation, there was more paperwork to be completed, and Nate was put on a list.  About a month later, I called to follow-up and he had been selected as one to be assessed.  Since this university is looking for a variety of speech issues, Nate was probably a good candidate.  In February he was assessed at their center.  Around this time I had met another mother (through Facebook) living nearby whose son was currently being seen at the university center and her support and encouragement was very helpful.  The assessment went well and at the conclusion of the review, he was recommended for immediate intervention....so what does immediate mean?  Immediately in the fall.  Since the semester was currently underway, Nate will have to wait until the fall semester begins in September.  There is the possibility there will be a small summer program, so I'm hoping we'll get a call for that.  Although none of this is free, it's at a reduced cost and nothing in comparison to what other hour-long one-on-one therapy might cost.  On the downside, they only see students for 3 semesters (approximately 1 1/2 years).  So although this is a wonderful option, I felt like it's a dead too.

So now what?  Since  no one wants to officially diagnosis the problem....or maybe it's more that no one knows what's going on...I decided to further pursue our health-care provider to see what additional services he might need or possibly qualify for.  I know it's better to intervene as soon as possible rather than wait and see.  So off to see a different developmental pediatrician, one who has done some work in neurology.

We saw this new developmental pediatrician yesterday and we walked away with no new information.  She initially suggested autism and I immediately told her that wasn't the case.  After her thorough questioning and examining, she agreed that he is a smart boy just can't talk.  No autism or autism spectrum disorder here.  One of the most asinine questions we get asked is this (and she did ask)-

      "He has older brothers, right?  Do they talk for him?"

What kind of question is that coming from a well trained physician?  What 3 year old goes through life without uttering a single word because their older siblings did all their talking for them?  Not even the most favorite word of any toddler?  The word "NO!"?  Come on.  Instead of saying no, Nate screams at the top of his lungs and shakes his head, because he can't say no.  I think I'm going to dedicate a post to lame questions we get asked or lame statements that are made.  How does one talk for someone?  I just don't get it.

As a result of this developmental pediatrician's evaluation, he will be formally seen by an occupational therapist (OT) and maybe sometime down the road undergo an MRI.  This is the only way they to determine if there truly are neurological issues.  But with full anesthesia I'm not willing to put Nate through that right now.  So OT and another SLP evaluation will be what we pursue for now.  It will be interesting to see what comes next.  Or what lame things I can add to my "asinine things" post.

I know what's most important is not the diagnosis so much as the treatment.  But sometimes I feel like without the formal diagnosis, Nate might not get the treatment that he needs. So this is all we have to go on for the time being... 

He presents with a significant delay in expressive language skills for his age.  He demonstrated with a significant speech/articulation disorder with characteristics of both Childhood Apraxia of Speech (CAS) and a Phonological Disorder.  Due to his young age and limited vocalizations it is difficult to pinpoint the disorder at this time.

The Journey So Far (Part 2)

So this past fall we saw a couple of different specialists.  One was a pediatric neurologist.  After doing what I think was a less than thorough exam of Nate, his conclusion was that there are late talkers and that he'd be fine.  The paperwork says speech and language disorder (at least it wasn't delay!).  No suggestions for treatment other than to see a developmental pediatrician.

I was pretty apprehensive about seeing the developmental pediatrician, as all the paperwork and information I had received from her office indicated that her specialty was working with ADHD or Autistic children.  I definitely knew that Nate was not Autistic but I figured it would be better to rule it out.  In the mean time, the OT and SLP at Nate's school continued to see him once or twice a week but I had become more frustrated with their lack of knowledge about CAS.  They were sure it was something else.  Mental retardation?  They never said it but it seemed to be what they were suggesting.  It can be so hard to be so sure about something and be told by professionals that you are not right.  I truly believed that it was just their lack of knowledge about this disorder more than my being wrong.  I had also begun reading the book The Late Talker, What to Do If Your Child Isn't Talking Yet by Dr. Marilyn Agin, which has continued to strengthen my thoughts about what is going on with Nate.

When we saw the Developmental Pediatrician, she appreciated that I had filled out the stack of paperwork.  Of course, all this was geared towards kids with ADHD or Autism but I filled it out anyway.  In thinking back on the evaluation, I should have insisted that she work with Nate first and ask us questions later because by the time she got into the room and finished questioning my husband and I, Nate was done.  He was definitely not going to cooperate.  Being that he's not a performer like some kids are, I was praying that he would show the doctor what he could and couldn't do.  She asked him to stick out his tongue, which took him a while but he did.  She asked him to move it side to side and he couldn't.  I had him attempt the word "bubbles" because it was one that he and his preschool's SLP had been working on and he made an attempt, kind of opening and closing his mouth more like a fish.  She thought it was good.  (Are you kidding me?  Good for a 2 1/2 year old??)  I should have had him try to say the word banana because he probably would have just smiled like he always does when he knows it's not something he can't do.  At the end of this appointment I ended up in tears because her response was, "at least he's learning".  I couldn't believe that yet another doctor with years of training and specialization would come up with such a vague answer.  Her report said to continue with present plan and return in 6 months for evaluation.  Another frustrating dead end.

Meanwhile at Nate's preschool he was continuing to thrive and his amazing teachers really become in tune with him.  They understood his mixture of signs, grunts, and expressive faces.  The intonation and vocalizations he makes are really amazing for someone who has no words.  I am thankful that he makes a lot of sounds and is determined to get his point across when need be.

During the months of December and January I started contacting our local school district (and university-more on that later) to get things rolling for an IEP since he would be turning 3 and the home therapy would be ending.  The Late Talker book has so much information and even a chapter on getting the help you need, including a walk-through of the IEP process and all sorts of tips and suggestions.  I also read all the information I could find on-line about the IEP process, both at the Federal and State levels and any other tips I could locate.  I had become a member of both the Childhood Apraxia of Speech, Apraxia-Kids, and CHERUB Facebook pages and read as many discussion boards as I could.  These resources have really helped so that I don't feel so alone in all of this.

In January Nate was tested by the school district's SLP and a Psychologist.  They spent a session at our home and another session was at their office.  I talked with Nate before his assessments, reminding him that he needed to try his best.  As I had mentioned before, he's never been much of the performing type and the more you try and push him to do something, the less he's likely to do it.  He's a very independent guy, which is a characteristic that is helping him cope well.  He did fine with all the assessments and we set the date for the initial IEP meeting.

Now I've never been on the parent end of an IEP meeting and being that I work in public education I was  leery about the process.  I know that school districts try to cut corners, so I was armed and as well read as I could possibly be.  Several other parents on the Facebook discussion boards were cheering me on, so even support from complete strangers helped.  We met as a team and I invited anyone that had worked with Nate to attend.  The team consisted of the school district's SLP and psychologist, my husband, my mother (who helps out tremendously), me, his preschool teacher and his preschool's SLP.  I wasn't sure about the preschool's SLP being there as I never really felt I had her support on the CAS diagnosis, so in a nice way, I asked if she wouldn't say anything.  But during the meeting she acknowledged to the group that I had such strong feelings about the problems with Nate being apraxia and that she had been wrong.  The more she had been reading and researching the more she had realized I was right.  I was blown away.  That really meant a lot to me that she would say that to the group of people that was there.

I was fairly happy with the IEP outcomes.  Just as I had though, Nate scored at least average in all areas except for expressive language.  (Duh!)  So they suggested 2 sessions a week for 30 minutes.  I asked about extending that to 3 times a week and they said I could call an IEP review meeting for that.  I figure I'll wait and see if I can get any additional support from our health-care or the local university's speech center.  I did have to ask for ESY (Extended Year Services) so that he would continue to have some therapy during the times the district was closed for the summer.  I let the team know that I wanted to take the IEP home and reread it before I signed any of it.  I am glad that I did.

It turned out that although we had all believed that the sessions would be 1-on-1 (which is what apraxics require), the IEP stated "group".  I was livid.  When I called the SLP about this, she explained that it was the way the form was set up and she had intended on 1-on-1 services.  I told her that since his IEP is a legal document and would follow him if we were to move, that it had to say 1-on-1.  She made the changes.  I keep waiting for the hard part!  It seems to all have gone too smoothly.  The school district's SLP has attended several classes and seminars on CAS and I know we are very fortunate to have her working with our son.  

I know that he needs more frequent intervention.  He started therapy with the school district about 3 weeks ago.  I haven't seen much of any progress made, but maybe it's too early to tell? 

...
(Part 3 to come....the local university and more specialist appointments!)

The Journey So Far...

So how did we get to this point? I had a fairly normal pregnancy, some blood pressure issues, but nothing too concerning, and a drug-free/intervention-free delivery. Nate weighed in at 9 pounds 13 ounces, probably one ice cream sundae short of 10 pounds! He was a happy and easy going baby, sleeping through the night at 3 months. It wasn't until he was about a 1 that I started to think something was a little different. He didn't seem to babble much and when he did it was really noticeable-probably because it was so rare. He was very active and even though he wasn't walking he "army" crawled everywhere. And he was quick! We all just figured that being he was the youngest of 3 boys, that things were maybe a little behind being that he was the baby of the family.

At 18 months he started preschool and at that time he still wasn't walking. He continued doing the army crawl or hands and feet when needed. He didn't seem to mind. At 19 months he decided it was time to walk. All the while he was being seen by a Speech-Language Pathologist (SLP) and an Occupational Therapist (OT) once or twice a week through his preschool. By the time he turned 2, we clearly knew something was definitely wrong in that all he could say was a sequence of vowel sounds, mostly short a (like in cat) or oo (like in moo). Not a single word, including dada or mama. He was communicating, just without words. It was worrisome but everyone tried to reassure us that he was just a late talker or that everyone was doing the talking for him. (These kinds of 'helpful' reassurances get tiring after a while).

We took him into his pediatrician who referred us to another SLP. She was young and had recently graduated. It was almost as if she didn't quite seem to know what to do with him and since he was only 2, stated that he possibly had a language delay (there's a big difference between "delay" and "disorder", but I didn't know that at the time).  Since it wasn't a medical issue, he could not been seen through our health-care provider. This was disappointing news but she recommended that we look into the local area's Regional Center who could direct us to resources that might help. At the time I was continuing my on-line research into what might be wrong. Googling anything that had to do with children understanding everything but not being able to speak.  I had never heard of Apraxia or Childhood Apraxia of Speech (CAS) but through many hours spent on-line this seemed to be a possibility. Many of the descriptors seemed to match.

The Regional Center sent a nurse and clinician to do some assessing on Nate late in the spring. They agreed that he was a delightful boy and that in most areas he scored average, except in expressive language. The only thing he qualified for was an in-home play therapist. As I continued reading and researching, I felt more and more strongly that CAS was the disorder that Nate had. He enjoyed working with the therapist who came to our house and we all worked hard on increasing our knowledge of sign language (ASL). I printed out photos and reminders of the signs and posted them around the house. Being that none of us are hard of hearing or have much experience with ASL, we had to work on it. Now he knows between 40-50 signs and has many of his own gestures or sounds. It has definitely helped to decrease his frustration in being able to communicate his needs.

....

Journey

I woke up this morning thinking about my 3-year old and his ongoing journey with apraxia (childhood apraxia of speech). As we continue on this unknown path, we don't know where we're headed. As an organizer and planner, this is so hard for me. Every day we are learning something new about his disorder and about him. We have many questions. What additional therapy might he need? Are we doing enough? What will life be like in 1 year or 5 years?

If you're not familiar with CAS, it's a motor speech disorder. Children with it have problem saying sounds and ultimately words. It's not because their muscles are weak, but somehow the brain has a problem getting the thoughts to come out. Like the lips, tongue, and jaw can't move in the proper sequence or sometimes not even at all. It's as if every word or utterance takes a tremendous amount of thought. Speaking is extremely difficult. At 3 years old, our son has never said mom, cannot say his name or share any of his thoughts. He has found ways to communicate through American Sign Language or his own gestures and sounds and through this we are discovering just how amazing he is.

I've reached out through the on-line forums and found some connections but there are times where I feel alone and want to talk about what we are going through. I decided today would be the day that I start a blog as a way to share the things we are doing, how we are feeling, and connect with others who are going through some of the same things.


So here's to a journey with an amazing little boy.


“One of the hardest things in life is having words in your heart that you can't utter.”

-James Earl Jones