OT

Nate working on reading numbers during OT.  He is walking around the room reading numbers 0-30 out of order while another OT student is on a swing working on coordination.  I love how his OT is incorporating physical activity into his academic work.

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!

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.

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.