CAPD

***warning.  loooooooooooong***

Monday Three was formally diagnosed with Central Auditory Processing Disorder, aka CAPD, a learning disability called Specific Language Impairment (SLI), along with a possibility of dyslexia.

CAPD is a group of problems that can occur individually or in combinations with one or more aspects of the central auditory process.  It is estimated that approximately 2-3% of the population has this disorder with boys outnumbering girls by 2:1.  People with CAPD do not have hearing loss.  There are ten processes that take place in processing sound once it is detected (heard).  Three has difficulties in seven of these areas.

SLI kids have difficulties with oral language outside the typical range and can be diagnosed by an SLP (speech language pathologist).  A variety of components of oral language may be affected (grammatical and syntactic development e.g., correct verb tense, word order and sentence structure, semantic development e.g. vocab knowledge, and phonological development.  Three is affected in all of these areas.  SLI kids may also have receptive or expressive difficulties.  Three has difficulties in both areas.  

If you're a little confused and overwhelmed by that information, join the club.  Prior to Monday, I had heard of CAPD back when Two was diagnosed with SPD (Sensory Processing Disorder).  I knew a precious little about it, but enough to know some of the 'red flags' for it, yet somehow had totally missed them.  Needless to say, I have had several sleepless nights as I have read and tried to comprehend pages of information provided by the doctor, scoured the internet and searched out other articles. 

Now that it's been almost a week, I feel more informed about CAPD, more stressed about finding therapy for it and far more aware of Three than I was before.

Interestingly, CAPD is a sensory related disorder as all of the steps for auditory processing happen on the sensory input side of things.  Two has a sensory disorder.  Hmm.  Is this hereditary??  These sensory related problems?  I don't know the answer to that yet.  There are certain aspects of sensory related problems that can be hereditary, but as far as sensory problems being hereditary?  Not sure.  

Let me relay the above information to you in a way that may make more sense.  At least in a way that makes more sense to me:

Last school year, when Three was tested for special ed due to extreme reading difficulties, she was denied services due to doing remarkably well on the tests.  However, at that time, it was discovered that she had a 'language impairment' and qualified for speech therapy.  It is important to note that this therapy is NOT for pronunciation/articulation of words as I once thought all speech therapy was for.  She was receiving therapy for expressive and receptive language skills.  Remember those words from the third paragraph above?  At the time of the IEP meeting, I did not realize that they were diagnosing her with something.  I was busy trying to figure out how she had done so well on her testing and why they were not going to help her when she could. not. read.  I simply thought that they recognized she had a little problem with both receptive and expressive language and that they were able to approve her for therapy for that.  Basically, I knew that she had a problem with this, but I didn't realize it was a learning disability or the extent to which she was affected by it.  Even after seeing their test scores.  I still was thinking that the school speech pathologist was just being really nice.  This was not a primary concern of mine.  Now it is.  It has been spelled out for me in a much more concise form.  I have learned a whole lot more about it.  Evidently it's a much bigger deal than I realized and while the speech pathologist is nice, she wasn't just being nice.

CAPD.  Let me relate this to something you may be more familiar with:  A person can have 20/20 vision and still be color blind.  Their eyes see just fine, their brain does not, for some reason, process color.  Three can hear just fine.  Her brain, for some reason, does not process sound the same way ours does.  What is this like??  Two examples.  

1) Have you ever been on a phone call with someone who is on their cell phone and they have terrible reception?  Or maybe you are the one on your cell and it has bad reception.  You are only hearing about every three words and the words you do hear, you are only hearing parts of?  I'm very familiar with this phenomenon.  We have TERRIBLE reception up here in the mountains where we live.  During the whole conversation you are trying SO HARD to figure out what the person is saying and trying to decode those words that you only heard a part of.  If your kids are being loud, you tell them to shush.  If you have the radio on, you turn it off in an effort to eliminate other noise so that you can better focus on the phone call you are straining to hear.  If you are driving and it's a call that you must stay with, you may even pull over because it is taking too much of your attention to continue driving and conversing.  That's pretty much how it is for Three.  When I heard this I was pretty skeptical, but I have the audiology reports to prove it.  Hard to be skeptical with that sort of information in your face.

2) I am SO grateful that I attempted to learn some Russian prior to my trip to Ukraine.  For far more reasons now than I was aware of then.  This is a HUGE blessing in my being able to somewhat understand what Three is going through.  This next example has to do with that.  When I went to Ukraine, I had learned the cyrillic alphabet.  This proved to be enormously helpful as I was able to read everything.  Even though I often read slowly, I could read it.  Because I had started to learn the Russian language, there were a few words I even understood.  When I read our court documents (the ones in cyrillic), I could read it all.  I could not understand but maybe half of it.  And just because I could read it all did NOT mean that I could pronounce it all correctly.  Also, when engaging in conversations with natives, I relied heavily on body language, facial expressions and the few basic words I was familiar with so that I could catch the jist of the conversation.  It was enormously helpful for people to speak to me more slowly than they typically would as it took extra time for me to process what they were saying.  When people speak quickly it often sounds as though they are saying one big, huge, long word (if you doubt me, let me tell you about BoyTwo who would. not. quit. singing 'eyelockamoomamooma' over and over and over.  What was he singing??  'I like to move it, move it,' from Madagasca.r.  He STILL thinks it's hilarious that he thought it was one big word.).  When I was in Ukraine I had to really concentrate and focus and decode (break down) the conversation in my head as the person spoke.  Often my response was slightly delayed (maybe only a second or two, but not usually instantaneous).  Not only were they speaking a foreign language with conjugations and masculine and feminine words that would change the ending on words in the entire sentence, they have sounds in their language that do not exist in ours.  They also have sound combinations that are not familiar to us.  This is what English is like for Three.  The same thing may sound different to her every time she hears it.

As for not diagnosing dyslexia at this time?  Although Three presents as though she is dyslexic, studies indicate that as many as 50-75% of people with SLI have problems reading and the statistics indicate similar numbers with CAPD.  Out of the seven people I have found (only one is in real life.  Four were mentioned as part of an article and the other two were blogs that pulled up that are not current) that have CAPD, three are also diagnosed dyslexics and the other three have significant reading struggles.  The last one is the real life person.  I actually only know her aunt and she wasn't sure about the reading thing.  It is possible that Three's reading difficulties are simply (haha as if any of this is simple) due to her SLI or CAPD.  

It is overwhelming to me, as I research therapies to improve Three's ability to process sound, that there are not very many options and that the options available all have conflicting reports of progress.  Where one person has significant improvements with one therapy, another has few.  Unfortunately all of these therapies are quite expensive (of course, not necessarily because they are trying to take advantage of you but because they are so intense.  Each one recommended to me by the doctor involves a minimum of 3 days a week, with 5 days a week being the recommendation, for at least one hour each session).   These therapies also take time to see results as we are literally trying to teach her brain something that it never learned, not to mention the fact that she is about two full years behind in her language development.  So it's not feasible that I 'try' something out for a few months without taking a loss either monetarily or time-wise if something doesn't work out.

How did I miss this??  How do you not notice that your kid cannot process language??  I don't know.   I did beat myself up over this briefly, and still do a few times a day, but in the end have decided it's not worth it.  I don't have time to feel bad about not figuring this out.  Also, I can think the same question two different ways:  why me?  1) was it something I did wrong when I was pregnant? etc, or 2) why did the Lord choose to bless me with this particular child who has this particular struggle?  He must have something up his sleeve.  I need to figure out how we are to use this to bless us and others.  

But really, I'm sure some of you are sincerely wondering how in the world I missed this and for you, I do have a few logical explanations.  Because she has poor language skills, Three cannot adequately express herself to me.  Because her sister right above her in age also has language difficulties that are/were more prevalent, Three's language difficulties didn't seem so bad.  It's hard to know that something is wrong when it seems to be so much better than the same thing in someone else.  Does that make sense??  There have been times before (but really only a few over the course of three + years of schooling) when she has told me, 'I didn't finish my worksheet because I couldn't hear how to do it.  It was too loud to hear my teacher.'  People, she's in second grade.  As this is not something she complains about frequently or even often, I thought it was a volume or sound issue.  I merely thought the kids in the class were just being kind of loud that day and that she literally couldn't hear the teacher very well over the noise.  Also, because this is how it has ALWAYS been for her, she doesn't know anything different and therefore does not complain about it hardly at all.  Every day she struggles with this.  (It's just like when I quit eating dairy and realized how sick I had been feeling every single day.  I didn't ever know until it had been taken care of.  I knew that I didn't feel great, but I had no idea I was feeling so badly because it was how I had always felt for my entire life.)  At home??  Well, I have one special needs child already, Two.  The way I interact with her carries over into how I interact with all of my other children.  Many of the ways I interact with her and the way we do things at our house already are 'recommended interventions' in how I ought to interact with Three.  Because I was always doing these things with her, I didn't notice anything odd.  There wasn't a time when I was NOT doing these things to notice something was awry.  Add to that, recently, two children that do not speak the same language as we do and we do a lot of pictures and body language and use few words (hard to believe, I know) when giving directives.  

Anyhow, enough words from someone who routinely uses limited spoken words at home:)