What's Really Going On

Several months ago, BoyTwo was officially diagnosed with FAS.  Although I already knew that this was most likely what he was dealing with, I felt like I had been slapped in the face when I was told.  I was surprised at how sad I felt for him.  I know that he will continue to progress, at his own rate, I know that people with FAS can be successful, I know all of that.  I'm also aware of a lot of the statistics associated with FAS and those remain my concerns.  I'm scared for him.  It's tricky, you see.  BoyTwo is likely going to need assistance forever.  This may be in the form of someone helping him budget, grocery shopping with or for him, someone living with him.  He's going to need somebody to be his exterior brain.  This person will largely be responsible for helping him with his executive functioning (or lack there of).  He will need to be able to trust someone enough to rely on them.  Which gives us our next hurdle: teaching someone with attachment difficulties to trust.  The irony of it all.  It's just one giant circle of FAS causing other difficulties in his life. 

I was mad at his bio mom for a minute.  And then I just felt sad for her, too.  

This school year is going well for him.  He is in special ed/resource/whatever the current politically correct terminology for that class is at the moment for half of his day.  During the other half, he has pull outs for reading and his own personal aide comes in with him to do his work.  His behavior has come a long way.  His teacher has been great to work with and works so well with him.  I did my usual 'BoyTwo Training' for all those who would be working with him at the beginning of the year and that seems to have really helped.  

It's hard to watch the already large gap between him and his peers continue to widen.  I see little spurts of growth from time to time where something will click and that gives us all hope:)  My heart hurts for him because his peers are also getting old enough to see how different he is and while they are still very kind to him and extremely tolerant of his behaviors, this year there is a much different feeling between them all.  He doesn't really notice that he doesn't have any friends or that he is so different than others and I guess I'm grateful for that.  He does have one little friend.  Our neighbor who is four years his junior.  

I continue to spend much of my time at the school.  I started an art program and that has been really fun for me to do.  I  do a lesson for half the school one week and the other half of the school gets it the next week. We are learning about master artists, composers and authors.  I love introducing the students to these fascinating people, many of whom struggled with identity, learning disabilities and misfortune of their own.  I love the life lesson it provides to persevere, have faith in one's self, and to not be afraid to try.  I also come up with an art project to go along with each lesson and that has been... a huge learning curve.  I'm not at all artistic and as a child I hated art during school.  It caused me enormous stress to not be able to perfectly recreate the assigned project and to not be able to make my hands produce what my mind was envisioning.  One of my first lessons this year was about Picasso who has said that you cannot create a masterpiece without first making a mistake (or something along those lines.  I don't want to look up the actual quote).  I encourage the kids to not erase, but to make each seeming mistake into a work of art, to add interest to the piece and beauty and originality.  See how it's so much like real life?  

This semester I have homeschooled One part-time.  She comes home every day after lunch.  I have loved this time with her while she still likes me and thinks I know something:)  I love that we can personalize her curriculum and have one on one time together that we otherwise would not have.

Four has taken to reading like a whiz and this mama is so so so grateful.  After having four of my other kids with reading/learning disabilities, it is a blessing to see her take joy in reading and learning and to not struggle with it.  I love when she comes to me with a book in her hand and asks me to listen to her read.  It is the highlight of my day!

BoyOne is a sophomore in high school this year.  In our state this means it is also his first year at high school.  (Don't ask, I have no idea.  I didn't grow up here and I think it is so weird.  You're a freshman in high school but you don't actually go to high school.  Makes a ton of sense.)  Without getting to personal, it's not really working out for him for a lot of reasons.  As his parents, we are needing to adjust what our goals for his education are.  What was once a priority is not a realistic option without sacrificing an actual education.  We are in the process of making decisions that will be agreeable to both him and us.  I feel the added pressure of lack of time with him.  He turned 16 in September.  Shortly after his birthday he approached me and asked me where I thought he would be if he was still in Ukraine.  Then he told me about how different his life would have been had he remained.  It was good for me to hear because I've been feeling like the progress here has not been quite what I had hoped for and that perhaps we had failed him.    

Two and Three are doing well.  School is a challenge for them both and that weighs heavily on my mind constantly.  They work so hard at everything they do.  As I often tell them, they will be blessed by learning to work hard.

I am so grateful that I am their mother and that I get to be the one to journey through this life with them.  I'm immensely grateful that I have the opportunity to be a stay at home mom ( although whoever thought to call it that was smoking crack because what stay at home mom is actually ever home?!).  This gives me the opportunity to be ever present and available to them when they need help.  One of my biggest concerns this past year or so has been the lack of time I have with my kids before they leave my home.  I have tried to spend more time talking with them about eternal things, incorporating more heaven into our house than ever before.  I'm not magically more patient, we aren't magically getting along at all times and my kids haven't magically turned into scriptorians, but at the end of the day there is a feeling of love and peace that abides in our home.  Right now that is my number one goal.

More CAPD

Two was diagnosed with CAPD today by an audiologist.

Back in October when Three was diagnosed, as the doctor educated me about CAPD, I kept thinking to myself, 'This sounds so much like Two!!!'  Based on that thought, I scheduled an appointment with an audiologist at our Children's Hospital in the NeuroSciences department.  I did not do the full neuropsychologist route because, frankly, we do not have a money tree.  Because I really strongly felt that this was a struggle of Two's, I knew that I could have an audiologist test for this specific disorder.  I did get a little nervous, as it was still a significant expense, thinking 'What if I'm imagining things?!', or 'What if it's not CAPD but something else and I miss it by only testing this one thing?!', etc.

The appointment went well and I really liked this doctor.  She is an audiologist and an SLP (speech language pathologist).  She told me that Two had perfect hearing, they always test this first.  Next, she did a 'preliminary' test to find out if a more in depth CAPD test was necessary.  Two failed the preliminary test, so the doctor proceeded to test for CAPD.  She concluded that Two has CAPD.  Two did really well during the long testing.

Interestingly, the doctor recommended that I get Two a neuropsychologist evaluation because she suspects that there are some difficulties with her working memory.  She asked if she had ever had a traumatic brain injury or concussion.  When I replied that she had, she strongly encouraged me to seek a neuropsych eval and even said that perhaps our insurance would cover part of the evaluation because of medical necessity (the concussion).  She explained that a person can suffer a head injury but not see the affects of it until years later because the part of the brain that becomes injured may not be used or developed until later on in life and therefore does not become evident until later on.  While she cannot diagnose this, she 'strongly suspected' it.  She offered me several resources and helped me to feel good about the direction we are headed in.

I am grateful to know how I can better help my children.  I am so grateful that they have good health.  I am grateful that the Lord opened this door for me to be able to know how to help them and to better understand their struggles.  I'm grateful for our elementary principal who rode the bus home with BoyTwo to help him behave, get off at the right stop, and be sure that BoyOne was there to walk him home (he's never ridden the bus home before because I'm scared that he could cause a huge problem.  He has a hard time in our car, for Pete's sake) because I couldn't be there to pick him up from school as I do every day.  (I know.  We are so blessed!  What a stark contrast from our initial experience here...)  I am sad as I recall different times over their little lives where I may have misunderstood them and not been as compassionate as I should have been, as understanding, or when I may have disciplined them when I shouldn't have (think 'Two/Three I told you four times to _____' when each time she likely heard a different thing that sounded like gibberish each time, and then was given a consequence.).  Sad.

It's all good and we're moving forward.

Guess Why...

...BoyTwo was sent to the principal's office for the second time today?

He was chasing a girl with a pair of scissors trying to cut off her hair.  

Yeah, so maybe no meds should mean no school.

Yikes!

aaaaaand just for fun, Four thinks/swears-up-and-down/knows-without-a-shadow-of-a-doubt that the lyrics to "Old McDonald" are:

Old McDonald had a BARN.  

We cannot.  convince. her. otherwise.  She is right and the rest of the world is WRONG!!  Watch out future husband of hers:)

aaaaaaand, for an update, 'slow talking' has been going really well for the girls.  It is, however, REALLY hard for me!!  :)

Number of Days

422 - number of days the boys have been home

420 - number of days before BoyTwo told us he loved us

2,579 - number of days before I found out that Three couldn't understand what we were saying to her

2592 - number of days before I realized/understood that Three couldn't/can't understand what we are saying to her

3,309 - number of days before I realized that Two possibly has CAPD, too  (she's 9 so that's why this # is so much larger than Three's.  It was actually only 3 days after Three was diagnosed)

********

Every morning when the kids wake up, we tell them good morning and that we love them.  Then before they leave for school, we tell them again.  When I drop them off at school, as they jump out of the car, we say 'I love you!' again.  During their day at school, I usually see one or more of them (because let's face it, with five kids at the elementary, I still practically live there:)), as we part I say it again.  We say it after we pray together.  After we brush their teeth and send them upstairs to await being tucked in, we say it again.  On the final tuck in (is there really such a thing??) we express our love to them.  If they get off their beds they are sent back (or escorted back) with an 'I love you!'.  Sometimes these 'I love you's are accompanied by us telling them something specific that we love about them, or listing several reasons why we love them.  Five of the six kids always answer back, 

'I love you, too!!'  Two days ago, after brushing BoyTwo's teeth, I sent him up to his bed to wait for a tuck in.  'K, BoyTwo, I'll be up in a few minutes to tuck you in.  I love you!'  And holycrap, 420 days and approximately 2,100 times later, the kid answered back,

'I love you, too!'

Huz and I were brushing different kids at separate sinks in the bathroom and both of us stopped, looked up and did the whole, 'did he just say what I think he said?', 'did you just hear that?'.  

Now, lest you think that hell froze over, this week, particularly the past few days, have been quite... rough.  That's a pretty nice way of putting it.  After really classic bad behavior, and a series of 'loving consequences', I tucked BoyTwo into bed tonight.  As I scooted the covers away from his face (he often buries his face and then I have to 'find' him, you know the game you play with your two year old) to 'look' for him, I noticed the sober look on his face.  Then, what to my wondering eyes should appear but a tear, out the corner of his eye.

Now, BoyTwo definitely cries, but his cries are usually raging cries, hateful cries where you can see in his face that he is wanting to rip the skin off your face and eat it.  This cry was different.  He was tender.

And then it hit me.  He had opened up to us on a whole new level (saying 'I love you') and was now testing us (bad behavior past few days) and was feeling sadness that I had been disappointed with the things that he had done!

Just to underscore the magnitude of this verbal expression of feelings, BoyTwo denies up and down that he loves his brother (whom we know without a shadow of a doubt he does in fact love) and according to the both of them, has never expressed this feeling to anyone.  In fact, one time I had tried to get him to verbalize his feelings for his brother, hoping that it would help him to recognize and put a name to that feeling that he had toward his brother.  He would. not. say. the. word. love.  He actually started to hyperventilate when I suggested that he loved BoyOne.  But, now this!

Hallelujah!!  The child can feel!!!  

*******

Still trying to sort through the whole CAPD thing.  As I read about CAPD (over and over and over into the wee hours of the morning) I see indicators or 'red flags' that may indicate that your child (or you) may have CAPD.  Every time I see that list, I don't see Three, I see Two.  Over and over.  Oh, how I hope I'm wrong.  Two has SPD and is actually the reason I first heard about CAPD years ago.  I thought she, possibly, could have this.  However, the 'red flags' for CAPD didn't encompass the sensory 'issues' she has.  And there's a lot of them.  So, when she was diagnosed with SPD, I basically forgot all about CAPD.  Until now.  Until I realized that I have been mentioning to Huz and her teacher how I'm concerned that she is not comprehending well.  Until I realized how many times a day she says 'huh?' and 'what?'.  Until I remembered the blank stares, her very delayed language progress, her serious difficulties with reading, rhyming, spelling, word confusion and substitution, etc.  

One thing that I was told that would help Three was to speak slower.  It would allow her more time to process what she was hearing.  I really thought that didn't apply to me.  As her mother, I have never once heard her indicate that she could not understand what I was saying.  She's never mentioned that she couldn't understand me.  Because of the SPD, a lot of the parenting things we do in our house are similar to those things you do for CAPD and ELL kids.  I have been thinking for a few days that I ought to try slowing down my speech.  Part of me wasn't going to try it because I really felt that as a mother, I would have known/noticed that this was something I needed to do.  I hadn't noticed a need.  Didn't think I needed to try.

Tonight, as I began read to Three and Four (BoyTwo is usually with us but was already in bed-see above section), I humbled myself and decided to try speaking quite slowly.  To be very honest, I felt like I was reading at a ridiculously slow pace.  We read half of what we usually did in the same amount of time.  When I finished, I turned to Three and asked if she liked the new way I was reading or if she wanted me to keep reading how I usually do.

"The new way."

Bad mommy.  I closed my eyes and then said, 

"I'm sorry I usually talk so fast!  I didn't realize you didn't understand me."

She said, "It's okay mom."

I love their immediate forgiveness and love.  She continued, 

"That's why I don't answer questions when we read scriptures (we read scripture together every morning.  Well, One or I read, the others listen as they can't read).  I can't understand you or Savanna."

Oh my holy crap.  Bad bad mommy!  (I'm not looking for anyone to reassure me that I'm not a bad mommy, it's just the immediate thought I had when this happened.  It's a natural feeling, I think, to realize you have unintentionally failed your child)  This poor child.  Then the whole movie thing happens where you flashback to twenty different scenes and replay them in your head in a matter of a millisecond.  I thought of all the 'labels' she had been given.  Shy.  Quiet.  Withdrawn.  Not attentive.  Difficulty keeping up with classwork.  Well, duh.  She seemed shy, quiet and withdrawn because she couldn't tell what was going on.  I remember being in Ukraine, hanging out with a bunch of Russian speaking adults.  I could have easily been tagged as all of those things.  Not attentive.  Difficulty keeping up with classwork.  Well, yeah.  When you can't tell what anyone is saying, you can't exactly follow along.  

Hugs.  Kisses.  Again.  Tuck in.  More 'I love yous'.  Go downstairs to read with Two who is waiting patiently on my bed with her book.  We have this great system.  She reads, I read.  This helps her a ton as she tires when she reads.  She has a hard time comprehending.  She, through much effort on her part and mine, has become a good reader.  In fact she tested really well, being able to read at a 6th grade level.  Comprehension?  Nope.  Below her current grade level (3rd grade).  She has learned to compensate.  She taught herself to read well and quickly.  People just have no idea that she doesn't know what in the world is being said.  (except her teachers and myself who notice this.  it's kept her safe from feeling alienated from classmates)

When it was my turn to read, I read my section slooooowly, as I had done with Three.  When I was done, I asked Two if she liked the new way I was reading or if it was too slow and did she want me to read my usual way.  She, too, liked the slower reading.  I told her that I know I read fast and that I was sorry that I hadn't asked her before.  She told me it was okay and that she thought it was better to have me read slow because then she could understand what was going on (in the book) and maybe we could all talk slower, too, so she could understand.

For reals?!  For reals.  I had no. idea.  

I'm sure you've heard of 'Fast Talker' and 'Soft Talker' and 'Loud Talker'.  Let me introduce myself to you,  

"Hello, I am now s.l.o.w.  t.a.l.k.e.r."

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:)