Saturday, June 16, 2012

Auditory Processing Disorder

A while back during speech therapy for Eli, his therapist (an SLP) informed me she believed Eli should be tested for Auditory Processing Disorder (APD).  We had talked about this before, but she is not the type to just jump into these type of suggestions unless she is sure.  So we waited for quite a while.  The week prior to her making the suggestion she had gone to some updated training on the very subject.  While there her mind kept going back to Eli.  He displays all the symptoms.  Plus apparently kids who have injuries to their brain where they lack oxygen are at risk for this.  It can mimic ADHD, but is NOT the same.  The problem with getting tested is there really are not a lot of qualified people to conduct the testing (at least not local).  1) Only a qualified audiologist can perform the test.  2) They must be a certain age to test for it.  (Eli's not old enough yet since one place is 7 and another place is 8 and he will only be 6 in a month.)  3) There are only certain places technically qualified to test for it.  Surprisingly, the one place people would think is qualified, it was recommended NOT to go there by both the school district and his SLP.  4) The test cost over $1,000 just for the test and they do NOT bill the insurance.  I don't really want to go through that.  5) We wouldn't be able to do the therapies through them because they are too far away, plus again they do NOT bill the insurance.

Personally I don't need a diagnosis just to have a diagnosis.  I don't believe getting an "official diagnosis" will change our lives.  He will still be in speech.  He will still be on an IEP.  And this is NOT something that will require surgery like the subclavian steal syndrome.  One of the great things about his teachers is that they completely agree that he has this.  I actually asked the SLP and his teachers at school about one of the things that is suggested for kids with APD.  It's basically an amplification system (is that the technical name?) that the teacher basically speaks into one piece which goes into an earpiece the student wears.  You can have one student, multiple students at the same time, or an entire classroom set up.  And he can have this if we think he needs it.  His teachers (including his SLP at school) also mentioned that at some point we will need to focus on strategies to help Eli cope once he is not able to improve.  They aren't giving up, but it may be a possiblity down the road.  (Can I just tell you how AWESOME Eli's IEP team the last two years has been.  I'm seriously going to miss them.)  So really getting a diagnosis is not really necessary. 

After doing some researching on the subject of APD, I discovered that some people who have APD use a combination of ASL and verbal speaking to communicate.  Because people with APD struggle with verbal memory, the visual "stimulation" that ASL provides helps them remember what is said.  I started to try it with Eli.  And it works.  They actually use it in school with him as well.  So I can obviously see it's not in my head.  Luckily for me a very dear friend wants to eventually help families like me who really need to learn ASL.  She has been in school learning ASL for a while.  It also helps that her daughter is hearing impaired.  I am ever so grateful to my friend for helping me learn.  And am actually thankful I get to be her "guinea pig" as she goes on her path to realize her goal.

Saturday, June 9, 2012

Emotions and Talents

I'm an emotional person.  Anyone that knows me can testify I cry over anything and everything.  I can't help it.  I have ALWAYS been like that.  If I'm happy, I cry.  If I'm sad, I cry.  If I'm frustrated, I cry.  If I'm mad, I cry.  If I'm......... I think you get the point.  But it's not just the crying.  It's the extreme emotion.  If something happens to someone I feel bad deep in my soul longing to comfort or help in some way.  When families are in crisis I so badly want to help.  When I see children with special needs I want to help give them what they need.  I want to be there for the parents.  My emotions have always bothered me.  It's can be really embarrassing.  And frustrating.   Over time I have come to accept this about myself.  It's not something I really liked, but really just came to accept that it wasn't going to change.  Until recently, I looked at these emotions as a burden.  I now know differently.  I have come to realize this is the talent that God gave me.

Ever since I've given my life to Christ, I have always wondered what my talent was.  I looked around and watched people singing in the choir and longed to do that, but never really felt like that was my special gift.  Or see the main person leading VBS and wish I could be that outgoing or outspoken.  But I've never really felt called to anything.  However, last week I went to an event with a friend.  Well the event itself was actually canceled, but we didn't know that until we went inside.  As I waited for her to find out what was going on I picked up a free brochure that is suppose to help you figure out what your gifts and talents are.  So I grabbed one.  I took the test a few days ago and wouldn't you know it.  The very thing I thought was a burden was the exact thing I'm suppose to be using for Christ.

I have absolutely NO idea what I'm suppose to do with this now.  But it does feel good knowing the purpose for why God made my emotions so strong.

Thursday, June 7, 2012

Just An Example

So I have been trying to post some videos for a while.  Unfortunately I can only get one to post.  Also, please excuse my less than awesome video skills.  It's proof I will never be competition for anyone professional. 

Anyway, this is what happens to Eli when he plays.  Some might attempt to say these are migraines.  I assure you they are not.  Migraines would NOT happen only when he plays.  He would just get them randomly.  Also if you watch he will point to the back of his neck.  This is where the bloodflow is messed up and skips going to his brain.  This is our life.  This is what most people don't see.  And believe me if I could get one with him actually passing out I would.  Unfortunately it's so quick there is no way for me to get one unless I follow him around 24/7.  I am thankful we get a break from these when he can't go outside and play.

I also wanted to thank my wonderful son, Christian, for helping me upload this.  Can I tell you how much trouble I am in when he moves out?  Since videos are an EXTREMELY rare event on here, I can pretty much guarantee they will NEVER happen.


I have been meaning to post for a while. I'm not sure why I haven't. I guess because I have so many swirling thoughts on what I want to post, that I have a hard time sitting down and sticking to one at a time so I'll post the one that has hit me the most.

Sweet Peace!

Ever since the neurologist gave us answers as to why Eli is passing out, getting severe headaches, dizzyness, arm pain, stroke like symptoms, etc. I cannot even explain the peace in my heart. The problem is not fixed. It didn't just go away. But knowing what it is has helped us to say "slow down" so that we can limit the pain. I get very brief moments where I get scared of what is going to come next, but they are just that. Brief. I'm able to give them back to God because I am grateful he revealed the answer to us. And that gives me sweet peace.

I don't feel the overwhelming urge to google for answers. I don't feel the anxiousness everyday waiting to see if he's going to have an episode. I honestly feel like I can enjoy being with my kids again.

Sweet Peace!