My trifecta child

Throughout the year there have been minor issues that I have managed to alleviate through swapping of parts with the spares Cochlear provides upon our activation a whopping 5 + years ago. 

Two grand old carry on sized boxes were provided and we knew nothing about the contents.  Completely overwhelmed,  I figured we’d figure it all out at some point throughout our lifetime journey.

Fast  forward to now,  and LJ has been having on again,  off again issues from,  the right hurts, it’s too loud,  my head hurts,  etc.  You name it,  it has happened this summer going into the fall school year so much so,  that we have ceased to wear the right entirely for a week.   And just in time,  we had our scheduled audiology appointment scheduled with Cochlear Audiologist to help us with our issues.   I ensured we had all paperwork in place,  referrals and approvals galore.  

First, I mistakenly thought the appointment was at 11 when it was at 10:30. Totally.,  my mistake and I chalk it up to the stress of the school district.  Solely,  still fault.  Calendar flop. Oh,  well.  Let’s fast forward to this 4 hour appointment.  Yes,  four. We all made the mistake of not testing him at the booth prior to our adult conversations of electrodes,  troubleshooting,  swapping of parts,  interview to understand the sequence of events that have led to this appointment…. All the while an entire 3 hours came and gone.  I was wondering why LJ began to act up to the point where he began to throw puzzle pieces and the individual who’s sole job at that time was to keep him occupied.  Poor lady.  She was an intern to become what I would presume, a pediatric audiologist and she had the awesome task to entertain my child who doesn’t like women all that much.

The problems: intermittent signals on the left,  no response on the right.  Lights flashing but no sound.  His continuous complaints for months of pain –  yet not being able to determine if it is pain of volume or pain from physical issues or internal device. Then both implants shutting off unexpectedly. Swapping two coils  and having none to spare.  All of which are completely out of warranty.  So imagine the stress I had!

Her pale face had red marks from the wooden puzzle pieces that were pegged at her face.  He was clearly over the appointment. He was laughing in hysterics because he knew that she was getting pissed and you can see the look on her face.  My child can be intuitive and could see that she’d reached her limit and I just decided to take over all the while attempting to have a serious game plan discussion on what we collectively would do after this appointment.  They were actually all amazed at how compliant he was with me,  but how he didn’t care much for the poor lady.  And this is how much I know much child.  In a simple ten minute observance,  the audiologist from Cochlear said, ” you are seriously in sync and in tune to what triggers him and what he can potentially do,  that you prevent it before it even happens.  That’s so impressive.”  and while she said that I caught him mid throw about to peg the said lady with a giant wooden puzzle piece. 

They did us the courtesy of checking all our parts. Readjusted some maps, flagged concerns and provided a game plan on what we all had to do in the course of the next few weeks. 

I wish it were an easy fix but we all agreed to rule out medical issues of the internal device and if (BIG  IF) the ENT specialist believes there is an issue we may have to,  in the last and worst case scenario,  deplant and reimplant.  I felt myself well up with all the same emotions P re surgery, 5+ years ago and I had to compose myself because we haven’t even gotten there.  I pray to all that I have,  it isn’t the case but am seriously grateful that we had 4 bodies that came out with a game plan on how we can move forward.  She’s hoping that the upgrade,  sorry, new devices of the N6 that I applied for 2 months ago will be improved so that we can see if it will alleviate any hardware issues.   A lot of theories were thrown around: electrodes malfunction,  hardware issues,  mapping glitches or corruptions,  internal device movement or displacement,  mapping interference, a whole lot of tech I can terms that I felt like an audiologist completely understanding what was being said,  terminology and all.  Why and how!? Because I have secretly been obsessing about the possibilities and I felt I needed to be prepared.  I hate being overwhelmed with terminology that I don’t know,  walking into an appointment with my clueless face and having them educate me when I feel it is my duty to know. I know I put pressure on myself a but much. But because I did my secret obsessing,  I was able to have a fluid conversation with audiologists like I was a colleague.  I still asked questions though. Had to.

I pray it isn’t the surgery route.  Pray with me why don’t you.   If it is,  I’m comforted in knowing that we have the resources to do this.  Some don’t.  The upside is that he will also upgrade his internal device and I would like to think that those parts have improved in the last 5+ years.  That’s comforting as well. 

I pray that he does get approved for the new devices. Lots of new and exciting options that I’m sure will benefit his hearing quality as well as accessibility for me as a parent.  Pretty exciting.   While half the world is busy lining up for the new Apple iPhone,  I’m here hyped up about my son’s hearing device. 

Today was exhausting to say the least.  I tried to give him a treat with riding a steam train after the appointment.   He halfway enjoyed it but I knew he had reached his limits when the littlest things that don’t usually trigger a meltdown, went into high gear.  The sound of the train,  the scream of a child,  the look of a Passer by,  the fact that his belt was not feeling good right.  He was over stimulated,  over worked,  starting to hit others and me.  I haven’t seen such behaviors in a few years.  Goes to show it never truly goes away in autism,  it just manifests itself in different ways. 

After today,  I just want to hide out in the comfort of our home and not be stressed with what can trigger him from the outside.  I’d even opt to give him a sensory break from implants if it helped calm himself.  I wish I can just take away his anxiety or stress. After dealing with  autism for a few years,  you wouldn’t believe the perspective you have in this world. It definitely makes you think twice,  heck three times for me.  Once for deafness,  twice for autism,  three times for adhd.  He’s my perfect trifecta.  This is him today late the afternoon,  still complaining of pain.  But he is hearing.  I wish I knew buddy,  I wish I knew how to help you.

Read Full Post »

Throughout the year there have been minor issues that I have managed to alleviate through swapling of parts with the spares Cochlear provides upon our activation a whopping 5 + years ago. 

Two grand old carry on sized boxes were provided and we knew nothing about the contents.  Completely overwhelmed,  I figured we’d figure it all out at some point throughout our lifetime journey.

Fast  forward to now,  and LJ has been having on again,  off again issues from,  the right hurts, it’s too loud,  my head hurts,  etc.  You name it,  it has happened this summer going into the fall school year so much so,  that we have ceased to wear the right entirely for a week.   And just in time,  we had our scheduled audiology appointment scheduled with Cochlear Audiologist to help us with our issues.   I ensured we had all paperwork in place,  referrals and approvals galore.  

First, I mistakenly thought the appointment was at 11 when it was at 10:30. Totally.,  my mistake and I chalk it up to the stress of the school district.  Solely,  still fault.  Calendar flop. Oh,  well.  Let’s fast forward to this 4 hour appointment.  Yes,  four. We all made the mistake of not testing him at the booth prior to our adult conversations of electrodes,  troubleshooting,  swapping of parts,  interview to understand the sequence of events that have led to this appointment…. All the while an entire 3 hours came and gone.  I was wondering why LJ began to act up to the point where he began to throw puzzle pieces and the individual who’s sole job at that time was to keep him occupied.  Poor lady.  She was an intern to become what I would presume, a pediatric audiologist and she had the awesome task to entertain my child who doesn’t like women all that much.

The problems: intermittent signals on the left,  no response on the right.  Lights flashing but no sound.  His continuous complaints for months of pain –  yet not being able to determine if it is pain of volume or pain from physical issues or internal device. Then both implants shutting off unexpectedly. Swapping two coils  and having none to spare.  All of which are completely out of warranty.  So imagine the stress I had!

Her pale face had red marks from the wooden puzzle pieces that were pegged at her face.  He was clearly over the appointment. He was laughing in hysterics because he knew that she was getting pissed and you can see the look on her face.  My child can be intuitive and could see that she’d reached her limit and I just decided to take over all the while attempting to have a serious game plan discussion on what we collectively would do after this appointment.  They were actually all amazed at how compliant he was with me,  but how he didn’t care much for the poor lady.  And this is how much I know much child.  In a simple ten minute observance,  the audiologist from Cochlear said, ” you are seriously in sync and in tune to what triggers him and what he can potentially do,  that you prevent it before it even happens.  That’s so impressive.”  and while she said that I caught him mid throw about to peg the said lady with a giant wooden puzzle piece. 

They did us the courtesy of checking all our parts. Readjusted some maps, flagged concerns and provided a game plan on what we all had to do in the course of the next few weeks. 

I wish it were an easy fix but we all agreed to rule out medical issues of the internal device and if (BIG  IF) the ENT specialist believes there is an issue we may have to,  in the last and worst case scenario,  deplant and reimplant.  I felt myself well up with all the same emotions P re surgery, 5+ years ago and I had to compose myself because we haven’t even gotten there.  I pray to all that I have,  it isn’t the case but am seriously grateful that we had 4 bodies that came out with a game plan on how we can move forward.  She’s hoping that the upgrade,  sorry, new devices of the N6 that I applied for 2 months ago will be improved so that we can see if it will alleviate any hardware issues.   A lot of theories were thrown around: electrodes malfunction,  hardware issues,  mapping glitches or corruptions,  internal device movement or displacement,  mapping interference, a whole lot of tech I can terms that I felt like an audiologist completely understanding what was being said,  terminology and all.  Why and how!? Because I have secretly been obsessing about the possibilities and I felt I needed to be prepared.  I hate being overwhelmed with terminology that I don’t know,  walking into an appointment with my clueless face and having them educate me when I feel it is my duty to know. I know I put pressure on myself a but much. But because I did my secret obsessing,  I was able to have a fluid conversation with audiologists like I was a colleague.  I still asked questions though. Had to.

I pray it isn’t the surgery route.  Pray with me why don’t you.   If it is,  I’m comforted in knowing that we have the resources to do this.  Some don’t.  The upside is that he will also upgrade his internal device and I would like to think that those parts have improved in the last 5+ years.  That’s comforting as well. 

I pray that he does get approved for the new devices. Lots of new and exciting options that I’m sure will benefit his hearing quality as well as accessibility for me as a parent.  Pretty exciting.   While half the world is busy lining up for the new Apple iPhone,  I’m here hyped up about my son’s hearing device. 

Today was exhausting to say the least.  I tried to give him a treat with riding a steam train after the appointment.   He halfway enjoyed it but I knew he had reached his limits when the littlest things that don’t usually trigger a meltdown, went into high gear.  The sound of the train,  the scream of a child,  the look of a Passer by,  the fact that his belt was not feeling good right.  He was over stimulated,  over worked,  starting to hit others and me.  I haven’t seen such behaviors in a few years.  Goes to show it never truly goes away in autism,  it just manifests itself in different ways. 

After today,  I just want to hide out in the comfort of our home and not be stressed with what can trigger him from the outside.  I’d even opt to give him a sensory break from implants if it helped calm himself.  I wish I can just take away his anxiety or stress. After dealing with  autism for a few years,  you wouldn’t believe the perspective you have in this world. It definitely makes you think twice,  heck three times for me.  Once for deafness,  twice for autism,  three times for adhd.  He’s my perfect trifecta.  This is him today late the afternoon,  still complaining of pain.  But he is hearing.  I wish I knew buddy,  I wish I knew how to help you.

Read Full Post »

Throughout the year there have been minor issues that I have managed to alleviate through swapling of parts with the spares Cochlear provides upon our activation a whopping 5 + years ago. 

Two grand old carry on sized boxes were provided and we knew nothing about the contents.  Completely overwhelmed,  I figured we’d figure it all out at some point throughout our lifetime journey.

Fast  forward to now,  and LJ ha S been having on again,  off again issues from,  the right hurts, it’s too loud,  my head hurts,  etc.  You name it,  it has happened this summer going into the fall school year so much so,  that we have ceased to wear the right entirely for a week.   And just in time,  we had our scheduled audiology appointment scheduled with Cochlear Audiologist to help us with our issues.   I ensured we had all paperwork in place,  referrals and approvals galore.  

First, I mistakenly thought the appointment was at 11 when it was at 10:30. Totally.,  my mistake and I chalk it up to the stress of the school district.  Solely,  still fault.  Calendar flop. Oh,  well.  Let’s fast forward to this 4 hour appointment.  Yes,  four. We all made the mistake of not testing him at the booth prior to our adult conversations of electrodes,  troubleshooting,  swapping of parts,  interview to understand the sequence of events that have led to this appointment…. All the while an entire 3 hours came and gone.  I was wondering why LJ began to act up to the point where he began to throw puzzle pieces and the individual who’s sole job at that time was to keep him occupied.  Poor lady.  She was an intern to become what I would presume, a pediatric audiologist and she had the awesome task to entertain my child who doesn’t like women all that much.

The problems: intermittent signals on the left,  no response on the right.  Lights flashing but no sound.  His continuous complaints for months of pain –  yet not being able to determine if it is pain of volume or pain from physical issues or internal device. Then both implants shutting off unexpectedly. Swapping two coils  and having none to spare.  All of which are completely out of warranty.  So imagine the stress I had!

Her pale face had red marks from the wooden puzzle pieces that were pegged at her face.  He was clearly over the appointment. He was laughing in hysterics because he knew that she was getting pissed and you can see the look on her face.  My child can be intuitive and could see that she’d reached her limit and I just decided to take over all the while attempting to have a serious game plan discussion on what we collectively would do after this appointment.  They were actually all amazed at how compliant he was with me,  but how he didn’t care much for the poor lady.  And this is how much I know much child.  In a simple ten minute observance,  the audiologist from Cochlear said, ” you are seriously in sync and in tune to what triggers him and what he can potentially do,  that you prevent it before it even happens.  That’s so impressive.”  and while she said that I caught him mid throw about to peg the said lady with a giant wooden puzzle piece. 

They did us the courtesy of checking all our parts. Readjusted some maps, flagged concerns and provided a game plan on what we all had to do in the course of the next few weeks. 

I wish it were an easy fix but we all agreed to rule out medical issues of the internal device and if (BIG  IF) the ENT specialist believes there is an issue we may have to,  in the last and worst case scenario,  deplant and reimplant.  I felt myself well up with all the same emotions P re surgery, 5+ years ago and I had to compose myself because we haven’t even gotten there.  I pray to all that I have,  it isn’t the case but am seriously grateful that we had 4 bodies that came out with a game plan on how we can move forward.  She’s hoping that the upgrade,  sorry, new devices of the N6 that I applied for 2 months ago will be improved so that we can see if it will alleviate any hardware issues.   A lot of theories were thrown around: electrodes malfunction,  hardware issues,  mapping glitches or corruptions,  internal device movement or displacement,  mapping interference, a whole lot of tech I can terms that I felt like an audiologist completely understanding what was being said,  terminology and all.  Why and how!? Because I have secretly been obsessing about the possibilities and I felt I needed to be prepared.  I hate being overwhelmed with terminology that I don’t know,  walking into an appointment with my clueless face and having them educate me when I feel it is my duty to know. I know I put pressure on myself a but much. But because I did my secret obsessing,  I was able to have a fluid conversation with audiologists like I was a colleague.  I still asked questions though. Had to.

I pray it isn’t the surgery route.  Pray with me why don’t you.   If it is,  I’m comforted in knowing that we have the resources to do this.  Some don’t.  The upside is that he will also upgrade his internal device and I would like to think that those parts have improved in the last 5+ years.  That’s comforting as well. 

I pray that he does get approved for the new devices. Lots of new and exciting options that I’m sure will benefit his hearing quality as well as accessibility for me as a parent.  Pretty exciting.   While half the world is busy lining up for the new Apple iPhone,  I’m here hyped up about my son’s hearing device. 

Today was exhausting to say the least.  I tried to give him a treat with riding a steam train after the appointment.   He halfway enjoyed it but I knew he had reached his limits when the littlest things that don’t usually trigger a meltdown, went into high gear.  The sound of the train,  the scream of a child,  the look of a Passer by,  the fact that his belt was not feeling good right.  He was over stimulated,  over worked,  starting to hit others and me.  I haven’t seen such behaviors in a few years.  Goes to show it never truly goes away in autism,  it just manifests itself in different ways. 

After today,  I just want to hide out in the comfort of our home and not be stressed with what can trigger him from the outside.  I’d even opt to give him a sensory break from implants if it helped calm himself.  I wish I can just take away his anxiety or stress. After dealing with  autism for a few years,  you wouldn’t believe the perspective you have in this world. It definitely makes you think twice,  heck three times for me.  Once for deafness,  twice for autism,  three times for adhd.  He’s my perfect trifecta.  This is him today late the afternoon,  still complaining of pain.  But he is hearing.  I wish I knew buddy,  I wish I knew how to help you.

Read Full Post »