Accommodating

Brian's doctors have always maintained that he is quite intelligent and because of that he would find ways to work around his hearing loss.  He has often impressed us with his ability to create his own accommodations.

In December Brian completed his second round of MAPS testing.  This testing is done three times a year to see where students are in math and reading.  Testing is done on a computer and requires the use of headphones.

His first round of MAPS testing was in September and was incredibly frustrating for us.  He had just gotten his hearing aids, and the school as unable to provide the proper technology for him on short notice.  I made sure to let his teachers and specialist know that the best scenario for him would be to be tested in a room where the computer speakers could be used rather than headphones, but if that didn't work out, his hearing aids should be removed.  I offered multiple times to stop by and teach them how to remove the hearing aids. 

After testing I found out that basically none of this happened.  I knew I had not taught them how to remove the hearing aids because they never set up a time for me to do so.  (This by the way would have taken about 3 minutes to do...it's not rocket science.)  However, I didn't know that the rest of my requests had been ignored until it was too late.  I was INFURIATED to find out that for much of the testing the headphones were placed OVER his hearing aids which anyone with half a brain knows caused a tremendous amount of unnecessary feedback.   Just ridiculous.

I moved on because what else could I do?  The school ordered the appropriate equipment.  We did our part by getting the replacement battery covers from our audiologist so that the cord could be plugged into his hearing aids.  So I was pretty darn mad at pick up on the first day of December MAPS testing when he came to me upset because he had huge gold covers on his red hearing aids.  Poor guy.  The speech therapist explained that the ones the audiologist provided weren't a match with the cord the school ordered, so they had to use the gold ones.  Fine.  I let it go and told the speech therapist I would speak with our audiologist and find a solution for May testing.

At the audiologists recommendation,  I asked Brian's school if I could borrow the cord and battery covers (boots) so that the audiologist could figure out what the problem was.  It was a huge, big deal apparently and I had to wait for the school to get permission to loan me the equipment and then I had to sign my life away so that I could take it off school property.

I took it all and dropped it off for the audiologist.   I got a call the next day from Children's, which I missed, and I assumed the audiologist had looked it over and it was ready for me to pick up, so I headed over there (this was one of the lovely below zero days we have recently been treated to).  When I told the receptionist why I was there she called the audiologist who informed her that he needed Brian's hearing aids.  I told her that was fine, but that we needed them back for school the next day.  She suggested we go shop and come back in an hour.  Just what I wanted to hear.

An hour later we returned to find that the audiologist had changed the battery covers back to the gold ones basically completely ignoring what we had discussed.  I was beyond frustrated at this point after having gotten the kids in out and in the freezing cold three times at this point and after having spent money unnecessarily at the bookstore only to have my request completely disregarded.  I was told I would have to wait 1-2 hours which was an insane suggestion, so we left.  Brian was upset, but bless his heart, he agreed to wear the aids with the gold covers until I could get it straightened out.

By the time we arrived at home the audiologist was calling (1-2 hours my you know what).  He did exactly what he needed to do and whole-hardheartedly apologized for the screw up.  Then he talked me through fixing the issue.  We also talked about getting red boots to replace the gold ones.  He asked me to find out of the school would order them because they can get them MUCH cheaoer, and of course I will pursue that, but in the end we don't really care what they cost as long as Brian is comfortable in them.  Finally he said, "Maria, the most important thing is, you need to know, the cord from school wasn't working.  You have to program the aids to work with the cord and it wasn't programmed.  I fixed it, but there is no way the cord worked for December MAPS."

WTH?!!!!!!!!!!!!!

So I spoke with the speech therapist at school this past week about the audiologists findings.  She couldn't believe it.  She said she sat with Brian the whole time and he was even repeating questions aloud that were being asked through the headphones.  She had headphones in too and was hearing everything the test was saying.  I just kept saying, I don't know what to tell you, the audiologist said it wasn't programmed properly.  Finally she had an aha moment.  She said, "Oh Maria.  He had me turn the volume all the way up.  It was so loud that I couldn't stand it and had it down around my chin."  But that didn't make any sense.  Why would he want it really loud with his hearing aids in?  And really his hearing aids prevent sound from getting too loud, so it really made no sense.  She went on,  "Maria.  He was listening through MY headphones!"  Oh. My. G!

I am really, really proud of Brian for accommodating for himself when the adults failed him a second time, but I am really freaking frustrated with the adults for failing him.  Again.  Get it together people!  I really don't understand what is so complicated about this.  I know for a FACT he isn't the only kid in the school who has hearing aids and he certainly isn't the only one in the district.  Far from it!

Bless you if you read all of this.  I know it's a lot of explaining, but I wanted to be sure to put it out there in case anyone out there finds my blog and is looking for help with their child with hearing loss like I was years ago when I found No Small Thing.  Kirsten's words and advice were so incredibly comforting to me and there isn't enough out there for parents of children with hearing loss as far as I'm concerned.    I was always searching for someone who could really related and I hope I can be that for someone in need.

On a side note, Brian does more than just accommodate for himself.  He continues to excel and impress all of us with his abilities!  Last week he was named Student of the Month for Extraordinary Creativity AND Writer of the Week-IN THE SAME WEEK!!  He was sooooo excited to show me the letters from school.  His Student of the Month Ceremony is next week, but the Writer of the Week Award was posted at school this week.  (In case you are keeping track this is his SECOND Writer of the Week Award this school year!!)  And I'm such a dork, so I took a picture.

Out of the Mouths of Babes

Sometimes I just have to stop and write down some of the things that my kids say so I never, ever forget them.  I have had two of those moments in the past few days...

Lilah

My lead teacher is VERY pregnant and we have had several false alarms where we thought she would deliver and then she hasn't.  Thus there has been much talk about baby Bella, when she's coming out, etc.  Bella will be hanging with me and Lilah in my office during the school day once here mommy returns from leave, so there has also been much discussion about who will hold the baby and how careful we will have to be with her. 

I tell the kids often that they have to be happily married before they can have kids.  I also tell them that babies come out of their mommy's hearts because the mommy loves the baby so much.  I mean, they are 5 and 2...that's as far as I am going with that discussion.

So this is the conversation I had with Lilah the other day...

L: "I'm married."
Me: "Oh really.  Who did you marry?"
L: "My Brian-boy."
Me: "Oh wow, that's great Lilah."
Longish pause...
L: "I have a baby in my belly."
Me: "Oh, do you?"
L: "Yep. Her name is Bella.  She's going to come out of my heart.  You will have to hold her.  I might drop her and she could get hurt really bad."

Two going on 17.  For real.

Brian

Today at the gym when I went to pick up Brian, a middle school aged girl stopped me and said, "I really like your son's hearing aids."  I replied, "thanks so much, sweetie!"  She lifted her hair to show me that she also has hearing aids.

As we walked out, I asked Brian if he noticed that she had hearing aids too.  His response...

"No.  What kind were they mom?"

Me: "Oh I don't know, red and brown, maybe."

B: "No MOM what SUPERhero?  (Insert eye rolling.)  Red and brown?  They must have been Iron Man ears."

LOVE him.  

Fall and a Brian Update

This should really be two posts, but I am out of time today!  Tomorrow is set to be our last aural rehab appointment.  This means that Brian has done a great job transitioning to wearing his hearing aids and he has met or is very close to meeting all of the goals they set for him!  This means we are heading back to what should be our last segment of time in private speech therapy.  Can I get a Hallelujah?   P.S. Brian also got a 100% on his first AR test today.  That kid rocks!

Onto the fall happenings.  We have visited many a pumpkin patch.  Lilah went twice with the preschool and we also went with some of our best friends.  One of the preschool days Uncle Bill and Gavin even joined us!

The kids are LOVING their costumes and have had several chances to wear them.  They have attended two Halloween parties-one at Brian's school and one at the preschool.  It's such a fun time of year with kids!

I apologize for the many, many pictures below.  There were many, many more taken :)

Brian LOVES these things!

This is the new thing...finger in nose.

He made the pin after getting it out of treat box.  So excited!  He later gifted it to his teacher. 

Had to get Bib's kissing pic!

Argh!

So excited to be riding a school bus to Brian's school Halloween party!

Proudly showing off his class pumpkins!

Cool spider hats they made at the preschool Halloween party.

Spiderman

Brian got his Spiderman ears on Thursday.  We decided to go ahead and try two.  He didn't have any issues adjusting to one, so we don't foresee any issues with two, and so far that's held true.  He was excited to see them and to show them off!  Now we just have to keep at the aural rehab and eventually move back into speech therapy and hope they pay off.  We are working on his auditory memory in aural rehab.  Yesterday the therapist retested his ability to differentiate between same sounding words and he is much improved in that area already.

To Aid or Not to Aid?

That has been the question Brian's entire life.  We have had a variance of opinions on the matter since he was born.  It's been...well to say frustrating would be the understatement of the century.

So here is where are today.  We are doing a hearing aid trial.  We've come to the conclusion that we will never know if it would have helped him if we don't try.

We've been telling people little by little that this is the decision we have made and have gotten mixed reviews as expected.  The most frequently asked question has been, why or why now?  I understand that people will think there has been some sort of defining moment that struck us and steered us in this direction and that's honestly not the case.

He seems to be doing well in Kindergarten.  His speech continues to progress.  Are there holes in his speech?  For sure.  Do we think it could be better with hearing aids?  Probably.  We hope so.  With or without hearing aids, we want his speech to be the best it can possibly be.  So why not try them and see if they help?

We have also been asked if the aids are effective if we will wish we had tried them sooner.  Of course, we will to some extent, but honestly, we had reasons, good reasons, to wait.  We wanted to see how far  we could go with speech therapy.  We wanted Brian to learn to work hard for things.  We needed to see what kind of a kid he was going to be.  Luckily, he's a pretty confident kid.  He is comfortable with himself and we believe he will wear his hearing aids proudly.  Also, there will be plenty of instances in which he won't be able to be aided.  The pool, the beach, bath time...all examples of instances where hearing aids can't be used.  It will be nice to know his capabilities in these instances so that he won't be able to pull the whole, "what?  I can't hear you...I don't have my hearing aids in."  :)  And finally, Brian had some MAJOR sensory issues.  He needed to work through those with the help of his OT before we could even consider adding something so foreign to his ears on a daily basis.  We are lucky and he has been very successful in learning to manage his sensory issues, so now we are at a point where we feel he can handle adding hearing aids. 

Brian is excited about the hearing aids.  Every five year old boy needs a super power and we've told him that this will be his.  He'll be getting "super hero ears." Well one for now...they trial with one, and two in the future most likely.

We went on Friday for the hearing aid evaluation and came home with the trial hearing aid.  It's smaller than we anticipated.  Because his loss is mild, the aid is smaller.  It makes sense, but for some reason we didn't realize this would be the case.  His trial set up is a black hearing aid that goes behind his ear and is connected by a tube to the green ear mold that goes in his ear.  We had a mold made about 2 years ago when he was out for a tube surgery and ABR.  This was supposed to be used with his FM system at school, but the county didn't purchase the system we expected and it wasn't necessary.  The mold still fits well enough to use it for the trial, so that's what we're doing.

In the weeks leading up to the appointment we did a lot of talking about the hearing aids.  We read a book about an elephant that gets them and Brian was very worried by the picture of the elephant getting fitting for the ear molds.  They use a syringe filled with goo to make ear impressions and to a 5 year old this looked very much like a shot going in the elephant's ear.  I made sure to share this with his audiologist and Tommy was very thorough with Brian about the process.  He let Brian play with the syringe, squirted the goo in Brian's hand, let him play with it, etc. before ever squirting it into Brian's ear.  Brian was a champ with this and got really excited when we showed him a picture of what it looked like as it was drying is his ear.  It looked like a snail shell and since "Turbo" is popular right now he thought it was just great that a, "snail was coming out of his ear!"  He's so funny!

Once he had the trial aid on he was really cute about it.  He checked it out in the mirror, tested out his own voice with it on, ran around in the hallway to "hear the air."  It was pretty cool to see him so excited.

He's supposed to break the aid in however suits him.  The goal, of course, is to wear it all waking hours (except swimming, bathing, etc.) so we are working up to that.  I think is uncomfortable for him at times, and he asks us to take it out, but today he was a rockstar with it.  He wore it to "make something" at Lowes, horseback riding, and a friend's birthday party...a total of about 6 or 7 hours.  He showed it off to everyone we saw and everyone has been really great and supportive of him.  It was nice that we had the party because now most of his school friends have seen it.  We are debating whether to send it to school on Monday, but I suspect he will insist.  The biggest issue is that this is a loaner, which means we owe quite a bit of money if it's lost or damaged so he has to keep it in!  It's hard to think about sending him somewhere that we can't control this...at least at first.  I'm sure it will get easier.  Once we go to two aids, which I expect we will, we will have to buy them (or the insurance will depending on what they decide to cover) and they will be insured, so we won't have that worry anymore.  He got to pick the colors for his permanent aids by the way and he picked red aids and blue/red swirl molds.  A mom who I found online whose son is aided once told me that she wanted her son to be proud of his aids and not ashamed of them.  We have adopted this mantra as well and therefore allowed him to pick what he wanted.  There will no hiding these babies, but that's great!  Everyone will know he is a superhero.

We appreciate your support and prayers as we delve into this new chapter.  So far it's honestly been a lot easier than we anticipated.  Hoping that will continue.  We'll keep you posted!

Brian showing off his new "super ear."  Er, and the inside of his nose...