Friday, January 14, 2011

Huh? Huh? What?!

My son, Jacob, is 8.  He has minor hearing loss and tinnitus (ringing in the ears).  It's been a long road to get him diagnosed and we're still not finished.  Here's his story.
He was a cute and happy baby.  As a toddler his speech came slowly but not noticeably slow.  As a mom, I worried because while he was talking he wasn't following the typical "two word sentences at two" and "three word sentences at three" sentences.  It also seemed like if he couldn't see your face then he was less likely to hear or understand what you were saying.
He started preschool at three and in January during parent/teacher "conferences" the lead prek teacher let me know that she too felt that he was having some hearing issues.  She said that when she spoke to him ,many times he did not respond unless she got down at his level where he could see her speaking.  She believe he was reading lips.  My mother and I were thinking the same thing at that point.  While he did well in class, he did have trouble at times getting along with the other kids because he couldn't always understand what they were saying to him.  At that point, I wish the teacher had given me guidance on what I could do.  To this day I'm upset that I didn't have the information then that I have now.  He could have had speech intervention and such before starting elementary school.
He had his first (double) ear infection that spring (2006) and that started the ball rolling.  Unfortunately, has rolled very slowly.  He didn't get enough infections to qualify to have tubes but we noticed things still weren't right.  Ironically, even after I told the elementary school, he passed their hearing screening for kindergarten.  I still don't understand how and am baffled.  Thank God for a speech teacher that heard him talking in the hallway because she heard his speech problem and pulled his teacher aside to discuss it.  I had spoken to his teachers and they were aware of his situation.  Both his teachers were understanding and vigilant.  It helped that one teacher had a special ed background and had a nephew with hearing loss.  The other had a grandchild that was deaf.  So, the teacher promptly called me and we discussed him going into speech.  I was ecstatic.  The speech teacher took it upon herself to get him into the program without an IEP.  She had a spot and insisted that he be put into it.    I will always be grateful to her. 
By that point we had found an ENT that was tracking the fluid in Jacob's ears.  It was determined that his hearing was being effected by the fluid never draining and becoming stagnant.  This took 6 months of documentation so that the insurance company would authorize the surgery.  He had his first one in January 2008.  He had his adenoids removed and tubes put in.  He had a second surgery in April 2009 to replace the tubes.  Finally, in July 2010 the tubes were removed.
During all this he was being tested by an audiologist at the ENT's office.  The results always showed minor hearing loss.  Armed with this evidence I was able to secure an IEP for Jacob in Jan. 2009.  I needed it for him to continue speech and get preferential seating and such in the classroom.  The start of first grade was a nightmare because he didn't have either.  I feel that first grade was a year of fighting for him, especially since he was in a classroom where the teacher had no real control of her students.  It was a very rough year and he lost a lot when it came to reading, spelling, comprehension and overall behavior.  To this day, I believe it effects him.  I wish we could do that year over, especially with another teacher.
The IEP has definitely helped.   I send in a personal note to the teacher(s) at the beginning of each year and we discuss details at parent/teachers conferences.  Last year we changed audiologists because we needed more detailed reports and information for our CSE (Committee for Special Education) meetings.  With her help and that of a friend with special needs children I was able to get the school district to pay for auditory processing testing.  Unfortunately, we had to go this route because our insurance does not cover these tests. The testing has pinpointed exactly where his hearing loss is and that he also has tinnitus.  We can not confirm auditory processing because of the hearing loss but signs of it are there.  The audiologist said my son was the hardest patient she has ever tested in her 20+ years of experience.  Many times he would test false/positive.  The testing took 4 sessions because of this.
The good news, is that he is finally authorized for an FM unit.  This device brings the teachers voice closer to him.  She wears a small mic and he has a small wireless ear bud (similar to a hearing aid).  The districts Hearing Impaired Teacher set him up with it last week.  Unfortunately, for some reason, his teachers have yet to start using it.  So, I emailed her and she will be in his classroom today.  Hopefully, that will be resolved.
Our new fight now is hearing aids.  The audiologist said that she would not necessarily aid everyone with his range of hearing loss but because of the tinnitus and his attention span she wants to test it.  Most insurance companies cover up to fifty percent of hearing aids.  Ours does not cover anything.  The aids cost approximately $4,000.  We don't have that kind of money., especially since I am out of work.  I ache inside that we can't buy them and I feel like a horrible mother.  The audiologist mentioning the possibility of renting some from her to see if they help and that's the route we may take.  If they work, we still have to figure out the financials.  This is a tough situation and we want to do what's best for our son, while keeping our family afloat financially.  I don't envy any parent in this situation.
The hardest thing, besides the obvious, is that his hearing loss or speech problems are not noticeable.  Many people would never realize it unless they were told.  He is one of those children that can easily fall through the cracks of the educational system if we don't advocate for him.  Winter seems to be his enemy and there are many days, like today, where he is constantly saying, "Huh?  Huh?  What!".  I have to remember, as do his teachers, that as frustrating as these moments are for us, it is worse for him.  The same goes with his schooling.  Math comes easy to him, if it doesn't include word problems.  And reading and spelling can be a nightmare.  This is all because he does not hear words, especially word endings, properly.  He has to work harder than many of his classmates.  He doesn't want to and let's be honest, what kid wants to put in extra time with school work.
So, our battle (his and ours) rages on.


WriterMomBarb said...

You are NOT a horrible mother! You are a loving, wonderful mother who is doing the best for her son that she can.

Hungrigyrl said...

Wow, that is a lot you all have to go through to get help for your little man! I am interested in this post because my 2 yr old seems to be a little behind in speech and I'd like to get him evaluated.

Mommy's Juggling Act said...

WriterMomBarb...Thank you for your kind words. It's a slow process.

Mommy's Juggling Act said...

Hungrigyrl....It's been a long journey and I wish I knew back then what I know now. I definitely feel it's good to get your son evaluated if you feel there might be a problem. Always follow your mother's instincts. I would speak to your pedicatrician and they should direct you to an ENT or audiologist. If they feel everything is fine then I would find an ENT yourself and go from there. Good luck and keep me up to date on his journey. I'm going to head over to your blog now.