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Amy’s Story: Raising a Son with Hearing Loss and Autism

May 9th, 2011 by | Tags: , , , | 11 Comments »

Amy shares her journey of raising a son with hearing loss and autism.  She speaks about the obstacles of finding ways to provide her son, Andrew, the best tools to treat both of his disabilities and to ensure the Andrew can meet his fullest potential.

A long time ago, in a galaxy far far away…  well that is how it seems.  As I prepared to write this article, I was sent searching through my pictures to find one the day Andrew was diagnosed as profoundly hearing impaired.  You see, he was born before the digital age, so I had to go through a few boxes of actual print pictures to find it!  I was recalling all the fun, and difficult times we have had over the last 10 years as I thumbed through the pictures.

Andrew was born with a profound sensorineural hearing loss and was implanted at 13 months of age.  He was born early, received the proper hearing test in the NICU and I was told by the pediatrician that he might “grow into his hearing.”  I was a new, first time mom.  This, my dear friends, is not the case and I find it difficult to believe that such a good doctor could even utter those words.  Thankfully, I am a pursuer.  And pursue I did.  We went ahead with the appropriate testing and on October 31, 2000, just two months after Andrew was born, we had a confirmed diagnosis.

The “good” audiologist told us that our Early Intervention folks would call us.   Again, I am thankful I did not sit on my laurels.  My husband and I made calls, got in programs, had our first run in with IEPs and so on.  We have in our area passionate teachers of the hearing impaired.  Don’t tell anyone this but they let us in the classes even before we had a signed IEP.

Andrew also had other delays early on in his life.  I have a very good friend who is also now Andrew’s developmental pediatrician.  She told me many years later that when I was at her house visiting when Andrew was only a couple of months old, that she knew there were other things wrong with him.  But what was she going to do at the time?  I was doing the proper things…getting in involved with Early Intervention, going to PT, OT and even speech.

So… I have let the cat out of the bag.  Andrew has other things going on in addition to his sensorineural hearing loss.

I have to say we have been blessed for ten years with an incredible team of professionals that have gone above and beyond.  Even looking back I see God’s favor.  Those in Early Intervention know that support is minimal.  We were dual enrolled in our district’s program as well as the county’s hearing impaired program.  We had PT, OT and classes in both programs as well as a Teacher of the Hearing Impaired coming to the house.  This teacher was assigned to come once a week…and she often came twice.  We were going to classes for those who were involved in both sign and oral in an effort to make our cochlear implant decision.  God also put in our life Mark’s cousin Jeanie.  She is a Teacher for the Hearing Impaired in the Upper Peninsula in Michigan.   Sometimes I think of God sitting up there when Jeanie was born and peeking ahead to when Andrew was born..knowing there would be a connection.

When Andrew was thirteen months he received his cochlear implant.  The surgery went very well and we started Auditory Verbal Therapy immediately.  And we worked….and we waited..and we worked..and we waited..and we switched therapists…and we worked..and we waited.  And nothing.  And we wondered was this the right thing to do??

During this time several speech therapists suggested that Andrew start occupational therapy for sensory integration.  I balked at the idea because our initial occupational therapist said that this wouldn’t work for Andrew because he has an inner ear malformation.  We were also doing physical therapy at the time because Andrew was not walking at age one..or two.  I knew in my gut we should try it.

Finally we started both PT for the walking and OT for sensory integration.  We were doing this through the schools but added on private services.   We also started a hearing impaired oral preschool.  Once again God put together a wonderful team of people.   Andrew started to walk, and eventually he did start to respond and talk.  One of the first words he said was when he was around four years old.  We were walking into Meijers (a grocery store) and he pointed to the sign overhead and said..WELCOME.  That’s what it said!  OK…so my kid can read!  He is still a reader and loves words.  He spells better than I do and will read anything he can get his hands on.  This is a picture from a walk we were taking.  It is a tag on the fire hydrant..it has words..therefore he must read it.  You can scroll down to the previous post where I posted just one of the many poems he has written.

When Andrew was in the oral preschool we knew there were other things going on.  We always KNEW that but we needed additional supports.  Andrew is a complicated kiddo.  In the schools you need labels. So we did the proper evaluations and added autism to his IEP.  The professionals were awesome in our county’s hearing impaired program and although some have problems getting additional services, this was not an issue for us.  Andrew’s developmental pediatrician doesn’t necessarily agree with this label and I don’t know if I do either even five years later, but there are ‘other things.’  We finished out Andrew’s early years in the oral preschool with an autism consultant and other additional supports.  But then it was time to make a decision for kindergarten.

There were three choices.  1) Hearing Impaired K-4 classroom, 2) autism classroom or 3) mainstream.  None of these fit well. Andrew could read and clearly even the ‘accelerated’ reading programs were below his capability.  I didn’t see the county’s hearing impaired elementary as a good solution.  The autism classrooms were, in our district, mostly about babysitting.  And there was no way he could be mainstreamed so we decided to homeschool.

Homeschooling has worked well for us.  If I am to be honest, I will tell you that if I could find the right public or private school, I would put Andrew in it.  And I am not going to go into detail on why we don’t have that in our area.  But homeschool can be, and is for us, a blessing.

There are other interventions we have done as well.  When Andrew was still in preschool we started a gluten and casein free diet.  This does not work for all children but does for him.  Our developmental pediatrician is open to both biomedical interventions as well as medication and we do not rule out medication.  At this present time we are treating Andrew with antibiotics for PANDAS.  Some of the PANDAS signs are tics and OCD type behavior.

We also started Relationship Development Intervention for the autism.  This program is much different than both ABA or Floortime, both of which are done for autism.  RDI focuses on….relationship and it gives hope because it takes the child back to square one to focus on reconnecting those brain snapases in the proper way.  You can start RDI at any age with a child.  It is never too late.  It is funny because much of what we are doing with RDI is non-verbal but we are blessed to get a consultant who gets Andrew as a WHOLE child and knows that his implant is part of who he is, so she does not take AWAY the verbal- because that is so important to him.  (Much of language is non-verbal and Andrew did not intuitively pick up on this.  In addition we focused, rightly so, on verbal after the implant.  So we are getting a mulligan on the non-verbal right now…as well as working on various behaviors and ‘stuff’ that goes along with autism.)

There are some unique challenges when you have an implanted child with ‘extras.’  For one thing, we still wear the BWP..body worn processor.  Andrew has worn it since he has been a year old.  The BTE…behind the ear… feels different, sounds different and change is very very hard for a spectrum kid.  I also would like to look into bilateral implants but honestly, until a year or so ago, getting Andrew to change to shorts in the summer was too much change for him.  When he was a year old we could easily make him wear his implant.  At 10, it is a different story.  He has to buy in.  There are ways that you can help facilitate this of course and our decision to wait is thought out and made with prayer.  I do know others who have kids with both autism and bilateral implants so if you are interested, please pursue it!  They were not doing bilateral implants when Andrew’s surgery was completed.

I feel that we spent the first five years focusing mostly on the hearing impairment and the next five focusing on the ‘extras.’  I feel the pendulum switching back.  I am reading all the updates that have occurred over the last few years in the HI world, seeking information and getting involved.  It is impossible to know and do everything and we just need to take it one day at a time.

I am thankful that he can talk…and well..and often.  The cochlear implant has been an incredible blessing and clearly was the right decision.

We have had some really rough days when it comes to the ‘other’ areas with Andrew.  I am thankful that he can talk…and well..and often.  The cochlear implant has been an incredible blessing and clearly was the right decision.  One day he dropped the ‘F-bomb’ in a museum.  I’d like to say that he learned that in school, but we homeschool.  Then there was a day when he was about five that he had such a large tantrum in Target that I had to drag him to the parking lot.  I couldn’t drive with him in that state so we sat there for 90 minutes.  At that point I saw the security guy come out because someone had mentioned a screaming kid in the parking lot.  Thankfully he had seen the whole thing and we were actually pulling out when he was walking to the car.  Just last week, (he’s 10 now), he ran out of the yard and INTO the neighbor’s house.  He was having such a fit, and they took such pity on me that they brought US cookies.  I didn’t have the heart to tell them we don’t eat gluten or milk.  I just said thank you.  Even at our last audiology appointment, Andrew could not participate the way a typical 10 year old would to get a good map.   He did however manage to interview our audiologist.  It is lovely and shows how far he has come.  Here is that interview for you.  (This is my first go at captions.  I need to clean it up but this is the first pass and it is read-able.)

When you have a child with autism AND a hearing impairment, you have to really pave your own road. There is no perfect one.  I have had to lean a lot on Jesus.  For decisions, for comfort, for mistakes…  I just wrote a post for another blog that I have, and in a nutshell, when it gets right down to it, the only way for me to make it through some of the really rough days is to give Him ALL of it.

There have been many decisions that we have made where I wonder if they were right.  But the implant has always been the right decision.

11 Comments

Sandy

May 10, 2011 at 12:24 am

This article was almost written from the “story” of my life too! My son and Andrew’s developmental milestones almost mirror one another! It’s almost like they are a clone of each other. There are few differences but the challenges and rewards are the same. Thanks for sharing!

EmilySLP

May 21, 2011 at 3:27 am

It kills me that a audiologist told you your child might grow into his hearing! Early intervention and having proactive parents, like yourself is the most important keys to have. Thanks again for your article … Important for parents and professionals to read!

Carrie

February 19, 2012 at 2:20 pm

There are others!!!! YAY!! We have an extremely similar story with my 15 yr old, although because of the hearing impairment we didn’t get our “official” autism spectrum diagnosis (technically Asperger Syndrome) until he was nearly a teen. He also wasn’t implanted until he was 8 because docs felt he was getting enough from his hearing aids.

What a story! I would love to keep in touch with the other parents in this situation — we need each other!

Mary Jo

April 2, 2013 at 5:45 am

Wow there are others…kinda felt all alone out here! My son is ten severely autistic non verbal severe hearing loss uses minimal sign language. In search of a better way… I have had it with the school system!
How can we all text / talk?
Mary Jo

Carrie

April 5, 2013 at 1:11 am

I as well have a similiar situation!! I think we all need to communicate!! I felt so alone these past 6 years with my son. I am relieved to have found this article!!!

Mary Jo

April 5, 2013 at 4:02 am

Carrie. Hi I would like to be able to email I use aol. Name is mitchibu at aol. Send a message if you can
Mary jo

mine yanmaz

April 10, 2013 at 7:17 pm

my son is 12 years old and he has autism and kohlear implant. In Turkey doctors, teachers… no one help us about education or theraphy. ?m very sorry. I think my son is one in the world but now I learned and I m crying.

Mary Jo

May 2, 2013 at 8:44 am

Mine and Carrie … We are special moms with unique kids. It is hard to always log on to this site can we e mail each other!?? My e mail is mitchibu @ aol.com.
Mime I’m sorry it made you cry but see ?? There are others and you are not alone! How is your son doing?
Mary Jo

Laurie

June 19, 2013 at 1:05 am

I am working with a little 5 year old boy who has cochlear implants and is autistic in church. I came on to see if there was any information online to help me with him for the two hours I have him on Sunday. If there is anything you can tell me I could do to make Sunday worth his time. He is very sweet and his only communication is sounds not words.

amy

August 16, 2013 at 4:55 pm

Hi this is amy here. I just realized there were some comments from several months ago. My bad. Happy to connect with anyone who is interested. leave me your email here and i will send you a note.

Amy

Mary Jo

August 17, 2013 at 12:28 am