Finding Out

Jacob was born full term after a perfectly normal and healthy pregnancy. He had an apgar score of 9 and there was no reason to think that anything could be wrong. Jacob was our first child, so upon bringing him home we had no previous parenting experience or any other baby to compare him to.

I remember the first time I noticed that something was not right with Jacob's hearing. My golden retriever barked really loud and I almost jumped out of my skin, but Jacob remained peacefully sleeping right next to the dog. I ran upstairs and checked my "What to Expect When You're Expecting" book, and the book plainly stated that if a baby is subjected to dog barking in the womb, he may not react. So I breathed a sigh of relief.

But something wasn't right with Jacob. He cried all of the time unless I was holding him, and he couldn't be soothed. He seemed to have severe colic, but it was more than that, I couldn't calm him down. When we were driving he would scream and scream, and I would have to pull over and go back so he could see me. Now this makes sense, because he couldn't hear me and he was facing backwards in the car seat. But at the time I couldn't understand why he was so upset. I did not know Jacob was hearing impaired, so my mothering was not as tactile as it became later. Knowing from the beginning would have made both mine and Jacob's first months much easier.

I went to the doctor again and again. They kept telling me it was colic, and to go home. I even asked the doctor if there could be a problem with Jacob's hearing, but he assured me that many 3 month olds don't startle.

At Jacob's 4 month check-up, I asked the doctor again about Jacob's hearing. I told the doctor he doesn't react to loud sounds, and he wasn't turning towards his name. The doctor asked me if Jacob was babbling. Now at 4 months old, babies make lots of sounds, but this isn't really babbling. However, Jacob was saying "ah" and "ahgu", so the doctor said this was babbling, and Jacob could not be deaf because "deaf babies don't babble". He was very condescending, and I felt very stupid and neurotic. However, I was so relieved. Jacob was making sounds, so he must be hearing. I thought this was proof. And Jacob's responses were inconsistent, sometimes he did seem to react to sounds.

He also was doing a couple of other things that seemed somewhat odd. At about 3 months, until he started crawling normally at 7 1/2 months, Jacob did a back crawl. He would be on his back, and stretch his head all the way back, and push off with his feet. I found out later that many deaf babies do that to see behind them because they are not hearing. Another thing that we noticed with Jacob is that he had a weird facsination with fans! He would stare and stare with wide eyes. I also found that to be a common deaf baby trait, but at the time we were wondering if maybe Jacob was autistic.

At 5 1/2 months old, Seth's (Jacob's father) aunt called us and said she couldn't hold it in any longer. She had been wanting to tell us that she really thought there was a problem with Jacob's hearing. I assured her that we had asked the doctor about it, and he told us there was no problem because "deaf babies don't babble". She told me that she had spoken to a speech-pathologist, and that just wasn't true. Deaf babies do babble - but stop babbling around 8 months old when they do not receive feedback. Furthermore, at 3 or 4 months old, what Jacob was doing was cooing more than babbling.

My heart sank and I had an anxiety attack. It was Sunday night and I had to wait until the next morning to call the doctor. After a sleepless night I did just that. Then I went into his office, with my hands on my hips, and said "I want his hearing checked. Just give me a referral to an audiologist."

"Fine," he said. "If it will make you feel better, I'll give you the referral. But I'm telling you, there is nothing wrong". He was wrong.

New Beginnings

Jacob was diagnosed as at least severe and probably profoundly deaf from his ABR. We never received an apology from our doctor, and he even gave us a hassle with the referrals. We switched doctors as soon as our referrals went through.

I bought every book I could find about deafness and parenting a deaf child. I was so confused. I was going to sign, then I was going to cue. I didn't know what to do.

Then I talked to some other parents. I went to some conferences, and I found out about the Cochlear Implant and the League for the Hard of Hearing in NYC. Jacob began therapy at the League and was fitted with a powerful FM/HA system. After more behavioral testing when Jacob was 8 - 9 months old, we realized he was getting little benefit from his hearing aids and we began evaluations to see if he was an implant candidate. This is a very important point. You need more than an ABR to figure out if a child is a cochlear implant candidate; behavioral testing and a hearing aid trial is an absolute must.

The League was a life saver for me. Not only did they take care of Jacob, but they counseled me as well. I also joined their parent support group. They told me all about the auditory/verbal, auditory /oral options, and I was able to see some older kids with implants and watched in amazement as they talked and listened. I knew this was the option for us. Our family spoke English, and even though we could learn American Sign Language (ASL) later, I wanted Jacob to have every opportunity to learn our language first. I felt (and still do) that because I was not fluent in ASL, his language skills would suffer. When he is a bit older, we will learn sign language together.

Jacob's Implant

Jacob was implanted with the Nucleus 24 Contour at 12 months of age. He was implanted at New York University, by Dr. J. Thomas Roland (who I can't say enough good things about). Dr. Roland was with us every step of the way, answering all of our questions with a patience you don't see much these days. He was activated a month later and is still mapped today at NYU's Cochlear Implant Center. They have so much experience with young children (as well as every other age), and really know what they're doing. We are very happy with the Nucleus device and are grateful that we chose it.

Progress

At the time of this writing Jacob is 21 months old. He is talking and listening. He comprehends almost any directive we give him, knows all the parts of his body, and has an expressive vocabulary of 25 words. We couldn't be happier with his progress or our choices so far. He is far exceeding our expectations.

Even though the League was a great resource, the drive into the city took over an hour and it became too tedious for Jacob as he got older. We now use a speech therapist closer to home, Lois K. Heyman, who is every bit as good with Jacob as the League. We also have a teacher of the deaf come to our home once a week to work with us.

Jacob is progressing very well because he was identified before 6 months of age. Early intervention is so important, I just can't stress that enough. I feel very lucky that we had an aunt that was willing to be uncomfortable and tell us what was on her mind (even though she knew she could be wrong), and I am so grateful for the time and place Jacob was born.

Jacob is a bright, funny and sweet little boy. He is happy and secure. He laughs easily and it comes from his heart. All we hope is for him to keep these qualities, and become a happy and secure adult. We truly believe, because of the technology offered today, and the advances in auditory-verbal/auditory oral therapy, that Jacob is not limited in any way. He can be whatever he hopes and dreams with no boundaries to stand in his way.

Updates 

23 months

Jacob is now speaking about 50 words, and uses his words in a very natural way. He is just beginning to explode with language, and we get new words from him weekly!

2 years 7 months

Jacob was tested over the summer and he is caught up to his hearing peers in both receptive and expressive language. He is still missing some consonants, but is catching up quickly. His listening skills are excellent and his speech sounds perfect (for a 2 1/2 year old)! He is starting a toddler program at a local pre-school this fall.

3 years 1 month

Jacob has been attending a toddler's program at a mainstream pre-school since September (it is now March). He is thriving. His teachers tell me they do not notice a difference between Jacob and the other children - he speaks just as clear and understands just as much. His speech therapist attends the nursery school with him once a week for one hour - and this has helped both Jacob's communication skills and the teachers' abilities to facilitate communication with Jacob.

Jacob was tested using the ski-hi standards, and he is testing 2 - 4 months above his age level. Jacob is a very happy, well adjusted boy. Jacob's newest thing to say to me is "stop talking I can't hear the t.v. !" or "stop talking on the telephone".  I would have never guessed three years ago when this all began that I would be so happy to hear those words!

5 ˝ years

Jacob just started kindergarten, and is doing great! His language skills are equal to those of his peers, and he loves kindergarten and is understanding everything. Now we’re working on “the potty mouth”, which I have to say I’m so happy how well he’s picking up incidental language! Jacob gets in as much trouble for using “potty words” as any other boy his age!

Now the tough part is for me to back off of him a bit… so that’s where we are!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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