No Words

Here is Elizabeth with her speech therapist, Jan. Elizabeth is thrilled with her--and with the bag of toys she brings with her. I liked Jan the minute I saw her.




Well I did manage to post a few photos last week...but those posts seemed to belie all of the drama unfolding around here.

As I mentioned in a prior post, we have been concerned about Elizabeth's language acquisition . She started speech and language therapy about a month ago and it was sheer luck that we got the speech therapist that we did.

I have always wondered if her hearing was part of the speech problem and we had her hearing evaluated by specialists earlier this year. She passed their tests and they said her hearing was,quote, "great".

I still had my serious doubts but heck ,when everyone including the doctors are telling you that your daughter can hear and that you should stop being a 'Jewish mother" , you really want to believe them. So I did.

Stupidly.

But I knew something wasn't right. Elizabeth learned certain things like the colors and she could count to ten, and various things that showed she was functioning well cognitively.

But she just wasn't picking up things as she should have been. And as Marty would tell everyone, "she just doesn't understand a lot of things that other kids her age understand.

Jan the speech therapist, then said to me, "Mary I don't usually go into my personal life, but I can tell you that my daughter is hearing impaired and she was misdiagnosed for over a year...and you are telling me so many things that I told people when she was Elizabeth's age."

She told us that her daughter had passed THREE hearing tests, because at this young age they test hearing with visual cues and if the child is clever they can pretty much pick up what they are supposed to do. She then gave us some small hearing tests to do with Elizabeth at home. She failed every one of them.

We also learned that the only way to truly test a toddler's hearing is to do an ABR (auditory brainstem response ) test while they are sleeping. This test allows for the testing of the child's hearing as well as differentiates between brain related hearing loss and ear related hearing loss.

Needless to say we did everything humanly possible to get Elizabeth this test ASAP. We had the test done on last Thursday and to make a long story much shorter, the good news is that Elizabeth does not have an auditory processing disorder--but the bad news is that she does have a significant hearing loss.

It is not good news. But we are also aware that the news could be much worse...and for that we are grateful.

I think since the day we had the diagnosis confirmed I have been wavering in and out of various stages of grief to some degree. At first I think there was some shock and denial (even though I had been thinking she had a hearing loss for some time) and then there has been a lot of guilt.

For a year I sensed her hearing wasn't quite right--and think deep inside I knew there was a problem--regardless of what everyone else told me. And then when the hearing test which confirmed her hearing was fine. And, even though I still doubted it--I accepted the test results. Of course I wanted to believe they were correct.

Friends and family have been kind to say that Elizabeth is lucky to have us as parents because we love her so much and take such good care of her. But the truth is I feel as if I have failed her in this case. I truly am angry with myself for not pushing through and demanding that she get more tests. I assume you will tell me that I should stop beating myself up--but the audiologist who confirmed her hearing loss had it right when she said, "I can tell you not to feel guilty but I am a mother too and I know whatever I say, you are still going to feel as if you could have done more." She is right and that is something I will just have to live with.

In the meantime as you can imagine, we are doing everything we can to make sure Elizabeth gets the best care and intervention possible... She has a long road ahead of her to catch up. Most of our brain development as it relates to language occurs before three years of age--and she has missed out on a very significant portion of that.

I have more information on the details of her hearing loss but I will do that another time. And the truth is that there is still a lot we have to learn about all of this. One thing I can tell you is that her hearing loss is estimated to be "moderate" and I am thinking and hoping that it is on the low end of moderate.

Elizabeth has an appt. with the ENT doctor on Tuesday and then likely sometime next week she will be fitted with hearing aids. All of the doctors have said that she will "catch up". It may take her a year or two but we will do all we can.

Interestingly, it was a week ago Friday that we determined Elizabeth had a hearing loss, and on Saturday I found myself watching Ted Kennedy's funeral--which you would think had no relation to Elizabeth's hearing loss. But for me it did. I heard Kennedy's son Teddy Jr. speak about losing his leg to cancer in the winter of his 12th year. During the first snowstorm that year his dad took out the snow sled and said to Teddy Jr, "let's go sledding". Teddy Jr. was hesitant but went ahead--he fell badly after the first try and cried that he couldn't do it and would never be able to do it because of his leg. His dad said, "you CAN do it and I don't care if we have to stay on this hill all day--you are going to sled down this hill. Teddy Jr. cried as he recounted " I did sled down that hill that day" and for him that was a powerful lesson that colored the rest of his life.

And...that was a powerful lesson for me and one that even further strengthened my resolve to help Elizabeth not feel hindered by her hearing impairment.

And on a lighter note...we are going to have large posters made up that say, "When life gives you lemons, make lemonade".

In the end we are so blessed and so lucky and we know that. And as my brother said, "she doesn't realize that she has these issues". and if you look at her, it is true-- she is as happy as a lark. (knock on wood).

And on a yet lighter note...I think we are in for quite a ride when Elizabeth really gets going with her speech. Right now she has a large vocabulary of single words--although not too many that she puts together. And she is fascinated with a few words which she repeats quite often. One of those words is "animal".

So, today while we were in line at a local cafe, there was a VERY and I mean VERY large man in front of us. She decided she was going to practice her words and starting pointing at him yelling, "Animal, Animal.". Did I want to hide under a rock? Oh yeah. I simply said, "oh she calls everyone Animal". But that didn't seem to help the problem and only caused her to go into the mantra, "animal, animal, animal.'

"Kids say the darn'dst things"

And yes we are looking forward to all of those things.