Thursday, October 1, 2009

Speech Evaluation

Today we had Harlie's speech evaluation with her speech therapist. It was more of a formality than anything else, as clearly her speech therapist knows that Harlie needs and qualifies for private speech therapy. But, we have to go through the required process since she's three now and not in early intervention anymore. So, basically we're starting anew through our insurance than through the county.

However, Harlie was not cooperative, so it became much more than just a formality. A therapist came in with Michele (her speech therapist) to "test" or evaluate her. She asked her to do some basic things, like "Harlie, show me your shoes." Which she wouldn't do. Although she clearly knows what shoes are. Then she asked her to follow basic commands with blocks (like put them in the box, take them out of the box). Even that wasn't easy to get her to do. Then she showed her a flip chart with pictures on it. And she asked her "which boy is eating?", "which dog is the biggest dog?" and things like that.

The therapist who was testing her asked our therapist if Harlie's behavior could have been because Harlie was unfamiliar with her. So, Michele asked her some questions. This time she asked her while signing at the same time. And that helped a little. But the questions got more difficult. Like, there were five or six pictures on the page of various things (shoes, flowers, etc.) and the question was "what do you watch?" and the answer would be the TV. Well, she signed that question, and Harlie got it right. But, then she showed her a picture of a dog chasing a car and asked her "where is the dog's tail?" Well, she didn't get that one right. Or the next several ones.

She did terrible. It was hard to tell if she honestly didn't know or if she just didn't care. It really was terrible. And I hate the way that seeing her "test" like that makes me feel. I've always heard how smart Harlie is. And I've always believed that as well. So, to see her act the way she did was shocking. And I wasn't the only one who felt that way.

About halfway through the eval, Michele asked me about Harlie's past hearing tests. Here's the summary:

She passed a newborn hearing test shortly after her birth - in her right ear only. She has no canal on her left, thus no hearing on her left is possible at this time (and we don't know what's going on inside her ear, so potential for hearing in the future is unknown).

She had many ear infections on her right, so she had a tube inserted a long time ago.

Last summer (2008) she had an ABR (auditory brainstem response) test. It's performed when the patient is sedated and they look at brain wave activity. Well, the results of that ABR were not good. They said she had moderate hearing loss on the right side and complete on the left. I was shocked (about the right side, not the left) and didn't believe it to tell you the truth. And then the audiologist said that if she had an ear infection or something that could affect the results. Oh, and she didn't look in her ear, either, so there you go. I was not impressed.

About a month or so later, she was seen by her ENT (at a different facility than where she had the ABR test done). And her ENT said that her ear tube had come out of her ear drum and was stuck in her canal with wax and a granuloma had started to grow around it!!! So her canal was completely blocked.

Well, that explained the bad results from the ABR. So, her ENT removed the blockage, and the granuloma and after it healed, he put in another tube. And I went back to thinking that her hearing was just fine on her right side.

However, today It was pretty obvious that she was displaying signs that hearing was an issue.

Michele said that Harlie is so smart that maybe she's been getting by using other ways to figure things out - other than hearing, I mean. And she does understand sign language when she looks at you. And the results of this evaluation today made me really look at things in a new light. I think she hears the phone ringing. But then when we got home today, she didn't look when the phone rang. It could be that she doesn't care because she's not going to answer it, or talk on it. But I know that I've seen her look at her monitor when it beeps.

Michele also asked her, "Which boy is taking a bath?" Harlie saw her sign bath and immediately pointed at the right picture. She also asked her "Which boy is running?" She didn't get that one right. But, she doesn't run herself. Could that have affected if she knows what it is? Have I ever made a point to teach her what running is? Am I supposed to? I didn't have to "teach" Murphy that. I bet I'm going to over-think this.

I've just always thought she was ignoring me. But, now looking back, if she doesn't hear well, that might explain some things. In preschool, she hasn't wanted to participate in circle time. If they are talking about the day, or reading a book, and she can't hear them very well, of course she's not going to be interested.

And if I'm scolding her for something, or trying to get her to do something she doesn't want to do, she will NOT look at me to avoid my signing. It is VERY frustrating. And Michele said that children who can't hear will purposefully avoid watching signs. Which leads us to a behavior problem that I have NO idea how to address.

However, to a child with language problems, asking them a question can be very stressful. It's just not the same as asking a typically developing child a question. Language does not come easy to them. Tonight for example... I told Harlie to pick a book and I would read it. She brought me one and I asked her (while signing) "Do you want me to read this book?" I want her to nod her head or sign yes. She won't do it. She doesn't respond at all. Could it be that she doesn't understand she's supposed to answer? When I ask her if she needs to go potty, she'll shake her head no. So, I think she understands a question. Could it be that she's thinking, "um, yes mommy, duh, you told me to pick a book and you would read it." What is going on in that mind of hers?!?!?!

The bottom line is that she needs to be tested soon. Very soon. We need to properly address whatever is going on. I also need to contact her ENT and see if he can look in her ear to see if there's a blockage. That is my hope.

Overall, today was a difficult day. It is very hard to see your child not answer questions correctly. And basic stuff that she should know. And it is very scary to think that this is another thing that we have to address now. Which means more appointments, more tests, more results, more learning and possibly more action. And I can't help but think that it's my fault that she doesn't know more. Should I have done more? Done something differently? But how? Seriously! How can/could I do more?? And it's so overwhelming. And hard. So, so hard to have a child with so many challenges. Indescribably hard. Murphy and Cooper just do things naturally. And the learning just happens. I don't have to think about it. I don't have to ask professionals for help and advice all the time.

I was thinking today that everything I feel is in extreme - nothing is middle of the road. I feel happiness to an extreme. Or I feel devastation (heart broken even) to an extreme. It's an exhausting way to experience life. And today wore me out. I'll pick myself back up tomorrow. Don't worry.



Janis said...

Oh boy! I know you had mentioned before the ABR was inconclusive, but I had no idea why. It is amazing that she could have gotten so far (3 years) without it being detected sooner, but you (and she) have so much going on that I can see how it got mixed up in everything.

Tell me if it is none of my business...but why doesn't she have a BAHA for her left side atresia? I know some Drs don't push it. But I think it would REALLY help her, no matter what the right side shows. I know lots of people with unilateral atresia who benefit from BAHAs. Ask your Audiologist. I would say "insist" but I don't wanna be a total buttinski. ((HUGS)) Please feel free to ask me anything about the BAHA or hearing stuff.

jennifer said...

One day at a time...You did not get where you are now overnight. Tommorrow will be a better day. Hang in there. See you in a few hours ;-). Need a girls night?

Unknown said...

I am so sorry. I hate that fear/devastation feeling.


B-Mama said...

Hugs to you from down the street. Harlie is as gifted as she is because of all you and Tom have advocated for her. She's also a smart little girl--I knew that within minutes of meeting her--she is so capable despite her disabilities.

I admire you for your steadfastness through adversity. Hang in there! Know of our prayers and support.

Rene said...

Just wanted to thank you for the smile you brought to my face. I bet you're wondering what's WRONG with that woman??? It made me think back to all of Tommy's OT and PT evaluations. We would watch him stack, string, color, and cooperate for weeks, but the day of the eval, when the numbers were being crunched, he balked. Every. Single. Time! He'd toss the blocks under the couch, turn his back on the therapist, and scowl.

It was exhausting, frustrating and now that I am able to look back on it, completely hilarious! It was his way of letting us know he was the boss.

I hope whatever is going on with Harlie is mostly her way of keeping everyone on their toes. Praying she just has another blockage that is easily fixed and that her hearing is intact.

Susan said...

Our girls are the same age and we just went through those same tests. I know all those feelings all too well. Being surprised at their "performance" both good and bad. I too recognized during the test how much more I could be doing to teach the concepts they test. But also isn't that the speech therapists job to identify the areas our kids need to work on? I guess that's why they do the testing. And you revise your IEP accordingly. I too feel like my plate is already so full I could puke. The speech therapy could go on all day long. But you have to have a life too. Remember you are doing awesome! And she is doing awesome! Remember how far you've come and all you've been through. Perfect is impossible.

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