"Anyone can have one kid. But going from one kid to two is like going from owning a dog to running a zoo." - P. J. O'Rourke

Thursday, March 18, 2010

Raelea Graduates!

Tomorrow Raelea graduates from her speech class!

This has got me thinking about Raelea's journey and our journey as a family. In order not to forget, I need to write down where Raelea has been and how far she has come. This may get to be long, don't feel obligated to read it, it's primarily as a record for myself and for Raelea. If you do decide to read through to the end, I believe you will be encouraged by what an amazing and kind God we have, who holds our lives in his hands and faithfully carries us through all of our doubts and trials.

Raelea wasn't talking at two. Not unusual, in and of itself, but it was more than that. Not only wasn't she talking, she was hardly making any sounds at all. The pediatrician said to wait until she was 2 1/2 and see how she was doing then. My heart told me that something wasn't right. It's not like she was my first child and I was an over-worried parent. I knew she wouldn't be talking at 2 1/2 either. I mentioned Raelea's speech delays to a friend and she told me that it sounded like apraxia. I had never even heard of apraxia, but after my friend mentioned it I did a little research. One defining characteristic of apraxic children is that they cannot mimic sounds - you know how you usually say ba-ba-ba to a young child and they will say ba-ba-ba back to you. Apraxic children can't do that. So, I decided to do a little test and see if Raelea could mimic simple sounds - she could not.

It was then that I decided not to wait until she turned 2 1/2 to get her tested. Everything that I read said that the sooner an apraxic child begins intensive therapy, the better the prognosis is. Initially we contacted our school district and had her evaluated by a speech pathologist and then we brought her to a private speech pathologist. Both therapists came to the same conclusion. Although they will not officially diagnose a child under three with apraxia, they both were quite certain that Raelea was severely apraxic. Not only wasn't Raelea speaking, she was was making fewer than five SOUNDS. The only word she would say was "ma" and she would use it for pretty much anything she wanted to communicate.

She could not stick out her tongue, spit or kiss. She also could not mimic simple physical actions (sometimes apraxia affects motor skills as well as speech). Her receptive language skills were normal (she understood things at an age appropriate level), but her expressive language skills were nowhere near where they should be for her age. Here is a great analogy of what apraxia is
One of the best non-technical descriptions of apraxia is comparing the act of speaking to cable television. In order for you to be able to watch a cable television show, the television must work correctly, the show must be broadcasting correctly from the station and the signals transmitting the show must be working correctly. For a child with apraxia, the mouth does not have any physical defects (the television) and the brain knows what the child wants to say (the cable station), but the signal connecting the mouth and the brain is not working correctly. The child is unable to correctly send the message from the brain to the mouth and form the words that they want to say.
Read more: http://www.brighthub.com/education/special/articles/15651.aspx#ixzz0iaUGHJBm

Most kids with apraxia do eventually learn to speak, but not all do. Because of the severity of Raelea's case her therapists were not certain that oral communication would be something that was achievable for Raelea - at least not for a long, long time. Although this diagnosis is not the worst thing we could have heard, it was hard to hear nonetheless. I longed so much to hear Raelea say, "I love you" or to tell me what she was thinking and at that time we didn't know if that would happen ever.

Often, when apraxic children try to talk they don't get the feedback and encouragement for their efforts, so they just give up trying and become silent. That is where Raelea was. After being diagnosed she began speech therapy four days a week. The initial goal was to just get her to make sounds. Any noise whatsoever. We would pour on the encouragement whenever she made any attempt to communicate. We would send her to "tell" her siblings it was time to eat. She would find them, make some totally unintelligible sound and they would all say, "oh it's time to eat?" and off they would go to the table. As soon as she realized that she "was communicating" she began making more efforts at "talking." Pretty soon she was "praying" as well :-) and although we hadn't the faintest idea of what she was saying I am certain that God heard and understood every one of her prayers.

While all this was going on, we were feeling lead by God to adopt a sibling group from Ethiopia. We were concerned, however about how that would affect Raelea's speech progress. The new kids would require a lot of attention and time and Raelea needed a lot of attention and time. Just trying to figure out what she needed or wanted required intense attention on my part. Would adding two new kids in the midst of all this be detrimental to her speaking? There was no way of knowing. We just prayed and prayed and prayed and still felt lead to adopt, so we went ahead and did that, trusting that God knew what He was doing.

Shortly after Zoe & Marcus joined our family Raelea's speech took a HUGE jump. One day she just started speaking more clearly - not perfectly, by any stretch of the imagination, but at least somewhat understandably. Her therapists were at a loss for what had happened - they could not explain why she suddenly could say things that she hadn't been able to just a few weeks prior. I knew what had happened. God had confirmed to us that He would take care of Raelea. That adding Marcus & Zoe to our family at that time was not a mistake and that Raelea would not suffer as a result of it, she would thrive!

From that point on Raelea's speech just took off. Soon she was talking in sentences. At first she was very hard to understand. It was painful to watch other children shun her because they could not understand her. It was painful to have well-meaning adults assume that she was lacking in some way intellectually because she could not speak. We just held on to the fact that she was progressing and rejoiced that we could now understand her about 50% of the time.

I have to say that through it all, I don't remember Raelea once getting impatient with not being understood. She would repeat herself and repeat herself over and over again. She would have to come up with new ways to get her message across and sometimes nothing worked. She just wouldn't get what she wanted because no matter how hard she tried, we just couldn't get it. Not once, never, did she pitch a fit or get frustrated. God gave her the perfect personality to go with her disability :-)

Now, three years after she was diagnosed, Raelea is graduating from her speech class. Her expressive language is in the normal range for her age (and, boy, does she have a lot to express). She is still not saying all the sounds she should be able too and she still needs to think about "how" to say things. She may always have to do that. She can't answer questions quickly. She may deal with that her whole life. That's okay. She is an amazing little girl. When she stands up in church and recites a verse, I cry. I know what an amazing thing that is! My little girl who could not talk - at all - just three years ago, can memorize and recite Matthew 5:3-25. It's a miracle. It truly is.

I've learned a few things these last few years from Raelea -
- I've learned how to listen. To really listen. To stop everything I'm doing and give her my full attention. It was the only way to understand her for so long.

- I've learned how wonderful it is to hear what your children are thinking. Even when they talk incessantly - praise the Lord, they are talking!

- I've learned how hard it is to learn to talk when you can't just pick it up the "normal" way. I've learned where your lips and tongue have to be for all the sounds. Air flow. Approximations and substitutions. I've learned more about speech than I ever knew there was to be learned.

- I've learned a new appreciation for parents and kids who have to face much more challenging disabilities than we have faced.

- I learned to rejoice that my child can now spit! This is a good thing!

- I've learned that we have a very good God who will look out for me and for my kids!

So, Raelea, as you graduate from your speech classes, I want you to know how very proud we are of you. You have worked so hard and you continue to work hard. God has been very good to you and we love you very much!

4 comments:

  1. Good brief and this enter helped me alot in my college assignement. Gratefulness you on your information.

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  2. I'm wondering if you've read "Trumpet of the Swan" to her? I'm reading it to Nora right now. It's fascinating to be inside the head of Louis as he comes to grips with the fact that he's different.

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  3. Ken, we've read it a few times as a family, but I don't think we've read it since she's been old enough to understand. That might have to be our next read aloud :-)

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  4. It is such wonderful story and it was very good of you to tell it now so tht we never forget what Raelea went through. You, Chris and the kids were such a help to her. God bless you all. Mom

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