Sunday, April 05, 2009

Bring on the tests.

I need to start taking more pictures because I just combed through my files to find something for this post and came up dry. What's up with that?

We've been busy! I took Ethan to his developmental specialist recently and we covered a lot of ground. We discussed his sleep disturbances and she ordered a sleep study and prescribed medication to help him sleep. The problem has been there since birth but lately I've had a few nights that have pushed my sanity to the brink. My dear friend Adele just pointed out to me that I've totally lost perspective on his sleep trouble. I've lived with it for so long that it has completely distorted my notion of what a good night's sleep should look like. For instance, I'll mention that I've had several "good nights" lately and that simply isn't accurate. What it means is that Ethan slept next to me kicking me all night and only woke up 3 times! That has become a good night for me!  

That visit was 5 days ago and Ethan has slept all night long by himself in his own bed for the past 4 nights with no medication. It's a little thing we like to call "Dad Magic". We know that his problems have been a combination of medical and behavioral factors, but it's never clear what we're up against with him since we have such a communication barrier. Either the past few nights have been a total fluke, or we're turning a corner. I haven't filled the prescription yet and don't plan to until we feel like we're free falling again. I don't have high hopes, but I see a light at the end of the tunnel for the first time in his life. 

His developmental specialist is really on the ball. She mentioned the possibility of apraxia about a full year before it was truly evident enough to diagnose. She is now suggesting that we begin the process of assessing Ethan for autism spectrum disorder. We have been watching his behaviors and for so long he's shared a great deal in common with kids on the spectrum. We felt that most of it was likely due to cmv, but there is a chance that he could also be autistic. The main areas of concern are his lack of social engagement with peers, imaginative/creative play, and functional language development. There's no doubt that he is very smart and has tons of potential, but it seems like it's all flowing in and is stuck trying to get out.

Rich and I are hanging tough. We don't have any definitive diagnosis and if we do end up going down that path it will help us direct more targeted services for him. There are techniques such as applied behavior analysis and social stories that are part of the treatment for some autistic children and these could really help jump-start his language development and improve his behavior/alleviate his frustration. 

We also had an audiology appointment recently that freaked us all out. Ethan has always been very well behaved during those appointments and has allowed the audiologist to do whatever she needs to do with his implants. Not this time! He was extremely combative and hysterical the moment she took his implants off. He could not believe we wouldn't let him wear them. The behavior deteriorated when we tried to put it back on him to do the actual testing with the computer. She wasn't able to get any data or do any programming on either ear after 2 hours of pulling every distraction from the book. It was nuts. I've never seen him so upset. 

We're told that this is absolutely a normal phase of development with Ci kids. They become really bonded to their hearing and have a very hard time when they are unable to use their Ci. The professionals find this to be a positive step forward for him but as a parent it's fairly upsetting. I want him to be happy whether he is hearing or deaf and there will be times in his life that he will have to be deaf. The only thing that makes me feel good about this is the fact that it's likely just a phase. 

That's what it's all about though, this parenting gig. It's just a series of phases. I don't imagine that it gets any easier does it? 

18 comments:

Kyla said...

I don't know if you remember, but a little less than a year ago when K was tested to be placed in the district, she had a lot of commonalities with kiddos on the spectrum. She had an autism eval as well and the result at the time was "Maybe, but we don't feel confident labeling her yet." Since then she's really blown that out of the water. K and E have been pretty similar so I'm wondering if he might do the same.

All of our audiologist visits are an exercise in combat. Out of all of the tests and appointments KayTar has, those are the ones that make me feel most frazzled. Now we have to do ABRs under anesthesia, because it is the only way to get a proper result from her. Ugh.

Hetha said...

I remember it well Kyla. Time surely flies. I don't think he's autistic, but I do recognize those things in him that are considered to be on the spectrum. I think the testing could help us get more specific about how to help him move forward and I'm all for that. He and Kaytar do have so much in common and her progress in the last year has given me much inspiration!

KC said...

Oh, ethan and the implants...he loves the hearing. Well, he's definitely gotten used to them! The phases - it's so easy to get hung up on the rough parts, at least for me. Jolie has been having a really rough sleeping/behavior spell and it's too easy for me to focus on that and not all the other things going on.

I feel like I'm losing my patience at night but I also don't want to only remember this part when I look back at this time. It will pass, right?

Anonymous said...

Sending love- Misha

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Aliki2006 said...

I'm sorry about your struggles--especially in the sleep department. I know exactly what you mean about losing perspective on sleep. We have our daughter, who sleep so well, to compare L. to and it's obvious every day that he's got some real issues with sleep (which he's had since he was an infant).

I'm glad you're in a good patch with sleep--I hope it continues!

Jimmy Legs said...

if it's any consolation, my girlfriend kicks me in her sleep. and talks in her sleep. and hogs the blankets. don't tell her i told you!

Beck said...

That sounds really difficult - going without sleep is a hard thing for me to manage, so I really admire you guys.
Praying that the testing leads to some answers that are actually HELPFUL.

Cheryl said...

Melanie, as you know is bi polar but the PDD-NOS diagnosis depending on the doctor. The doctor here said to me, "I have an autistic son and I have worked with Autistic kids for 20 years,she is not on the spectrum." At this poing, I just get so frustrated with doctors and their diagnosises.

Ethan is so young still and he missed a lot of language growing up. I still say wait for that little guy to grow up and let HIM show you what he can do. The catch is, of course is the labels get the services. It is good to be aware, but no one can really predict what a child is capable of as he matures. I have seen it time and time again in school. The most important thing is the teacher/child fit. That is nothing you don't alreadu know!!!!

Interesting about the audiologist test, but it makes sense. Hope the next appointment, they can get better (any) data.

Would love to see more picture of the E-Boy. His eyes and smile always make my day.
XXXXXXXX

Cheryl said...

Happy Easter to you all!

Here It Comes said...

First, Emmi just went through (and thankfully is coming out of) a phase were she refused to sit for the programming. She would not allow them to hook up to the computer. She thrashed around. She was combative. The last appointment, she was back to her old self, handing her audiologist her processors, allowing the programming. I was assured it was a phase, and it surely seemed to be.

Second, my oldest child is taking medication. She went through several years of not sleeping for more than twenty minutes at a time. Since taking medication, she is sleeping through the night every night. Her other issues (headaches and behavior) have dissapeared. But, the best part? I get to sleep again!

I hope the testing helps get some answers. Does it feel like we are all sitting around waiting on answers?! Will it ever end?

She said...

I know that all must be so tough, the whole parenting gig is one I don't know, but I imagine it's filled with equal amounts of joy and frustration.

You are an amazing mom! It comes right through the screen that you are!

And that boy, well, he's the cutest thing EVER! (And I'm an expert on cuteness!)

leah said...

My goodness, I hope you get some help with the sleep issues. I would be absolutely useless with so little sleep! I'm sure they'll find something that works for all of you. I also hope that all the evaluations come out well, and if he is diagnosed on the spectrum then he can get more services to help bring out his abilities.

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