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?