Monday, September 21, 2009

Answer Me!

I know I've been MIA, but there has been some good news among the frantic chaos that is our life. We finally have two more pieces to add to the ever-changing puzzle that is Emerson Porter.


Emerson with post-nap hair


First, I had an illuminating meeting with his occupational therapist. At the end of last year she handed me a thick packet and instructed me to fill out Emerson's daily activities, along with any related problems. I have to tell you, detailing all my frustrations and struggles was one of the most cathartic experiences I've ever had!

When I handed the completed packet back to her a few days later, she thumbed through a few pages and said wryly, "You guys are having fun, aren't you?"

I snorted. "Yeah."

She promised to get back to me with suggestions, but between summer break and some family issues she was facing, I didn't hear anything until the end of August. In the meantime, the process of writing down all our problems had given me an idea to do a picture schedule. (I'll write a separate post about what that means later, along with posting some pictures.) But when the OT called me, her suggestion was...you guessed it...a picture schedule! For once I was actually an on-the-ball parent!

This was not the good news, however - that came when she offered to meet with me to see what I had done and offer advice. Unlike some of his other therapists, the OT is more blunt and straightforward, which I appreciate under the circumstances. One of the first things she said was, "Emerson is not an easy kid. I hope that makes you feel better."

I laughed, "Yes, it does!"

I appreciate it when people try to make me feel better by pointing out how cute and sweet and fun Emerson is, but it's also nice to have my frustrations validated once in a while. It's nice to hear someone say, "I get it. I get that some days you want to scream, pull your hair out, or take a Greyhound to Alaska so you can start your life over again as a truckstop waitress named Marge."

She offered me a wealth of advice, from picky eating issues to social situations to making his new-found interest in tv an asset rather than a guilty indulgence. Most importantly, she confirmed that his sensory issues are related to his poor vision and not a whole new diagnosis of sensory processing disorder. I also asked about autism since no one has given me a straight answer so far. Frankly it hasn't been a huge concern of mine lately, but I wanted to know her opinion since she is on the autism diagnostic team.

She was taken aback that I asked and that the other therapists hadn't told her I was concerned about this. (Had I known sooner that she was on the diagnostic team, I would have gone to her first!) She told me an unequivocal no - he does not have autism! FINALLY someone gave me a real answer, even if it was just eliminating one of many possibilities.

This meeting made me realize something else - I need to start bringing tape recorders to document these kinds of conversations. She told me a lot of information about why she doesn't believe he has autism, but I can't recount it now because I was too busy trying to appear as if I wasn't choking back tears. And it didn't matter because halfway through her speech she started wiping her eyes and saying, "You're making me cry too!"

I'm such a freakin' baby.

The second bit of good news (is anyone still out there reading this novella? Hello? Oh well.) I took Emerson to his speech evaluation at UM hospital. They only offered me one time - right in the middle of nap time of course - but I suppose it's better to show his worst side during an eval anyway. Despite not being at his best, the therapist did not think he has Apraxia, although she cautioned she can't rule it out until he can say more words so she hear how he pronounces them. She did diagnose him with a slight receptive language disorder (ability to understand language - he was actually within the normal range, but she wanted to give him that diagnosis so that she could include some receptive language goals) and definitely an expressive language disorder. She explained that they have to call it a disorder for medical billing purposes, but her sense was that it was actually a delay - meaning he will catch up in time. Yay!

She gave me some diagnosis codes and advice on how to deal with the insurance company, which helped me to finally get the answer I was hoping for. They do in fact cover that facility, so we are on the waiting list to start services. The evaluator told me the school early intervention would be enough therapy if insurance didn't cover the hospital, which was nice to know. But since it's covered, I want to make sure we get all the extra help we can! Now I just have to figure out how to negotiate that damned hospital parking lot on a weekly basis...(does anyone else think it's insane that hospitals now have valet parking? Even for patients?)

So that's all the news that's fit to ramble about at our house. The boys have hit several milestones this past week as well, but I'll write about that later. For now, here are some more random pics:

Life at our house includes a lot of wrestling.


Fionn prefaces his attacks with a shrill battle cry.




Can you see my joy at being an oasis of estrogen in a sea of testosterone?


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7 comments:

emnemily said...

I think the valet parking will be a good thing, considering you'll have to be there every week now. Just make sure to have a buck every time :)

I'm glad to hear that there was some good news! Keep on truckin along. They're adorable and will definitely catch up, considering their mom :)

Bri said...

Yay for new news!!
And in that first picture of Emerson, with his hair short, he looks so much like Robbie!
Oh, and before you get too lost into that Alaska dream, its just started snowing there today... and sticking, so think about that, lol.

Wendy said...

Cass, I'm so happy! Great news all around. And, babe, I'm right there with you on that catch-a-greyhound-to-Alaska thing sometimes. I wanna be Marge too. Having your frustrations validated must be such a wonderful thing...instead of constantly getting "what a great kid he is". (Yes, but you are only acquainted with Dr. Jekyll. You don't see him at home when Mr. Hyde comes out.)

Casey said...

I have felt the same way you have. When we kept trying to get help for Madison's behavioral problems no one seemed to get what we were going through but then we had someone come out and evaluate her and actually said "yes there is soemthign here this is not normal" typically you don't want to hear that type thing in regards to your child but to know that you aren't crazy and now you can find the tools to help your child is great.

Anyways, hopefully you remember me. I am cassandra also with 4 girls two of which have albinism.

Kelly said...

Great news!!!! I am SO happy to hear all of it. This OT sounds like just the person you've been looking for. Change and growth is such a process, and is often much longer than we'd like! And thanks for the tip regarding comments on Emerson's behavior. Next time we hang out, I'll be sure to let you know what a remarkable pain in the ass he is!!! (Totally kidding...)

jdg said...

I hear Alaskans are terrible tippers.

burgiboogie said...

He's so young there is still loads of time for him to develop! I am glad you are getting a "team" that knows what they are doing:) I love the Fion's warrior cry picture.