Wednesday, September 29, 2010

Understanding stuff

I am currently reading Like Sound Through Water by Karen Foli. It's a story of a mother and her journey to discover her son has an auditory processing disorder. This book has been very difficult to read. It's very well written. But it hits home at every turn. When she speaks of her knowing something isn't right and being told by her husband that their son will be fine and will catch up eventually I felt that knife turn. When she speaks of the pain of reading that first test result where her son's testing is so very low and her agony and confusion. Gd I could have written a lot of this book.

So... it's slow going. I read, I get choked up and put it down. However, I have to get my ass in gear because it's a library book. Actually, I took out three books. All about various disorders that Dylan has been diagnosed with or is suspected of having. My Mom is giving me grief that I need to stop reading but I'm learning. As I learn, his behaviors make more sense. The more they make sense, the less stressed out I get over his actions. She doesn't get that though and that's okay.

Kindergarten is going well. I love his teacher and his therapists. They have been great with communicating with us and Dylan is really enjoying himself. I was a bit concerned with the after care but now I'm a little more relaxed. I've gotten to know the care givers and he's got himself a few girlfriends to play with (yes, they are about 8-10 years old). He's quite the Romeo my boy. His teenage years are going to be very interesting indeed!

Thursday, September 23, 2010

Show me the way to go home...

Dylan loves music in all it's forms. I've sung to him since he was a baby. The first song he ever "sang" was Rainbow Connection and then he just would pipe up with words at the right time. He loves to strum his guitar and sing songs, usually making up words when he can't remember the right ones (which we love) but he never sang WITH me. That was... until the other day. I was driving home, singing "show me the way to go home", you know, from the Jaws movie, when all of a sudden, he starts to sing WITH me. OMG it was so much fun! Then I realized... his first song that he sings correctly and with me... is a drinking song. Yeah, pass me the mother-of-the-year award. heheheh Now we sing together every night on the way home. I'm sitting at my desk at work thinking about what songs we can sing on the way home. I love that he loves music so much. He also loves shows. My MIL took him to his first live production. It was "If You Give A Mouse A Cookie". He loved it. Sat through it with very little fidgeting at all. At summer camp, his advocate loved the days when the older kids would put on a show. It was guaranteed that Dylan would enjoy seeing whatever production they put on.


That's what Dylan did at lunch yesterday. He spit into the food. I don't know if it was the food for everyone or just his own but ewwwww. I emailed his teacher this a.m. apologizing for his behavior, letting her know we addressed it at home (no punishment as he was given a time out at school) and asked her if she knew what may have caused him to do that. It's very out of character for him. He did it once before at day care and we know it was a frustration thing. Her response made me adore her even more. She said that she was thinking about it last night and thinks it was a sensory thing. He was pulling at his tongue before it happened and had licked the table ~insert confused face here~ prior to his spitting. She'll talk to his OT today to make sure that he's getting the appropriate amount of oral stimulation he needs. I have been told, by a few parents, that it gets harder as the kids get older to get the right services for children with special needs. All I know is what I have now and let me tell you, it rocks my world.

Thursday, September 16, 2010


Last week, we had our final testing at the audiologist's office. Dylan's behavior therapist, Mr. D., feels that contrary to what his developmental pediatrician thinks, we are looking at a central auditory processing disorder (CAPD) vs. your run-of-the-mill ADHD. We found an audiologist who would see us since most won't touch a kid for CAPD until they are at least 7 (not mature enough to handle the testing which requires they sit for long periods of time and attend to tasks). Well, this audiologist (top in her field) does the testing in small bits so she was able to fully test him over 3 visits and the outcome was.... he has CAPD. Challenge is, she really can't give him that diagnosis for at least a year and be taken seriously but we know and we can now work towards helping him. Except, nothing really helps. That's what Mr. D told us. Mr. D, in addition to being a therapist, also has a child with CAPD. He's done it all. He's tried it all. He said we basically need to stay on him to keep trying and keep working his butt off in school. It's going to get harder because he's not going to want to always work hard so it's our job to keep him on task. David used the "d" word last night. As in "your son is disabled". I am really struggling with this. I mean look at him, he's strong, he's healthy, he's smart. How can you call this child disabled. But he is. I know that but it's killing me.

Tuesday, September 14, 2010

It's been a while

Is anyone still out there? Sorry it's taken me a year to write but damn life has been busy. I read back over last year's posts and laughed when I read in February 2009 I posted that Dylan had "a bit of a speech delay". Turns out it wasn't that simple. He has a severe speech delay. He also has dyxpraxia, sensory processing disorder, central auditory processing disorder, static encephalopathy, and possibly ADHD (you don't need me to post a link to that one do you?). I have spent a good chunk of my free time reading up on each of these disorders to ensure that we are doing everything we can to ensure that Dylan will have a productive school and home life. I've found the more I understand these delays, the more I understand his behavior. Also, seeing a behavioral therapist helps tremendously (anyone in NJ who needs a recommendation - let me know). I have also taken up sewing. I made Dylan a quilt ~insert puffed chest~ and am in the planning stages of making one for my Mom and Sister. We are financially strapped so buying the material is just going to have to wait. Between paying for Dylan's day care the past few years and the private therapy, let's just say that McDonald's is gourmet night out. Blech. We are on the right path though, we are working with a financial guy to get our bills down. Hopefully, we'll see some light at the end of this tunnel in the next few years. So.... how are you???