True Love

My amazing husband wrote a heart-felt post in regards to Jack...it also includes an update to his sleep study. I'm copying it here so everyone can read it. :)







I am not much of a writer, so forgive any mistakes & apologies for the length of the note. I wrote this today about Jack and what an amazing child & blessing he really is.

No, this entry is not about crazy times as in fast running. I've still been training, but have been sidelined somewhat by a nasty cold. I managed 14+ (short considering I was over 20 the weeks prior) miles last week with a chest cold that's now a nice sneeze etc. I'm at 7mi this week with my first ever Half Marathon on Sunday the 14th.

This post is more about the crazy times in our lives. I'm stepping back to write something different this time. Something that is always on my mind, and is often reflected upon on my "Long Run" days.

Our son Jack, born in July 2005 was diagnosed with Autism Spectrum Disorder by our school district back in August 2008. He received a medical diagnosis back in September 09' from Fraser in Minneapolis.

When you first hear someone say "Your Child has Autism", you really don't know what to think. You're taken back by it. Sure, we knew something with our son was "off" due to some missed milestones, slightly quirky behaviors etc, but we were not assuming anything or jumping to any conclusions. Initially, I'll admit, I was in denial. The feeling of "That's not true" was frequent.

Our Jack is a very special boy, and I love him dearly. There are plenty of moments that I get frustrated (I've struggled with anger/quick temper forever!), but in the end I will give everything for this little boy who struggles every day to communicate with us. Jack is very verbal as far as autism goes, and knows an amazing amount of words. His autism certainly doesn't effect his amount of talking. Jack is very smart, but has trouble communicating thoughts that are his own. Echolalia effects Jack. Defined as "The involuntary parrot-like repetition (echoing) of a word or phrase just spoken by another person", echolalia can make Jack appear quite normal to a lot of people that do not know him, or those that may not understand a lot about Autism. If you meet Jack, and say "Hi, how are you", he knows the correct answer to be "I'm fine" or "Good, how are you". It's a VERY Rare occasion that we'll get an answer that reflects how he is actually feeling. For all we know, he can say "I'm fine", but be reeling inside with anxiety from any number of situations. Most of Jack's responses to any question posed to him are canned, meaning that he'll think for a brief amount of time, then provide a response he's heard from either myself, his mom or someone else. If he doesn't know "the answer", he'll give you a sheepish grin, laugh, or sometimes make an odd noise, or even on occasion, he'll just say poopie.

Jack's memory, both audio and visual is astounding. Take for example, listing to a music CD. One of his favorites is "Church Music", by David Crowder Band. He has had his own little CD player that has since been destroyed by his recent destruction faze. We provided him this David Crowder CD as he really enjoys their music. Within a week of him having this CD in his CD player, he had memorized the track number of ALL 17 tracks on the CD by way of listening to the first 2-3 seconds of any song. Now, w/o ANY prompting, we can play the Church Music album on the iPhone in the car and within 3 seconds of the song starting, he'll say "That's number 10" or "That's number 6" etc. He knows every track on the CD and can give you the track number of them regardless of the ORDER they're played back.

Jack's hearing is amazing. So much so that we think he hears nearly everything going on around him, all at the same time. Imagine for a second that you're in Grand Central Terminal, NY. Thousands of people walking, talking, trains, escalators, cash registers, cell phones etc. Now, imagine hearing all of these sounds at the same time and trying to process them. This is what it's like for Jack. Trying to take all of that in, all at once and process it. It get's overwhelming and can lead to melt down city because he can't otherwise express how he feels in those situations. We're learning as parents that we need to carefully plan outings with Jack and make sure that we talk to him about where we're going, what will be going on there, if it'll be loud or not, if there will be a lot of people etc. Doing this ahead of time can make all the difference in our day. Sometimes, he'll still "lose it", but that may be because he's tired as well.

Jack is also VERY schedule driven. This is common with autism and he appears to fit right into that mold of having to know what's coming next, when, how long. It's a difficult task to plan your days as structured as Jack needs them. There's a fine line between planning every minute of his day, vs. trying to teach him that schedules can sometimes change, or things might be different and that it's OK. We're adapting, and so is Jack.

Another big area that Jack struggles with is transitioning from one thing to the next. Sure, any kid that has to stop playing with toys or stop doing something they're enjoying to do something else will not like it. With Autism, this can be magnified to an extreme in any transition no matter how big or small. Jack occasionally struggles with processing these transitions whether big or small. Sometimes it can be as simple as pulling the car into the garage and going inside. We'll pull in, open the doors, unbuckle him etc and he's simply not ready, or hasn't processed yet that it's time to come inside. We've left him in the car on several occasions and he's done well with coming in on his own after a few minutes.

We have some crazy months coming ahead of us; For about the last year to year and a half, Jack's sleep has gone really down hill. He is up and out of his room multiple times 99% of nights. Sometimes, it'll be just 2-3 times a night that he'll wake up and need us to put him back to sleep, but it can be as many as 10-12 times a night. Regardless of how many times, he is up for the day at or before 5am. We've tried consistently putting him to bed later, say after 8:30-9PM, but that doesn't change anything. He still wakes multiple times and is up and ready to go by 5am. We initially inquired about this with his pediatrician and received the "maybe he doesn't need that much sleep" speech. After a couple times of mentioning sleep issues, it was suggested that we try melatonin for him. Melatonin is an over the counter regulator of serotonin. This would help Jack fall asleep quickly, but even with doses over 3mg, he wouldn't sleep consistently, or any later than 5am. Finally after a year of asking about it, his doctor put in a referral for a "sleep study" at MayoClinic in Rochester, MN.

This sleep study just occurred overnight on 2.9.2k10. Getting any child hooked up to more than 30 EEG sensors would be difficult, but factor in Autism and it's that much tougher. The AMAZING part of getting hooked up was that Jack was a TROOPER. His anxiety was obviously elevated, but he did a great job of letting them put sensors/glue/tape all over his head, legs, face, chin etc. He's one tough dude! I probably would've pitched a bigger fit than he did. Only one of us was allowed to stay overnight with him, and Stephanie decided she would do it. She is so amazing with Jack. Patience, compassion, kindness...you name it, she's all over it.

The morning after his sleep study was the follow up with the sleep doctor(s). This was probably the hardest morning we've had..even more so than hearing "Your son has Autism". We met with the doctors and in the beginning it was seeming like everything was good. Jack's oxygen while sleeping was good, heart rate was great, sleep/wake cycles are fine. The answer we got about why he might not sleep that well wasn't what we were expecting. They believe it may be due in large part to an attachment issue & Jack being so anxious all the time. Jack has ALWAYS slept in his own crib, bed etc, but they think that due to his anxiety levels, he may hit a "wake cycle" and get worried that we're not here or something, so then he has to come downstairs, realize that we're there, get put back to bed, and go back to sleep for a another couple hours or so. Repeat this process until 5am and then it's time to get up for the day.

It's what came after that explanation that totally threw us off. The doctor explained that Jack has an exceptional amount of brain "misfires" while he is sleeping. This occurs on the left side of his brain and was very frequent while sleeping. Then, it hurt more..the word seizure came out of the doctors mouth. She said the type of activity he's having in his brain while sleeping is prone/related to seizures. She advised that while he didn't have a seizure during the sleep study, it's likely that he's had several seizures of a non-clinical variety..meaning that we may never see them happening, and that he isn't convulsing etc, but that there is something going on that needs addressed. Immediately, it clicked with me that we've probably witnessed our son having a seizure on several occasions. Jack has these periods of 30 seconds to 1 minute where no matter what we do, we can't get his attention. He'll just sort of sit there, starting off into space and nothing seems to rouse him from that. Then, all of a sudden we'll get his attention and he's back to his usual self. Seizure? Who knows...but we're determined to find out!

It was with that, we learned that within the next month, he'll be having an MRI of his brain focusing on seizure something or other, and for that he would need to be put to sleep because it can take about an hour for a child to go through the process, and he would NEVER lay that STILL for THAT LONG. He also has to have another EEG, but this time it'll be while he's awake, not sleeping. Hopefully he does just as well this time with getting all the sensors hooked up. Once those appointments are done, we'll meet with a neurologist to review results and go from there.

In the meantime, we moved Jack's bedroom back downstairs next to our room, and will be on our toes even more now watching for any signs that something is wrong.

All of these struggles and trials aside, he is one amazing child, and is truly a gift to us. Through his Preschool, speech and occupational therapy, we're learning a lot about who he is. We're learning to work with him, and help him communicate his needs and true feelings to us. It's a long road, but we wouldn't trade it for anything.