The Best Decision for Brycen: Beginning the Gluten Free Journey

Wow, it's already May!  The kids have less than 3 weeks left of school and then we will have a 2nd grader & a kindergartner!  I know we've been MIA the last few months (Ok, so it's more like the last 7-8 months!), but life has really just been moving along fine.  Brycen has stayed stable in so many areas or progressed further than we could imagine in some.  Unfortunately, recent behavior has pushed us into make some more decisions about what is best for him.  Not that decisions aren't made daily/weekly about his services, medical appointments, schooling, etc...but this is more of a decision that will affect a lot of his life.

I'm going to back up a bit & give you some background on what has been happening.  Brycen has always been aggressive as most of you know, but it has mostly been in the home environment or maybe with his teachers.  A few months ago, Brycen began showing aggression towards his peers at school.  It was a very emotional time as I worry he is going to not only hurt someone, but jeopardize the relationships he seems to finally be making with his peers.  If they see him as wanting to hurt them, they may not want to be around him as much or be as understanding of the differences in his behavior like they have been before.

The hitting started very minimal with peers and seemed to be focused on a few little girls that Brycen seems to really like.  Sometimes it would be at their lockers or outside at recess he would push someone.  Even more tools were put into place to help him with his communication as we understood this seemed to be the reason for his aggression & wanting to get their attention.  As the weeks went on, the aggression worsened and seemed to be for no reason, not even when he was angry, as well as increased when he was angry and trying to escape from doing something/expectations with his teacher/associates.  Some days/weeks were better than others, but it really came to a head this last week.  At his recent IEP last month, we implemented a new behavioral plan with a positive reinforcement system.  Every time he would hit or show sign of aggression, he received a ticket for his pouch hooked to his belt loop.  He also has a "break" card and a "I have something to say" card attached.  He always has his "talker" with him, as well as some extra communication magnets on his locker if needed when he was there.  His behavior was tracked over weeks and when he didn't show the aggression while the AEA specialist was there, they actually tried to irritate him by changing his schedule, etc to bring out the behavior to observe the whole situation.  Some days this didn't even work, other days he was very aggressive.

After hitting 8 times before noon on Wednesday, and 15 times before noon on Thursday, it was obvious something more was going on.  We decided even though doctors in the past have said Brycen has no signs of gut issues and that GF/CF diet was not recommended at that time, we decided after seeing many parents report decrease in aggression after following the diet, it was the next necessary step for Brycen.

So just like I am with everything I put my mind to, I threw myself into the new decision fully!  I immediately talked to the teachers/associates, checked out books, asked for opinions/feedback from my ASD mommy friends, went shopping & armed myself with as much as I could in just a few hours.  I decided we needed to start immediately with GF at home, and slowly work it out of his school environment.  If GF by itself does not show an improvement in a couple months, we will look at adding CF to it.

The bad news is our checkbook is taking a hit while we stockpile the necessary things to get started on this diet (right now, it will only be Brycen on it, not all 4 of us), the great news is Brycen is responding well to the change & eating everything we have given him.  He has his own shelf now of foods to choose from, as well as his own meats/breads in the freezer.  It will be a challenge as we move into the next area of how he will be able to eat-out & not jeopardize his GF diet, as well as visiting other's people's houses or birthday parties, but we will figure it out. We really have no choice but to try this for Brycen!  We want what is best for him & will do what we can within our means to do so.

We will be using the blog as a way to track behavior over the next weeks/months, and hoping we will see an improvement soon!  Thanks for following his journey!

My Heart Hurts

My heart hurts when I see him like this.  But my heart hurts even more when he tells me to "go" when I want to hold him and try to soothe him as he falls asleep.

I haven't blogged in so long besides little statuses here & there on the facebook page because life was just going on.  There have been fabulous moments and not-so-fabulous moments over the months, but life was just moving along just fine.  We had a rhythm, conquered the holidays, school was going good minus the excessive aggression we saw for a few days, he was learning & progressing in so many areas.  But today, I felt compelled to the blog out of hurt & guilt.

Last Monday Brycen was hurting so I took him to the doctor which resulted in an ear infection as I had suspected.  He seemed to be feeling better and then he spiked a little fever yesterday and just started acting "off."  In Brycen it's hard to tell since if we ask him if he hurts, he typically will either point to a place he had an owie last or tell us "no."  We really have to read the physical signs and with him that means he stops stimming or playing with his usual toys.  

Another sign is he doesn't want me to hold him or be near him.  That might be one of the worst heartaches a mother feels.  When Aubree is hurting she wants us to hold her, rock her, lay next to her in bed.  Brycen just yells at me when I try to touch him or sit/lay next to him.  He's currently laying in our bed and has been for about an hour.  I heard him moaning and starting to cry again so I went in to lay with him and attempt to comfort him, but he told me to "go" and started screaming at me.  He didn't calm down until I left the room and closed the door.  I feel defeated.  Autism is defeating me right now.  

I feel guilty for not being able to comfort him.  I feel guilty because this sickness is following a very rare night-out that Mike & I have.  It's not that he seems to care when we leave him for a night-out, especially in the care of grandma.  And I know it's necessary for a marriage to have time away from the kids...especially necessary for my mental health since I stay home with the kids day-in and day-out and rarely spend time with other adults.  But, I still feel guilt for this.  Not only for leaving him and my duties as a mom, but now I feel guilty for even thinking this is slightly about me.  Then I feel guilty because maybe I'm not doing enough to help him conquer this part of Autism.  I dedicate a lot to him and helping him progress, but am I not dedicating enough?  How come other parents of children on the spectrum seem to get to comfort their children when they are sick without being yelled at?!  I know I know I know...every child is different.  

It's just not fair.  A mother's instinct is to comfort her child when they are ill, and it's not fair this simple action/bond has been taken away from Brycen and I.  I won't stop trying of course, but after 4 1/2 years of being rejected when he isn't feeling well, it's hard to think  it's going to change one of these days.