Saturday, April 11, 2009

Braydon's story

He was still thrashing, kicking, screaming and crying. I tried to calm him down as we've been doing a lot lately. I held him tightly with his back against my chest and repeated softly "It's okay, Braydon. Mommy's here. We love you." As I sat on the floor of my four year old son's room, I knew that we had to be missing something. I closed my eyes, took a deep breath, and quickly thought back to what had just been a typical Friday afternoon. I picked him up from Pre-K as always, and of was informed that he had yet another rough day. Would he ever out grow this? I thought. We got into the car, and headed towards home.

My husband called me to see if we could stop at the store on our way home to pick up some hamburger buns and chips. It was so nice to have a husband that enjoyed to cook every now and then! I glanced back at Braydon, who was smiling as he gazed out the car window. "I think we can do that since it's just a few things."

As I hung up, I heard Braydon say something. And then he repeated it. Again. And again, ten times in total. "They didn't do it right." is all he said. I quickly checked both sides of the car to see what he was talking about, but we were surrounded by the North Carolina countryside, and there were no other cars near us.

"Who didn't do it right, honey?" I asked.

No response, just a blank stare.

"What didn't they do right, sweetie?" I proded.

"They didn't do it right." he stated in a monotone voice.

Then he blinked his eyes, looked at me and began talking about his day at school and a fellow classmate, as if he hadn't said anything out of the ordinary. I brushed it off for now, figuring I'd talk to my husband about it later on in the evening, after we had gotten the kids into bed. This wasn't the first time he'd repeated himself like that. We'd just add it to "the list".

Stores are usually a struggle for us, but atleast his younger sister was at home with Daddy, and we only had 2 things to get. I reminded Braydon that we wouldn't be getting a cookie this time, but we could get a balloon, providing that he behaved himself.

Do all moms have to bribe their children? I reassured myself that yes, most likely every mom bribes their kids before they go into the grocery store. Braydon jumped into my arms and I lifted him into the seat of the cart, because he just can't handle riding in the basket or even walking. We've learned our lesson and it's just easier to put him in there, even though he's almost five years old. Braydon was excited when we saw some coupons so he grabbed a few. I snickered at the thought. Only my child would get this excited about coupons! Just another one of those quirky personality traits which I personally found endearing.

We continued down the bread aisle, Braydon looked at me funny and out of no where, he began to punch me. Punching quickly turned into an all out attack on me. I stepped back as he was kicking and thrashing at the air, and the he turned his attention to the bread. He squeezed and squished the bread he could reach. I grabbed the hamburger buns, and managed to get him out of the cart. I set him down and began walking towards the chip aisle. As I walked away, he realized that he was going to be left behind. He quickly caught up with me, and didn't say another word. Somehow we managed to make our way back to the front of the store to check out. Right as we got to the front of the line, he insisted he had to go to the bathroom.
Ugh. Stores were bad enough, but public restrooms were a whole other story. Braydon had "issues" with public bathrooms. He literally cries, screams, and tries to claw his way out of the bathroom. He also covers his ears and starts shaking. For a while, we thought something was wrong with his hearing because he was so sensitive to loud noises but would also not respond to us when we called his name. His hearing was fine, so we assumed he'd eventually outgrow this fear. We were wrong.

He would not go within 10 feet of the bathroom, even though he insisted that he had to go. He stood shaking in fear while holding himself. It was evident he really did have to go, but this inexplicable fear of the bathroom was obviously winning the battle against his bladder. It just wasn't worth it, so we returned back to the line. He pleaded with me again saying that he couldn't hold it any longer, so we returned to the bathroom. Or I did, rather. I turned around and Braydon was still standing 10 feet away from the bathroom, shaking once again. Frustrated and just wanting to get out of the store, I gave up with my pleading with him to go to the bathroom. He was three months shy of turning 5 years old. If he wants to pee on himself instead of peeing in a public bathroom, that was fine with me. He'd be the with the wet pants, and atleast I could buy the groceries and get home!

Finally after making it out to the car, I struggled for 15 dreadful minutes to get him in the car seat. I had been bit, kicked, scratched, punched, had hair pulled, and tears were streaming down my face. Finally, I just couldn't take it. I began sobbing and just stopped fighting with him. As he was screaching at the top of his lungs in my car, the only thing I could think is This is just not right. Something is wrong. It can't be ADHD, there must be something more to this.
I put the car in reverse, and he clicked back into "reality". He quickly put on his seatbelt and mumbled something about the police going to put me in jail because he didn't have his seatbelt on. Then the screaching started back. I picked up my cell phone & called my mom so she could hear what I was hearing...I repeated my "Something is just not right!" She told me we'd figure it out, that it'd be okay.

We made it home, but it just got worse when Braydon saw Kenney. He went up to his room and was kicking and thrashing again. The only thing I could do is hold him, and rock him. this was it. I knew something had to be done.

I called his pedi the next day to get him seen, and of course, he had "issues" out in the lobby. When we got in there, he was going wild. He wouldn't and couldn't sit still. He constantly was trying to climb up the walls, and run out of the door. I looked at the look on her face and flat out asked, "Is this normal? He was diagnosed with ADHD, but is that normal for kids with that?" Even before I had finished my question, her head was shaking 'no' and said she really wanted me to take him somewhere else to get re-evaluated. This was bittersweet. On some level, I desperately wanted her to say "Yes, that's normal, he'll grow out of it" But I knew that it wasn't.

Aside from having a few friends whose kids had autism, in a severe form, I knew relatively little about the autism community. I had indeed gone to Jenny McCarthy's "GREEN OUR VACCINES" rally in Washingon DC. I've read all of her books, starting with "belly laughs" when I was pregnant with Makenna. For some reason, Jenny's story just resonated with me. It was a horrible tragedy that she walked through. I had nothing even remotely in common with her, except that we both were mommies to little boys. But I just knew that those books struck such a chord in my heart when I read them. In fact, Kenney even got me one of her books as a Christmas present. But I really didn't know where to start. I went to the only place I knew to look for help: Generation Rescue

Generation Rescue is Jenny McCarthy's site designed to link parents new to the biomedical treatments of autism and other forms with parents who had "BEEN THERE, DONE THAT". They're called rescue angels. I contacted one in Raleigh, who gave me some AMAZING referrals, one to a developmental pediatrician, and one to a neurodevelopmental pediatrician, who was also a DAN! protocol doctor. From my online researching, I learned that DAN! (which stands for Defeat Autism Now!) doctors attempt to treat using biomedical approaches first and foremost, and then will turn to meds if neccesary. They also try to treat the whole child, not just one part.
I called to get appointments with each. The first one was the developmental pedi, about 1 hr 15 mins away. We could get in with him, but would have to wait about 2 months. When I called the neuro-developmental pedi in Wimington, the first available appointment was not until July. I've heard amazing things about this woman, so I figured it'd be worth the wait, as well as the drive to see both of them.

The first appointment went well, the doctor really connected with Braydon, and in fact it was the first time I've seen him make eye contact with anyone for quite some time. He didn't have any of his "outbursts", which of course I figured meant the doctor would tell me he was fine, and that I had wasted my time and his time. (But wait, isn't that what part of me wanted him to tell me?!?) But even with his superior behavior, we were given a preliminary diagnosis. You may remember that I spoke briefly about this in a previous post.

A week after we got home from seeing the 1st devel. pedi, I got a call from the 2nd clinic saying they had a cancelation and that they could see us on the 8th and the 9th (they do 2 seperate appointments for your first visit). We went down there, and on Wednesday afternoon went straight to the doctor. This time, we were not so lucky about the no outburts. But this woman was incredible. She got down on the floor with him and showed me how to hold him, so that no one would get hurt. She reassured me that this was not the first time, nor would it be the last that she had to help do that.

Once again, after this appointment we were given the exact same diagnosis, even without them comparing "notes". I feel fairly confident that we have a good diagnosis, which I finally will share. His diagnosis is "PDD-NOS" which stands for Pervasive Developmental Disorder, Not Otherwise Specified. PDD is the clinical term for autism. It's also referred to as ASD, autism spectrum disorder. You might here people refer to kids with autism as "on the spectrum" which means they have autism. Braydon is high functioning, but he has some speech problems, which means he could not be included in the "aspergers" category. PDD-NOS is basically a category for children who do not have enough criteria to fit any other

We are so encouraged though with the doctor's list of supplaments to begin treating Braydon's gut problem as well as getting his brain to function as well as it should. We will be doing some other lab testing this upcoming week to check for toxins, etc. We have a follow up visit in 5 weeks to determine whether Braydon would benefit from a exclusion diet or not (GF/CF)
Although the diagnosis is not necesarily a happy one, I do know that know we'll be able to get him the services he needs to get in order to have him be very successful in school. And it doesn't change the way we look at him or love him one bit. And I hope it won't change the way you feel about him either.