(Disclaimer: the information I'm about to share is just our experience with our son, in his specific situation. Every doctor treats patients differently and has different theories, data and studies to back up their findings. This post is in no way proof of any cause of any developmental delay. It's merely our experience with our doctor and his advice.)
As I'm sure you've read in my previous posts about Brody, you know that Matt and I are pretty selective about where we get our information from in regards to autism. I do not read books by Jenny McCarthy (although I LOVE her new show on satellite radio because she is an entertainer NOT a doctor) and I also have no interest in conspiracy theories about how food coloring causes Autism or that McDonald's gave Brody a speech delay. None of that nonsense interests us. Matt and I are not looking for someone or something to blame for Brody's autism.
I did, however, used to blame myself. I've been down that road a hundred times and constantly felt like I gave Brody autism. I am his mother. It is my fault. Shame, shame, shame...why did you eat that cheeseburger when you were pregnant? Why did you go to work when you were sick? Why didn't you drink more water? On and on...
The first couple of weeks at school this year were very tough on Brody. They were tough on all of us. His beloved teacher who followed him from preschool to kindergarten left to join a non-profit organization for families with special needs. And the teacher who was hired to replace her quit after 4 days. There was a constant string of teachers coming in and out of the classroom, not to mention all new students in his class.
It was awful and this was probably the worst 3 weeks of our lives at home. Brody didn't know which way was up. I took almost 2 months off of work to deal with all of the stress (I work in Web Content Development and deal mainly with contractual work so I had some flexibility). Brody wasn't sleeping. Nothing made him happy. He started to injure himself and that was terrifying. He would ask for things via his iPad...we'd give him what he wanted, and he would scream. It was insanity. I didn't think I would make it. I thought our family would soon be reading about me in the paper..."Crazy Mom Holds Up Dairy Queen at GunPoint" or something...I was losing it. Our sweet Brody was gone and replaced with an angry, tired, aggressive and mad little boy.
All of our fears about autism bubbled to the surface for a scary and heart-wrenching month.
In the midst of all of this insanity, I called our pediatrician and took Brody to meet with her. I explained all of his symptoms. She suggested a few things including medication. I was extremely skiddish at first about medication...we didn't want Brody to be zapped into a zombie. She assured me that the medication she would prescribe would be gentle and would help him relax during school. Transitions are VERY hard on Brody (going from one task to another) and this medication would ease that stress. I trust our pediatrician and she's seen Brody since birth. And wow...did she make an excellent suggestion.
We also (slowly) started to remove some of the sugary snacks Brody was eating. We took away popsicles and replaced them with frozen fruit. We now serve Gluten free pizza, too. I'm not sure if it's the absence of sugar or other things, but it's working for him. He's at more of an even "keel."
A couple days after we saw our pediatrician, I also called Brody's neurologist and pleaded with his nurse to squeeze us in for an appointment. Brody's neurologist is rated #1 in the city of St. Louis...it takes about 2 months to get in for an appointment. After a few minutes on hold, his nurse said they would fit us in and four days later, we were in his waiting room.
This is where the story gets interesting...
We met with Brody's neurologist for an hour. He sat with us for the entire time and observed him, asked questions and he answered ALL of my questions...without a pause for a breath. Here's some of the stuff we covered:
Self Injury: this is by far the scariest part of autism and what frightens me about Brody's condition. Some kids with autism self injure out of frustration. They can't communicate so they hit themselves to express anger or fear....hey, I would if I couldn't speak. His doctor explained that once he self injures, he'll always self injure. It's part of his behavior now. So, we need to do everything in our power to make sure it doesn't escalate. This is our main priority with Brody...NO self injury. And we haven't seen ANY self injury (other than maybe a tap here or there, nothing serious) in four weeks.
Medication: Brody is on the perfect medication for his age group and diagnosis. Period. This was the right decision. His neurologist was pleased we started it. He said he couldn't have made a better suggestion...that felt great.
Causes: So...here's where it got VERY interesting. Towards the end of our appointment, I told Dr. Mantovani that I felt I "did everything I could to make sure Brody would NOT be autistic..." I rattled off the facts that I made his baby food from scratch, that I spaced out his vaccines, that I avoided additives while I was pregnant...etc. And you know what he said?!
"That's because it was nothing you did."
That's right. Brody does not have autism because of something we did or didn't do. He went on to explain:
"Brody was autistic before he was born. This is who he is. This was spontaneous especially since you have a nuero-typical son. We have the data that proves this...we know it is genetic. We know there is a gene that is suppressed in autistic children. And I suggest Brody have genetic testing."
My mind was blown. Now...knowing Brody's genetic cause of autism will change nothing. But, he will give us some insight especially if Destin gets married and has children...we should know if there is a genetic disorder involved. He went on to explain even more:
"Autism is a disorder that is typically accompanied by an overlying disorder...autism is a symptom of another condition."
We talked for another 20 minutes about genetic testing and what that entails. We'll most likely schedule testing after the holidays and see what we find out. I asked if he thought Brody fit into any of the typical categories of genetic causes of autism and he said he didn't. Brody has none of the typical facial or cranial features of any genetic developmental delay that he is aware of, but blood tests will tell him more.
The appointment ended with me holding Brody and kissing him like crazy in front of the room of nurses and our neurologist. I told them that I still felt like Brody was "my baby" and I loved holding him...and how relieved I was that he was still loving and sweet.
"You're mothering the child you have," Dr. Mantovani said. Then he hit me with this:
"You are doing everything right."
As parents I think we always feel we could be doing more, and I am no exception to this. I am constantly thinking about what else I can do for Brody to help him be as successful as possible. Maybe if I just had more time, or a million dollars or maybe if I had more training in speech therapy...or maybe I could get a Ph.D in Child Development, then I could help him....and so on...
I cannot tell you the joy in my heart I felt when I heard those words..."You are doing everything right." Those words gave me the strength to keep pushing with every fiber to get Brody the best of everything. It was like our doctor knew what I needed to hear at that moment. And that we made it through those insane three weeks and came out on the other side.
The medication Brody was prescribed is changing his life. He is back to
his old self...now it didn't happen overnight, but within a few days, he
was smiling, laughing and talking. He now says mom every single day.
And "bye bye" and "juice" and "help..." the list goes on. The self
injury stopped immediately.
We have our boy back and everyone is smiling. And you know what? If it gets tough again, I know we'll be ok. Because we are doing everything right.
