Monday, June 25, 2012

Fighting for him

Today I was babysitting a few kids and while they napped for a couple hours I read a book, yes an entire book.  It's called "Louder than Words" by Jenny McCarthy.  I am not a big fan of Jenny, we differ in more ways than one.  For instance....our lifestyles, religion, basically everything except that we both have children with autism, but for some reason I couldn't put the book down.  I guess I just needed to read about another mom's journey of confusion, frustration, anger, fighting so desperately for answers and to "fix" her child's autism.  Its crazy, but its so interesting to read about the different stages people go through.  One line that really hit me was "When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support.  When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle."  Its so true.  Obviously, I understand why you would comfort and aid a family with someone diagnosed with cancer, but often I wonder why some people avoid talking to me about Jacob like he has the plague.  That's how I have been feeling lately.  Its hard.  I want to be able to talk about it and cry sometimes, but I am supposed to just be okay with it by now.  Am I questioning why this is happening to me or angry at the world? NO.  But I still hurt for him.  I want him to be healthy and "typical".   I feel like I am in limbo right now, not that I don't want to do more for Jacob, but I am limited to what I can do because of insurance and money.  If anything this book is just what I needed to kick my butt back into FIGHT mode.  I just can't accept that there are no answers for him.  I know part of me must accept that he is different, but on the other hand I have to fight for him and keep seeking answers.  Jenny mentions a lot in her book about DAN! (defeat autism now) doctors.  Some of the techniques that they use are widely regarded as quack medicine by pediatricians so I have been reluctant to go to one, plus they cost a fortune.  I think I will look into it, though,  and just take Jacob to get some basic testing.  I have read a lot of research regarding yeast and heavy metal toxins and autism so it wouldn't hurt to have him tested. 

Today was especially hard for me and I think this book came just at the right time.  Instead of feeling sorry for him, I need to be his advocate and be strong for him.  For nearly 45 minutes today he frantically threw himself all over the floor, stretching out his arms and legs like he was so uncomfortable and just screaming and crying.  We tried snuggling, burping, changing, feeding, tv, everything, yet nothing would console him.  In that moment I just wished for a word.  I wished he could tell me what was hurting or what he wanted.  It was a cry as if in pain and not his temper cries and that was the hard thing for me.  "I don't know what you want, baby" I kept saying. "I'm sorry, buddy. I'm so sorry."  I would give anything to just know how to help him. 

Jacob turned 2 last week.  We had a super fun party and he did excellent.  No tears when we sang, and he played and splashed around in the water.  It was perfect.  His 2 year checkup wasn't as bad as expected.  Yes I had to fill out the crazy survey which showed that Jacob was obviously so far behind on every single question, but I was ready for it and I just breezed through.  One strange thing I wanted to document in case I want to remember in the future was that the doctor mentioned Jacob had dropped to the 1% for height and had just gotten in his 1 year molars.  I asked if his size and teeth issues were typical for autism and she said no.  He may just be a little guy.  He's my sweet little guy. 

He made a huge breakthrough in his picture exchange communication system.  We finally found a few games (putting bears in a tub and then spilling them out and straws in a bottle and spilling them out) that he loved enough to start pushing the "go" PEC for me to spill the items back out on the floor for him.  It literally makes me want to cry every time he pushes it.  HE IS COMMUNICATING!! Its only a matter of time before he can tell me more with his pictures and I can't wait.  He also has become fixated on the cabinet door hinges.  He opens the doors and just stares at them as if he is trying to figure out what makes the door work.  Its pretty cute, but I have to limit it or he would stare at the door all day. 

We tried Jacob in the 2 year old class in Sunday school this past weekend and of course he is not ready for it without a coach.  My husband thought maybe he would be okay, but I knew he wasn't ready.  When the teachers call the kids to line up or come listen to the lesson Jacob just has a blank look on his face as if they are speaking a foreign language.  He also had a huge rock from the playground in his mouth that luckily I saw and ripped out of his mouth before he tried to swallow it.  He just has no idea yet, but I have faith that he will.  My plan for this summer is to try and stay really concentrated on Jacob's therapy and get him into a DAN! doctor when we can.  Please pray that we find a good doctor who won't try to sell us on lots of pills and junk we don't really need.  I just need an honest doctor to run tests and help us with some answers.  I am so thankful to be recharged and ready to keep fighting for my little guy.  He is so precious. 

1 comment:

  1. We have been bringing our son, abram, to a DAN! Dr. For a little over six months. She has. Given us answers when no one else could. I would encourage anyone who could to seek a Dan Dr. while the child is young! We go to Stephanie cave in baton rouge Louisiana. If I could answer any questions you might have about the help our 2 1/2 year has gotten or the biomedical treatment please email me at