A Sad Smile

This past May, I sat in an empty waiting room with one of my daughters. She periodically looked up at me and I could tell she was wondering what we were doing there. I looked at her and gave the best smile I could. It was a sad smile though. I couldn't help it. I am not good at faking my emotions.

Soon, the side door opened and a nurse called us in. We followed her to a room full of toys and a toddler table. My daughter was in her stroller and trying to bury her face into the side of it. She could not stand for strangers to get to close to her or to even look at her.

The nurse asked me to sit down and gave me the same sad smile I just gave my daughter; as she shut the door and walked out. I pulled my daughter out of her stroller and let her walk around the room. She was intrigued by the toys but hesitated to walk too far away from me.

The door opens a few moments later and two women walk through. My daughter ran over to me and buried her face into my stomach. The two women were doctors and tried to make eye contact with her to no avail. Every now and then my daughter would peek over at them and then bury her face again.

The women proceeded to ask me a long list of detailed questions about my daughter. They wanted to know if she spoke any words, does she eat with a spoon, does she eat vegetables and on and on. It took about 1/2 hour of questions before they started interacting with my daughter. By this time, my daughter was finally able to stop hiding her face and actually looked at the doctors and around the room.

One doctor pulled out a picture book page and asked my daughter to point to certain objects. My daughter pointed to all of them correctly. I was so excited and thought nothing is wrong with her. She is such a smart girl. Then the doctors asked her to go and get a certain toy. My daughter froze up and didn't want to do as they asked. She just sat and looked at me as if she was scared. All of a sudden I felt sad again. Why won't my daughter go and get a toy? Seems like such a simple task for a 2 1/2 year old to do. Why is she scared?

The doctors brought out more toys and dissected my daughter's every move on how she played with them. They watched my daughter grab my arm and try to make me reach for a toy she wanted. They quickly grabbed their pens and took notes. They watched her turn one toy upside down and inspect it. They quickly jotted down more notes.

I felt like we were animals on a dissecting table. It was uncomfortable for me. I know it had to be just as, if not much more, uncomfortable for my daughter.

The doctors stood up and said they need to leave the room and privately discuss their findings. I thought they would be gone for 1/2 hour or more. It only took them 5 minutes to come back into the room and say, "She is autistic." Just like that. The whole "dissection" took 50 minutes and they came to a decision in what felt like seconds.

I sat there in shock and was quiet as they continued to talk. I do not know what else they said to me because I was not absorbing anything else at that point. I felt the first tear fall down my face and then the next. I tried to hide my sadness from my daughter and pull myself back together so I could ask intelligent questions.

They gave me a small box of tissues and gave me that sad smile I gave my daughter just 50 minutes ago. They quickly gave me a list of books I should read on autism and told me about state programs I need to look into.

I started asking, "Why?" "Why does my daughter have autism?" They could not answer me. I asked them, "How do you cure autism?" They could not answer me. I remember saying, "So, my daughter has an illness but no one can tell me how it suddenly appeared and how I can make it disappear?" They just gave me that sad smile with a shoulder shrug this time.

I also asked without expecting an answer at this point, "Is there anything I can do to get my daughter back? Are there any medications that help? Are there any doctors out there that can help my daughter? Are you telling me to read a few books and get help from the state and that is all you can prescribe?"

I went on to say, "I heard about autism a few times and heard a gluten-free diet helps. What do you think about that?" They looked at each other, as if this is the standard question, and one said to me, "The diet is not medically proven to help autism."

At this point, I had heard enough. Actually, I hadn't heard anything that was helpful. I just wanted to leave. My daughter had grown attached to a specific toy in the room while I was asking "unanswerable" questions. I picked her up and put her in the stroller. She was clinging to this toy. I knew this was going to end in a huge melt down when I took the toy away.

I wanted to take the toy away in a slow manner. I was going to try talking to her and explaining that the toy has to go, "bye, bye." Before I even bent down to talk to my daughter, one doctor grabbed the toy, opened the door and "helped" push my stroller out of the room. Of course my daughter started screaming and pulling on her hair. The doctor walked ahead of me and tried to rush me out of the office. She was motioning with her hand to "hurry up." She opened the side door and said, "Bye."

I wanted to kick the doctor in the butt on my way out but I was falling apart; emotionally. I felt like dropping to the ground and crying my eyes dry. Of course I had to be strong and try to make it to the car without crying. I can't believe just one hour earlier, I was sitting in that waiting room without answers to some "strange" behaviors my daughter had. I did not think of my daughter has having "special needs." I thought maybe a few behavioral issues but nothing we can't deal with and fix.

Basically within an hour, my life changed. The way I looked at my daughter changed. I was told my daughter now has a life-altering illness and there is not one thing the medical industry can do for her. It felt kinda like this; your daughter is sick...too bad we can't help...now get out!

When I say, "I look at my daughter differently," I don't mean this in a negative way. I look at her with a new understanding. Things suddenly make sense to me now.

Those two doctors that diagnosed my daughter in 50 minutes basically said there was nothing I could do to help her but read books and ask the state for therapy. They discounted every other idea I had on how to help her. For example: A special diet and the help of DAN (Defeat Autism Now) doctors.

Good thing for my daughter is that I am not the sit and listen type of person. I investigate. I will never accept that there is nothing I can do to help one or all of my kids. Matter of fact, if a doctor tells me there is nothing more we can do that just gives me more fuel to research.

I would like for those two doctors to know that the special diet is helping my daughter. I know a gluten-free diet does not work for every autistic child (I wish it did) but it does help mine. It has not been a 100% cure for her but it has given me my daughter back in many, many ways. I also found a DAN doctor who prescribed supplements that make a world of difference for her as well.

I wish those doctors would have said, “Try the diet, it can’t hurt. Try contacting a DAN doctor, that can’t hurt either.” Why would they give me such devastating news and then rush me out of the office with no clear path ahead? I am sure there are doctors out there that deliver this kind of news with more compassion but for those mothers, who may experience such a day, know there is help out there for you.

The truth is there is a lot I can do for my daughter. There are doctors out there that want to help and CAN help an autistic child. I still read books and I am getting her therapy through the state but now I feel something I didn't have that one day in the doctor's office: Hope. No more sad smiles to my daughter. She gets full-on happy smiles now. We have a long road ahead but I am hopeful and so very proud of her.

Smile on,
Alicia