At the age of two, my daughter M was not developing like I thought she should be. She was so behind all of the other children with Down Syndrome it seemed, and I was feeling really low about the situation. At three, she entered the school system, and I welcomed the help. She seemed to more and more be drifting away from me, and the smile and light in her eyes that she used to have just drifted away. She just wanted to watch Barney and eat all day long. I noticed that she was getting heavier too. Meanwhile, my husband and I decided to try for another child. I had heard that having a sibling sometimes encouraged the child with special needs to develop, so that fueled my desire for another child even more. In 2008, I gave birth to our second child.
Our littlest (E) did not sleep well either, and I would have to sit on the bed with her on my lap while she napped in order to get her any rest at all. In the process, I read a lot. One of the books I read, and I have NO idea why I chose this book, was Healing and Preventing Autism by Jenny McCarthy. As I read, I realized that all of these physical symptoms that she described also fit M to a “t.” I read about the horrible smelling bm’s and the bloated bellies. I read about sleep issues and children not being interested in anyone around them. It was just one thing after another. So I decided that even though my child wasn’t autistic, there were similar symptoms and that maybe the treatments could help my daughter.
One of the first things I did was to start M on probiotics and Vitamin D. After about a week of this, her therapists started to comment on her eye contact and how she was actually making it! I told them what I had been doing. One was thrilled and the other just shrugged it off. I then decided to visit the in house nutritionist, and she had me start M on a high dose multivitamin for malnourished children. I began using that, and when our daughter’s teacher came back from maternity leave, she asked who this new child was. M had started to actually notice things around her. It was like a fog lifted, and she became aware of a world outside of herself. This was just so incredible to see! However there were still alot of issues. One thing that really disturbed me was this droning and jerking that she would do. It was this “Eaaaaaahhhhh, eaaaaaaaahhhh” sound coupled with a violent torso jerk that she would do while standing staring at a wall or standing in a corner. I noticed it when we had last visited Gigi’s Playhouse. She just stood at that ball pit and jerked. As I thought back to this, I just knew that we were not dealing with Down Syndrome. So I went once again to the professionals.
I contacted the teacher and school psychologist, and I also spoke with the private therapists. The OT told me that I could have M presented to the Medical Advisory Board at Easter Seals to have her checked out. She said to not tell the board what I suspected, but to let them look at her and see what they thought. The team of therapists, PT, OT and ST, did a three minute video of M each for the board. Meanwhile, the school psychologist went into the classroom and took a fresh look at M. Lastly, I made an appointment with a neurologist. The neuro appointment was on a Monday and the MAB was on a Tuesday. The school psychologist said that she did find some traits that looked autistic, but I knew that her statement was not enough. We went to the neurologist who observed her and asked questions. He also believed her to be autistic. But still, though that was more confirmation, I waited to hear what the MAB would find. The next day, after only one three minute video of M, the developmental pediatrician said, “You DO realize that this child has a secondary diagnosis of autism, don’t you?” That was it! I KNEW it!
Honestly, I was actually giddy. Partially because that meant that I wasn’t crazy, partially that my child just wasn’t THAT delayed genetically, and partially because I knew that people could DO something about Autism from what I read. So I got to work. I contacted a (formerly known as)DAN! nutritionist who helped me change M’s diet to gluten, casein, and soy free. I found her through reading a book called Special Needs Kids Eat Right by Judy Converse. When I removed the last vestiges of gluten, casein and soy, M got really sick. There was no vomit or any other symptom that a higher fever that made her just sit like a lump on the couch. I thought I remembered something about this in her book, and sure enough I found it. Apparently when you remove foods that your immune system is attacking on a daily basis, it discovers the things it should ACTUALLY be fighting. So M’s body found some honest to god baddies to fight instead of the copious amounts of goldfish (DAMN you, Goldfish!) When the fever broke, she was giddy. I mean, really laughing and happy! I knew then that I was on to something, and I have not looked back since.
However, I was angry for a long time. I lost a couple of years that I could have had to make changes and to stop making bad choices that may be impacting M’s health today. That is something that I still grapple with. I wish that I had just kept listening to myself and not taken the initial professionals’ words for it. Honestly, up until maybe 15 years ago or so, doctors didn’t even think it was possible for the two diagnoses to exist. They said Autism COULDN’T co occur with Down Syndrome. But parents know. We DO. We know when something is not right.
And THAT my friends is my message to all of you moms and dads out there who have this nagging feeling that something is off. Maybe you know what the problem is. Or you just sense that there is a problem but you can’t put your finger on it. I am going to say something that I didn’t invent but is so true. Trust your intuition. You are the expert on your child.