I stayed in the grieving mode for awhile. I would come out for short breaths of air, look around on the Internet only to turn it off and try and forget about it. My relationship with my mom was strained, I was angry and Aleks' behavior was getting worse. In the next month, we sold our house, bought a new house, traveled to FL to pack up all our things and I knew it was time for me to act. I stopped feeling sorry for myself and her and decided that I would do whatever it was to fix her. It was at this time that I went out and bought Jenny McCarthy's book, Louder Than Words. To say it was life changing is an understatement. All of a sudden my fear was replaced with an unquenchable desire for knowledge. I read her book in just 2 days and then moved onto more books about the GFCF diet, biomedical interventions and what local doctors could help us. Trying to find a doctor was to be my first BIG hurdle.
Doing a morning show and getting up at 3:30am takes it toll on your body. My day would consist of going in at 4:30 for the show, meetings, production and then home around 11:30 or noon. From there I would kiss my daughter and husband and dive onto the Internet. Google became my best friend and I spent hours and days researching and filling my brain with anything and everything autism related. I also started calling local doctors and hospitals for an appointment to get Aleks in. She still wasn't diagnosed and without a diagnosis no one was willing to help me. By this time I had come to the realization that my daughter most likely was autistic. I also became so grateful for my mom's courage in telling me. I have since learned that it is quite often other family members who notice autism before the parents. It's a burden on the family member who breaks the ice and brings it up, but it is key in beginning the healing.
All the little things started adding up. Her speech wasn't improving and actually had gotten worse. I remember at her 18 month and two year visit telling the doctor and nurse that I think she has lost some of her vocabulary. I was told that most likely she hadn't and since she had reached all her other developmental milestones that they were sure she was fine. I kept telling them that I was nervous, something just didn't seem right with her speech. Their answer, let's get a speech therapist evaluation. That happened at 2 1/2 and was a disaster! Aleks wouldn't sit, wouldn't cooperate and seemed lost with the pictures that the therapist was showing her. We were upset and told that yes, she would most likely need therapy. Still, no word of anything more serious. So, jumping forward she is now 3 and we're living in MN. Her speech is still a problem and she started becoming a different child than my sweet, even tempered baby girl. She hated strangers, wouldn't make eye contact, walked on her tip toes and became emphatic about rituals. At 18 months she loved her veggies. At 3 she wouldn't eat any...not one. The only foods she liked were chicken nuggets, peanut butter, grape jelly, whole milk, grapes and lots and lots of ketchup. All of this would eventually make sense once we met her DAN! (Defeat Autism Now)doctor. That will be another blog.
Finally, after waiting for months we got her into a local hospital for an evaluation by a leading developmental pediatrician. This took 3-4 months and we got in because I called almost every day and asked if there were any cancellations. Finally, one day it happened. Someone cancelled and our September appointment was now July. Mind you it was now April and July seemed like a miracle. At this time I was reading all that I could about autism and doing hours of research online every day. We had met with her new pediatrician in MN and was told that yes, she has some autistic characteristics but that she couldn't diagnose her. I've come to learn that most pediatricians don't diagnose autism. Whether they can't or don't want to is a matter of debate. Our MN pediatrician at least listened and pointed us in the right direction. She may not have the answers but she didn't brush it under the rug. She encouraged us to keep digging and make appointments at the local children's hospitals. I did but it took several months to get Aleks into just one doctor. That was the developmental pediatrician that I mentioned. Finally the big day in July was here. Appointment day and I foolishly thought that I would come home from the hospital with some answers. Instead, after filling out almost five hundred questions (this was a prerequisite to being able to just make the appointment) and waiting several months to get in, we were left with, yes she has the symptoms of autism but we need a MRI before we can say conclusively.
In the meantime, I thank the Lord that I had been diligently searching for a DAN! doctor. All I knew is that I wanted to make sure I had a back up plan should the hospital doc not work out. Thank goodness I did. The problem was the first DAN! doctor I called didn't have an availability until October. I took the appointment but kept searching. It was this search that changed Aleks life for the better. It was this search that led us to Dr. S, our current DAN! doctor. This is where everything started coming together. Dr. S believed me when I told her that Aleks changed after her vaccines. She encouraged us to follow our gut and not have the MRI done. As we later found out, sedating Aleks would have put poison in her already compromised immune system could have spiraled her even further downward. Dr. S understood exactly what was going on and never waivered in her belief that Aleks would get better. Also at this time we contacted our school district and by the grace of God got Aleks in for testing before they broke for the summer. Our DAN! doctor and school district plus all that we had learned about biomedical was the beginning of pulling Aleks through the window of healing. This is where the story of joy, triumph and tears of joy come in. This 'window' is also where we still live in our autism journey.
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