Makin' some lemonade

We sat in a tiny office with two doctors who had just evaluated our son and heard the word "autism." It took my breath away. Never had I felt so much relief, fear, and heartbreak at the same time. I was relieved because I didn't want to be "that mom" who imagined all these symptoms, overeacted, or made a fuss of nothing. I was also relieved because at least now we knew for sure and could make a plan. Of course, the fear and heartbreak came from the unknown and wanting the easiest and best life for our son. Hunter and I knew before this appointment that autism was a possibility, but to hear professionals confirm it changed our lives. We would move mountains, sell everything we own, do anything really to help our boy. As a nurse, I wanted a manual. I wanted a guideline, an algorithm, a full proof plan telling us what to do. All we got was, "start early intervention with the health department and find ABA therapy." We drove home with our sweet little two year old boy in the backseat holding back tears and extremely over whelmed.

What we soon found out was that there is no one treatment plan for autism. There are only mere suggestions of what may help your child: speech, occupational therapy, physical therapy, behavioral therapy, hippothearpy, music therapy, play therapy, and the list goes on and on. Nevermind the fact that none of these are free nor are they located in our small town Mississippi. On top of that we learned that "if you meet one child with autism then you've met one child with autism." Every single child or adult with autism is different. What works for one child may not work for the other. When you meet another autism family don't even begin to compare because all milestones, challenges, and behaviors are different. We felt so frustrated and lost.

We started with Early Intervention at the Health Department and began asking everyone we knew about the best resources. We quickly found out about a program at Ole Miss in Oxford, MS with the Speech Pathology Department that works with kids like Nolan. He was put on the waiting list and there he sat for almost a year. I can't describe the helpless feeling of wanting the best for your child and knowing you can't have it. I'll never forget the day I got a phone call from the department at Ole Miss saying they had an opening. I wanted to jump through the phone and hug them! Instead I said thank you, wiped my tears, and called everyone I knew that had been praying for this opportunity. I am forever thankful to the people in that program because they taught us and Nolan so much in the 2 years he was there! In that time we were also put in touch with an ABA therapist who started coming to our town to see other kids with autism. Nolan got 2-4 hours a week of ABA therapy and we noticed he thrived in it! We also started music therapy at someone's home in town and he was doing well there too. It's funny though, each little milestone or new skill just fueled our fire to do more for him. We kept hearing over and over and over: "the earlier you get intervention the better." I felt like we were racing against a clock, so any chance I could I poured into facebook groups and books looking for more and more. My poor husband is the sweetest and just rode the rollercoaster with me. Some ideas and therapies ended up being pretty bogus and others we gave a try. Some worked like ABA, music, speech, and occupational therapy. Others were a big flop.

In late 2018 I heard about how fish oil could help children with autism. At first, I thought, "Whatever! If it was that easy everybody would be doing it." I'm a "see it to believe it" kind of person so I started looking at the science behind it. I figured we would give it a try because a little fish oil never hurt anybody. I'm here to tell you that a few months of consistently giving him fish oil daily and we started to notice some changes. He was more alert to his surroundings and not in his own world all the time. Walmart used to be easy with him because he sat in the buggy and minded his own business. After a few months on the fish oil supplement I refused to take him! Ha! He noticed everything and wanted it all in our buggy! I also noticed he paid more attention to others in the room. He knew directions too! On the way to pick Harper up from school he would point down the road that goes to my parent's house and get super upset when i didn't turn that way. I don't credit all of his progress to just a fish oil supplement but I knew there was something to it. It was the only thing that had changed. I was the person who heard about diets and supplements before but quickly dismissed the idea. However, the proof was there in my own child so I had to know more.

Once I quit work in early 2019 to take care of Nolan full time I had a little more time to do the research I wanted to do. I poured through information and talked to other moms who had changed diets and tried different supplements, but it was all so overwhelming. On top of that, I was very nervous about giving Nolan anything else without the help of a professional. It wasn't long after we started going to Canopy in Jackson that I met another mom who had taken this same path with her daughter. I saw the proof right before my eyes with her daughter and she was patient enough to answer my millions of questions.

I learned that there are these doctors who practice "funtional medicine," or "biomed" as some call it. They are doctors and nurse practitioners who search for the root cause of a symptom or behavior instead of just treating it with medicine. Most of these functional medicine doctors entered this field because they had been personally affected through a child of thier own or family member. They are few and far between in the United States and aren't widely used because it is seen as an alternative medicne. Most of these doctors don't take insurance either which makes it even more difficult. We chose Dr. Cave in Baton Rouge, LA after a lot of research, planning, and prayer. After a few months wait we had our first visit on November 12. She spent 3 hours with us and Nolan in her office going over his life history and discussing our goals and concerns. Our goal was mostly to find out if there was anything medically speaking that was holding Nolan back from reaching his full potential. She had a lot of different theories and we agreed to some tests to get the whole picture. He had blood drawn for the first time in his life (that he is aware of) and it broke our hearts. That was honestly the hardest part but I have to commend the nurses there because they were so good and so quick. Nolan was over being at theappointment after the 3 hours talking in Dr. Cave's office and enteretaining him in the waiting room in between tests was pure enteretainment. At one point Hunter was doing walking lunges across the waiting room while singing Mickey Mouse with Nolan on his shoulders! But hey, Nolan wasn't fussing anymore! We were sent home with a slew of urine and stool tests to collect and mail in along with a whole lot to think about.

On December 19 we had a phone call appointment with Dr. Cave to go over Nolan's results. We expected a few things to be abnormal, but we were surprised at what we found out that day. She started the conversation asking, "has your son ever had seizures?" I told her that he hadn't and she couldn't believe it. One of the tests Nolan had done measures the levels of neurotransmitters in brain. These are the chemicals your brain uses to grow, change, and function. I won't go into the results piece by piece, but basically what was suposed to be low was high, and vice versa. And I'm not talking marginally off. . . the results were through the roof. For example, his serotonin level could be 200 at the highest. His result was 6,000. His dopamine, adrenaline, everything like that was high. Another test showed yeast in bloodstream that was spilling over from his gut. He also wasn't digesting food the way he should so he wasn't getting the right nutrients for his body. The most astonishing of all the results were the heavy metals that had accumulated in his body. He had high levels of aluminum, mercury, arsenic, uranium, barium, and antimony. One reason for this is the gene mutation we found out he has called the MTHFR mutation. For whatever reason, Nolan can't detox things like the average person can. So chemicals and additives in the air, grass, on food, in tap water, medicine, and even the vaccines he has had have built up in his body instead of being flushed out.

I felt like we were back on that day in 2016 when he was diagnosed. Relief to have answers and a plan but fear of what the future looked like. The good news is that Dr. Cave has many, many years experience treating kiddos like Nolan and she has given us a great plan to start on. She told us his body didn't get that way over night and it won't get better overnight. Patience and persistence is key . . . isn't that the truth about so much in life? Nolan has started supplements to fill in those gaps where he has missed out on nutrients for so long. We are starting a program to remove the toxins that have built up in his system and learning ways to prevent them from building up again. We've slowly been changing his diet as well. It has been a huge change for our family and for Nolan but we are all adapting slowly but surely.

If I'm being honest, everyday we thank God for these new answers, but also shake our heads in frustration of what this little 5 year old boy has had to go through so far in his life. On the really tough days when I get down and aggrevated about autism I think to myself, "there is always somebody who has it tougher." We are so incredibly blessed so why should i complain; even if it is just to myself? I know one thing for sure: we all have our own struggles, and whether big or small they still affect us. There will always be good days and bad, but it's up to us to decide what to make of it. I've heard it said, "There's no lemon so sour you can't make something resembling lemonade." Get down, angry, and frustrated about whatever life has handed you . . . and then you get back up, find the joy, and make a way.

our trip to Baton Rouge