As a parent and professional in this field, I am often asked about our journey, thus far, from Jayden’s regression leading to his diagnosis of ASD and my thoughts on therapy options, school programs and placements, diet changes & biomedical treatment, amongst many other topics.
In writing this series of blogs, I would like to share our journey with you. I think it is important that more people do. It’s necessary to talk about the amazing things and the things that no one wants to talk about. It’s necessary because not everyone is on the same journey, we are all in different places, dealing with different things…some of us will never have to go through somethings that others will have to with our children…but we should still talk about them. Knowledge and experience make a difference in the lives of others. We should spend more time helping one another and sharing information and experiences rather than judging parenting styles or therapy/treatment options. We all have the same goal. We want our children to live healthy, happy, fulfilled lives!
My hope with this series of blogs is that those families just starting out can see that although their journey may be different, they aren’t alone, even though I fully understand how hard it is to feel like anyone else in the world is going through what you’re going through. I was one of those parents. I remember what I felt like…alone, scared, angry, sad…Alone because I felt like no one understood what was happening and what we were going through. Scared because I had no idea where to begin in getting the help Jayden would need, possibly for the rest of his life and mine. Angry because I couldn’t understand how something like this could happen when I had a healthy pregnancy and Jayden had developed typically and out of nowhere, we were robbed of that. Sad for the hopes and dreams I had on what my life would be like when I became a mother and all of the hopes and dreams I had for my child. I know for many, there will be similarities & opinions that may arise regarding some of the topics I write about. The truth is, we do not choose this life, it chooses us. Sometimes it is amazing, and sometimes it is scary. Sometimes you feel on top of the world, and sometimes you don’t know what to do next. It is important to know that there is no right or wrong way on this voyage. Each of you should choose what fits best for your family and child.
Jayden will be 17 soon…crazy, I know! If I have learned anything, I’ve learned that there is not just one tool in my toolbox. In fact, my toolbox is breaking at the seams. There is not one way. There have been things that served a purpose for a specific time in Jayden’s life and development that are no longer as helpful as they once were as he continues to grow. As a parent, you know when it is time to move on. You know when it is time to try something new and/or different. You know when something works and when it doesn’t. My toolbox is changing AGAIN…everything I know about children’s services is coming to an end. I’m packing those tools and saving them for those who will need them from me in the future. My new toolbox is a bit scary…feels the same as when I began collecting tools for my newly diagnosed 2-year-old son. If I am being honest, I don’t like it. It feels like I am starting all over from the beginning…its anxiety driven and scary to think of a whole new world in adult services that we have not accessed yet. But just like in the beginning, I know our journey is far from over and I knew no matter what comes our way, we will get through it together…teaching each other and learning from each other every single day. My tour guide is quite fabulous and if nothing else, I hope he knows that I’ve done my absolute best everyday that I’ve been his mama and above all things he is loved beyond measure.
Bear with me, as I begin Part 4 of a series of blogs about a day in the life with my sweet, handsome young man…
If you missed Parts 1-3, you can read them here:
Once Jayden was no longer on the Generation Rescue Family Grant, his father and I kept up with the cost of his new diet and the supplements he was getting free from the grant. His progress was so amazing, we felt we’d be doing a disservice to Jayden if we did not continue. The supplements alone were costing us between $300-$400 a month, after additional supplements were suggested by the Doctor Jayden had been following up with. We had also received the results from his stool and urine analysis. The results showed that Jayden had a major yeast and clostridia issue as well as a very high level of lead. The traditional finger stick for lead had come back normal but, Jayden went through a period where he mouthed everything, which could have contributed to this high level. Anything he could put in his mouth and chew, he did! We spent hundreds of dollars on different oral motor chews and things that where appropriate to chew on. They constantly had to be replaced because Jayden would chew right through them.
The Doctor had given us a treatment protocol to follow for a few months before retesting Jayden’s stool and urine. She also suggested we have an IgG food sensitivity test done for him. Again, another cost that insurance wouldn’t cover due to Jayden having traditional allergy testing done which was inconclusive for any food allergies. After having this test done, the results showed that Jayden had a moderate to severe sensitivity to gluten, mild sensitivity to casein & pineapples, and a moderate sensitivity to soy. Jayden was already on a gluten & casein free diet but many of the foods he was eating, substituted casein and milk products for soy. This required us to, again, change Jayden’s diet. We were pretty upset and nervous about it because Jayden had just started to eat a small variety of foods and continued to at least try others, even if he did not end up liking them. We did what we had to do and made the necessary changes with hopes that it wouldn’t be as difficult as the first time around and that by removing soy from Jayden’s diet, he would continue to feel better on the inside.
From March of 2011-April of 2013, Jayden was followed by the same doctor and continued his diet and supplement protocol. Many changes to his protocol were made throughout that time as well as more testing. Jayden’s yeast and clostridia levels had gone down from his initial test but were still very high. He continued to make progress, sleep well, and move his bowels regularly. He enjoyed going places again! In fact, there was not a single place we couldn’t take Jayden during this time! It was an amazing feeling after he had struggled with new environments for such a long time. He was so much happier, always smiling, and overall, in a much better place! His father and I were 100% positive that because he began getting some relief on the inside, it was really helping him feel better, which in turn helped contribute to all the positive changes we were able to see on the outside. Jayden didn’t get sick as often as he had in previous years. He eventually stopped mouthing things. Jayden had “graduated” from Feeding Therapy! Although he was still a picky eater, Jayden was eating a healthy balanced diet made up of meat, chicken, fish, fruits, and veggies and no longer needed any meals supplemented with the E028 Splash!
Jayden continued to struggle with safety awareness. Although he had made great progress in learning how to be safe and play safely on playground equipment, he began bolting towards the street. This was an incredibly scary “new” thing we were having to face and figure out all while keeping him safe. Jayden became obsessed with numbers and letters which was great but, it caused him to be visually distracted at school and in the community and many times, caused him to be unsafe, as he would bolt to look at them, no matter where they were. It literally took a second for Jayden to take off. He had never done this before. He would always hold our hand and not let go unless we did. The thought of Jayden getting away from us and lost, made me sick. Not being able to speak, how would he tell anyone he was lost? His name and where he lived? Who his parents were? This is one of the scariest things to think about as a parent. After learning about the Project Life Saver Program, I contacted our local Sherriff’s Department to get Jayden a tracking bracelet. At that moment we knew we’d rather be proactive and pray we’d never have to use it, then not have it at all. Some may argue that a tracking device is not appropriate. Many have tried to make jokes that it looked like Jayden was on house arrest rather than being mature adults and just asking what it was. Guess what? Laugh, joke, say what you will. I don’t care how it looks. My argument will always be that it could help save my sons life if he is ever in a situation like that. There is not a thing funny about that.
To Be Continued…
ASD: Promises To Keep 