When I began writing this blog, I envisioned it as more of an instrument to share successes than the journal of intimate feelings that is has evolved into being. I hoped, and maybe even believed that by this point, my sweet daughter would be making all sorts of noticeable progress, and that you all would be amazed at her triumph over her autoimmune disease and autism. But life is not a fairytale, and despite thousands of dollars, and a whole lot of therapy and effort... Avery remains in her own world most of the time, and is still very much impaired, non-verbal, and held back in many ways by her diagnosis and disability.
In fact, if you would have asked me a week ago if Avery was on the verge of any big gains, I would have smiled and politely told you how much I love my child unconditionally, and how she has enabled me to understand how to happily live without expectations, but that, no... nothing was right around the corner. She was still a long way from making any giant leaps. I love when I am wrong.
All that being said, I am very proud to announce, that Avery is using the toilet. If that doesn't seem like any big deal to you, then you don't know Avery. Because, this is HUGE news. Avery cannot use a fork. She cannot pull her pants up or down. She cannot say a single word consistently. She cannot respond to most verbal commands. She cannot run, or jump, or skip, or drink from an open cup.... but she CAN and IS using the potty. It's not 100% yet, and she can't initiate that she needs to go. But miraculously, when I put that sweet little girl on the toilet... she knows just what to do! Elated, shocked, overjoyed, and astounded don't begin to describe how I feel right now. I should make up a new word.
At first I thought it was a fluke. One of our many therapists was here and Avery walked into the bathroom and touched the potty. I checked her diaper and she was dry but I knew she had had quite a bit to drink, so I said "maybe she needs to go potty." The therapist didn't miss a beat, and said, "let's put her on there." So we did and within a minute, Avery peed! I immediately teared up and started laughing. Shock. We alarmed Avery we cheered so loud, and promptly gave her a whole book of stickers. I hadn't even attempted this before as I saw NO signs that she was anywhere near ready. Again, I love when I am wrong. That day she went 4 times, and is doing better all the time. She is starting to go on the potty at school, and even went in public three times while we were out of town this weekend. Unbelievable.
I know I say it all the time, but I am so grateful that I have Avery to help me learn not to take things for granted. Every look, every interaction no matter how seemingly small or insignificant, every skill learned, every sound... I am appreciative. And not just for the gains Avery makes. Watching Kaylin blossom is so much sweeter, and knowing how it can all be lost makes me soak up every minute.
So finally, something isn't impossible. Every single day Avery gives me at least a moment where I see a glimmer of hope. That hope looks different today that it did two years ago when I prayed that by now she would be "on track." Today that hope lives in the moment. It exists in the present, and enables me to love and adore Avery for who she is right now and the amazing things she CAN do.
My heart still aches from time to time when I project long term, but I am so delighted to be able to have clarity. To see beauty in a glance, in the slightest noise, and in the softest tinkle.
Monday, October 12, 2009
It's here again. That ever gratifying surge of hope and excitement that envelops me whenever I feel like I have uncovered another piece of my sweet daugther's mysterious medical puzzle. It has become my purpose. My number one priority as I am certain that I know more about Avery specific brain and body functions than any one of her many physicians.
I only know a few things for sure. I am sure that Avery's autism and mastocytosis are linked. ( I have read dozens of research studies to lead me to this conclusion.) I am sure that she suffers from excessive neuroinflammation. And I am sure that neuroinflammation has contributed to the whole immune response condition that is Autism. So, what next?
Yesterday I watched Dr. Oz on a news program describe Autism as a neuroinflammatory response. This may not seem like a big deal, but in traditional western medicine, most physicians have not yet ascribed this inflammation as a primary contributor to a child developing Autism. Most physicians have also not made it their mission in life to figure out a way to get their effected child back. Anyway, this led me to my search for natural ways to treat such inflammation. This is WHY hyperbaric oxygen therapy is HELPING Avery. It treats inflammation and improves oxygenation of the brain and other inflamed organs. So what else can we do???
Dr. Oz, and most DAN doctors will tell you to look for certain triggers that cause an inflammatory response. Well, for my daughter, her whole body is an inflammatory response. Mastocytosis, especially extreme cases like Avery, is by definition a constant reaction. So, at all times, her excess of mast cells and mast cell tumors are releasing cytokines, which in excess are neurotoxic in that they create a vicious cycle of inflammation which her body never has the chance to recover from. Inflammation can be a blessing or a blight. It is a critical part of the body’s immune response that in normal circumstances reduces injury and promotes healing. When it goes awry, however, the inflammatory response can lead to serious physical and mental problems. Mental problems like AUTISM.
Now, knowing that almost anything can cause my daughter to have a masto reaction, how can I impede or prevent the inflammatory response in several types of cells outside the central nervous system? This led me to several research studies examining how to treat brain inflammation resulting from other autoimmune disorders such as parkinsons, Alzheimer’s, diabetes, and multiple sclerosis. My research led me to several brand, spankin' new studies that indicate specific flavonoids, luteolin, quercetin and rutin, are reducing inflammation and improving cognitive function in brain inflammation!!!!! Woooo hooooo!
Following my discovery, (at midnight I might add) I immediately found out how to get such flavoniods absorbed into Avery's body, any side effects and so on. I know it seems silly, and by no means do I actually believe we can CURE Autism... but if we can help her brain, even just a little bit, so her quality of life can improve, then I am all for it. I will research until the end of time. It seems like every cell in Avery's body is impacted by Autism. Her central nervous system, her neurotransmitters, her significantly impaired motor, language, social and cognitive skills, her feeding, her sensory system, her health and so on. It is astoundingly overwhelming.
As much as I write on this blog about the unconditional love Avery has shown me, about how Autism has changed us for the better, and how regardless of her capabilities I will love and support her all of my life.... not a minute goes by that I am not aching and desperate to help her. To see that light come back in her eyes that started to dim when she was one and half. Call me crazy. Call me obsessed. Whatever you want... but I am figuring it out. Little by little, one puzzle piece at a time, I am figuring it out. God help me... but mostly, God help her.
For a link to Dr. Oz's description of Autism please go to
Thursday, October 1, 2009
I decided last night to form a team in Avery's honor to walk for Autism in the Dallas/Fort Worth annual Walk for Autism Speaks. I vacillated as to whether or not to legitimately create a team, as I didn't want to seem like a charity case or bother too many people to donate money.... because if you are like us, most people are barely getting by these days. But in talking to some dear friends I decided to bite the bullet... and do so in the name of support and awareness more than fundraising. Not that Autism doesn't need all the fundraising it can get... but like I said, most of us are barely getting by these days.
My decision was swift once I really sat down and thought about it. Avery deserves words of support and encouragement even though she can's speak them. Avery deserves attention even though she often can't seek it out. Avery deserves personal rights and advocacy even if she doesn't know it, and Avery deserves compassion, love and awareness... lessons she teaches us everyday in her own unique and special way.
She deserves more.
When I read words like "every 20 minutes another child is diagnosed with Autism" my heart sinks. I literally feel a lump in my throat and a pulling at my heart. When we heard those words, though we already knew it, we became different people. In that instant. Her severity has moved from "it looks pretty mild" to "well, maybe she is more on the severe side" as she moves forward, lost more developmental skills and drifted further into her own world.
She deserves more.
As we drive her to school at the crack of dawn, then onward to therapy every afternoon and even on Saturdays...
She deserves more.
As we dispense countless medications, supplements, spend hours in a hyperbaric oxygen treatment chamber, search for diapers large enough to fit her, and time and time again help her remember simple tasks like not throwing her sippy cup and trying to use a fork.
She deserves more.
As we long to connect with her. Wait for her to look us in the eye. Make attempt after attempt after attempt to "play" with her, and one day... maybe one day, hear her words again.
She deserves more.
She deserves to be heard. To be understood. To have the same benefits and rights that healthy kids have. To have fun. To connect with us. To share with us.
So I formed a team on the Autism Speaks website to walk for her. It is so simple, just a short walk, but at least it gives me one more thing I can do for her. To do right by her. It gives you all something too. Even if all you do is look at her team page, and remember how devastating it can be to lose your child into this neurological disorder...it gives you knowledge. So next time you see a little kid having a tantrum, not following directions, not responding, wearing diapers though he seems to old, or not looking or talking to you... you will remember. Remember Avery. She deserves that.
Autism Awareness is why I will walk. Avery deserves it.