I've been having a bit of a difficult time writing lately. It's not that stuff isn't happening, it always is. I am kind of in autism mommy burn out. I am feeling discouraged, exhausted, and kind of lost. I am not sure what steps to take next.
Jack's study drug hasn't really done much yet- he continues to be more emotional (oh joy!), but that's about it. He is still sleeping pretty well. It hasn't even been a month yet. So I am waiting.
Nate has been regressing again. Not using many words at all right now, except more, and a couple others. He is very stimmy, always very stimmy.
As I continue on this journey with my beautiful boys it becomes more and more obvious why the puzzle piece was chosen as a symbol for autism. The problem is so complex, and the answer is not the same for any two children. I have watched so many kiddos pass mine by, kids who were born way after Nate asking me why he's not talking. Kids starting a gluten free diet and "waking up". It's hard, it's just really hard.
We have been gluten and dairy free for almost 2 years. I have been giving Nate shots for a year and a half- that's a miracle thing for many. Not us. Curcumin? A year. not much. Yeast treatments- many- temporary results at best. Am I supposed to keep Nate on nystatin for the rest of his life? I just feel like I am missing some huge piece of this puzzle and I don't know what it is. He didn't show any toxicity re: heavy metals when we tested, chelation isn't going to really help. The therapies have been consistent so it's not that.
I want to be that mom who sees her little boys start to thrive. I want to have an aha moment and know that things are going to improve. And I feel like it's my fault that it's not happening.
Jack's study drug hasn't really done much yet- he continues to be more emotional (oh joy!), but that's about it. He is still sleeping pretty well. It hasn't even been a month yet. So I am waiting.
Nate has been regressing again. Not using many words at all right now, except more, and a couple others. He is very stimmy, always very stimmy.
As I continue on this journey with my beautiful boys it becomes more and more obvious why the puzzle piece was chosen as a symbol for autism. The problem is so complex, and the answer is not the same for any two children. I have watched so many kiddos pass mine by, kids who were born way after Nate asking me why he's not talking. Kids starting a gluten free diet and "waking up". It's hard, it's just really hard.
We have been gluten and dairy free for almost 2 years. I have been giving Nate shots for a year and a half- that's a miracle thing for many. Not us. Curcumin? A year. not much. Yeast treatments- many- temporary results at best. Am I supposed to keep Nate on nystatin for the rest of his life? I just feel like I am missing some huge piece of this puzzle and I don't know what it is. He didn't show any toxicity re: heavy metals when we tested, chelation isn't going to really help. The therapies have been consistent so it's not that.
I want to be that mom who sees her little boys start to thrive. I want to have an aha moment and know that things are going to improve. And I feel like it's my fault that it's not happening.
No comments:
Post a Comment