Happy Monday Revolutionaries! We’d be remiss if we didn’t thank everyone for giving us such a warm welcome last week! The excitement of our followers and Facebook friends is what this Revolution is all about. Well, that and insipiration. Today’s post gave us all a boost of inspiration and it’s from our very own Jerry….
I often won
der where she lies on this spectrum. I certainly know where she was seven years ago and that place wasn’t pretty.
I was quite the clueless mother back then. So what if she wouldn’t give Bradley a moment’s notice as he tried to kiss her? I suppose Elmo is really more interesting than six firemen in the living room dressed in full gear. Well, she really isn’t interested in answering to her name unless there’s a “do you want a cookie” attached to it.
Those might be humorous, but having her disappear with the pinwheel at a street fair, lost in a sea of people as she stimmed on the swirling colors in the thirty seconds it took for me to a get a dollar out of my wallet, was not. Neither was banging her head on the refrigerator.
The analogy I’ve assigned to getting our diagnosis of an Autism Spectrum Disorder has always been the cast iron skillet over the head. I never saw it coming. Ignorance is bliss, I suppose. My thrust into a not-so-blissful-existence happened at my dining room table on July 29, 2005.
Over the years we’ve been around the block in terms of treatments. Our current protocols include homeopathy, low dose oral chelation and neurofeedback. But we’ve been through many, many more. Injections of Methyl B12, Hyperbaric Oxygen Treatment, Intravenous Chelation, Phyosphytidalcholine, Glutathione.
We have a fully verbal well-behaved child who tends to get in arguments with Daddy when she doesn’t get what she wants. If she wants to call a friend, she does. She gets jokes. She has found her passion in painting and drawing and takes a class at the local art center. This summer she’s going to a new camp where she’ll focus on visual arts in the morning and creative writing in the afternoon. She reads chapter books and has figured out how to get the answer in math. She has a few friends. But I’m her BFF.
We’re off from school this week, so we get to do some special stuff. We’re headed for our second visit to American Girl Place for lunch and some spa work on Kanani’s unruly hair. We’ll chitchat at the table with the help of the conversation starter box. And grandma is coming with us. Grandma. That might be my clue we’re approaching typical.
Jerry
Thank you so much for your story. They say that recovery is a marathon and not a sprint, but it is hard to keep that in mind when you see typical milestones come and go. Your story has reminded me to keep my mind in the present and my eyes on the horizon. The things you describe doing with your daughter now are things I have dared not let myself hope for, lest I be let down. Thanks for reminding me to stay strong.
Carlin – I’ve been there. I still am, at times. We need to keep moving forward and get every bit of typical out of our kids so they can have a shot at a fulfilling, independent life.
Hi Kat –
I know the devastation. I am sorry you and your child are hurting, but there are so many options out there for help. We have a post coming up tomorrow morning about that.
We got the diagnosis at 2y4m and she’s turning 9 next month. While I’d love to think we are fully recovered and out of the woods, so to speak, we are not. There are still residual issues including perseverations that we’re addressing.
That you say YOU are more knowledgable and will make sure her new doctor stays on top of everything is key. A well known Autism dad, whose son recovered via chelation years ago, said, “No one is going to recover a child except their parent.” Doctors are helpful in certain circumstances, and the good ones are worth their weight in gold, but WE need to know what our kids need. Please talk to other parents about what they’re doing with their kids, what is helping and what is not, what tests to have the doctor run and general options for treatments.
I hope you see wonderful results soon. We have come very far since 7 – there is hope and support.
How old was your daughter was diagnosed and how old is she now? My daughter was 18 months at diagnosis, and is 7 years old now. We did DAN! For 2 1/2 years with some success, and NIDS for the past 3 years, which turned out to not be helpful for her overall. We are once again starting over with a new doctor who I am hoping can get her back on track. I’m devistated over this. She’s so smart, and we know she’s in there just wanting so much to be pain free, and free of what has a hold of her. At least now I am more knowledgable about all of this, and will make sure her new dr is on top of everything.