It's Been a While

I had a conversation with a photographer yesterday who read my blog. I realized I haven't written here in a long while. I am still modeling and traveling, albeit sparingly, but most of all Aidan has made tremendous progress. He now has a very large vocabulary, he reads books and knows/reads 57 sight words. When I discovered he was reading I dropped to the floor and cried. My little man continues to defy me, our family, and doctors. Here is some video that I took of him recently:

Little Swimmer Part 2

Aidan swam the length of the pool (75 feet) several times today. This is a breakthrough. After a year and a half of swimming lessons he's a little fish! I am a very proud momma.




https://www.facebook.com/pages/Fragile-X-Awareness/

Little Swimmer

Aidan is now swimming on his own. It's taken a while but at age 5 1/2 (6 in 2 weeks), he has accomplished something many people including myself havent;



It's mommy's turn next.

Mr Wonderful

- Mr Wonderful Ilford Delta 100

Fragility

Aidan was evaluated in January by a psychologist and she also interviewed us a month before that. In combination with that, and the other evaluation he had two years ago and all the tests/reports from teachers/therapists etc the results are he isnt "autistic enough" to be labeled with Autism. Basically he is a very sweet, caring, and social boy who makes verbal and eye contact with everyone so that wont have enough of a big impact on his socialization and life to be labeled autistic. - More on that at the end. He needs to be treated as a child with Fragile X Syndrome which indicates he has delays in communication, speech, and language.

His i.q. is 41. He is Moderately mentally challenged on the levels of : Mild, Moderate, Profound, and Severe. His mind is that of a 2 1/2 year old. The recommendation for progression is one on one care in school, at home, and at therapy. Problem with that is the integrated school he goes to is a giant piece of shit and we dont think there is an aid with him while he is there a lot of the time when it's crucial he needs this otherwise he is just flapping his arms and going around in circles with overload. He needs direction and a small classroom so the good news to that is, he has been accepted to a school (for the fall) that specializes in developmentally disabled kids. The classroom has a maximum of 8 kids so he will get the aid and attention he needs. So now that we have a foundation to work from the actual work starts.

I'm indifferent about this simply because of the fact we've been told he was Autistic for 3 years now and now they are saying basically; "yeah well pretend that never happened." So I need to ignore what has been shoved down my throat and know that he is just moderately mentally challenged which is a great thing but it's a transition. Also we will continue to argue with the school and pay visits to them making sure he has an aid there. It's maddening how broken the school systems are and they only really care about money.

Aside from that it's a productive and new day. He can only go up from here and I couldnt be more thrilled. I have some personal thoughts that i'm going to keep to myself but clarity has been achieved and it feels like we've broken through the proverbial brick wall.




My sweet little bundle of joy.

Happiness is Contagious

There have been some personal changes in my life, that while feel very right and freeing, have a bit of melancholy sprinkled in there as well. Such is life right? Changes are a good thing, but it doesnt mean they come easy. I suppose if life were easy we'd all be quite bored to death.

In my 30 years on this earth I have met some amazing, trying, and interesting people for good and for worse. Beating ones self up over a decision out of love isnt a good thing to do. Most of us feel, love, and learn and that last word is really the key in evolving. Sometimes they are great decisions and sometimes they arent. The point is to learn what works for you and makes you happy.

Tomorrow is a very important day. Aidan's father and I go to his psychological evaluation results to determine how much progress he has made and where he fits in amongst others. Whatever the outcome is, we know we've done and continue to do everything we can to help him grow and learn and we are proud of who he has become and the amazing progress he has made in the past year. I have to remember to be positive while being realistic as well. It's a difficult balance but when I see Aidan's smile and hear him say new words all the time including "gremolata" from Rachael Ray. I just smile and feel that amazing feeling that is, unconditional love.



I looked up one afternoon and noticed he decided to put a bowl on his head because he thought it was funny. Laughter is contagious... so is happiness.

Beauty of Decay

I'm currently sitting on my couch post snuggling with my little guy while watching his 'girlfriend' Rachael Ray on a very cold snowy Columbus Saturday. I plan on shooting a roll of him today.. it's been far too long.

My upcoming travel plans include much warmer places than Ohio.. North Carolina, Tampa, and Santa Fe/Albuquerque. New Mexico is one of the only 7 states I havent been to, so I am thrilled.

Until then i'm headed up to Detroit to shoot in some of the beautiful abandoned structures there. I rarely do self portraits outside of my own bedroom or hotel room so this will be a new challenge for me. Not only do I find beauty in these spaces, but it's also a little saddening to see a fine American city in decay almost directly due to the auto industry. However, there is a a few good art communities around that area that find beauty there, so who knows what the next 10-20 years have in store for Detwah.

This image is 5 1/2 years old. I was 8 months pregnant modeling in an abandoned mental hospital in Pittsburgh. It's also a very special moment as Aidan was kicking me....



Ethan Long 2005