Thursday, January 31, 2008

I wanted to say...

Brady's ABA center has a receptionist who is more than a receptionist. I think of her as a member of Brady' team cheering him on and praying for him. I don't think she realizes (I think now she will) how her words have picked me up and supported me when I needed them. She has seen me in moments of sheer joy at his accomplishments and she's seen me in tears overwhelmed and falling apart. She genuinely cares about all the children who attend the center and she cares about the causes of and treatment of autism. She's always reading a new book, article, or study. I'm starting to worry about my own research because sometimes she's a few steps ahead of me. -chuckle-

Anyhow Michele....thank you. I'm thankful for you and your participation in Brady's recovery.

~Angela~

Wednesday, January 30, 2008

How cute is he?


I love this picture. This is the night I bought the glasses for Brady to get used to. He actually smiled at first but of course quickly yanked them off.

Tuesday, January 29, 2008

Firstly I have to say that we are so lucky to have Reaching Potentials. Today I had a talk with Mrs.G and she is going to modify Brady's schedule a bit to help us with the costs. What a relief! Thank you!!

One of the things I love so much about them is that they truly and honestly love Brady. They hope and pray for him just like we do. They are invested in seeing him succeed. They've always been here for us. I completely trust them with Brady and know he is in loving (but stern when need be) hands.

Another thing is that Mrs.G runs an excellent program. She has high standards for our therapists and knows how to pick the right ones. I always joke because not only are they awesome hard working girls but they are darned pretty too.

Exciting things coming up!!

On February 25th Brady is starting HBOT at Dr.Mumper's facility The Rimland Center. We are really excited. The studies yielded some really exciting results. We're hoping Brady responds well.

On March 13 Brady has an appt scheduled with Dr.Kaplan. He's a behavioral/developmental optometrist. He has been working with children on the spectrum for a long time. Brady has strabismus or commonly known as lazy eye. I hate that term because his eye is *not* lazy. At 18months Brady had surgery to align the eye. At first it seemed to work but then his eye wandered off again. Not only that but Brady changed a lot after his surgery. I believe that Brady responds very negatively to anesthesia. The static concept is visual dysfunction is a structural problem. A more accurate paradigm recognizes that vision is a dynamic process, which controls the action of the entire body and , in turn, is influenced by feedback from other sensory systems.

Many of Brady's behaviors are most likely attributed to his vision. He has lots of visual stims. He likes to look at things out of the corner of his eyes, or odd angles. He moves things in unusual ways to look at them. Loads of toe-walking. I really feel (and hope) that Dr.Kaplan is going to help Brady in a huge way. We are anticipating Brady will get prism lenses. He currently has a program in which he tolerates wearing glasses in his ABA program. I'm so worried he won't wear
them.

Sunday, January 27, 2008

Oh the fights we have...

Sure sometimes we have the same typical fights typical couples have. But we're not typical. I really think we quit being typical when we found out about Brady's diagnosis. We never get out together, unless we have a kid with us. We nearly always talk about stuff autism related. Right now autism is the driving force in our life. I mean it impacts everything about our life. Getting out just doesn't happen. I often make a joke about Sadie's surprise conception and birth. "It's the only thing we do for fun anymore." That's when anyone has the energy.

Before I tell you about the argument I must tell you that Brady still drinks bottles. At 3.5 he will still drink them and quite honestly we're thankful. Otherwise we wouldn't be able to get all his supplements and protein in him. What food he does eat contains practically no protein. Right now he's refusing to drink his juice cups. He'll only drink bottles of rice milk. He'll flip flop again at some point. Typically I make up all his bottles for the day in an assembly line filling each one with his assortment of supplements. On the weekends however I don't and Robin typically gets up with Brady in the morning. At some point in the day I asked Robin if Brady had gotten his anti-fungals or DMG. Then an argument insued about how I didn't have a chart on the fridge and I argued he should have asked. At that point in time it was too late in the day to catch up. It's not like I've ever forgotten. It's just so easy to get mad at each other over such things.

I am thankful for Robin though. He doesn't ever flake out of changing a poopy diaper and we have LOTS of poopy diapers in this house. He is the one Brady is always dragging around. I can't tell you how many times a day Brady *asks* (nonverbally of course) Robin to swing him. Or pick him up so he can get something out of reach. And sometimes quite frankly it gets old being dragged around. Every time Robin sits down at the computer to try and draft a letter to the school Brady is grabbing his hand off the mouse. It's hard to get anything done in this house between Brady and our resident high needs baby Sadie. And there is always a letter needed to be drafted, or a book that needs to be read, or something needing washing or researched. Sometimes Robin and I feel like we could drown in our list of "to dos". It would take 6 parents to do our job. I certainly know it takes 6 salaries to cover what we need to do.

Thursday, January 24, 2008

HIS BIG BOY BED!!

Brady slept in his crib with a crib tent until recently. We thought he'd be in his crib for some time because he seemed cozy and content in there. One night two weeks ago on a whim I encouraged him to lay in his twin bed as he was getting ready for bed. It was so cute. He crawled in and then got this big old smile on his face like........this is cool. He has been sleeping there like a big boy ever since.

Now this kind of made me sad. I sometimes wish that Brady could be this little boy forever. Robin however was happy. He wants Brady to grow up like he should be. Perhaps the future just makes me nervous. I have so many hopes and plans for him.

Now I need to get him an organic mattress.

The financial woes get worse!

Anyone with a child with autism involved with ABA or biomedical can relate to what I'm about to share. What I really really need is MONEY!! It's so unfair that next to nothing to is covered by insurance. We've been lucky in that the only real help we've had has come in the form of beautiful scholarships from the center Brady attends for ABA. Without those scholarships I don't know where we'd be. I guess deeper in the sea of debt we are currently treading in. We've been treading for awhile now and we're getting kind of tired. But what are we going to do? There's nothing we can quit. Everything we're doing for him right now is working!

See today has been particularly difficult. We've been lucky enough to have financial support in scholarships for many many months now. Unfortunately those funds are gone and we are now in a position in which we need to pay full price. I ask you. What would you say if someone told you that you needed to pay nearly $900 a week for your child to have a future? That is the question before me today folks. And mind you that's just for the ABA. What about the costs of the biomedical treatments we are providing Brady? The special foods? It all adds up to a scary sum of money.

We are presented with such things all the time. This is one of the most difficult things about autism. You are forced to make such huge important decisions for your child all the time. Not every once in awhile like with typical kids but all the time. It's exhausting and scary. You don't always know what the right decision is.

All we know is that Brady has made amazing progress in his program and we have to keep keeping. If only we could win the lottery.....