Tuesday, July 28, 2009
Wednesday, July 15, 2009
I've really been moved by the horrible story of Byrd and Melanie Billings who were killed last week. They were well off and, instead of spending money on themselves, used their resources to adopt children - mostly those with special needs. They left 17 children behind. Our family had "special needs" thrust upon us. The Billings family volunteered to have their lives changed forever, to spend the rest of their days making a difference rather than enjoy the good life. Knowing what it really is like, I really can't fathom that decision, which makes me realize how far I still am from being Christlike.
May their family find healing and comfort.
Posted by Ellen at 1:28 AM
Friday, July 10, 2009
Wow, it's been a long time since our last post. Frankly, I've been kind of discouraged about posting, given the constant subject of thought and discussion in our household. But a lot has happened. I'll try to post about other things too.
We made a decision that we felt really good about and has been really good for Sonja. A couple weeks ago, we started her on very expensive 20-hour-a-week applied behavioral analysis (ABA) therapy. Some insurances cover it; ours does not, automatically, at least. We are in the process of applying and waiting and possibly appealing. But if it doesn't, we are getting some miraculous help from some amazingly generous people in our lives. Believe me, if we owned a house or car, we would sell it in a heartbeat. The best part, though, is that we are at peace. We know it's what she needs.
Basically, this therapy is very evidence-based and data-driven. Sonja has two therapists who work with her during the week and a PhD who assesses her once a week at our team meeting to set the curriculum for the following week. It's hard core, which is what she needs. They teach skills over and over until she gets it. Her physical imitation skills were basically nonexistent. The very first day she learned clapping by imitating. Two weeks later, she has generalized it by following the actions during song time in nursery (generalizing meaning she has been taught clapping and patting her head, but in nursery she was stomping her feet and doing other actions not explicitly taught her). She is imitating me more as well. I can't emphasize enough what a huge step this is - imitation is how children start to learn. She has also learned a lot of words, also through repetition (eg, several objects on the table and she has to "give me the spoon" or whatever they ask). She doesn't pass a skill until she gets it 100% two days in a row. Her verbal imitation is really good already, so it's just a matter of working on her language processing and teaching her to listen to each part of a sentence. She's learning English as a foreign language right now, basically. I wish we had done this sooner. But she's making really good progress. She loves it too, because she gets to watch Curious George and eat M&Ms as a motivator between tasks.
I've also added something from my old life back in - I'm going to a book group once a month and reading the books! Actually, I've never belonged to a book group, so I get a little too excited about it. I haven't read a book in like a year that didn't have the word "autism" in the title and suddenly I've read a book and two novellas. So exciting!
Natalia is imitating sounds and she understands and is trying to say "thank you," "again," and "all done." She points to Mom and Dad and says "Dada" for both of us. She will also twist her fat body back and forth when you tell her to dance and she will stop immediately when you tell her to stop. It's hilarious. It's also odd because, at almost 3, Sonja is also learning these skills, including pointing (it's taking awhile - her motor skills are behind) and following verbal instructions. I'm just glad both of my girls are progressing, albeit at different rates.
Very cute picture alert! (in no particular order)
Natalia's rule number 1: Mommy's pants are not a prize to be given up lightly.
Rule number 2: Mommy's finger is not a prize to be given up lightly. Actually anything to do with Mommy's personage is not to be let go of under any circumstances, especially hair or pinched bits of skin:
Sonja playing with playdoh again:
Natalia learning to walk after bath time:
Three cuties at the Lincoln Park Zoo:
Natalia the clown. She actually kept it on for about 3 second before taking it off:
This picture is blurry because I had to snap it quickly. When we offer her a spoonful of green beans or peas, she snaps into this tragic pose until she thinks the coast is clear. But it never is. We make her eat them anyway:
A meeting of the minds - sharing blades of grass. Check out that muffin top (on Natalia of course). We can't get any shirts to cover her belly, poor thing:
Sonja in Natalia's chair. After Natalia gets out, she gets in and requests the "seatbelt" to be put on. She is definitely jealous of the attention paid to Natalia at mealtime:
Natalia asleep. Her mean parents kept her up after 6:30:
Natalia loving attention from Grandma:
Sonja's first pigtails. This took me awhile, but she was pretty patient with me:
As mentioned before, Sonja likes to sit wherever Natalia sits:
Baby with Milk Jug: A Study
Posted by Ellen at 2:16 AM