Late August Ellie Update

Cydil's note: this is a little lengthy, but perhaps I can entice you with the promise of a photo at the end. :-)


We are quickly approaching the end of Ellie's first 6 months of therapy! What that has meant are assessments of her progress and establishing new goals for the next six months. Yesterday we had a lengthy meeting with her therapists to discuss how we would divvy up Ellie's therapy units between them for the therapy period which will go until March, based on our goal's and assessment of her current needs. While she has shown great leaps in the physical arena, the glaring hole is her lack of speech (she has yet to say any words, wheras most children her age have a vocabulary of nearly 200 words and speak in 2-3 word sentences). However, under our current plan, she is only receiving one hour of therapy per month.


Ellie's Speech Language Pathologist (SLP) along with our pediatrician are pushing for one hour of therapy per week. After redistributing our units, we will be able to increase speech to 2.5 hours per month by taking away 30 minutes per month of therapy from PT, OT and Developmental Intervention. The therapists' assessments all demonstrated that Ellie still has considerable ground to cover in ALL areas to catch up to her age group (no surprise to us), but until we know that she is understanding what the therapists are trying to teach her, to a certain point our efforts could be futile. SO, we are in the position of requesting more therapy units from the state so we can restore the hours we 'borrowed' plus add another 1.5 hours of therapy to speech.


The process of requesting more therapy credits requires submitting a file full of lots of supporting documents and records. I feel sorry for the person who has to wade through all of it! I just faxed 18 pages alone to our primary service coordinator. And that doesn't represent what each of Ellie's therapists are collecting and submitting!



In spite of this mountain of paperwork, there is the good possibility that our request could be clinched if we would get Ellie tested and assigned a 'label.' Initially this seemed a bit scary -- driving to Louisville to meet a huge team of specialists who would perform a lengthy battery of tests on Ellie to determine what might be the source of her global delays. Does she have autism? Does she have PDD (pervasive developmental delay)? etc.


But then, when sitting around the table in our dining room with Ellie's therapy team (doesn't that sound supportive?), we all agreed she's probably still too young and it's just too soon after her adoption to rule out lingering effects from the deprived in environment in which she spent the first 18 months of her life. The therapists unanimously agreed that they didn't believe she had autism (an initial concern based on her poor social skills in establishing consistent eye contact). However, given that she ages out of First Steps in less than 10 months, one of her therapists expressed concern that if we waited much longer, First Steps may not consent to provide the testing (this kind of testing is not covered by insurance and would be very expensive). While we don't have a pride issue about Ellie being diagnosed with a particular disorder, we are/were a bit concerned about how it could affect her future (particularly if we were to move to a different state). They assured us that if she were given a label now that later appears to have been inaccurate, it can be 'unstuck' without denying her educational opportunities down the road. On the other hand, such testing could also be reassuring in that it could 'rule out' certain disorders. Decisions, decisions. We'll keep you posted...


Our little celebrations this week have been the fact that Ellie has taken to eating some new foods, namely cracker 'sandwiches' (the kind with peanut butter smashed between two crackers), Subway's chocolate chip cookies (she ate 2 during a lunch meeting on Monday), a chewy Quaker granola bar, and macaroni and cheese! Those represent substantially different textures and larger foods than the dry cereals and goldfish crackers that have comprised much of her solid food repertoire. We are amazed and excited that she has expanded her palate so substantially in such a short period of time. Her acceptance of a toothbrush still seems so far away, though! Nevertheless, hopefully we're chipping away at some of this oral defensiveness that she has clung to for so long.


On a slightly different front, during PT yesterday she took 21 steps over a distance of 16 feet! (Yes, for the sake of being official, our therapist uses a tape measure to record these kinds of things!) Then, this afternoon she automatically rolled over on her tummy to slide down the stairs! This has been the biggest obstacle in getting her to master this important skill. From that point she was at the bottom in no time and her dad was calling her 'Rocket Ismail.' Until today, she would approach the top of the stairs, bend over while standing, with her hands on the ground and bottom in the air, and attempt to go down them facing forward. I don't know how to describe it other than SCARY! Of course, we immediately would turn her around and put her in the right position -- but you could tell it didn't feel natural to her. In addition to the stair thing, she also continued to catch a ball tossed at her while standing, and exhibit something called 'joint attention.'

Finally, her last major accomplishment worth reporting occurred during speech therapy Monday. Her therapist presented her with a variety of wooden puzzles with cutouts for different shapes like circles, squares and triangles to complete a picture of a train engine, flower, butterfly, bird, etc. After just a little bit of coaching, Ellie picked up two wooden circles and placed them in their proper places as the train wheels. I know it may not seem like a big deal, but it's been something we've been trying to get her to do for a LONG time. After we went crazy with praise, she did it again. And again. And again. We gave her another puzzle and a variety of shapes. Again, she picked up the circles (one for each hand). This time, there were three circle flower petals. She put her circles in petals one and two. Then moved them to fill the second and third petal, then moved them again, but refused to pick up a third circle so all three petals were filled. What does this tell us? Ellie has shape differentiation (we kind of already knew this), but she is also beginning to use more toys functionally (verses banging them together, dropping them on the floor, throwing them, etc.). Needless to say, the wooden puzzle set is on order with Amazon.


Whew! I didn't mean for this to be so wordy! Nathan is out running an errand with Ellie which gave me a little bit of time to finish this up.


Ellie with Monica at the Activities Fair on campus yesterday...