ECI Update

While we wait for Deacon's 24 hour EEG (scheduled April 4th), we are definitely utilizing his Early Childhood Intervention services! The picture above shows some of the goodies they have given us for Deacon to use. The item around his neck is called a chewy tube and is basically a baby chew toy to keep him from gnawing on his clothes while he is teething. On his hands are thumb splints. One of the things we have learned is that many children with neurological issues have a habit of tucking their thumbs inside their fists, which interferes with fine motor skills like pinching and grasping items. The splints keep him from tucking his thumbs in, but allow him to hold stuff. He is supposed to wear these at least 8 hours a day, but he actually likes them (he must think they are another item to chew on, and with 2 new teeth arriving this week they have come in handy). We have already seen improvement in him holding cookies and his bottle.

Deacon's newest service, Vision, is provided by our school district, but they keep in close contact with ECI. We were given district enrollment paperwork and it feels so strange to be filling it out for our 1 year old, instead of our 5 year old!

I have heard fabulous things about his VI teacher, who services some children at Deacon's daycare, including the directors grandson. She already knew who Deacon was, and has peeked in on him a couple of times before he was officially added to her caseload. Last week she did her formal observation and sent me an email about her first impressions:

Wanted to let you know that I worked with Mr. Deacon this morning. First of all, he is so precious! I worked with him in the "barn" and noticed some great things. I will, of course, write up a report that I will send to you, but wanted to give you some quick things that I noticed. First, I noticed that peripheral vision on left side seems somewhat delayed which could account for the bumps on the head most often on that side. [It amazes me that she said the same thing the neurologist told us about the spasms happening in the right side of the occipital lobe, where left vision is effected.]

Next, he appeared to be most interested in toys with lights when the overhead lights were off. In this unfamiliar environment of "the barn" he was not quite as willing to walk around like in his familiar classroom. That's okay and can work towards his benefit. Since he's not sure of new environments, this behavior will keep him safe....that smart boy has figured that out.

Also, I noticed a sudden "drop down" where he was standing and got on almost all fours in a very quick motion. I don't feel like this is balance, but him trying to figure out where he is in space and feeling most comfortable with this constant contact (think of being on a cliff and looking over, you would drop to all fours to keep a better sense of where you are...I'll explain this one in person).

When she called, she said that Cortical Visual Impairment is a spectrum and he appears to be on the better end, especially in that he is walking and many kids with this don't. She also told us that with intervention other parts of his brain can learn to compensate for his vision and we will see a big improvement.

She will also be referring Deacon to the Orientation and Mobility Specialist, who helps Deacon learn to move around safely. If he qualifies, he will be up to FOUR visitors each week! I can't even begin to say how completely grateful we have been to this program and the information and suggestions they have given us already.