Wednesday, March 25, 2009

Don't Force Their Hands

We have been helped by innumerable medical personal over the years. The sheer number of them has been amazing to us and that they take such good care of our little boy has been such a gift. We know that we do not agree with all the lifestyle choices, religious beliefs, or personal opinions of the doctors, nurses and other medical people that have taken care of our son but we have respected that they worked their hardest and did their best to take care of him in his every need. Everyone of them regardless of their faith or creed has been prayed for by our family and thanked profusely for working so selflishley to help our son. Our doctors, nurses and pharmacists are good people who should never be forced by law or policy to go against their conciences to preform or dispense something with which they disagree. President Obama is in the process of rescinding a regulation from late in the Bush administration allowing health-care workers to refuse to provide services based on moral objections. What many do not realize is that the required public comment phase began March 10 and ends April 9. It is also very difficult to find the link to provide such comment. So if you have an opinion on this please click on "Comment Here" below and tell them so. If the advocates of choice were honest they would let our doctors, nurses and other medical professionals exercise their choice too.

Comment Here!

Bubble Egg Cases?

What hatches from these? I keep finding them on my floor and so I wonder what is coming, or maybe what laid these....


Ah...this explains it.


And when he is done with that job he is prodding on the help...poor dad, he is cutting up 10 pounds of onions for French Onion soup for me to take to the Mamapalooza* this weekend and I guess John decided that he just wasn't cutting those onions fast enough.


Um yes, soup will be left for the help. And a mamapalooza is a get together of the mommies off of the Looper list, that whacky, delightful group of LCMS homeschooling mommies. So the guys are on their own this weekend and the mommy is going to be off eating chocolate and talking, talking, talking, eating chocolate, talking, talking, talking. I'm not sure what else we will do but eating chocolate and talking will surely happen :)

Sunday, March 22, 2009

Literacy and Your Deaf Child

I read this book because I have been wracking my brains and Mark's and anyone else who was willing to listen and think about it, about how do we teach John to read. Mark has been working with John on recognizing the different sounds that vowels make, John cannot distinguish the short sounds on their own, at least not enough to tell you which letter makes that sound, making it pretty evident that an off the shelf phonics program isn't going to work well as is, and whole word, well that's a whole different can of worms.

So what I gleaned from the book is this, no one knows why or how a deaf child learns to read. That's almost a verbatim quote and it gives this mommy no comfort whatsoever. The book also explains that no hearing device, aids or implants, corrects hearing enough that a child can acquire language to a high degree naturally like hearing children can. The book does however discuss what you can do to help your child learn to read, it holds teaching reading as teachers job, but anti-homeschool bias aside it has some really good information, things that I had not really thought out or hadn't thought out far enough.

The first thing it talks about is something that we learned a long time ago there is a big difference between language and talking. Language acquisition for hearing children without cognitive impairment comes as naturally as breathing. Just being surrounded by people talking teaches them to do so, and doing things intentionally only makes things better. For deaf kids of deaf parents language acquisition is also natural, they are immersed in ASL from the moment they are born and learn it just like hearing kids learn the native language of their parents. Aside from cognitive inability and such, the kids that have the worst time of this are deaf kids of hearing parents. Speaking as a hearing parent of a deaf kid this is a big mountain to climb.

The author defines 3 levels of literacy, functional meaning that you can read enough to know what's in a box or which sign says stop, cultural meaning that you can read enough to get what's going on around you and interact with it on a basic level, such as reading a newspaper article about a sports team and understanding what happened to the team. The last category of literacy is critical literacy, the ability to read and comprehend language to such a degree that you can not only interact with it but use it to change your surroundings for the better, to impact your society. That is the level of literacy that Mark and I so thoroughly enjoy and that is our hearts desire for John, second only to his remaining in faith to the end, critical literacy is really our one and only educational goal.

The book talks a lot about what critically literate deaf people's parents did with and for them when they were kids. Lots and lots of intense, intentional language experiences. Mark and I have always talked to John, read to him and such, but according to this book we are just barely scratching the surface of what it is going to take to give him this level of literacy that we want him to have. I have to give this copy of the book back to the library, but will be ordering our own copy from Amazon, because it's going to need lots of rereads, lots of underlining, highlighting and notes in the margins. I wish we would have had the book on the day that we got the diagnosis of deafness, frankly that would have been oh so very much more helpful than all the info that we were given about oral-deaf education, a soap box that I'll try to stay down off of at the moment.

Monday when we go into Columbia we will be headed into the library for another title, one recommended by this author, another one which I am pretty sure I will have wish that I had 3 years ago: The Signing Family: What every parent should know about sign communication by D. A. Stewart and B. Luetke-Stahlman. John is so very smart, he can run electronic things such as the DVR remote, my cell phone and computer, he drives his chair in ways that tells me that he is watching and learning cause and effect and has great spatial awareness, just one look in his eyes and you know that you are dealing with a smart, smart little boy. The down side to all this is that John is trapped inside his body, not completely like an autistic person, but he has real problems with language expression. He can tell us what he needs and wants for the most part, he comes and gets us to show us things that are funny, and can express some feelings, that he loves us and that he hurts. He is constantly learning and we have had this debate for a long time whether we should concentrate on teaching him to express himself or fill his head with knowledge or do both. We've always kinda landed on the do both choice, but I am seeing from this book that while we need to be doing both we have got to crank up the work on expressive language way beyond anything we've ever even considered doing before.

I have times when I feel completely inadequate for this job, but I know that the schools can't give him what he needs, and while his therapists are doing a great job they too can't give him everything he needs for learning language to the extent that we want him to enjoy, it's up to us and by God's grace we will do the best that we can and rely on Him to help us through our weakness and inadequacies.

Thursday, March 12, 2009

Liturgical Slam Dancing


John loves screwdrivers. Not in a subtle, can leave them or take them kind of way, no, not in a I-sorta-like-those kinda way, I mean really LOVES them, like he can sniff them out or they call to him. No matter where his daddy leaves a screwdriver John finds it. He hunts through drawers, he scours bookshelves, he scans any surface where daddy was working and low and behold at some point he will find yet another screwdriver. What you can't see in the picture above is the screwdriver under the shirt, I'm not exactly sure what he was doing, but I know he was happy, the look gives it away, but really all I would need to know was that the child had a screwdriver in his hand and I would know that he was happy. The love affair with tools extends to any and all that daddy has touched and that John can find, but for now, his main squeeze is the screwdrivers.


Papa is always wishing that there would be more pictures of me. So here ya go, Mark took one for you. We love you!


Reload! Second only to screwdrivers is anything that is gun shaped and shoots a projectile of any type. We didn't even know that John knew where the bag of rubber bands was until we heard the drawer slam and the chair buzzing at high speed bearing a squealing boy, a bag of rubber bands and a rubber band gun. This boy was made for this daddy. John's favorite thing to shoot lately, the ceiling fan, the ceiling and any and all light fixtures, I don't know where he gets it, but I'm pretty sure we could have named him Mark Junior and it would have fit.

Well I know you're wondering what all this has to do with liturgical slam dancing. Being the stick-in-the mud liturgical nazi type Lutherans that we are it cracks Mark and I both up that John's doll and monkey take turns dancing to the hymns we sing during prayers at night. During Lent we are singing "On My Heart Imprint Thine Image" (see you can tell that we have that whole nazi thing going because it's Thine and not yours, but I digress) and while John's doll and monkey dance at other times and to other pieces of music, his favorite is for them to dance at prayer time. They do a little jig over here, a little wave over there, and then slam into the bed (or whatever surface we are saying prayers on that night), a jig, a wave, kick up the heels, slam, slam, imprint that image kid, imprint that image.

Wednesday, March 4, 2009

For Papa

John is doing great, seems to have weathered the UTI he was fighting all on his own. I just had to share this with you...and anyone else who needs a really good laugh for the day.

Sunday, March 1, 2009

180 Days and Fighting for More

Today John has been out of the hospital, and has had no ER visits for 180 days. As I remember the 1st year of his life he was in the hospital for about 180 days. This is quite a change, a pleasant one at that. Of course yesterday we found out that John is fighting a UTI, this is only the 3rd one in his life, which is pretty darn good for a kid with Prune Belly and with grade 5 reflux on one side - which means that for him urine flows too his kidneys just as rapidly and frequently as it flows from them. So far he's not spiked a fever and is fighting this at home. Cultures are cooking at Boone Hospital in Columbia, thanks to the on-call doc for our pediatrician who arranged that yesterday and we'll find out what they have to say. John didn't even have to go in for labs, he provided us a nice sample in the restroom at Sam's and his daddy so very nicely ran it over to the lab so that John and I could continue to enjoy looking at all the fascinating things that live in that building. Our directions are to bring him into the ER the moment he spikes a temp, other than that to hang out and wait to find out what's growing in the cultures to see what antibiotic he will need. We are hoping that we don't make that mad dash to the hospital, but kept him home from church this morning thinking that the last thing he needs is exposure to even one more germ at the moment.