A Funny Thing Happened on the Way to...

So I realized a couple of days ago that I haven't really shared much of the "entertaining" things that Kayla does. And then yesterday morning it happened...

I was sitting in the living room feeding John and trying to remotely get the twins ready for school. I sent Kayla to the bathroom (the reason now escapes me) and I was trying to keep an ear out for her to make sure that she stayed on task. Then I heard this little voice start singing, "Washed a lot plates in Memphis, Pumped a lit of pain down in New Orleans, But I never saw the good side of the city, Till I hitched a ride on the river boat queen. Big wheel keeps on turning Proud Mary keeps on burning. Rollin, rollin, rollin on the river. If you come down to the river, Betcha gonna find some people who live, You don't have to worry cause you got no money, People on the river are happy to give. Big wheel keeps on turnin Proud Mary keeps on burnin. Rollin, Rollin, Rollin on the river [this time complete with arm movements ala Tina Turner]."

When was the last time you saw a 3 and a half year old channeling the spirit of Tina Turner. Thanks Grandpop and Poppy for exposing our kids to such great cultural elements. She already identifies the Beatles when they are played over the PA at the mall. What next???

What the...?

So I woke up this morning to SNOW! Can you believe it? Not just flurries of little tiny flakes but big, fat golf ball sized flakes. The kids (especially Kayla) were so excited. All they could talk about was the fact that it was winter. I had the hardest time explaining that just because it was snowing didn't make it winter.

But seriously 8 years ago tomorrow Dave and I got married and it was 72 degrees and everyone was wearing short sleeves. Now today it was about 34 degrees and SNOWING!

The last time I remember it snowing here before Thanksgiving was like 86 or 87. I remember because my Dad had come up for Thanksgiving and we were at my aunt's house playing in like a foot of snow. Does anyone else remember that?

Well, it seems to have finally stopped and it only really stuck to the grass but still... what the...?

The End of a Tunnel

Yes, that is right. I feel like we have reached the end of one the many tunnels we have been traveling through. The carpet "guys" just left and we now have a carpet in our new PLAYROOM! Yea! I can't tell you how exciting this is. (Although some of you can probably understand.) The twins have been "living" in the kitchen and living room for the last 3 years and it is really driving us crazy. So now they have their own space and we get ours back! Now I can begin to really enjoy my new kitchen (that is a tunnel we have yet to see the end of). Also I can get my LR bookcases back when I empty them of kids books, videos, CDs and puzzles. We packed up all our (adult) books last year before doing the kitchen and I haven't been able to unpack most of them... yet! Let the reading resume!

Now on to the exciting task of moving and rearranging all their toys. I can't wait to see what we find hiding under couches and behind bookcases! With Christmas coming this is going to give us a great reason to purge.

It seems, though, that since we have lived here (3.5 years) there has always been a major "project" going on (either planning or implementing) and now I don't know what we are going to do with ourselves. What will we worry about if we don't have construction going on?? : )

Don't worry everybody I can think of at least a dozen tunnels that we have entered over the past 3+ years that we have yet to see the end of!

Louder Than Words

Amanda bought me Jenny McCarthy's latest book, Louder Than Words, for my birthday and I can't put it down. For those that don't know Jenny has a son who was diagnosed with autism. He also has a severe seizure disorder. But I digress...

When James was first diagnosed I was definitely feeling overwhelmed with info and underwhelmed with support. I was watching how Autism Spectrum Disorders (ASD) had taken over the front page of the news. It seemed like to be hip and cool on the morning show circuit you had to do a special at least every 2 weeks on ASD. The View even devoted an entire episode to ASD. But those weren't really for me. I knew pretty much everything they were saying and I understood that they were just trying to raise awareness. But I became increasing jealous when I would see celebrities come on TV to talk about how their child (usually a son) had been diagnosed with some form of ASD. They would describe the struggle to understand and the initial shock of the diagnosis. But then they would talk about how someone from Autism Speaks would call them personally to offer help and assistance. They would get immediately connected to some of the best doctors in the country and here I was having to fight every inch of the way to get James just the minimum of care. When venting this to someone once she said that it behooves groups like Autism Speaks to connect with celebrity parents of kids with ASD because they become almost like a celebrity spokesperson for the group. But I kept thinking that I needed help more than they did. They had all that money and could get any and all the help they needed. It was poor stay at home moms that needed a little extra something.

Well, fast-forward to the sometimes foul-mouthed Jenny McCarthy and her incredible memoir of her journey into the abyss of autism and her struggle to "find a window" out. My opinion had obviously been changing from my previous "me" centered martyrdom to a growing joy for the incredible strides that James was making. But then Jenny let me into her world and I really began to realize how incredibly fortunate I (we) really are. It is such a wake up call to hear of her anguish over "idiot" doctors, hasty diagnoses and experimental treatments.

Bottom line it really isn't about me or James or anybody else it really is about support and finding the mysterious missing piece to this already too big puzzle.

(I highly encourage everyone to read this book. It is a very fast read, although I should warn that Jenny is foul-mouthed and doesn't refrain from it in her book. But if you can get past that, and I recommend that you try, you will see what I finally see - All the parents of ASD kids need the same things: love, support and most importantly love!)

S-L-E-E-P

That's right... sleep! We have been getting it and it feels great. For the last 3 nights John has slept for 7 hours or more each night. I think that maybe we found the answer in the right formula. Nestle Good Start. We had been giving him Similac because we had gotten tons of free samples from the hospital but we noticed that he was spitting up a lot and kind of fussy. Then I did some investigating and found out that Similac formula is mostly corn syrup solids. That's right, can you believe it??? So then I looked into all the brands and found that Nestle is mostly whey from milk. That makes more sense to me. So we had some samples of that and switched to that exclusively. (We had been using whatever samples we grabbed first therefore mixing and matching since we thought that they were all pretty much the same.) He is now not fussy AT ALL unless he needs one of three things: food, sleep or a clean diaper. He is sleeping better during the day too. It is true what they say: The better a child sleeps the better a child sleeps.

2nd Grade

James had an appointment with his developmental pediatrician yesterday. It went really well. Unfortunately Dave couldn't be there with us because he had to come home to be with Kayla and John but James and I managed. I have to just say that I love this doctor and her staff. We haven't been there since January and her assistant recognized James immediately and commented on how much he has grown.

Some of the more interesting/exciting things that came out of this meeting:
She wants to leave James's diagnosis as Autism Spectrum Disorder for now. I asked her about the possibility of Aspergers Syndrome (AS - the very high end of the spectrum) and she hesitates to give that diagnosis so young for a bunch of reasons. She isn't ruling it out completely yet but said that when he is a bit older she can administer some IQ tests that will help her get a better determination. My understanding is that kids with AS don't generally have language loss (which James had) and usually are on par verbally by age three. They generally just have extreme social delays. So we will see.

James is NOT hyperlexic. I know, I know... I have been hard core thinking this but I learned something very interesting yesterday in this area. Hyperlexics don't read with or for comprehension. They are simply decoding symbols (ie letters and numbers) and producing a string of words. Which leads me to my next point...

James is performing academically (in her opinion) at a 2nd grade level. Yes, you read that correctly. James read her a short story which was just printed words on a page. Then she asked him some basic questions which required some abstract thinking. (The story was a bout a yellow cat and what he likes and dislikes. So being able to answer questions about someone/thing that isn't actually there requires abstract thinking.) Then she asked him to do some basic addition and subtraction through a verbal word problem and he got that right too. (If mommy gives you a cookie and I give you a cookie, how many cookies will you have? Then if daddy gives you another cookie, how many cookies will you have? If you eat one of the cookies haw many will you have? etc.) So I of course said what are you recommendations for harnessing this power for good and not evil? ( a phrase I use a lot when referring to James) She said we could either have him moved up to the second grade where he would be on par academically with his peers but very socially delayed or we could amend his IEP to include one on one instruction in reading and writing. Oh, I forgot to mention that he is writing even more now. He demonstrated this for her by writing MOMMMY and JAMeS (his spelling choices).

So once I have something in writing from her we are going to go into the school and make some serious changes. They probably aren't going to like this but they are required to give him and appropriate education and I think that this is what we need to do. She mentioned some other things but over ll she was very pleased with the gains he has made in the last year and is encouraged for his future.