Walking on Sunshine

The summer could not be any hotter. (Well, they could but then I would be in a puddle in the corner and wouldn't be able to write to y'all.) I also can't believe that it is already the end of July. Whoever said that the summer was a time to relax didn't have kids. Since school got out at the end of June we have: driven to Nashville and back, started back to school (for James), [I] led worship for VBS, had two sick boys, taken K to Gymnastics camp, celebrated at least a half dozen birthdays (with at least a half dozen more to go this summer), had Thanksgiving dinner in July... I am sure that I am forgetting something...

But I have yet to tell you about some of the more exciting things that have happened. About 2 weeks ago Dave and I met with a Nutritionist who specializes in ASD kids. She gave us a "plan" and we have embarked upon a new adventure. On Sunday we started enzymes with James. It has been 2 full days and he seems to be doing well. So I think tomorrow or Thursday we will go from the 1/2 dose he is taking now to the full dose. There is always the chance that these treatments will at first cause James to go "backwards" but the end result is almost always improvement.

Also, James will be attending a full day autism program in the fall where...wait for it, wait for it... THEY are going to potty train him. I know I couldn't believe it either when they told me. It isn't that Dave and I don't want to (alright maybe we don't want to) but its just that we aren't really sure HOW to. So I will keep you all up to speed on that as it progresses.

The other great news is that John has started walking. I don't mean that he holds on to the couch and walks around the living room perimeter. I mean he stands up and puts one foot in front of the other and takes a couple of steps and then falls on his butt. We have tried to get it on film but of course as soon as you turn on the camera all he wants to do is eat it! So we will try sneak some footage when possible and share.

I will leave you with 2 great pics. One is Kayla climbing the dugout pole in Nashville. The other is one that my Mom took of the boys. Enjoy!

Blessings Abound!

Once again I have managed to be so overwhelmed this last month that I have neglected to share with all of you some of the cooler things that have been happening here in NJ.

John has been growing in leaps and bounds. Gosh, I think that it has been 3 weeks since John started crawling! I know that it was a Thursday does that help??? Let me tell you, he is a speed demon. He can cross the room in seconds and not 30 I'm talking like 5! He cracks up over everything - namely his brother and sister. A few days later he pulled himself up to standing. And you can see when he stands, the way he moves his feet, that he will be walking any day now! (A little history lesson here: Kayla walked at 9 1/2 months and James at 10 months. So given that John has pretty much developed in the same ways that they have I am guessing any day now John will just stand up and walk across the room!) Oh, and again in true Gater fashion John has gotten two more teeth (yes, at the same time).

Kayla must have mountain goat or monkey blood or something. Why? you ask. Well, because that child likes to climb on or hang from any and everything. Her goal seems to be to freak me out at every turn. This past weekend we went to the Shore for Memorial Day. Monday morning we took the kids to the playground at Sunset Park where they have a 10 or 12 foot rock wall for kids. I saw it and thought Kayla would love it. Then Dave tells me that he watched her do it already. So he climbs up the other side after James and I encourage Kayla to climb up to the top where her Daddy was standing. Well, not only did she not need any encouragement, she didn't need any help. She flew up that wall like she had been up that wall a hundred times.

James, James, James... where to start. His move to the 4 year old class back in February has been great for him. Being home "by himself" (John naps almost the entire time Kayla is at school) has allowed him to have quieter time to work on fine motor skills and play computer learning games that have challenged him in other ways. But something else has happened that is amazing. (Well, this is less about James and more for James.) At the end of April I had a meeting with his current teacher and case manager. They had one opinion and Dave and I had another. They thought that for the Fall he should stay in the classroom that he is currently in. We felt very strongly that this would be a bad idea. First, it is a class that he has already been "doing" for the past 3 months. Plus, all the kids moving up into the class would still be significantly younger than him (part of the problem and why we moved him out of the 3 year old class). So I called SPAN (Statewide Parent Advocacy Network) and they sent me a packet of information written by the NJ Dept of Education called Autism Program Quality Indicators that gave me a lot of information regarding what a high-quality program should be offering to students with Autism. However, this is not the LAW. So we prayed that they would see how these points will benefit James and his development and that they wouldn't be completely focused on their budget and what the administration might think.

So the meeting wasn't great but it wasn't awful either. They were pretty set on him staying where he is. I did however say some things that made the case manager write in her notebook furiously! I noticed that when I quoted the law they both looked a bit surprised. I was careful to not get defensive. But at the same time I stood our ground. One of the things that left me with a glimmer of hope was that the case manager agreed that she needed to talk to the Home Programming Coordinator who had come out more than two months prior to evaluate James at home.

We saw James's Developmental Pediatrician the last week in April and she had only glowing things to say about James. I mentioned to her the document by the Dept of Ed that talked about the recommended program for preschoolers with Autism. She told me that just after our last visit (Nov '07) the AAP (American Academy of Pediatrics) published a document saying the exact same things! So that was definitely her recommendation. (Finally the AAP recommendations are paying off for us!) On May 6, James's case manager called to let me know that she had observed James for about 45 minutes the day before and "observed several atypical behaviors." (DUH!) Then she said that the programming coordinator was going to be observing James that day at 2 pm. In short they are revisiting the idea of having James go to the full day class for "High Functioning ASD." Initially they thought that this class would not be a good fit for him because most if not all of the ASD kids in it are lower functioning than James BUT the morning half is an integrated class with other typical 4 year olds. So although we have some reservations (and they are very slight) about him picking up the "bad" behaviors of some of the other ASD kids in the class, the afternoon is primarily 1-on-1 ABA and so James would be working with a teacher in a semi-secluded environment. They can also adjust the "teaching" more specifically to meet James's goals. Plus this means he would be in-district (not bussed to a school as much as 30 minutes away) and still a part of the local community. So after the coordinator observed him his classroom teacher, case manager and program coordinator sat down and discussed what they saw.

The very next day the Autism Programming Coordinator called. She observed James and then spoke with James's classroom teacher and case manager and they are recommending that James go to the full-day high functioning class. It is integrated with other typical 4 year olds in the am and then more intensive instruction with just the ASD kids and 2-3 teachers in the pm. This is good news!!! One of the major pluses of this class is the highly individualized nature of the instruction. So James will have someone always directing him and keeping him focused so that he is less likely to be idle. (Idle time for James leads to excessive mouthing of his hands and other objects, babbling and baby talk, or visual and verbal self-stimulating, to name a few.)

The following week the coordinator came over to discuss the goals to be included in James's IEP for the Fall. I was expecting her to talk about things like holding a pencil and cutting with scissors. Instead she showed up with a print out of the curriculum goals for the combined K/1st grade Autistic class. She said that it didn't make sense, given James's academic level, to confine him to age appropriate goals.

Fast forward to today, the coordinator, Cindy, was here this morning to work with me and James. One of the first things that he did was begin reading to her. About half way through the story she said, "We will definitely have to include him in the K/1 class in the Fall." Huh? She repeated herself and I couldn't believe what I was hearing. So during the time of the day that makes me the most nervous (when the only students in his classroom will be the other ASD kids with potentially negative things fro James to pick up) occasionally James will be pulled out and included into the K/1 class!!! Can I get an AMEN?!?!

Basically our fears and stresses continue to be taken away. It's about time! There are other things to share like the potty training that Cindy wants to start soon and the sensory diet that she can't believe James doesn't already have. Ahhhh, I have actually felt the weight lifting off my shoulders recently and I have to admit that it feels good.

I will try to post some pics soon. Especially since Dave got some really great ones down the Shore.

So much has happened

AAAAHHHHH!

Where has the time gone? I turned around and it has been almost a month since I posted. So let's see what has happened in the last 4 weeks (in no particular order):

• John went from 2 teeth to 6 teeth in about 2 weeks;
• Dave and I went to the DAN! Conference and learned an awful lot of amazing info;
• James has almost completely stopped napping (let's pause for a moment of silence...);

I know, you're wondering what about Kayla??? What did she do this past month? Well, really there isn't much she isn't doing. She is our amazing blessing. She is so much more mature than her age. (Is that right? Dad, help me out with the grammar here.) She loves school and her teachers can't say enough about how wonderful she is. She wants very badly to read like her big brother and tries hard every day to read just a little more. She loves playing with John. She is so good at watching out for him and just the sight of her makes him light up like the Fourth of July fireworks.

In other news, John's first two teeth (on the bottom) came quite awhile ago. Like the twins they came pretty close together. The twins also got the rest of their teeth in pairs. This was great because they would teethe really bad for a few days and then have two more teeth. Well, John started getting really cranky and was drooling like a leaky faucet. Then they started coming. Now he has 4 teeth on the bottom and 2 on top and once again he is as happy as can be again!

A couple of weeks ago Dave and I spent 2 days straight up to our eyeballs in seminars and workshops about biomedical intervention designed to treat Autism. WOW is all I can say. We were completely unprepared for how much info it would be. But it really made an impression on both of us. We not only learned about the typical things you might expect (GFCF diets, vitamins and supplements) but also about toxins and other things that may have contaminated our possibly already compromised kiddos. We also learned about working to prevent harm to our next kiddos. Sooooo, we came home and threw out all of our Teflon coated pans, food storage containers, plastic plates and cups. In their place we purchased new Rubbermaid containers, started using our cast iron pots and pans more often and invested in Corelle plates and cups for the kiddos.

Yes, I know some of you don't completely understand the sadness I am feeling about James's abandonment of naps but I coveted that time when the twins (and sometimes John, too) would nap and the house would be quiet and the time would be mine. I am not trying to sound selfish but I REALLY need that time. It is time when I can make important phone calls without major interruptions or respond to an important email or (heaven-forbid) take a nap myself. So now we are trying something a bit different. Some days we go out and do something fun after James gets off the bus (go to the playground, go see Mr. RAY) then the next day I let the twins know that today will be a resting day and Voila! Kayla and James both take a nap! Granted Kayla would nap everyday for at least 2 hours if I would let her but I think that this is better for everybody (at least for now).

Autism Awareness and Zucchini

more on zucchini in a bit...

Today is World Autism Awareness Day. I am so pleased to see all the attention that is being paid to this worthy cause today (and almost everyday, it seems). Though there is still the part of me that is sad that we have to have a day like this at all. I must say that for all the difficulties we have on a daily basis I am blessed and grateful that we have a very mild case. Yes, I do mean we. Though this may seem to be James's affliction we are all affected. We have all had to adjust our way of life to adjust for him and I honestly wouldn't have it any other way.

People often say 'I give you so much credit' or 'I don't know how you do it'. The answer is simple: Jesus. It is only through His gift of grace and forgiveness that I am where I am today. And I truly believe that without this saving grace I could not be the Wife-Parent-Daughter-Sister-Friend that I am today. I also believe that it is through His amazing plan that I have been connected to and been touched by so many who have taught me (and subsequently us) all the things I didn't know that I would need to know.

And now for the zucchini... John tried zucchini for the first time tonight and the outcome was not favorable! This is the first time in 3 months that he has actually rejected food. He seemed happier to not eat than to eat pulverized zucchini mixed with applesauce, rice cereal and formula. (You know you want some!!!) Ahhh, the joys of parenthood... more to come.

Big Boy Bed

I should start this post by telling you that Kayla has been in a toddler bed (Big Girl Bed) for several months now (since May) and James has still been in his crib. We had been noticing the past few weeks that their crib blankets had not really been cutting it in terms of keeping the twins warm at night. So we decided that for Christmas we would get them each new bedding for their beds. Then we thought maybe we should just bite the bullet and move James out of his crib when we put on his new bedding.

We gave them their new bedding on Christmas morning and they were (to our surprise) very excited. I say that we were surprised because James is very attached to his Green Blanket (kinda Linus-like). But he was definitely excited to have these new sheet and comforter. So the next morning we took apart his crib and moved it to the attic and brought out his new Big Boy Bed (identical to Kayla's - thank you Wagners). He watched David and me set it all up and was very excited to have it.

At nap time that day he came out of his room about a dozen or so times and we were worried that he might not nap ever again. But then that night he only came out of his room 2 or 3 times and then slept really well. The next day my mom was going to be here with the twins during nap time and I was certain that he would take advantage of that but she said that he only came out once. Okay, this might actually work.

And it has!!! He basically stays in his bed once we put him down for a nap or nighttime. He loves it and we are so proud. I have heard so many stories of autistic or spd kids who sleep in their cribs till they max out the weight limitations. We thought that this might be James. He loved his crib so much and loved to get in it. But we have made a few other changes too (new night light because the old one was shining very brightly right in his eyes) and he go down without a fight and stays in bed. (Still can't say that this is completely true of Kayla yet.) I will keep ou posted...

Uncharted Waters

Today I took James to see a new doctor. Her name is Dr Ginsburg and she is what some might call a bit "crunchy" and out-there. But she comes highly recommended. She specializes in autism and women's health and her "thing" is alternative bio-medical treatments. It was overall a great visit. She was encouraging and had lots of suggestions. We are starting Melatonin supplements tonight and will possibly start Methyl B-12 shots in a few weeks. Melatonin is the hormone that your body naturally makes to make you sleepy. Some kids who have sleep problems (this includes James) respond well to Melatonin and we are hoping that James will get better sleep and therefore have better days as a result. The B-12 shots are a bit more controversial and could have a negative effect instead of a positive result. There are a lot of critics out there who think that you shouldn't give your kids anything that isn't approved by the FDA. Funny though some of those are the same people who say we should question the government and big corporations and not just do "what they tell us." So we shall see... There are others who think that you shouldn't inject your kids with needles (even the tiny insulin needles required for B-12 shots) and I say, "If your child had diabetes and needed insulin shots multiple times a day you wouldn't hesitate. So why now?" My feeling is this: Autism is scary because there is no beaten path. No two kids seem to respond to the same course(s) of treatment and so there is no "norm." And for me I have to ask myself, "Have I done enough to try to help my son get better?"

After we have tried the shots for a couple of months she wants us to put James on a gluten free-casein free-soy free diet! He is already casein free and I am super scared about this one because I know that most of the work and adjustment is going to be on our (mine and David's) part. Learning how to cook and shop all over again. But again if it means steps forward for James I am willing and getting ready!

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!)

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.