Cabin Fever

The snow hit us hard again, calling off school this entire week. IT SUCKS!!! Nate is craving that school schedule and it is nearly impossible to recreate that at home on a daily basis. I took Nate out to sled on our golf course and he just didn't really care about it. He was very distant and uninterested. Afton and I made snowmen (horizontal due to the soft snow) and nate watched from his sled. Very hard to see. I just want him to engage and enjoy playing. Is that too much to want?

I'm down with Hippocrates

Ok- I am MORE than frustrated again. I have friends being led down the wrong path and it makes me feel so helpless. I SEE in them, what I once was. A mom that thought the medical community at large had the answers.

My experience has been that the MD community does not embrace eating nutritionally correctly or testing for biochemical imbalances as a way to determine what might be medically wrong. If your pediatrician doesn't know about something, it doesn't necessarily make it less real, it might mean they haven't become knowledgable about it. These days almost all pediaticians belong to a hospital medical system and some of their practice of medicine is directed by that hospital and the medical directors. There are standards of practice that individual pediatricians don't generally stray outside of because they don't work for themselves, they work for a hospital system so they are required to conform. Thats good for some things but bad for people who need to think outside the box to find solutions. Sometimes what passes for "scientific evidence" could barely pass a test for being confirmed, its just what they've always done.

The training that MD's receive does not focus on what used to be called holistic health - which has become a term that sounds like granola crunching but actually just means looking at the whole person. The focus today is on symptom ID, and treating separate symptoms. Specialty areas have arisen so that the whole person is no longer examined or taken into account. Your pediatrician is acting independently from the pediatric neurologist, who is acting independently from the person treating asthma (pediatric allergist) who is acting independently from the person treating behavioral disorders( psychiatrist, psychologist) who is acting independently from the OT and the ST and the list goes on and on. How in the world can everyone get on the smae page? It is unreal.

My experience has been that the current MD community addresses medical issues with either pharmaceutical or surgical methods, or refers out for mood, psychiatric, or emotional issues. What I think is still fuzzy to many out there is that with the last issue of the DSM - Autism was reclassified from being a psychiatric illness to being a medical illness. But because it is diagnosed from symptoms and not a definitive blood test, it still has that voodoo aura around it.

My theory has always been Hippocrates first tenet: First, Do No Harm. If I want to try something and it won't hurt my child then what the heck. Its only time and money but what if it helped. Some people really have benefitted from all the voodoo I have heard so I don't want to blow it up entirely. I think it really does depend on the child and the family's willingness to do various things.

I wish I could say to everyone to develop a healthy skepticism that what you're being told is the only answer or even the correct answer for your child. You're the mom and you know that child better than anybody who sees them for a 15 minute appt.. I have my own little scientific study going on and he should be up from his nap any minute.

Ba-Ba-Ba-BEAUTIFUL!

We have sounds! Nate is finally repeating sounds on command. This is a big one! We are hoping this will lead to word formation now that we have a base to work with. YAHOO!! I have waited 3 years, 4 months, and 26 days to hear my baby call me Mommy. I hope I don't have to wait too much longer. Cross your fingers for us and think WORDY thoughts!

Ready for my Wheaties box

Nate graduated from his Little Gym class today. It is so fun to see him there as he just has so much fun. LOVE to see that. He is doing so awesome now on
the balance beam. He has always just run across it with one foot in front of the other with reckless abandon. NOW he scoots along as if he realizes he could fall. What a great realization. He also is jumping off the beam with both feet on his own as well. SO awesome. We have been working on that forever.

Nate is signed up for the next semester of class as well. I know he will have a blast and hopefully that will take us into Spring when we can hit the parks again!!


Here is a video of Nateman doing the beam....
(and there will be more pics on the babyjellybeans site)

Let it snow! Let it snow! Let it snow!

The snow is a-fallin'. ...and it is crazy COLD!!! BRRRR!!!! Bundled the kiddos up this morning to take Nate to school but Aaron left work to go pick Nate up. There is no way I am taking Neve out in this weather if I can avoid it! It is 15 degrees right now and feels like 2 degrees. They are calling for a low tomorrow of -8. Fun fun.

Anyway, Nate is home safe and sound from school so we will just bunker down until tomorrow. He did awesoem at school today. Went potty 3 times and stayed dry in between. What a big kid!

Breaking the Vicious Cycle

That title couldn't be more true.

Today is day 3 of Nate's new diet- The Specific Carbohydrate Diet(SCD). I know what you're thinking, how the heck could we POSSIBLY limit Nate's diet any more- he already he eats the healthiest foods of anyone I have ever met..? Well we have been toying around with this new diet for quite some time and we have decided to bite the bullet and go for it. The theory behind it just makes SENSE. Nate's gut is a mess, to say the least, and by putting him on the GFCF diet (plus no soy, nuts, and limited sugar), we have been able to maintain. meaning we have been able to get his poops under control for the most part and flush out some yeast and bacteria. BUT that is all we are doing. We aren't HEALING anything. I long for Nate to be able to eat a variety of things someday, and not have his body go into shock because he eats a cupcake or even a baked potato. How sad is that? Poor little guy. (I find myself saying that a million times a day :( ) SO we are moving on to HEALING his digestive tract and BREAKING THE VICIOUS CYCLE. I am hoping this is life changing for us.

http://www.breakingtheviciouscycle.info/

Basically we are removing all the complex carbs that Nate consumes (which is limited to 3 of his favs- rice cakes, rice chips, and popcorn), and replacing them with simple sugars that his body can break down easily. This shouldn't be too much of a stretch since Nate LOVES fruit and most kinds are allowed. He already eats meat and veggies at all meals- so replacing the rice and corn with fruit should be an easy transition- or so we thought. Nate is having withdrawal symptoms. He is addicted to the carbs- rice and corn. He is throwing tantrums for it and feverishly signing "MORE" "EAT" all the time. It is heartbreaking. I just wanna let my kid have his rice cakes while he sits and looks through his books. I know he will get past this as we have "broken" him before, but it is never easy. It is so hard to know that you are BOUND to this diet and the reality is that he will never be a kid that we can take to a ballgame and grab a hot dog. We can never grab an ice cream cone after the park. We will be rushing home to rub on or consume a handful of the 42 creams, pills, and tablets Nate takes daily.

http://www.breakingtheviciouscycle.info/autism/about_autism.htm

POTTY TIME! EX-CELL-ENT!!

Potty training a non-verbal child. How the hell do you do that??? WELL- it is not easy. BUT- we are giving it a try. We spent a week with the house flooded with consultants from Children's Hospital as well as Nate's aides. We all took shifts in introducing the potty to Nate. He really did a great job. I know this whole process is hard for some to wrap their heads around- such as why this is such a big deal and why we need so much help. My mother actually told me that ALL of her grandchilden need equal attention and she just can't dedicate that "extra" time to Nate all the time. I am pretty sure I will never forget that comment and it's too late to take it back. I guess the term "special needs" doesn't mean anything to her. Maybe if she picked up a book on "working with Autism" instead of the latest

Danielle Steele novel, we might actually have an involved grandparent on our hands.

BACK to the Potty Training--Nateman has been doing great. He got over the hurdle of understanding WHAT the heck the toilet is and

what it is for--NOW we will continue on using it appropriately. THIS is gonna be the biggest challenge.

*Pictures of Neve modeling the latest style in headwear...and Nate T. sporting his Mr Incredible undies.(the yellow spots on his back are B vitamins)