Learning something new...

I started taking David to OT this Friday. I decided to do outside OT because David doesn't get much time with his OT at school and we know he needs more help with motor skills.

Learned about 2 things to help my son.

David responds well to squeezes. Not full body hugs with pillows but firm grips with both hands on his arms and legs. 

I never knew.

Now I know and we will do this at home at least 4-5 times a day to help him "load his nervous system".

David likes Theraputty. Hide marbles in it and he gets a fine motor workout digging them out!

Already ordered some on-line. 

Can't wait to learn about more ways to help my boy in two weeks. 

I just need to know what to do. Show me and I'll do it.

Something else...

So...we finally made it in to the doctor on March 29th for David's blood draw and IV glutathione. It was interesting, but we got it done. David was very calm after the glutathione, which I hear is very common.

Then we wait for 1 week for the results.

During that time I went to David's school for a conference with his teacher and OT/Speech Therapists. They have discovered that David is a "sensory seeker". David has not been able to focus, especially during group time, he would tip back and fall over in his chair consistently which would distract the class. He is also not ready for pen/paper work or scissors, he's still too far behind on the much needed fine motor skills to operate these simple items. So, the teachers are working on getting him to focus and strengthening his fine motor skills though games to hold his interest.

The therapists tried a few things and found that if they have David sit on a vibrating chair pad AND wear headphones with an MP3 player playing classical music that David would focus better.

Interesting... one would think that might be more distracting.

Well, one week after the blood draw I went back to visit David's doctor for the results and talk about our battle plan as it continues.

We were focused on that aluminum in his system that was so high (10) before... it was down to 6! The arsenic in his system had stayed the same though and the fractionated urine test showed that it was a HIGH amount (out of range) of inorganic (toxic) arsenic. Where is this arsenic coming from? More than likely, fruit juice and organic apples...I'm sad to say. I'm going to have to start juicing from scratch with dark berries to provide the "base" we use for giving David all his supplements during the day...and no more juice box in his school lunch.

If it's not one thing...it's another, right?

Ok- so we put David on glutathione suppositories every night since we found out two months ago about that high amount of aluminum. We also sent in that urine test because we wanted to know more about the arsenic. We have had David on B12 shots every 3rd day for quite awhile...with small changes but nothing truly significant.

Well... the test that we took recently showed an elevated MCV, which the doctor says can show up when the body is lacking B12 and Methyl folate... so we needed to do more.

Kids with autism are kind of like onions... there are all these layers...and those layers are revealed by doing testing (blood draws, consults with PT/OT/Speech/Sensory etc) only then can we truly start to understand what is going on in our child's bodies... because autism is different in every child.

So- we will do B12 shots every other night for 2 weeks and then move to every night until further notice. We are also increasing the Methyl Folate (5-MTHF) from 1 mg to 2mg. I'm excited to see changes... we are moving in the right direction, I know we are.

I was so sad to hear that David is the kid who needs the most attention in his class from the teachers/para-educators... how hard is that to hear as a parent? But then...a glimmer of hope... because I strongly believe that God has a major hand in my child's life and with me and Troy being his parents.

I told David's doctor about the findings at David's school with his teachers and she immediately recommended the Tomatis method, low and behold one of 8 specialists happens to be right up the road from our doctors office.

I am still learning about this method, but I am also fascinated and can not wait to report on the changes we will see in David.

Basically, they're 2 hour "listening" sessions that retrain the brain to sift through unnecessary stimuli. Some of our kids are overwhelmed because of the barrage of stimuli...right? This helps them learn more effectively and sort thru items that would normally distract them so they can focus better. Listening effectively, whodathunk?

Check out: www.sacarin.com there is also a link at the bottom (for some light reading) on the research conducted with the Tomatis method in children with developmental delay and autism.

Stay tuned...

My nose...

Just a quick blog about my nose...because I'm feeling sorry for myself.

Pity Party!

This is the third time that David has slammed his head into mine (unknowingly) and crushed my poor nose. It brings tears to my eyes every time.

Luckily, it's not broken- just very sore. This kid has some power behind him!

What hurts more is that David laughs because he doesn't empathize very well- he doesn't understand his actions caused me pain.

I can stop him and say, "David  can you say that you are sorry to Mommy, you hurt her nose"  (as he is rubbing his head from the accident).

Then I ask him to kiss it. He lays his lips on my nose...no smack or pucker...just contact.

I love my boy.

Constantly changing...

Just wrapped up another visit follow-up for David with his new Dr. She asks tons of questions about how he's doing and adjusts supplements accordingly. We talked about all the "white & brown" food he eats- the pancakes, waffles and french toast. It's a concern. We need to work on adding more items to his diet...I've been trying! Argh.

I will start taking David to additional OT starting February 24th and will also talk with a nutritionist to see what tricks and tactics we can use. It's hard to introduce something and have him waste it...constantly.

David loves veggies and fruits- but we've been doing canned with no salt. We need to switch to frozen as cans can have BPA in them and possibly aluminum too.

Aluminum- another concern. From our whole blood mercury/lead test, we found David has a very HIGH amount of aluminum in his system. We know that this is in some/most immunizations...so it could be from that, it also ones from cookware and stuff too. I have no idea what my huge Costco cookie sheets are made of...so we'll need to buy new ones, since I bake so often on them.

David also has a good amount of arsenic in his system too. There are two forms of arsenic: organic an inorganic, the latter being the dangerous stuff. So we are doing a fractionated arsenic test (pee in a cup) to determine what type it is.

Did you know that arsenic can be found in chicken and apples! Learn something new everyday!

We are going after that aluminum right away: Aluminum is a neurotoxin and can affect his development. We will start giving David glutathione precursors: Glycine, NAC and Glutamine to help his body hopefully rid itself of the aluminum. Oh, did I mention we will also have to do nightly glutathione suppositories- joy.

I don't mind, if it will help David in the long run and get his body that much closer to healing itself on it's own. We follow-up in 8 weeks with another blood draw that I'm not looking forward to, as we are not drawing at the normal lab and with the normal person we are used to. While we do the blood draw at the Dr's office,  they will do an IV push of glutathione as well to boost that attempt to rid the body of the aluminum.

Momma's going to need valium for that blood draw day...and I get to load David up on GABA and bring the iPad in hopes of that much more distraction during the draw. This is really the hardest part thus far for me.

We will follow-up one week later for the blood test results to determine the next course of action. If the aluminum in the blood goes down, we will continue with the precursors and possible IV pushes of glutathione... if they count does not change we will have to look at possible IV chelation, which at this point feels impossible since blood draws are so difficult.

We may also increase his Methyl folate and B12 to every other night instead of every three days.

Stay tuned, draw in on 3/29... results on 4/4!

A little weight...

this is just a few months ago in October

Just today- we started Enhansa about 3-4 weeks ago.

For those of you that have autistic children, you know how eating and food are constantly on your mind. You may have a super picky eater and it isn't always the best food that our children enjoy. For David, it's breakfast: pancake, french toast or waffle...as long as it has syrup, he's happy...this is for EVERY meal. He's been like this for years and he eats his fruits and veggies fairly well too and LOVES chips and pretzels...so he's a kid after carbs. We put him on the GFCF diet and he won't eat meat (unless it's bacon) and even now he's not that in to bacon.

I'm actually going to look into nutrition therapy, and ways or tricks to introduce new foods to him. It's so hard and frustrating when you spend the money on a new GFCF item and they take one sniff and won't touch it. I do all of my own baking for David but full meals are harder. He was doing Ian's chicken nuggets for awhile, then just stopped. He won't eat grilled "cheese" sandwiches any more and won't let me make him any kind of sandwich...all he wanted for lunch was his crispy bar- now he won't even eat that!

Well, he's always been thin, and very tall. We started a new supplement a few weeks back and we have seen immediate results. It's called Enhansa, check out the link if you want- no we are not being paid to mention it. It's a pure curcumin supplement to enhance absorption... all we know is that since we've been on it...David has gained weight! We noticed he has a "little gut" which you would get from eating carbs... it's actually encouraging. It's prescribed by our new Dr, but they offer a chart on-line for directions to self administer as well. I'm very impressed so far. I will watch him though, as that seemed like a lot of weight in such a short time- Dr isn't concerned at this time. His body is starting to retain/absorb calories, vitamins and minerals too- this is a good sign.

Just thought I'd share... see the before and after pics (sorry about the blurry after picture, David was upset by the flash and would cry)

A vision...

Well, here we are in the New Year. I'm not a crazy blogging Mom, but it's nice to get an "Are you going to update your blog soon?" from a fellow mother.  I love to know I'm being read and maybe helping a few people out there with what we have been through so far.

I'm not big on New Years Resolutions, but I'm praying for good changes and the strength to be a part of something bigger for our church and eventually community.

The Lord has given me a vision, a passion for our fellow parents with special needs kids.  I hope someday to start a support group for parents in our church with kids that are special needs to support each other and pray for each other through rough times. I think that when things are good for some others may be going through a hard time and we can lift up and encourage one another in which ever side we are on at the time.  Sometimes, "regular" parents may not understand some of the things we struggle with day to day, especially if they are not exposed to those with special needs.  How little things are really a BIG deal for us. I'm not saying there aren't parallels for all parents, and I'm not trying to make special needs parents more "special"... parenting is hard enough in itself...right?

We have a wonderful loving church family and all of our volunteers that help with the kids are really great, they are open to learning about the children who attend that have special needs and how to interact with them... it's a wonderful thing to have.

I'd eventually like to open that support group up to our community also... but first things first. I have learned in my years with kids that I can NOT be supermom, it just is not healthy. I have to ask for help. I know I can't get this group up and running by myself, I have a vision for it- but I know it can be much more...so I pray, if someone is out there that may have a heart for this as well, that we can team up and take different aspects of making this vision come true. 

I know my pastors are behind me, I know that I would like to make this a quarterly group (for the time being), I know I want to have good childcare available and that we will use the church and share a meal together. I want to get to know each other first, then bring in folks to talk about certain topics like biomedical/naturopathic treatments, GFCF diet, B12 injections, things like that...for folks that may enjoy the info and just want to know more- I'd take that time to get suggestions for things families want to hear about. I would need help gathering resources, maybe creating a newsletter, maybe sponsors or donors (for when we support the community) to create a grant for families that need extra help with supplements or treatments that can't afford those things...it is all just so exciting!!

I'm happy to report...changes!

What a great week so far, and it's only Monday.

Checking out his new drumsticks on "can drums" we made...

A new fidget toy to help him at school...

Tinkertoys! I loved these when I was younger...

Got some great feedback from a teacher/Mom at our church that David's verbalization and response to questions being asked has really improved...we are noticing that as well at home.

The methyl-folate was added starting 12/22 and things have gradually started changing. David is more verbal, and more vocal, which can be hard because things seems to upset or frustrate him a bit more. It is to be expected though, since the methyl-folate is helping the vitamin B12 do it's job! Basically, neurons are being repaired and David is getting more stimulation, which can be more overwhelming...hence the vocalization (screaming or stimming (hand flapping) and increased rocking.

So, small downside is David throws himself down and grunts/screams/vocalizes when he doesn't like something he's being asked to do... we just encourage him to use words to help him and tell us what is upsetting him and help him work through it.

It's a change that may not be desired but I will take it, because along with that are wonderful things...like the following conversation.

David:Momma will you sit and talk with me?
Me: Sure...what should we talk about?
David: Curious George.
Me: Ok, let's talk about Curious George...is he a rhinoceros?
David: No!
Me; Is he a monkey?
David: Yes (with such enthusiastic inflection)

I still need to prompt the conversation, but we could talk all day.

I look forward to more of these conversations and the balance to tip to where I won't have to prompt him to talk, but that I won't be able to shut him up =0)

My boy is also singing a lot...he's memorizing songs and sings them while he is playing. To the Moon (from Sid the Science Kid) and a song about decay are his favorites right now. I'm not a big fan of Sid the Science Kid except that there is a lot to learn (thank you PBS) and that seems to override the irritation I have with Gerald (one of Sid's friends)... and the show in general as it seems a bit pretentious.

Today, David shared that he didn't like an item he was given for snack by saying "No, I don't like those." and pointing...that's new because instead he would normally just leave it untouched on the plate!

Also, we have had quite a few weeks of independent potty success! David wants to use the potty on his own, with the door shut for privacy. I encourage this, but we have to continually check on him as he likes to lay on the floor and play. We've had to put the hand soap up out of the way- as we will come in and it is empty...all over David's hair, face and hands, not to mention the floor. David still needs help following through with pulling up undies, pants and washing his hands...but we are getting there. I recently added PECS in the bathroom for help remembering the steps for potty and one in front of the sink for hand washing... I know we'll get there.

What is wonderful, is that this potty thing just happened...basically David started in on his own and we are so grateful for that... now we just gotta get all the steps down.