Presents!

Fun Times!

So Sunday, Dominic went grocery shopping with me and picked out a present for Shanti all by himself. (we don't generally buy the dog stuffed squeaky things because he goes crazy de-stuffing and de-squeaking them - makes a giant mess.).  Dominic picked out a stuffed duck with a ridiculous quack.   We brought it home, he actually helped wrap it (he taped) and put it under the tree. And then last night he got it for Shanti and helped him open it.

The dog immediately ate the ducks feet and de-quacked it (seriously, the quacker is on top of the fridge).  ITs probably 2/3 destuffed, and we had to vacuum up the stuffing.

Someone loves the tree...

He actually helped decorate it this year, too

What you can do

If you follow me on facebook, you saw me post about this over the weekend.


Those of you who wonder why our 6ft tall chain link fence is always padlocked... why we have the screen door set up with an extra lock at eye level, why we still have a kiddie lock on the door to the garage... why Dominic's room only opens into ours at night (and there's a kiddie lock on his other way out... Why we have an alarm system with all the doors set on it capable of beeping every time a door is opened... why even when one of us is outside too, its rare to see Dominic in the front yard.... this is why. Brace yourselves.

This is a huge fear of ours and we do our best to mitigate risk in our day to day living. We want Dominic to have some room to be free (see aforementioned 6ft chain link fence in the backyard), but we need to keep him safe. We live 4 houses up from a very busy street. There would be little to no time to catch Dominic if he took off running. So we do not give him the opportunity to. While we have considered a remote monitoring device (like the project lifesaver Cathy mentions in the above article), we have not gotten to the point of seriously finding one.

The responses to my facebook post varied from “I must be cutting onions” to “I had no idea” to “What can we do to help”. And this blog post is hopefully my response to the last.

We are, right now, in a fairly balanced place with Dominic which is better than many times in the past. Not having the Alpine bill and massive supplement bill each month has given us some breathing room, so something like babysitting for us to have a night out is not on this list where it would’ve been a few years ago.

That said. Here are some things that you can do specifically to help us

~ Understand when we would rather have you over to our home verses coming to yours. We want to see you very much and miss you tremendously, but its much easier on Dominic (and us) for him to be in a space that is familiar. (and Dominic proofed)

~ That said, instead of choosing not to invite us to gatherings because you “don’t know how to feed Dominic”, ask. He’s not that hard to feed, and if gluten, dairy and soy free is beyond you, its okay – we will take care of feeding him. We will also have one eye glued to him the entire time to make sure that he is behaving appropriately in your home. We will not allow him to behave inappropriately.

~ Getting a break is important for our sanity. And we have a babysitter who Dominic loves who will come over just about any time. So we would love to get together with other adults. We don’t get to do it often enough.

~ When you are around Dominic:
Don’t react if he starts physically stimming. Reacting makes him think that it’s a game and/or he’s a comedian and so he does it more. Most of the stim’s are gone, but occasionally we see big hand waving and flinging himself on furniture for the sensory input.

Don’t talk thru/around him. Catch his eye, speak slowly and don’t get annoyed if  you have to repeat yourself. He can communicate, you just have to have some  patience around it. Don’t confuse him by speaking about yourself or him in the third person.

~ Don’t refer to him as autistic. He is not defined by his illness. He is an extremely loving, funny little boy who has autism. Autism does not have him – we won’t let it.

Santa! Storm Troopers!

Today was the Starlight family Christmas party.  This is the first year we've gone. Crowds are not Dominics (or our) favorite thing, but we wanted to give it a shot since D has been doing So Well.  Starlight is the organization that sponsors our annual summer trip up to the North Pole amusement park.

So, we arrived, and the first thing Dominic did was glue. I had no idea that they made glitter glue.  Go figure.

Then he painted.  This expression is "stop bothering me, I'm busy"

Here he is sharing his marshmallow (yes, they actually had candy that he could eat - albeit laden w/corn syrup, but it was GFCF and we made an exception so he could have some) with Daddy.

This is so cool.  The woman who gave me an awesome massage ever while I was in labor (she was at that point finishing her apprenticeship with my midwife) is a storm trooper in real life. She actually did Dominic's 3 day old exam, if i recall correctly.  Saved my sanity with breastfeeding tips, too.  So here Dominic is hugging her almost 8 years later. 

By the time we got to Santa, he wasn't too sure what to do, tho.  We'd waited in line for a while and he was soooo patient.  Almost immediately after getting off Santa's lap he made a beeline to the bathroom. so all in all, I'm suprised I got this good of a picture.  And he came home with 2 more stuffed animals, which I'm sure are already in his bed.

These things are so nice for Starlight to throw, but at the same time my heart breaks for the kids who are so severely disabled.  We have it so much better than many. 

PTSD

Let me tell you about Monday

One of Dominics favorite therapists from Alpine years ago pinged me on Facebook to ask if i knew of any good localish pediatric GI docs.  As we talked more, it came out that her 19 month old had candida, leaky gut, and parasites not eating well.  And a doctor who told her it wasn't a medical problem. (no neurological regression yet)

In my head red flags went up EVERYWHERE and an alarm started blaring.  It was like dejavu.

 I was taken back to Dominic preregression - where he had the most horrible yeast rash ever.  I remember spending tons of time trying to figure out how to treat the yeast rash that was so bad it was cracked and bleeding.  And the herbalist muscle tested him positive for parasites..  He ate fine, fortunately for us.  But he was still breastfeeding.  And then he got some shots after his 2nd birthday, weaned around 34 months,  we got a horrible virus, and he regressed ~37 months old.

So - I've gotten her the info I didn't have then, and am hooking her up with the aweome mama warriors who hopefully will help her stop this before she sees a regression. And I'm so glad she reached out, I wish we could plaster these warning signs on top of billboards in every city.  But mainstream medical isn't quite here yet...

My reaction to this whole situation has been really incredible.  I am completely in agreement now with those moms who say we have PTSD from our kids experience. I get it.

~~~~

For the Record - because at some point I am sure I will need to reference it again, here's (some of)  what I told her

First, go watch this movie. I think its the best one out there on the whole overall protocol. Its really long, so you might have to watch in chunks

http://www.youtube.com/watch?v=IRTzqSlUBUQ&feature=youtu.be
  Go read and absorb the information at mmsautism.org   Then, change your diet to Gluten, Casien and Soy Free - both you and the baby since you are nursing   Some cookbooks we’ve used over the years:
Special Diets for Special Kids.
The Kid Friendly ADHD Autism Cookbook

Some websites I actually use (there’re a TON out there, just google allergy free cooking)
Real Sustenance
Gluten Free Goddess

Stay on the probiotic. When you run out of the probiotic you’re on, switch to Theralac. Add Aloe Juice (Georges is flavor free) , probably 1oz 2x a day would be sufficient to help w/constipation.   Start helping him drink 1oz plain water from a glass shot glass multiple times per day so he gets used to doing the action with just plain water

Then Start the MMS as per the instructions in the video above and on mmsautism.
If you see die off, and you probably will, you have a couple of options to negate
- Give him some citrus. Citrus negates MMS.
- Give Bentonite clay or charcoal as a mopup. We prefer bentonite

Die off can be in the form of a rash, diarrhea, crankiness, manic giggling, high energy, cold type symptoms… lots of things. You should get through the majority of the die off during the ramp up process.

You will do great. I'm so happy you are doing this before you see neurological regression - I really believe you have a shot at healing him before there's regression/ASD diagnosis. Call / email / facebook me ANYTIME. I've got tons of resources we can pull in, too. What no one said to me when I started - you are absolutely not alone. There's a HUGE community of been there done that moms out there who network and fight and experiement and help each other and we will help you because you are now one of us.

 

If I can’t have it, no one can!

Setting: Chiropractor’s office. Dominic’s had his adjustment and been outside to climb the tree while I had mine. We’ve gone to the front to pay and he has noticed the cute little mouse pen topper that is among the Christmas decorations


Dominic: “Mouse, I want Mouse”
Mom: “No, sorry, it has to stay here”
Dominic: “MOUSE!! POCKET!!!” (meaning, put the mouse in my pocket)
Mom: “Not today”
Dominic – reaching for mouse “I want Mouse”
Mom – putting it back “No, the mouse lives here”
Dominic: “MOUSE!! POCKET!!!”
Mom - “no”

As we’re heading out the door…

Dominic – grabs mouse off the pen and puts it in the cubbard, closes the door.

And then he didn’t want to leave.


Every adult in the room was trying really hard to NOT die laughing. It was completely a “if I can’t have it no one can” moment

Huh. Interesting

We had a babysitter come over  last night and went downtown to catch up with some old friends.  When we got back, she reported increased emotional development in the form of a sense of humor she hadn't seen before (plus a ton of chatting).  Apparently he thought it was HILARIOUS to creep up when she was laying on the floor and poke her forehead. Then laugh.   And he had her take pictures of his feet with her phone.

Overnight we had some snow - first measurable of the season.  Dominic insisted on going outside, so I bundled him up and sent him out.  He managed to lose a mitten at some point because he came in TERRIBLY distraught.  I told him it was fine and we'd get it later, but he insisted on going back out (with fresh mittens on) and came back in holding it.  

Where we come from and where we are going

As I mentioned awhile ago, Dominic currently LOVES the movie Cars2. He’s playing with his cars figures again, and really enjoying them. Last night I tucked him (and 12 cars) into bed, did our goodnight routine, and went to hang out with Rod in the next room where we were watching a movie (side note, Jack and Jill with Adam Sandler is laugh until you cry slapsticky hilarious). Maybe 20minutes later, out from under Dominics door… we saw Lightening McQueen poke his front end. Rod laid down and played cars with Dominic passing them back and forth under the door for 10 minutes before we made him get back into bed. It is so amazing to me to see Dominic functionally playing, sharing his toys, following directions (eg, Rod said, “send through Francesco” and Dominic did) and then getting back into bed without arguing.

We are making such progress.

At the same time its so important to know where we came from. To know that we are not alone there are countless other children in the same boat. And that its just not right.

Watch this. Brace yourselves, it is hard to watch (because I saw so much of what we’ve lived through with Dominic). But it is important to understand what Autism really is and why its so tremendously important that we try to stop the brain injuries that lead to it…




All except for the seizure, we’ve seen at one point or another in Dominic. We’re past most of it – he still can’t really tell us where it hurts when he’s hurt himself, but we’re getting there. He eats just fine. The aggression has been gone really since we got to full dose MMS and out of Alpine. Some days are still emotional roller coasters. Last night we had tears and anxiety when we suggested he put his 12 above mentioned cars in a bag instead of trying to carry them all at once in his hands. He got through it pretty quick, but the flash of anxiety was there.

ZIP!

(for a review of previous parasite protocol inchstone improvements, go here)

We have just finished (literally today) the bulk portion of Parasite Protocol #4.  (of 12). 

This morning Rod noticed that Dominic was *almost* there zipping his jacket up 100% independently (specifically the slotting of it in the bottom).  In our communication binder, the teacher today sent a note home saying how thrilled she was to see him zipping it all by himself, and then this afternoon, he did it all by himself for me.

Also new this week, he's actually trying to tie his shoes. They'd worked really hard on it at Alpine, but on a model shoe, not his, so he was just not generalizing it home.  Until this week, when he started pulling, crossing, and pulling through.  Loops are next. Loops are hard.

Verbals have been all over the  place this week, but today was a high of 580 (spontaneous) in the 2 hours that they keep data on.  

And he's now administering enemas completely himself - all i do is fill and swap syringes.  He inserts and he pushes the syringe plunger.  Blows me away entirely.

PS. - After I wrote this post, I put Dominic to bed and he let me trim his fingernails and toenails without complaining or crying - for the FIRST TIME in his life.   WOW.