A fork in the road...

SIGH...

What a month!

Finishing up the Nystatin my son has been on for over a month now. No horrible behavior shown though there has been an increase in some stims. Whatever...I feel like it's never ending. I am at a point where I feel like throwing my arms up in the air and walk away but of course I can't do that.

SIGH

I know this protocol works. I have friends whose children are near recovered doing the same or even less than what I am doing with my son. But, just, not us. I won't turn into one of those parents who swears off trying new things and nay saying it just because it did not work for them. I am however, turning into a disappointed and sad mom. Or even sadder than before. Not disappointed in my son, disappointed in my lack of ability to help him.

Why can't it work for my son? it's worked but only a little.

Yes, he is miles away from where we started but double the miles away from where we need to be. I want out of this club. I don't want to be a part of this autism club anymore.

A friend recently posted on one of our group boards how she wanted out. She wanted a normal life and not everything to revolve around autism. I hear ya sister. I feel the same way. I want out as well.

It also doesn't help that our very own "club" is just so divided. If I hear one more parent accuse another of not loving their child enough because they are treating them or that because they are treating them they are not accepting their child as is I am going to explode.

Screw the kumbaya talk people!

Our children are special TO US, they are amazing TO US. The world is a cruel place and it will be a long to reach a point (if ever) where people are compassionate of those with special needs. It is a dog eat dog kind of world and our kids are being swallowed whole in it. Yes, we can be mother warriors all we want but at the end of the day, we are still in the wrong kind of "special" group and I am so sick of it.

It is never more obvious than at the playground or at birthday parties. Why do we even bother going? I don't want to be any one's charity case or anyone to feel bad for me. Urgh! Sucks.

So much money spent on this journey. SOOOO MUCH!

We are now with a new doctor. Treating the yeast. Woopidyf'indoo. Why get excited? after all I got excited when we first put him in a fully integrative treatment school, then when he did music therapy, then when we started the diet, then when we started the DAN! protocol, then when he did the hyperbaric oxygen, then when we did chelation, then when we added new supplements or wait it must have been when we went all natural with our cleaning products, or when we bid farewell to the microwave or when we bought all new cookware, or when we started using distilled water only, or, or, or , or....you can only get so excited so many times about the new "it" thing.

Where to go next? I DON'T KNOW!

Can we move to a remote island somewhere?

After all, my son is so happy. Completely oblivious to anything going around him. If it wasn't for that great kid, and his sunny disposition I don't know how I would have made it this far.

He would be so happy on that island. Just living without being stared at, poked at, discriminated against, and treated! But that's not reality is it?

Nope, so we move on to the next best thing as always.

Now, looking for private schools so that he can get even more one on one instruction. Finishing up the yeast treatment, wait for more supplements and wish for the best. Again.

I assure you I am not always this cynical but there are just some days.....SIGH

Ok, rant over.

It's been a while...

and it has certainly been interesting.

I will start with the bigger news. We are officially cheating on our DAN with another DAN...GASP! yup! well, I have needs you know? ha ha ha ha but seriously. I have not completely left our Dan # 1 but wanted to see what else is out there and get other opinions.

We had noticed that he was just acting out like he does when he has a yeast flareup. A lot of stimming and new things that have been driving us insane. The good thing on all of this is that he does continue to show signs of improvement so all the bad we complain about is the stimming really.

The new/returning stims: well there is some random hand flicking when excited which he has never had before, ear covering, heavy scripting, lots of crashing into things and my least favorite and perhaps TMI is the dry humping..OMG that does ever drive me up the wall. What the heck? he is 6? I specifically told my husband that was not my department but to deal with it at 6? URGH!

So we took him to see the new doc. The doc reorganized our current supplements. Took away 4 of the 18 but left the rest and replaced some (like his probiotics). She also upped his B12 dosage. I never even thought about that! of course that needed to be done. It has been 3 years! you would think that Dan # 1 would have done that!He had to do the dreaded blood, stool and urine tests. We have not gone in for the results. We go in next Monday so we will see what she says but this is too much.

He had been off the probiotics for 3 days to take the stool test and that just sent him off the wall. That's when it got worse. He got better once he got back on the probiotics but to see him flip out was not fun.

He is probably going to go on anti fungals and honestly I CANNOT WAIT!

In other good news, my little monkey has started 1st grade. The poor thing is in school until 1:45pm at which point I drive him to ABA therapy until 4:15. By the time we get home he has about 4 hours to bathe, have dinner and play. He has been exhausted poor thing. But, he is learning a lot. He knows my name, daddy's name, his school, city, state, grade. He is beginning to answer questions too. All of that is helping a lot in his daily verbal skills.

He is appropriately saying "i'm sorry" which is the cutest thing ever except he goes right back to doing what he was sorry for.....lol he'll get it eventually no?

Let's see what else, took him to see Disney on Ice last week and he really enjoyed the part with Ariel because of all of the ocean reference. Behaved pretty well.

Lastly, so excited about Jenny's new book! I bought it yesterday. Perfect timing too. Anything to diffuse closed minded Offit's book which is also out now. Gee , I wonder where my son would be had I never intervened to remove metals! idiot...but I digress....Go Jenny! woohoo!!! A million thanks!

The Parent Wars Part 2

So, I attended a parent coffee break sponsored by the local CARD group. I had never attended one so I was not sure what to expect.

Got there on time, picked up my coffee and headed to meet the moms. They were all sitting in a long table, about 7 of them. There was one mom who I already knew from my son's new ABA place. The table was divided already with the moms of the older kids on one side and the ones with the younger kids on the other. I introduced myself and jumped right into the small talk. As we got going, I started to talk more with "my side" - the parents of younger children.

My son is 6 so I was giving the moms of the 2 and 3 year old advice on biomedical, therapy, vaccines, etc. At one point, I was engaged in conversation with a mom who had gotten there late where I hear one of the mom of the older kids refute EVERYTHING about biomed and vaccines that I had told the mom I already knew before this meet! It happened so fast that I could not interrupt my current conversation to go back and defend her!

This mom that I already knew IS doing biomedical interventions on her 2 year old daughter and she was getting attacked by this other mom. I don't mean attacked in a rude way or anything. It was more along the lines of " listen, my son is 15 and nothing of what you are doing will work, blah blah blah- you have to accept her as is and just stick with therapy"

Just as I was finishing my conversation with the mom that had gotten there late, I turned around to join the conversation next to me and defend this mom but the group was quickly dispersing and everyone was saying goodbye. I did not get a chance to butt in and I was so upset about it. Throughout the entire morning it seemed as if it was team A against team B instead of one united support group. All of the older moms were bitter, naysaying and rolling their eyes at the mention of any intervention that was not just ST, OT or ABA. Was this a debate or a "support" group?

While I understand that perhaps 20 years ago a lot of these intervention were not available, what good do they really do by being so negative and giving "knowitall" smirks to these newer moms or toddlers? Yikes! I was furious!

I left to pick up my son from therapy and as luck would have it I ran into the mom that had gotten the grunt of the bitterness. I was so happy! I walked up to her as she loaded her toddler in the car and said "Listen, I just wanted ot mention that you have to find what is right for you and your daughter. Don't let these older moms discourage you from trying different things. What works for me might not work for you so you have to find the formula that is right for you and you only. I noticed that they were all trying to sway you otherwise. I am sorry I was not able to jump in sooner". She looked at me, paused, and said while starting to tear up " I am SO glad you are telling me this. I left there feeling so down. I felt like they were mocking and making fun of me. I was just planning on picking up my daughter and crying on my way home!"

Just then, I instinctly hugged her and told her it would be alright, to stay strong and keep looking forward. I told her she was doing amazing! Shoot, I wish my son would have been in ABA at 2!

So here we are again, talking about the parent wars for a second time on my blog. Why? My goodness, I could never look at a parent of an ASD child and tell them not to try something or that they are wasting their time! I hope that if my son reaches his teens still with an ASD diagnosis that I am not bitter like these women were towards other moms. I know there are kids who have recovered doing stuff I am doing with my child already and I still encourage others to try it because of it. So, it did not work for me, why would I discourage others not to do so? I just don't get it.

There is something seriously wrong with people in our community. We need to stand united people! Cut the crap!

I've been tagged...

Ok, this is the first time I have gotten around to answering a tag request. I always mean to and then time just slips away from me!

This one comes from Thomas over at http://theautismexperience.blogspot.com/.

I have to write about 5 of my favorite things...not sure where to begin:
I am going to be selfish and write these about ME and only me. We all know I can go on and on about the things I love and it's usually about my son. For tonight, I will write just about me!

Lazy Days- I love days when I have no deadline, no goal and the time just floats by. A book, a tv program, a nap, a dip in the pool..aaaahhhhhh. Those are rare but I love them when they do happen.

Laughing so hard I cry and my stomach hurts- As long as I can remember, I have always cried when I laugh. It's such a great feeling to laugh so much that the abs actually ache from it. Those days are also not as often as I would like in recent years but when they do come by, I enjoy them a ton!

Traveling- I love going to new places and everything that comes with that; foods, shows, architecture, culture, etc...

Photography- I am obsessed with documenting my life! Not sure who I think will care to see it all one day but I have always wanted to document it. What better way than with a camera! lol I take way too many pictures, have specific ways I archive it all, design and order annual family yearbooks of everything we did and also work as a kids scrapbook designer! I have no formal photography training but I think I do... ;)

Food & wine too - horrible but I just love to eat. It makes staying in shape so hard. If I was not a vegetarian, I would have already gone to culinary school! I love to make and eat food. I thoroughly enjoy the process it took to make a dish and then relish the taste of each bite. I don't often have the time to truly sit and enjoy a meal though...;( With good food comes wine! I have countless books to self teach myself all about uncorking a good bottle of wine and all of the elements that there is to it (a whole lot I have learned)


Thanks for tagging me! I will have to think of who to tag next...beware YOU could be next!

I enjoyed this process. I will go to bed tonight on a positive note.

Big Disney news and more updates on us!

It has been a while. Where has this summer gone? wow.

He starts school in 4 weeks. What is that? CRAZY I say.

So much has been going on that I don't even know where to start. I think I will have to just post the readers digest version. I don't think I will have time to get into all of the details.

- Biomedically we added daily doses of acai , lipoic acid and rivoflabin. With the results we just had, it seems to indicate that the lipoic acid is helping to pull out more metals out of his system. In regards to stools, well, without getting into too much poop talk I will say this: the boy pooped great before and is a master pooper now. How can all of that come out of him?

Ok, on to better topics :)

- Improvements in articulation

- Mastering 8 to 12 piece puzzles patiently

- Copying block patterns on the table versus on top of the display

- Happy, patient and very calm

- Still stimming covering the ears, minimum humming and fingers in the mouth. I guess his teeth are bothering him and about to fall out? Not sure.

- Can now use yes and no appropiately though it has to be to topics he knows. I can ask "Do you like the Red Sox?" and he will proudly say YES. (even though he knows nothing about baseball)Therefore, I know he still doesn't comprehend it all but we are getting much closer now. I especially enjoy it when I say "It's sleepy time!" and he replies "no thank you". ha ha ha ha

- Continues to use kisses, hugs and "I sorry" to get us to forgive him or get what he wants. Hard to cover up the smiles off our faces when we are trying to be firm and act mad. But it's sooo incredibly cute!

- Cried the other day when a boy that was here at home playing with him left. He was very upset. He has never cared whether anyone other than mommy and daddy left the house. He was having such a good time interacting with the other boy. We could not believe it.

- He knows my name and daddy's name too!


ON TO THE BIG NEWS!

We just returned from Disney. Yes, I said it. Disney.

Those who read my blog KNOW all about my last Disney experience or lack off actually.

If you want to catch up read and relive my pain it's here :http://asdqueenbee.blogspot.com/2008/02/not-so-magical-disney-trip.html

Well my friends, it happened. The magic of Disney finally happened for us. Maybe it was more the magic of "parents spending too much money on recovering a child through therapy, biomedical and pure will" but I will go with the flow here and pretend it was the Disney magic.

The number one change this time? my mom did not go with us. Woohoo! sounds mean but boy did it make a difference. Imagine! I was able to call the shots on my own child! what a concept!

I did not make any morning character breakfast reservations this time. We got up and spent hours in the hotel room having breakfast and fixing his lunch and dinners to be with us at all times. We all know how long that can take. Takes forever especially if you add the supplement concoctions that involve measuring and dividing 18 supplements into Gerber fruit desserts for him to eat after his meals and get his daily intake of supps. Phew! what a pain in the you know what!

I took a single burner and toaster oven to make sure all of his food was cooked and stored in stainless steel without a microwave.

We charged his dvd player, had reservations for lunch and dinner at different parks and we were set!

We left the hotel at our leisure. No hurry, just playing it by ear. Other than the meals, everything was just slowly paced.

Well, he has a blast!

Here are the highlights:

- As we strolled in front of It's a small world he jumped out of his stroller, looked at us and said "YEEEEES!" and ran to the entrance. We ended up seeing this attraction 5 times. Luckily not all back to back. Wow! he was so happy, clapping and engaged.

- He rode Dumbo, the teacups, flying carpets , carrousel, the train, pooh, and even met the characters under the big tent! We used the GAC for everything and it was such a blessing as usual. He loved the parades too!

- We had lunch at the Liberty Tree Tavern near an outlet (for his dvd player). We love it there. While at lunch he said twice "I so happy!" WOW!

- He pointed more this past weekend then he has HIS ENTIRE LIFE. No joke! while at Downtown Disney he wanted to go back to the Lego store and he tugged my hand while pointing to it and said "LOOK!". Huh? a child with autism pointing? no way! well, yes way!

- Dinner was at the Plaza Restaurant where we were introduced to the allergy menu. Did you all know about this? a BINDER with all of the ingredients in everything they carry and items not on their menu. He tried the Tapioca Buns and had them down before I even took 4 bites of my meal!

- While we were leaving we caught a fireworks display which just topped off the night for him. He covered his ears and righfully so (it was like bombs!) but he had the biggest smile on his face and kept urging at me "Mommy! fireworks 1,2,3, go!" whenever there was a break in between. Too bad I was not at the control board. :)

- Not ONE tantrum during the Magic Kingdom trip!

- We also went to Epcot, Animal Kingdom and Sea World. Yup! can you believe it? he rode all shuttles patiently, waited to get on rides and just listened to me like he never has before!

- The aquarium and Nemo ride at Epcot was his favorite. He is still asking for Nemo now. Unfortunately he now has a Nemo obssession again and has not stopped watching the movie. The plus of it is that he is actually watching the entire movie which he never did before.

- We also caught the Illuminations fireworks show at Epcot which was just heaven for him.

- Sea World was also very nice. He loved when Shamu jumped and splashed everyone!

- I cannot wait to go back and see if this was for real or just a fluke.

- He has grown so much this summer already. The ABA and new supplements seem to be really doing a lot of good. It's the first time in a very long time that I am witnessing progress. I feel like he understands a lot of what I am saying a lot more. I was able to talk to him about animals and give him lots of information while in Orlando because he gave me amazing eye contact and was so patient the entire time.

- Only time will tell if this will continue but we are finally feeling good about his treatment.

Things coming up for us:

- We decided to continue the ABA afterschool for 10 hours a week once school returns.

- We will begin chelating in a couple of weeks again

It's never ending but at least there is a lot of significant progress now that helps us keep going and keep our focus!

Flying nightmare

http://abcnews.go.com/GMA/story?id=5238571&page=1

Did everyone read this story?

Sickening I tell ya. What is more sickening is reading the comments some readers have left.

Wow! one thing is a crying toddler, another is a crying toddler with autism.

As a parent, one of the first things I learned was how awful it was to be on the crying side getting awful looks. As an parent of a child with autism it is that x 10 because you cannot explain to your child what is going on! that is the part people just don't get.

They are wired differently. They reason differently. My goodness, people need to have a little more patience and not be so judgemental towards others. Had that woman kept coming over to my son and told him to calm down or try and touch his seatbelt, well, let's just say it would not have been pretty. Had my son been on the runway just taxiing around for an hour before taking off, yes, he would have been really pissy. And you what? he cannot control what he feels and his reactions? especially not at 2!

Autism has taught me to try to never assume and question any feelings I have before pointing fingers. Who wants to listen to a child scream at the top of their lungs? certainly not anyone! If you know autism, you know more than likely the parent is trying to keep things under control but it is VERY hard.

I stopped reading the abc board comments halfway down because it hurt. It did. One person even going as far as saying that flights are for peace , quiet and sleeping. Sigh. Geez, I thought they were to get from point a to b.

So I think, from now on, since you all know I don't sugarcoat things, I will wear this pin on flights for all those people who refuse to be a little understanding of a frantic parent trying to control their child:

and I INVITE any airline to try and throw me out of a plane. I just might hit the jackpot with that one.

It's broken! and other news...

Yes, that's what my son said to me. He brought over a toy laptop, lifted it with his little muscles and claimed IT'S BROKEN! with the sweetest voice.

What wonderful 2 words! I could not believe it.

I took the laptop, replaced the batteries and proudly showed him that it was NOT broken anymore!

He has never said that. In fact, something running out of batteries or broken usually means a catastrophe at home because he did not understand. He usually throws himself on the ground, screams and repeats what he wants over and over. I tell ya, I wanted to run into his room and break all the toys so that he would come out and confirm to me that he knows now! lol

Then, my mom says that while urging him to play with his computer the other day, he kept saying BROKEN! and my mom (who has limited English) did not realize he was saying so because his pc speakers have been broken on and off for the last month! We figured that was him answering her why he was not playing with the pc!

Yeh!

In other news, he started ABA last week, 20 hours weekly. We decided that instead of a typical summer program, ABA would be his summer goal.

I have also come to the conclusion that I will be pulling him out of speech. 2x a week is not good enough and especially what we are paying for it! He needs consistency in his therapies if they are going to work. Once summer concludes, I might put him in daily ABA sessions after school and add something else that he does 2x or 3x a week.

We did another DMSA challenge which came back super high for lead and thallium. I have a DAN! appt. next Monday if to return to weekly chelating supps. I feel like he has his a plateau with the DMSA though. Not sure what the course of action will be this time.

High hopes for ABA and this summer.