Preventing Autism 101: Planning for our GREEN baby

We wanted a brother for Kai since he was two. Things did not pan out just how we dreamed of for a while. Five years later Quinn finally joined our family. It was a long, stressful, and painful journey. What matters now is that Quinn is here and we could not be happier. He is an amazing little boy. His smile lights up our day. Always smiling, always eager to play and learn. He loves his big brother and I cannot wait until I see them play together.

Preparing for Quinn, however, took a lot of effort. I am not talking about a lot of trips to Babies R Us. I am talking about being physically, mentally and environmentally ready for Quinn to join us. Because I already had Kai who has an autism spectrum diagnosis, I had to take as many preparations as possible to ensure that the things I could control were under control: my body and the environment in which Quinn would live. This was important. Kai's blood tests and urine toxic metals test showed elevated levels of mercury, thallium, tin, aluminum, and arsenic. This meant that Kai's body could not naturally detox itself from all of these chemicals we all come into contact with daily. If there was any chance Quinn's would be the same, we were going to take every precaution to make sure his exposure was significantly minimized.

I visited the holistic doctor who was then treating Kai. I tested myself for toxic metals and even did several rounds of chelation. Gasp! My levels were normal or as the doctor put it, I " had as many metals as any human being who had been walking on this earth for thirty-something years had." We slowly changed our way of living to exclude harsh chemicals from our daily lives and got used to doing things differently. We started in the kitchen. We reduced the use of the microwave, stopped storing items in plastic, got rid of aluminum foil, started using glass and wax paper. More importantly, we changed our diet to consist mostly of organic foods. Quinn would have glass bottles, and everything else would be BPA free and free of anything else that would be considered toxic.

We painted his room in a zero VOC Sherwin Williams paint and allowed daily periods to air out anything left in his room by opening the windows. Additionally, we invested in several air purifiers to put in his nursery and throughout the house. His crib was made of solid wood and painted with non-toxic paint. We passed on any area rugs for his room because those tend to be highly toxic to any environment.

Once that was done, we found ALL ORGANIC fitted sheets, crib mattress, swing, bassinet, bassinet sheets and the bassinet mattress! Phew! That was a pain to search for and choose! It's not that we don't want him to live in the real world. He is going to be already exposed to all of the crap in our environment every single day. Why add even more environmental insult to a potential genetic predisposition we can somewhat control?

As for me, I took my prenatal vitamins, avoided ALL fish (no matter just how low the mercury levels were) and stayed as healthy as I could. I had a fantastic pregnancy with no complications and somehow only gained 13 pounds (maybe the extra 10 I had going into this was a factor?).

One of my best friends held a baby shower for us: a gorgeous, glorious green-themed shower and that set the tone. We were now officially ready to meet Quinn. Will he beat the odds and escape autism? I don't know. I do know that I will do my damn very best to try! I will journal his journey in this world. His quest, against all odds.

Update on us...it's been a while!

It has been a crazy month!

Had a lot of work that kept me busy and added to my already high stress.

I finally feel like these last two weeks I have been able to rest, and I am looking forward to this faux South Florida "winter" break. :)

A lot to post about but where to even begin?

I will begin with the little monkey.

- Reports after reports from teachers and therapists all said just how well he's been doing compared to before treatment with the new doctor. 

- Got a phone call finally yesterday that yes, his stool sample came in and instead of a +3 he is now at a +1 with yeast which means they are not colonizing successfully like before. Have an appointment for next week to probably repeat the yeast protocol. Not looking forward to it though.

- Back to the school and therapy news, he has been using the learned phrases from ABA and using them in real life scenarios. An example is when he said, "He is riding the bike" to tell me that a child that was at our house was using his bike/tv toy and to get him out! lol

- Some skills have come naturally to him. Simple things like putting his socks on perfectly, shirt and shorts are all great breakthroughs. Such little things that we all take for granted.

- He is riding his razor scooter much faster now and balancing quite well compared to last month too!

- While at his holiday party at school he grabbed my arm and said "Mommy, go home now please." Not that he wanted me to go home, this meant LET'S go back now, please. I almost packed up and left just because he formed the sentence on his own without it being taught to him. We didn't leave though. Made him stay. Mean mommy. :)

- So, overall, he has been a doll behavior wise and back to his usual laid back, smiling, singing and dancing adorable monkey with all sorts of new skills to show!


On to something else, CHRISTMAS IS COMING!! Woohoo...yes, I am excited. We'll see how excited after Thursday, but it's been a full year, and my hopes are high once again. Last year he conquered opening gifts with A LOT of prompting, but he did it. He showed particular interest in the gifts, but it was a success to have him rip the paper open even if he did run away afterward.

What started out as a frustrating task of putting the ornaments on the tree ended up being very enjoyable. He put on at least three ornaments on the tree. He had done so last year as well so when he initially refused I thought he was regressing! But, turns out he just wasn't as into the Nemo ornament as I was. As soon as I showed him an old one he did it with no problem. Yeh!

I have finished wrapping the gifts. All of the toys have been taken out of the box, filled with batteries and are ready to be played with right out of the wrapping! I labeled the outside of the wrapping with his name and wrote the word TOY really big. I also added the corresponding #s to see if I can get a pattern going to show him that a- it's a gift FOR HIM, b- it's a TOY and c- there is a limited amount he will have to open. I also numbered them from least enjoyable (a spinning top) to the one he is going to go insane for (the leapster). Only because if he gets the Leapster first, the other toys do not stand a chance! ha ha ha ha

I took the contents out of one of the gifts this afternoon and left it unwrapped by the tree to "test" him. It's too much all on Christmas morning anyway so this is his early bird one. He bit! Boy did he ever! He ran to the box which is way bigger than him, brought it over to me and said: "Mommy, open golf please!" (It's a mini golf kiddie set). I was so excited. I rushed to get the contents I had hidden and brought it out for him. He proceeded to help me build it. Wasn't too hard but it was such a nice feeling to have him next to me "building" something.

Ok, almost done I promise. One more BIG announcements:

1- I am 5 months pregnant! Yes! Very exciting. It's another boy, so there is a lot of worrying going on, but we are doing our best to make this a healthy pregnancy. Taking my prenatal vitamins (which have been very tough for me), probiotics, eating as much organic food as I can, planning a toxic-free nursery and well, you get the picture. REALLY trying to keep those darn "environmental insults" out of our lives. Due date, May 10th! Woohoo!!!



Have a GREAT holiday everyone and as always, thanks for reading!

Have a GREAT holiday everyone and as always, thanks for reading!

A fork in the road...

SIGH...

What a month!

I feel like it's never-ending. I am at a point where I feel like throwing my arms up in the air and walking away, but of course, I can't do that.

I have friends whose children have incredibly improved by 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 swear off trying new things and nay-saying just because it did not work for them. I am, however, turning into a disappointed and sad mom. Or an even sadder one 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.

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, and they are amazing TO US. The world is a cruel place, and it will be a long way before we 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 evident than at the playground or 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. Woopidyf'indoo. Why get excited? After all , I got excited when we first put him in an entirely integrative treatment school. Then when he did music therapy. Then when we started the diet. Then when we started a holistic approach.  Then when he did the hyperbaric. 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. Oh yeh!

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 doctor with another doctor. GASP! Yup! Well, I have needs you know? But seriously, I have not completely left our original doctor. I just want to see what else is out there and get other opinions.

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

The new/returning stims: well there is some random hand flicking when excited which he has never had before, ear covering, heavy scripting, and lots of crashing into things.

So we took him to see the new doc. He reorganized our current supplements. Took away four, 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 three years! You would think doctor # 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 three 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.

In other 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 four hours to bathe, have dinner and play. He has been exhausted. 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 with 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?

Took him to see Disney on Ice last week, and he enjoyed the part with Ariel because of all of the ocean reference. Behaved pretty well.

That's it for now...more to come.

The Parent Wars Part 2

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

I got there on time, picked up my coffee, and headed to meet the moms. There were about 7 of them sitting by a long table. One of the moms (we'll call her Claire) I already knew from my son's new ABA place. The table was coincidentally (I think) divided already. Moms of the older kids sat 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. I was giving the moms of the 2 and 3 year olds feedback on the different therapies and treatments we have tried. At one point, I was engaged in conversation with a mom who had gotten there late when I hear one of the moms of the older kids refute EVERYTHING I had told Claire! It happened so fast that I could not interrupt my current conversation to go back and defend her!

This mom that I already knew 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. 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 and wine- 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 takes to make a dish and then relish the taste of each bite. I don't often have the time to sit and enjoy a meal though truly...;( 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!

Where has this summer gone? Wow.
He starts school in four 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 reader's digest version. I don't think I will have time to get into all of the details.

- 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 appropriately 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 on our faces when we are trying to be firm and act mad. But it's so 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. 

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 helping 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? Grandma did not go with us. 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. This takes forever, especially if you add the supplement concoctions that involve measuring and dividing 18 supplements into healthy fruit smoothies for him to eat after his meals. 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 and had reservations for lunch and dinner at different parks. 

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

Well, he had a blast!

Here are the highlights:

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

- He rode Dumbo, the teacups, flying carpets, carousel, 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 list. He tried the Tapioca Buns and had them down before I even took four 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 rightfully 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 on the control board. :)

- Not ONE tantrum during the Magic Kingdom trip!

- We also went to Epcot, Animal Kingdom, and Sea World. Yup! 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 obsession again and has not stopped watching the movie. The plus side 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 real or just a fluke.

- He has grown so much this summer already. The ABA and new supplements seem to be 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. I was able to talk to him about animals and give him lots of information while in Orlando. 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.

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