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.

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!

It's baaaaaaaack!

The last time we had tested my son's urine for yeast it was a half-hearted attempt. He was not potty trained and the urine was mixed with a little water as we attempted to collect it in the tub.

Now that he can go on command we finally got a good sample and scary results to go with it too!

I got the results and then waited about a month to speak to my doc about it.

As it turns out, the OAT identified toxins produced by yeast. Well, duh.

He has elevated: hphpa, arabinose, 3 oxyglutaric acid and citramalic acid.

What does this mean?

Well I can go into the entire medical explanation, but I really like mine better: THIS MEANS THAT IT SUCKS! Yet one more thing that sucks about autism.

Now, my baby is supposed to start on grapefruit seed extract, Lacto-duo, colostrum and lipolic acid. Four more supplements to add to his diet?

The scary part is the supposed protocol to follow this week; the grapefruit seed extract for 10 days, then the lipolic acid for 3, and then conclude with a urine and stool collection.

There are days that I want to just take it all away and hand him a bowl of pasta with lots of cheese on it (you know, since he is gf/cf/sf). But, I know that would do no good either so then, what to do?

I am not looking forward to this. He has also been a little spaced out. We call his name and it' s taking him a good 2 or 3 tries to finally get him to look. This has not been present in about 4 years so it is heartbreaking to see some of that return.

Should make for an interesting post next week when it's all done.

So quiet...and the mouse

This past week has been pretty much QUIET.
I was so excited with each week of gains we had been having, but nothing this week.

Is this the plateau I was worried about?
I hope not.

We leave to Disney World on Thursday!
Let the packing begin!

He has been on the Disney website staring at the castle over and over.

He doesn't understand when I tell him that we are going to see Mickey and the castle.

He just gets excited when the fireworks shown on the website begin.

He also loves the Mickey Sing-a-long video, filmed at the park.

Since he's starting to understand the days of the week a little bit, I keep saying "Mickey on Friday." But, he just smiles, skips away and moves on to something else.

We visited last June.
He did pretty good and had a good time.
Fingers crossed for another good trip.

The hotel is lined up, refrigerator and microwave reserved for all of his special food and supplements. We are taking the toaster oven and a cooler with all his stuff.

I have my photocopy of his diagnosis as a back up as well as last summer's Guest Assistance Card, which was a blessing! Hopefully this will make it easier to get a new card without any hassle.

It is supposed to be in the 50s at night, brrrrrrrrrr, remember we are Florida residents. 50 is really cold for us. I just hope it does not rain. :(

We have booked 2 character breakfasts too!

Getting excited but as usual, nervous about all the what ifs.

Will post back soon.

True Colors

The beauty of beginning a new supplement is that you are just so much more aware of everything your child does. You also drive yourself insane wondering if it's the supplement or coincidence.

We have increased the amount of Methylaid my son takes as recommended by the doctor.

Ever since we did, my son has been a lot more focused on everything he does from eating to playing with his toys.

Last summer, he had a similar phase such as this one. He also did the same thing he started to do today, then.

For example, he finds his CD with the song True Colors and plays it over and over and becomes seemingly sad. Out of the blue! Why is that? I mean, just minutes before and usually minutes after, he is happy again but the song just brings him back to a place where he becomes very melancholic. At least, that is what it seems like.

In our autism world of over analyzing everything and coming up with a thousand theories, it is fair to say it is all a guess. We don't have a clue!

Frustrating not to just be able to ask "What is it baby? Why are you upset?"

I went in, sat next to him and cuddled him while I listened to the song several times. I finally encouraged him to change it to the other ones on the CD. He did willingly but the minute I left the room, True Colors came back on! He is there now. Back to that place.

I looked up the lyrics and they are really interesting when put into the Autism Spectrum Disorder world:

Enjoy and have a great weekend!

You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small
But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

Show me a smile then,
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know
I'll be there
And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

The Mommy and Daddy Autism Bank

"That will be $540.00. Do I charge that to your credit card?"

Sure, why not, add it to all the other crap we owe. What the hell, right?

My husband was right. Darn it. I hate when he is right, or more, I hate when I'm not right. Does that make sense?

I had just met with our DAN doc. We had to go over the ever famous French Porphyrin test results. Yeah, yeah, the ones we can't accurately get done in the states supposedly, yadda yadda yadda.

Turns out they were inconclusive, though there was an alarming amount of lead present. Not surprised, not after all the other tests; urine toxic metals and stool test showed a high level of toxicity. I am over my initial shock. The initial shock of my little 5 year old having such high levels in his body. But I digress....

"It's going to be $500.00 bucks" my husband said before I left. "No, it's not!" I replied. Drove an hour south to meet the doctor and 50 minutes back. Do I count the gas I spent on my car as well? I should, right? Got there, spoke to the doc for a good 15 minutes and that was that. The consultation was actually only $200.00 but the supplements we were running out of were $340.00 altogether. Then off to the supermarket for another $200.00 in organic groceries for just, you know, the basics.

How does this happen? And how do most families do this without going bankrupt?

Drove back home pondering on what had just transpired.
I mean, really, something has to change. Except, it can't.

We cannot take him off of his supplements. The ones he has been doing so good on. We cannot take the chance of him eating all of this food full of additives, hormones and pesticides. It has to be organic. Right? I see the good it's doing and that is the best proof there is but geez it's pretty steep.

Up on my next spending radar? A exterminator contract with all natural products, the pharmacy supplements which were separate from the other supplements I got at the docs, school uniforms, speech therapy sessions at a new place, and hippotherapy.

Kindergarten Roller Coaster...

The excitement! Right? Isn't that what all parents do before Kindergarten, get excited?

Even in our autism daze we managed to get excited. Even as I pre-packaged endless snack ziploc bags with GFCF pretzels and cookies. Even as I packed the pull-ups. Even as I wrote a zillion of post it -how to- notes for his new teachers. Finally. Even as I typed an All About Me report on my son for his teacher, including a section on the GFCF diet and why he had to follow it. After all of that, I was still a little giddy that my baby was going to Kindergarten. That bubble burst really quick.

We woke up on time, got everyone ready, charged the camera and were ready to go.


Actually, wait, let me rewind

On the Friday before the first day of school was his orientation. Everyone was all smiles on our way to school to meet his new teacher, classroom, and students. We arrived and even found parking right away. Imagine that! We went to the cafeteria as told and waited for the "orientation" to begin. I never did receive my letter stating where I had to go. When I called, I was told to just go to the cafeteria where all would be explained. In a blur of PTA bulletins, uniform tables, and others we made our way through. It was now 5 to 10am and nothing. Finally, someone walked up to the mic and announced that we should all be in our classrooms or we were about the miss our orientation. Hmmm, that's odd. I asked the woman on the mic where we were supposed to be. She replied that I was supposed to go to the front office for that.


This is where the fun began. My child is now upset that we have been in the cafeteria this long and he doesn't even understand what he is doing there to begin with. I walked him out and decided to stroll the campus while my husband went to the front office to find out. While "strolling" we ran into his pre-k teacher assistant from last year. My son got very excited, left me standing there and held her hand. Now I understood. He thought he was going to school like he did a couple of months ago for pre-K. She insisted we go by to say hello to the old teacher. Rather than decline (because then he would be convinced that yes, he was going to class), I did as she asked. He was very excited. Ran and gave the teacher a big hug and said "Bye bye mommy" like he use to last semester.


I began to worry that my husband was looking for me to make that joyous walk to the Kindergarten class, so I excused us and attempted to leave. My son was not having it. He refused to leave and chose a large bean bag and book he now had found over leaving. Go figure! His teacher offered to walk out with us or else he would still be there. Sigh.


As I walked out, my husband stuck his head in and announced "He is not even registered. They can't find him in the system." Oh dear. I took a deep breath and walked over to him. His pre-K teacher told them the name of the teacher he is supposed to have for Kindergarten and they scramble some. "Oh, he has Mrs. Thompson?" No, I reply, that is his pre-K teacher. You know, the one standing next to me right now? "Oh, so he is getting mainstreamed." Are you kidding me? Are you really deciding my son's placement right now in 5 minutes because you can't find his paperwork, after months of red tape and IEP meetings? I am sure they saw the smoke coming out of my ears.

I decided to walk out and let my husband duke it out and take him to where I was told he should be at. The teacher seemed clueless and had no idea who my son was and why we invaded her class. My son, in all of this, is upset his pre-K teacher left and probably thought we were insane in all of this. Perhaps he was right. I explained to her briefly what has happened and she listened as my son walked all over the room, turned the tv on (why is there even a tv with a Barney tape in here?), touched all of the computer buttons available and scrambled all over the place. Deep breath. When finished talking to another set of parents I re-introduced myself and handed her the All About Me report on my son and briefly told her about him.

My husband walked in with the head of the ESE who apologized and confirmed we were in the right place. He joined me in what seemed like a lost cause. The teacher said we don't need anything for Monday and to just show up. She was nice but not sure if that will get anything done or how much autism experience she has... but I think not much.

We also found out that this is a combined Kindergarten and 1st grade class. Most of the kids in there were quite verbal unlike my son.

I left. After the most stressful 30 minutes I have had in a while, I burst into tears on the way to the car. Why is everything "autism" so hard?

It is now Monday morning and yes, after all of that, we were still excited. What is that saying? Gluton for punishment? Yeah, that.

There were no parking spots available. We hopped out of the car with all the bags in tow and walked to the meeting place: the cafeteria. Wouldn't you know it, the meeting place was literally next to his old pre-K class causing a lot of excitement for my son at first and then a complete breakdown when they left without him. My poor baby. I attempted to explain what was going on, but he was not having it. He was very upset about not joining his old class. The new teacher announced "OK, let's go!" She held the hands of 2 of the kids and walked. And walked. And walked without ONCE looking back to confirm the rest of the kids and parents were following. Had I followed instructions, I would have dropped him off and my son would have run off to find his old pre-K class. She would have probably had no idea! Must have been overwhelmed this being the first day and all but with these kids all it takes is a second for something to go really wrong!

I walked in to find a semicircular table and the teacher extremely overwhelmed as she attempted to get them all seated. She handed him a purple name tag and asked him to match it to the chair with the same name and color. Really? That's all it takes? I have to ask? Of course not. He took the tag and wandered around the room like I knew he would,  clueless as to what was being said. I fought the urge to go help him do it. Part of me was testing them to see how they would handle it. She didn't. The assistant didn't. No one did.

I walked over and helped him find his seat. He stayed, but not happily.

I said goodbye and peeked through the door as he sat there lost in his own world. What was he thinking, I thought?

I walked back to the car feeling scared. Do I sit in the parking lot in case he runs off and she doesn't notice? I was glad he wore a cherry-red shirt. I was hopeful he would stand out and they would notice if he was not in sight. Was he going to learn anything today?

Where was this Kindergarten rollercoaster going to go next? Up or down?

A visit to the neuro...

Gotta love doctors and procedures.


Let's see, I arrived at 12:20 for a 1pm appt. because I had to fill out paperwork. Paperwork that was given to me at 5 till 1pm. You know, by the time my son was going insane in the waiting room. Thankfully, I took my mom or I would not have been able to do it alone. Walk in to a waiting room with no toys, but a clear view of the other room that was full of them. The nurse insisted he stay in the room without toys because the dr. would bring out his own. I ignored her and let him go get a couple of the toys and brought them into the waiting room with me. Good thing I did because the doctor didn't appear for another 20 minutes. Urgh. What is he supposed to do in a gray, square, boring room for 20 minutes? Sit still? Ha ha ha ha ha ha ha! He doesn't understand! You would think this place, an all autism center, would know that. Did she want him having a tantrum when the doctor came in?

In came the doctor and said: " How can I help you, anything I can help you with?" Huh?  You mean it's not obvious that my child has autism and I am here for your opinion? Are you kidding me? Let's see "My child has autism and I am here for your opinion." Shocker. This is called the AUTISM center, no?

The neuro basically said that all he needs is speech intervention. No shit? Speech intervention and the autism is cured? Wow, boy, where have you been all my life? What about all the intervention he has had up to now? He also requested a brain MRI and a genetics test to "rule out" anything that "could" be wrong 100%. He thinks there is nothing wrong, but just in case.

What about all the sensory issues he has? All the stimming? Echolalia? Scripting? "Oh yeah, that will go away with maturity." Really? Yeah, I see how that theory holds true.

Only good thing I got out of it is that in order to get him into speech there he needs a prescription and I got him to write it. I had all the admission paperwork ready and turned it in on my way out.

I agree he needs speech, but he HAS been getting speech. For the past 2 years. He acted like I was new to autism the way he was talking to me.

I did not mention any alternative intervention because # 1 he did not inquire and #2 also did not ask about his diet. Of course, he would have probably rolled his eyes at it because, gee, don't we all know that speech intervention is the cure for autism?

I will do the MRI and genetic testing. Hoping his other doctor will do the bloodwork so I don't have to go to a Quest or Labcorp place. I will ask his doctor what he thinks of sedation for my son, what it's done with and take it from there.

Thanks for reading my rant. On to the next chapter...

First Official Post

"Flash that million dollar smile," the high school year book inscription said. Those were the days. Happy and so different. Don't get me wrong, it's not that I miss high school or anything. Gosh no. But it's who I used to be. Smiling all the time... until life happened, sort of.

Life has been good, for the most part. A lot of ups and downs but nothing catastrophic. After high school came college, met my future husband, marriage, and then a baby. I won't get into all the details now as to how we came into autism, but I can say there is not too much smiling going on by myself and my husband.

We are lucky to have the happiest boy! He's completely unaware of what is going on around him. Lots of smiles and good times when we are home. If only we could live in a bubble, but we don't. As a parent, it is tough to see the cruelty around him and what will probably get worse as he gets older.


"Did you speak to your son?" said one of my students on a recent trip away from home. "Sure" I replied because I really couldn't get into the real answer. The real answer was " NOPE, I didn't speak to him because you see, he has autism. Even if I spoke to him he would be completely unaware of the phone, how it works and that mommy is on the other side. I can't ask him how his day went, can't tell him that I miss him and can't tell him I love him. I mean, I can, but he would probably be more into pushing the buttons on the phone then taking it all in. So my answer is NOPE, I did not speak to my son today." Sigh...not much to smile about.

Flashing the million dollar smile feels more and more like work every day and I just don't feel like it anymore. Maybe this blog will help me cope somehow.

Tomorrow I have an appointment with a new neurologist. Just because. Not because I really expect him to say anything worthy. Following the steps as usual. The last one we went to got mad at my son for opening and closing a door and for playing with the window blinds. He also wrote his report all wrong with "facts" he chose to write, for whatever reason. Seemed to me like he used the same letter he wrote to someone else and changed the name on top. Not excited about that.

Friday is our school open house where we get to meet his new teacher and class. He will be going to an autism cluster to begin Kindergarten. The last teacher barely knew how to handle the autism kids and had to be told about the GFCF diet. She had never heard of it. I hope this one is up to date with all things "autism."