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!

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 the 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.

My son is wired differently. He reasons 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 pissy. And you what? He cannot control what he feels and his reactions? Especially not at 2!

Autism has taught me to try never to 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 tough.

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 two 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 means a catastrophe at home because he does not understand why it happened. 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, his grandma said that while urging him to play with his computer the other day, he kept saying "BROKEN!" and my mother (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 his way of answering her as to 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 concluded that I will be pulling him out of speech. Two times 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.

For now, we have high hopes for ABA and this summer.

Happy Birthday! I think...

Today is my son's birthday. He turns six.
He is beautiful and other than autism, very healthy.
I am grateful for that, I really am.
I love him soooo much it hurts.
This little thing that I carried with me and who showed me how to love unconditionally.
The one who still cuddles with me at night and prefers mommy over everyone in the world.

That's my boy!

"I bet your son loves birthday's, huh?" says my hairdresser to me today.

"Sure," I said halfheartedly. Better than the answer I always want to say " Nope, really, he does not even know today is his birthday, what a birthday means and that it's his turn today. Nothing, nada, zilch. Today is just another day for him."

It was hard last night when I put him down to bed. So many thoughts. I can't believe he is not five any longer. Six just sounds so old to me now. I cried and got all sentimental about it. 

But, here we are. No special plans today. Just a little bit of family coming over to sing happy birthday on a cake he can't and won't eat anyway even if it was diet approved. I don't want to be so somber, I swear. It's just reality though and covering it up with all the fake "focus on the bright side" crap won't help, and I just don't feel like it.

We officially celebrated his birthday last week at Pump it Up. He had an absolute blast, and the only autisms that happened were # 1 when he had to watch a video before entering the inflatables area # 2 during the "eating" portion of the party. 35 kids in a little room eating pizza and cake and he wanted to leave with both mommy and daddy. Of course, that could not happen so we had a tantrum. # 3 when daddy was still inside while he waited in the car for him # 4 when a toy he received on his birthday ran out of batteries and there were no more and nowhere to find more at 8pm on a Sunday. But other than that it was a blast to jump on all the bounce houses and slide a zillion times. He really did have a fantastic time.

So, today, a week later is his real birth date. When will he look forward to a birthday and get all excited? Request a theme party? Ask for a gift? Eat cake? Blow out a candle properly? Open gifts? Is that ever going to happen?

But, when did I ever get this depressing? Oh, I know! must have been sometime between planning his first birthday and now. Yeah! The first birthday when I booked Barney to come, and he cried while we sang. Hmmm, maybe it was the second one when we had something small at home, and he was in another world the entire time. Of course, crying during the happy birthday singing. Oh wait, maybe it was the third when I figured the way to go was a water park he loves so much. Nah, that can't be it. That's the one that he was spaced out while we sang happy birthday to him. That only leaves the fourth and fifth. The fourth gathering at the My Gym I so carefully planned with the beautiful farm cake. That one was actually the best one. He blew out the candle because we practiced it a thousand times, and it took him that many to do it that day as well, but he did it. But still clueless as to what he was doing there. Lastly, the 5th when I decided there would be no party, and we would go to Disney instead. On his real birthday, we sang happy birthday, and he ran away from us. That leaves this year. It's no wonder I am all exhausted with this birthday business and the expectations that come with it.

It must be that his seventh birthday will be the best one yet, right?Yeah, that must be it.