TIME

August 2007.
That's when I first started this blog.
That was exactly four years ago.
That was three years AFTER "the diagnosis."
That's a total of 7 years of dealing with the crap that is AUTISM.

If you need a refresher, here is the link to my first post ever.
http://asdqueenbee.blogspot.com/2007/08/first-official-post.html

I just turned 40. Reaching such a significant milestone made me stop and take a look back at my life a bit. Where have I been? What have I done? Reading my first post on this blog makes me cringe. At the time I was about to enter the lowest of my lowest points in my life. I had no idea I was drowning. Looking back at all the posts since then makes me want to cry along with that girl typing away. In a way, I needed this blog. I needed to vent and express all that I was going through. It's not that autism has gotten easier. Actually, I still can't put my finger on exactly what IT is. Autism still sucks. I still have low points. The difference is that maybe now I can handle it a little more gracefully. Just a little.

My husband and I have realized that this is not a short-term issue. We have realized that we have spent the majority of our 30s swimming against the current, not making it very far and almost drowning. It's hard to parent and live when you are exhausted from "swimming." We all know that 80% of marriages of autism parents do not make it. Who wants to be a statistic? Sometime last year my husband and I took a step back and decided that we were going to keep swimming, but we would do some things differently. We were going to take self-imposed timeouts to play. Adult play. You know, dining? Movies? Something OTHER than autism? What a concept! We rallied our troops and realized that we have a LOT of family support in terms of babysitting. At least more than the average person. Instead of staying home after the kids have gone to sleep, we go out. We have actual adult conversations. We have wine. Lost of wine. Sometimes, we even travel. Gasp! Yup, travel.

It could not have come at a better time. Taking these timeouts has made us more patient, loving and level-headed. We are not letting the anger consume us anymore. We are allowing it to fuel us to continue on a more positive path. Positive. Did I just type that? Wow. Of course, we still lose it from time to time. We cry, we scream, and we curse autism. It sucks you know. But all I am saying is that it has gotten...BETTER.

I have met a couple of moms recently who have told me they look up to me. Me? Really? Why? Don't they know I am a mess? Surely they don't mean me. But, it seems as though I have grown out of a lot of the autism grief and started controlling it instead of letting it control me and my life. It has been quite an eye-opener. I was also talking to a very old friend today. She reminded me just how far I have come. "You are smiling again," she said. "There were a lot of things you use to say years ago that made me realize just what a bad place you were in and I just listened and supported you." If you read the first line in my first post from 2007, it says "Flash that million dollar smile." It was a reference to a high school yearbook phrase used to describe a photo of mine from 20 years ago. Phew! That was a long time ago. For a long time there, I did not know where that girl went. Where was she? Who was this other person taking over her body?

I owe part of my "improvement" to Quinn's birth too. Quinn is such a happy little boy. He lights up any room with his smile and attitude. We worked hard for Quinn and although it has been tough and he is not exactly out of the autism window yet, he helped put things into focus. Knowing Kai and Quinn will potentially have each other as companions for life puts me at ease a bit. Comparing Quinn's life to Kai's I have been able to make level-headed decisions that will benefit them both and ourselves. I am also more focused because of them.

Kai is always improving. He is currently attending an amazing summer camp where he has learned how to swim underwater! My little Nemo! He is reading at an upper 2nd-grade level and doing 1st-grade math (although he is going into 4th grade). He speaks more fluently now and exhibiting a lot of new cognitive skills. Yes, he is still following a holistic protocol, attends an ABA-based school, does hippotherapy and attends a weekly social group. But, I don't know what has worked or what has not worked. I do know that besides all the treatments and therapies we have thrown his way, TIME has helped and been key. Is there a common denominator here?

TIME
It has worked for me.
It has worked for Kai.

I hope the 40s bring more positive into my life than it did in my 30s. I am welcoming it with open arms because frankly, my feet hurt. They hurt from kicking so much ass lately. Oh yeah, you read it correctly. Cheesy, but I mean it. Bring it on. I am ready. New decade. New me. For me and for my kids because now, I am smiling again.

Oh, and in case you were wondering about the adorable PEACE LOVE AUTISM logo I used above for this entry, here is the scoop:

My "sister" blog, PUZZLE PEACE NOW, is owned by my best friend and partner in crime. It is all about what brings we ASD parents "peace" on this crazy journey. She is also a very talented blogger unlike myself (please spare comparisons..be nice!). Also, you can pick up one of those logos as your very own CAR MAGNET! Time to lose that old school blue puzzle one you have on your car and pick this one up! Hurry! Go read!

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!

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 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.

Update on us

Grunts? I will take them.

It seems my little monkey is truly trying to communicate with us more than ever before. When disciplining him it goes something like this:

Me: Don't touch

Him: (Insert grunt here)

Me: I said don't touch the _________

Him: (Insert more grunts here)

and so on.

It's annoying, but very cute that he is trying to "answer." He just can't find the words.

We have recently given him "I am sorry" and "OK mommy" to work with. He already picked up "I am sorry" or like he says "A- sorr."

There is continued progress in slooooooooooooooooooooow teeny steps.

He has also been saying "Are you OK?" instead of "I am not OK" It's his FIRST ever attempt to tell us something is wrong. Therefore he says "Are you OK?" and we reply "Are YOU OK?" and then there is silence, but at least we now know when something hurts or is wrong.

He actually had a fever on Tuesday morning and he told us in the middle of the night with his "Are you OK" phrase. He stayed home from school today and he was doing his "nose" stimming  Then he said "Are you OK? Ears!" so that's some progress, right? In the past, he has complained about his ears, but each time we take him there is no ear infection. I'm not sure what is going on there. Hmmmm...

In another improvement as of late, he is now drinking completely from cups without any prompting! Such a simple thing that took so long to master.

I am anxiously awaiting for summer to begin to start his 20hr ABA weeks. I have high expectations from this, being that 10K will be going out the window. :( It is the most expensive therapy yet!

We took away all soy! The only thing remaining now is soy lecithin. That's it! Soon we will find a nice recipe for air; there is not much more left!

Oh and this is the best one: He can now draw a happy face! Yup! He says:

"Circle, 2 eyes, nose, and a happy face (smile), ears and hair!"

They have been teaching him at school. I asked him to draw a circle and he drew the happy face and I could not believe it!

So, all in all, it's been going good. Still very slow and have not found our miracle but I will take anything that comes our way!

Diving in!

So we have waited all this time to dive into ABA and we are doing it!

I have decided to take the ABA plunge for the summer.

Not sure how we will pay for it but we will figure it out.

It is ridiculously expensive! So much so, we will be doing 20 hours a week versus the recommended 40.

I decided that this was the summer for the intensity of ABA therapy for him. I am sad he won't have the type of fun summer he usually has that, while therapy oriented, is still fun and with lots of kids. I figure the good this does should roll over to many many fun summers to come.

And it better be! With an estimated cost of about 10k , it better be or my husband will kill me!

And here I thought the $184.00 per week we spent for speech therapy was bad. Yikes!

Perhaps I can look into a second job for the summer too to help out.

We have to wait until May to go in for an evaluation. That way, they get the latest info on him. He will start the second week in June and go right up to when school starts again.

In addition, I got some information from a mom of a former student from his old school. His old classmate is now almost recovered! Wow! I am looking into the protocol they are using. It is a seven steps program. By just looking at it quickly, it looks like we have been doing the top five steps already with our holistic doctor. I am wondering if to add these two steps as well, but fearful of the combination of the other stuff he is already taking. I have to read some more on it. More in a new post later. She also recommended this ABA place who she swears by and that is who we will be using.

My question is, how do parents do it? How can parents get ABA services for their kids to happen? I think I want to set a goal that if I can recover my son, I will start my own foundation to help kids and will try to make it with the least amount of red tape possible.

We never did ABA exclusively because the school he went to for pre-school was all integrated with ST, OT, ABA/VB and RDI. He was getting a little bit of the techniques but not all the time.

This is very scary to us. 
Here's hoping it works!