An update and a little more...

I was hoping that taking that leave of absence from work left me more time to blog. Ha! Right! That seems not to have worked out considering my last post was in August. I was way too optimistic and unrealistic. From now on I will cut myself some slack and blog when I can. Period. I had also hoped to separate both kids blogs, but that does not seem like it's going to work either. It will be one blog and one blog only. I will also blog about my life or my attempt at one and not just autism. It's a brand new ME!

Quinn (1) is making steady improvements in the motor skills area. With the help of PT, OT and ST he keeps improving on a daily basis. Not crawling or walking yet, but he is taking steps with support and also goes into knees and hands with little help. Fine motor skills are also emerging left and right. For example, he now holds his sippy cup proudly. He also signs "All done" and for "more." He is a super happy baby; everything is funny, everything makes him laugh. What a joy!

Kai (8) is also improving by leaps and bounds. At times, though, it's hard to remember that when he is scripting the entire Pillow Pets commercial or Elmo Holiday DVD. Urgh! He is reading at 2nd grade level (he is in 3rd grade) and doing double digit addition- even carrying over 1! He loves school and has started to use better-structured sentences unprompted! Imagine that! We are still using the doctor that is four hours away: ruling things out and going back to the beginning by carefully testing and acting on blood/urine/stool results. He is still on a GF/CF/SF/PF mostly organic diet. Up next, we will be going back to the "toxic metals" chapter. We had dropped that to focus on gut issues. Now that his yeast is under control and testing is back to normal we are ready for this stage again. 

He continues to attend hippotherapy and a social group both once a week. He has visited Sea World, local fair, the movies, bowling and even sleepovers with his social group. He LOVES it!

Both kids had a fabulous Christmas. Quinn seemed interested in the gifts, and Kai wanted to open all the presents- even if they were not his!

OK, off my soapbox for today.

Here is hoping everyone has a fantastic 2011!
May the force be with us all.

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.

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!

The Magic Potion Lotion

I love the Authia cream. 

It's the newest thing we have added along with removing all aluminun foil from cooking any of his meals. We are also not microwaving anything anymore for him. Bye bye micro!

He is now pretty much 85% organic too. . We are only missing toys, bed sheets, mattress and clothing. As I type there is even a guy outside installing a salt water pool system.

But, back to Authia! Wow...here are some of the things he has done this past 22 days:

- Has become increasingly aware

- So much so that separation anxiety from his teacher has started. Instead of being zombied back and forth all day he is aware of where and who he is going with.

- Speech therapist said he imitated actions with Mr. Potato Head

- Two days in and up to yesterday at least has started to point to days and months during morning class ritual song.

- Played with his music drum appropiately

- Requesting "lunch time" any time he is hungry (he NEVER requests this-usually only requested pretzels)

- Started finally drinking from a cup and trying from the water bottle

- Pointed to my shirt and said "green!"

- Pointed and attempted to read some words from my PC screen

- Pointed to my car as I pulled up to the house and said "Look! Mommy!"

- When being scolded for pumping from my lotion in my bathroom he covered his face in dispair and said "Not again! " lol

- Passed his first ever reading and spelling test!

- Really trying to read words more often. This morning he read "Barney in O Square" for -Barney in Outer Space"

- Asking for his teacher when he sees her walking away

- Very curious investigating stuff all over the house

- Interested in my reading words to him

- Can untwist water bottle and pour with mostly success

- Making pretend he can blow up his big play ball (he can't do a straw yet but probably soon!)

- Kicking his ball

- Drank water from a fountain for the first time

- Said "I love you daddy"!!!!!!!!!!!!!!!!!!!!!!!!

- Game me a voluntary, non requested BIG HUG as he said it too! ;)

Don't get me wrong, there still been hyper days and some days when the stimming drives me up the wall, but overall it has been more good days than bad. As usual, we are waiting for the "bad" to resurface because every time we start to get used to a lot of gains something goes south. 

For now, we are happy-happy-happy!

The fog is lifting!

Got 2 Urine Toxic Metals Test results back.

They show he is now letting out Mercury (what?), Arsenic (what?) and Thallium (what?) amongst others. I read what Thallium is and I cannot believe it. Some people use it to poison others! All of this leads me to confirm, even more now, that he cannot get rid of any toxins naturally like most people can. At least in his case, this all makes sense and the proof is in the results. Actual results on paper! 

On a good note, the changes these past 3 weeks have been remarkable. I still cannot have a real conversation with him, but his speech in terms of scripting (repeating songs and movie lines) and requesting have doubled! He is still stimming and a little hyper BUT:

- He no longer just says I -PAUSE- WANT -PAUSE -PRETZELS. Now it flows and he just says it all like he has been saying it forever.

- Eye contact is amazing and he is starting to string phrases along from the ones he knows already, but all at once "Mommy, come with me please, I want lunch time" HUH? What? You want lunch time? WOW! I could not believe it. I said "What do you want? Bananas? Tots? and he said "CHICKEN!" He got it, of course.

- He has been walking around the house like he has never been here, almost like studying it and learning every angle!

- Playing with toys he never even touched before!

- Jumping from his trampoline into the ball pit like all the kids do when they come here and he rarely ever did.

- Attempting to read everything he sees.

- Labeling everything he sees.

- Singing out loud, all day long. Enough to tempt me to ask him to be quiet, but I would never! lol Sing, sing! lol

- He is just sooo happy all day long.

- He has been accepting of the "open a gift" concept.

- Lastly, he is attempting to ride his new scooter (which requires tons of coordination) and is succeeding little bits at a time!!!

Perhaps he will hit a plateau or nothing else will happen, but for the first time in a LONG time I am really, really truly hopeful. It truly is amazing to experience.

Just wanted to share

10 steps forward, 2 steps back?

So much has happened since my last post! In a nutshell:


-  MRI came back normal (of course it did)

-  I now LOVE my son's teacher. Boy was I wrong. I admit it. This woman has been an angel in our lives. She cares so much. You can tell she goes home and is always thinking of the kids and what else she can do. Always reading and coming up with new ideas and projects. I will be forever grateful.

-  Some verbal gains in request form. Still no conversation. Requested Cliclitown Heroes, Doodle'bugs' lol, LililiEinsteins all shows he had no idea I had taped for him, but read the titles in the DVR taped list and requested them.

- Has been doing fabulously in reading sight words.

- Speech Eval came back, went to the insurance department and now it's sitting in the "scheduling department" before they call me...so that he can start speech at the new center.

- Contacted the school's speech therapist who had not contacted me since school started and have now begun to get regular updates.

- The return of more ear covering, humming and some tantrums. Not sure what to blame this one on yet.

- Sent in a form to begin process for Auditory Integration Therapy.

- Had a long discussion last night with my father in law and his wife as to why he eats what he eats and how he eats it. They seem to think it's really easy to get him to eat everything. I hate those conversations. They also think it's not rocket science to potty train him. Well then, come on over buddy. You do it. :( grrrrrrrrrrrr

- Had an IEP meeting this morning which went smoothly. Most of the things my son is learning are out of the IEP, but stem from the actual "goals" if that makes sense. I would say that this year, IEP or no IEP, he is getting a lot from his teachers. Luckily.

That's pretty much our update. We have had a rollercoaster year, but all in all we seem to be in better spirits lately and might be finding that light at the end of the tunnel I had lost some time ago. This year has been really tough on us. I have high hopes for this coming year!


Deep breath.

All about the mom bucket...

Is it that difficult to set appointments, confirm and reschedule as needed?

Must everything autism related be so difficult?

Let me set the scene for you. I visited the Dan Marino Center a couple of months ago for an MRI appointment. I was ready with all the needed paperwork I would need to turn in as I left to begin the ball rolling for my son's speech therapy (which I wanted him to take there). As expected, I got the neurologist to write the script for a speech evaluation. Upon leaving, I turned it in along with all of the needed paperwork. All of it filled out in clear blue ink, paper clipped and neatly organized in chronological order, with the script on top.

The girl at the front desk was pleased and said it would take 3 or 4 days for them to call me to set an evaluation date. Two weeks later, upset, I called to ask why I still did not have an appointment. I left a voice mail (because it would have been too good to have a person answer the phone.) I received a call back stating that they were ready to offer me October 2nd as the evaluation day, at 12:30pm. Not a perfect time for my son, but I went with it since these appointments are so hard to get. The next day I received a call from someone at the center in regards to setting Kai's appointment. I replied I didn't need it because I had the October 2nd date. She checked, confirmed and I hung up. I patiently waited for the appointment playing the red tape game. You know, the one where your child needs the services say, 2 years ago, but there is a lot of red tape to get through and nothing you can do, so you suck it up and wait? That game.

A month later, today, I let him skip school and stay calm at home in the hopes he would not be exhausted and be able to focus during his evaluation. I planned the entire day around the appointment. In hindsight, I did think it was odd no one called to confirm. I arrived with perfect timing and went to sign in. The girl at the front desk looked at the name and attempted to find him in the "system." When she could not find him, she questioned me as to why I was there since it seemed I did not have an appointment. Sigh.

I calmly explained what had happened with the appointment and they did find him, for a Friday appointment. No, I said, it is today. I would have much rather had him on a Friday morning instead of a Tuesday afternoon because of his schedule. Something must be wrong. She asked me to wait until 1pm when the "girl" got there. Not sure who the "girl" was.

My son was pretty calm, luckily. He only lost it once when the Calliou episode playing on the TV finished. 1pm arrived and the "girl" called me up. It seemed she was just the appointment setter who calmly told me "You don't have an appointment today , you have one Friday. A month ago all the appointments were changed, everyone was called and rescheduled since the therapist no longer works on Tuesdays."  

This, my dear friends, is where I lost it.

I know this appointment setter couldn't care less as to what we parents always go through with these appointments, but I had to say something. I had to because every time this happens I get frustrated, take it and walk out in tears, after the fact. Not that it was going to change anything, but this time, this time, I was going to raise hell. If only to feel better afterwards, even after the predictable tears. This is how it went;

"Apparently not everyone was called, rescheduled and confirmed. I wasn't. Why wasn't I called? Why, out of all of those twentysomething names, was I not called? This is unprofessional. Is this what happens at the Dan Marino Center? You are supposed to be the best. Apparently not. Do you realize how much it takes to get a child with autism ready for an appointment?

"Ma'am, I apologize, you do have an appointment on Friday." Is all she would say over and over and" I did not mean to inconvenience you. "

"What does that do for me today? I already kept my son from school today, I am already inconvenienced. I know you don't care, but I am just letting you know how I feel."

"Would you like me to write it down in a little card so that you remember the time?" 

"No! I KNOW I now have an appointment on Friday just like I KNOW I had an appointment today at 12:30pm. I don't need a card because I am an autism mom and it's all I do; make appointments for evaluations, for therapies, call this center, call that one, pick up results, schedule therapies, etc. No I don't need a little card but it would be nice if you all knew what you were doing. I know. Friday it is."

Stuff happens. I know. The poor woman must think I am nuts. She just happened to be at the end of my nice and full autism mom bucket. We take stuff and put it into the bucket and once in a while we have to empty it and it's not a pretty sight.

So guess what? I have an appointment on Friday, 9am. So they say. Yet another missed school day, but hey at least I am starting out with a nice clean bucket right?

Words are just words...or are they?

We have increased my son's Methylaid to one more added to his existing dose.

In this past week we have seen some new spontaneous words.

"Look! Over there!" which of course is random and really doesn't mean anything, but it's speech right? It's what we want and how it starts.

There has also been:


"C'mon, hurry, let's go!" said while in bed

"Go" when telling his grandma to move out of the way as she is in front of his PC

"That's a great idea" blurted out randomly

and my favorite:

"You're so haaaaappy" when he is crying instead of what he was saying before "You're so mean." I guess someone taught him not to say "mean" and instead say "happy." He still cries and blurts out "you're so happy." I's the cutest thing, yet sad at the same time. Sigh. But, hey, it's vocabulary!

We have been teaching the phrase "Mommy, can I please watch_________" to replace the simpler " I want __________" and it has been coming out more spontaneously this week as well.

I am going to dare say there has been an increase in comprehension as well.

Yesterday's comment by me "Go get daddy and tell him it's sleepy time!" resulted in him going to his room, shutting off the pc, lights and grabbing daddy's hand while saying " Come with me."  Not too shabby, huh? I fully expected him to stop halfway, forget what he was running towards and return, but that was not the case.

Lastly, while I was nagging at him prior to his nap time this afternoon (to please drink some more water), he cried and said "sleepy time!" which is what I usually say to him in response to him whining about anything prior to nap time...LOL! Role reversal. Gotta love it!

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.