Words are just words...or are they?

We have increased my son's Methylaid to one more daily 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" so he still cries and blurts our "you're so happy" lol it's the cutest thing yet sad at the same time. Sigh. But, hey, it's vocabulary right?

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

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

Yesterday's comment by me was "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!

True Colors

The beauty of beginning a new supplement is that you are just so much more aware of everything your child does that you 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 doc.

Ever since we did, my son has just 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.

He finds this cd with the song True Colors and plays it over and over and becomes seemingly sad. Out of the blue! What is it? 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. 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 DAN doc and 50 minutes back. Do I count the gas I spent on my suv as well? I should right? Get there, speak 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 alltogether. Then off to the organic supermarket for another $200.00 in 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 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 extermination 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 a All About report on my son for his teacher including a section on 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. Oh yes, that bubble burst really quick.

We woke up on time, got everyone ready, camera charged and we are 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 arrive and even find parking right away. Imagine that! We go to the cafeteria as told and wait for the "orientation" to begin. I never did receive my letter stating where I had to go and when I called I was told to just go to the cafeteria where all would be explained. In a haze of pta bulletins, uniform tables and others we made our way through. It was now 5 to 10am and nothing. Finally someone walks up to the mic and announces that we should all be in our classrooms or we were about the miss our orientation. Hmmm, that's odd. I ask the woman on the mic where we were supposed to be. She replies that I was supposed to go to the front office for that.


This is where it becomes fun. 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 walk him out and decide to stroll on campus while I send my husband to the front office to find out. While "strolling" we run into his pre-k teacher assistant from last year. My son got very excited and 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. She insisted we went by to say hello to the pre-k teacher and 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 was choosing the 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 am walking my husband sticks out his head and announces " He is not even registered. They can't find him -in the system" . Oh dear. I take a deep breath and walk over to him. His pre-k teacher tells 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 prek 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 and after months of red tape and IEP meetings? I am sure they saw the smoke coming out of my ears.

I decide to walk out and let my husband duke it out and take him to where I was told he should be at. The teacher seems clueless and has no idea who my son is and why we have invaded her class. My son, in all of this, is upset his prek teacher left and probably thinks we are insane in all of this. Perhaps he is right. I explain to her briefly what has happened and she listens as my son walks all over the room, turns the tv on (why is there even a tv with a Barney tape in here), touches all of the computer buttons available and scrambles all over the place. Deep breath. When she is done talking to another set of parents I re-introduce myself and hand her my All About report on my son and briefly tell her about him.

My husband walks in with the head of the ESE who apologizes and confirms we are in the right place. He joins me in what seems like a lost cause. The teacher says we don't need anything for Monday and to just show up. She is nice but not sure if that will get anything done or how much autism experience she has but I think not much.

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

I leave and 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 are still excited. What is that saying? Gluton for punishment? yeah, that.

There are no parking spots available. We hop out of the car with all the bags in tow and walk to the meeting place;the cafeteria. Wouldn't you know it, the meeting place is literally next to his old pre-k class which causes a lot of excitement for my son at first and then a complete breakdown when they leave without him. My poor baby. I attempt to explain what is going on and he was not having it. He was very upset about not joining his old class. The new teacher announces "ok, let's go!" She holds 2 of the kids hands and walks. And walks, And walks without ONCE looking back to confirm the rest of the kids and parents are 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 and 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!

I walk in to find a semicircular table and the teacher extremely overwhelmed attempting to get them all seated. She hands him a purple name tag and asks 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 good clueless as to what was being said. I fought the urge to go help him do it because 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?

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?

Let the worrying begin...

So, we will be going for the brain MRI.

Sigh.

Just found out from a friend that he will have to have an iv in place. Wow.

All I can think about was the experience we had a couple of years ago attempting to retrieve blood. He would not stay still for it and kept fighting it. We left and rescheduled. The 2nd time they strapped him to this jacket with a board on the back which prevented him from moving. Choking back the tears was extremely hard on this one. He was petrified. He kept looking at me wanting me to make it better and I couldn't. All of that and the blood just would not come out.
Left again and rescheduled a 3rd time when they were finally able to get blood samples.

In this case, the iv will flow in but how on earth will they get him to lay down on command? No way! Even if Barney is playing on tv, he will not stay still with the iv in his arm. He will also attempt to take it out.

My sweet sweet baby. I can't believe he has to go through this.

In addition, I am worried about the ingredients in the sedation formula. Just a little paranoid. There is no explaining this to the nurses because they will roll their eyes. You know, like they do when you question vaccine safety. A friend says it includes Rubinol,Versed and Nembutal. Does anyone have any experiences with these? I will mention it to our DAN doc next week and see what he has to say.

Let the worrying begin.

A visit to the neuro...

Gotta love doctors and procedures.


Let's see, arrived at 12:20 for the 1pm appt. because I had to fill out paperwork. Paperwork that was given to me at 5 till 1pm at which point 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. Into waiting room with no toys but a clear view of the other room that was full of them. Nurse insisted he stay in there 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 20 minutes later, the doctor appeared. 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 dr. came in?

The Dr. comes in and says " 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" . 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 sent 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? If he only knew all the supplements my child takes!

Ok, that was my summary. I will do the mri and genetic testing. Hoping his DAN doc will do the bloodwork so I don't have to go to a Quest or Labcorp place. I will ask his dr. what he thinks of sedation for my son and what it's done with and take it from there.

Thanks for reading my rant.

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 and then 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 baby. I won't get into all the details now as to how we came into autism but I can say that if I fast forward to now, there is not too much smiling going on by myself and my husband.

We are lucky to have the happiest boy! 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, 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 line. 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 I guess.

Why be so negative? Why not? Being positive doesn't get me anywhere. 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 about the meeting 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. Last teacher barely knew how to handle the autism kids and had to be told about the GFCF diet because she had never heard of it. I hope this one is up to date with all things "autism".