"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.
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?
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 and kept fighting it. We left and rescheduled. The second time around, 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 third 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. A friend says it includes Rubinol,Versed and Nembutal. Does anyone have any experiences with these? I will mention it to our pediatrician next week and see what he has to say.
Let the worrying begin.
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...
"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."
