A fork in the road...

SIGH...

What a month!

I feel like it's never-ending. I am at a point where I feel like throwing my arms up in the air and walking away, but of course, I can't do that.

I have friends whose children have incredibly improved by doing the same or even less than what I am doing with my son. But, just not us. I won't turn into one of those parents who swear off trying new things and nay-saying just because it did not work for them. I am, however, turning into a disappointed and sad mom. Or an even sadder one than before. Not disappointed in my son, disappointed in my lack of ability to help him.

Why can't it work for my son? It's worked, but only a little.

He is miles away from where we started, but double the miles away from where we need to be. I want out of this club. I don't want to be a part of this autism club anymore.

A friend recently posted on one of our group boards how she wanted out. She wanted a normal life and not everything to revolve around autism. I hear ya sister. I feel the same way. I want out as well.

It also doesn't help that our very own "club" is just so divided. If I hear one more parent accuse another of not loving their child enough because they are treating them or that because they are treating them, they are not accepting their child as is, I am going to explode.

Screw the kumbaya talk people!

Our children are special TO US, and they are amazing TO US. The world is a cruel place, and it will be a long way before we reach a point (if ever) where people are compassionate of those with special needs. It is a dog eat dog kind of world, and our kids are being swallowed whole in it. Yes, we can be mother warriors all we want, but at the end of the day, we are still in the wrong kind of "special" group, and I am so sick of it.

It is never more evident than at the playground or birthday parties. Why do we even bother going? I don't want to be any one's charity case or anyone to feel bad for me. Urgh! Sucks.

So much money spent on this journey. SOOOO MUCH!

We are now with a new doctor. Woopidyf'indoo. Why get excited? After all , I got excited when we first put him in an entirely integrative treatment school. Then when he did music therapy. Then when we started the diet. Then when we started a holistic approach.  Then when he did the hyperbaric. Then when we added new supplements. Or wait it must have been when we went all natural with our cleaning products. Or when we bid farewell to the microwave. Or when we bought all new cookware. Or when we started using distilled water only. Or, or, or , or....you can only get so excited so many times about the new "it" thing.

Where to go next? I DON'T KNOW!

Can we move to a remote island somewhere?

After all, my son is so happy. Completely oblivious to anything going around him. If it wasn't for that great kid, and his sunny disposition I don't know how I would have made it this far.

He would be so happy on that island. Just living without being stared at, poked at, discriminated against, and treated! But that's not reality, is it?

Nope. So we move on to the next best thing as always.

Now, looking for private schools so that he can get even more one on one instruction. Oh yeh!

I assure you I am not always this cynical, but there are just some days.....SIGH

Ok, rant over.

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?