Autism Sucks

So, I am sad and angry today.

I have been all week.

It's here again. The depression stage that I had successfully kicked to the curve last fall.

For the last couple of weeks he has hit a plateau. In fact, now the stimming has increased. When stimming increases you are reminded more than ever about the A word: Autism. I find it is possible to forget about it a bit when the stimming is not there.

He has increased the nose snort thing he does along with the throat one he does. In addition, he has started to shove and throw things high into the air. Things like toys, shoes, balls, etc.....

Exactly one week ago we set out for Disney. Me, the big Disney fan, was actually stupidly hopeful it would be heavenly. While some good did come out of it, it was mainly miserable. The good was ok but the bad was baaaaaaaaaaaaad. While watching the "Dreams Can Come True" show in front of the castle I almost left in full tears and with a nervous breakdown. My son wanted nothing to do with it and it was almost the end of the trip already. He insisted in shutting his eyes and not look up as he covered his ears and hummed. My mom bickered with my husband and while all of this was happening the cast was making the audience chant "Dreams can come true, dreams can come true" over and over. I could not help but look up at the stage and wish they would all shut up and go away. As I watched the audience under the "magic of Disney" spell I felt so stupid standing there while everyone chants and here I am looking at my son who wants nothing to do with the show and is stimming like crazy. What dream? certainly not mine! My dream is far from coming true. This was more like a bad dream. I fixed my eyes on the top of the castle and tried to tune it all out and waited for the happy ending of the darn show.I could not walk out because we were in the middle front section and impossible to leave out of it. I fought back the tears hard. But, enough about Disney, that's a whole other post. Just sharing why today I am feeling sad.

This post is about the rest of the week when we got back from Orlando.

On Monday we went to see our DAN doc. We were escorted into the tiny room and the doctor came in a half hour later. While the doc reviewed where we last left off last August my son stormed through the closet sized room which already contained 3 adults , a tv and some toys. Things were flying, stimming was high, he was climbing the sofa and just creating a lot of chaos. I was glad so that the doc saw how he can be but I was mortified that he was being this hyper. He really isn't really like this usually. Or is he? I started to realize that we might not notice it because at home he roams all over the place and it is spacious. He does run and climb things at home too. Hmmm

After the 40 minute consult was over I felt like I had run a marathon. I was completely beat. $200.00 for the consult and about $ 300.00 in blood tests (to be done soon), urine toxic metals (to be done soon) and a different chelation challenge (you guessed it- to be done later) I wanted to run out! All that money and he was still so far from recovered.

I went home feeling very down.

That same night, well really the next morning at about 1:50am our son woke up crying hysterically. He can't explain what he was feeling but in a sleepy, whiny, crying voice he would say "ear!" and "mouth!". I thought that perhaps he was losing a tooth and it hurt. I also thought he might have an ear infection though it has been years since the last one. This went on for what felt like forever but it was really about an hour. I called the peds office completely anticipating it would not help. My husband in the mean time wanted me to give him Tylenol. I refused because of the reports on decreased glutathione linked with Tylenol. He then used this time to mock our "natural" approach to our son and said "well, what do we give him then". The answer was "I don't know".

The nurse on call, called back. She interrogated me forever and then said Motrin and cold compresses to the ear. My husband left to buy Motrin and I attempted the cold compress but no luck. He fought me off. Sigh. Finally, my husband brought the Motrin back and with that, he went back to sleep in about 10 minutes.

I left him home from school the next day worried and to take him to the doctors office to get checked out. He barely complained . Just said "ear" a couple of times but was in a good mood luckily. Here is the story from the pediatrician's office.

I had a 10:30am appointment. I made sure and walked in at 10:30am to avoid the prolonged waiting. In the waiting lobby there was a little girl who was about 4 and her litttle 2 year old brother. They took an instant liking to my son unfortunetaly. They kept asking him questions to which he would of course ignore and stay silent doing his own thing. The little girl came up and asked "What is his name?" and " Does he talk?". I told her his name and said he spoke a little bit. The little boy started getting upset that he would not answer back. Finally, out of frustration he said " Hey! what's wrong with you punk head?" I swear he said this. A 2 year old. He then procedeeded to follow my son around screaming "What's wrong with you?". Emotionally, I did not want to bring the autism card our to the kids mother and get into it. I just did not want to talk about it. I rather think whatever she wanted and leave it at that. I redirected my son as the little 2 year old boy kept harrasing my 5 year old. The office is usually good about appointments. At 11:00am I finally walked inside uninvited and asked how much longer they would be. My son was starting to get really hyper, jumping off of things and in addition there was this situation with the little boy. They said that because I was a same day appointment it could be another 45 minutes. As usual, I failed to keep my cool and burst into tears. I hate when I do that. I told them to cancel my appointment , that I could not wait outside with my son. I stormed out. I then thought about it and walked back in. I told them that I was not being ungrateful or impatient but that my son has autism and he could not stand to wait yet another 45 minutes. Luckily my son had to go potty and while I took him, my mom pleaded our case with them. By the time I came out they called us in, put us ahead of everyone and the ped. saw our son. No ear infection, nothing wrong with him. He gave the ped a hard time while he examined him but we were out in about 15 minutes.

I walked up to the reception desk and I thanked the girls. I told them that this meant a lot and that they have no idea how much it helped. Before I could continue to thank them, I turned and caught my son right when he shoved a little toddler down to the floor. I rushed over there, picked up the toddler and apologized to him and apologized to the mom. The mom gave me the death look and I made my son say "i'm sorry" to the toddler. BUt you know, it was more echolalia than anything. He had no idea that what he did was wrong. So, I took my son by the hand, said another thank you as I walked out with the toddler still screaming in the background.

I wanted to dissappear.

I cried on my way home. It had been 6 continous days of this, of autism all the time, day and night! It's never going to stop is it? I mean, I am pretty resilient. Yes, I am a crier but I get over things pretty quickly and move on. They are usually bad at the moment and then I can focus again. But this? this has been wearing me out completely. I might do another posting soon all happy and chipper but not today. Today I am mad. I am angry.

The frosting to the story comes from the reports from school yesterday and today of the increased stimming, shoe throwing and whining. Nice.

If I lived in a bubble everything would be just fine. We have our routine, our son is usually happy and we live. But when put in the very real day to day situations and with other kids, things suck. I am tired of explaining my child's behavior and of pulling out the autism card. I am tired of "friends" assuming that because we have a house with a yard, semi nice cars and are not sweating the gas bill we are not entitled to be angry about our lives! There is no price on the health of your child. There just isn't. I am living with an incredibly cute and happy child who is in his own world. I mean, even a blind or deaf child can have a conversation with you and tell you how they feel. That they are hungy or that , hey, I really like it when I wear that red shirt. It is sad when you are put into that situation of analyzing how much worse it could be or how someone else's misfortune might be better than yours but it's reality.

I am pissed off at the world today. I don't understand this world. I don't understand kids suffering. Why? what good does it do? Is God trying to teach me some sort of lesson because really I am not getting it and if anything it's making me into an ugly version of myself. I don't feel like looking at " on the bright side" today.

I want to scream at the Disney show creators for making the audience chant "dreams can come true". B.S. well, I take that back, I guess they can for some people, just not for me. Why does my little boy have to go through this? Why do any kids have to go through anything remotely cruel?

This is me venting. Take it as it is: one really sad and angry mom

So quiet...and the mouse

This past week has been pretty much QUIET.
I was so excited with each week of gains we had been having but nothing this week.

Is this the plateau I was worried about?
I hope not.

We leave to Disney World on Thursday!
Let the packing begin!

He has been on the Disney website staring at the castle over and over.
He doesn't understand when I tell him that we are going to see Mickey and the castle.
He just gets excited when the fireworks shown on the website begin.
He also loves the Mickey Sing a long video which is filmed at the park.

Since starting to understand the days of the week a little bit, I keep saying "Mickey on Friday". But, he just smiles, skips away and moves on to something else.

We visited last June.
He did pretty good and had a good time.
Fingers crossed for another good trip.

The hotel is lined up, refrigerator and microwave reserved for all of his special food and supplements. We are taking the toaster oven and a cooler with all his stuff.

I have my dx photocopy as a back up as well as last summer's Guest Assistance Card which was a blessing! Hopefully this will make it easier to get a new card without any hassle.

It is supposed to be in the 50's at night, brrrrrrrrrr, remember we are Florida residents so 50 is really cold for us. I just hope it does not rain. :(

We have booked 2 character breakfasts too!

Getting excited but as usual , nervous about all the what ifs.
Will post back soon.

Oh yeah!

More news from the DMSA front:

- requesting "lunch time " " dinner time" versus just the usual "crackers" which doesn't really means he wants crackers but rather "feed me"

- when scolded for touching the tv he looked up and said "no, it's ok!". He has never defended any actions he has been in trouble for. Usually there is whining or crying involved not words!

- rode the carrousel at the zoo! twice!

- while watching a show at the zoo he had a snack, bounced to the beat of the music playing AND clapped his hands without being prompted. Usually I have to remind him to clap! not this time!

- on his first, second and third day back to school (today!)after the break the teacher reported increased verbal skills, interest in the other kids, better eye contact and no whining/crying all day long! They are not aware of his chelation treatment.

- went on a field trip to a farm in school in the big yellow school bus and sat with absolutely no problem.

- when I picked him up from school he requested "I want yellow school bus" to which I had to say that perhaps "soon" though really I felt like stealing the bus and taking him on a ride. It is huge that he requested this!

- during nap time, requested "MY socks". # 1 he never requests anything at nap time # 2 if he would, he would usually just said "socks" # 3 he doesn't say "MY" anything. This was his first MY request!

In the words of Queen:

"Is this the real life-

Is this just fantasy-

Caught in a landslide-

No escape from reality-

Open your eyes-

Look up to the skies and see-"

We are ecstatic!

Can it really be that all of this is happening?

Then again, tomorrow makes 1 week from the parking lot tantrum incident. Today is suppository day. Let's see what tomorrow brings.

Fingers crossed!

Never a dull moment

We were leaving speech therapy and my son wanted to stay and watch the tv in the lobby. I tugged at him to walk with me instead of staying. He jumped in the air and landed on the floor right outside the therapy center. Screaming with his throat, back flat on the floor. He did this like 7 times or so until I picked him up like a big heavy sac of potatoes and carried him halfway to the car. I put him down because he is heavy and I thought he was better. Bad idea. He jumped high in the air and dropped himself on the floor screaming like I was killing him, crying with his throat. He was not there…he was gone, blank stare and all. Everytime I was successful in picking him up, he would do the same and attempt to run back to the lobby. When he could not, he would jump and drop again. To make it better he then would roll over and over and over in the middle of the parking lot as he screamed. I finally gathered some strength, picked him up high again as he would throw his head back in full tantrum and pinned him with my shoulder to the car seat to buckle him in. Once buckled he was in full rage…screaming and would not let me pick up my keys from beneath him (which I had dropped to buckle him in) because he was purposely throwing his legs up towards my head! I finally pinned them down and got my keys. I closed the door and walked around to my side and I could hear him outside of the car screaming and kicking! Wow

It was a trancelike transformation because he had been super vocal, singing and so happy all day long. Who is this person crying? I drove back and finally broke down crying. I was super calm as he did it. In fact, I stood watching him for some time trying to figure out what the hell he was doing and why! I had a complete poker face the entire time until I started driving. 5 minutes later he was happy like nothing.

Got home, was happy and when it was nap time he did the same thing. I usually lay down next to him until he falls asleep. I just stayed there as he screamed and screamed. He is doing this stimming think that is like he is trying to catch his breath (but it' s not precisely that) it's like he had some pain but can't and doesn't know to tell me. His heart was racing fast. I finally caught him off guard and held his face really tight and said "sleepy time now!" and he cried a teeny bit more, turned over and crashed...all within 15 seconds of me doing that. Like I snapped him out of it.

So much for my good news. Must be the side effects I hear about all the time from chelation; that sometimes it gets worse before it gets better? But hey, will take 30 steps forward, 2 back ANY TIME!

On a funny note, they just called from the center about some financial thing and I completely thought they were calling to find out about the mad woman who was carrying her crazy child against his will to the car today..lol gotta find the humor in it right?

The fog is lifting!

Got 2 Urine Toxic Metals Test results back.

The first one was unprovoked.

The 2nd one was provoked by a chelation agent (DMSA) we started giving him 3 weeks ago on a weekly basis. It shows that he is now letting out Mercury (of course), Arsenic and Thallium 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 . This points to perhaps extermination and his flu shot which contained mercury to make him go into some kind of toxic overload. At least in his case, this all makes sense and the proof is in the results.

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 says "CHICKEN!" so he got it because usually I have to give him ALL the choices and then he picks. This one he chose on his own.

-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!

-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 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" concetp.

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

Perhaps we will hit a plateau or nothing else will happen but for the 1st time in a LONG time I am really, really truly hopeful. The chelation is extracting all these evil metals and crap that are in his little 40 lbs body! and it's taking immediate effect! It truly is amazing to experience.

Just wanted to share