Autism Sucks

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 I am 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 a miserable experience. 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 looking 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 chanted. 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. 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 holistic doctor. We were escorted into the tiny room and the doctor came in a half hour later. While he 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 and stimming was high as he climbed the sofa and just created a lot of chaos. I was glad so that the doctor saw how he can be, but I was mortified that he was being this hyper. He really isn't really like this usually. 

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), and a urine toxic metals test (to be done soon). 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 was saying "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 sad 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 with no success. 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 took him to the doctor's office to get checked out. He barely complained . Just said "ear" a couple of times, but was in a good mood. 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 lobby as we waited, there was a little girl who was about 4 and her little 2 year old brother. They took an instant liking to my son, unfortunately. They kept asking him questions 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 proceeded to follow my son around screaming "What's wrong with you?" Emotionally, I did not want to bring the autism card out to the kids mother and get into it. I just did not want to talk about it. I rather let her think whatever she wanted and leave it at that. I redirected my son as the little 2 year old boy kept harassing 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 off 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 pediatrician 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 disappear.

I cried on my way home. Shocker. It had been 6 continuous 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 while happy and chipper, but not today. Today I am mad. I am angry.

The best part of this story comes from the reports from school yesterday and today of 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. 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 hungry 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 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, filmed at the park.

Since he's 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 photocopy of his diagnosis 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 50s at night, brrrrrrrrrr, remember we are Florida residents. 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:

-  Requesting "lunch time" and " dinner time" versus just the usual "crackers" which really means "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 carousel 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! 

- 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 have 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 one week from the parking lot tantrum incident. 
Let's see what tomorrow brings.

Fingers crossed!

Never a dull moment

As we left speech therapy, my son wanted to stay and watch the TV in the lobby. I urged him to walk with me. He jumped and landed on the floor right outside the therapy center screaming loudly and his back flat on the floor. He did this like 7 times or so, until I picked him up like a big heavy sack 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 again and dropped himself on the floor screaming like I was killing him, crying using his throat. He was not there…he was gone, blank stare and all. Every time 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 things better, he then rolled 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 threw his head back in full tantrum and pinned him with my shoulder to the car seat to buckle him in. Once buckled in, he was in full rage screaming and not letting me pick up my keys from beneath him (which I had dropped to buckle him in as he purposely threw his legs up towards my head!) I finally pinned them down and got my keys. As I closed the door and walked around to my side, I could hear him outside of the car screaming and kicking! Wow!

It was a trance-like transformation. Earlier, he had been super verbal, singing and so happy. Who is this person crying? I drove back and finally broke down crying. Although during the episode, I remained super calm. I stood watching him for some time trying to figure out what the hell he was doing and why! Five minutes later, he was happy like nothing happened.

We got home and he was happy, but 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 a new sim thing. It's  like he is trying to catch his breath (but it' s not precisely that). Maybe he has 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!" 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 some of the supplements? Sometimes it gets worse before it gets better? But hey, I will take 30 steps forward and 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. Ha! Gotta find the humor in it, right?

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

No, excuse you!

My son has autism.

Kids with autism do random things.

It is what it is.

I was at my son's speech therapy center, not Chuckie Cheese or Gymboree. 

My son happened to be in a very good mood today. This means very hyper and friendly. This also means going up to strangers and giving them hugs and getting really up close in their face to look at them. It's called, stimming.

While waiting, he was all over the place: climbing on chairs, going up to people, smiling, and having a good ole time. He saw a woman with a stroller as she is attempted to exit the room. He ran over there before I had a chance to jet out of my chair, and jammed himself between the door and the stroller.

Clearly he wanted to purposely annoy this woman right? He purposely wanted to be a pain. Not the case, but you would have thunk it by the way this mom reacted. She started screaming. Screaming! As if my son had hurt her daughter! Meanwhile he smiled and tried to get a good look at the cute little girl in the stroller who is saying "hiiiiiiiii." "ExCUUUUSe me, ExCUUUUSe me" screamed the mom several times. This was all a matter of seconds, but I made it as she was pushing her stroller out the door at any cost and all I could manage was a trailing " He DOESN'T understand" as she fumed off rolling her eyes.

Oh, I'm sorry. Yes, my son innocently wanted to take a look at your little girl. Sorry he did such a horrible thing. Saying "excuse me" to a boy with autism is going to make him say "Oh shoot, yes, of course, what was I thinking running into you?" Really. Yeah, that works.

A half hour went by and my son happily came out of speech therapy. As I finished getting the details of his session from his teacher he ran to another little girl. This one a little older than him. She was in a wheelchair. I ran behind him but he is just so much faster than I. He tried to touch her eyes and succeeded. He was not hurting her, just touching her eyes. Is it the right thing to do? No. Is it a pleasant thing to feel someone do to you? Not really. Is it a devilish thing to do? I don't think so. Not if the "attacker" weighs no more than 40 pounds and has the biggest smile on his face as he says "baby" which is what he calls all little kids. I sternly called out to him to not touch but not before the girl's father gave him round 2 of "Excuse me! Excuse me!" After I took my son's hands away, apologized to the man and told my son "Do not touch" I turned around to the father and managed to say "He does not know not to touch. He does not understand it." He also rolled his eyes and continued talking to the woman next to him as I walked away.

Once in the car I fumed at both of these incidents. I understand this man was upset at the world. I have been there. I have plenty of bad days, but screaming at a little boy at a center where it is obvious every single child has some kind of issue is just ridiculous to me. I would never do such a thing. In this center out of all places, I am the most accepting, embracing and understanding person to all the kids I encounter. My heart always breaks when I see them walk through those doors. Why? Because like I said, it's not Gymboree or Chuckie Cheese. They are not there for fun. They are there because of a problem (s).

I cannot tell you how many times kids have come up to my son to take away his toy or to do something similar. It is what it is, it is what some do. I have never screamed at them. In fact, before I even direct any words to the other kids I look for the parent who I am sure is running huffing and puffing behind them. When that's not the case then with a smile and in a non-accusing way, I reposition my son or retrieve the toy and say something like " no no" or "you want to play?" If a parent apologizes I simply say "don't worry about it". That's it. No drama, no screaming, no nastiness. Is that so hard?

In hindsight, I wish I could have said to both "No, exCUUUUSE You! Excuse you for not understanding that he did not mean to overstep his boundaries, that if he is doing such an odd thing and is at a center that is mainly for autism, then it must be because he has autism or something wrong with him. Excuse you for not seeing that I was right behind him and not hiding behind a magazine ignoring his behavior. Instead I was rushing behind him to make sure everything would be OK. "

Come on now.

I am alive...

Hello!
I have been gone forever. 
So much to update!


1. My little chipmunk is doing so good! Guess what? He is potty trained! Well, almost. For #1 that is. It is a huge step! I cannot believe it. I knew that once he did it, it would stick. He is older now and can pick up things quickly once he "gets" them. No magic formula. We did what we always did and would give up on. Lots of water, no diapers in sight and we would make him sit in the potty. I would let him watch the portable DVD player while sitting. It coincided that he really really really had to go. It was bed time already and he had held it ALL DAY. He started to whimper for a diaper as I changed the movie playing in the DVD player. He was so interested in what I was going to play that he let it go. Yup! He peed. He did so much that I had time to call my husband and my mother and we all started chanting for him excitedly! Woohoo!

The next day he went in school once and once at night. The third day was the same. By the fourth day my husband sent me a text saying he requested to go while at the park with him and went standing up! That same night we ran into him going on his own. Instead of coming to get us to take him, he just walked in, turned on the lights and went by himself! Hilarious to see him doing such a big boy thing. I love it.

Now on to #2. Not as easy, but I am confident the day will come. He brings us a diaper to put on him when he has to go and holds it until we put it on. In a couple of weeks we will start with round # 2.

2. Let's see, what else.....he has been improving on sight words tremendously. Learning pretty quickly and seems to like it!

He now regularly uses his staple sentence of " Mommy, come with me please" " or when reminded "I want_____" but much much easier than before.

3. Christmas. We have decided to wrap some gifts already assembled, leave others out and let him discover them on his own. He usually walks right by them so we will see. He actually saw one I was wrapping a little while ago and ran to take it away from me. I told him he could touch it after nap. Of course it will disappear after naptime and he won't remember it, but the good news is that he was interested!

4. I remembered one more thing! He tried pop corn at school! That is huge considering he eats the same things all the time.

5. He is also hanging from his arms more and more at the park in school with the teacher. This is a big change in upper body strength he never had before. It's pretty cool to see him swing like a monkey!


That's it for now! Thanks for reading. 

I hope you all have a fabulous holiday!