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!

Update on us...

And so it starts.

The nausea? Morning sickness? Nope, well yes a little nausea but I am talking about the fears. We went to the doctor last week, had a sonogram and there it was... a beautiful egg sack, yolk and all and even a filckering heart beat. Sigh.....so far so good.

We are trying to not get overjoyed until the next appointment which is when we actually hear the heartbeat. Sigh.

Baby steps, right?

My husband is very guarded and fearing more autism in our lives. I can't really blame him, except I tell him we know the signs and what to do for extra early intervention if need be. After all, we have been at this for quite a while now. I know though that fears or not, it will take one look into the baby's eyes for him to melt again like he did with our first!

Only time will tell. For now, I leave the fear in the hands of my husband and, although I too am scared, I will try to focus on all the positive stuff that comes with being pregnant.

By belly is starting to pop out. Already 35 1/1 inches! up from 34" last week. 8 weeks tomorrow. 4 more weeks and I will be able to breathe slower and calmer.

On to research organic everything: mattresses, PJs, clothing and then glass bottles, natural toys, etc...This is going to be interesting. What about formula? Organic formula? What is the alternate option to milk other than cow's milk and my own?

I think this is going to be great for my son! I am mostly excited to see and experience their interaction. Everytime he sees a baby awake he says "baby sleep," won't work but it will be cute to see him try!

10 steps forward, 2 steps back?

So much has happened since my last post! In a nutshell:


-  MRI came back normal (of course it did)

-  I now LOVE my son's teacher. Boy was I wrong. I admit it. This woman has been an angel in our lives. She cares so much. You can tell she goes home and is always thinking of the kids and what else she can do. Always reading and coming up with new ideas and projects. I will be forever grateful.

-  Some verbal gains in request form. Still no conversation. Requested Cliclitown Heroes, Doodle'bugs' lol, LililiEinsteins all shows he had no idea I had taped for him, but read the titles in the DVR taped list and requested them.

- Has been doing fabulously in reading sight words.

- Speech Eval came back, went to the insurance department and now it's sitting in the "scheduling department" before they call me...so that he can start speech at the new center.

- Contacted the school's speech therapist who had not contacted me since school started and have now begun to get regular updates.

- The return of more ear covering, humming and some tantrums. Not sure what to blame this one on yet.

- Sent in a form to begin process for Auditory Integration Therapy.

- Had a long discussion last night with my father in law and his wife as to why he eats what he eats and how he eats it. They seem to think it's really easy to get him to eat everything. I hate those conversations. They also think it's not rocket science to potty train him. Well then, come on over buddy. You do it. :( grrrrrrrrrrrr

- Had an IEP meeting this morning which went smoothly. Most of the things my son is learning are out of the IEP, but stem from the actual "goals" if that makes sense. I would say that this year, IEP or no IEP, he is getting a lot from his teachers. Luckily.

That's pretty much our update. We have had a rollercoaster year, but all in all we seem to be in better spirits lately and might be finding that light at the end of the tunnel I had lost some time ago. This year has been really tough on us. I have high hopes for this coming year!


Deep breath.

Good week...

Having a good couple of days so far. We switched from his soy milk to almond milk after the O'soy yogurt scare and coincidence or not, he has been very focused and peaceful! It's been a week now. It's one of those..was it the extra probiotic? The new yogurt? Or the almond milk? Coincidence? Hmmm like everything in autism. Who knows!?!

He has continued to work on tracing his name and matching very well. His teacher wrote a note that he matched cards with the months on them to a board with the same names. I did not believe it, but she was right! When I tried it at home, not only did he do it but he did it quickly and accurately.

We have also noticed he is holding his containers during lunch the right way! Isn't it sad the stuff that we come to admire? I wanted him to finish his banana which was cut up inside a plastic container. He held it with his left hand, angled it towards him to reach better and pinched it with the fork on his right hand! Just last month we had to show him hand over hand (like we have been doing forever) that he has to support it with his left hand or it will slide off the table. Here he was doing it all like second nature.

Woohoo! Baby steps but still getting to that final goal!

Lastly, he has been getting even better with his dancing. My son loves to dance and usually does so with great rhythm: always on beat. It's gotten only better. He craves choreography from me which I gladly do of course. Loves to follow along as he looks in the mirror and flashes that amazing smile. He is so happy and it's one of those things that helps us get through all the negative stuff. That beautiful giggle and smile....Sigh.

The MRI story...

Beep, beep, beep....the alarm goes off.

It is 6am and time to leave for my son's brain MRI.

Exciting stuff, only, not so much. Sigh

I got everything ready and at about 6:40am changed my son while he was still sleeping and carried him to the car. In his sleep haze, he asked for his ABC music CD. Never misses a moment does he? So cute. We arrived to the empty parking lot and got into the waiting room. We signed in and waited for someone to come out with instructions. Once she did, we filled out all the necessary paper work and into another room we went. This one with all sorts of electronics and buttons my son wanted to touch. He did not know what to do, so he just paced back and forth checking out all of the equipment.

I handed the nurse the list of the 15 supplements and vitamins my son takes to make sure there is no adverse reaction to anything they will administer when combined with these. I got the usual questions as to why we give him this and that. I had my binder with me so this time I was able to give perfect answers.The two nurses and technician all looked at me like most people look at me when I talk about any type of intervention, wondering if I have lost all my marbles. I assure them my marbles are great, all there and shiny too! But really, I explain that we see one of the top holistic, licensed doctors and that at some point we have to trust someone to help our child move along. 

They attempted to take my son's vitals, but as usual other than weighing him in (39lbs!) they can't get anything done without him screaming and fighting them all. To administer the versed to calm him down, it took three people to pin him down to the bed and a bed strap to get it done. The nurse slowly administered it with a syringe in his mouth. Not so fun what you get used to doing these days. The second time to pin him down was to apply the IV. That was another session of adults pinning down my little boy. He screamed using all of the words he knows to make us stop: "all done, bye bye, stop, stop it." Completely heartbreaking. By now, the versed took over and he started to get groggy, though not nearly as much as he needed to be. They wrapped a diaper around his hand to prevent him from pulling the IV off and my husband carried him outside. They have this huge trailer with the MRI machine inside. A big, scary, intimidating machine. My husband placed him on the bed and kept a tight hug grip while they administered the next drug: Nembutal. They had four individual doses of which he ended up requiring only two. They gave him one at a time and saved some in case he woke up during the procedure. 

It was frightening, but in a weird way cute to see him fight and slowly give in to the drug because it was like he was drunk. He kept talking slowly and slurring all speech. My sweet boy. He finally fell asleep and they laid him down and strapped him in. They put a sheet over him to make sure he was not cold and asked us to wait in the front lobby. I thought the time would go by slow, but it thankfully did not. Before we knew it, 30 minutes later, we were called in to the recovery room. He laid there out of it completely in sleepy land. The nurse administered 180ccs of IV saline fluid to push the drugs out of his system. He slept through all of it. After finally getting him to drink 3 ounces of water, he was released.

My husband carried him to the car and buckled him in. Luckily, it was only a 12 minute ride. Because he was so out of it, his head was completely bobbed down most of the ride home. We got there and carried him into bed. I got prepared for a 6 hour period of laying in bed with him as he came out of it. Boy was I wrong! Ten minutes after we arrived, he bolted up on the bed and attempted to jump off and run to his room like he usually does except he had no strength in his legs and arms yet and we had to keep holding him off as he fought us off. In his mind, he was strong enough. The nurse told us this would happen, but I had no idea it would be so bad. By the end of 20 minutes he was back to his old self! Just a little more drunk looking. The next 2 hours proved challenging as he did not want to be shadowed and insisted on running all over the house. He fell twice, but luckily nothing bad, just slip and slides. I was completely exhausted. Once we knew he was not wobbly anymore, we finally let him be. Completely exhausted I tell ya.

I wanted to note two things that happened almost right after we got home. As I carried him to the playroom floor and was lowering him to the floor, he looked at me with his sleepy eyes and said "Hello, hello mommy." Huh? This was huge! He has never greeted me. The extent of him greeting me is usually a big grin and running towards me. This time, he deliberately made eye contact and greeted me. I was in shock. I said "Hi baby, how are you? How do you feel?" but of course, no answer. He was in and out of his world and the drug world that he still had in his body. Minutes later he noticed the bandage on his hand from the IV. Usually, he calls bandages "stickers" and he is terrified of them. Taking one off means more pinning down or letting them fall off on their own.This time, he noticed, looked at it and slowly draped his arm over my leg followed by grabbing my hand with the bandage free one to signal me to take it off. I did, thinking he would pull his hand back and he did not. In fact, when I finally peeled it off, he felt the area where it was like he was now relieved it was gone. Mystery number # 2. Why the sudden lucid moments? Was it the IV ? Did that liquid running through his body help in any way? Was it just coincidence? Am I over analyzing this? I think there was a 3rd one, but cannot recall right now. Mommy brain.

At around 4pm, the phone rang. They called to say the MRI results were normal. Really? Normal? That was it. A 15 second call for results. I wish I could sit there with the neurologist and scan every inch of that MRI. I fear they just see this as routine, scan it briefly and push them aside. Not that I want something to be wrong, but it seems so casual that a brief phone call ends the entire MRI issue. I have requested copies on disc to perhaps get a second opinion. I have heard of some of the white matter on the MRIs signaling metal toxicity. Will have to look into this. Can't ask the neurologist because he says he does not believe in magic, as in, don't come to me with any other theories that are not ABA, ST and OT intervention related.

So on with our detective work in the search for my baby's recovery.

Just this afternoon while in the car, he pointed to the DVD screen where the Care Bears movie was playing. He rarely points. could this be another gain?

A not so funny follow up on appt. setting

Riiiiiiing riiiiiiiing...

"Hi I am calling from Miami Chlidren's to confirm your daughter's appointment for a speech evaluation tomorrow Thursday at 8:30am?"

INSERT MY ANNOYED VOICE HERE

"You mean the Friday speech evaluation at 9:00am, not Thursday, for my son?"

"Oh! Let me check, yeah, hee hee, Friday not Thursday. Sorry hee hee"

"Fine. Friday at 9:00"

Click

ARE YOU KIDDING ME?

They still cannot get the date right?

(In case you missed my appointmet drama, please see my posting regarding it below)

More evidence of harm?

Tuesday night.

A quiet weekday night out on the town. My husband and I decided to go to dinner with my FIL and my son. It had been a tough day thanks to the incident I described in my last post.

We headed to the local J. Alexander's restaurant. It is a small restaurant that holds a maximum occupancy of about 200. It was busy, but not full to capacity last night.

While having dinner I noticed a mom struggling with her son on her way to the bathroom. He was about 10 years old or so.The boy was stimming, arms flapping and throat sounds and resisting her redirection. AUTISM.

About 20 minutes later the large party sitting next to us got up to leave. Another boy around the same age jumps from his chair to the floor, where he giggled uncontrollably, arms retracted and in his own world. His shirt read "The Victory School" (a local autism school). AUTISM.

I glanced at my son, 5, who was in his own world watching Clifford on DVD while we dined. AUTISM. He glanced back up at me, sweetly smiled and went back to his DVD.

1 in 150 kids have autism and about 1 in 94 boys (mol) are part of that group. I saw 3 in a time span of about 40 minutes in one place alone. What are those odds?

But no, there is no autism epidemic right?

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?

He did it!

TGIF! and what a Friday it is!

I went to pick up my son from school and the teacher reported that he not only wrote his name on his own, but he did so without the one below to trace off!

I gave him some time when he got home from school and set up his usual homework area. We did letter tracing and name tracing. Then came the test; I asked him to write his name.

His cheerful demeanor changed and he immediately fussed but lo and behold, I held his hand and helped with the first initial of his name and he did the rest.

It's not perfect by any means but just several weeks ago he had no interest in holding a marker or crayon!

I did the silly mom cheer and dance.

I cupped his face with my hands and made sure I had his eye contact and told him " GREAT JOB, BABY!" He smiled, said his usual "excuse me please" to be allowed to leave and off he went happily skipping to watch an ABC video.

Time to celebrate!

Woohoo!

The Yeast Monster

Dinner party at home.

FIRST dinner party in our new home.

10 adults, 4 kids (mine, a 1 year old girl and 3 year old twin boys)

Worked really hard all day getting ready.

Dinner party a success except maybe:

Our son spending more than 1 minute total (in the 3 hours everyone was here) with anyone or mingling with the other kids.

Lots of stimming in the way of ear covering, closing/flickering eyes, a lovely noise of a hackling throat like he is going to spit but doesn't and inhaling so hard we think he will really hurt himself because it's so harsh. It's the new dose of stimming of the month I guess. There are some odd ones I don't know how to even put in writing!

The night was capped off by one of those memorable autism moments. I stupidly decided that I would attempt to give him a spoon of a supplement instead of hiding it in his food. Bad idea. It was a bad idea the first time when he spit it out and then sprayed it all over himself, myself and anything directly in front of him. Also the second time when I so stubbornly attempted again. I had to literally pin him down to give it to him and he spit it right out. I was so angry at myself and at the situation. Not at him. I know this is not him, it's the autism acting and it pisses me off. He knew mommy was mad, but couldn't say anything. Amazing how he fights me one second and the minute I stop, he goes right back to what he was doing like nothing ever happened.

I am having one of those weeks where I am just down right fed up. Is it going to change anything? No, but I am human and cannot help how I feel.

The last 2 weeks it seems we have been hit with a dose of strep, not in the throat but a yeast infection in his little tush. Nice huh? just the added fun we wanted. In turn, the stimming has been out of control and it could explain the bizarre behavior from the other day while getting a haircut. Insert deep breath here. It finally got so red we asked our DAN! doc where to go. He actually sent us to the pediatrician for a strep culture. All the waiting in the peds office was fun as it always is and all to get what we already confirmed, strep.


We also got the dreaded antibiotic prescription. The last time he got antibiotics was in 2004! Called the DAN! doc to run it by him first for approval. Instead of the Amoxycillin beast he wanted him on Omnicef and then we also got a gem called Bactroban for the affected area. Oh happy day! He thought that since he never takes antibiotics this should help right away. It's been 3 days and it's the same and the behavior as well.


Our kids are usually plagued by some form of yeast. The odd thing to me is that nothing in his diet has changed. It has been exactly the same. I already told them in school a thousand times to please watch him in case he is sneaking in someone else's food but I can't be sure since I am not there all the time. He takes probiotics and is on a GFCF diet. This makes me crazy. The hyper and extra stimmy behavior out of the blue, all of a sudden.


I mentioned to the DAN! doc if it could be P.A.N.D.A.S which I read about, he said we would be watching for it. Then he proceeded to lecture me on not making the next appt. with him on time because now it would be months before I got in. Are you really lecturing me? an adult? with all the shit I have going on? Seriously! I like this guy and all but maybe I am ready to part ways and meet someone else.


Anyway, back to yeast. Why now? What triggered it?It is very odd that he is not regressing in other areas, just in the hyperactivity and stimming behavior.


Just today the teacher reported an improvement in his handwriting skills. Nothing to brag about just yet except an improvement in his tracing skills. Sad when something so exciting for us seems overshadowed by hackling, eye flickering and ear covering.


It seems to me that it is just harder to rebound from frustrations than ever. With all that we are doing for intervention , he should be way more advanced than he is. Yet he is not. What is a person to do? What is the missing link? What are we missing?


I cried myself to sleep. Uncontrolable , quiet crying. We co-sleep so it was hard attempting to have a private moment of desperation and wanting to cry out yet having to be so quiet about it. I must have fallen asleep at some point.

Time for a haircut...

My son has really long hair.
(Disclaimer: not my son in the picture)
We did not plan it that way. We let it grow, waiting for all sides to become even when he was a toddler. One day, here he was! Long hair!

It's really cute and fits him perfectly. Most people always compliment him on it. Thing is, with such a haircut comes time to trim. Not only trim, but precise trimming. It has to be even all around.

His first official haircut came by the time he turned 2. It was a complete nightmare. We had gone to a kids' only salon, but my kid was the only one laying flat on the floor, red faced, snot-blowing, feet-banging and hands flying. I ended up having to sit down on the chair, squeeze him in between my thighs and hug him so tight that I left from there sore. No kidding...sore! But he needed a haircut. Nothing I could do about it at that point. It was a complete circus.

Several months later he had his occupational therapist work with him daily: combing his hair, using play scissors, mentioning the words cut, hair, etc.. It gradually got better and in the last 3 times or so, it has been doable. He still screams, but he can now sit on his own and I just have to hold his arms down softly and remind him "hands down." The only time I have to use force is around the forehead and ears, but not too much. 

Today, well, today was almost like that first haircut. Maybe he was too tired from school. Who knows? But today, today was no fun.

I found this really fun place with lots of TVs and endless DVDs! Such a fun place. Drove there after school and did our usual haircut routine; sit down in front of a TV playing a favorite Wovie. No problem so far. The chair even had a lap belt. Genius! He couldn't wiggle away! woohoo!

Then she started to untangle his hair. She did it way rougher than I do and kept spraying lots of water on him. I pleaded for her to please do it softer and not spray so much. Nothing. She clipped parts of his hair with hairclips....ayayayayyyy what? He has never had clips in his hair. He lost it. He freaked out! He started screaming at the top of his lungs, crying and fighting this woman. I finally took the clips ouf of his hair and asked her to do it like everyone else had before. Just go around trimming the darn hair!

But now, he was hysterical. My mom helped keep his hands down and I held his head in place for, you know, the "precise" cut. When we were almost done, I lost it crying as well. Odd. I usually cry at a lot of autism related things because I get frustrated and not usually at haircuts. But today, I cried.

When the stylist finished, I realized only 10 minutes had passed. 10 minutes! That's it! It felt like an hour. It really did. Wow. He instantly turned into his usual charming self and started dancing to the Wiggles which played on another TV. While he danced, I had listened to the stylist lecture me on "Don't say he doesn't understand. He does understand and you can't say that in front of him." Why do strangers think they can say such things without actually living through what I live through? She saw my son for 10 minutes and it gives her the right to "lecture" me? I would love to see her give him the haircut without my help. It just would not happen and you know what? Next time I might sit and say "go ahead, talk to him, he understands, right?"

TGIF!

I did not tell her off because the place is cute and we will probably go back. Also because sometimes you have to pick your battles. This happens so much to parents of ASD kids. You learn to just roll your eyes or ignore them or educate the nice ones and school the rest iykwim.


She redeemed herself by bringing my son a balloon which he loved and we were on our way.

$14.00 and a $5.00 tip.


Add it to my autism bill please.

NO MRI for us...

I had it all planned.
I let my son nap from 3 -7pm.
I stuffed him with food and water until midnight.
Sleepy time.

All in the hopes that he would:

Be full and not request food in the morning.
Sleep in so that we could dress him and take him straight to the car.

We would wake up as close to the appt. time as possible. He was not to eat past midnight which is why this was the plan for the 10:00am appt.

But life happened.

He peed on his bed at 6am, therefore waking him up.
"Pretzels!" he screamed half hour later.
That is his universal word for "Feed me something"

Sigh, what to do?
Called and cancelled the appt. and will wait to reschedule for an earlier time.
Didn't even think to do so the first time because I was sure I could manage the "plan" I had.

Had I not fed him in the AM, he would have cried and screamed to be fed. We would have had to hopelessly attempt to explain the why nots of the situation and surely he would not comprehend. In his mind, he would have thought something along the lines of "I don't get it. I am taught to request in this specific way and now that I do, I don't get anything in return!" Well, not quite, but you get the idea.


We did our morning routine and off he went to school as usual.

This afternoon I will be taking him for a haircut.
Can you imagine all the fun we are going to have?

Ah, the joys of family vacations...

Three hours to pack! I admit, I'm a girly girl and did pack a zillion things, but the three hours of packing was not my stuff...it was mostly my son's!

I requested a microwave and fridge for the room. In addition, I took the toaster oven to make sure all of my son's food was prepared and ready to go as needed. I took his morning cereal and bowl, soy milk, plastic cutlery, disposable plates, ziploc bags, aluminum foil for the toaster oven, endless bags of his GFCF pretzels, cookies, fruit compotes, tapioca bread, peanut butter, tater tots, chicken nuggets, waffles and vegan cheese. Also his lunch box, thermos, sippy cup and a 24 pack of purified bottled water. Most importantly, all his supplements had to go on the trip as well. One big cooler full of ice for all the cold items went on vacay as well. My son's diet is limited to these items as of right now. It's all he will eat and it's all GFCF No, we were not moving in, I swear!

We timed the drive there so that he would nap in the car. It was really only a 1.5 hour drive and he only napped for the last half hour. Luckily, the lack of sleep did not really hurt him later. He jumped on the bed the minute we walked into the room and had a blast doing so. We don't mind either. He gets such a huge smile on his face!

We had to take a tram to reach the beach. This meant WAITING in line. He was a little antsy, but the tram came fairly fast with no chance to really have a meltdown. We spent the afternoon on the beach watching the sunset. Beautiful.


He insisted in going into the water and did so up to his waist! Of course, once he was over it, he wanted "all done with pants" (even though he was wearing shorts) and we could not take it off because my hubby had taken his diaper off and forgotten to put something else on him. (Have I mentioned he is not yet potty trained? He won't go while wearing clothes, which is good and an improvement from before, but not potty trained yet.)



He stayed in his wet shorts and we waited for the tram to take us back. This time, it took a good 15 minutes which in autism world means 30 minutes or more. He kept pulling our hands and saying "bye bye." We did explain what was going on, but he didn't understand. Have you ever spoken English to someone who does not speak the language? Yeah, that's how it goes except he also cannot comprehend or reason. How is that for fun?

Once again, right before a meltdown happened, the tram magically appeared and all was back to normal. Phew, dodged that bullet. Back to the room for family dinner. Decided to order in and relax this night.

The next morning we also had breakfast in and then headed to the pool. My son, who we lovingly nickname Nemo because of his love of swimming, wasted no time and went right into the pool with my husband. The pool was still not getting sun and still quite cold, but he did not care. My husband had the good idea to take him on the hotel slide with him. That spooked him and now he did not want to come near us in fear we would attempt to take him on again. It was fun spending an hour trying to rebuild the trust that, hey, we just might not be after him for that. Spent most of the day switching on and off with my husband going into the pool with him. In the back of my head I kept fearing any additional stimming and behavior that all of the excessive pool chlorine would cause. But tried hard to have a relaxing time in spite of constant reminders that we are just not that "normal" of a family.

For instance, it was not fun when my son playfully splashed water at a girl twice his size and shoved a little boy. In his world, this was his way to interact with them. He did it all with a proud smile on his face. Not one mean bone in his body. We ran to the rescue, had him apologize to the kids and showed him (attempted to anyway) the proper way to interact with them. Luckily, the kids were sweet and patiently sat back as he did all these things. He would repeatedly attempt to get near the slide landing to feel the water as it rippled, which of course is dangerous. My husband had to keep swimming in to fish him away from there. This was over and over, all afternoon. There was a piña colada for my husband and I somewhere in there. We still attempted to get some sun and get into the tropical vibe. Called it a day late in the afternoon and headed back to the room for baths. I put my son down for his nap and my husband escaped for a massage while I showered.

Once my husband got back, I prepared dinner for my son in the room and then we headed out for our dinner. Found a really cool restaurant which is Italian and sushi bar all at once! Walked in and panicked when we realized there was live music. My son loves to hum and hold his ears when this is the case. We figured we would try it anyway.The host said our son was "the cutest thing she had ever seen." I think so ;) Of course it helped he was wearing his "Sorry girls, I only date models" tee. They walked us to a perfect table: by a window, away from the main dining room and near a wall with a plug on it. This way my son could look out the window, be as loud as he wanted without disrupting anyone and we could plug in his DVD player without the fear that the battery would die. Yeah us. As usual, we delayed bringing out the DVD player as an exercise of patience for him. He sat without holding his ears! This was great. He alternated between sitting and bopping his head to the music and looking out the window. He did good and perhaps the longest he has gone without flipping out. Once the food arrived, we finally took out the DVD player and it was heaven. He was able to focus by having the DVD player there with him. Sort of like his crutch. To our surprise, he kept dancing in his seat. He did it even to Brown Eyed Girl. Woohoo! Had an amazing dinner overall complete with wine, dessert and coffee! Left back to the hotel where my son ran around the lobby having a jolly ol' time.

The next day we did our morning routine. We packed and headed downstairs to catch the  tram to the beach. We got our chairs and hung out most of the day. It was a beautiful day. We alternated between being in the water and out. My son was too tired at times and would sit and lounge on the chairs just like us. We could not interest him in his bucket and pail but we kept trying repeatedly. It was a picture perfect day all around until it was time to leave. We walked to pick up the tram back to the hotel and there were about 20 people in front of us. As is customary with some autistic children, routine is huge. My son was now used to walking, picking up the tram right away and leaving. Not today. There was a long, 
hot wait. After he realized we were just standing there, he started to throw his head back in full screams, tears and even some kicking. I attempted to kneel down to eye level and explain in brief that the "choo choo" was coming and that we had to "wait." The more I attempted to explain, the louder he screamed, so we let him. We stood there poker faced while he went insane. I refused to walk away and show him that by doing that he got to step out of the line. Of course, I am sure everyone in line hated us. To our surprise, the family in front of us with two kids around the same age as our son used our situation to explain to their kids that this is how "they" look when they tantrum. LOL Made us feel like we had someone who understood. And their kids were typical! It was finally out turn. Like an automatic switch, the minute he saw the tram he smiled and was an instant angel. Phew! Got back to the room, where we did had his bath routine and then naps for all.

My turn for the massage this time. Very well timed I should add. I ran there, well not really but I wanted to. I walked to the spa and had a deep tissue massage and a pedicure. Heaven! I did not want to leave. They pretty much threw me out because it was closing time. So long peace! I felt rejuvenated and ready for the rest of our trip.I walked back in and my husband had fed our son dinner. Wow! This was great! We changed and headed out for us to have dinner. I wish we could do joint meals, but it's too hard with our son's diet. We found an Outback Steakhouse and had another nice experience. Other than him standing up in our booth a bunch of times, it was nice. I am thinking the key is to go to loud restaurants. Seems to work out good for us. It's so sad when the waitresses always offer us kiddie sippy cups, crayons and coloring pages. We always take them and attempt to use them with our son, but he doesn't care for it yet and certainly does not drink out of a straw.

We went back to the hotel after dinner and off to bed shortly after packing for the next day. At about 4am our son decided to get up and sing and dance. I guess he didn't get the vacation memo...sigh.....he was having the time of his life too! He finally nodded back to sleep again and woke up at 9ish. Yes! We managed to sleep some. Eventually we headed down to the pool again and had a small breakfast there. He was not as into the pool this time around so we decided to just leave back home. Once home, he picked up on his regular daily routine immediately.

I realize now that it was actually a good getaway. It's just hard to remember this while you are going through it. It's hard to let go and relax and I can only do so in hindsight, you know? I am learning to embrace the experiences rather than fear them. I do it all in the hopes that one day my son can enjoy them and tell me so. Wouldn't that be something?

Words are just words...or are they?

We have increased my son's Methylaid to one more 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." He still cries and blurts out "you're so happy." I's the cutest thing, yet sad at the same time. Sigh. But, hey, it's vocabulary!

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

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

Yesterday's comment by me "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. You also 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 doctor.

Ever since we did, my son has 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.

For example, he finds his CD with the song True Colors and plays it over and over and becomes seemingly sad. Out of the blue! Why is that? 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. 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.

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 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?

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 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.

A visit to the neuro...

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...