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 without the one below to trace off of!

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!

Parent Wars...

My son has autism. I will do everything in my power to help him learn and excel in every possible way that I can. I love him dearly, autism or not.

I do not understand why some parents feel that if you love and accept your child it means no intervention or that if you intervene you are not accepting your child. Huh?

Acceptance does not mean settling .

Acceptance to me means you accept what has been handed to you and continue on forward to help your child. There is nothing wrong with that.

I became enraged this morning when ,while visiting an online forum, there was a lot of Jenny McCarthy bashing going on. Who in their right mind would lash out at another mom who has lived through what we all live through and more and has stepped out to help us get the word out? She didn't have to do that. She could have stayed mum on the topic and simply enjoyed her almost recovered child!

Instead, she chose to write a book on the topic and take on mainstream mentality in an attempt to share what she learned while going through it. Because of it, some parents are targeting her because "they" say she posed in Playboy, is wealthy, has a potty mouth, is taking advantage of the opportunity and much much worse comments.

Wow!

I cannot believe it. I just cannot. Who cares!

For the longest time we have been fighting for research to be focused on the right thing that will help our children. We have wanted to keep bringing up vaccines so that more research can be done and a gentler schedule can be released. We have been wanting to inform parents that a Gluten Free Casein Free diet can perhaps help. These topics and many more is what Jenny is representing and yet there are parents out there so bitter and blinded that they cannot see past her beauty and bank account? wow

Why the parent wars?

Why not agree to disagree and stop the name calling?

Why not accept that any publicity is good publicity and that the more awareness the better?

Why not?

How can some parents not believe that children can recover?

Is it jealousy? I cannot believe that.

How can a parent not be happy another child has recovered?

Do I wish that was my child that recovered?

Yes

Do I dislike someone because they achieved it and not me?

Absolutely not

Can everyone please put your guns down and FOCUS on the goal here?

RECOVERY!

For that, I praise Jenny.

Autism Speaks? nope

Jenny Speaks

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 (n 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 since the Omnicef dose was so small, I would attempt a spoon 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 himsefl, myself and anything directly in front of him as well as the 2nd time when I so stubbornly attempted again. I had to literally pin him down, 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 was fighting me one second and the minute I stop, he went right back to what he was doing like nothing ever happened.


In fact, 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.

Thanks Jenny McCarthy!

Thanks for saying the taboo" V" word on tv!

You have made autism history!

Woohoo!

I just bought your book and will read it tonight!

I hope this book gives hope and inspiration to all parents out there (especially those who refuse to do something about their children's autism) and patience for those of us in the journey!

THANK YOU!

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. Just trimming the bangs and back and 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 reminding him "hands down". The only time I have to use force is around the forehead and ears but not too much. Just hold him still.


Today, well, today was almost like that 1st 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 tv's 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 fav movie. No problem so far. The chair even had a lap belt. Genius! he can't wiggle away! woohoo!

Then she starts 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! 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 would hold 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 were playing on another tv. While he danced , I had to listen 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?"

WOW! 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 that 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.

Let my son nap from 3 -7pm

Stuffed him with food and water until midnight

Sleepy time at midnight

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 awakening him.

"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 and we would have had to hopelessly attempted to explain the why nots of the situation which he would not care to comprehend. In his mind, he would have thought "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 hairtcut.

Can you imagine all the fun we are going to have?

Ah, the joys of family vacations...

3 hours to pack! Although I admit to being a girly girl and I did pack a zillion things for me, the 3 hours packing was not my stuff...it was mostly my son's!


Had already requested a microwave and fridge for the room. In addition, we took our toaster oven to make sure all of my son's food was prepared and ready to go when needed. 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, Gerber fruit compotes, his tapioca bread, peanut butter, tater tots, chicken nuggets, waffles and vegan gfcf cheese. Also his lunch box, thermos, sippy cup and a 24 pack of purified bottled water. Most importantly, his 15 supplements had to go on the trip as well. One big igloo full of ice for all the cold items went on vaca as well. Basically, 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 !


Had to take a tram to reach the beach. This means 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 which was really 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 is to the point where 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 of more. He would insist pulling our hands and saying "bye bye". We did explain what was going on , but you know how that goes. 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. That was a fun 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 hotel chlorine would cause but really, we were trying to have a laid back time in spite of constant reminders that we are just not that "normal" of a family.


For instance, it was not fun when my song 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 in there 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 in 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 tolerance 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 famous 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 uselessly 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 2 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, bath routine and 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! 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 just so hard with our son's diet. We found an Outback 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.


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. Baths for all lunch and back home where he picked up on his regular daily routine.

I realize now that it was actually a good getaway. It's just hard to remember this while you are going through it. 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?