Do I live on earth with everyone else?

Why is it that I feel like I'm the only one one the planner that has to deal with what I deal with on a daily basis? I'm not one to complain but I just feel like a prisoner and when I don't feel like a prisoner I feel like all I do is fight with everyone about what my sons need.

I am so tired. I know our lives will never be "normal" again but can I just get it under control? I feel like nothing is under control. I have headaches every day from the stress.

I know I can't be the only person. I see other special needs parents out in public and everything looks so normal. They go to restaurants and the library and movies. Why can't we do that?

Getting very annoyed

Today has been an exhausting day. Why do I feel like no one can figure out what's wrong with Tito? I feel like they don't know so they ate just passing him from one specialist to another. Why does my sons vomit 6-7 times a day? We have done an upper go and a video swallow and now been to the allergist. How ma ny more people do we have to go see and to hear ummmm you need to see GI? Well no dip!!!! His GI doctor is the one sending us to all you morons. I'm very upset at this point and annoyed. Now they wanna do a scope so they can come back and say hmmmm that yeilded nothing. Then the GI doctor says he may have some syndrome but Don't tell me which one so I can research it. Ughhhhh! What the hell is wrong with my baby? Just tell me already!?!

My wondering thoughts!

Today has just been crazy. I have tried to keep busy and nor let my thoughts run away with my but I cant help it. Tito has an appointment Monday with the allergists and I know by reading the papers it can't possible be a nice test. I can't stand to watch that scared look on his face when he doesn't understand whats going on. Then it makes me sad that he thinks I am letting them hurt him.

As if that's not bad enough I still have 7-10 business days to go before I will know whats going on with Pedro's EEG test. I am scared out of my mind. He has a lump on the back of his head that his father and I keep watching get bigger and bigger. He has had it since birth but all of the sudden the last few months it just gets bigger. He's always complaining of headaches and leg pain. Now that I am waiting on a neurologist to call me I can't stop thinking about it.

I really think my brain is spinning out of control and that maybe I need to see a doctor for myself. But then that means I'm not strong and I have to admit defeat. And I will not do it. I can't I have to be strong for my kids. We will survive and everything will be OK. It has to be

Matteos world living with Autism: Fundraising!

Matteos world living with Autism: Fundraising!: Dear Friends and Family, Our son Matteo Chavez has autism, a disorder involving a spectrum of symptoms causing impaired and delayed learnin...

Calm my mind

It's been a long time since I have posted but I have had alot going on in my life lately. I thought once my angels testing was over that our lives would continue on as planned. Boy was I ever wrong about that. Now adays it just seems as if its one thing after another. It seems as every time one of my boys has a doctors appointment or test they need something else done and there is something else I have to worry about. Baby Jorge (tito) has an appointment coming up at the allergy clinic and then back to the GI doctor. I am not too happy about the GI appointment because we are now waiting to hear if my baby has some kind of syndrome. Dr. Gisser wouldn't tell me what kind of syndrome because he knows I would research it before the next appointment. So now I am just waiting and hoping its not something bad. They are also talking about the fact that he drags his right let that he may need to see a neurologist. WTH?!? Anything else?

Now am am worried to death because they think my other son Pedro is having seizures and he recently had psych testing done that revealed he has Disruptive Behavior Disorder and PICA. He also went this morning for the EEG and the Dr. that performed the test said there are some things on  there to be concerned about and that in 5-7 days a neurologist will be calling me to set up an appointment. I am scared out of my mind at this point. Please God don't let anything be wrong with my other baby! I don't know how much more I can take. I'm freaking out because Pedro has a lump on the back of his head that keeps getting bigger and he is always complaining of headaches. I just don't know anymore.

It seems as if my life is now being consumed with worry and anxiousness. I can't even sleep anymore even when I have the opportunity to do so. I walk around in a fog feeling sick to my stomach wondering whats going to happen when my phone rings. I just don't know anymore. I really need to get it together for my kids but sometimes I'm just scared and can't get past it.  

Just One of those Dayz

So we started Pedro on melatonin last week and it seems to be working so he is out like a light, but Tito is still going strong even though he's sick. Because of his sensory issues I can't figure out how to give him the melatonin without making him throw up and losing all of his other meds he takes.

OK so today has been one of those days. Both boys and myself are sick and its not pretty. But a few good things have happened today one is Tito wanted to take a bath and so I went into the bathroom to start the water and his sister was taking him to get his clothes and he ran back and opened the door and said" mommy don't shush the do!!!" I cant believe it that was a sentence and no one prompted him or told him what to say. Second, he was watching wonder pets and we were laughing because he stands right in front of the t.v. and it looks like the little duck Mimi is talking right to Tito and we hear him say in a little tiny voice "wringing" while the song was on and Mimi was singing at that exact time "the phone is ringing" hahahahaha! It's the little things.

Blessed Thank you God!

Today is one of those days that I am thinking how blessed we are. Tito has been talking up a storm all day. I was thinking about six months ago we couldn't understand one word out of his mouth but thanks to 6 months of speech therapy and his IPAD 2 that he got from Cookies for IPADS we can understand about 40% of what he says.

He also is loving preschool and that is huge for him. He plays alone still and has his moments when he doesn't want anyone messing with him but he will actually come up and say"Mommy ah kool".

I'm not gonna lie it's those moments that make it worth while. It's those moments that let me know it's going to be OK. I live for the little things now and thanks to my hero Tito I am more understanding and accepting and open minded and I love him for that.

I know theres no cure for Autism (so I was told ) but it's the little moments that make it so easy for a split second to forget  that he has autism. It's when he's looking at me cause he thinks I'm not paying attention and I can see him looking at me with those big beautiful blue eyes and his long eye lashes flickering and he says "lubbies mommy".

Autism will never win!!! My Tito won't let it and because of him I will never give up! Thank you my beautiful angel for all you have given to mommy for you will never know the impact you truly have on her:-)

Finally some Results

I finally got to the report appointment. Why is it everytime the doctor says the word autism the rest of the rest of the meeting is fuzzy? It's like I'm listening and ready to hear the results but as soon as the word AUTISM comes out of her mouth its all down hill after that. I felt like I was sitting in a bubble and my mouth was sewn shut and I am screaming to the top of my lungs"shut up lalalalalalalala" It's the craziest feeling.

Any how his final diagnoses is Autism PDD-NOS, Global Developmental Delay,dyspraxia, sensory processing disorder, and mixed language delay. Well, I think thats enough now don't you. 

I'm glad that parts over now for the best part about having to listen to all of that, IT'S TIME FOR THE BUTT WHOOPEN! The big girl undies are back on and I am ready to kick Autism toosh.

I am so happy that I am the proactive mother that I am and have already made a twitter account and facebook to spread awareness and advocate for my angel. Also along the way I have enjoyed blogs and facebook pages from some great people like Gaven's Gang (For Autism Awareness), Autism Warrior Long Island,NY,Cookies for Ipads giving children with autism a voice, More Than Autism,Grape Jelly on Pizza, Homestyle Mama(with a side of autism), 

Autism Daddy and Matteo's world.

I have been reading tons of books and I have a great team that my angel and I work with every day. 

My philosophy is My son has Autism. Autism does not have my son!!! I heard that from a dear friend.

The Biggest Advocate

I should have known my life would have been anything but normal from the chaotic pregnancy that I had. Not only was I pregnant with twins but twin boys at that. The entire pregnancy was totally not what I expected. And I was sure when I went into labor at 26 weeks that my whole world was about to be flipped upside down. I was so scared I couldnt move. At that point I wasnt sure what was going to happen to my little Angels. All i could do was pray. When they were born two weeks later I was thrilled but again mortified because how could they live being so small. They were in the NICU for twelve weeks with breathing issues, NEC, GERD, Pedro needed two blood transfusions and a double hernia repair. They both came home with apnia monitors and it seemed we were leaving all that stuff behind us as they got bigger. At one year old they even got rid of the monitors. Pedro seemed to be the smartest baby in the world while Tito seemed to be the perfect quiet cuddly little baby. Tito babbled and cooed and crawled and walked about three weeks after Pedro. It seemed for the first year Tito was only a little behind Pedro and he was catching up till one day I noticed that he really didn't seem to be doing all the things he did before and just seemed to lag farther and farther behind his brother. I had family and friends telling me that he was just lazy or he was a mommas boy or my favorite is that he's just being a typical boy. My gut finally took over and said hey woman somethings not right have him looked at. And so it began. Testing and testing and more testing. Meanwhile I am having a heart attack because I still hadn't heard a word out of his mouth and then I noticed that every time he did try to say something to anyone the other party would look at me and say "what did he say" And I would just stand there and think why don't you understand my baby? So after all the testing 2 years later on December 19,2011 I heard something that no mother wants to hear "Yes Tito is on the spectrum mam, come back in a month so we can go over the testing results" And so here I am. But I will say this my angel still has that sparkle in his eyes and I know that without him I wouldn't be who I am, HIS BIGGEST ADVOCATE!!!