A 2 week Headache

I have had a pain in my head for two weeks. 

Ive been told to go to the doctor by people....but I know its stress....or a pinched nerve.

People say that blogging should be easier when things are crappy.....for me it isn't.  I have a million things running through my head and putting them down into words is more stressful then anything. 

My son started an Autism Program in Septemeber.  Last year he was in a self contained classroom and never had any violent behaviors....never.  Now he kicks, spits, bites, hits....all learned behaviors from his classroom friends. 

Yesterday I was called and told he was restrained for 15 minutes by 2 women because he was "having an intense outburts"  when i asked if I could come down they said it wasn't necessary since it was the end of the day.  I was then asked to sign a paper saying restraining could be added to his Behavior plan.

I got the speech that all schools restrain.  I was told that his behaviors starting when he got into a new program were a coincidence.  I was told emergency placement would be difficult.  I was told I didnt have to sign. 

I don't feel right.  If they did this to a typical kid people would go crazy.....but because he has Autism.....its just part of the plan....

A why me kinda day

Yes, I am having a why me kind of day.  Look at that kid, he is so cute, I shouldn't feel like this.  I woke up to a ticket on my car.  It the end of the month, I guess the Nassau County PD decided to drive around blocks at 1:45 am looking at inspections.  I was waiting till Monday to get the inspection because of the check engine light and having to clear that and drive it for 60 miles first.  I suppose the officer wouldn't care if I had left a note about my situation.......grrr.  Such a waste of a day, wont have the car back till Monday....husband is working till Monday......but then has to go to Westchester to deal with an issue with a prior employer.

My son came home with a note saying he was have outbursts and trying to flip chairs, and refused to eat lunch.  I knew that he would regress, he was going from 15 hours 1 on 1 to 30 hours in big groups.  I was foolish to think it wouldn't happen and that Frankie would keep excelling at the speed he was going.   So sure he would talk more.   Here I am 3 weeks into school and my son has become Echolailic again....F$*K......I'm suppose to say How are you  and he is suppose to say "I'm good" like he always has but no....he looks at me and says "how are you?" S&%T, S&%T, S&%T.........I miss him.  I feel like he gets home and I spend 3 hours with him, most of which is eating dinner and getting ready for bed. 

I would like to be more emotionally OK here at the Neurotypical Mom but things are just bad.  I have to tell myself though, its OK.  Maybe its good for me to be so raw on here, to tell you guess what, this sucks.  Autism sucks....and it stole my kid.  Even if I recover him, I'm not going to get it back.  I'm watching my daughter do things Frankie still hasn't done.....I didn't think that was possible, I know what she wants, i can read her cues, I don't feel helpless as she cries because i don't know whats wrong. 

I know things can get worse.  I will not tempt God by saying it cant get worse. 

My Personal Mental Anguish

I first apologize for my down posts and demeanor lately. Mostly it's because I began this blog at a turning point in our lives as a form or therapy and help via the ASD community. I love to share my sons progress, but I also feel it is important to display the negative aspect to show others that they are not alone. When we began this journey, I was very alone.....it was not till I started this blog that I found others like myself......i thank you all for that!

That being said, I have been in a ton of emotional pain lately. Between school starting, losing our therapists and general anxiety, I'm a mess. I don't know 100% what happened to my son. I know something happened with vaccines. I do think he was predisposed, I know his cousin has it and I remember thinking I wouldn't vaccinate. The other day I found the vaccine book on my shelf, barely touched that I purchased while pregnant with LP. I never finished it because I thought I was crazy, I thought how could I not trust the medical community. I remember thinking the dr was so sweet as she looked me in the eye and told me they were the same shots she would inject into her grand children. So now, I feel enormous amounts of guilt. I had the resources to say no but I listened to everyone else anyway. My husband has complained to me on numerous occasions that I care too much about other people and should just listen to myself. It's the story of my life, didn't go to Scranton bc my ex was there.... ndidnt want anyone to think I followed him. If I went there I would have probably finish my damn nursing degree. Don't go awaY to school at 21, that's weird and your old. Don't go to cosmetology school you need a real degree. You should vaccinate your kid trust me. Arrrggggggg! I suppose in the overall picture of life I am happy, and without those mistakes I wouldn't be here so they were worth it.

Our jobs as the parents of ASD children is now to spread knowledge and to not be quiet about it. When one of my sibling or inlaws get pregnant I will be that nut that tells them to not vaccinate, to get the immune system work up, to get the chromosome tests, I don't want them to ever feel like this. I feel like I let my son play in traffic, and it was my job to protect him. There are nights I just lay in bed with him and pray and tell him I'm sorry if this was my fault.

No one should have to feel like this, I swear, if it comes out the government knew the whole time......I'll lose it.

Behavioral Regression Anyone?

Today was a mixed day. I will start with the good! LP has become less echolalic I have noticed. For a very long time he didn't answer, he just copied what you said. My dad stopped by and was drawing pictures for LP. Grandpa was making elephant noises and LP said " your funny Grandpa Joe!". Sooooo Appropriate!!! He has been saying funny things lately, like on Monday his teacher wore her hair curly like my sister in law does.....LP pointed at her and said " You look like Aunt Lisa!!". We are working on tons of emotions, but he still thinks it's funny when mama is mad. I try to make a mad face when I'm super pissed......he just laughs.

Now the bad.....ok not bad just inconvenient.

We went school shopping at Kohls......and like a typical 3 year old, my son learned to hide in clothes racks. The issue is my son does not understand to come back, nor does he care when you do that whole " I'm leaving you here, bye". He just screams back " bye mama". Out of the stroller he was running away, in the stroller he was hurting his sister. He just laughs when she cries, he hits her in the head, pulls on her legs....it's endless. I managed with many looks and nervous smiles, at one point I even blurted out he is autistic to a stranger because I wanted her to feel bad for me. That's so lame, but we were on line and again he was kicking his sister, the lady didn't even say anything, but I had to say something. Next stop.....supermarket. He has been doing so much better, but not today. I asked him if he wanted to push the cart or sit."..he picked push, fantastic. We go to produce and pick out what we need.....and again he flips out in the freezer section. He had a sweater, he wasn't cold!!! He runs away, he ran away again in the store, if I put him in the cart he tries to jump out, he ran head first into a ladies cart.....craaaappp. People say to leave him home, but I want to expose him to as much normal things as possible, but I find myself getting aggravated. I have been a hermit for months, and I'm trying to be brave and venture out and do typical things, but its so much work.

The hardest thing is the nervous looks. Today I felt the women were better, some older men looked annoyed. I younger guy laughed and told LP he was awesome as he dumped a bag of grapes all over the dairy aisle.....I ran ay from that spill haha. I was in a mode that I wanted someone to say something so I could yell at them. His active level is off the charts and I just have no idea how to lower it.

He really is the sweetest boy, I feel horible when I am so frustrated. My mother in law once wished upon my husband that our child would be like him if not worse as a child......her wish came true. We are in such a regressive behavioral rut that it's painful.....he now can talk, but he won't listen.

The Story of Diagnosis (part 2)

I feel like I have to get all the pain and backstory out before I can move on to blog about more wonderful things going on in our lives. Wonderful things are going on with LP!! He is so funny, I ask him how old he is going to be and he actually says three! Also, today, July 4th, my son watched fireworks for 10 while minutes.....then with hands over ears he said "good bye" ( his way of saying he's done with what he is doing). Fireworks = great success!

So today I posted a video about Autism in the U.S. It was mostly about the vaccines. I personally believe that there is a genetic trate that is passed down (everyone has a quirky uncle right) but I honestly believe that vaccines hurt babies. A family member, whose child also has ASD, tells me constantly to get off the vaccine band wagon......but I can't. And now I will explain why.....

At 26 weeks pregnant I received 2 steroid shots, 24 hours apart, in my butt that burned like hell. At the time I was being cared for at a hospital that was being sued for accidentally causing the deaths of 6 people. I had no insurance and this was my only option. At 20 weeks I was told my cervix was short and that I would need weekly monitoring (I find out later from my current ob that my cervix was in normal range and that the hospital most likely did it to cover their butts and milk new York state for Medicaid money). So every week I was monitored and at 26 weeks was told that as a precaution, I should receive these two steroid shots to mature my sons lungs just incase Like a good little girl I did what I was told....I got my shots.

On July 6th 2008 I birthed a baby boy who came right on time, only one day early. He was perfect to me in every way. I said the minute he was born he was clingy, he never wanted to be put down. He also was a horrible breastfeeder. I would feed him 12 times a day practically, he struggled so much to get a good amount in. I never gave up though and BF till he was 11months old.


LP was a little funny. He was on the later end of hitting milestones, but he smiled, he cooed and eventually he did things like lift his head. At about 8.5 months old my son had a well visit and was set to receive the first half of a flu vaccine. Stupid me didn't think twice, even though I personally would never get one myself. The night after he received the vaccine my son shot up in bed ( he had been sleeping between my husband and I ) and started swaying back and forth like he was drunk. He was burning up with a 103.3 temperature. I freaked and called the dr who told me it was normal and to give him motrin, I did and it went down, but it was uncomfortable enough that I never went back for the second half of that shot.

A week passed and my son had a fever again. Along with this fever he had a cough and was struggling to breath, he would stop breathing while he slept, so to the hospital we went. He ended up on nebulizer treatments every 3 hours around the clock. There was limit space at the hospital so I was sent home with instructions to go to the dr every morning at 8am to monitor his oxygen. Eventually he got better, but he became a very lazy mushy baby. I remember we went to birthday party and he cried the whole time, he wouldn't go near kids, or play with toys, he screamed and screamed and I knew something was wrong. He stopped responding to his name, he stopped exploring.....he stopped Making attempts to walk.

Two more weeks passed and my son started vommiting. He threw up at least 7 times a week for 3 weeks......and the doctors told me it was normal because they couldn't figure out why. Then the ear infections started, double ear infections at least once or twice a month. Lastly the bleeding diaper rashes. They told me it was yeast, they told me it had to be from breastfeeding, that it had to be thrush. The problem was I never had thrush, and he never had it in his mouth. Yet, he would have chronic soft stool laced with yeast that gave my son open sores on his butt. It got so bad that I stopped breastfeeding thinking it was me.....but it wasn't.

This whole time my husband and I started thinking he was depressed. My son never look happy. I thought I was a horrible mother because no matter what I did he wasn't happy. He didn't play with toys and all he wanted was to be held. He stopped developing at a normal pace. We thought that his development had slowed because of the chronic ear infections, that he must not have been feeling up to walking or talking. He did start pointing, and started saying car and ball. Then at 15 months he got his shots (excluding MMR) and my son froze.

Everything froze in time, the words went away the screaming and the behaviors began and so did the eczema. We thought he was deaf, but he wasn't. I thought putting him in daycare he would be more social, he wasnt. He fell all the time, he screamed all the time, he had no words, he didn't even say mama. Again I was told it was normal and I was crazy to think Autism.....and I believed them.

In 2010 my son didn't get a single vaccine.....and in 2010 my son did not get one ear infection and the eczema went away. As the year progressed, my sons behaviors got more odd and violent. Spinning, jumping, running, acting deaf, lining up trains, stiming on the dresser, no speech, violent tantrums......once again told it was normal. At 30 months my son was diagnosed with ASD and I finally knew I was right the whole time.....and I can only think that these vaccines had something to do with it.

Starting from those steroid shots at 26 weeks, that are ment to only be given to women that are showing actualy signs of labor, not just incase. The insert I found out later has a huge warning to not be usesd on infants of children due to risk of neurological damage or death.....yet it was injected into me!!!! The flu shot was the second big one, defiantly containing thermerisol and lastly the vaccines he got at 15 months old. I honestly believe that little by little these vaccines hurt my son and only until I stopped giving them to him did he at least regain his health.

I can't change the past, I can only learn from it and spread the word. My main priority is helping my son recover as much as he can. Thank you for letting me share my story.....I've never written it all out, it needed to be done.
x