Thats me....Thats us

That's me, standing partially on a soccer field biting my nails.  I never bring a chair, I have never been able to sit down.  That's me, holding my head in my hands, then moments later holding my crying sons head in them also.

He wanted to play a sport and soccer is what he chose.  Coming out of an amazing year in Kindergarten and a relatively calm summer, I chose to put him in an intermurals team that was for typical children.  I may have made a mistake.....no, I made a mistake.

That's me running between two fields, one with my four year old daughter and the other with my son. That's me missing my daughters first goals because I have to wonder if my son will hit yours.  This is me looking like a basket case on the sidelines crying, crying because my son can't process and handle his emotions when your son says he's stupid.

There are days I wish I could hang a sign around my neck, or our necks that say "my son has Autism....yes i know he doesn't look it"  (whatever the F that means) .  I use to think the sticker on my car was obvious enough but, its not.  You see my son, he looks like your son...except mine is talking obsessively about numbers.  My son is socially awkward and anxious and your son picks that up.

That's me pacing up and down the sidelines, I see whats going to happen before it does.  That's me yelling "Frankie!" .  I'm sure half the parents think I'm some psycho helicopter parent, I don't want to be.  I want your kid to stay safe, my sons new response to your child's unkind words it to kick him.

Your kid kicked my kid....because my son is "weird".  You respond, "just stay away from him, stay away from that kid".  That's me wiping away my tears.  As much as bullying words hurt, parents telling their children to stay away from my son, that hurts just as much.  That's me dragging my sobbing son off a soccer field for running full force into another child....for no real reason.  Maybe you think I'm overly strict, maybe you think I'm being too hard on him.  That's me dragging him off early because i can't stand to cry in front of you all.

That's my son.....walking to apologize to your son....who ignores him because he was instructed to stay away from that kid.  Mine stands there defeated and yells, "I tried, they walked away"

That's us....walking off the field, defeated.  I waited to cry till I thought my son couldn't see me.  He saw me, he began to sob himself.  He made promises I know he can't keep, we have one more day of soccer, he made me promises.

The next time you see people like me, a family like us.....give them the benefit of the doubt.  Don't assume that child is bad, don't assume that mother is incompetent, teachyour children to be kind.

One....More.....Practice......God, let him get through that last practice, I'm going to have a positive attitude, because that's just me.

We had a good run!

So I had been M.I.A. for a while because things were splendid.  Not perfect, plenty of typical 3 year old annoying behavior, but nothing exciting.  Maybe I should have written about how typical he was being.   I found out a few weeks ago that my son was playing me for a fool.  Apparently he talks, pees, poops, eats a variety of food and drinks out of a cup at school.  All things he does NOT do at home with out an enormous amount of prompting.  Doctor says besides the speech, to see him  now, you would think he wasn't on the spectrum's. Most stims are gone, he just is.

Until he saw me today when I went to his class party.  The teachers told me he never acts like he did....I hadn't seen him act like this since he got diagnosed!  He was SCREAMING at the sight of me, attached to me screaming, refusing food, freaking over everything, anything.  Once we left school he was ok again.  I was angry at him, I don't understand why my mere presence can set him off into such a tail spin.  Why is it that my son is sticking out even in a special education pre-school class.  Maybe that's mean but, I felt so upset.  They tell me all the sweet things he does and how great he is, but when i walk into the room he turns into a mess that I cant fix.



To end the evening we went and got a haircut.  My mother in law wanted to bring him, last time she went with out me and she said it went poorly.  He has always been ok getting a haircut with me alone, but i think the distraction of a favorite grandma kind of gets him all wired up and more freaked out.  His hair got messed up from moving and i had to hold his head against me just to finish it up.  I don't know what happened....3 months ago he got a haircut, no problem.  I feel like crap......I should do dishes, I don't want to....boooo

I can make you Aware but....

......I cant change make you accept.

I just got done reading a wonderful blog post over at AutismWars which compelled me to write today.  Kids have been sick for about 2 weeks now, its like they ping pong back and forth and my brain is just all over the place.  So when Jenny's blog post from last April gave me inspiration I had to jump on it.

Earlier this week I had to deal with  disgruntled reader who a.) does not believe Autism is a disease because there is no Scientific Evidence Supporting it.  b.) Says we should all think outside of the box and that our kids are NOT sick, society has programmed us to believe that.  c.)  wants me to educate them. So like I said, I can make people aware but I cant make you accept.

This reader is AWARE of Autism, they just don't feel like Buying it..... THAT'S the problem.  People see our bumper stickers, they see the puzzle pieces, they are completely aware of Autism, but will they choose to accept it?

I too was Aware but had no idea until it was on my front door.  I too was one of those waitresses who could not understand why people could not handle their kids.  I too believed vaccine injury was crap.  I too thought Jenny McCarthy was insane.  I too boldly believed nothing like that could ever happen to my child.

Funny that I denied it would ever be me, yet another part of me was convinced it would be.  When I was younger I saw a commercial of a Mom putting a child into a car seat as he looked off into the distance.  As she walk away it said 1 in 150 children will be diagnosed with Autism....and as it said that I kid you not I thought to myself  "That's going to be me".   My question is, What in Gods name did that commercial do other then scare the shit out of me.  NOTHING, it didn't give you one single idea of what the hell Autism was about.

Like Jenny said in her Autism Wars Blog post, we are all preaching to the choir.  We all KNOW, we talk to each other about Making people aware but it needs to go further then that.  There is one image of Autism out there, Rainman type or Non -Verbal.  I never see extremely attractive and charming  3 year old that constantly runs away laughing as i try to grab him by the neck before he runs in the street.

The people that see me with the child described like to believe my child is bad and I am also a bad mother.  I lived a year of my life convinced my child was a horrible child who defied me because he hated me.  I did everything, I brought him to social groups, mommy and me, doctors, punished him in all forms, crap I even went back to work and put him in daycare because someone could do better.  It turns out I wasn't a horrible mother and my kid wasn't bad he just had NO idea what I was saying.  At 30 months old my son had the receptive language of a NINE month old....WTF?  That's Autism????  Lining up the trains obsessively and freaking out when they fall over...that's Autism? Stacking cans is Autism?  Jumping for hours is Autism?  Shaking your head uncontrollably is Autism?  Not talking.....wait the Dr said boys talk later then girls......oh shes an idiot so that's Autism too?

That's the issue, the public is made aware of classic Autism.  A kid that won't look at you, Won't let you talk to them, or touch them.  A kid who sits in the corner rocking.  They never tell you about the kid who cant handle loud noise, the kid who cant handle how sand feels on their feet, the kid who lays on top of you constantly to get sensory input, the kid who cant physically sit through dinner at a restaurant.....i could go on forever.

Someone needs to make the public accept our kids.  They are Aware, they need to Accept damn it.

I'll take Overwhelmed for $1,000 Alex

"This woman Hasn't finished school paperwork,  has Early intervention ending in two days, has a daughter with 102 fever for 2 days,  Drove 45 minutes each way 2x last week to go to a Neurologist and is completely overwhelmed "......."WHO IS The Neurotypical Mom"!

I've been meaning to write and then something comes up.  I have a huge issue with being easily overwhelmed.  When too many things are on my plate, I literally freeze up and do nothing.  I need to bring in the paperwork for Frankie's school tomorrow, but being in the process of changing doctors has left me confused on who to get to fill out the physical form.  New Dr wont see him till the 12th, I cant find the stupid transportation paper work....I have a headache.   Speaking of headaches, I have had one for 3 days.  I thought maybe it was the hurricane, all the pressure in the air, all the news media making me INSANE.  They freaked us out, our grocery store shelves were empty, we all freaked.  Now granted the ocean broke the boardwalk and there are people who are still out of power and will not get it back till Friday the earliest......no one died and our homes are still here.

Lia had a fever all day yesterday, which spiked to 102.5 around 6pm.  Ran to Dr today who said it wasn't ears or strep but her throat is red......awesome.....so it continues to hover around 102 every time the Motrin wears off.  If in 2 days its still here I have to go back.

EEG went well, separate blog on that, I promise.  My baby starts school in a week and a day.  I'm trying to hold back tears.  This is not fair, I am not ready, I think I might have to be sad for a little.  My emotions are all over the place :(

The Neurologist Take 1

So I have finally gotten around to describing our trip to the Neurologist.  We chose a doctor about 45 minutes from our house by Stony Brook University Hospital, Dr. Gail Schuman.  If anyone on the island needs a pediatric Neurologist, she was great, so down to earth and understanding. 

When we got there I had some issues with referrals....apparently I needed one, as you guessed I didn't have one!  At least we got a faxed over referral from our pediatrician but that was a little stressful to say the least.  We had a pretty short wait and were brought back to the room to meet Dr. Gail.  Mostly she questioned us and watched him play.  He does have a diagnosis but I wanted a medical one also.  She said he had some great skills but wrote up that she also thought he needed ABA.  It seems the school district has decided by watching my son for a whole 30 minutes that they can decide that he does not need any behavioral therapy.  Hopefully Dr recommendation over takes the school districts decision, I will find out on the 16th :/.  So they checked LP's reflex's (great!) and some other little things.

We then got all of the recommended things we have to do.  I have to bring him back for an EEG on Aug 26th, have his blood worked up to check for chromosome issues and lastly get an MRI.  I am very anxious about all of these things but i know they should be done.  Even Dr. Gail asked me why they never did blood work ups on him at the pediatricians to which I had no response.  What got me thinking even more to the lack of knowledge on the pediatricians part is that they KNEW my son had soft markers for chromosomal abnormalities when i was pregnant.  This bothered the Neurologist.....

At my second trimester scan my son has calcium deposits in his heart and a cyst in his brain.....things they told me were soft markers for chromosomal abnormalities.  I refused an Amnio since my AFI work came back that i only had a 1 in 14,000 chance of having a child with issues.  He was born "fine" and no one ever looked into anything.  They said he was fine and those things probably disappeared.  So this is a main reason the Neurologist wanted the blood work up and to get a baseline MRI to see what it was like in there since we have no idea when and if that cyst went away.  So that's our first trip....with more to come.  Wish us luck on this journey!

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.
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