A Happy Feel Good Post

Just Kidding!

Well, only kidding a little bit.  I recently read a Blog by Autism Daddy called "Pulling Back The Curtain On Autism... no miracles here..."  

It made me remember one of the reasons I stopped blogging for a while and kind of disappeared.  I have one of those kids.  I have one of those kids that has come so amazingly far and one day people will probably look at him and just think he is quirky.  I felt weird because he was doing so well.

Sometimes I feel on the outskirts of the Autism community now because my sons biggest issues are mainly behavioral.  He won't eat, he won't use the potty and he has the worst temper.  In two years I went form having a stimmy Non-verbal kid who on occasion had banged his head on concrete to a Moody Teenager in a 4 year olds body.

They tell me he still has issues processing thing, transitions are still tough, he can't pay attention and he gets overly emotional when his friends don't agree to play with him.  Again, to me, his issues aren't that huge anymore and it makes me feel funny.

So my thing is, I know there is a deeper, darker side to Autism,  I think that side is played down.  So here I am bitching because my son won't eat his food and being happy that he wants to do 1st grade level workbooks and I feel like I add to the problem.

Just because my kid is Sheldon (BBT) doesn't mean all Autistic kids are.  To my fellow parents who have children more severe, know that I think of you constantly when I write.  We are on the Same journey but it is Very, very different.  Because seriously, no matter how smart my kid or your  may be, I get so annoyed when I hear "You know they say those kids with the Autism are Super genius".....ugh, If we are doing that, then Asian and Indian kids are also super smart and I am dumb as a bag of rocks because I'm Polish :)

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.

Aren't We On the Same Team?

I will State this again.....WE ARE ON THE SAME TEAM.

"Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishment toward organizational objectives. It is the fuel that allows common people to attain uncommon results."- Andrew Carnegie

Our objective is to Spread Autism Awareness,  to Open the eyes of people that this is an Epidemic and To SUPPORT each other regardless of each persons personal beliefs.

I have said it before, I started this Blog for me, I was having a selfish time and needed it.  As time has gone by, I have come to realize it is more then just me here, its us, its WE!   As with any large group of people, there are many different personalities, opinions, view points and attitudes. My ideal perfect Autism World we could all be one unit, a unit that can spread Awareness and get the services we need, heal our kids (partially or fully), find out what is happening and see if we can stop it. 

There are many school of thought, It's the vaccines, its genetic, its environmental, its better diagnosis, lets "cure" it, lets recover them, we should leave them the way they are, try Biomedical, ABA is the only way, ABA is robotic, Naturalistic play is best, it goes on and on.  Apparently there is also a rift in how parents should cope with Autism, Laugh, Cry, complain constantly, be depressed, be fake, Be real, be honest, cover it up.

As Voltaire said     "I may not agree with what you have to say, but I'll defend to the death your right to say it."

Everyone is entitled to believe what they want to believe and handle it in the way they see fit.   No one is better then anyone else for what they believe or how they cope with Autism.  No one is the Autism Authority here, not me, not you , not the guy across the street, no one.  


I challenge you to say enough, enough with the back and forth, enough with the bickering, enough with the passive aggressive behavior towards one another because guess what We Need To Work TOGETHER.  What works for your kid may not work for another kid, but that is not the issue at hand.  

The issue is getting our children more services, to get Doctors to open their eyes and work with us to help our kids and Stop telling us its all psychological, to get people to realize our kids are not misbehaving but have a disorder, to get insurance companies to pay for therapy and medical interventions for our kids, to raise money for families who are struggling and going bankrupt because of Autism.....there a a million more Common issues we have that we must join together and fight for.  


SO enough with the debating on whether or not vaccines caused Autism or if a parents Laughing about Autism is counterproductive for a parent. I hope we can work as a group, from one end of the spectrum to the other and everyone in between.  Our kids deserve it and so do we. 

My sons Autism is Beautiful

This is short, its my feelings and its going to be raw.  I let LP walk in the supermarket today.  I let him have the big brother job of helping mommy push the cart.  I knew today I needed to put on my big girl pants and walk with my son instead of tying him to a stroller or shopping cart.  I knew he needed to learn and I knew I needed to put my anxiety away, put my best foot forward and let it happen.  He helped me push and he put things in the cart.  He had his vocal stim moments and most people looked away or smiled and nodded.  I didn't really give a crap what they thought honestly.......

Now I lay here 5 hours later with hurt on my heart and holding back tears because of one woman in the store.  LP was shaking his head in a manic way and having a sensory overload issue.  A woman in I'd say her 50's looks at him, she looks concerned,confused and disgusted , she then looks at my daughter and says "Aw,  but you have the most beautiful baby"  She walks away........

But I have the most beautiful baby?  BUT???? BUT??  I have the most beautiful children lady.  I was still getting LP to relax, and relax he did.  I was more concerned about him that I never let her comment hit me.  He did so well, he even helped me check out the food in the self check out.  BUT.....I have never had someone compliment one child and not the other, BUT?  I feel like she was saying, oh well that sucks that that child is a maniac BUT this one is so beautiful.

Word to the wise, Mind your business if you cant be nice.  Because you don't know how much you can hurt someone.  My son is beautiful, his stims are beautiful, his tantrums are beautiful, his speech delay is beautiful, his jumping is beautiful, his chipped smile is beautiful and his Autism is Beautiful.  It's all Beautiful because he is part of me, he is part of my husband and he is ours.  I always think people are aware, and in my area most people are.....but there is always one.  Be Aware, my Sons Autism Makes him Beautiful.

Families are Forever

Check the top right.....see the blinky?  Families are Forever.   I have a good Family, all of them from Florida to Montauk, a bunch of good people......Granted my favorites are here in this apartment with me.

For you in my life, you might not feel like you do much, but even just asking how LP is doing is supporting us, listening to our battles and victories that is support, saying Hi on facebook is support, understanding when I'm being a bitch for no reason is support, helping us financially is support, babysitting is support, letting me scream for no reason (goes with bitchy mood) is support, playing with my kids is support, inviting my husband over for wine and cigars is support, saying Im a good mom is support, inviting me over even if you know I will say no is support, telling me I'm still young and beautiful is support........all these little things and more mean a lot to me.

Thank you to our enormous family.....The S's, The Ks, the other S's and the H's......you guys are the best <3

I'm Supermom, an Autism diagnosis will never get me down......yea right

I wonder if its possible to be in denial for 4 months? Ok, maybe its not denial that i exactly suffer from, but instead extreme optimism. After LP's diagnosis, I thought to myself, "ok this is ok, we can do this" I smiled at the psychologist and said "That's what I thought it was, great at least now I know". I then began an aggressive Early Intervention program and read everything I could about Autism.

I never cried. I had the optimism that since it seemed to be a High Functioning form that my son would be perfectly fine. He would grow up to be the Aspie type, have a job, live alone, get married, have kids. I never have doubted any of those things in my mind until last week.

I told myself I would never get down, I would always be positive......that is until transition tantrum 500,000. LP has been through another round of evaluations, which once again placed him below what I expected. No matter how much he can read and memorize, the fact that he cant have an actual conversation with you that's not scripted puts him at a lower percentile compared to other kids.

In four months I never broke down.....the last 2 weeks I think I have broken down at least 4 times. I'm going to get all cliche now and say things like....I never pictured this as our life, I'm mourning the perfect child I wanted, parenting shouldn't be this difficult, I just want to go to a mom and me group with out my son running and jumping uncontrollably, I want strangers to stop staring, I don't want to be anxious about LP, I don't want to fight with my spouse about how to handle things with LP, I want to leave my son in Sunday school without disrupting the whole class, I want my son to understand that things are dangerous, I want regular discipline to work, i want to shower without worrying that LP has jumped off a chair or dresser......I could go on forever.

Don't get me wrong, in 4 months my son has gone from non verbal to reading. He has learned to sit and stand, give strangers hugs, give kisses, say Hi and Bye, ask for food or a drink, hold hands while we walk, love his sister to death, take a bath without crying, learn to love the pool.....and best of all, tell me he loves me.

Its a long road we are on.....i hit some bumps this week.....I'll be more optimistic tomorrow, i promise!

The Story of Diagnosis

On July 6th 2008 I was handed a beautiful 7lb 3oz baby boy. A boy, who I knew would have me wrapped around his finger for the rest of his life. My Little Professor (LP for Blog purposes) grew typically till around 9 months after he received a Flu shot (something I will go into another time). LP ended up in the ER a week after the vax with Bronchiolitis and low oxygen, a month after that he started vomiting on and off for 3 weeks with no explanation. At this point the chronic ear infection, which went on constantly for 10 months began, it was only till i stopped vaccinating him did the ear infections end.

It was at this point that LP's development rapidly slowed down. He never had the typical regression of skills like a lot of children with Autism do, instead its like time stood still. His body grew, but his speech did not. He learned to walk, but constantly fell or got hurt. He knew his name but never turned when called. He did risky things, without understanding the idea that things hurt. His behavior was beastly and regardless of the amount of time out, scolding or spanking he didn't improve.

The idea of Autism came into my mind when LP was 15 months old. I couldn't see how it could be true, he was cuddly and happy, he seemed so smart. I was told by doctors , friends, grandparents that boys develop speech slower, that it was normal, that the behavior was because of lack of discipline etc.

I believed it until LP was 2.5 and had him evaluated through Early Intervention. May I say, those who live in NY state are so blessed with the Early Intervention programs we have......if you are thinking of moving to get better services, NY is a good place to be. Only after 2 evaluations, one by a psychologist and a second by a Speech Therapist ,did reality really hit. LP was placed on the Autism Spectrum.......his Receptive Language was placed at about a 9-12 month level and his expressive at 15-18months......that was like a punch in the stomach. It was recommended he receive 10 x 90min session of ABA a week with 1 hour of parent training and 2 x 45 min speech sessions. This was another blow.....2x a day for 90min each session I would have strangers in my house, some days i would have 3 different therapist for a total of 4+ hours invading my personal space and bonding with my new baby( I had just had my daughter 3 months prior ).

So It began in February....and my son has progressed in Leaps and Bounds. Seems intelligence was never an issue, he is as a say a Little Professor. He has a knack for memorization and letters. He can read, and memorize about everything....today he told me to "taste the rainbow". ABA has been a blessing in terms of his behavior. Though his new found speech is a lot of memorized sentences and phrases and not as functional as it should be, I get to finally hear my sons voice. I always wondered what he sounded like.

Friday Is the day we meet about the transition from Early Intervention to our school district.....this will be my first fight of what I'm sure will be many. Wish me luck! New Chapters are always fun :/