Never.....

Trigger Warning "lol"
* Language*

Yesterday I was "in it" as I say.  I was all up in the Autism.  All up in it with the thought that hit me....This Shit is NEVER going  away.

That's a green table.  A green table my mother picked up second hand for Frankie for his room.  It was meant for him to color at, or play like a child should.  A few months after she picked up the table he was diagnosed....I said well, that will make a great area for ABA.

Brand new baby in hand I turned a room into an ABA center.  IN every IEP meeting they tell me how far he has come and I say how at 2 I thought he would never talk.... at the same time, as I turned his room in to therapy center I told myself with enough therapy he would be mainstream by kindergarten - first grade. Wrong.

People tell you how much things will change.  How once his speech is in order his behavior will regress, how when his behavior is better his processing will regress, a triangle I'm told, something will always suffer.   I didn't think it would go away, I didn't think one morning he would wake up Autism Free....that's not the case.

I know he will never be Autism Free, but yesterday it hit me.  He is going to be 5, as much as I feel I have been doing this forever, I'm STILL NEW here.  AS "typical" as I am, sometimes I can see scenarios and visions in my head.

Right now I picture myself on a dirt road.... I just tripped on my face due to all these behavioral problems and crap that have taken over my once sweet and mild mannered child.  I just look.....I look down this long never ending path full of tree roots and holes I'll probably trip in again.  I realize this shit is never going away.  I'm ok with it...its just weird to think about....too much to wrap my brain around.

He Works So Hard

Today I saw this Photo......

 

It came from Autism Spectrum Disorder, through their Eyes

It made me think.  

Next to me on the couch is a boy 3 months shy of 5.  For the last 2 years he has endured at minimum THREE hours or therapy 5 times a week and at most SIX.

At TWO and a HALF he began 2x 90min a day of ABA therapy.  Two times during the week you could also throw in a 45 minute session of Speech therapy.  

While other kids his age were at play groups and at the park, my baby was in a chair or on the floor with a skilled therapist teaching him how to play, how to listen, how to talk.  

Days were long, we were isolated.  In the beginning he would scream the whole time, other times he would throw things, try to flip a table.  This was his life, this was his normal.  

At 3 I placed him on a bus.....I placed him on a bus to a school where the school day was 6 hours and the commute was 20 minutes each way.  He gets, OT, PT, Speech, Group Play Therapy and Individual Therapy.  

He is a little boy, and he has the course load of a college kid.  I know at the end of the day it's all worth it....but he really is still just a baby <3

I cured my sons Autism with Granola Bars and Apple Juice from China

I might lose fans

I started many a blog with that warning....but its come to the point where I considered writing this anonymously.  Then i thought, stop being a coward and just come out with it.

My son was diagnosed with Autism and 2 months later I started a blog.  In those months I was bombarded with thoughts, ideas, "cures" and tons of opinions.  I've said it before, I was never depressed about it, I knew something happened with vaccines (my son, not ALL Autism), I knew in my mind he would be ok, we would be ok.

Then I saw it......I saw these moms talking about "recovery".  So there I fell, into the recovery circle.   We started therapy and I started "recovery".  I ran to the local health food store ad plopped down close to $300 in supplements.  I put my son through Blood tests, MRI's, EEG, Endoscopy's, nutrition consultations, Prescription meds....I did it all to help him, thats what I believed. 

Every morning I had him swallowing liquids and gummies and sending him to school.  Everyday I sat here and read about crazy things people were trying....CAMEL Milk....yes Camel milk to recover the Autism.

Here I am feeling like Shit because I cant afford Camel milk....shit I cant afford all these damn supplements to save my kids life.  After all those test, I found out my kid has celiacs and  MTFR gene mutation....so I suppose the tests were good but I NEVER found that crazy crap in his blood everyone told me I would.  I spread myself thin and almost burnt myself out to recover this kid....and then I snapped.  It was around the same time I got pregnant with the little guy and took a hiatus from Blogging.

I BURNT OUT.  I burnt out because there are people in this world that are holier then thou and have "recovered" their children.  They never feed their kids foods with preservatives, they give them special meds, they give them special baths, they go to special doctors and they talk down to everyone who doesn't go bankrupt trying to save their kid.

NOW here is the kicker........

My son.....seems...."recovered"

It was hard for me to come back to blogging...because he is doing so Damn well.  You know what I did?  Nothing.  I fed him GF Granola bars and Juice.  He ate chicken nuggets and cereal.  He watched TV and ate handfuls of candy. He only takes a multivitamin and he will vomit up fish oil.

Guess what, he woke up 6 months ago, looking pretty damn typical.

So my question is.....was it just time and therapy. I Thank God every day I did not bankrupt us.  When I say I do not have one cent left to try new "therapies" I mean it.  There is no way.....

And here he is....talking up a storm...looking at inclusion Kindergarten with hopes of mainstream soon after that and he never had a drop of camel milk, or was thrown in a hyperbaric chamber, never chelated, never on a strict diet, never given supplements around the clock.......just therapy, time and hope.

That's all I got.  I rambled I know, I know.  I know some of you feel like me....you read peoples status updates on facebook when it come to Autism and you feel inferior, I know I did (some days I still do).  Why didn't I do more, why don't I do more, why am I not a "warrior".  Because I'm not a warrior, I'm a mom, and at the end of the day I'm a good one.

At the end of the day...I RECOVERED MY SON.....on Granola Bars and Apple Juice made in China :D

My Son the Artist

No, he is not one of those kids thats some artistic Savant, but he does like his Crayons.  I mentioned earlier this week    "truth is you can paint how the world is suppose to be for your kids but in the end they are going to do what they want with it.....like put turtles in a tree and butterflies in the sun :)"

So here they are Flying pigs in the Sun, swimming chickens and turtles in a tree.  

Beautiful Words

Before Frankie was Diagnosed or uttered a word I always got the same comment.  "One day he will start talking and you will never get him to shut up.  You will long for the days when he didn't talk"  You have no idea how many times I heard that.  I remember being pregnant and overly hormonal crying, thinking I would never know what my son sounded like unless it was in nonsense Jargon, grunts or screaming. 

I wrote emails to people asking what I was suppose to do, where I was suppose to go since at that point I had abandoned out pediatrician, who was still on the wait and see bandwagon.  Most never got back because I was contacting the wrong people.  I remember being 8 months pregnant, sitting in the dark, convinced my son had Autism and it meant no future.

I had no Idea of the ins and outs of Autism.  I knew what I read on Web MD, what the doctors said that vaccines didn't cause it etc. etc.  So I kept getting him vaccinated and in January I finally had the evaluation done.  He knew how to say "Ready, Set, GO".....that was it. 

I'm thankful for the psychologist because he did let us down easy, and did give us hope. He really wasn't one of those types that coldly said Autism and walked out of the room to leave you like you just got punched in the stomach.  I think because of him I wasn't as depressed as I could have been.

After about 3 months of intense therapy, Frankie started one word comments, sometimes even 2.  In recent weeks he has started strings of sentences.  Today he said "I see Andrea, I go to school?"  to which I sadly had to say, "No we have to go to the Dr.".  We pulled up to the office and he said " mama that is Dr. Jassey office" 

He is amazing, and I love hearing his beautiful words!  Even when they are used improperly.    I cant help it, I love to hear him.  Granted its only been a few months, but I could hear him say Lia, Lia, Lia, Lia Lia.....all day and not care.  He can repeat the same question over and over or tell me his " feets is broken" when his shoe fell off for hours....it wouldn't matter.

I start thinking the non stop talking may eventually get to me.   But then I just have to bring myself back to that place when I thought he would never utter a word and I remember I am blessed that he can annoy me.

Progress every day

The Boy is hysterical today!  Today my son played and peed.....oh and he drew pictures too!  Like I said in the prior post, I was basically home all day.  So we did the potty every 30 minutes and little man went 6 times!  One of those times he actually pooped.....well only a little.  The kids going to give himself hemorrhoids, he things he has to push to get pee pee out.  Tried not to laugh, I giggled a little, all he wanted was candy. 

He played Little People Mall most of the day.  Setting up the people in a car and driving them around.  He is so funny, he told me an octopus was a Pizza man, not too sure where he got that from.  His play skills are coming along beautifully!

Lastly tonight he was drawing with his Magnadoodle and i had to bust out laughing.  First he is Screaming "MAMA, WIA (how he says Baby Divas name), DADDY!" over and over.  So me and Baby Diva head over to his room and he looks at me and says "Mama, Wia, Wheres Daddy?....DADDY!!!!!"  I laughed out of joy, I can not believe he said that!  It made sense, it was appropriate!  Earlier he had said "daddy what happened?" when Baby Diva was crying......I wasn't sure if it was directed at her, but this time I knew.  So he wanted us to come in so he could show us his drawings......which all looked like ovals to us but, he was proud.  I posted them below.....Enjoy the Art show.  I laughed my butt off at the happy camel face!

This is the SUN

This is "Make Dots"

 This is "Camel, Happy Face"

 This is "A Shell"

 This is "A Walrus".....um ok looks like another oval

The Cost of Autism

First let me say, I am lucky, I live in a great school district that will pay for my sons preschool.  Most of the things I would like to do to help my son are extra, but like I have said, once you have a child you will do ANYTHING to help them.  I find that a lot of people not effected have no idea the cost, time, stress that is placed on us parents who are raising 1, 2 even 3 children with Autism.  So here I will lay it out.....and as of now, nothing is covered by insurance :)

Average Cost home ABA -  $60-$100 per hour.....20-40 hours a week recommended = $1,200- $4,000


Average Cost of Speech Therapy - $50-$80 an hour  2 hours a week = $100-$160


Average cost of Occupational Therapy - $70-$120 an hour 2 hours a week = $140- $240


Average cost of Physical Therapy - $50- $120 an hour 2 hours a week = $100- $240


Average Cost of Special Ed School with Autistic Program- $35,000 - $93,000 a year


OK those things for most of us in NY state are covered.....that is except that amount of ABA hours, I get 15 hours covered and can not pay for the extra.  Once my son starts school he will get no ABA, that is unless I get a doctor to say he needs it.  There is no way on earth I can afford 1/8th of that so I will have to do it myself at home which leads me to...........


Loss of wages because one parents must now be a teacher - 20k-60k a year..... oh yea people forget that part.

Now the Extras 

School supplies and Tools (language builder cards, ipads, apps, speech therapy tools, trampolines, sensory tools, swings, feeding tools ) - $200 - $5,000


Hyperbaric Treatments - Recommended 40 hour treatments = $4,000

Vitamins and Supplements =  $300-$1,000 a year depending on severity

Biofeedback = 60 hours with in one year @ $150 a session = $9,000

Chelation Therapy- $75- $125 an hour...I'm not even sure what the hours are on this but I know the cost is in the thousands.  

Gluten free and Casein free diets - I cant even begin to go into this....this is something I CAN NOT do.......I can not pay $4 for a loaf of bread.  Everything is literally twice the price of regular.  i dont have the will power to go through with this.... .I suppose is all else failed, I would do it. 


Now I will get contreversial.......there are some groups that do not help with these things mentioned above (Autism Speaks).  People walk for Autism and raise awareness and I love it.  My issue is where does the money go.....the largest chunk to salaries, the second chunk to research.....25 million to research to find one gene (which doesnt exist) that causes Autism. $1.7 million went to 34 families to help them........that's out of about 72 Million raised.   I say instead find an organization that give the money to the FAMILIES.  I had an issue lately where my husband wanted to start our own run to put money away to look into getting the Hyperbaric Treatments at St. Josephs in Bethpage......I tried to tell him that we cant really start our own run, but he was just trying to help.   There are plenty of local organizations in everyone's areas that help the kids, and help the families, donate to them.  Here On long Island we have the Nassau/Suffolk Austim Society, they set up family days free of charge at different museums and places around the area free of charge for families. 

Having a Child with Special Needs is exhausting, its stressful in every aspect.  And if anything check out this Blog  From Lost and Tired  <------he does a wonderful job of explaining what us parents really need.  


Much <3