Thursday, April 25, 2013

I'm right there......

I had a emotionally mommy moment earlier.  I have the benefit of having friends with children similar to vent I did to Adventures on the Spectrum.  I've come to realize, us mamas hate showing our vulnerability, but sometimes we must, to show we are human.

This is my son.....The son that 2+ years ago did not speak.  The son who did not respond to his name, stimmed most of the day and had no real way to communicate with me.  I remember all i wanted him to do was be able to tell me he wanted juice or that he was hungry.  One of the rock bottom times for me was when he ate a crayon, he ate a crayon because he was hungry, he was hungry and couldn't tell me.

The years have past and I have a fully verbal child.....who can be rude at times.  Well, he is actually rude most of the time.  If I took Frankie out with me 1:1 and placed no demands on him, he would look and act like a typical 4.5 year old.  I am right there....... the trouble is, his emotions.  He still has great difficulty reading peoples emotions, with that comes frustration and frustration leads to MELT DOWN.   The other day my heart ached as he tickled his sister (who was now annoyed and was crying) he yelled at her "Lia, are you laughing or crying?  I don't know, I can't tell "  .  He has issues reading social cues from other kids so he doesn't understand kids don't like him in their faces, kids run away and he chases them......the kids freak out.  My husband trains Brazilian Jiu Jitsu and he has won many my son thinks his dad is a fighter and instead of cuddling and hugging he is constantly trying to "fight him".  When we correct the "fighting"......or anything for that matter, MELT DOWN.  Ask him to wait MELT DOWN, ask him to get on the bus when he is in the middle of watching 3rd and bird MELT DOWN, Tell him pretzels is not a dinner get the idea.

Being on this end of the spectrum I feel like we are right there...... if I could remedy his last few issues he could be happy all day.  Only  few steps from forming relationships..... I feel so close but then again far away.  I don't know how long it will take for him to get there.....if he will ever get there.

Please don't get me wrong, In the end its not about me.  I don't want him to change for me, I just want him to be comfortable.

Tuesday, April 2, 2013

He Works So Hard

Today I saw this Photo......

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 don't like Autism Speaks.....but Im still wearing Blue

Today is Tuesday, April 2nd 2013.  Today is World Autism Awareness Day.  Today we are rocking BLUE.  Today I refused to get into politics about Autism. I honor my son, his friends and their parents for the struggles and obstacles they face.  I honor them for the victories they have achieved and the miles they have come.  I honor them by "Lighting it up BLUE"

I wasn't even going to go here today.  I didn't even think I would post a blog honestly.  Then my personal new feed on facebook started to piss me off.  Friends making comments about how they refuse to do anything Blue because Autism Speaks is evil, how vaccines cause Autism, how the world is ending, how every kid is 50 years will have Autism.....I could go on. 

First, I personally do NOT stand with Autism Speaks.  I do not like their organization practices, I would love to see them spending more money on helping families then doing endless research studies that always come out empty or inconclusive.  Because of this I do not donate money to Autism Speaks but instead to other local non for profit organizations local to me.  Let me tell you...just because we do not give money to Autism Speaks, or agree with their practices I  WILL light it up Blue and I will acknowledge that they are the ones who got the ball rolling for ALL of us.   

I am a strong believer that there are many causes of Autism, some being vaccines.  Guess who opened the doors of Autism Awareness to get the voice of the Anti-vaxer out there....Autism Speaks.  They brought it to the surface, they are the reason so many kids have been evaluated, or parents have become educated on vaccine and environmental safety.  

I know many can say, "I am aware, i live this everyday"  we don't realize though, there are so many who are not.  There are TONS of people that have no idea what Autism is.  They see it talked about but couldn't tell you one characteristic of it.  So yes, I live it everyday, and April is annoying, but i keep telling myself not everyone knows.  Maybe something I do in April will educate one person who can get a kid into therapy early....nothing hurts more then hearing someone say "oh he's 3.5, he doesn't talk but that's ok, he's a boy".... I cringe, because not everyone knows. 

So put politics aside, put cause aside and Honor these kids......put on your blue big kid underpants and spread the word