Occupational Therapy at home.

Recipe for awesome homemade occupational therapy moment at Casa Silva

• 1 Trampoline courtesy of N-Zilla's God Parents
• 1 set of River stones...again courtesy fo N-Zilla's God Parents
• Floor matt.
• Homemade weighted blanket
• Homemade body sock.
• Super Mario dolls lying around.
• 1 sleepy Dad 
• 1 hyper Little sister 
• 1 excited N-Zilla

...And your ready to roll.

...good things too...

 

As stressful as this whole ARD/IEP business has been, their have been lots of good things too.

Like this morning...N-Zilla stayed home from school today and while I checked my email he got a wire (from I don't know where) and pretended to go fishing.  He came up to me with his imaginary catch and asked me if I was hungry.  This is kinda of a amazing thing.  Spontaneous imagination isn't something that N-Zilla does much.  I cried the first time he pretend to take a picture with a plastic container.  Everything before that was trains, trains, train. 

AND...

Last week we missed the bus.  Meaning N-Zilla and I stayed up way to late and I hit the snooze button one to many times.   Before getting myself to work, I took Talulah to daycare, dropped off Crazy Horse at school, and was on my way to take N-Zilla to school  4 exits away.  We saw a stray dog when N-Zilla said, " Oh Mommy a puppy. He he he sad. He he he mom sad.  Puppy need look for him mommy and him daddy. He he he need 'em".   He was having a conversation with me about something.  And it was WONDERFUL!   Before that it has been very rare that he has any conversations with me about anything other then his likes.  This was the first time at 4 1/2 years old that N-Zilla talked to me about something that was happening.   It was unexpected.  I played it cool not wanting to embarrass him.  I just carried on with the conversation but inside I felt as if I was watching him walk across a stage getting an award or graduating.  That  was how much pride I felt for my little boy.  

AND...

A few weekends ago, I was folding laundry (again) and in the corner of my eye I saw N-Zlla walk into the restroom lift the toilet seat and go to the restroom.  By himself.  I heard the faucet turn off.  N-Zilla walked to me and this is how our conversation went:

N-Zilla: I boy

Me:     Yes, yes you are a boy  

N-Zilla: I bust da Gems

Me: You bust the jams?    

N-Zilla: NO! da gems da gems I bust da gems.

Me: Do you mean you washed your hands?

N-Zilla: Yes I bust da gems! (lifts hands )

Me: You washed your hand and washed off the germs?

N-Zilla: Yes!

Me: Oh! well, good job then.

This was huge!  He went to the bathroom by himself.  I usually have alarms on my phone to remind me that he needs to sit on the toilet.  He washed his hands by himself AND told me about it.  Another proud moment. 

So yeah...ARDS are stressful, having strict routines to follow stresses me out but lots of good things are happening too. 

  

Rant's and Rave's and IEP's

It's that time of year again. ARD.   We get to go over N-Zilla's IEP. For of you that don't know A.R.D stands for Admissions. Review. Dismissal.  and IEP is Individual Education Plan.  

When N-Zilla's PPCD (Preschool Program for Children with Disabilities) pre-k teacher, Mrs J taught him last year the ARD's were a piece of gluten free cake.    Now...not so much.  I will never forget a private conversation we had earlier this year (Mrs. J was moved to a different elementary school...I was told that the PPCD program had closed and N-Zilla's wonderful teacher had to move) with Mrs. J.  Earlier in the year around October, the ARD committee wanted to have N-Zilla move to another campus that had a PPCD program in place since the one where he was at was closing.   I disagreed.  For many reasons.  Mostly how they closed the program and moved a wonderful teacher was wrong.  On a Thursday she was told that Friday she would be moving to another school.  And how it screwed N-Zilla.   I disagreed, and disagreed some more.  Finally after many phone calls.  Searching on the Web, reading and reading the IDEA parent booklet, late night convo's,coffee and tears with the Bestie AND speaking with a advocate, it was decided that staying at his current school would be the LRE (Least Restrictive Environment) for N-Zilla.  At work I ran into Mrs. J and we talked about the situation.  I told her that I couldn't believe it was going to be this hard to be heard and make a decision for my son.  I will never forget the words that she said to me, "It's only going to get harder.  You've got to be prepared and continue to be N-Zilla's advocate".

Gulp.   She was right.  I was kinda hoping that the whole N-Zilla get's to stay debacle was a one time thing.  This is our first ARD after the great ARD of  October and it is just as heated.  

N-Zilla will be going to Kindergarten next fall...he currently is the only PPCD student at his present school and our home campus is not "PPCD qualified" or has the "PPCD qualified staff" equipet to service N-Zilla so it's being told to me.  It is being suggested strongly that N-Zilla attends an other campus that is PPCD "ready".  He will be in a General Ed class with a kinder teacher and a Para-Aid (Paraprofessional), the Spec Ed teacher will over-see his progress and be a resource for his Kinder teacher. I can not understand why this can not happen at his home campus.  N-Zilla can not be the only student that has PPD-NOS (Pervasive developmental disorder not otherwise specified) or has ASD ( Autism Spectrum Disorder).  N-Zilla can not be the only student at our home campus that needs Spec Ed resources.  He just can't be the only one!

(just breath Adee...just breath)

I have a very dear friend...I refer to her as The Bestie.  She is also going through this right now.  Tis the season.  I won't go into her ARD's and IEP's and BIP's (Behavioral Intervention Plan) because that is her business to share or not...but I will say, I feel ya Gurl.   When making the best educational decision for your child and attending your ARD-you feel out numbered. 

And before you get into your car or mini-van...what ever, you feel like you are going to be fighting in a MMA match.  Your heart is pumping out of your eyeballs and you've got cotton mouth from drinking 20 cups of coffee.  You wonder if you should have taken your friend up on that offer for a Xanny.

At some point in the ARD you wanna say AW HELL NO, MY SON WILL NOT RIDE THE BUS AT 5:45 IN THE MORNING OR BE IN THE APPLE UNIT.   But you don't because you're the parent and no one will take you seriously if you do.

 Urgh...and don't forget...DON'T. CRY.   At least I try not to .But just in case I do I bring my own tissues I don't want to be patronized.  AND I wear water proof mascara.

After it all, I day dream that my husband said things like this before and after these meeting.  I bet you do too Bestie ;)

 Am I right?

Happy Autism Awareness Month

This month is Autism Awareness Month.  

I never imagined that 5 years ago I would be advocating for Autism.

But here I am.  The mother of 4 children.  

I myself have sensory issues. 

Their is so much to say and so many different perspectives to say it from.

I often find myself with writers block or fear by the time I get to the computer. 

All day today you have seen post about Autism Awareness Month.a

Shine a Light on Autism

And this month many states and cities will have walks raising money and awareness for and about Autism.
We are participating this year in Any Baby Can's Annual Walk for Autism.

So this is what I have to say 
about Autism. Me. Us.
I couldn't imagine life without anyone of my children.
I can not imagine our life without Autism in it.
I have been through many heartaches in my life.  Many ups and downs.
Not to mention having my own set of learning disabilities to over come.
All of that has prepared me to be a parent to my children.  I am a better mother in spite of these things.
My son N-Zilla,

he is on the AU spectrum.  It is a disorder that he has. Not the disorder has him.
He is 1 in 88 or 1 in 54 and my 1 in a million.
Days are good. Days are bad.  But he is always my N-Zilla.  
And I always love him.

So, Happy Autism Awareness Month

If you give a mother a copy of OT then she will obsess

After all these years (all of 3 years)  I keep thinking that I get the hang of this whole Autism thing.  Then something happens like a OT assessment then I'm left questioning myself on what I could have done in the past 3 years to help N-Zilla more. 


Recently...a little over a month now N-Zilla has been going to speech therapy in Alamo Heights at Pediatrics Therapy assc.   Even more recently he had a OT evaluation.  This past Wednesday was his first OT Therapy Session.  Usually the first are more formal and the Therapist briefly talks to you about the eval and get some tips from you and they tell you some tips.  Then you leave the room while your child and therapist do OT

You get a copy of the parent guide and sign a few papers.  You get a copy of the results.  I save those to read in the car on the ride home, and again at night before I go to bed, and once more in the morning at work behind a desk drinking my coffee to let it really sink in.  

"3-4 times a week".  

*Sigh...such things are life.  


In the meantime:

• kids are back in sport including N-Zilla and excluding Talulah-she is too young-.
• I harbor a secret grudge that Mr. S has yet to ask me about N-Zilla's OT, Speech or about my day.
• The time change hasn't sunk in at our house yet.  3 out 5 day's we've missed the bus.

Until the next OT.  Have a great day folks.

Team N-Zilla Walk for Autism

                            Team N-Zilla

 Dear Family and Friends, We are not sure if you know by now, chances are if you are on fb you have seen some of the ups and downs and humor …Our son Enso is on the Autism Spectrum.  In the past Ramon and I have been vague about it only our closes Friends and family have known and at times we have held back.  Simply because AU can be confusing to parents and we didn't want to have to explain or defend our son.   In the past 3 years we have found out things that help and not help Enso.  He has been in ECI, PPCD Pre-K and most recently Speech Therapy, Occupational Therapy and Physical Therapy.  

Like all our children, we are very proud of our Enso.  He has taught all of us so much.  Wednesday and Zen are great and I would like to say because of Enso they have more patients then the average pre teen/teen. And We all have a better sense of humor.

Enso has also educated us.  Before we had Enso Autism was foreign bad word.    Now being parents with a child on the spectrum we know a few things: 1) Autism isn’t a death sentence.  Early intervention has helped us so much. 2) 1 in 88 children and 1 in 54 boys are on the Autism Spectrum.  3).   Autism, well having similarities…it’s not a one size fits all disorder.    

This year we are Walking For Autism with Any Baby Can.  Any Baby can (anybabycansa.org)is non-profit organization that is a great resource for families and their children with special needs.  They have helped us and this year we want to give back.  Join Team N-Zilla and Walk with us or Donate.   Go to https://secure.getmeregistered.com/homepage.php?id=4642 to join or donate.  It’s a great cause and a great way to educate. With statistics like 1-88 chances are you know or love someone on the spectrum.

Thank you

Ramon and Adee

Autism, N-Zilla, and James.

I know.  I know.  I left a cliff hanger with my last post.  I promise I will get to it. I still have lots to say about the district where my children attend school.

For now I will write about this...

 ...The ironic thing is when N-Zilla was a toddler I thought I had no time to do anything.  I felt like I was stuck at home making sure he didn't break anything or hurt himself.  

Fighting to get to bed at a decent hour and using my blogs as therapy so I didn't fall into a deep depression.  Now it seems like I REALLY have no time for ANYTHING.  

I would like to say that things are running a little smoother in the ole'Casa De N-Zilla.  You see we live life on the spectrum.  We also have three other children.  Things. Are. Scheduled.  

This leaves little time for leisurely things for Mr. S and I.  Like phone calls.  Wasting time on FB or Twitter.  Staying up late.  And for me blogging.    

I scan the phone when I'm at work for tweets and fb messages then I make a mental note that later when all the kids are asleep I will respond to them.  It rarely happens that way.

But then there are days like today.  Three out of four kids are home sick.  I'm home from work taking care of them.  And two are sleeping.  The sink is full of dirty dishes and their is stale laundry in the washer that I will have to re-wash.

I had a moment to check my FB.  My Uncle sent me this message:
Hi Adee I was wondering if you could share the fund raiser info to your followers. It is to build a sensory room at James' school. I dont know if you still have a blog. But there is a widget that you could include on your blog it shows li

ke a advertisement. I would appreciate it. We have tried to contact celebrities, groups and friends and family. You can donate 1 dollar or 100. This will benefit these autistic kids from James and all the classes after. Thanks and Hope all is well with all of you. Take care and God Bless the link ishttp://www.gofundme.com/1j26dc

I forget that just like N-Zilla is my 1-88, I also have family members who have their 1 in 88.  I often feel as do many other parents, that I am doing this all by myself.  Being his advocate.  His voice.  His educator.  His everything else on top of being his parent because the area we live in doesn't have the facilities we need.  And still so many people have a off-putting perception  about Autism.  "If I can't see it...it doesn't exists".    

My Uncle (whom is more a brother) and his wife are going through the same thing.  James is their 1 in 88.   They are raising money to fund  a Sensory Integration Clinic at James's Pre-school.  Like N-Zilla, with early Intervention James is able to grow leaps and bounds.  
A Sensory Intergration Clinic will continue to help children and familes with AU/ASD. 

 Just like here in San Antonio in the Judson ISD budget cuts are affecting special needs programs all over.  They are asking for help to build a Sensory Integration Clinic  at the Pre-School Autism Program at Rolling Ridge Elementary.  And just like here in JISD...the funding has to come from us.  So please donate to this great cause.   It would help so many children and famlies.  With the statistics like 1 in 88...more then likely someone you know will have ASD or will have children with ASD.   Please donate!  

And now I will get back to my laundry.


Click on the link below or in purple to read more about James, Rolling Ridge Elementary, and how to donate.

Help Fund Our Autism Sensory Clinic

Also...Check out this blog:

Megcentric: A Very Worthy Cause