Destination: Hope

Today I turn my blog over to an extraordinary woman name Fatima.
She lives here in Eureka, with her husband, two boys, and two dogs she rarely has time to pet.She is extraordinary because she holds down a very grown up job (honestly…..she wears nice clothes and sits behind a desk in a fancy office……), she runs an amazing organization called FAANFamilies Advocating Autism Now that has sensory friendly movie events, gifts iPads to classrooms, and so much more.Oh yeah.  And she’s a special needs mom.
Heck.  I’m tired just reading her credentials.

I’ve been bugging her for a year or so to guest write for me.
The other day she posted about her son’s IEP and I thought: THIS is the one.  THIS is the story that needs to be told.
Why?
Because in all the autism / TSC groups I belong to– there are three letters that strike fear, terror, anger, and frustration into the hearts of special needs parents: IEP. Individual Education Plan.

THIS IEP had a happy ending.
THIS is a story of hope.
THIS is a story keeping you eye on the prize
AND?
It’s got pictures of her son, who I fell in love with when I work in the PALs program.
A little cutie patatootie sitting on the rug, flipping through pages of a book with his effervescent smile and indomitable spirit.

Readers?
May I introduce to you,
the lovely Fatima…..
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To do a guest blog or not to do a guest blog?
My goal in the beginning  of writing this was to be witty and sound semi-  intelligent, now I just want to get through it without losing my dinner. 🙂

My amazing son, Caden was diagnosed with Fragile X Syndrome at the age of one and Autism at the age of two.  He has a wonderful little brother, Tate that was diagnosed with Fragile X at the super young age of 3 months.  The road has been windy, long, scary and has had so many twists and  turns that I have wanted to get off it many times.

 The light at the end of the tunnel must not have been in service during the first 2 years ofCaden’s diagnosis. (or so we thought)

Now fast forward at least 5 years…. Caden is 8 and I can see all that he has to offer to his family, his friends, and…..
THE WORLD.
This kids is destined for greatness…..
Today was a big day for our family.
We had an IEP (individualized education plan)  meeting for Caden to be fully mainstreamed in the Fall at Washington Elementary. For those of you that don’t know what that means– Caden will be in the regular ed classroom for the day, with necessary breaks, etc., as needed.   Currently, he is in special day and is mainstreamed.You couldn’t have told me a year ago that this day would come. Not because I didn’t believe in Caden, but because I didn’t know how many roadblocks we would be up against.
 His very first IEP was with 22 people in a large conference room with the air conditioner on in January of 2009.  Who the heck needs an air conditioner in Humboldt County?  We were nervous, uncomfortable and freezing our asses off.  All we wanted to do was to make sure our son received the best possible education.
Easy? Not so much!
Three hours later, my husband and I walked out of there dumbfounded.  What the heck had just happened?  Yes, Caden had received the services that we requested, but there was so much red tape, so many unsmiling faces, just so much.. SHIT.    It was a sad day, and I remember crying for a long time that night dreaming of what our future was going to look like.
Fight after fight.   Could we handle this? Were we equipped to handle it?  Did I really even want to handle this?My, how things have changed…..In this IEP meeting we discussed Caden’s growth and also the challenges that he will face. But, as a TEAM (yes, a real team) we decided that mainstreaming him is in his very best interest. By the end of the meeting, most of us all were in tears.

Happy tears.
Caden’s aide (not a worthy name for her at all) is truly amazing and she knows when he needs her support and when he can “fly” on his own. Caden’s 2nd grade teacher has truly shown our family what I can expect for him. She has paved the way for Caden to excel in anything he chooses to do. His classmates are amazing and I will thank his teacher for the rest of her life for showing them how to accept/love/share/cherish  Caden as their friend. The sky is the limit for him and we are so blessed that we have a school that will support Caden in being the best student he can be.
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” Maya Angelou
 cadenCadenhappy
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Tuberous Sclerosis Awareness Day

oh crap.
May 15th has been deemed Tuberous Sclerosis Awareness Day.
May 15th came and went.
And it was only because I saw other people’s memes that I was able to throw a couple of reminders up on Jack’s FaceBook page.

But the actual factual truth is:
I don’t really care about it.

There I said it and I would say it again if I had to.
Sure, I totally care if you or your kid has it.  I can give you all sorts of info and advise you on what has and hasn’t worked for us.
But for reals?
I AM ALL TOO AWARE.

What I would like is a day of UNawareness.
I would love a day that I could sleep in and awake to find my twelve-year-old boy sitting on the couch , slurping down cereal and milk , and playing video games.
I would love a day that did not include incredible amounts of medicine and diaper changes.
I would love a day that did not require awareness of possible seizures.
I would love a day that did require me to be hyper vigilant.

I would love a day that I was NOT aware of the existence of Tuberous Sclerosis Complex and all that goes with it.

But there is no day for that.
And the thought of the day when I no longer have to think about it is too sad to imagine, because that means that Jack is  no longer in my life.

Now….. for all you people out there, raising awareness and fighting the fight:
I applaud you.
I commend you.
I THANK YOU
for doing what I cannot.
for doing what I am too tired and frazzled to do.

Please forgive me if I fall short on raising awareness and focus instead on raising Jack.

Jackson.  I a aware that he has Tuberous Sclerosis Complex

Jackson. I a aware that he has Tuberous Sclerosis Complex