Pinch me, I must be dreaming

This weekend was like a dream, a dream come true.  But the kind of dream that took hours and hours and hours of blood, sweat and tears to happen.

There was a time when autism had held us hostage, and it was so brutal, and tortured our family and my children so badly we couldn't do things that most typical families take for granted.

Last year we tried to take our first vacation ever at a hotel, and it was an epic disaster.  While it had good moments, it just was so deflating to my spirit, ego and soul, I never thought it was going to get better from there.

But after that, I took a look at all we were doing with the kids took a step back, re-evaluated, therapies, medications, and just our life an general and rocked every one's world and changed everything.  I changed my mindset, I changed therapy companies, I changed medications, or rather took one of the kids off medication, and I changed how I looked at autism.  I was tired of always feeling defeated.

So for years we worked to get our kids to do the simplest things, like go to the beach.  We live in Southern California for crying out loud.  How do you NOT go to the beach.  There were times I couldn't even drive my car on Pacific Coast Highway because my kids and their autism would lose their shit in the car being that close to the ocean.........It SUCKED ASS.

So everyone put on their big kid underwear, dug deep and worked, worked hard, tirelessly, and thought outside the box, to get these kids out in the community, without torturing them OR the community.

So hours and hours and hours of walking up and down the street looking at the ocean, to walking TO the sand, over and over and over.

This weekend as we have for the last 4 years, we have gone down to Salt Creek Beach to watch the Surfing Santa contest, and for the first 2 it was a snot, sweat, crying, anxiety ridden morning that made me want to just give up.  But I don't and I can't give up on them!  So this year we walked to the beach, and my kids put on their bathing suits and went in the friggin' ocean.    And then the founder of Surfers Healing asked if Franklin wanted to surf, Franklin nodded his head and started to drag a surfboard to the beach, and then I almost fainted out of disbelief!  (not really) 

So when I would cry and feel alone, and wonder if I would ever see things happen with my kids, and when I wanted to stop everything because it was so hard, and I was miserable and they were miserable, things were actually happening.  Really things were happening, and their lives and our lives and everything around us was and is getting better, easier, and different.  Make no mistake, there are days like today that suck complete ass, and there are always going to be huge struggles and lots and lots of work to do.  My attitude and outlook on that work has changed, and I have hope, that there lives will be good and get better a little bit everyday.  

Rebecca

Don't Get out the Party Hat Yet

Every April we go through Autism Awareness Month, or Autism Action Month.  Because I have Autism in my family with my 2 children, we are acutely aware of autism and all that comes with it.  I'm grateful that April comes and promotes at least awareness of autism.  Even though the numbers of those diagnosed with autism have risen dramatically in the 6 years we've been in the autism arena, I'm shocked how many people have no idea about it, and not that it's their fault or anything.  I didn't know anything about it until I was baptized by the fire of a diagnosis.

I love adore, and worship my kids and would walk through fire or to the end of the earth for them.  I've participated in some hokey therapies and treatments and would do every single thing over to make sure I left no stone unturned to help my kids beat autism.

What I have never understood, and I get a lot of flak for is I do not and have not found the celebration of autism.  While it's something my kids have, it doesn't have them.  We work hard, and constantly and consistently to help crack the shell that is surrounding my children.  One of my children is also severely impacted by autism, non verbal, and his life is extraordinarily challenging, there is NOTHING about his autism that is a party or deserves a parade.  It's horrible some of the days and nights he goes through with his neurological torture.  I don't even think some parents of children with autism that are verbal and high functioning can even relate to this part of the autism spectrum.  Severe autism is nothing that is to be celebrated.  I wouldn't celebrate someone getting a stage IV Gleoblastoma brain tumor, as autism, there is not cause or cure., I don't celebrate MS, I don't celebrate ALS.  I show compassion and to the people effected by these things, they're the same.  They are life changing ailments that make your life different, and not always for the better.

The celebrations that I do have every day, are the lives of my boys, and every single accomplishment that I have learned to not take for granted.  The first time my son used a tissue to wipe his nose instead of his shirt sleeve.  When he picked up his mess from a meltdown and put it back in the toybox, the hugs I get, the new things we works so hard to get them to try and have success (even after years of therapy).  I celebrate the accomplishments, and the ways we find joy and give them happiness.  I celebrate our family and how even though we are different and have to take 2 cars everywhere we go in case autism hijacks our event, we are a family, and we do autism together great.  The friends we have made in the journey of autism, are amazing because autism is isolating, and these families have all come together to help, hug, and understand in the lonely heartbreaking world of autism.  I couldn't even imagine going through this journey without some of my autism mommies and daddies, we are friggin AMAZING, even if the rest of the world doesn't get it.

The things that keep me up at night and I'll never be able to celebrate.
What will happen to my kids when I die?  Who will care for them, they have family that doesn't even bother to try to know them?  Will Franklin ever talk?  Where will they live?  Is someone bullying them at school, and they don't even know how to tell me?  Is a teacher or therapist not giving them their treatment because they know my kids can't tattle on them?  Is my house secure enough so they can't get out?  What was that sound?  Where is he?  Did he eat? Did he poop?  How did he get that bruise?  Is that a seizure? Is that an allergy?  Is he sick?  I wonder if something hurts him?  Are the professionals telling me the truth?  Will this treatment work?  What if this treatment doesn't work?  Will this treatment hurt him or affect him negatively????  See the racing mind NEVER EVER stops.  I'm more fearful of the autism,  because the autism hurts my kid sometimes.  Literally and figuratively.   Those are all the fears worries and doubts that I have to overcome before I can put a party hat on and whoop it up about autism.

What autism has given me is a strength I didn't know was possible, a perseverance of a warrior, and a belief and faith in my kids, and my God that I didn't know was there.  So those little things I celebrate, but Autism, I just don't, I just can't.  My kids are more than autism, and I don't just want them to be that label I want them to be Franklin and Jackson and I want the world, their school and our families to see the awesomeness that I see in them everyday.  So while yes I will every single solitary day adore, worship and celebrate my boys, I don't yet have a reason or willingness to celebrate the diagnosis, I may not ever get there, but celebrating the successes of my kids, and helping them overcome the obstacles that autism throws down in front of them every day.  I celebrate the victories we have over autism.

Autism had a Happy Thanksgiving

This year we celebrated Thanksgiving with my husbands family at my in-laws house.  All of his family for the most part have been incredibly kind and accommodating to my kids special needs.

We arrived with our truckload of toys, games, iPads, food, snacks, changes of clothes, and ear muffs for our couple of hour visit.  We look like we are unpacking a clown care with all of the "stuff" needed by my kids.  Having all of the "stuff" makes our success ratio much higher, even if they don't use any of it, I like to have familiar things available to them when anxiety or sensory overload kicks in.

The food, company, love and laughter were wonderful.  Besides my son pooping in the corner of the spare bedroom, the day was a total success.  Autism likes to do that to me, make sure that I have episodes of embarrassment, humility, or mortification just to keep me grounded and in my place, making sure I don't get too cocky.  Autism tries to keep me down to earth, the bastard.

What I totally loved about this holiday was that the 4 of us arrived together and left together.  We always bring 2 cars places just in case autism decides it is going to bitch slap us around.  Didn't happen this time.  For the first time in a long time all of us got to participate in all of the festivities of the holiday.   That is what I am thankful for.

Rebecca

My apology to my son

Dear Franklin,

I am so sorry and have been full of doubt and guilt for – well doubt of my mothering abilities probably since your birth and guilt since the second some professional told me you had autism.  I let some people that work with you convince me that you were not worthy of the help you need, I let their words cloud my judgment where you were concerned, and I let precious time be wasted. 

You see, there is no instruction manual for typical children, and there is absolutely no manual to maneuver your way through the labyrinth of life after you are labeled  “special needs”.   There are so called “professionals” that really have a passion for children like you and want to help, but are corn hold because of a horrible defective system.  There are so called professionals that are out for a money grab, and don’t really care if they help you or not, they just want to get their check.  There are professionals that pull at the heartstrings of families that so desperately want help, with no guarantees, and very large expenses.  I’ve pretty much lost faith in the professionals – it has been the mommies, and the daddies, that have lifted us up, and helped us and guided the families in how to survive the jungle of special education.  And for those families we will never be able to express our true gratitude, except to pay it forward to the newly diagnosed families.

Mommy took the professionals at their word that they had your best interests at heart.  I believed them when they said you were getting an appropriate amount of services for your level of cognition.  (WHICH WAS A LIE)

 I believed them, when they said this might be as good as you get. (WHICH IS NOT TRUE)

 I believed them when they said, you may want to consider just making him comfortable this might be all there is for him. (WHICH IS UNACCEPTABLE)

 I believed them, when they said you were not teachable because your behavior was too challenging.  (YOU ARE NOT THE PROBLEM, THE PROFESSIONALS ARE THE PROBLEM)

 I believed them when they tried to make me doubt you and what is inside, and lost sight of what an amazing little boy you are.

So my pledge to you baby boy, is to NEVER EVER take a professionals word with a bit of sincerity.  I will always find a way to help you.  I will never take no for an answer. I will never let anyone lessen your worth because you are different, I will never let someone work with you that does not believe in you and your abilities.  I will not let anyone work with you that do not think they are capable of offering solution to your life.  I will make sure that I always listen to my mommy gut, and will not let a bunch of initials behind someone’s name determine that they know you better than me, after a 20 minute assessment. I will take this ProLoQuo 2 Go, and let it give you the voice you so desperately deserve.  I want nothing more in my life to hear your thoughts and wants, and likes and dislikes.  I can't wait for wait is about to come.  In 2 days since another mommy told me how to help you, you have amazed me (and I think yourself) with what you can do.

You are the most amazing thing I have done with my life, and I’m so sorry I let my loyalty to you, and what I thought was best for you weaken, because of the minutia that I was being fed by some stupid ignorant people with degrees.  I will never stop believing in you. I will go to the ends of the earth to search out help for you and I will always make sure that YOUR best interest is in my heart, not the convenience of a few.

I love you baby, and I will never stop standing strong for you.

Mommy