Happy Warrior Day

Mothers Day, it's here, and I waited my whole life to be a mom for the perks of a holiday in my honor...  but after a decade of motherhood, and autism, and special needs, there are moms though that I want to thank and honor, and as I sit here and write this I am choked up because there are women that I have battled this labyrinth of special needs and made and build the path that has helped me be the mom I am today.  There are not enough ways to express my gratitude. 

The moms I am specifically referring to are my fellow Autism and Special Needs Moms. My TACA Tribe. You're so much more than just moms, you are fierce warriors who wear many hats.  I mean being a mom is hard enough, and rewarding (sometimes), and infuriating (sometimes), and for the most part we all as moms do a great job.

But the warrior moms, especially you pioneers that have walked, and trudged in front of me. 
Just thank you.

Thank you for showing me it is possible to get through the worst day of your life, diagnosis day.  Thank you for showing me how to put my big girl pants on and "handle it".
Thank you for being there when I need to cry.
Thank you for making me not feel like I am a lunatic.
Thank you for showing me how to communicate with my kids.
Thank you for showing me how to advocate for my kids.
Thank you for giving me hope.
Thank you for giving me a way to walk.
Thank you for showing me you're not perfect.
Thank you for losing your shit sometimes.
Thank you for making autism manageable.
Thank you for showing me that I don't have to let "them" put my kid in the "limited" box.
Thank you for showing me that there are endless possibilities.
Thank you for showing me the importance of consistency.
Thank you for reminding me setbacks aren't permanent
Thank you for accepting the flawed human I am, and helping me anyway
Thank you for putting me back together when I fall apart.
Thank you for calling me out when I was whining too much.
Thank you for being my instruction manual on this journey.

Despite all the challenges you women go through everyday, you are my rock, my teachers, my friends, my therapists, and every single day I'm grateful that I was put on your path.

I have learned that I had to become a teacher, speech pathologist, occupational therapist,  maid, lawyer, driver, nurse, cook, and trailblazer for helping my kids learn and thrive.

You have taught me to believe that HOPE is always possible, setback don't define my kids, my kids are human and deserve to be treated as such - and it's my job to make sure that the "professionals" do.  You have taught me coffee is life, and sleep is a luxury I will enjoy someday.

When I started this journey, I thought the "professionals" were on our side to help our kids.  I soon found out there is one box that they want to put all of autism in and either ignore it, or blame parents or autism for ANYTHING that may happen to them injury, sickness or behavior wise.  What I soon realized was the only side, or tribe I had were families like ours on a journey with no real map or directions but you were building roads, bridges and byways for the families to come behind you.  There isn't a way to measure this much gratitude.

I can't express enough that you women, moms, chicks like me, wanting the best for our children when most of our families, friends, and loved ones had written our kids off.  You people you moms, made me a mom, a warrior, a lawyer, doctor, teacher, therapist, advocate, insurance adjuster, and made our autism not a scary place, but a place of hope, when we were hopeless.  The lesson and phrase of "families helping families" that is on every shirt I own from "TALK ABOUT CURING AUTISM" @tacanow is the thing in my special needs parenting that is constant.  I can call on anyone of the moms I know from TACA and know I'm going to get off that phone with solution, or at least a direction to solution.  When I call most doctors or professionals I usually get off those calls in a heap of tears.

So to the warriors, thank you, for making me a warrior, thank you for helping me become this mom with all the moving parts that autism requires.  Happy Mothers Day, no not Mothers Day.  HAPPY WARRIOR DAY, you are warriors and I'm proud to be in your tribe.  I honor you and I love you all.

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.

My boys and their HUGE year.

We have one more holiday to go and we can kiss 2014 goodbye, and to tell you the truth since our autism diagnosis 6 years ago, this has by far been the best year and the biggest learning experience and the most growth for the whole family.

The year started out extremely rocky we had horrible tantrums and episodes at school with Franklin and it was so hard because we had him coming off medication and moving toward a more biomedical approach to treat his autism, and it was awful and hard and I wanted to give up almost everyday.  However, we plowed through together and he made amazing strides, and it was a victory.

This was also the year that we were able to give him a voice via an iPad and ProLoQuo2 Go.  We are a work in progress, and everyone at school is not properly trained in it, but we have given the boy a way to communicate with us and it has eliminated a large percentage of his behavior, and it was the biggest dose of gratitude that I could have asked for.  I am moving forward with my education on the device and plan to become a "mommy expert" on the device, via other mommies and classes that I'm finding in our area.

Jackson has started Kindergarten this year and my baby is becoming a big boy and it was hard for mommy to deal with.  I love babies, and part of me has struggled to not "baby" him, and let him grow up and catch up developmentally.  Jackson has made friends, and he has some buddies, and friend that he initiates play with and engages with and I absolutely love all the kids in our lives that we work on our social skills and are building relationships with.

This year after 3 years of therapy and desensitizing them, and working and blood sweat and tears, we conquered THE BEACH.  OMG.  I can't say it enough we can go to the beach, and stay, and no one cries - except me - Happy Tears.

All our work, and all the therapy, and all the sacrifice and the boys are changing, learning, maturing and my believing in them and myself as a parent is making things happen.

My boys have grown and changed and launched so far forward this year, and they work so hard, and mommy found a louder advocate voice, and I feel like we have put them on a path where 2015 is going to KICK ASS.  Our team is fabulous, and I am so happy and anxious to move forward and let this be year the of recovery and improvement.

We were sitting at families house yesterday with all our cousins and friends and I was also forced to look at how different and challenged my kids are.  While everyone was playing on the swings and doing games and things that 5,6, and 7 year olds do.  My 6 year old was locked on some paper cut outs of letters and numbers, and was completely in his own world and wanted nothing to do with the other kiddos.  I saw the difference, I saw his cousins looking at him like he was a little different.  But yet he was HAPPY, and while it hurt me as a mom to see my kids isolating themselves, no matter what I did to try to get them to engage, they were not having it.  Those are my struggles, and my hurts and lack of acceptance of autism.  But even while it hurt me a little, my kids rocked this holiday season and  I couldn't be more grateful.

I got to also see a lot of our autism families kids rocking it,  we saw some amazing things this year in our little OC community, and I'm thankful, and happy and hopeful, and taking all that into 2015 and looking forward to giving autism a run for it's money.

Merry Christmas and Happy New Year

Rebecca

Autism Adult Housing Tsumani

In November I attended the 5^th Autism Speaks Town Hall Meeting on Adult Housing.  I was excited to go and left there feeling anxious, apprehensive, scared, and determined to help solve this tsunami that is about to hit communities all over the country if action isn’t taken soon or more like IMMEDIATELY.

Panelist Fran Solmor made the most personal and powerful statement to me because she actually a parent of a child and adult child with autism.

"I am here tonight because like all of you who are parents, I go to bed every night worrying about where our daughter will live when we are no longer around.  My greatest concern is this: will Sarah have a home and a community to live in?  Right now, the answer is that there are very few options.  Our job is to fix that problem."

I want to fix the problem too, but don't have the slightest clue as to where to begin, and what struck me at this event, was that none of the panelists had a viable plan or solution, and frankly that hurt my stomach, and made me cry.  It feels like diagnosis day all over again, Good Luck, see you in a year and they send you on your way.

Since my kids with autism, are still relatively young – 6 and 8 this month, housing was not on the forefront of my mind.  I’ve still been trying to maneuver my way through the IEP process and Regional Center labyrinth.  So I was frankly caught completely off guard when at this presentation most of the participants were saying there is a lack of housing.  No, not a lack of housing, there is basically for lack of a better word – NOTHING that will be there for my kids if action – serious action isn’t taken now.  That action needs to be taken legislatively, through the faith based communities, and the private sector as well trying to solve this problem.  While there was Senator Correa speaking at the event, I was left completely deflated with his lack of solution, and no words of HOW to make it HAPPEN.  And when I say IT I mean, actually housing come to fruition for the tidal wave of children reaching adulthood with autism that is coming to our state. 

One action item that came out of the meeting was the December 7^th Walk Now of Autism Speaks event at Anaheim Stadium, where Autism Votes will have petitions to sign to start the legislative process going.  There will be at least 5000 people that can sign these petitions and help move the process and get this in front of the legislature who HOPEFULLY will have our kids interests at heart.

I never thought I would say there was anything scarier in my life than my kids being diagnosed with autism, because there is not a “manual” on how to treat autism, so you basically follow “advice” and fly with whatever treatments, therapies, and medical interventions work for your kids. However, this new knowledge of how severely impacted our kids will be if all of us as an autism community don’t ban together and make a difference here, that is the scariest thing ever.  I have not slept a good night since, because I feel like I have to make a difference, and I can’t stop the worry of “What will happen to my kids, when I’m no longer here?”  So the only thing I can do to help stop that worry is take action.  I can not trust that our dysfunctional frozen government is going to be able to deal with this.  I can’t put my kids will being completely in that basket that I frankly don’t trust.  

I have always thought I would be there to take care of my kids, because they NEED me, and one of my kids is so severely impacted by autism, I have just cluelessly thought - "I can never die" - joking but not really joking.  And now I feel that thought is going to haunt me.

As a mommy, I have to now add to my already overwhelming plate of AUTISM to make a solution.  I don’t think the government will ever do anything to care for these kids adequately, so as a community we have to come together and think, plan and do something to make a community for our children and help avoid the tsunami of adults that are about to hit the system.

I am open and looking for any ideas anyone has here. 

Rebecca