WINTER FEST OC

There is still over a week left to visit Winter Fest OC at the Orange County Fairgrounds.  We attended last week, and had a great time with all the activities available to do.  There was Ice Skating, Sledding, Reindeer petting, bounce houses, carnival rides, games, amazing ice sculpting via chain saw, and great entertainment. 

If you're able to get there at 5:30 every night you get fireworks and Christmas Tree Lighting. 

The festival is open daily until January 3rd from 11am - 10pm.  There is a lot to do there, and you can look up the schedule and pricing for Winter Fest OC and buy tickets online.

Winter Fest is proud to honor heroes in the community by offering free admission to nurses, educators, servicemen, law enforcement and firefighters. Every Wednesday is “nurse appreciation day” and nurses will be granted free admission with a valid workplace ID. Every Thursday is “teacher appreciation day” and teachers will be granted free admission with a valid workplace ID. All firefighters, law enforcement personnel, active and retired military will be granted free admission daily through January 3, 2016. All participants are required to show proper ID verifying their profession at the ticket booth to receive admission.

The things we loved were the model trains, the fireworks, the ICE SKATING, with skating assistance was so beyond awesome, and the sledding.  It felt like we were in the middle of a white Christmas smack dab in the middle of Orange County.  The carnival rides are great, but can make it into a very pricey day, there are unlimited wristbands available for sale, and season passes for a pretty reasonable price.

There is a WHOLE week left of winter break, and I know I'll be there a couple more times to burn off the energy of these kids.

As far as special needs and autism, all rides and attractions were accommodating.  It wasn't extremely loud or crowded so I didn't have a need for all my extra autism armory which was awesome,  I would bring ear muffs for firework times and during the chainsaw ice sculpting.  We really enjoyed our time there, and will make at least one more trip before our vacation is over.

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

Stop Failing the Kids

Hun Joon Lee, Hun Joon Lee.  They called him Paul at school.  He was a boy, a man, a person.  He was 19 years old, his parents were preparing to celebrate his 20th birthday and after the Whittier School District failed to do their job they are planning a funeral for their child.  Hun Joon Lee was a wonderful 19 year old boy, who had autism, and was non-verbal.  Much like my child Franklin.  He can not speak up for himself, and did not have the cognition you get himself out of a situation.

You  see what happened that day was the bus driver picked up 3 students and only 2 got on the bus.  Paul was left on the bus, LEFT ON THE BUS, on the hottest day of the Southern California Summer 105 degrees.  He couldn't yell for help, the driver didn't check the bus, the teachers and the aide never let the family know that Paul didn't show up that day.  The bus pulled into school for morning drop off, and then went to the bus yard and Paul was sitting in a small 8 -10 passenger bus, and he died.

He died, someones child died, because a long line of people that are supposed to take responsibility for his care didn't step up and do their jobs.  The driver, the aides, the teacher, they all failed to do their job, and this poor vulnerable man was left to swelter on a hot bus all day and suffer while in fear and pain.

I have been using bus service for 5 years, and have had my share of difficulties.  I have felt shamed by some friends and families for choosing the bus, made to feel inferior because the bus works for us, with 2 special needs kids at 2 schools it is a necessary evil.  But that is a story for another time, we should all support each other as special needs parents.

The most vulnerable, the citizens that rely the most on US, us as a whole to care for them.  They are not LESS because they have impairments that don't make them "normal".  They are not LESS because they can't speak up for themselves. They are not LESS because they require special accommodations to get them to and from places.  They are not LESS, they are people. We need to treat them as PEOPLE, GOOD DECENT PEOPLE.  What has happened to us?

This district and the bus company and the police have given the Lee Family no answers, none as to how they failed their child.  How they let him die on a bus.  Why is that acceptable?  IF this was a neurotypical child that was left on a bus after a field trip to basically cook to death, would people accept NO ANSWERS 5 days later?

My child is this boy, who uses the bus, and can't get out of the restraint system, and I can not get a hold of my emotions where this is involved.  This boy requires people to do their jobs.  My child and many others require many people during the day to DO THEIR JOBS PERFECTLY.  Human and mistakes is not acceptable where a life is involved.  We are now forced to listen to Union Yahoos, defend the driver, and their failed systems, we are forced to have a school district disrespect the life and family of Paul Lee because we have now become and allowed public servants to fall to a disgustingly low standard of work.

I will not allow this kind of disrespect and lack of decency exist where our special needs kids OR your typical children are concerned.  Head should be rolling down the street and fired, arrests should be made, and this kind of thing happens TOO MUCH.  This is not the first time, and sadly it won't be the last we have allowed mediocrity and complacency weave it's way into our education system, and the ones who pay the price our always our kids.  If we won't stand up for our kids and REQUIRE adults and caretakers to do their jobs EVERY SINGLE DAY, and get rid of Unions where our kids are involved and put cameras in the classrooms and on the buses so that when these people who are supposed to be caring for our kids fail, we have some back up.  Parents should be planning birthday parties, not funerals.  The special needs community needs all of you to step up and speak up where our kids can not.  This is so wrong, and my heart is broken.  I can't see our kids failed anymore.

Super Sensational Successful Summer

We did it!  Autism beat the summer.  We nailed it, we worked together as a family, as therapists, as community, and had a few bad moments, but no bad days. 

I am so beyond proud of my kids and how hard they work and how enormously awesome they are.  I remember summers and how I would dread and be anxiety filled about the lack of structure and fear of the unknown and how autism would kick my ass.

This summer was sensational, we had so many opportunities afforded to us.  The kids attended Extended School Year, they were able to participate in Special Camp for Special Kids, Surfers Healing, ASkate, and many many Angel baseball games, Disneyland trips, Knotts Berry Farm and many many many hours in the pool.

We have conquered the major behaviors, we have given Franklin a means to communicate, we have found the things that make the boys happy.  We have found their joy.  And no matter what the joy is, we run with it, and do our best to keep their lives as busy and engaged as possible.

I did not have a lot of sleep, because as I had to keep the boys busy, we were busy.  The husband and I are opening a business, and I 3 half marathons in the next 5 months going on that I need to train for, so go go go has been the mantra here.

Back in the spring my husband purchased a Harley Davidson, and we have found a fun and passion that we haven't had in a long time.  While I don't ride myself, I'm just a passenger, I love to look at the world from the back of the bike and just be close to my man. We have changed "date night" to date days, and take long rides through beautiful parts of our area, and have met some really fascinating people who share our love for Harley Davidson and riding.  So while I took some coercing to get the bike, I'm so glad we did.

With 4 days left of our summer vacation, I'm a little emotional that I have a 1st grader, I feel like I just took that pregnancy test!  I am more confident in my ability as a special needs parent, and have become a good advocate for my kids.  I have resources and wonderful team of parents around me that help me and I'm able to help. 

This has been just an amazing summer, and I'm sorry to see it end, but so ready for the kids to be back in school.  I hope you all have had just as blessed of a time as we have.

I Remember When.....

I was reminded today about those early days in our autism diagnosis.  Man those were possibly the biggest suck fest filled days ever.  Because what you get from the "medical community" is a paper with your autism diagnosis and a prescription for some Occupational Therapy - maybe, and told they'll see you in a year.  That's it, then you're on your own.  You're on your own, with the only resource you have is yourself, and trying to find the Yellow Brick Road to get back to Kansas. 

Every single parent handles that diagnosis differently, husbands, wives, step-parents, grandparents, godparents, guardians.  We all have our own coping mechanisms and they are all different.  There is not a right way or a wrong way, because there is no instruction manual when you have a diagnosis from autism.  Sure you have professionals that lay out a black and white plan for you - but those so called professionals must have not learned that autism is not black and white, there are many many different shades of grey, and not one of the kiddos fit inside a specific box that they built to try to fix the "problem".  I foolishly and wide eyed believed them with 2 years of therapy and early intervention my son would be mainstreamed by Kindergarten - that was the plan for all kids with autism................  that's another heartbreak for another post.

But I remember the heartbreak and the loneliness that was crippling.  I remember feeling like I was losing my son more and more everyday.  I remember grieving and sobbing over the dreams that I had for my kids, I remember feeling like my motherhood was robbed from me, I remember when I saw one of my friends stare at my kid for the first time in shock, I remember not feeling happy for my friends when they shared their babies milestones because I was jealous and sad, I remember not taking phone calls from people because I didn't want to talk and I didn't want to listen, I remember a couple of years of being a prisoner in my house to autism therapy.  I remember being jealous and angry at my husband because he got to go to work and get away from it for 10 hours - he sometimes a lot of times stayed 18 hours.  But what I remember most looking back on it was my fear, I remember the fear, it paralyzed me, literally I couldn't move, I couldn't talk, and I could barely breath.  If you're an autism parent, I know you felt that too.  That's the stuff we're never supposed to utter out loud.

When pre-school started and I actually got to go out of the house and see people other than the 22 year old therapist that came to my house everyday to help my kid make eye contact and stack blocks (they did much more than that).  I arrived at school, and there were moms there.  Mom's like me that had that look on their face, "WTF just happened to my life".  But it was that time in pre-school, when I saw other moms other families, dads, grandparents bringing their kiddos to school, hoping and praying and expecting the best for their kids.  My old friends, didn't understand my sorrows, my worries, my hurt, my grieving, and my immeasurable love for my kid.  But the mommies and daddies I met at drop off and pick up were top notch, they pulled me out of the hole that I was in and brought me back to life.  They put light in my eyes, and hope in my heart.  They gave me a voice and ears - to speak and listen about ANYTHING.

Never thought times like this would happen, friends make it possible

The journey that autism takes you on is a blind one. There is not absolute map, there are not guarantees, but just like in anything in life, find the people who are doing their best to move forward.  There will be all kinds of people you meet on your journey, and that's the point.  There is no reason to do this alone - the number is 1 in 68 kids has autism. There are a lot of us, don't be sad and alone, there is hope, there is help - so many different kinds of help, there are options, many of them. Do not ever give up hope.

I am the mom of a severely autistic child and a mild to moderately impacted child.  Their needs are both significant, but very very different.  There are so many options and paths to take and the professionals while they mean well, they are just not nearly as compassionate, empathetic and none have the foresight to combine treatments and therapies or "think outside the box".  Autism in many many ways has made  me feel like the most inadequate mom because I never know if what I'm doing is good, right, or working or hurting my kids, and it constantly makes me second guess myself.  My other warrior moms pull me out of my paralysis and help me move forward. They understand, when I can't find a babysitter, they understand and cook a meal for me when my son hasn't slept in 6 days, they talk to me on Christmas because one of my kids hadn't pooped in 5 days and he was miserable.   I can't tell you how much other autism families have added to our life.  I don't know where we'd be if we didn't have families helping other families.  Amazing organizations are out there to help, all you have to do is look past your tears and fears.


If you're a new mommy or even had your diagnosis for awhile and are sad and scared or just exhausted and overwhelmed.  We get it, we live it, and you do not have to ever be alone again.  I don't want to be that mom that jumped into the bottle of wine and swam around for a couple of years because I didn't know what to do.  I still don't always know what to do, but there are so many families that have trudged the autism road in front of me, I follow - and I follow and sometimes I fall but if I get on the path and stay on the path, I'm always going forward and I'm never alone. 

To all my autism and special needs parents that I've met, facebooked, instagramed, emailed and see all the time.  Thank you, for being part of our lives you make our lives better everyday. 

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.

The Day My Filter Died

I have had these thoughts wrapped in my head for weeks now, and kept them in because it's a reality that to be a blogger, you have to write about rainbows, puppies, and the perfect afternoon outing with your perfectly coiffed and dressed children, your perfectly designed home, and cooked meal and never ever show the mess in the kitchen ;)


Well you know what? that just isn't real.  I can't fake it anymore.  I love my kids and I love my life, and sometimes our "perfect" outing or vacation is hijacked by autism or some other co-morbid diagnosis that goes along with it.  My kids are rarely tolerated by public places,  my genius kindergartner was kicked out of Kumon because he was reading and scripting the instructions to the teacher repeatedly, and she would not tolerate a non-stepford child.  Even though he could have worked circles around the "neuro-typical" kids in there, the quirks of autism were more than was going to be accepted in Kumon, so we left, and I accepted that woman telling me "he needs therapy before he can come here", "we can't be expected to tolerate his behavior".  Well honey, thanks for telling me something I don't know - no I didn't say that to her, I just took the bullet she shot at me and let it stew for awhile.  Well no more of that.  My kids are amazing, and sometimes  HERE IS WHAT I AM NEVER SUPPOSED TO SAY OUT LOUD.  Sometimes the Neuro Typical kids in the world are a little over-rated, spoiled and nightmarish, but yeah, my kid reading the instructions over and over and needing 10 minutes to adjust to a new environment, yeah, that's the real problem. 

You know what else I'm going to be real about, my fitness journey.  Yes, I lost 80 lbs, yes, I gained 30 back, yes I'm trying to get them back off.   It's hard, it's frigging really really hard, but being fat is miserable, so I push through the hard, and sometimes I fail, and sometimes I stay in bed and not workout, and sometimes I run really really slow.  I disappoint myself, and I shock myself too, with what I'm able to do.  I eat ice cream in the middle of the night out of the container in the garage.  So there, it's out there, it's real, stand up if this is you too.  I will still be running 2 half marathons barely trained for next month, praying I don't die or injure myself too much.

As an autism mom I always feel like I fall horribly short.  I am inconsistent sometimes, I give up too soon on a therapy or a treatment, my follow through sometimes falls short because I frankly am exhausted, physically mentally,  and spiritually.  I do the best I can, and sometimes I feel like in all areas my life that others do it better.  So sometimes I hit it out of the park, and sometimes I strike out, I just need to find the balance.

As a school parent, I fall short, because I'm the "special ed" mom, and the school barely notices our kids.  But I'll tell you where I won't fail your kids, is voicing the truth where their safety and well being our concerned.  While PTA meetings sit mostly empty and most moms expect those moms to do it, you're missing out on having a voice for your kids education. While many were busy making a perfectly orchestrated family photo at Corona Del Mar, the government snuck in something called Common Core, that is untested, unproven, and lower standards than we've ever had.  If you're busy trying to show the world your perfection.  Common Core is invading your perfect kid and going to make him or her a drone that is not university ready.  And while I appreciate the perfect image all over Instagram, show up at a board of education meeting or school board or PTA meeting occasionally so you can see what the intentions are for your kid, and speak up if you don't agree, this Common Core is basically going to ruin a generation.  For a special ed mom that's horrible and something I can't stand for.  My kids can do everything, they are different, they are not less, they aren't the same as a typical child, and need accommodations for that and Common Core is going to take it away, well I have a voice, I am their voice and I will scream this until you all pay attention.

So I apologize if the new "real" isn't the lifestyle of OC you want to see.  I'm just not that perfect picture, I have flaws, and I work them out.  You probably won't see my family on the PR promotions of families at amusement parks, or restaurants, or cool family shows.  We are a real family, and not the picture of perfection that sells the tickets to the places people go.  But if you want to show how to navigate OC with special needs, and quirks and how to manage them with a kid or kids with special needs, I'm your girl.