Poke - Real Mom Dining Adventures

I have to venture all over Orange County for my kids to get speech therapy, and sometimes I can NOT just sit in a waiting room.  So today I ventured out with another parent, way out of my comfort zone, and found a little whole in the wall in Brea - Poke Avenue.  I have had poke before, from a local restaurant and I'm comfortable and like the poke salad, and that was the extent of my poke experience.

As we walked in we were politely greeted by staff, and ordered our bowls.  You have a choice of Poke Burritos, or Bowls.   And you pick your base, white or brown rice, your proteins,  they have a large choice of fish that was very fresh, and we also got to pick the vegetables.  There was a wide variety of sauces to add to your bowl.  I let the staff recommend, after I picked spicy tuna, and salmon. 

They quickly assembled the order and we got to dig in.  It was delish!  Like a little sushi, salad, burst of flavor party in your mouth.  The portion was plenty of food, the rice was cooked to perfection, and I loved the experience.

So if you're in Brea stop by 860 W. Imperial Hwy., Brea.  Parking is easy, and the restaurant is clean and friendly.

Life Lessons of the Year

2016 - Wow, just wow!  You have kicked me, thrown me, elated me, deflated me, and brought joys and sorrow, and fear and a fight, and a gratitude and attitude that has touched every part of me.

So what have a I learned this year.

My kids safety and well being comes first - always, over you and your feelings.

4 Wheels Move the Body, 2 Wheels (especially under a Harley) Move the Soul - I LOVE MY MOTORCYCLE

The staff in Doctors Offices are nice to you if you're nice to them, bring them coffee or treats and your wait is minimal.

Salted Caramel anything cures most strife in my head.

Trust cautiously, not everyone has your best interests at heart.

 Always find a way to be of service.

If you think you might get lost on your motorcycle, stop for gas first.

Expect kindness and if you get less, move on and move away quick.

You are worthy of all good things.

My children are amazing creatures that are to be respected, loved, treated kindly, and that competence and abilities should always be assumed and not doubted.

Anyone that doesn't think ^ that about my children, is kicked off the team.

Being tired won't kill me - but it does make me feel emotions a lot more.

Random acts of kindness are awesome.

Watching only the local news makes you not smart.

I don't know what "bae" is or "on fleek" - and I've managed to survive, and I'm still really cool.

The Miracle of Mercy is the most amazing force on the planet.  We all have gotten it and we all should give it.

A traumatic brain injury doesn't go away overnight and it changes EVERYTHING.

Being a mom and a wife is hard and comparing your life to other's Facebook perfect family is bullshit.  Be the best you can be, and your family will adore you.

 There is still no better anti-depressant than a fantastic sweat!!!

Welcome new experiences

Be Brave.

Stand your Ground.

Standing Alone is better than being knocked down.

I am mediocre at some things, and awesome at somethings and it's okay.

What other people tell me about how I'm not doing right or good is their business and their problem.

Learning how to protect and defend myself with a firearm was an amazing empowering experience.

Getting out of my comfort zone this year opened my mind and my heart and I now look forward to an amazing 2017. 

I plan nothing around Star Wars - it's just a movie. 

Think for yourself.

Sometimes your feelings will be hurt, but it won't kill you - see what you can learn from it.

Standing out is far superior to "fitting in"

Love everything, if it doesn't love you back - it's the loser not you.

There is ALWAYS ALWAYS ALWAYS something to be thankful for.


What life lessons did you learn this year?

The Phone Call

On September 1st, I dropped my kid off at school and was elated, it was the 4th day of the new school year, and I was thrilled to have some time for myself, after a very long summer with my kids who have autism.  I was running the Disneyland Marathon that weekend so I took a quick trip to Anaheim to pick up my race packet.  I was 30 miles from my kids and their school.  I was in the basement of the Disneyland Hotel when I my cell phone rang,  it was my son's aide, very upset, he had been in an accident at school, a file cabinet had fallen down on his head and they were calling an ambulance for
him.

I was nauseous,  I am never that far from my kids, I couldn't get a straight story from anyone on what had happened.  I had my father in law en route to the school, and I had called another parent in the class who we were close with that could get to school before I could to see what had actually happened.

I got a call back from my friend who I asked to go see what happened at school because I was still 30 minutes away.  She called me back hysterical and devastated, because it was her child who caused the accident.  Well actually know it wasn't her child that caused the accident, it was every adult that works in school administration that caused this to happen.   Every arrogant school administrator that thinks they know better than anyone that is a parent.  (I have anger issues where this is involved).

I finally made it to the hospital, the longest ride of my life.  My son was lying on a gurney visually shaken up with a large mark on his forehead.  He is the most vulnerable kid in our school.  He is obviously severely autistic, non verbal, so there is no way for the doctors to assess him.  It's complete horse shit as far as I'm concerned, once you say your kid is non-verbal, and severe, you see the level of care immediately change.  The medical staff thinks they can do the minimal amount of tests and scans etc, "because of his condition there is no way to get an accurate mapping of any cognitive abilities".  It's absolutely maddening.

After 2 nights in ICU and 2 brain CT scans, it was determined that he suffered a grade 2 concussion.  Now I knew very little about the long term effects of concussions and traumatic brain injuries.  I learned that concussion are devastating, life changing, and very serious.  I thought they were things that happened to athletes, not special needs kids you drop off at school.  I thought they happened to adults.  You are more likely to get your 2nd concussion within 6 months of your first one - because once that "egg is cracked" it will take half the bump on the head to do twice the damage. 

In the 3 months since the accident, life has gone wonky.  We have worked so aggressively hard at working on his autism and helping him get out of the deep hole of autism where he was aggressive and miserable most of the time.  We did years of therapies, diets, medications, supplements, treatments, and spent tens of thousands of dollars.  We had even sued the school district because his previous school he was badly mistreated, neglected, and unsafe and was allowed to get out of the building and to the street multiple times.

After 1 year in his new school, he was doing so amazing.  He was starting to actually achieve goals that had been set as a kindergartner - we had no tantrums for almost a year, he was making communication progress that was thrilling to all of us.  He was in a great place and we were full of hope and comforted that he was with people that wanted him to do well, and BELIEVED in him.  It was great. 

We have had may doctor appointments and are trying to manage the concussion, injury, trauma, and autism and I just see the backslide happening, and there is nothing that I can see that we aren't doing.  All of the work that we have done for years has been lost.  We are back to no sleeping, no eating, aggressive, scattered, and he clearly suffers from debilitating headaches, and sensory sensitivities.  So his life that was already 1000 times more challenging than anyone's on his best day is now painfully more so.  I have this child that is not the same child I dropped off at school on September 1st, I cry almost everyday as I see his struggle, and pain and feel so powerless over how to help my child.  I remain steadfast in my resolve to do what is best for him, and get him to a better, healthy more comfortable place.

This has changed our family and me, our circle has gotten smaller, some people have been amazing friends and it's just warmed and renewed my hope in humanity, and some people who I thought were our friends have pretty much given my child the finger, because my concern for my childs safety is considered offensive.  Which everyone is entitled to their opinion - and you know what they say about opinions......

I am thankful that my child wasn't killed or more seriously injured.  I know that those were possibilities of what could have happened.  This really could have been a tragic event.  I am learning from it, I am moving forward with demanding that the schools are safe for all kids, this should NEVER have been able to happen.  The attitude of the administration at our district has been disgusting at best. 

I am praying for solutions, and help that my child recover from this traumatic brain injury and that we get him back to a place where we can start to move forward.  I'm open to anything that you've got. 

Happy Thanksgiving

Rebecca

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.