Friday, December 23, 2016

A Very Special Merry Christmas to the Autism Mom's Everywhere

Merry Christmas to you moms!  People will say it to you this year at your friend and family gatherings.  You won't hear it, you'll possibly acknowlege it, you will be more concerned making sure your child with autism is behaving socially appropriate, or not undressing, or smashing ornaments on a tree, or going into someones room and getting in their bed, or licking all the cookies on a dessert table, or just freaking out because they are on sensory overload because you're on your 5th day of no structure because of school break, and more than likely we showed up having to use dry shampoo and took a hooker bath because we couldn't get a minute to ourselves to actually get a full shower and blow dry in.

The holidays and the weeks before and after bring a lot of strife for us mom's.  I personally used to always love Christmas, and I still do, but I dread the holidays with autism.  I'm going to say out loud here something that I think most of us think but don't dare express out loud.  I don't want to go to anyone's house, it fucking sucks.  My kids are overwhelmed, they are ignored, starred at, or expected to pull it together and act "regular" for a little while.  Rarely if ever do concessions get made for them,  people are loud, music is loud, houses are hot, clothes are expected to be perfect when my kids would rather be in sweat pants and a tshirt.  Kids don't play with them, and when my kids try to play with them the "typical" kids usually a cousin walk away, stare, and whisper about them. I have to pack food, clothes, ipads, and bring half of their possessions and creature comforts so I may be able to inhale a semi warm meal (who am I kidding, but I can dream right?)  We bring fully charged Ipads, whereever we go and try to make my kids as comfortable as possible. 

While we try to engineer a socially acceptable appearance in public and make my kids play or participate, they are square pegs trying to fit into a round hole that I didn't get to help carve out.  (Rarely, has anyone asked my opinion of what my kids need) So as we arrive at our relatives homes with our kids meal packed because of a special or limited diet, and listen to everyone "Oh my son was a picky eater, but he ate when he got hungry",  or "you really spoil them.", or "you're not even going to make them try the food."  We smile politely and cry inside.  OMG, I would love to just show up and know my kids would eat the mashed potatoes that you slaved over, and not have to bring half of the contents of our house to keep my kids regulated. Do you know how much easier it would make my life? No they don't they don't know, they don't get it, and they won't and it's cool, I didn't get it either until I was thrown into this labyrinth of autism with no guide.

No one knows how easy it would make your life at the holidays, because everyone is so damned stressed out trying to make it perfect for everyone.  So don't feel alone, the beautiful people are just trying to keep it beautiful and we're trying to keep our "real" from destroying their hopes of a beautiful holiday.  We try to coexist peacefully, and sometimes it works and sometimes we are leaving in the 2nd care we've brought to a gathering because autism had different plans than listening to our overly shrill family.  So some of us spend our holidays home alone with the children we love to the moon and back when all our family is celebrating and having a great time.  Sometimes we cry about it, sometimes we're relieved to get away from some annoying people.  It's all good, it's really just one day.  I

Know that there are a lot of us feeling the same way, doing the same thing.  A friend asked my asked my kid what he wanted for Christmas and he said "paper".  Yup paper.  My friend tried desperately not to look at him like he had 2 heads, and I just had to tell her, it's pretty awesome, I'm not running around like a fool trying to find and over rated over priced Hatchimal that will be broken and forgotten about in 3 days.  Paper and Pillows, that is what my kids want and love for Christmas, it is what it is.  no it's not the picture that the beautiful people try and sell us.    But the smile on my kids face when he opens a ream of paper. I'll take every single day of the week. 

My kid really really wants the Nintendo Classic, and Nintendo is such a jacked up company they make like 50 units of the thing before Christmas time, and some jackholes go and buy all the 60 dollar toy and try to sell them for $300 on ebay.  I don't play that game, and make up certificates that it'll be delivered later. So we all have our struggles. 

So while this season brings and overwhelming trough of emotions good and bad, know you're not alone, your kids aren't alone, and if they want and enjoy the bubble wrap that came in box rather than the gift, the world will not stop rotating on it's axis.  Do what you can do, do what your kids can do, make that round hole for yourself, don't make this ONE DAY defining for what you or your kid are and aren't capable of.  Try to make the day as good as you can for everyone, including yourself.  We moms deserve a smile to have one, we do.  Watching my kid open paper is my smile, sometimes leaving early with my other son whose autism is more severe, and the kind no one understands, is my smile, sometimes it brings me tears.  But it's just one day.  I've come to learn that the family and friends that care about my family and my kids come over on a regular day and don't care that my kid is comfortable in one sock and will only wear sweat pants and has to have all the lights off in the house.  Those are the "Christmas Days" that I will take over the manufactured stressful nightmare that the actual holiday can be.

Be kind to yourselves, don't put undue expectations on yourself, your family or your kids, it's just one day.  And you know what?  This year, my children have stepped up and shocked and surprised me after years of many many lonely tears on holidays.  So Merry Christmas,  feel the hug I'm giving you.  Remember it's just a day, and don't let it get you down.

Tuesday, December 20, 2016

Knott's Berry Farm and Autism

Knott's, we've been going for years, it was and has been fantastic therapy for my boys.  They learned how to stay with me, deal with crowds, waiting, and some social skills.   See my boys are thrill seekers, and like the caliber of roller coaster available at Knott's Berry Farm (mom not so much in love with that part).  So I sacrifice my nerves and suck it up and get on rides that scare me from seeing them from the freeway.

So if you're looking for a gift to give a family or child with autism that you may know.  I would suggest a Knott's Berry Farm Season Pass.  Why a season pass you ask?  Well they're affordable, $90 for the entire year, with no black out dates.  They have light crowds a lot of the time that make the park not the sensory nightmare some other places can be.  It's a great way to get the families out and participating in the community.  Knott's has stepped up their Autism game even since we have had passes the last 4 years.  The disability pass lets you plan your day, and they give you boarding pass times to enter rides at the exit, which makes the whole experience possible for us.  However, my children have learned to wait at Knott's and have patience, we can tolerate a 15- 20 minute line if a ride is highly preferred. 

There are usually great musical performances, there are a lot of quiet places to chill or take a sensory break if need be.  They have a gluten free menu in many of their restaurant facilities within the park. They're famous for their Fried Chicken and Boysenberry and since our diet is extremely limited and picky - the chicken strips at Knott's are second to none and a favorite in our family.  So it meets all my criteria ;)

Knott's Berry Farm also offers Kid Track, which is a child identification in the God forbidden instance you get separated from you child, it will help them get back to you immediately. 

I have found Knott's to be a life skills therapy for my two boys with autism, that has really helped them move forward and onto bigger things, that I never expected.  It has rides and attractions that are appropriate for all ages, and that's what I love.   This was their foundation, and stepping stones, that gave them the ability to go to the moves, to Sporting events, to small community concerts, so many doors it opened up for them.  Was it easy, absolutely not?  It was a place that made a lot of the success that they have now possible.  For that I will always be grateful. 

We started in Camp Snoopy years ago, and have grown up in that park, to now everyone being tall enough for Silver Bullet.  Those were the toughest years of autism,  the staff at Knott's was always helpful and offered their suggestions that would make our experience easier, and even went above and beyond in some instances. 

I can't speak enough about Knott's we are there about once a month throughout the year, so we hit up all their different seasons.  The fall from Camp Spooky and the Haunt, and winter for Merry Farm are our favorites, but Easter Time is beautiful in the park and Camp Snoopy has a great Easter Egg hunt.

Oh and I almost forgot the dining pass.  $99 added to your season pass and you can eat lunch and dinner at the park every visit.  If you're aware of theme park food, it's expensive, this is the deal of the century!

So if you're stumped on what to get a family or a child you know, this would be a gift of ability, growth, and life skills that every kid especially those on the Autism Spectrum could use.




Thursday, December 15, 2016

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.


Thursday, December 8, 2016

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?







Monday, November 21, 2016

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


 
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