Tuesday, January 10, 2017

I Just Wanted

11 years ago when I found out I was pregnant with my first child, i just wanted to be a mom.  That was it, a mom, go to parks, drive and SUV, go to soccer games, have play dates, do homework, nurse the flu occassionally, fix wounds, spend time in the ER, and watch in amazement as my kids grew to be adults.

I just wanted to be a mom, but I'm more than that, I'm a special needs mom.  What exactly does that mean?  Well it means, that I get to do mom stuff on steroids in addition to a whole bunch of other jobs that are obnoxious because other professionals won't or don't do their jobs.

I am a doctor, because when you're handed an autism diagnosis you basically get a prescription for some speech therapy, a pat on the ass and told "See you next year".....with absolutely zero guidance or instruction.  Left to my own devices and a tribe of families, I've contributed to the massive improvement of my children.  I have had numerous doctors give me the line that I should just accept this is how it is, and once I did that I'd be happier - yeah, he got fired.  I just wanted to be a mom.

I am a lawyer, I have had to research education law, American's with Disabilities Act laws and statutes, special education, FAPE, IEP, Civil Rights, Restraint and Isolation, Abuse, Neglect, Malpractice, and Special Needs Trusts, because as unfathomable as it is, the professionals rarely want to give you what will be the best for your child, the will put you on a path, without all or any knowledge.  School districts lie, all of them, lie, and lie a lot about what their responsibilities are and aren't when educating special needs children.  I wanted to be a mom, that was all.

I would like nothing more than to be that mom that drops off my kid and goes off to work and know for the most part that my kid is in a classroom where he's getting taught, fed, and play time and a reasonable expectation that he is safe from harm.  All of that is out the window when you're a special needs mom.  Is my kid eloping out of class or the school to the street  and shockingly is the school staff even aware he's gone? Are the services like speech and OT being provided or am I just getting lip service? Is the staff being respectful to him?  Are the other kids being respectful to him?  When your kid is non verbal and can't tell you about his day you have to give people that you don't necessarily trust the benefit of the doubt, and hope for the best. 

Today I got a note in the backpack "F..... hair got pulled, he cried.  His aide comforted him, and he went back to being happy after a while"   ------ That's it.  I don't know how, why, when or for what.  Was there an antecedent?  Was it retaliation?  Was it instigated?  Was he a slow moving victim?  Where was his aide?  I got and get almost a nil amount of information and that is supposed to be acceptable.........No JUST FUCKING NO.  I challenged every and any school teacher, and administrator if their child is in a scuffle at school to take a note like that AND NOT ASK THEIR CHILD ANYTHING ABOUT WHAT HAPPENED.  Those are the shoes I walk in, usually through piles of horse manure.  I just wanted to be a mom.

I was livid receiving this note, because now I have to be an investigator.  My investigative skills over the last few years are now to CIA level.  I have myself have uncovered abuse, neglect and violation of my child's rights and that his IEP was out of compliance for YEARS under the assumption of the school district that since my kid can't talk, they don't have to give him speech, and he'd never tell me that he went to speech, OT, or PT.  They believe I'll never find out, they believe parents don't speak to each other.  I have actually had a principal with a set of balls to call me and tell me, I was not allowed to ask the staff how my child's day was............  Yup, I was not allowed to ask staff how his day was, after you wrap your head around that, know I continued to ask how his day was because I am the parent, the captain, the team leader, not some higher educated snob that I wasn't worthy of information on my son.  See I just wanted to be a mom, that was it.

I have had to be a scientist, and concoct foods that my kid will eat, and make them look, feel, smell like something that he would eat, but shouldn't eat.  I have full on Heisenburged myself and made some amazing concoctions to expand the repertoire of 2 foods that my child will tolerate.  I pain, worry, freak out, give up and try that my severely underweight child will begin to fail to thrive, and that my overweight special needs child will have health problems because I am failing at finding them items they will eat.  I just wanted to be a mom, it would have been so much easier to be a mom.

I am hazardous waste clean up.  Poop smearing - that's all.  Still happens.  Gross, enough over it.  I just wanted to be a mom.

I am insurance manipulator - codes, ICD-10, working the system to get my children the help they need without making us homeless.  I just wanted to be a mom, that was all a mom.

NASCAR driver to 14 different appointments a week, in Southern California traffic - just sucks.  I just wanted to be a mom.

Advocate, If I can't, or you tell me I can't - know I will get it done, it sometimes hurts me, it sometimes hurts you - but it will always be doing right for my kids.  I just wanted to be a mom.

Psychologist and shoulder to cry on - other moms with kids with special needs  we are each others support, because slowly most of our family and friends back out of our lives and all we have is each other.  All I wanted was to be a mom.

Team Captain - my kids have teams of doctors, therapist, teachers, aides, Speech Pathologists, Occupational Therapists, ABA, school psychologists and much to the chagrin of the school districts I am the captain.  It took me awhile to get my bearings, but once I realized a team member wasn't up to the task so doing what was right or the way it worked for my kids - they got cut.  I cut team members much quicker now I use my gut more.  And I praise and adore, and encourage the good team we have and try to keep us on a winning streak.  Being just a mom would have been so much easier and less exhausting.

And then I'm a mom - I have these 2 boys that rely on me for their health, education, welfare and care and I LOVE EVERY PART OF IT.  Autism is heartbreaking, and hard, and annoying AF, and exhausting, but my children are amazing.  I love the cuddles, the homework, seeing them thrive, helping them get up when the fall, helping them through rough patches, making the world a better place for them.

While I'm sad and frustrated right now at where we are with a situation at school, my kids give me purpose, and guide me and I love being their mom.  I wish I just got to be a mom, every other hat I have to wear, I don't love those jobs
like I love being a mom, but for my kids I'll wear any hat necessary, but I just wanted to be a mom, and I am a mom - a mom with amazing kids.





Tuesday, January 3, 2017

You have 20 minutes.

The caretaker mom, dad, grandparent, the special needs parent, the single mom, the parents that have to do 1000 times more than the mom of typical children or grandchildren.  Hear this, if this is all you read, all week, you need to read this.

You matter, you are important, your health, your mind, your body, all matter.  They matter most to the person or people you have to care for.  I know that it seems like that is an incredibly challenging concept to wrap our brains around.  As caretakers to our family, in addition to being parents we have conditioned our minds to put our "special" person as a priority and that our own needs fall last, even lower than last a lot of the time. 

Well I'm calling us all out.  We need to wake up, we need to step up, we need to practice some self care and self love.  I'm not a therapist, and I'm not a doctor, and I'm totally not into psychobabble at all.  However, since Carrie Fisher died last week and her mom died the next day it has consumed my mind.  That us the caretakers of those with special needs really have that one wish "I want my kids to have a happy life, and that I live just 1 day longer".  It's true, my biggest fear and the thing that keeps me up at night is, who will care for my kids when I'm gone?  Carrie Fisher had many mental health, and addiction issues, and I'm sure her mom was a bundle of nerves for 60 years, because that is what moms do.  But how do we outlive our children if we take crap care of ourselves?  We can't always be put at the bottom of the list.  We put the needs of our family and those with special needs so far above our own, it's actually stunning that we are even able to care for those that need the care. 

This is my 6th year being cancer free, and that put a shot in my ass to take care of myself.  Because I really have no one that will care for my children if something were to happen to me and it makes me cry every single time I think about it.  I made a commitment to myself 5 years ago to lose weight, and eat healthy blah, blah blah....  and I did, I lost weight, I became a runner, and drank too much to cope, and had to get sober, and I gained some weight back, and I fall of the exercise wagon, and I stress eat, and I am far from perfect.  But you see, I'm real, and I fall, and I get back up and I keep getting up until I succeed.  I don't set goals, I just try to do good for myself and everyone in my family one day at a time. 

If you're a care taker, parent, grandparent, foster parent, mom, dad, aunt, uncle, you matter, you need to care for you.  Don't add something to your list that overwhelms you, because we are so easily overwhelmed because we all have the weight of the world already on our very narrow shoulders.  But make tiny changes, give up one crap thing for one good thing, and then another, and another, and another.  It's the tiny things we do for ourselves, that will end up being big things, that make us better moms, and caretakers.  When we feel better, we do better, we help more, we conquer more, we feel happy (which is undeniably challenging in  most of our cases).  You can do this, you deserve to feel good, you deserve a smile, a laugh, and good in your life.  Find something that you can handle and do it for 20 minutes, sweat for 20 minutes.  I didn't have 5 dollars to put together years ago, so I couldn't do any of the fancy for sale exercising that everyone was hocking and telling you it's the only way to get healthy.  Well HORSE MANURE, you can sweat in your house, you can walk around your block.  I think I started pushing my kids in their stroller and pushed them about 1000 miles getting my 20 minutes a day in. 

Slow and steady changes, and little tiny progress is good, moving forward is good. Keeping yourself up on this list is not a bad thing, everyone will survive if you take 20 minutes for yourself.  I swear to God, they will.  Your health matters to your loved ones, it really really does over everything else, because you can't care for others if you can't care for yourself, there will be a day where your body says NO.  My kids are just getting bigger and stronger, and faster, I need to be able to keep up.  I need to be able to be healthy. 

My pair of running shoes and weights has been the best therapy I could have every asked for.  Exercising sucks, seriously, I don't know anyone that loves it, but the after, the feeling after is what you will fall in love with, the accomplishment, the endorphins, the strength, the wonder "holy crap I didn't think my body could do that".  That's the awesome, that's where your change will happen, because when you change your mind, everything else will fall into place.

Just try it, do you have anything to lose?  The crumbs on the floor will be there after your 20 minutes, the paperwork will still be there, the cooking will still be there.  You have 20 minutes.  20 minutes a day will change your mind, your body and your spirit.  Your family will notice, you will notice, and who doesn't just want to feel better?  I promise this to you. 

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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