Wednesday, January 1, 2020

The growing pains decade to the Roaring 20's

My life is good, I am grateful, and I am happy.  Sitting here sick, and watching social media, and reading every one's end of decade lists, and what they've been through and where they are going, and it just got me to thinking, because I live by the seat of my pants and am most of the time I'm just trying to catch my breath and fold some laundry while driving, working, raising children, being married and keeping some modicum of order.  What really happened in this decade?  Holy crap, it was good, it was bad, and some stuff was really ugly.

2000's - The Decade I became a real Grown Up, met/married the husband, changed careers, bought houses, sold houses, had 2 babies, lost a parent, survived a shitty economy.

The 2010's while they started out with a bam, we had a new 1 year old and a 3 year old recently diagnosed with autism, he was just starting pre-school, my husband had a great job.  Things were not ideal, but we were managing, and making headway and grieving what was a fairly seriously life changing medical diagnosis for our first born.  But starting in 2010 we had a snowball effect of great and devastating circumstances that would take any sane person for a loop.

In 2010 we were adjusting to autism, and the therapies that come with it, when I was diagnosed with cancer.  6 months of surgeries, I was cancer free and rebuilt.  My first TACA meeting.

2011- Our 2nd child was diagnosed with autism, the crushing blow took away my breath and faith.  I started my blog.

2012 - I took my health and sanity back and tried to heal, met some other autism moms and started running.  It did something for me, it helped heal my heart, clear my head, and with every step that hit the pavement I released some heartache, and gained some strength. Autism started to not sleep, probably the most brutal time. Lost 80 lbs.

2013 - I ran my first half marathon, I ran my 2nd half marathon, I accepted what autism was in our lives, and started working on ways to help my kids have better lives than the crap diagnosis and pathetic life the system sets them up for.  We got Disneyland Annual Passes, and I loved it, it put my kids out in the real world, and forced them to grow.  My first TACA Conference

2014 - The Sleepless Years - Autism Slept - Rarely, it was brutal.  The behavior years, my son was hurting, it was palpable.  The tears flowed freely, his behavior was off the charts, and the school district, doctors, and family were helpless.  The first time I sued the school district, and won and started our AAC Journey.

2015 - The Year Harley Davidson entered our life.  The year my kids finally started to love the beach, our first big family road trip, Disneyland, Knotts Berry Farm, new school for one kid, and many many cool things for Jackson.  This was a good year, this was the year I had the most Autism hope since diagnosis. Jackson was in a school play.

2016 - Road Trips, Beach Days, Lake Days, Fun, Family, and the day that changed our lives.  A traumatic brain injury, someone let my son get hurt, some people didn't care he got hurt.  His recovery was torturous, painful, and it was a devastating setback for him.  "Friends" walked away from us, because they're of the opinion "no voice no value" and because my son can't physically talk, they really didn't think he deserved dignity, safety or respect. last time I ran a half marathon.  I got my motorcycle license and my own Harley Davidson. The adventure began.

2017 - AMAZING NEW SCHOOL for Franklin, Jackson found things he loved, music, dance, sports, going to Angel games, USC games, road trips, beach days, lake days, Disney days.  With the horrible effects of post concussion syndrome took a toll on our family and my sweet boy Franklin.  Unreal new Harley Davidson adventures, first vacation without the kids.  Menopause. Laid off of a job.

2018 - Franklin's health improved significantly, and we started to see some strides from his horrible setback.  Jackson was in a school play, played baseball, loved to stay with grandparents overnight.  Fantastic road adventures on the Harley through Utah and all the beauty of the National Parks. Laid off of a job.

2019 -  Wow, kids in puberty, schools, health, things for my kids are great.  We gave up our Disney passes this year, it was sad, but we were grateful for all the things Disney provided to our kids growth. Working always working, keeping our financial heads above water, loving our journeys that Harley Davidson provides us.  Grateful always grateful I'm a Real Mom and not a Real Housewife.  Lost 2 good friends to Cancer, and was brought back into

This decade was good, bad and ugly.  There are things I want to bring back for the "Roaring 20's", and things I want to let go of, dreams I have for myself, my kids and our family.  I think the blog is coming back more frequent and regular, running is coming back, hopefully hot flashes will go away. 

So Bring it on 2020.  We're ready for you. :)

Tuesday, October 22, 2019

Life Lessons of the Week

Autism is hard.  It is always going to be hard.  But the hard gets different.

Your journey is the destination.  Always savor where you are at.

Celebrate the small wins, they are just as important as big wins.
Keep your circus tent small.

Vaccine Injury is Real.  Be kind to those families whose kids are injured.

California is a HOT Mess, but the weather is nice, that’s becoming not enough though.

When I exercise I’m so much better in my head, the rest is a bonus.

Nothing about the Real Housewives is real.

Your opinion of you is all that’s important.

Hugs from friends you rarely see are amazing!

Happiness is a choice

Men can not have babies. Biologically impossible.

Sunday, March 17, 2019

They Said He was Unteachable

I relive that day in our IEP meeting with my son's "team", as a 1st grader I was told by several, he was unteachable, unengaged, and unwilling to cooperate, and I should consider taking him out of school.  He was 6/7 years old then, and I was riddled with anger and heartbreak.  These were EDUCATORS, and they were giving up on a little boy with autism, because he couldn't talk.  Because he didn't fit in the box of the neurotypical child that they determined worthy, nor did he fit in the much smaller box of autism that they deem acceptable to teach in their ONE way that they offer.

You suffer these blows from educators, medical professionals, and many in the community often as a parent to children with special needs, especially parent of children that have no physical voice or functional communication.  They expect you to accept their mediocrity, and one way style of teaching.  They expect you to take their lies and laziness as "we're doing everything we can".   They also expect you to accept them not treating your child with dignity and respect because they have no voice, to tell you that the professionals, teacher and therapists are killing their souls and not presuming competence.

I am going to say this that there are A LOT of AMAZING SPECIAL EDUCATION PROFESSIONALS, and we have been honored to have them.  I am not ignorant to that fact at all.  We have been blessed with some teachers that have brought my son back from the darkest place, after years of being warehoused, marginalized, neglected to the point of being put in the ICU.  

I have been tired of the overplayed excuses from teachers and therapists with all the things he CAN'T do.  They never gave him a chance, offering him a whole 15 minutes of speech, including walking time.  But I digress.

As a mom, you have the PhD on your kid.  You do.  I do, I barely made it out of high school, but NO ONE knows my kids better than me, no one knows when he crinkles his nose what is about to come, when he cocks his head to the left he's happy.  He hates the back of his head being touched, but he loves his forehead being rubbed.  You just know your kid, because they are a part of you.  It did take me awhile to get my Autism Mom Wings and fly with them, but once I did, the world became so much more open and available to him.  

I have followed moms who have walked this treacherous, exhausting, exhilarating, and overwhelming path before me, and if I see something working for their child, I bother them, I ask them, "what did you do?", "can you help me?", "where can I find that?"  "What is my next step?"  The kids, the kids have always been my evidence, and all I need really to be willing to try new supplements, diets, methods, treatments.  If it's working on kids in my circle and I can do some research and see it's working for others, we have nothing to lose to try something.

We have embarked on this new journey for about a year, and I finally feel like I have my wings and I can sort of fly solo with it.  We are doing a program called Rapid Prompting Method which is used to teach academics, and communication is also taught in the process. Despite behaviors, the academic focus of every RPM lesson is designed to activate the reasoning part of the brain so that the student becomes distracted by and engaged in learning.
RPM is distinct from other methods as it is based upon how the brain works. The aim is to bring the student to maximum learning through the open learning channel and to elicit the best (not simply to test) out of the child to enable maximum output in that given time. As a student's cognitive and motor proficiency increases, the sophistication of a student's response also improves.
RPM uses prompting to initiate a student's independent response, without physical support. In addition to teaching letter-chart pointing, RPM also utilizes stencils and other drawing exercises to lead to independent handwriting.

In a nutshell, I just have to say to all of those at those IEP meetings who said, he was not teachable -  YOU WASTED A CRAP TON OF MONEY ON YOUR DEGREES.  YOU ARE WRONG, and YOU OWE HIM AN APOLOGY!   This kid has chops, he knows stuff, he has absorbed more than you can even fathom.  

For example for fun tonight we did a few lessons - here are some of the questions, and his answers.

What part of the body does a rattle snake shake to make noise?  -  a T-A-I-L (so he knows the answer and how to spell it)

If you are watching a sunset, are you facing East, West, North or South?  W-E-S-T  

Name the Tallest Mountain on Earth - Everest or Whitney?  E-V-E-R-E-S-T 

How Many Quarters make $.75 -   3

He knows stuff, a lot of stuff, different stuff, how to spell, he has opinions, I was told his functional communication would be just communicating his needs for food and toys.  Boy did they underestimate him.

UNTEACHABLE - that's what they said.   Well this journey we are on is now about to soar like a rocket ship.  I hope you follow along in our journey.  This is the part where I get to say It's Not Game Over because of Autism, It's GAME ON!!!  

Tuesday, February 26, 2019

I went "ALL IN" on CBD

I am a mom of 2 boys with Autism and one of them on the more impacted side of the spectrum.  Because of a mostly ignorant, unhelpful and inadequate healthcare system and medical professionals, I am as many autism families are, constantly on the research path to help our kids with other co-morbid diagnosis they suffer from.  Because "that's just autism" isn't an acceptable answer when your kid is suffering with:

  • constant crying
  • constipation
  • rashes
  • insomnia
  • ticks
  • vomiting
  • anxiety
  • inflammation
  • aggression
  • seizures
There are doctors that are willing to help kids with autism they are few and far between.  Medical treatment for kids with autism is grossly inadequate and borders on malpractice for the most part.

My 12 year old is more severe, non verbal, and has suffered from many other symptoms that multiple doctors have never wanted to get to the bottom of, but they basically wanted to medicate him to the point of him being a "thorazine shuffle" kind of kid, to keep him and me quiet and out of the doctors office.  When he was 5 we were in a very bad way, his behavior that was mostly self injurious continued to get bad to the point where I feared for his safety constantly, and the only help that I was offered was anti-psychotics from Neurologists and Psychiatrists.  My gut told me this wasn't right, but my physical exhaustion and emotional state won, and we elected to put him on Respirodol.  What a nightmare.  The relief it brought him, was not near the side effects, and the more I did research the more I realized I did the wrong thing.  This was no solution for him.


I had seen a segment on 60 minutes about Charlotte's Web Hemp CBD oil and the miracles it was working for people with Epilepsy, Apraxia, Autism and Cancer.  So I ordered some, this was before it was legal in California, so I could only acquire it from the grower in Colorado, and it was pricey.  But I always will try anything once.  While the results of this product I tried for about 6 months were not what others got, there was still some benefit to it.  The best way I can describe it is that it took some of the "Steam" out of my son.  He wasn't tense, his vocal stereotypy was decreased, his screaming decreased, his pacing decreased.  For us it did not bring language, sleep, or cure his autism.  I was a little disappointed and felt I was sold some really expensive snake oil, but was happy for those who it brought a complete benefit for.I didn't continue this brand, because the benefit vs. expense wasn't working for us.

In late 2016 my son was involved in an accident at school and suffered a traumatic brain injury after a file cabinet fell on him (don't even ask - but sheer stupidity, selfishness and a lack of common sense were the cause).   But moving on, this injury caused me as a mom to dig deep, I was hurt, scared, angry, and disappointed in EVERYONE.  This was the period of time where we learned first hand how absolutely neglectful and incompetent medical personnel were. This was were we experienced people in medical, legal, education and our community that the attitude was that because he had no voice, he had autism, that his life had no significant value.  That was the hardest biggest and most sour pill I have ever had to swallow in my life.  Time heals all wounds, but leaves scars for sure.

The symptoms and all that come along with a grade 2 concussion, are no joke, and don't go away with a pill or a visit to the doctor and a vaccination.  My son suffered a loss of skills - life skills that we had acquired over the years, loss of potty training at 9 years old, loss of the ability to make full sentences on his communication device, migraines, vagus nerve damage, insomnia, PTSD, anxiety and self injurious behavior trying to alleviate his own headaches.   He spent the better part of 2 years in his room in the dark mostly crying. The Concussion Clinic at Children's Hospital Orange County denied him as a patient because of his autism (after waiting 7 months for an appointment) - their reason was they couldn't get an accurate assessment on him because he couldn't talk.  It was complete horse shit, they just chose to discriminate on a case that would cause them to actually have to do work other than prescribe a pain pill.

In the midst of this absolute shit storm of symptoms Post Concussion Syndrome was ruining us, it was painful, stressful, and we were utterly on an island alone.  One day we were at Disneyland with another family, and my son lost his mind, it was anxiety, panic attack, pain - and you just don't want that to happen at Disneyland for the sheer crowd factor, you can't get out, you can't get help, and every loser this side of the Mississippi River is staring at you, without offering a single ounce of help.  Our friends who have a son who was going through a medical issue offered us some CBD Tincture oil to help.  40 minutes after taking the oil, it brought relief, relief, visible change in his attitude, body, mind and soul.  Not like what I had seen before, where it just sort of took the edge off, this was actual relief.

I was given a huge shot of hope, and the rejuvenated belief that there was something that would relieve his pain, anxiety, and trauma.  So after I picked myself up, brushed myself off, I found a new resolve and gratitude and the energy and stamina to help my son, rather than just survive his injury, pain, and trauma.  We had a little bottle of oil, and it changed everything.  EVERYTHING.  The brand we had used was Papa & Barkley 1:30 Tincture Oil - It is 30 parts CBD oil, and 1 part THC.  This oil seemed to have the kick that we needed neurologically, physically, and emotionally to bring a kind of comfort to him that we had never seen. 

In the year we have been using CBD on our son, he has been relieved of most pain, the migraines were cut in half almost immediately, anxiety is much lower, gut issues are being alleviated, and sleep OMG SLEEP, finally after years.  And all of this with no side effects, he doesn't get high, his blood work is super clean, no pre-diabetes like the Respirdol had brought on, no sweats, no dry mouth, none of the other crap that heavy duty pain killers and anti-psychotics bring with them.  The only think mainstream medicine offered was a prescription pad and medications that were completely inadequate and inappropriate for a child suffering.  The pharmaceuticals left him drooling, constipated, and quiet, which then doctors would say, "well this is all we can do, it is severe autism, you need to accept this Mrs. Goddard" BULLSHIT - would anyone accept that for their kid?  Why was I expected to because he couldn't talk?  Papa & Barkley gave my son a mostly pain free life, free from anxiety (for the most part), it allows him to sleep through the night about 90% of the time.   When I added Chiropractic care into his repertoire with the CBD we had the game changer.  The adjustments from Gravity Spinal Chiropractic and the care from Dr. VanSeters was sincere, frequent, and good.  It added to my childs recovery, and brought comfort, contentment and extrication from the grips of Post Concussion Syndrome and some of the more severe aspects of Autism.

My gratitude exists on many levels for this discovery, because I think when I did find it, I was just days away from completely giving up on
him, and accepting that his life was more screwed and sad than it was with just an autism diagnosis.  This is just our experience, this is in no way intended as a medical recommendation for you.  This is our experience, strength and hope for families with Autism, who have basically been locked out of good care, because of Autism.  This helped us, it brought my son comfort, it alleviated his injury, and cracked the shell of autism, where we can and are able to bring further recovery and he can come out of the dark.  Thank you Dr. Brandon, and thank you Papa & Barkley, and thank you Mrs. Lopez for sharing the oil with us on that fateful day at the Happiest Place on Earth.

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Monday, February 11, 2019

Life Lessons of the Week

Lessons are good, sometimes they're painful, but they bring growth, they sometimes bring tears, but the hurt heals, the bad becomes good or great, and the cycle of life continues.

1) People that hurt or desert you when you were down, they were never ever your people.

2) Mean Girls sadly didn't end in high school

3) Time doesn't always heal all wounds, but it opens your eyes which brings the healing

4)The Instant Pot is the greatest invention of this century

5) A 4th grade boy and his first crush is terrifying AF to his mom

6) The Gas Light in my car doesn't scare me

7) My parents are awesome

8) Save your money

9) Make Wise Spending choices

10) Read More Books

11) Walk away from anything you can't change

12) Pray More

13) Ride a Harley Davidson more often (it will change your life)

14) Hydrate Hydrate Hydrate

Monday, October 8, 2018

Stumped and Sad

That Autism.  My God, there are just some days, I can't get past what it has robbed my children of.  It's robbed them of being caring.  It's robbed them of compassion, it's robbed them of empathy, it's robbed them of being a part of community, because autism makes them self-centered.  To other children neuro typical children this makes them look like jerks and not good friends, so the isolation continues.    We have been in social skills for years, and they have come a long long way from where they were, and I do not forget that.  But there is an element missing, and it's caring.

My 9 year old, loves to be around people, loves to be the center of attention.  But that's just it, he wants to be the center and if you're not catering to him and his obsession, the amount of poops he could give about what your kid or you have to say is zero.  Well that's not relationship building, and kids don't like it.  Even other kids with autism don't like that, because the want to be the center of their own universe too,  AND I GET IT. 

I don't know how to teach that.  I can teach potty training to an 11 year old, I can feed a kid who will only eat 2 things, I can calm a tantrum down, I can not go to the bathroom for 2 hours because I'm trying to teach my son not to bang his head on the wall, I can teach him how to put on socks and shoes, I can teach him how to catch a ball, I can teach him math, I can teach him to ride a bike, flip on a trampoline, swim, body surf, I can teach him so many things, but I can't teach him how to care -  care about himself, me, his friends, his life.  The indifference is infuriating and frustrating, and confusing and my heart breaks for them.  Because you see as they grow up, their typical peers don't like that crap, they want to feel like they are valued in a relationship, and THEY SHOULD BE.

I guess I'm asking, because I don't know how to do it.  I'm not the perfect mom, I am an autism mom, and I like most of us in Autismville, have had to learn how to be a teacher, lawyer, cook, scientist, OT, PT, Speech Pathologist, Psychologist, Mario Kart Master, Ipad Repair extraordinaire, but I don't know how to teach him to care.  Yeah we can do that ABA train him like a dog, to ask 2 or 3 exchanges of questions, but when we aren't there to prompt the shit out of that, what happens?  Those are the questions that keep me up all night.

How do I...........(FILL IN THE BLANK)?  How do I make him care?  What am I missing?  Am I the Only One? What Actually Happens When I'm Not There? 

My heart hurt all day today, and I think that's why.

Tuesday, September 25, 2018

I did it! I ran, I actually ran

My FIRST Half Marathon 2012
I remember when I started running 8 years ago, and it was painful, and it took my time to get my wind up, my stamina, my stride well, and it took awhile before I actually felt like a runner and I ran some races.  I got through the awkward, the painful, and made myself an athlete at 42, after kids and cancer and 2 autism diagnosis.  Running I am pretty much saved my sanity.

2 years ago after my son was injured at school, I went dark, I stopped, just stopped.  I ran a half marathon 2 days after his injury and haven't run since.

In these 2 years, I gained weight, went a little crazy, had a little PTSD, and seriously injured kid to care for, and a lot of tears to shed.

Well we have all turned the corner, he is finally on a road to a better place, I am ready to get out of this sick mind, and chubby body and get my MOJO and my happy back. 

As an autism mom, I am the first to neglect myself, and care for everyone else and what they need and want until I'm exhausted enough to not do anything for myself.  Well I'm changing that today.  I realized that caring for my kids, especially as they get older, bigger, stronger.  I need to get healthier because I am all they have.  I learned a lot of lessons, there is not anyone that cares what happens to them.  We don't have anyone that would step up if something was to happen to them.  So my self-care will be guilt free (maybe) and not selfish.  It's just like if I needed to take a chemo infusion if I had cancer - I NEED IT, THEY NEED IT. My care is essential to their care.

So I am not sure where I'm running to if I'm going to train for a race, for now it's just more of a therapeutic thing.  I have to lose the awkward, get back in runners shape, lose the summer 20 I put on, and figure out if I'm going to do a race, or just I don't know, I just don't know.