Monday, May 11, 2020

What I've Learned

Here in California, we have been under some pretty restrictive lockdown because of Covid-19.  Unless of course, you count that you can go to any big box store or home improvement store, and have just about anything delivered to your house.  But thats it, you're at your house for 2 months, with your family.  I love my family don't get me wrong, my kids are my world, but I like them to go to school - no, I LOVE them to go to school.  I like me to go to work.  I LOVE my husband to go to work.  That's all been taken away, and frankly it sucks monkey balls. It sucks for me, it sucks for my kids, it sucks for my husband.  If you're still loving quarantine life, then I need your secret.

But in the midst of this I have learned new things, and some of my old tried and true convictions remain unscathed.

Exercise ALWAYS makes my mind feel happy.
(Why do I put it off?)

Cooking for 4 people 3meals a day everyday is exhausting.
(we get take out for Taco Tuesdays, or I'd have died by now)

My husband talks more than any other human being on the planet.
( he has the gift of gab, and uses it - relentlessly)

My son J tells some really funny jokes.
(tells me at least 4 a day)

My son F is a sweet happy soul.
(this lockdown is real hard on him, but he's handling it incredibly well)

My dogs love us being here all the time.
(many walks, and lots of cuddles)
I still hate laundry.

Faith and Fear can not live together in the same house. (this is fact)
(if I didn't have Faith in God that all will be okay, I can't imagine)

Trying new things is good.
(new foods, new exercises, new books, new recipes, new crafts)

Learning new things is good.
(Knitting, baking, cooking, and yoga)

I didn't go to teacher school for a reason.
(I have zero patience)

Living cautiously, without fear is making this nightmare tolerable.

A Roomba was the best investment I ever made.
(2 dogs, 2 kids - crumbs ALWAYS)

I will never buy this New Normal BS.
(I will go back to the Real Normal as soon as I won't get arrested for it)

Thinking critically and independently is the best thing you'll ever do for you and your family.
(Question everything and research what hits you in the gut)

I wrote cards and mailed them, and it was refreshingly nostalgic.

If I didn't have a motorcycle to ride, I don't know how this would have turned out.
I miss my friends, and I miss my REAL NORMAL life, I'm going back to you, and you should too.

Stay Safe, Stay Healthy, Stay Sane!

Thursday, May 7, 2020

Safer At Home except for the PTSD

I’ll be honest, I have not handled or am not handling this “Safer at Home” Bullshit ordered by our government, well at all for a variety of reasons.  First one being, I HATE people any people telling me what to do. Didn’t like it when my parents did it, my teachers, I tolerated bosses because of the money.  But I really hate self-righteous sanctimonious politicians who look like they’re enjoying our plight, financial crisis, losing businesses, and literally on house arrest for doing nothing.  But I digress.

Today I felt like I was hit in the stomach with a bat.  It hit me, why I’m really struggling through this.  In the 55 days we’ve been in quarantine, we passed a milestone, it was 11 years ago one of my kids was diagnosed with Autism.  I don’t celebrate that day, I acknowledge it, and try not to cry.  

I am feeling like this quarantine are the early dark days of Autism.  The days when I didn’t know what was happening, what was going on, how to cope, and I was a literal prisoner in my house with a newborn and 40 hours a week of ABA therapy for my son.  I couldn’t leave the house, and in those days the husband worked until 10 at night.  It was lonely, it was sad, it was scary, people were telling me what and how to do things, and I just hated those days. My sons behavior was so unpredictable, I rarely went out,  I cognitively lost my son, I lost a motherhood that I had always dreamed of.  Those were hard days.  They were so hard. 
The days were long, they were lonely, and I didn’t know anyone in my boat.  I buckled down and worked hard, and did everything within my power to help my son and eventually my 2nd son was diagnosed. It was isolating, depressing, and soul crushing.  Because as friends with typical kids grew and developed, and I saw the deficits in my kids, it was hard, and they distanced or you distanced.  My kids wanting to watch the same movie or section of a movie over and over and their “friends” had out  moved on to new things, they’d distance or I’d distance, and I was mostly alone navigating through a labyrinth of unknown. 


I think when my kids were 6 and 4, I found my groove, I got my jam on with other like minded moms, and they helped me up out of the dark, where I saw a light, I saw the progress in my kids, they taught me, they helped me, they loved me until I could learn to love this life I was dealt.  Even in my hard days or their hard days, I had a place to turn. I learned more about autism, I learned about never giving up, and I learned about how important it was to always be learning. I love my people, our friends, our baseball league, our dance classes, our webinars, our coffee talks. I love The Autism Community in Action and what it’s done for my family and my son.

So what snapped in me in this “Safer At Home” nightmare is the fact that I miss my people. I need my people.  I know many feel the same, so I see you!   We worked so hard to provide our kids with as full of a life as possible, what most people with neuro typical children take for granted, and they have come so far, and we are locked up. LOCKED UP, can’t go any of the places that they enjoy or love, and it’s killing all of us, if you know autism, you know what I’m saying. 

So to you special needs parents that are feeling that PTSD of being  back in those early days of isolation and the darkest days of our lives.  I feel you, I see you, and I am praying for you.

Monday, February 17, 2020

The Unexpected Gift

4 years ago this weekend, I took a class.  I got my Motorcycle endorsement to legally ride a motorcycle.  I had been a passenger on my husbands Harley Davidson for a little over a year, and wanted to spread my wings so to speak and try something new and get my own bike.

I passed the class, passed the test, and my life was forever changed, without expecting it.  I really did this, got on the back of the bike and learned to ride for my husband, it was something he loved, and we needed to shake things up a bit.  Our life was a rut,  a serious rut, parents of little kids with special needs your life is an appointment book of therapies and eggshell walking.  So while I was aware and respectfully fearful of the risks of motorcycle riding, I took the challenge, and got a gift.

I am fairly certain that Harley Davidson was largely responsible for repairing some serious cracks in our marriage.  80% of special needs parents/marriages end in divorce, for a variety of reasons.  We were on a very slippery slope when I first got on the back of his bike 5 years ago.  But I got on the back, and I had to touch him, trust him, listen and follow his instructions, something I fought for a long time, as a mom and a wife.  But it helped, it changed us, it strengthened us.

Being on my bike, was the absolute only thing I could do, that took my mind off of my kids special needs, and all of the thoughts that come with those needs.  When you're on a bike, you have to be laser focused on the road and all around you, there is no room in that tunnel for the "what if someone isn't nice to my child at school" thoughts.  It brought me a relief, a strength, it rebuilt my mind, it lifted me out of a sea of motherhood sludge, it brought me respite and relief that no anti-depressant or therapist could.  Now when I say that, don't think I don't love being a mom, because it was what I was born to do, I love it.  I'm good at it as long as I don't have to make Pinterest projects.

This gift of a motorcycle that I got turned into a lifestyle and a life.  The bike gave me more of a gift than I ever thought fathomable.  The Orange Coast Harley Owners Group has brought some great relationships, we have seen roads and sights that you never experience in a car.  I have ridden my bike over the Golden Gate Bridge, through a Giant Redwood, I have ridden and stopped in the Fabulous Five National Parks in Utah.  My adventures will continue on my Harley.

So as I reflect on this anniversary that significantly altered my life for the better, I want to thank Harley Davidson for the gift and the lifestyle and the fun and adventure and bringing me back to life.









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 AM NOT A DOCTOR AND AM NOT SAYING TAKE YOUR KIDS OFF OF MEDS,  FOR MY SON IT WAS NOT THE SOLUTION.  MEDICATIONS ARE NECESSARY FOR SOME PEOPLE.  BUT SEEK YOUR OWN MEDICAL ADVICE.

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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