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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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. 

Monday, September 3, 2018

My Last Long Meaningful Run

My last long meaningful run was September 4, 2016, it was a Sunday, it was the Disneyland Half Marathon.  I was so excited training for it and doing it, and I had a Sparkle Athletic skirt that I got for it, I raised money for my favorite charity (Talk About Curing Autism).  It's always a thrill to do a RunDisney event, and get treated like cattle and put in our pens at 4 am.  All joking aside RunDisney events are magical and I've seen people that couldn't on a great day run 13 feet bust out 13 miles in a Chewbacca costume - for real!

Two Years Ago, two long, life changing, therapeutic growing years.  This race was sort of my runner come back, I had lost my mojo, and wasn't all that into it, but I trained and was ready felt strong, and couldn't wait to run. 

There is a a whole ritual to participating in a Run Disney event, and going to the Race Expo, and picking up your packet.  On this particular race, I was lucky enough to beat the crowds and go on the first day of the Expo, right after I dropped my kids at school, I was able to head over to the Disneyland Hotel and pick up my packet, and then I got this phone call hysterical phone call in the basement of the Disneyland Hotel. 



My son was injured at school and rushed to the ER via ambulance.  I was 30-45 minutes away from him, and felt like the shittiest mother on earth.  My sons life was forever changed, our lives were upside down, and I was struck with a horrible sadness, inadequacy, and feeling of failure and an incredible disappointment in myself and so many that I thought should have had his back.  The injury and incident, changed us, me as a mother, us as a family, and traumatically effected my son who is still recovering.  But this is something for another post.  He is on a good path now and almost fully recovered, so we are grateful for that.

But to race day.  It was 3 days post accident, the day after my son was released from the hospital, and I decided with consultations with my husband, that I could leave for 6 hours and run the race. 
13 - point - 1 friggin miles of tears. 13.1 miles of PTSD, 13.1 miles that I didn't want to run, I wanted to be with my little one.  I wanted to hold him and protect him and the mom guilt kicked my ass for even doing anything like that for myself.

I came home and basically hung up my Hoka One's and went on recovery mode for my kid.  I had to learn a whole new injury, syndrome and how to help it recover with an already challenged kid with severe autism.   I was just a journey I needed to take, and I don't really have a reason or excuse why I didn't really run anymore.  The few times I tried to take a run, my head went to a dark place, so I just went to the gym or my garage and worked out 1 mile from where my child was, and not 30 miles from him.  It was weird, I felt like I had a little control of his safety if I was close to him, I can't even explain my shattered feelings and reasons why. 

But anyway, my body needs it now, my mind needs it now, and I think my son and husband needs the me that used to run, and like to run, and felt empowered, independent and strong when I run.  I ran 10 half marathons.  I didn't win them, I didn't even come close, but I finished, and from the fat farm I came from it was quite the damn accomplishment.  So I'm gonna add running back into my repertoire.  I'm not sure I'm ready for a race, but I think I can see myself doing a Turkey Trot on Thanksgiving, and maybe a half marathon on Super Bowl Sunday. 

My son is recovering from a traumatic brain injury, my chubby buns can get out and run.  Like I always said my $100 running shoes were the best therapy I ever had.  I'm back, I feel it, I need it, I am back.  Let's do this!