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LJ Goes, Journal Entry, July 10, 2013

EnterpriseLJ Goes, Journal Entry,  July 10, 2013

Noah has been taken off all anti-inflammatory meds due to unexplained welts and rashes all over his body. Creases of his thighs, behind his knees, his face, calves and ankles.

Noah is resisting ABA training at home. Many hits kicks and punches. Hair pulled. Shirts ripped.

Pinched Liam today to try to get him to play Spill the Beans which really means stim on the beans.

After spending 3 hours this morning scouring carpets with a comb to make sure I have gotten every last piece of clay (his PICA has returned so he is trying to eat clay and plastic) I apparently missed a golf ball sized dollop in his sister's room. Praying so hard he didn't eat any.

Tried to elope from the car 14 times, an improvement from Monday, which was 21 times.

Mom is visiting and asked me to please sit down and just chat for 5 minutes. Please. Told me about an amazing table her neighbor got for 1,100.00 that is just fantastic. The leaf comes right out, and there is a huge amazing storage box at the bottom. She's never seen anything like it.

Realize this lost time will cost me the 3 Illinois vaccine exemptions I was supposed to send off to moms who need help for their kids with autism.

Maybe tomorrow.

My beautiful daughter, who has appeared in a documentary herself and has had many opportunities to be in front of a camera, has become smitten with Emma from Kitties Mama. She is an adorable little girl who does make up tutorials, but also, her family's life is chronicled in a vlog. My daughter doesn't realize the vicarious nature of her love for this family and says not once, not twice, but 11 times: DO you think when Noah is better we will go on vacations like they do? Will we decorate like that for Christmas when Noah is better? Will we have parties and food like that when Noah is better? Look at her brothers? They all have so much fun together...maybe...when Noah is better, etc. When this then that.


When Noah is better and mom is not fighting for him and talking about what happened to Noah and we aren't going to doctors for Noah and we aren't going on drills for Noah and Noah stops hitting us and starts sleeping and eating real food and we all don't have to worry about Noah running away and getting out of the car and screaming and....

Then will it be better? I do not have the heart to tell her there will most likely not be money left for these things when Noah is better.

When...I remind myself...I still...say...when.

I got cocky today and tried to do a drill without the ABA therapist we are now paying for out of pocket. This was a bad decision because allllll the hard work we are putting in conditioning him to resist fountains was destroyed when he ran away from me and got half way around the lake I was trying to protect him from jumping into. Getting him back in the car by myself, while 8 people pretended not to see my bra when he pulled my shirt down or my tears when he ripped my glasses off proved challenging because, well, he cannot see me react. So, I have to have him in front of me. He is very smart and fast and can wriggle out of just about every hold you can come up with.

I gave him his two choices. "Noah, do you want to go to the picnic table or do you want to go to the car?" I WANT A SANDWICH!!!!!! He screamed 18 times. Not an option buddy. Autistic enteritis. MMR nailed you son. "Car or picnic table, Noah?" Neither! Throat kick mom! Then 5 minutes later at home, "Mama chase me! Kisses! Love mama!"

Come home to find NT kids wanting to do a million things that all involve me. Sorry! Mommy is literally broken and spent.

Give Noah his Splash (neocate) and pray a prayer of gratitude he takes it with only verbal aggression.

Hear my dad and husband talking about the child with autism who was killed by his step brother and it is all over the news. National, apparently. I have not watched the news for a few weeks (a tad busy) so I get the downlow second hand. Immediately I feel very, very angry. Heartbroken of course, for this poor family...but...OUTRAGED that our very own Alex Spourdalakis was killed and not a SINGLE NATIONAL NEWS VENUE COVERED IT. Sickening, repulsive, OWNED media. Nobody wants to talk about Alex because his killer was medical negligence. Those hospital/pharma folks SIT ON THE BOARDS OF THESE MEDIA OUTLETS. Everyone fights about political parties, unions, guns, gay rights, abortion...

While the SILENT AND PRIMARY KILLER OF OUR CHILDREN IS OUR MEDICINE AND OUR FOOD.

345 unread emails in my inbox.

Open my email and hear from a friend about a pharma rep who came clean to her--yeah, they know the psychotropics are causing these aspie/autie kids to kill...but, the best they can do is develop a profile for the patients who are most likely to become violent (they will still get their meds though...but they are working on the profile, so...that's something). Like the IACC. My friends flew across the country on their own dimes this week to tell their children's stories of tremendous autoimmune illness as the result of vaccine injury, mistaken as autism. Mr. Insel, who calls Autism a national emergency couldn't be bothered to stay for the entirety of meeting he runs...4 times...a year. "An emergency", he calls autism...an emergency.

Got a big date with the grandkids...was the reason that went on public record.

Now, my youngest is very frustrated his video game doesn't work. He is crying. I want to care. I should care. I neeeeed to care. He has been behaving well and been so understanding of our intense summer with his older brother. Deep down, I know he thinks things will never change. Very clearly--he has resigned to this life of pain. I will not do anything about his video game because I simply cannot switch gears. Our current government is destroying our kids...they know...IACC is a sham...and, Mario won't run fast enough to get Bowser. Really? How is this my life?

4 Hersheys kisses for dinner and some soggy carrots.

Time for bed, I am told by my husband.

Can't wait to get up and start all over again tomorrow.


Lisa Joyce Goes is a contributing editor for Age of Autism and co-author of the book and thought movement, The Thinking Moms' Revolution

Comments

Jana

You are a hero. I admire you for your sacrifice and dedication.
I do not have autistic children, but I do have 5, and they all have, to siome degree, food and environmental allergies that affect their behavior- just tonight my 7 year old son asked me two questions- both of which I thought I answered satisfactorily- and he broke down in tears and sobbing and a physical tantrum. This is a frequent occurrence with my two boys, ages 7 and 4. I have had to walk out of stores with them in uncontrollable screaming fits with them tucked under an arm. And not because I do not set boundaries, do not teach them.
I feel that I understand a small part of what you go through everyday.
I also agree that these children are victims of the system- the vaccines, and the food.
Please, if you have any energy left at the end of the day, google the G.A.P.S. diet, or the author Dr. Natasha Campbell-McBride. Her son was severe autistic and she healed him with food. Many others have healed food allergies, anxiety, schizophrenia, and other illnesses that seemingly are not related to food. But they are.
We are doing this healing diet with our children right now. I have seen huge improvements with my younger son and his illogical, emotional outbursts. My older son is taking a bit longer but, he is older and has some other health concerns as well.
Also, I highly recommend the book Real Love in Parenting- this book is saving my sanity through all of this. It's like the book writes down everything I always wanted to accomplish with my parenting, and gives me the way to do it. I love my children. I know you do, too. This book helps keep that real.
My prayers and thoughts are with you. May God bless you!

Twyla

I wish there was something I could do that would make a difference for your son.

Heather

Hugs Lisa! I just sent you a FB friend request. I'd like to hook you up with a friend of mine whose daughter had PICA and she has been able to keep it under control. She has an amazing story with her daughter. Blessings!

Sue S

Hugs, LJ! So many of us have been there. My son IS getting better, but painfully slowly, and I'm not sure he will ever be recovered because his MMR and Polio vaxes did him in. But the good days far outweigh the bad, thank God, especially since he is now 15 and much bigger than me.

I'm not sure who you are using for a doctor, but it might help to try having a fresh pair of eyes look at Noah. We changed docs many times when we felt like we hit a dead end, and each one has given us another piece of the puzzle. Good luck and God bless you and your family!

Bob Moffitt

Ed

I don't know if your article is evidence that Insel and co did not "hear YOU" .. when YOU informed everyone who took the time and made the effort to read your well-documented, prescient, observations .. regarding the fast rising rates of autism all across the country.

Obviously, the man serves at the pleasure of someone ... or .. some conglomerate of self-serving interests .. who he listens to quite carefully.

For them, Insel has done and continues doing the same "hell of a job" that Bush told his FEMA director was doing in the immediate aftermath of another "national emergency" .. hurricane Katrina.

Otherwise .. he would have been fired just as FEMA director was. Instead .. he continues to serve .. long after the honorable thing for him to have done is RESIGN.

Ed Yazbak

Brava Lisa, great piece!

Bob,

Insel and Co evidently had a hearing problem.

http://www.vaccinationnews.com/dailynews/December2001/Autism1999NatEmerg.htm

Allie

Love you, girl. We've never met, probably never will, but these stories NEED to be told.
I've been the victim of "I need to tell you this!" too . . . because I really, really needed to stop typing to hear about the *amazing* tacos you had last night at dinner, instead of emailing our ND about future blood testing, lead levels, glutathione therapy and methylation reactions to watch for. Yeah. Tacos.
You're on my prayer list, Noah too.

Laura

I would tell you to keep fighting LJ, but I know I don't have to. So, I will tell you that I appreciate it. I honor your work. Prayers for you & your family.

Visitor

Great journal entry Lisa!

Bob Moffitt


God bless you both .. may your prayers and your laughter see you through troubled waters . let hope be your guide to a better future.

"Mr. Insel, who calls Autism a national emergency couldn't be bothered to stay for the entirety of meeting he runs...4 times...a year. "An emergency", he calls autism...an emergency."

Webster's defines emergency as: "a sudden, generally unexpected occurrence demanding immediate action"

I think we should all thank God that 911 calls for daily emergencies are handled by people who actually do take "immediate action" to correct whatever that emergency was .. rather than Mr. Insel .. who .. under his "watch" .. has personally witnessed the only emergency he is responsible for .. autism .. increase from 1 in 10,000 - 1 in 500 - 1 in 250 -1 in 110 - 1 in 88".

His non-response over the years would be tantamount to a police officer standing idly by as he witnesses some poor guy getting the heck kicked out of him by a mob .. and .. he does nothing about it.

If he really believes autism is an emergency .. then he should have the moral ethics to resign .. because .. as the first responder to OUR emergency .. he has been a disaster and we deserve better.

"Got a big date with the grandkids...was the reason that went on public record."

The house is burning down .. and .. the fire chief left the scene for a "big date with the grandkids".

Par for the course.


John Stone

I wanted to say what a courageous act it is for Lisa to write this - many families go there but few have told it like it is this extent. The autism community is vastly in her debt.

Susan

LJ, I just wish I could give you a hug and make it all better--you are a true hero and I know all the effort will be worth it. Thank you so much for posting this!

Zed

Thanks so much for sharing this. Bless You All in your journey.

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