11 1/2 months after his stem cell infusion. Previously was unable to say whole words ... unable to string sentences together, needed tons of prompts to speak.... His speech has progress greatly. He still needs work on articulation ... but He is saying ... " Dear Jesus, Help me to talk more each day. I love you Jesus. Amen. want to talk more Ma and Pa. Good Night Mama." This is his own prayer ... Joshua is 19.
Tuesday, May 15, 2012
Thursday, April 12, 2012
The Twelve Cost of Autism
I have struggled over today’s blog entry … because laying the truth out there could possibly discourage parents from seeking help for their children …. Feeling the cost was too overwhelming. But then I also know if ordinary folks do not know the truth, the whole truth and nothing but the truth, help for our struggling families will never come about …. DAN btw stands for Defeat Autism Now. doctors across the nation that actually treat the medical needs of our children ….. But sadly many of them also will not take insurance … leaving us vulnerable to the cost of their treatments also …
So:
The 12 Cost of Autism …. (just a few actually)
On the first day of treatment our Doc says to me:
Your son needs a MRI, but insurance won’t cover it for thee …
On the second day of treatment the school says to me:
Your son needs an aide, don’t forget the MRI, but remember what I said … the school nor insurance will cover it for thee…
On the third day of treatment our OT said to me:
Your son needs a weighted blanket, don’t forget the aide, or leave out the MRI, but the school nor the insurance will cover it for thee … (it’s getting oh so costly…)
On the fourth day of treatment the Speech therapist said to me:
Your son needs a speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee …
On the fifth day of treatment the doc says to me:
Your son needs ABA, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee … ( oh honey what can we sell now ….)
On the six day of treatment the allergist says to me …
Your son’s diet needs a changing, along with so much testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee … ( I guess we need a cheaper house to live in now ….)
On the seventh day of treatment the Psychiatrist says to me…
Your son needs lots more therapy, his diet needs a changing, along with so much testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee…. Now what am I to do …? (good bye goes all our savings ….)
On the eight day of treatment the DAN says to me …
Your son needs many supplements, look into more therapy, along with all the ABA, his diet needs a changing, go get all that testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee …( Now where’s my credit card gone … )
On the ninth day of treatments my Mother says to me …
You need a vacation, your son needs many supplements, look into more therapy, along with all the ABA, his diet needs a changing, go get all that testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI but the school nor the insurance will cover it for thee … (wow this credit card is getting drained ….)
On the tenth day of treatments my Husband says to me…
He broke another DVD, we all need a vacation, our son needs many supplements, look into more therapy, along with all the ABA, his diet needs a changing, go get all that testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI, but the school nor the insurance is required to cover it for thee…. (Ouch, this credit card is maxed out)
On the eleventh day of treatments my Father says to me…
You need a freezer for all your special food, he broke another DVD, you all need a vacation, your son needs so many things, look into more therapy, along with all the ABA, his diet needs a changing, go get all that testing, an expensive speech device, a special weighted blanket, don’t forget the aide, or leave out the MRI, but the school not the insurance is required to cover it for thee … ( has the new credit card came yet???? … thanks Dad/Mom for the freezer!)
On the twelfth day of treatment … my friends said to me …
Isn’t it great you have insurance … to pay for all these things … I don’t have the heart to tell them. My child is so much better …. But only because we are greatly in debt …
So it is here, my song ends…
What is it worth to have a child that no longer has seizures, who is finally potty trained, can express wants and needs … Is not self abusive or aggressive any longer. What is it worth to hear … Mama, I love you … Or Jesus, Help me to talk more? What would you pay?
Priceless you say?
… but it wasn’t. It has come at a price of over $1000 dollars a month on average. It has come at a price of countless overtime hours. Extra jobs, sacrificing on amenities for our home and lives … No shopping sprees for the latest fashions, poor hairdos … seldom going out to eat … and on and on … It has come at a great personal sacrifice. You will see our technology is years and years behind most and our cell phones came to us from Noah’s Ark … and our TV and internet service is worthless. Our home has no curtains … and I own but 4 pairs of shoes … and no makeup … I am not complaining … just saying it like it is.
Insurance is not required to pay for any of the treatments we have sought after for our child’s health.
They say Autism is not treatable. They ignore ALL health issues … and say … you know, that is just what Autistic children do …
Shame on you American Medical Doc’s … Shame on you Insurance. Because my son … like so many others prove Autism is treatable and the symptoms can be removed. It is time we start treating our sick and injured children. Wake up people!
Wednesday, April 4, 2012
Top Ten Myths
Top 10 Myths Spoken to me at various times in Joshua’s life ….
Myth 10: He Can’t Cut, He doesn’t have the needed coordination skills. His cognition is way too low …
Fact: He can cut. He just cut up my curtains. I have them go get him … I proved to them he could cut. That their expectations that he was mentally retarded lead him to be able to manipulate them in not believing he could do anything…. (IEP meeting years ago.) Too many therapist / doctors make assumptions that a non verbal child means a child without intelligence. Time to get realistic testing measures in place….
Myth 9: You must put him on medication. It is the only way to control his violent nature.
Fact: Joshua is not violent. His body was in pain. Once we treated the pain by removing the foods that was hurting him and healed his gut from the bacteria that was harming him, all aggression ended abruptly.
Myth 8: Children with Autism are Self-Abusive. Learn to live with it. Here this medication might help.
Fact: Joshua was severely intolerant of several foods. When we removed those foods from his diet, ALL self abuse ended abruptly.
Myth 7: Children with Autism simply have sleeping problems. They need medication to help them sleep. Children with Autism have eating problems; you may need to consider growth hormones and appetite stimulants …. He has insufficient skills to handle the textures of different foods ….
Fact: Joshua’s sleeping problems ended within one month of going gluten/casein free. Joshua use to have a severe eating disorder. He would go for days and days and days and not eat anything. He was severely malnourished. He was simply put failing to thrive. But thanks to his new “diet” He grew leaps and bounds within the first year he put on 30 pounds and grew 9 ½ inches. He is still small for his age, but he is robust and healthy. He eats better now than he ever ate before. I don’t have to beg him to eat anymore. He eats all the time. As a matter of fact he SAYS” I’m hungry Mama. Feed me!” It is true that some children with Autism need a feeding tube or feeding therapy because of other complicating medical issues … but that was not the case with our child.
Myth 6: Joshua will always have seizures. There is nothing that can be done.
Fact: Joshua’s latest EEG shows for the first time NORMAL brain waves. No uneven spikes, no erratic spokes. He has remained seizure free for the past 6 years. Prior to that time with medication being given alone, he had upward to 30 to 60 absent seizures a day and on average 1 to 2 grand mal seizures a week when it was at its worse. The need for some seizure medication remains an issue for Joshua. The only seizure that he has had in the past 6 years was when we tried to completely remove his remaining seizure medication …. However, at 19 he is now on less than ½ the recommended dose for therapeutic treatment. We have reduced his seizure mediation down from 3 to 2, and we have been able to successful wean him from being at the top most allowed dosage to down below “therapeutic levels.” We are in the process of successfully weaning him from his seizure medication.
Myth 5: With his cognition he will never be potty trained. Just accept that …
Fact: with Joshua’s stem cell infusion … overnight his toileting issues were healed. His gut was damaged and needed treatment. His body was ill. It needed medical care. He is 100 percent toilet trained now. Cognition wasn’t the problem. Damaged intestines that are now healed were ….
Myth 4: It is just coincidental that Autism begins at the same time vaccines are given.
Fact: Joshua was typically developing all up until he was given 5 shots all in one day’s time. His fever rose to over 106 degrees … He went into the first of a series of seizures. He was covered in a serious rash. Coincidence????? He quit walking, he quit talking, he quit letting us touch him, and he screeched for hours and cried out in pain. He quit looking us in the eye …
Myth 3: Autism is not treatable. It is a lifelong disorder. Accept that.
Fact: I have many many friends now that have children that are no longer diagnosed with Autism. They lost their Autism diagnosis because of biomedical treatment. Autism is a medical crisis. We need medical doctors to start treating the illness and stop shoving medications down the throats of these hurting children.
Though Joshua still has Autism, his life has been changed miraculously through treatment … Self abuse is gone, seizures have stopped, aggression is gone, he is no longer having sleeping problems, almost all stims are gone, most of his obsessions are gone. He can now express his wants and needs …
ALL without medication … but it hasn’t come cheap. Therapy, supplements, alternative treatments have left Geoffrey and I seriously in debt. While the medical community, the CDC sits back and says these treatments aren’t proven …. They get out their prescription pads quickly for dangerous psychotropic medications … not proven either … not even proven safe for the babies that are being given to them …but big money to be made by the pharmaceuticals that push them. Can you imagine I have an acquaintance that I know … her 4 year old preschooler is now on 4 psychotropic medications???? Unbelievable … shameful. Scary.
Myth 2: You must learn to accept he will never speak. Children past 5 who have not learned to speak never will.
Fact: Joshua started speaking at 14. When we learned that his diet was profoundly altering his ability to learn, and removed the offending foods, within 5 days he said his first meaningful word of his life: “Eat”. Through continued work, Joshua now has a vocabulary that is so large I have lost count. He is not conversational yet, but he is getting there. Though much of his speech is “rout” speaking, he is adding to his words daily and learning to use new words appropriately. He will now comment on things being funny. He will say lines from movies that he enjoyed and giggle over them like his sisters. He makes request for what he wants and needs. He will now speak to others outside of the family … greeting them, asking for help, and telling them to leave him alone and he needs a break if that is how he feels. He also will remind me to give him his supplements. His speech has taken off since his stem cell infusion. It has been nothing short of a miracle. He still needs much work … but praise be to God. This myth is a myth too!
My all time favorite Lie, straight from the devil’s mouth …
Myth 1: If you loved your child, you would accept him for who he is…. And not try to change him.
Fact: Not sure how it is loving to allow a child who is in pain and is suffering to continue in that pain and allow the suffering to go on and on. If my child had diabetes that could lead to blindness, sores, amputations, death … is it not loving to treat him? Autism is treatable. Children can and do get MEDICALLY better when treated. They DO have serious medical issues that are associated with Autism … Allergies, gut diabolisis, toxic overloads, fungal/viral/bacterial overloads, colitis, celiac, seizures … are but a few medical needs that are proven to be all a part of the makeup within children with Autism. My question is WHY IS IT NOT BEING TREATED BY MAINSTREET AMERIC AN DOCTORS?????
I totally love my son. Joshua is not autism. He HAS autism. His autism needs treatment. Joshua is fun loving, smart, creative, full of life and joy. He knows how to giggle and spread sunshine wherever he goes. But sadly sometimes he is just in pain and can’t get past it. And for that, shame on our system for saying it can’t or shouldn’t be treated.
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