Mama can relate

Financial Struggles Plague Families of Children with Autism
MU study finds this area often overlooked, but has major consequences
 
COLUMBIA, Mo. – The information that a child has been diagnosed with autism often throws parents into an emotional tailspin. A new study from a University of Missouri researcher says most people don’t immediately consider the major financial struggles that follow. She suggests more outreach is needed to help families plan and cope with the profound financial life changes they may face.

 “As a parent, the diagnosis of autism upends your world,” said Deanna Sharpe, associate professor of personal financial planning in the MU College of Human Environmental Sciences and whose own son was diagnosed with the disorder. “It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important.”
 Some of the costs include specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements. Applied Behavior Analysis (ABA), a widely respected and recommended behavioral intervention, can be expensive. This
 intervention requires children to work one-on-one with a trained therapist for 30 to 40 hours each week. In the study, some parents reported paying as much as $30,000 a year for ABA therapy. Parents whose child with autism was destructive also reported paying compensation and replacements costs for items that were destroyed.
 
Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget.
 Sharpe says it is important to begin financial planning as soon as a diagnosis is made. She suggests financial planners need to help direct families to available resources and help them think seriously about the implications of spending all their retirement money on various therapies or having one parent step out of the job force to care for a child when other options could be available.
 “Autism has a startlingly huge impact on society,” Sharpe said. “We know early intervention can influence how well a child will do later in life. It’s a human capital investment that can prevent or reduce the need for public support when a child with autism becomes an adult. However, it is costly to obtain this intervention.”
The study – “Financial Problems Associated with Having a Child with Autism: How Financial Advisors Can Help” – won the Association for Financial Counseling and Planning Education outstanding conference paper award. The study was published in the Journal of Family and Economic Issues.  Dana Baker, University of Washington, co-authored the study.

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Veeeeeeeeerrrry long article about toxins and developmental issues – but worth reading

http://www.iceh.org/pdfs/LDDI/LDDIStatement.pdf

Does this mean I’m not a quack mother anymore?

http://www.worldnetdaily.com/index.php?fa=PAGE.view&pageId=57629

Pica Perils

Babies mouth everything.

Rattles, their hands, teething biscuits, toys, your boobies etc., etc.

After the 3-year mark, most kids stop putting non-food objects into their mouths.

No more worries about intense baby-proofing, and you don’t really have to panic anymore when you see a penny lying on the floor or if the door to the cat litter box is open.

When you have a child with ASD, a condition called PICA is pretty common.

PICA stands for – Pretty much I Chew Anything.

No, not really, but it should!

The actual definition is listed as such:

Pica

Definition

Pica is a term that refers to cravings for substances that are not foods. Materials consumed by patients with pica include dirt, ice, clay, glue, sand, chalk, beeswax, chewing gum, laundry starch, and hair.

Anyway, what this means is that you still have to panic waaaayyy after the 3-year mark if a penny is on the floor or if the door to the cat litter box is open.

Mr. Ronan James and PICA are old friends.

His oral fixation began at birth, with 24-hour demands for his ditties (breastfeeding).

After weaning, when he was over two years old (hey, old habits die hard!), his fingernails took over the burden of his oral fixation.

I never had to cut his nails.  He bit and chewed them down to the quick and then some.  Sometimes, until they were bloody – eww.

The nail chewing progressed to pencil and crayon munching, which was then followed by the “strange bit of mystery matter from the floor” phase – eww to the tenth power.

Many things of indescribable nature have been forcibly pried from the reluctant jaws of The Ronanhoover.

From paper and plastic, to boogies and mastic – we thought we had seen it all sucked into and passed out of Ronanhoover.

Then, while apparently extremely bored on February school vacation, I went to check on a pooping-on-the-potty Ronan, only to discover, that whilst doing the dooty and entertaining himself with one of his handheld electronic games, he had morphed into RonanhooverBling.

I walked into the bathroom to see my  smiling, seemingly innocent child with  an entire front row of SILVER TEETH!

Yes, he had chewed the silver paint off the frame of his toy and gave himself a nice little homemade “grill!”

I was horrified!  I tried everything to get his grill off – toothbrush, scraping, soaking, gargling – but that thing wasn’t budging.

I had to resort to the cruelest.

My spiky, knife-like jewelry file.  Surprisingly, this was not something The Ronanhoover wanted in his mouth – too bad- he brought it on himself!

I had to literally file the bling off his squirming, screaming teeth, but finally, I got my Flavor Flav-less son back, with his adorable white smile intact.

He sees the Pedi GI next month to deal with remaining magpie tendencies, and hopefully, we can wait that long…

Last week he ate the ink from a printer cartridge…

Adventures in autism, ladies and gents, adventures in autism!

flavaflav.jpg

Universal Autism Insurance?! Wha, wha, wha WHAAATTT??!

Ummmm, yes.  We’ll have us some of that!

Too bad it will come after the fact that we are bankrupt with ridiculously damaged credit from all of the medical bills that our insurance won’t cover!

Thanks Blue Cross.  Kiss kiss.

http://www.thedailygreen.com/environmental-news/latest/autism-insurance-47022705

Autism and the Methylation Cycle

Some interesting reading from the book by Dr. Bryan Jepson  Changing the Course of  Autism  on the problems with the methylation pathways in children with autism. 

http://books.google.com/books?id=BP86uPB3bi8C&pg=PA101&lpg=PA101&dq=methylation+cycle+autism&source=web&ots=D7_SYXRMhA&sig=fmcd3pnWJNPzsP8FuN1dX6T1_I4

Ronan’s Uncle Carl is an esteemed scientist, who graciously reads all of the stuff I send him and then sends his comments and suggestions.

Here’s Scientist Carl’s thoughts on this read…

There are so many theories that its hard to really know where to point and what to believe.  What strikes me most interesting about the gene mutation theory is that it might be the most “upstream” of all theories, such that gene mutations might lead to increased susceptibilities.  Gene therapies are thought to help treat people with mutations or entire gene deletions, but there are no cures.  Your genome is your genome.  Genes are the machinery that determine synthesis of proteins/enzymes/cytokines…, all of the components that control signaling and metabolism.  The gene therapy hypothesizes if one has a gene that generates an anomaly in one of these components, placing a new gene source that either blocks or floods the anomaly will correct the anomaly.  When I left graduate school people thought that gene therapy was going to be the next/best approach toward disease treatment.  That was 18yrs ago and its still not well understood/controlled.

I believe that the next wave is what’s called individualized medicine, where before any treatment for any disease is initiated, your genome information is collected (a colleague works for a company that does this – https://www.23andme.com/).  Some years down the line the thinking is that by knowing your genomic sequence we can use an algorithm of your genome and your disease/condition will yield the best treatment pathway.  I hope this doesn’t take 18yrs.  In the meantime, we’ll keep trying treatments for the pieces.

Love, Scientist Carl

Interesting, indeed!

Another piece of the puzzle?

My brother-in-law, who is a mad scientist, sent me this article a while ago.  Another piece of the puzzle? 

http://web.mit.edu/newsoffice/2007/autism-1205.html

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