Wednesday, February 15, 2017

The Love Letter You Must Send Your Children

Having recently lost my mom I've experienced first-hand how the days after losing a parent is a blur of emotions and things to do. Emotions you often can't wrap your head around, urgent decisions to make and the list of new responsibilities are overwhelming. 

As a single mom, it will be my daughter in this situation one day. In her case she won't just have to deal with losing me, she will instantly inherit the care, oversight and decision making for her special needs sibling. An overwhelming task for a parent much less a sibling, who is grieving too.

Like each of you I've been thinking about this for years and I constantly ask myself "how can I minimize the burden that will fall on her beautiful shoulders?" And here is what I've come up with so far.  Despite my always telling my kids, not to worry I'm going to live a very long time; I finally got real with myself and found a way to talk with my daughter about my death without scaring her. We talk about death in a loving and matter of fact manner, like any milestone we were planning for, a "one-day" thing. I laugh when I say "We both no one get's out of here alive". I am always telling her I love her and it's my responsibility to prepare. I can't take away the pain or the burden, but I can do all I can to ease the burden when the day comes”.  What I have found is that in talking she knows I understand what she is going to inherit as it relates to Nick, and that I love her and want to do everything in my power to help them both. I can tell it helps her, because she hears that I'm thinking not just about Nick but about her, and she get's the reassurance of knowing there is a plan. 

Perhaps most important of all is that I talk to my daughter all the time about what I'm planning and what to do when that day comes. I routinely tell her where things are, from my burial/funeral plans, how to get money right away, what insurance policies I have, and I check in with her routinely to make sure she remembers. 

No one likes to think about their own death, much less imagine the day we won't be here to care for our children, but the day will come.  And the thing I want to share most is no matter what your plan is, no matter how simple or complex I hope you will take the time and write an ‘I Love You Letter’ sooner than later. An "I Love You Letter" is essentially an easy-to-read guide to our personal wishes combined with the sort of practical and financial information survivors are too often left scrambling to find. In addition to all the plans and conversation I've written one for her and she will get it when the time comes.  And in my case my letter includes encouragement and gratitude for having the best daughter ever!

Also, writing an I Love You Letter can strengthen the  your estate plan if you have one. Because while your will should spell out what you want to happen to your assets and other items, it can take weeks or months after you pass for the legal process to start. In the case of my mom who had a will and a trust it will be almost one year before her estate is settled, and I'm told that is a good scenario. Although not a binding legal document, an I Love You letter can provide certainty in an uncertain time and help bridge the information gap in the early days while your will winds its way through the court system.  

Writing your letter
Aside from any personal messages you would like to deliver to your bereaved friends and relatives, the well-conceived I Love You Letter relays information concerning any important documents as well as account numbers and contact information for bank, brokerage or other financial accounts. For example, do you have a locked safe? Let your loved ones know where it is and the combination. What about insurance? Use your letter to notify family members of any policies, policy numbers and whom to contact to make a claim. To ensure that your estate doesn’t end up intestate — a situation in which a court decides what to do with your assets because your heirs aren’t aware of your will — include the name of your accountants, attorneys or financial advisors and directions on where to find the latest version of your will.   In may case, I have designed a single person, who Evyn knows, as the one who has copies of ALL the important documents listed above so she only needs to make one call. 
Given Nicholas will always require a guardian, and he has an extensive medical, therapeutic and educational history I have created a file called "Care of Nicholas Jones" that details everything from preferences for their future custody and upbringing to medical history, current medications, caregivers, caseworkers. 
Finally, don’t forget to list your email and social media account passwords in your letter. This will make it easier for your family to tie up any loose ends and protect your identity after your death.
 Delivering your letter
Address the letter to one person – your spouse, a sibling, adult child or trusted friend, and leave it where it will be easy for them to find. For example, you may want to put your letter in an envelope with a name on it and place it in a bedside table or send it by email for them to keep. Remember, you are doing this out of an abundance of caution. Hopefully, your I Love You Letter will not be needed for many years. If that is the case, return to it at least once a year, perhaps around tax time when much of this information is already top of mind, to update account numbers, add new ones and get rid of accounts that are no longer active. An outdated letter may cause more confusion than no letter at all.
 A gift of clarity
For you, in the here and now, a letter provides the peace of mind that comes from knowing that you’ve covered all your bases and done everything in your power to establish stability rather than chaos in a situation in which otherwise you will be completely powerless. 
 For those who live on after you are gone, an I Love You Letter bestows the gift of clarity. And when your loved ones are forced to scramble to figure out the basics, there won’t be the sort of questions about finances and bequests that can sometimes, in moments of stress and emotion, boil over into arguments. There won’t be long, exhausting sessions sifting through drawers and boxes and under the bed for that single piece of paper with that one account number. There won’t be struggles to remember the foggy details of a long ago conversation about “What if…?”
 Instead, they’ll have more time to come to terms with their loss and begin the mourning process — fully understanding they can do so because of an act of foresight and love you undertook while there was still time.

Friday, February 10, 2017

Autism: Brain Stem & Aggression Connection Really Hit Home for This Mom!!!

I just read about new research connecting the size of an individuals brain stem to autism-related aggression. This could explain why after years of behavioral therapy we have massively reduced Nick's aggression, but it's NOT gone. 

I'm always trying to explain to people who interact act with Nick that you have to help Nick be proactive in deescalating himself, because once he gets upset it's only going to escalate, and it could take minutes, hours or even days for him to come back to baseline. This connection speaks to so much in Nicholas. I'm like "Wow".


I'm sending this to his neurologist right now. You may want to do the same.

New research from BYU's autism experts is providing clues into the link between aggression and autism -- clues the team hopes will eventually lead to more effective intervention.  
In the study, published in Research in Autism Spectrum Disorders, researchers report an inverse correlation between aggression and brain stem volume in children with autism: the smaller the brain stem, the greater the likelihood of aggression.
The finding, though preliminary, is significant in part because "the brain stem is really involved in autonomic activities -- breathing, heart rate, staying awake -- so this is evidence that there's something core and basic, this connection between aggression and autism," said coauthor and BYU clinical psychology Ph.D. student Kevin Stephenson.
For the project, the team examined MRI images from two groups of children with autism: one that exhibited problematic levels of aggression and one that didn't. Study coauthor Terisa Gabrielsen, a BYU assistant professor of school psychology, said identifying the brain stem as having at least a partial involvement in aggression helps lay a foundation for better treatment. "If we know what part of the brain is different and what function that part of the brain controls, that can give us some clues into what we can do in the way of intervention," she said.
Coauthor and BYU psychology professor Mikle South added, "Once the body arousal in a child is too much -- the heart is beating, the hands are clenched and the body is sweating -- it's too late. Some of these kids, if the brain isn't working as efficiently, they may pass that point of no return sooner. So with behavioral interventions, we try to find out what the trigger is and intervene early before that arousal becomes too much."
BYU's Autism Connect team originated three years ago in BYU's David O. McKay School of Education, though it now includes researchers from other colleges on campus and collaborators beyond BYU. This paper, spearheaded by BYU psychology assistant professor Rebecca Lundwall, had 11 authors from BYU, one from the University of Utah and one from the University of Wisconsin-Madison. The group used data collected from a University of Utah autism study funded by the National Institutes of Health.
Studying aggression is Autism Connect's "overarching agenda," said Gabrielsen, "because it impacts families' quality of life so significantly. If we look long-term at things that affect the family the most, aggression is one of the most disruptive."
South recounted a conversation with the mother of a child he recently diagnosed: to cope with stress, the child often pulled her mother's hair, "so I just have a lot less hair than I used to," she told him. Aggression, South noted, "makes the family dynamic very difficult, the school dynamic very difficult. It's just a particularly difficult type of autism."
In addition to a number of other studies planned or in process, the team is interested in exploring further how the brain stem is connected functionally to other areas of the brain, "because usually the brain doesn't work from just one area; it's a network of areas that all work together," Stephenson said. "So if one area is disrupted, it's likely that other areas are disrupted as well."

Story Source:
Materials provided by Brigham Young UniversityNote: Content may be edited for style and length.

Journal Reference:
  1. Rebecca A. Lundwall, Kevin G. Stephenson, E. Shannon Neeley-Tass, Jonathan C. Cox, Mikle South, Erin D. Bigler, Emily Anderberg, Molly D. Prigge, Blake D. Hansen, Janet E. Lainhart, Ryan O. Kellems, Jo Ann Petrie, Terisa P. Gabrielsen. Relationship between brain stem volume and aggression in children diagnosed with autism spectrum disorderResearch in Autism Spectrum Disorders, 2017; 34: 44 DOI: 10.1016/j.rasd.2016.12.001

Wednesday, February 8, 2017

Gut Microbe Study May Lead to Potential Autism Treatment

If your child with autism has had gut issues this is a must read that spells progress. Anyone who's read this blog knows Nick had gut issues before he had ANY signs of autism and that autism is an autoimmune illness. I've always known his gut was connected to his autism. I've always felt that his gut issues triggered his autism. However, few Dr.'s, with the exception of Dr. Jacqulyn McCandless, ever provided Nick any relief.   If anyone out there is doing this treatment, please comment and let me know.
Donna 


New gut microbe study may lead to potential autism treatment

Scientists look to gut microbes for a possible new treatment for autism.
By Amy Wallace  
Jan. 23 (UPI) -- Researchers at Arizona State University have found improved autism symptoms in participants who were given medications to treat gut microbes.
The research team of scientists from Arizona State, Northern Arizona University, Ohio State University and the University of Minnesota, studied 18 people ages 7 to 16 with autism spectrum disorders for 10 weeks.
Add caption
Study participants were given a treatment of antibiotics, a bowel cleanse, and daily fecal microbial transplants over an eight-week period.
The study showed an average of 80 percent improvement in gastrointestinal symptoms common in people with autism and a 20 to 25 percent improvement in certain autism behaviors including social skills and sleep habits.
"The results were very compelling," James Adams, ASU president's professor of materials science and engineering and study author, said in a press release. "We completed a Phase 1 trial demonstrating safety and efficacy, but recommending such treatment and bringing it to market requires Phase 2 and Phase 3 trials. We look forward to continuing research on this treatment method with a larger, placebo-controlled trial in the future."
The fecal microbial transplant transfers live gut bacteria from a healthy donor and contains roughly 1,000 different species of gut bacteria that act as probiotics.
"We saw a big increase in microbe diversity and a big increase in certain bacteria, especially Prevotella, which we previously found was low in children with autism spectrum disorders," Dae-Wook Kang, researcher at Biodesign Swette Center for Environmental Biotechnology and co-author of the study, said in a press release.
Researchers stressed the need for further research and a placebo-controlled trial.
The study was published in Microbiome.

Friday, January 27, 2017

Why Grooming Chart 4 Teens is Hotter than Jennifer Lawrence

Because Nick's personal care should never be the reason people - including hot girls!- shun or make fun of him! 


This is one chart I use that works.  He's got it down now, all I do is say "Checklist"

Feel Free to print and share!

Monday, January 23, 2017

The Single Most Important Thing You Need To Know About The Womens March


Women March Downtown Los Angeles

Taxation without representation. Today women make up 51% of the U.S. population and ONLY 19% of congress - this is taxation without representation. 



The march was an uplifting event in support of women and women's rights and issues of importance to women. The numbers of women in attendance proved women feel marginalized in today's America and are deeply concerned about their rights in the future. And that is why women showed up by the hundreds of thousands all around the world, to demand to be heard!

Secondarily, the natural consequence of being for something is rejection of anyone or anything real or perceived that would seek to remove, violate, or minimize those rights as seen by each unique individual in attendance. As a minority, a woman, a mom, a daughter, a sister, a business owner, a working mom, a friend of women and the mom of a child with disabilities I was there because women have to be represented in America. Today women make up 51% of the U.S. population and ONLY 19% of congress - this is taxation without representation.  This is why I stayed up and knitted pink hats, took my kids, and fought all of the transportation challenges of the day. So glad I got to be there and showed my daughter what democracy looks like in the USA. God Bless America!
So happy to be there with my children and friends




Friday, January 20, 2017

White House Website Just Scrubbed of LGBT, Climate Change, Healthcare and Civil Rights Mentions


White House Website Scrubbed of LGBT, Climate Change, Healthcare and Civil Rights Mentions

All of the Obama administration's web content on LGBT, Healthcare, Civil Rights, and climate change are no more.  The pages have been archived and deleted as part of the Trump transition plan.  Were millions of Americans, affordable healthcare, US history and Climate change just erased? 

For reference, here is what the website looked like during Obama's last days in office:
 


And here is what the updated version looks like:

  
Obviously, there will be a transition period and time for the new administration to shape policy, but ......why this? Signals a stark difference in attitude



Thursday, January 19, 2017

Teachers Call Trumps Billionaire Education Secretary Nominee Public Education Enemy #1


Trump nominee for Education Secretary faces fierce criticism from teachers unions that she is working against public education. 

This belief was reinforced when billionaire Betsy DeVos - dubbed public school enemy # 1 -  refused to answer important direct questions critical to people with limited financial resources and those with disabilities. And perhaps most surprising response came when questioned by Senator Chris Murphy of Connecticut the safety of our children in school. Her response on having guns in schools; guns in schools could 'protect from potential grizzlies' 

When asked does she agree that schools who receive federal funding be held to the federal law? Specifically of IDEA (Individuals with disabilities act), bullying and violence? She was nonresponsive and when pushed,  finally said she would leave bullying to the states and she never responded to the question on IDEA.  When asked if vouchers - a program she has championed - would be made available to children enrolled in both special education and general education, she did not respond, rather she skirted the question and referred to a scholarship program in Florida. 

My question now is, how does someone seeking the highest education post in the United States, and a critical post for the future of this country not have a response to these legal, ethical and moral questions?

Asked outright by Sen. Bernie Sanders of Vermont whether she got the job because of her family's political contributions, DeVos said: "As a matter of fact I do think that there would be that possibility. I have worked very hard on behalf of parents and children for the last almost 30 years."
On tuition-free public colleges and universities, DeVos said: "I think we also have to consider the fact that there is nothing in life that is truly free. Somebody is going to pay for it."
She skirted Sanders' question on whether she would support making childcare free or much more affordable for low-income families as is the case in many countries, saying only that she felt strongly about "parents having opportunities for childcare for their children."  
"But it's not a question of opportunity," Sanders fired back, raising his voice. "It's a question of being able to afford it!"
Responding to fierce criticism from teachers unions that she is working against public education, DeVos told the committee that she would be "a strong advocate for great public schools."
"But," she added, "if a school is troubled, or unsafe, or not a good fit for a child — perhaps they have a special need that is going unmet — we should support a parent's right to enroll their child in a high-quality alternative."
Ethics and morality play a role in education, and it seems to me Ms. DeVos is unclear on her position when it comes to those less fortunate then herself. 

Thursday, January 5, 2017

Judge States "Boys will be Boys" As Justification for Rape & Assault of Special Needs Student

Not 1, or 10 but 30 Witnesses confirmed this special needs teen was assaulted. 

If you read this and you're as upset as I am, not just as a mom of a person with special needs, but as a person who believes in justice and human rights, then, please....



On October 22, 2015 a mentally disabled, African American high school student was sexually assaulted by his classmates in a nearly all white Dietrich High School in Idaho. John Howard, 18, Tanner Ward, 17, and one other unidentified member of the football team lured the victim into a school locker room, promising him hugs, stripped him, forcefully inserted a clothes hanger into his rectum, then kicked it deeper into his rectum — causing internal injuries.
When this case was initially reported, and it was announced that John Howard was being charged with felony rape, the possible penalties were as severe as life in prison. It seemed like some semblance of justice was imminent. The school superintendent interviewed 30 witnesses and confirmed that the teen was sexually assaulted. Prosecutors agreed with their investigation — which also determined that the victim was also called “Kool-Aid,” “chicken eater,” “watermelon,” and even “n----r” by students at the school.
In spite of all of this evidence, this week John Howard was given the break of his life. Instead of getting life in prison for what he did, he won’t be going to jail for 10 years or five years or a year or six months or even a day. Instead, he’s getting two years of probation and 300 hours of community service. With good behavior, the judge said his record could be expunged. He’ll also be allowed to do his community service in his new home in Texas where his family peacefully relocated.
Judges in Idaho can reject plea deals if the proposed reduced charges and sentencing does not match the crime. It is disturbing that these criminals are walking our streets. Mental health services were not addressed as they should have been mandated. It is not normal to shove a hanger up another person's rectum. This isn't a case of "boys will be boys" yet the sentence depicts that cultural attitude. Please assist us in removing Judge Randy Stoker today by signing our petition. 

Friday, December 9, 2016

One Way Autism Genetic Testing Can Help You LIve a Better LIfe

Thank you all for continuing to log into Autismdaybyday for the past 6 months, while I've been quite. All of the loss in our family - my mom, our dog Shadow and my daughters 13 year old reptile - left me with nothing to say. I'm still a bit numb and speechless, and at the same time I can feel my voice coming back as I come to grips with our new normal.

Nonetheless, as all you mom's know, life and it's demands don't stop, no matter what. Nick still wakes up in the night, he still has to be on the bus at 6:30 am he still needs 24/7 care and even though I've not been emotionally fully present, life had to go on, so we've been busy not the less.

On of my busy things was getting a new genetic test for Nick. The last time he was tested was just after diagnosis. The test didn't show anything, and it was my hope that with all we know now the test might reveal a little more.  Well, I was wrong. He just did the microarray genetic test that looks for chromosomal abnormalities, and it came back negative. Which tells me we are doing so much but still know so little. It's good to know Nick has no chromosome mutations, however, it would be better to have gotten some understanding as to why my precious child has autism, or shall I say why any of our children have autism.

But, it's not over yet. We will move on to the next test which is more detailed and unlike the first test which typically does not reveal anything about autism, more in-depth testing has been successful in providing insight when the child has a co-morbid condition, and in this case with Nick's Epilepsy. This is the one way Autism Genetic Testing can help people live a better life, today. Successful identification makes it possible to select the drugs that will be the most successful in treatment, which may not be a cure but I would appreciate Nick only having to take medication that makes a difference.

Still when all is said and done nothing much has really changed since Nick was first tested 15 years ago. The tools are a little better, and yes they have a bit more knowledge overall, but when it comes to taking that knowledge and directly helping out kids; when we get there nobody knows.



 



Monday, September 26, 2016

La Vie En BLUE Fashion Gala - Autism Speaks Southern California

For anyone who loves fashion, or if you're just looking to have an amazing time this week and at the same time raise money for a great cause, check this out....

And here is a link to the information;  La Vie En BLUE Fashion Gala - Autism Speaks Southern California

Cheers,
Donna