Friday, April 21, 2017

How Hollywood Got Autism Awareness Month All Wrong…

I am so grateful for every person who used their platform to bring awareness to autism. Awareness was the first step to improving the lives of individuals and families impacted by autism. I fought for awareness and now it's time for a new verb.

This is not a dis on anyone or anything, it’s just I've been living with this same message for 17 years. And, as I was thinking what to say for Autism Awareness month?  What needs to be said? What would make a difference? I just kept coming up blank, then it hit me “It’s not about awareness anymore”.  We are aware now!  We have made progress and it’s time to get a new slogan and new mission that changes the lives of all the people our society is now “Aware” of.   And I hope Hollywood will get on board and embrace a new campaign.Let's face it, now we need to be about action, next steps. Maybe we begin with a new slogan; Autism Inclusion Month,  or Autism Action Month, or Autism Support Month.



I’ve been on this journey for 17 years now, much of which is documented in this blog.  If you are one of the people who have read this blog through the years you know it begins with my testimony to the California Senate Blue Ribbon Commission when I shared how having a young child with autism was a nightmare families could not wake from.  Getting an early diagnosis was almost impossible as most pediatricians did not know the signs, and if you could not afford the $3,500 private developmental pediatricians wanted for assessments you were probably flat out of luck.  Then if you were fortunate enough to be told your child does have autism “A permanent lifelong disability for which there is no known cause of cure” they just sent you home to sort things out.  Unlike any other major illness or disability where families are embraced by the system and provided with protocols of care and resource’s families living with autism were abandoned by the system.  With no skills or tools families were just sent home to care their child – who typically required 24/7 support, cope with their grief and do the full-time job of trying to navigate complicated systems of care to find hope!    A devastating reality resulting in a 86% divorce rate for families, isolation, depression and financial ruin because the needs of an autistic child were so intensive parents could not work and care for their child.

This was the unimaginable fate of so many families due to lack of awareness.  But as awareness improved and 1 in every 64 children had a diagnosis of autism, things changed and today most people know about autism.  The result physicians have been trained, therapies are available, states have funds for early diagnosis and intervention.  A great accomplishment!  And now it’s time to move on.

Today most funds for autism are earmarked for early intervention, doing little for those individuals with autism who are now in middle school, high school, and aging out of the system.  We have done little to improve our social settings to include families and individuals with autism. Today as I think about Nick’s upcoming birthday, yep he’s an April kiddo born in Autism Awareness Month!  I am not optimistic about his future, in fact, I’m the opposite.  I am scared for my son and his sister who will inherit the burden of care.  And this is how I feel as the parent of a kiddo who has made incredible strides in his independence as a result of early intervention.

17 years into this diagnosis we live in the social isolation today, as we did when he was diagnosed. This year like all the other years, he has not be invited to any typical child’s birthday party and his birthday party will be attended by adults and perhaps a few others on the spectrum.   We still go into the community and people pretend not to see us, or they look at Nick in fear when he makes noises and jumps suddenly.  But today my most crushing reality is once Nick ages out of the school system – unlike his typical school peers who will go on to jobs, vocational programs, colleges or universities – there are few viable options.  The image of “Wall walkers” comes to mind. Special needs individuals being driven around town in white vans making mindless trips to the mall, the 99 cent store, maybe Target.  Or for a treat a trip to McDonald's where they are all seated away from the other customers who are uncomfortable or a theme park where they connected by matching shirts or string that attach them like cut out dolls, dressed in clothes that make them look unloved and allowed to wear toddler hats.  That’s what families have to look forward to after years of “Awareness” 

So, yes awareness have improved. Early intervention is funded. Kids are being diagnosed and families are being lead to believe the future will be better.  I’m here to say, that is perhaps the cruelest part of this whole journey; to work so hard for years expecting “better” to find that while your child was growing up, and you were doing all you knew to do, the system was not keeping up with you and one day you would end up right back where you started, alone with a young adult who still needs 24/7 care and nowhere to go.  

That’s reality, and in some ways, it’s a more crushing blow than the first, because back then in the there was still hope.  And as a society, we were still more forgiving of an adorable autistic toddler, no matter how inappropriate his behavior, than of an autistic adult.  
That’s why it’s time to move on and work on directly impacting the lives of families living with autism, beyond ages 1-5.  It’s time for “Autism Inclusion Month” and just like awareness it begins in our communities, it begins with us, simple kindness something like this.
Let’s start an inclusion revolution. 

Here are a few ideas.

When you see an individual with autism – Say hi, even if they don’t say hi back.
Invite families you know who are living with autism to your parties, to your homes for dinner.
Help parents who are caring for an individual with autism; drop off a meal, a Starbucks, a bottle of wine.

Invite a mom who is caring for her child with autism over for a cup of tea,  volunteer to run an errand or any gesture of kindness you would give to any neighbor or friend in need.

Then for those of us who are the ones living with autism, we need Autism Action Month. A month where as a community we come together to push the bar forward.  A month where we unite in large numbers, make our voices heard, and advocate now for system change including programs and funding that will support our children after Highschool and insure there are supports in place for the inevitable when we are no longer here to care for them.

Wednesday, April 19, 2017

This is Why We Never Give Up! We Live For Moments Like This!

There is nothing better than the days when your children - who what we want most is for them to grow up to be healthy, happy and as good people - show you how amazing they are and how much they love you!  This birthday was that for me. My wonderful brilliant Evyn with whom I have the most amazing and sometimes challenging relationship ever, was so kind, supportive and loving all week and she topped off my birthday with taking me to dinner, and giving me a gift card to treat myself to a mani-pedi! She spent $100 on me, which had been gifted to her, quite a  big deal for my unemployed daughter.

Then came Nick, who played and sang Happy Birthday to me on the piano. He only recently began taking lessons, and I don't know which of us was prouder as he played for mom!




This is why we never give up, we live for days like this. Thank you God!!!




Here's How Secretary of Education, DeVos will Destroy Special Needs Programs

One of Betsy DeVos' favorite programs makes special-needs kids give up federal benefits

·         Writer: Chris Weller

School-voucher programs — systems in which public funds are diverted to help kids attend private schools — are contentious for a number of reasons.
Secretary of Education Betsy DeVos has been a vocal advocate for voucher programs, but critics say they can drain funds from public schools, increase rates of segregation, and, according to some research, offer few actual benefits to the students who use them.
For parents, vouchers create a more immediate dilemma: In many states, special-needs kids who use vouchers must surrender the federal protections afforded to them by the Individuals With Disabilities Education Act (IDEA).
These benefits include certain legal protections if a child acts out in school, a guarantee to receive an education on par with a public-school student, and protections regarding the teacher's qualifications.
It's a paradox that often eliminates the desire to use the voucher, and one that sees many students returning to public school within a few years, according to the New York Times.
"The private schools are not breaking the law," special-education lawyer Julie Weatherly told the Times. In several states, including Colorado, Arizona, Mississippi, and Oklahoma, private schools are free to make it a condition of attending the school that parents and kids must waive their federal rights.
In other states, schools are free to decide for themselves, as the law makes no mention one way or another.
Secretary DeVos has held up school vouchers as an example of "school choice," or the ability for parents to pluck their kids from a public school and drop them in a private or home school. On several occasions, she has compared the value of picking schools in a free market to the luxury of choosing Uber or Lyft over a taxi.
The laws regarding special-needs vouchers may signal a roadblock in making education more like a private good.
In Wisconsin, for example, these vouchers cost public school districts $2.4 million in state aid. The money helped fund 202 students with disabilities to attend private schools. Critics of the Wisconsin voucher program, such as the family coalition Stop Special Needs Vouchers, arguethe laws leave private schools free to ignore IDEA's protections, which makes voucher programs less effective yet still costly to taxpayers and possibly detrimental to public schools.
Proponents of vouchers make similar arguments as DeVos and President Trump. In the most conventional view, vouchers give parents the freedom to place their children where they'll learn best. Advocates say the long-term effect is a system in which kids are sorted more effectively, with fewer wasted costs.
Mark Dynarski, an education researcher and voucher expert, says vouchers are still a fairly minor force in American education. On a yearly basis, waves of kids move in and out of a given public school due to changes of address — and they do so at rates far exceeding those of vouchers.
"Given the kinds of waves happening inside schools," Dynarski recently told Business Insider, "it's hard to see how vouchers actually cause the school to stop what they're doing and say, 'We need a plan to respond.'"


Wednesday, March 29, 2017

Mental Disorders in Children from 4-19 are More Common Than You Think - 1st symptoms and how you can discover and treat them early.

When you have a child with autism, it's easy to overlook milder behavior issues in the siblings we've labeled as typical.  It is also easy to think a sibling's challenging behaviors come out of the challenges of being the sibling to a special needs brother or sister.

Looking at an infographic this morning I was reminded how common it is for multiple siblings to be on the spectrum or suffer from other mental disorders, even when they are far less obvious than autism.

Here's the infographic...don't know about you, but it hits home with me.



Thursday, March 23, 2017

Repeal of ACA - Best Bipartisan Update and Explanation of AHCA


I am closely watching the federal response to President Trumps proposed repeal of the ACA, Affordable Care Act aka Obama Care". I am watching not just for myself, but because as a parent of an individual with developmental disabilities I know repealing the ACA will have a negative short-term and a potentially catastrophic longterm impact on my family.  

That said, below is the BEST bipartisan overview of where we are today with ACA I've read not just for people with developmental disabilities who receive services - but for anyone seeking to get a grasp on what is happening NOW.



Major developments and their effect on developmental services

The AHCA vote and the President's Budget
The House of Representatives is hours away from voting on the American Health Care Act (AHCA), the Republican proposal to repeal and replace the Affordable Care Act (ACA or Obamacare). The vote looks to be extremely close. Failure would hurt the ability of House Republicans and President Trump to advance other policy goals. But even if it does pass, it will face different challenges in the Senate. Meanwhile, President Trump has released his draft Budget, which proposes a range of deep cuts, particular to human services.


AHCA Vote
At this very instant, leading Republicans in the House of Representatives, as well as members of the Trump administration, are putting intense pressure on members of Congress to vote to pass the AHCA. A vote will be held some time on Thursday, March 23rd, and livestreamed online.

Currently, there are 193 Democrats (expected to vote against it) and 5 vacancies in Congress. This means 216 "yes" votes are need for the bill to pass. However, many members of the House Freedom Caucus (Tea Party-related) are still opposed to it, arguing it neither repeals Obamacare nor reduces premiums. Several moderate Republicans have also expressed concern about its impact on their districts.

As of 9:00pm Pacific (midnight Eastern) on the 22nd, the New York Times is estimating the following count:
  • 149 - Support the bill or lean yes
  • 44 - Undecided or unclear
  • 15 - Concerns or lean no
  • 29 - No
The Washington Post reports similar numbers, but with 36 anticipated "No" votes as of 10:16am (March 23). Under any circumstance, if more than 22 Republicans vote against the bill, it will fail.

Were it to pass and become law, in its current form, a preliminary analysis by the California Department of Health Care Services suggests that by 2027, the state would lose $24.3 billion annually in federal funding.


The Budget
Separately, President Trump recently released his budget blueprint, titled "America First: A Budget Blueprint to Make America Great Again." It proposes double-digits cuts to Health and Human Services, as well as Housing and Urban Development (HUD). It also calls for the wholesale elimination of numerous programs, such as HUD's Community Development Block Grant, and the Corporation for National and Community Service - which includes the Senior Companion/Foster Grandparent Program.

While these cuts could have a severe impact on the developmental disabilities community, this is only the first step in the process (see this flowchart, too).

The Process
  1. The President drafts a "budget request" that outlines his priorities, and submits it in February. This is not the full budget; it is a blueprint. 
  2. The House and Senate hold hearings, develop their own "budget resolutions" that describe various general spending limits and priorities, and pass those resolutions in April.
  3. Following the basic instructions in those resolutions, the House and Senate spend the summer each developing 12 "appropriations bills" that get down to actual dollars to be spent. The two houses have to make sure their final bills are identical before the pass them in September.
  4. The President signs the appropriations bills by October, which combine to make up "the budget."
The Problems
As soon as President Trump issued his budget request, Democrats and manyRepublicans started to push back. Republican Senator Lindsay Graham called it "dead on arrival." Republican members of Congress also argued against the deep cuts to social services. One would do well to remember the old adage (oft-quoted and rarely sourced) that the president proposes, and the Legislature disposes.

Published by the Association of Regional Centers California (ARCA)

Tuesday, March 7, 2017

9 Reasons Autism and Basketball are Sweeter than Christmas Morning! And worth the wait!

9 is the number of years I have been exposing Nick to basketball and now in year 10 he's nailing it! Gooooooooooo Nick!!!

I watched Nick go from uninterested, to being afraid of the ball to now dribbling the ball up court and making the shot! 



So worth the wait. Never give up :) 

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!