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Autism Sucks: And Then I Die.

 

Mia and Mom!

By Kim Stagliano

It's been a while since I've spooned up a goodly dose of medicine to you.  Today I ask you to open wide, say ahhh, bend over and cough all at once.

Last week I was in Dallas, Texas, speaking to a wonderful group called Metrocare that provides services to low income families with children who have developmental disabilities.  I flew in a airplane all by myself. I was picked up at the airport and whisked to my luxury accommodations in a car that costs more than my annual income. I was ensconced in a room with terry robes and slippers (in case I had the desire for a massage or other treatment in the spa downstairs) and a mini-bar (didn't touch it) and a bathtub my Bella would have sworn was her very own indoor pool.   I was living large, my friends.   I was even.... on TV:

Yesterday I picked up this (below) at Probate Court in my town. What is it? It's a form that enables my husband Mark and me to take away our daughter Mia's adult rights when she turns 18 in December.  You read that correctly.

 Probate papers

We have to petition a judge to take away her rights as an adult so that we can make her medical, legal Mia before regression and financial decisions because thanks to her autism, she is not able to make safe choices for herself.  She was a tot who could count and read before two.  And THAT my friends is the reality of autism for thousands upon thousands of American families.  It's like Alzheimer's for a lifetime in terms of safety, care and needing supervision. Except instead of an exhausted adult taking care of the "sandwich" of parents and kids for a few years or even decade of Alzheimer's, it's exhausted parents taking care of their adult children in the endless buffet generation of autism.  Mark and I expect to take care of our girls until the day we die. 

In our hearts we are proud to stand by them come hell or high water. We are mentally prepared. We will never be financially prepared.  I train in a dojo up to 6 days week to stay physically prepared.   We will never desert our kids.  At the same time, we should never have been placed in this position. And more of us need to scream that the floodgates are officially open and the high water is coming.  Fast.

There's a spot on the form for "standby guardian."  That means the next person in line after Mark and I die.  D.I.E.  Whom shall I appoint? Her sister Gianna? Nope, her petition date is in 2014.  Her sister Isabella? Nope. Her petition date is in 2018. Do you have a standby guardian who can care for your child forever?

Big girl pantiesI held my emotions in check as I stood in the doorway of the Probate Court judge and asked for the paperwork. When the kindly town hall staff member said to me, "We're processing paperwork for two other ---" I lost it. Tears slid down my cheeks. "I know," I said. And I told her the names of the boy and girl who are turning 18 within days of Mia. We celebrated their 16 birthdays together at Bounce U.  Three Moms, three Dads - all standing around in our socks in a jumping castle joint laughing through tears about how we should have been at the local car dealer negotiating a bulk discount on Honda Civics.

A favorite waitress from a local restaurant whispered in my ear a couple of weeks ago, "My son was just diagnosed with autism."  He has seizures and severe aggression.   He's not even three. She deserves more than what we "old timers" have put up with for so long.  We need treatment. We need cure. We need prevention.  Look, if you do not want prevention, treatment or cure for yourself or your own child - that is your right. I respect your point of view and I will be sure to fight so that you can have an exemption to any and all of it.  (Insert irony emoticon here.)  

To those parents who have forged the way before me, I say "thank you." Barbara Fischkin and Chantal Sicle-Kira - and so many others who shine the light on a dark path for us.  I have only harsh words for those in the media, government, doctors' offices, universities and on blogs and sites  who'd have us believe we are bad parents for wanting to wipe away our children's autism to reveal the child underneath. Who think we are simply ignoring the good and the gifts of autism.   My girls are gifts. My girls are good. Their autism is a noose around their necks. I've no patience for those who might tisk tisk and beg for acceptance and placate donors with "awareness" and fund ever more genetics studies that lead to nowhere while putting up barricades for those of us who will always have hope for the basic goals of every other serious diagnosis in America. Treatment. Prevention. Cure.  Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta.

I cherish my Mia. My firstborn. A child who was not born with autism in 1994 and who at 18 will become a legal child for the rest of her life.

Mia infant

 

 

 

 

Houes of Cards 160Kim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 



Comments

Cynthia Cournoyer

So very important to go through the legal hoops to maintain guardianship. If you haven't done it yet, you should. The standard thought today is to give "disabled adults" MORE rights. There is a leaning toward allowing these adults with minds of children, to make decisions that are absolutely not in their best interest and dangerous. Society says, at the magic age of 18, you can make your own decisions. Even if you are severely handicapped. My state is going through and making sure that this population is not hampered by their care providers. The trend does not favor the parent who has the best interest of the person in mind.

John Kirton

I understand Kim, all too well. Our three oldest with ASD will probably be just fine. They'll have their challenges of course, but at least they can communicate with the world around them.

Unfortunately for Sarah and Ammon, aged 14 and 12 respectively, that is not the case. Unfortunately not like you, I feel I have deserted them. They have been living with foster parents for over four years now. They are fantastic people and much more well-off financially been we have ever been. But I don't know how long that may last. I'm not sure what happened to them once they reach 18 years old.

And I probably will have a lot less to say about it after Robin and I are divorced. Yes it's happening to us too. I had hoped to avoid all this by putting our story out there back in 2008. As I'm sure you remember.

But promised help from organizations quickly materialized and then just as quickly evaporated. The producers from the old Extreme Home Makeover program talked with us briefly, but no house.

I attempted many, many times in vain to come up with ideas to improve our financial situation. Unfortunately the many many hours spent in that pursuit became the major cause of our pending divorce I believe.

But I haven't given up total hope. I will continue to work on ways to improve the financial situation for families with adult autism members. Mine included.

Thank you for your insights, determination and dedication to the cause. Please let me know if you need my help in any way, I'll be glad to do all that I can.

John Kirton
Dad of Six Autistic Kids

casey

She is so beautiful! Those eyes. There are no words. But thank you for blazing the trail for us.
Love!

Raymond Gallup


By law if a parent doesn't establish guardianship of their child with autism/or a mental disability when they become an adult at age 18 (not sure if some states have age 21, but the sooner the better), then the state essentially becomes the guardian automatically. We knew about this years ago and one parent didn't want to establish that since they felt as a parent that automatically was granted to them. This parent wanted to fight the state on this but I'm sure he wasn't successful. Unfortunately, the law is the law.

Case in point.............

Guardianship

Many parents assume that they are automatically the guardian for their child, even though their child is older than age 18. That just isn’t the case, however. To establish guardianship it is necessary to obtain a court order.

Per...........

http://autismlawcenter.com/practice-areas/guardianship/

Raymond Gallup


Has any parent ever gone to a funeral parlor to make funeral arrangements for the future for their son/daughter with autism? Our wife and I did that a couple of years back and it was a very emotional time for us. Even today I think about that and it is tough dealing with what we did.

The only thing I can think that is worse than that is actually making arrangements for a young adult/child that has died before the parents have.

JPower

I do not walk in your shoes so I will never truly understand, but I am moved to tears by your story. Thank you for sharing it.

Donna L. has the right idea.

Raymond Gallup


Before Eric reached 18 years old we made arrangements with a living trust about Eric and that we as parents are his guardians (not the state). We also wrote that in the event of my death and my wife that my wife's sister would be guardian until Julie, our daughter reached legal age. She is now legal age at 23 years old being 24 years old in October.

By the way the state of NJ has burial funds for Eric on the event of his death. Going to a local funeral parlor making "arrangements" for Eric was the toughest thing my wife and I ever did. Just think about that!!! Making funeral arrangements for your young adult son/daughter while he/she is still alive, that is extremely tough!!!!

On another note, the Autism figures for 2011 just came out the other day from the US Department of Education and I added them to the chart that goes back to 1994. The figures have jumped upwards substantially from 2010. I plan on writing a letter to the Social Security Administration in January 2013 to get the figures for autism and SSI for years 2011 and 2012.

From [email protected] as an Excel attachment, below

https://www.ideadata.org/PartBChildCount.asp


Source:US Department of Education
Yearly increase in the number of children with autism age 6-21 in US Schools Since DSM IV (1994 to present)


School Year / Students / Increase
1994 22,780
1995 28,813 6,033
1996 34,082 5,269
1997 42,487 8,405
1998 53,561 11,074
1999 65,391 11,830
2000 78,717 13,326
2001 97,847 19,130
2002 118,603 20,756
2003 140,920 22,317
2004 166,302 25,382
2005 193,481 27,179
2006 224,415 30,934
2007 258,095 33,680
2008 294,302 36,207
2009 335,199 40,897
2010 369,664 34,465
2011 406,957 37,293

Source:US Department of Education
Increase in the number of children with autism Age 3-5
(2000 to present)

School Year / Students / Increase
2000 15,581
2001 17,032 1,451
2002 19,017 1,985
2003 22,724 3,707
2004 25,902 3,178
2005 30,276 4,374
2006 35,071 4,795
2007 39,434 4,363
2008 45,166 5,732
2009 47,602 2,436
2010 49,213 1,611
2011 51,252 2,039

Source:Social Security Administration
COUNTS FOR ADULTS AND CHILDREN
RECEIVING SSI BENEFITS
FOR AUTISTIC & OTHER PERVASIVE DEVELOPMENT DISORDERS
AS OF DECEMBER IN 2002 - 2010



Year /Children 21 and under/Adults/All Recipients

2002 38,324 7,360 45,684
2003 44,076 9,282 53,358
2004 51,581 11,450 63,031
2005 59,479 13,647 73,126
2006 68,050 16,190 84,240
2007 76,448 19,139 95,587
2008 88,734 22,993 111,727
2009 94,725 34,988 129,713
2010 103,700 41,462 145,162

 Michelle

(((Kim)))

No words.

Jeanie

I do not have any children with Autism, but I am passionate about healthy living and have many friends who do have children in the sprectrum. Watch "Genetic Roulette," a movie about Monsanto and their GMO foods causing many, many illnesses and conditions like autism. We have to stand up and stop allowing big companies and gov't to poison us. We can be the change if we all refuse to buy these fake foods and all unhealthy processed foods. I have also read a lot about antibiotics killing the natural and necessary bacterial flora of mothers' intestines .........which is what is passed onto children at birth....children without properly balance intestinal flora have compromised immune sytems ..........they are then are bombarded with multiple vaccines...poisons which their compromised immune systems cannot handle, read more by searching this on mercola.com My heart goes out to all of you who fight this daily fight for your children. Hoping I may have passed on important information.

Cherry Sperlin Misra

Texas Mom, That is such a beautiful story about your son. Please save the paper with his words ; it should someday be placed in a museum of autism.

To all, Its obvious that we all try to think of ways of ending the medical malpractise and making the public aware of the truth. Im just thinking- perhaps we should have focused on a few individuals at the top who were part of decisions that are known. If you were an employee at the CDC would that not make you stop and think- "Gee, I dont want to become another X - under fire by thousands of angry parents." So many people are angry at doctors , who are often themselves victims of vaccines . Can you imagine how many doctors have autistic kids- quite a few to be sure.

michele i.

Beautiful and sad. Which basically sums up life with autism for me.

I love love love my boys. I love the gifts they have given me, the ability to see the most beautiful, precious, amazing things. The true understanding of unconditional love. But I hate the price that they have had to pay for this perspective. I long for them to be who they were meant to be, who they would have been without the toxic vaccine overload to their bodies.

I know you and I both feel the same.

Beautiful piece Kim. Beautiful mom, beautiful girls, beautiful family.

Katie Wright

As always so beautifully said

janhen

It is so terribly sad that this has happened to so many innocent people; parents who trusted that a doctor knew what they were injecting into their baby; doctors who trusted the government who said these vaccines were safe and effective, and so on.
Because of lesser effects on my children I soon soured on vaccines, but know, but for the grace of God, this too could have been our lot. I want to help. I want to make sure that my children have the freedom to refuse vaccines as I did. I want to wake up those around me to the truth that we cannot trust anyone else to do what is best for our children - whether it is a doctor, a school or any government agency. No one else will go through hell or high water to protect our children like we will. To the state planners, our child is just an expendable statistic, the one who had to be sacrificed for the 'greater good'. It is time we called this 'greater good' the 'greatest evil' that it is. And it does not start or stop with vaccines. It is the 'foodlike substances' that have replaced real food, the safety and convenience mindset that has put toxic chemicals in everything we eat, wear and touch, and, most of all, the mindless acceptance of everything "the experts" tell us. We need to stand up and say "the experts are wearing no clothes!" They are lying, shilling for money, and not to be trusted. Sorry for the rant, but it does break my heart that all of this needless pain has befallen so many who were just doing what they thought was best - and that it continues because even when you speak the truth you are called conspiracy theorists and anti-science. I pray that God supply the strength and support that parents of autistic children need. May many who are not in the trenches come along side those who are and do what we can to help. And may we never stop sounding the alarm until it is finally too loud to ignore.

Teresa Conrick

Dear Kim,

I am so with you on this. Been there and done that but the emotions are always fresh. Now I keep getting voter's registration for Meg and the occasional college invites. The agony and anger of being a parent to a severely affected, vaccine injured child. We will not give up on them or the wee ones just opening their eyes.

Love to your beautiful girls.

brenda

I feel for your family. A FB friend shared this will me today..why, I posted starting Price of keeping your disabled child at home with you $225,price of turning them over to the state..ZERO. What's wrong with this picture. Our daughter turns 18 in 15 days...yep, file the papers, supena your child who couldn't even understand what it is and parade them in court. Can't wait till she screams, disrobes and has to go to the bathroom ever 5 minutes due to stress

Carolyn KylesMom

Kim, this is so tragic. I still have hope.

Everybody out there, pray for this:

There are whistleblowers out there who are in high places. Get video of pharma, of CDC officials, admitting that vaccines cause autism, that the ingredients are dangerous, that their only defense is to ridicule us and say we are wrong. If you have the ability to videotape this, to help prove this, you can stop this from happening. I know that there is someone out there having a muppet moment (from the last muppet movie) "Wait--I'm a muppet too--my baby is at risk too" against the greed, and the organizational pride that allows otherwise decent people to suddenly forget who they are and what really matters. It happened with the boy scouts, the Church, and Penn State--all of whom put loyalty to each other and a fear that the truth would destroy them into covering up something rather than facing it, that caused them to value the reputation of an organization over the spectre of more innocent children being harmed. It is some kind of sick pathology, and it seems to happen in a big way over and over in societies where secrecy and a reputation to uphold become paramount to protecing the vulnerable. It is so very hard to believe that anyone would knowingly allow children to suffer like ours do that this very craziness provides protection to the perpetrators and those who deny what they are doing--but it has happened before and it will happen again.

One of our main hopes is for someone to get dramatic proof that the powers that be know this and don't care. Powerful video or powerful audio, or documents--it has to exist. Because it did with tobacco, it did with minihana (a mercury spill outside of Japan in the 50's) . They must discuss this stuff, including their strategies. A whistleblower brought out the truth about tobacco. A whistleblower can bring out the truth about this. This is an amazing travesty and it will stop. If anyone is out there who can be a whistleblower, please do it. I believe i can speak for ageofautism--hand it in to them, they would protect your anonymity. You will stop the tears of future generations of families and begin the process of healing for us now. IF we can force the world to realize the cause of autism there is much, much more hope that we can force the world to discover how to reverse it and fund this reversal. Damn it Kim, your girls deserve to come out of that fog. They are beautiful and brilliant and dear. This is wrong and it has to stop. Because of parents who went before me, I stopped my son's vaccines at 18 months. He is probably going to be okay, though perhaps never who he might have been. But I have extreme gratitude to the parents of older children who spoke up, and I have extreme surivor's guilt as well. God I so want to win the lotto and fund the research that might actually make a difference. . .

Jan

You go Kim!! yes the Autism is a noose around our sweet Andrew's neck and the state is now a noose around ours... We got guardianship of Andrew 6 years ago when he was 20. We put it off for two years until his doctor nagged me into it.
I am in the process of filling out close to 30 pages of paperwork for the yearly guardianship report; they want to know how often we see Andrew and what he does during the day (I can't tell the truth and say rot in a day hab because that would make me a bad guardian) and the balance of the paperwork is for our yearly trip to court because of one of the medications he is taking. Geez we can't be trusted to give him that...
What pisses me off is that I have busted my ass for the past almost 27 years caring for my son. He is my life, non stop 24 / 7.
He has always lived with us, yet the day he turned 18 I became suspect. I have to fill out forms yearly for some judge to look over, and I have to go to court every year to have a judge decide if Andrew can stay on his medication. I have to have his court appointed lawyer come to our home to check on him every year to make sure I am taking care of him.
Autism is horrible it has ruined his life and taken a toll on ours. I am feeling way older than my 54 years these days. Having the state place more stress on me with all of these hoops isn't a way to make life better for our family.

Sheila Ealey

I'm so very sorry Kim. This was truly poignant and heartbreaking. My son is now 13 and everyday I breathe, eat and sleep "autism". I feel as though my husband and I are so consumed with getting him to a better place in hopes that he can be independent until it's taken away from our other children. Shame on this government for allowing this to happen. If this were a man who had a stroke, they would throw resources at it to make sure he had every opportunity to recover and yet they feel no obligation to enforce the basics for our children. God bless you and your family. You're in my prayers.

L,C

We know how much worse it is today than it was 18 years ago. Let's not talk about how much worse it is 18 years from now. Let's not do that.

We need to stop the flow, and we need to stop it now. Because if kids keep flowing into the system the way they are, we might not ever have the resources to get to a solid treatment, or much better than that, a "cure".

If you Kim, and all the rest of the old crew don't like what's going on, then change it. I know you read the "wake-up call". I know you know it's painfully accurate or close to it...... Wake them up. (the old guard) Whether you know it or not your "generation" had'em on the ropes once before.

It's time to go back in for the KO.

It's time, because our government is failing miserably. Approval ratings are at an all time low across the board. It's not just one guy now that the voting public is disgusted with. It's all of'em. Don't wait until things turn around and they're back in the good graces of the American public. NOW is the time, while they're down, to go in and finish them off.(politically) Otherwise there's no telling when the battle could be won in the future, if ever.

Call me crazy if ya want to, but if you think I'm crazy today, wait til you see what the world looks like 18 years from now when it's possibly 1 in 14.(based on current rate of increase) By then you might be too old to fight.

Tre

My heart breaks. All my love.

Lin Wessels

Oh Kim, you brought me to tears. My heart aches so for all of our families. Will it never end? Will the powers that be ne'er care enough to stop harming our future generations and our most valuable resource? I fear they never will. And so we continue to fight and to speak out. Our sincerest love to you and your gorgeous family! Please know how much we care and how hard we are willing to work to affect real change.
XOX,
The Wessels

Some numbers don't lie

As far as I can tell, the powers that be have been so busy constantly redefining (hiding) autism/vaccine injury in the DSMs that they've never bothered to figure out what percentage of the autism boom is low-functioning and will require lifetime care. (The people who don't fit into the high-functioning neurodiversity paradigm.) They have made things exponentially worse by failing to adequately plan and allocate the resources needed for the Mias of the world. Things will become evident soon enough I suppose, but I wonder if there's a way to use these guardianship filings to track an increase in rates over time.

KFuller Yuba City

We stood before the judge when our boy turned 18 and 19. This year he gave us 2 years before we have to go back. Each year the court officer comes to our house and looks into our refrigerator and cupboards and also his closet and dresser drawers to make sure the boy has food and clothing. She must at least look into each room in the house and a gaze into the yard. I know it's for his safety but it still stings.She also calls family members who have not lifted a finger to help us, asking if they think we are fit parents. If they answered any way but...Of Course! I would need bail. Conserving our boy meant he lost the right to vote. Imagine our surprise when he still had to register for the draft. I would love to tell you that it gets easier. I can only say it gets different, not easier. It's time for this to stop. A year from now we will stand in court again. Maybe it will be different?? Maybe they will look at us and know what happened to our son and hundreds of thousands of others.

Robyn

Making robots, fighting wars, genetically modifying food, spraying chemicals into our skies, spending billions to look at Mars...and yet how dare we want to "cure" autism? We're just supposed to revel in its "diversity"? The reality is its hard for most people, parents and child. Not every autistic child is a musical prodigy or able to count Pi to infinity, if that's all it was then we should all be so lucky.

Allie90

Yes, the first time in front of a Judge was not for a traffic ticket with my son, it was just so I can keep making all his life long decisions. I really do not know what the road looks like ahead, and what options or services will be allowed for him.
Education really should not stop, because these kids need a continuing learning team to help guide them, but so far its just falling on parents after 18 yrs old. Can I out live my son?

oneVoice

Summed up well -"An autistic child will become a legal child
for the rest of his/her life". We need to print this out on car stickers and let the world know.
Great work Kim,as always,thank you for your hard work.You have a lot of love in your heart.Yes prevention and eliminating the root causes should be our goal.Taking care
of the kids/adults and families effected also very important.

Gayle

Kim, we also had to take on the role of guardians for our adult son with autism a few years ago. We are all part of the autism epidemic that never should have happened to an entire generation of children who were born normal. I guess, as the others have posted, we all need to live forever!

Samsdad

At 18 my daughter will become a legal child for the rest of her life.

That right there crushed me. Only 6 years away.

Anne McElroy Dachel

I was struck by what the news host in Texas said to Kim,

"It's been no secret ...one of my boys is on the spectrum."

Here's a story from Sept 26, 2012 story from CBS21 in Harrisburg, PA ...
http://www.whptv.com/news/local/story/UPDATE-Interview-with-DPW-Secretary-looks-into-co/_KJarCegikulkWz2EOM4XA.cspx

There we were told, "In the interest of full disclosure, CBS 21’s Sherry Christian has a daughter with autism, so her family will be one of those affected by the co-pays."

For a number of years now we heard, "Everyone knows someone with an autistic child." With the projection that by 2022, the autism rate will be one in every 9 kids, we may soon be asking groups of parents, "Who in the room doesn't have a child with autism?"

Kim on Good Morning Texas: Regarding the epidemic... “There has been a concerted effort across the media to play down the tragedy of the epidemic. These are children who may never live up to what was going to be their full potential and part of my work is to raise that alarm bell, that we need to do more.”

When my son turned 18, eight years ago this month, and we applied for disability, the lady at Social Security said to my husband, “I can’t understand where all these young people with autism are coming from.”

My husband could only say, “Ma’am, get used to it. John is the tip of the ice berg.”

I wonder what that woman is saying to parents today.
I don’t know how anyone could read this without melting into tears---I know I did. Now imagine a million parents across the U.S. talking about the same situation in their lives. When that happens, will people finally ask WHY? Will they refuse to believe this is all better diagnosing? Will they reject the claim that it’s always been like this?

I think so.

The sheer numbers will expose every lie. Hang on folks. That day is fast approaching.

Anne Dachel, Media

Kapoore

Kim,
You are a super hero and I wish your voice were more powerful because so many inexperienced parents don't know how bad things can get. As I have often reported I got lucky having an 80s child who only got an auto-immune disease but even that has its adult issues. I usually drove home from visiting her in college in tears (she had to go locally because she was too dependent in a lot of ways). I remember the black circles under her eyes, her shrunken body, her tonsils full of puss for years on end. She had no friends in college and called me four times a day. She married an abuser who ended up kicking her out of the house onto the street. She would crawl back to him and he would kick her out again because she thought she could never find anyone else. Her life had been filled with rejection by peers. I was her doctor, her best friend, her teacher, and most days the only person in her life. She lived for years on 40 milligrams of adderall to stave off chronic fatique--that is one medical solution to celiac disease. Now she usually calls twice a day but some days she doesn't call. She is much better and I owe it to people such as yourself who were willing to share everything they had tried. And to the brave doctors and researchers who defy the medical police state. So... for some there is a way out of the darkness, and yet for many lining up for the mandated MMR and other toxic vaccines it's just the beginning. They will be writing their own tales of vaccine injuries in the future.

Living the Dream

Kim - powerful as always! Our daughter is just 9 but already we are discussing adulthood. When she was a baby, I remember holding her thinking we would be letting her go before we knew it but we never will. She is in recovery and we're full of hope for her but know that she will likely be with us until we're gone and will need care beyond. Thanks for continuing to blaze the paths and for sharing the journey!

Sue Loring

As a parent of a 27 year old man with autism, I can tell you that progress doesn't stop, just because of a piece of paper making you their guardian. It's harder to achieve, the adult system doesn't have the same protections that you enjoy while on an IEP but with parents who are advocating and fighting to change the system, adults with autism continue to grow, to gain skills and mature. They may always need our help, and it is our job to find stand by guardians who we can teach before we pass way, to be that help when we are gone. Just as we let go of our our other children , we learn to trust and befriend and search out people who will be there in our stead as our children live out their lives. It's not a cure, it's not a miracle ( well it is if you think about it) But it requires us to make realistic plans, and face our own mortality so that our adults with autism have a legacy of caring in place when we can no longer be there for them. Not ideal, but with good planning we can leave our kids reasonably happy for ever after.

This is an empotional sucker punch this 18th bithday. Breathe, smash boards if you need to to dispell the anger, and start thinking about doing all you can to prepare the girls for that future. Talk to other parents who have crossed the line from childhood to adulthood. This is the life our kids got, we can choose to enhance it but we have to let go of "what might have been" and embrace what is. Only then can we move forward.

Wendy

Hi Kim. We are shoulder to shoulder with you. James is 18 now - and when we toured the community college that WON'T allow an aide (provided by us) he was more interested in the student arcade. (Heavy sigh.). Wendy Frye

Carter's Daddy

I never knew how to put it, since I'm lousy with words, but there you go, succinct and informative, just pointed enough to grab their attention, were it written where they will see it.
They don't understand that I will grow old and die taking care of my boy. Not only that, I will work until I die, since the expense of it means there will be no retirement.

Terri Lewis

Kim,

My heart goes out to you and I'm in tears, too.

We (our little family) have not had such a very hard time of it, but I fight--at the cost of being called a "fool" in my own house!--for everyone who comes on this ride--before us, with us, and after us.

My own brother--who knows and understands what happened to his nephew, says to me, "They didn't do it on purpose."

At some level, it was done on purpose.

At another level, it was not on purpose, but our friends, family, doctors (especially doctors), schools, churches, and neighbors have turned away from us.

Be careful, friends and neighbors.

At the rate we are going, this WILL happen to someone you love.

Zenaida Mananquil

My son is now 23 years old and continues to live with me. I live in California and I find that there are a lot of help (financially and physically) for him through the Regional Centers (who contracts with the State)and the State. Personally, it is not always been easy and definitely tiring to care for him as I have been caring for two people (me and him) for the past 23 years. I go to work and come home and I have to attend to two people everyday, however, having a "normal" daughter is helpful and she picks up whenever I can't.

Angus Files

Here! here! Kim! march on ..we take guardianship of our son within the next year..

SHAME ON THE MEDIA , GOVERNMENTS, AND ALL WHO RECEIVE THE SHUT UP MONEY..LAST BUT NOT LEAST PHARMA ...SHAME ON THEM!!

Angus

Lisa B

As always Kim, you hit the nail on the head with this one.

Deborah Z. O'Leary (@REALMOMMA2155)

Kim, I so hear your voice on this. My 17 year old son (who was not born with it) has made great strides towards recovery. Yet, when next July rolls around, we will be doing the same.

Sue S

My son is 14, and we are not far behind you. Unless "Treatment - Prevention - Cure" takes a huge leap forward in the next 4 years, we will be signing the same document. We are blessed with 5 healthy older children, thank God, who love him to the moon and back, but it breaks my heart that they will have to be responsible for him after we are gone. At least they know the vaccine connection, so they may be spared the horror of autism in their own children.

cmo

Great interview Kim ! You deserve a "little day out" once in a while.

Were there any restrictions preset for the interview for what you could NOT talk about... such as... the damn vaccines ???

Beth

Shedding tears now for Mia, her sisters, the whole family and all those living the reality you describe.

I think apt punishment for the myriad people involved in prolonging and fueling the autism tragedy would be to set up govt funded, free care facilities where all the pediatricians, public health officials, pediatric nurses etc who failed to listen to parents will be sentenced to serving volunteer duty. Perhaps such facilities could also be the "standby guardian" after parents pass.

Mary R.

Complete lump in my throat Kim. This is the tsunami that is upon us. . .the day we all knew was coming and no one was listening. Our children are now of legal age, but not of independent abilities. Prevention. Treatment. Cure. Damn right! May I add another--Outrage! Until they feel our outrage they will not get how completely insidious the impact on so many lives.

patricia

Great interview Kim. You make a wonderful advocate for the whole movement of awareness of Autism as an epidemic.
Barry
You ask about a Tshirt with the slogan "Autism awareness> be aware that vaccines cause it". Why not try it? Would "they" dare to challenge you in open court?

Jacky

Kim, can you print your story and send it as a letter to congress, the president, media, etc... ? They need to know the reality of this. So many children and/or adults will be a ward of the state when their parents are no longer around to take care of them. This is a big reality check.

Texas Mom

My son has been recovering from severe autism and at age 8 he finally started speaking again and came back to join us in 'our world.' Today, he is doing great in 6th grade and almost 12. I look around at his classmates with autism and feel guilty. Some are not making progress, have single parents struggling just to get the bills paid, and have no means to get treatment and therapy. My sweet natured son apparently sees this as well, because he wrote a little paragraph recently- "I have autism. I am getting better. I am sad that my friends are not. Why does God let that happen? What can I do for them? I can talk. They remain silent. I pray for them"

Donna L.

AMEN. Trailing behind you by only a couple of years, it is unbelievable to me how we've watched this entire disaster unfold and be ignored and denied in such agonizingly slow motion.
I have to wonder how much closer we would be to Treatment, Prevention and Cure if before an infant's very first round of vaccines, each pediatrician had to sign up as "Standby Guardian."

Benedetta

There are also other things For those with less severe forms of autism or bipolar. Forms that protect those individuals as well.

For instance our kids can't go out and borrow money to buy a car in which they have a poor chance of paying off; without the parent being involved in the process.

Sarah

Great interview Kim. Any opportunity to go on television and hammer home the fact that autism is an epidemic is important since we know we can't rely on the gov't and medical establishment to do so. Thanks for representing us so well.

John Stone

Tragically true Kim,

It has always been the destiny of disability parents that they are not allowed to die, but die anyway. Now, thanks to the denialist incompetence of health officials and industrial greed there are many more of us than ever before.

John

Maurine Meleck

Heartbreaking and I know. Joshua will become an adult in 3 years. Living with an aging--yes, an aging , grandmother and 2 parents out there somewhere who cannot take care of him--I have no idea who can take charge of him when I can't. I am always opened to suggestions. Thanks, Kim
Maurine

Dan E. Burns

Good interview with Carrie McClure. I was surprised and pleased that she asked you about Age of Autism. Have we dipped a toe in the mainstream?

Barry

I agree with everything in your final paragraph,

My son was NOT born this way either. My son suffers from severe vaccines injury, that was inflicted by his doctor before he was 21 months old. Autism is the term that doctors invented, to shift the blame (.. and guilt!) from themselves, and onto yet another "mysterious medical condition" that they just don't understand.

I have a very supportive family, for which i am very grateful. But the one place we silently differ is in our view of autism awareness. Awareness for many people means donning a bracelet, attaching a bumper sticker, or perhaps even attending a rally where people chatter on about a grossly UNDER reported Autism incidence, based on decade old statistics from the CDC.

When someone comes up with a bracelet or T-shirt that says " Autism awareness : Be aware that vaccines cause it ", then I'll be more than happy to join the crusade. Until them however, I abstain from that activity, and just keep moving forward with the now 5 year old effort to undo my sons vaccine damage.

A. F.

Kim, my precious son is 17 years old this year and I can relate to what you are saying as I am going through the same thing. Trying to figure out about redoing our Wills to make a Trust, enlisting in the military!, figuring out guardianship details, etc. Its very overwhelming and also, as you said, makes you think about what "could have been". What would have been his hobbies? What would we have talked about? What school subjects would he have enjoyed? Would he like fishing and guitar like his dad? What kind of grades could he have had? What kind of profession would he have liked? Instead, its what kind of childrens' DVD will he be picking out to watch today? Heavy sigh. Thanks for your post.

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