Oh, the life of an autism parent.I was asked if I could ‘guest blog.’ I found that to be an immense responsibility. I mean, how do you ‘preach’ to a choir that . . .
‘sings the same songs’?
knows the ‘preacher’?
has walked the exact same walk as you?
I must admit that, if autism has a grieving process, I am long stuck in the angry part of grieving. It seems I have had that anger issue for better than 16 YEARS NOW.
I see myself as a mom first. How sad is it that the wife part comes second, even with being married now for the second time? But, my husband knew what he was taking on. I am, and will forever be, Michael’s Mother!Michael is now a young man at age 22. Not that you could tell that on most days, other than by his beard. He is a MAN, that cannot fight for his own rights.
I went to DC for the first time when Michael was only eight years old. (Some of us have been at this for so long that if we were hamsters, we’d have had to have ‘wheel replacements’!) I went with my fellow autism parents. We went so those of you with young children would have no need to read this. We went
knowing that something was wrong.
Now, we really know: 14 years later and yet another ‘annoying IACC moment.’Oh, dear God, we know.
We have always known!
The IACC is not listening. They do NOT care, not when they only had to face three public speakers today: One was a no show, one had a video, and the third they enjoyed — yes, they ENJOYED — because they could blame the denial on denial.Other than Lyn Redwood, who has a place at the table on the panel, it seems we have no allies. I personally feel lost. I feel lost in 20 years PLUS of questions with no answers.
But maybe there ARE answers, HUGE answers! And better ways to handle ‘items’ than the way they decided to vote today at 11:25 AM. If every one of us who watched our children regress after a round of vaccines is wrong, and vaccines really are as safe as they say they are, then STUDY them (in the way that Dr. Coleen Boyle of the CDC admitted they HAVEN’T been studied at the House of Representatives’ Committee on Oversight and Government Reform’s hearing in November, 2013) and PROVE us wrong. If they’re right and we’re wrong, it should be easy, right?
With the IACC panel vote of 15 to 6 today, they left the window open — in the middle of a hurricane. Again. No, not the window, a whole side of a house! For better than two decades, I have waited for the IACC, the President of the USA, or any public official to ‘clean house.’ (Frankly, my own home needs a good long dusting, but it’s nothing like the debris that the IACC left on the floor.)
Whatever happened to being ‘transparent’? When people submitted public comments for the IACC in November, that meant they were public, correct? Oh no, they were for the Committee’s information, public only for those who know how to seek it out!As I spoke to an autism mother today that is lost in the confusion of the IACC’s delusion. Her son has a placement in a residential program at age 10. AGE 10! Are her concerns non-important to them? At the least her son will have a ‘roof’ over his head. Members of the IACC, ask yourselves what will be your legacy? Only 490,000 homeless in the next 20 years?
Back to where I started . . .
Have you had enough???
I know I have. No one will ever save our children other than us. That is exactly what parents do. They care for their young, as I will care for my forever-young son until the IACC listens, or until the day I die.
I ask you to join us at the next IACC meeting. MAYBE, if we fill the room they will feel the intensive need we SEE and that we FACE each day! Please join us on April 8th, for the good of the person (YOU LOVE), with autism. The only way to move forward seems to be seen in numbers. I do not believe the IACC yet sees the urgency in this that I felt more than 14 years ago.
Are we doomed to wait 14 more years? Can your child wait that long?
I do not care if your child is 54 or 4. Have you ever stood up for your child on a national level? Because if NOT, do not even ask why no progress has been made.Be there, if for no other reason than to show this panel that we are united, regardless of race, creed, or ’cause.’
~ Carol J. Fruscella Olson
I went to DC for the first time when Michael was only eight years old. (Some of us have been at this for so long that if we were hamsters, we’d have had to have ‘wheel replacements’!) I went with my fellow autism parents. We went so those of you with young children would have no need to read this. We went knowing that something was wrong.
I ask you to join us at the next IACC meeting. MAYBE, if we fill the room they will feel the intensive need we SEE and that we FACE each day! Please join us on April 8th, for the good of the person (YOU LOVE), with autism. The only way to move forward seems to be seen in numbers. I do not believe the IACC yet sees the urgency in this that I felt more than 14 years ago.
Maria ,
You can access the IACC website from the link I posted. That will also assist folks with how to send in written comments. I’d urge you to read my piece because it does explain how the GAO report has given us a chance logistically do something about the IACC not meeting their designated mission.
Becky,
I would ask that you write a letter to the IACC specifically for the next meeting and send them those papers or the link.
Thank you both,
Carolyn
Maria,
Check my post above. It has link to the IACC’s webpage and you can find out there how to attend a meeting. I’d also suggests that you write a letter for written comments as well. The information how to do so is in the piece I wrote and the link is in my post. Thank you for wanting to do so.
Carolyn
Carol,
First I’d like to thank you for writing this very heartfelt and emotional blog. Walking along side you for many years after the original rally back on April 8th, 2000, we’ve share many frustrations for our children. It’s been a difficult path since then and many of us have worked hard in many ways to ensure the services and supports many are not able to obtain for their children. That too is why this date is very significant for many of us that have been on is journey for over two decades. For me I feel I need to attend to just honor that anniversary and tell the IACC we’ve been waiting for research answers since the initial Congressional Hearings spearheaded by Rep. Dan Burton who himself has a grandchild living with autism. I heard many members state we needed as a community to allow more time for research to occur, well I think two decades is long enough.
After attending the Congressional Hearing on autism in November of 2012, not this past year and yes we’ve been waiting that long for a response, I realized that we were seeing a blatant denial of what is being done to our families and our children. I sat there that day as a parent who paid my own way, took me away from my family and off work, because I felt I needed to do so. The same holds true for the IACC meetings I’ve attended as has our son who has autism, to provide oral comments in a segment that allows little time and very little feedback from a group that is there to represent the autism community. They also failed to provide the one accommodation our son requested as an individual with autism, to be allowed to speak early in the oral comment section because he does become a little anxious when he has to wait. They also failed to notify him until the evening prior that he would be provided a time slot to provide oral comment. However he did so patiently, even after being subjected to a blood draw, EKG, and some other tests that morning at the NIH because he was being considered as a participant for a study on brain inflammation in adults with autism. Something we felt was very important for him to do since he regressed into autism after a vaccine injury. For that July 8th meeting, we also paid our own airfare and hotel expenses, and were given less than three minutes each to comment. Please however watch our son Nicholas, he did an amazing job considering he was once diagnosed with severe autism and we were told he’d have to be institutionalized prior to age ten. He now attends college and has made the Dean’s List many times. I want you all to see how he still may struggle with his biggest challenge, expressive language, but he gets his points across very well.
I also thank you for Carol for attending the Nov. 15th meeting of the IACC and sharing your personal story there as well as what your expectations were of the IACC. I would encourage other parents to take the time initially to watch these meetings, listen to those comments, as well as watch the reaction to those comments from the IACC members and consider that these are the individuals that have been chosen to sit on this committee to represent our children and us. Here is a link to the IACC committee meeting website where you can review the previous meetings:
http://iacc.hhs.gov/events/index.shtml
Additionally I want to personally let all of the parents reading to not feel bad if you cannot make the meeting on April 8th. Many of us are not financially capable of doing so and our children too may not allow for us to get away for a trip of that nature. I would ask however that you consider writing a letter to the IACC about your concerns. Please read the GAO report that indicates their findings and the concern you have over that. If you’ve observed past oral comments you support, please focus on those issues and how they personally affect your family. Most of all though tell your child’s story and tell them we cannot wait any longer.
I also wrote a piece as a guest blogger for TACA that I’d like you to read and share to allow more information on how to write a letter to the IACC and why it is so important, especially now.
“If the IACC’s Strategic Plans were IEPs, would they be in non-compliance?”
http://tacanowblog.com/2013/12/31/if-the-iaccs-strategic-plans-were-ieps-would-they-be-in-non-compliance/
Thank you again Carol for your efforts and I look forward to seeing you at the meeting and celebrating that 14th anniversary together.
Love ya!
Carolyn
I would like to go to this meeting. Can you guys point me in the right direction. I would love to help push to see as MANY parents, family members, children and adults with autism, and anyone else who cares FILL THIS ROOM.
With you on this one, and wish I could be there, but this seems to be the year of meetings, weddings, summits, and of course A1! I’m still going to try to go to this, but no guarantees from me. 🙁 I can guarantee that I will write, call, and hound whomever I have to to help!!! 😉
My heart aches with your pain. Thank you for sharing your experience so poignantly. I pray people will take note. I think there are positive trends, but these ‘regulatory’ people seem to present huge barriers. I was encouraged by this exploration of research. I wish all the members if the IACC would read all these papers sited in this talk: http://www.blogtalkradio.com/askdrjohnbergman/2014/01/14/vaccinations-the-ugly-truth