Where Is Our Help, Mr. President?
By Crystal Engler
I’m fed up. I’m sick to death of fighting alone. Autism is about to swallow me whole, and where are you, government? What concerns you least? The fact that families are drowning in the darkness of autism or that the children you won’t help are growing up to become 200 pound problems that will fall into your lap once our generation is gone?
I’ve passed through all the stages of grief. When my little two year old was diagnosed, I had faith that he would recover. I would fix him. Now, nearly four years later when I can no longer carry him out of Wal-Mart of a freakin' Books-A-Million store by myself, I wonder if it will ever happen.
I’m worn out. I consider myself to be a proactive autism warrior. I’ve done it all; there is no stone left unturned. And at the same time, my son’s temper tantrums and out of control behavior are no better than they were when we began this journey. What exactly do you suggest for us, Mr. President?
I’m tired of screaming at the top of my lungs and having no words escape from my mouth. While most people are concerned about the economy or the Superbowl, autism warriors are fighting a different battle. We have greater concerns. Will our children get away from us and be found at the bottom of a nearby lake? Will seizures begin when puberty sets in? How will we handle an out of control teenager who’s twice our size? Who will care for our children when we’re dead?
I’ve searched for years. You offer me no help, and not only do you not meet my needs, you blatantly deny any wrong doing and suggest that alternative therapies I try aren’t worth reimbursement. So, where do we go? You’d be quick to swoop down on my house, critiquing every parental move I make if I so much as spank my child in public. This week alone, two mothers murdered their autistic children, while one attempted to take her own life. Where is the help that we need, so that more families don't end up like this? Nobody is there. Where are you, Mr. President?
Now I wake up and wonder what the day will hold. Pre-term labor contractions and a jammed finger from trying to control my son? That’s what I received today. And while I, and thousands of others like me, fight in silence because other people don’t want to “hear it”, you willingly provide assistance for those who have completely normal children and NEED money for food, housing, and clothing. Is this ironic to you, Mr. President?
Somehow, somewhere, there has to be an answer. My suggestion for you? Before you’re dealt with thousands of children whose parents are long gone from the stress and strain autism puts on their weakened bodies, find an answer. All you have to do is listen to the cries of families living in this crisis. We need help. We need respite, real medical attention for the physical complications of autism, therapy for our children, and perhaps therapy for ourselves. We need answers. For if you won’t find them now, one day, they’ll be unanswered questions for government officials like you to find. Now is your time, Mr. President.
Crystal is the mother of a five-year-old with autism. She is an advocate of biomed and is currently implementing Dr. Amy Yasko's approach with her son. She is a freelance writer and can be found at http://crystaldavidsonengler.blogspot.com.
Crystal,
I've re-read your article several times to see if it's just me...but each time I come to the conclusion that you appear to blame President Obama for all of government's inaction. (In particular the line that asks whether he finds irony in your situation seems unfair and judgemental.)
My child is now 13 and I deal every day with some of the things you fear are in your future. I agree that additional help is needed and one of the commenters correctly pointed out that health care reform (if passed) includes guaranteed issue clauses that will enact immediately for children.
However, I must protest your decision to slant your article in what appears to be a partisan attack on the administration. Believe you me, in the 11 years since my child was diagnosed neither President Bush nor Clinton made any significant contribution that was aimed directly at helping families touched by autism.
On a practical note: I advise a Special Needs Trust to provide for your child's financial future and to get a good behavioral modification program started asap.
I hope your article stirs up a response so positive that it will make me look like a jerk for criticizing your tactics. Really...I do. :-) God bless you and your family.
Posted by: Roxann Breazile | March 07, 2010 at 01:09 AM
Great article Crystal!
Posted by: Lillith Brooks | February 25, 2010 at 03:56 PM
CSO,
I'm not well-versed at all in what fragile X involves, but I would have to believe that some factors in other forms autism overlap, and both would benefit from further research and funding for care in many ways.
Several activist groups have worked to get the Combating Autism Act passed in 2006, and there have been other efforts to pass legislation to ban thimerosal, and to end insurance discrimination on state levels. Some effort has been made, unsuccessfully so far, to pass legislation requiring a vaccinated vs. never vaccinated research to be done, and Congressional Autism Research Briefings have been held.
On the Combating Autism Act from Wikipedia:
"The Act requires the director of NIH to develop and implement a strategic plan for autism research and a budget to fund this plan. The plan and budget would have to take into account recommendations of a public/private committee, the Interagency Autism Coordinating Committee, which itself would have to include at least one-third public members, a person with autism, and a person who is the parent of a child with autism. The act provides grant programs for states to develop autism screening, early diagnosis, and intervention programs for children."
This implementation of a strategic plan is still ongoing and, to me, very little preventative research seems likely to come out of the process, nor recovery research.
There are not enough public members involved in this process, I believe, especially not enough members well-versed in the biological issues and needs of our children, nor versed in what biomedical approaches appear to be effective for some and worth researching.
Posted by: JenB | February 25, 2010 at 02:40 AM
I have 2 grandchildren with fragile x and autism. For 6 months last year I lived in their home as they got the diagnoses, dealt with the blow, started the stages of grief and went about setting up and implementing schedules of therapy, etc. I was lucky- I got to go home.
My son and his family live, eat and breathe autism and fragile x from 6 a.m. to 8 p.m. Every minute is scheduled for these two beautiful children to get everything they can get at the tender ages of 2 and 4 to aid in their brain and physical development, always hoping for a cure before it is too late.
My son and wife are spent emotionally and physically. Everything is so expensive and not paid for by insurance, or very little, and these practitioners don't even file paperwork, that is just one more chore for parents of children with autism. The pain is unbearable for all extended family.
Mr. Obama did appoint a young man to his council dujuor that I understand is quite controversial because he is college educated at an ivy league school and is a highly functional Asperger's Syndrome person who believes in no intervention, but that society must just adjust to autistic children and make room for their idiosyncrasies.
While I am new at all this, I plainly see that there are different philosophies about the cause of autism. So, does this mean that groups representing all philosophies cannot band together to lobby Congress on the matter? If not, why not. As one poster put it, the government will care for these individuals in the future in some capacity or another, so why wait?
We should address this epidemic now. I feel that groups of all persuasions should join together, get a good PR person and hit Congress good and hard for funding. Also, depending on what area of the country you live in, you may or may not be able to obtain the services that your autistic child needs. That matter should also be addressed.
Maybe I am just a naive grandmother. As I said, I am less than one year new to this.
Posted by: DSO | February 24, 2010 at 07:26 PM
Billy, I'm not sure what you mean. Positive or negative attitude aside, we have a "situation" here. My goal in writing this article was to make those who have not experienced our agony "feel" what it's like and perhaps get an answer from the government as to what they suggest for this epidemic. It has nothing to do with optimism or pessimism. I want an answer, as well as thousands of other parents of autistic children. What the heck are we supposed to do?
Posted by: Crystal | February 24, 2010 at 01:25 AM
"Crystal, attitude is a decision you make personally. It has nothing to do with the president or what you think your child cannot do. It has to do with the way you see the world."
Hi there Billy,
Wow... that ahhh.. was ahhh...pretty deep what you just said there bro... Ummm.... Could you please elaborate on ah what you meant there bro? Because the way we see the world is much different than you do.
Posted by: Wacko Smasher | February 23, 2010 at 11:20 PM
Crystal, I'm sorry I'm late in posting. I could feel your anger jump off the page and rightly so. The ignorance to autism being an epidemic is most certainly a political issue that is years past needing to be addressed. I'm sorry a few have written comments suggesting you are spanking your child or that it's an attitude adjustment needed. Those are unhelpful comments coming from places of judgement. Please ignore them. This is the exact opposite of what is needed.
I think many of us would have to physically pick up and move our children from their public tantrums when they were 2 or 3yrs old but when they start getting bigger it's not possible. It took me a very long time to come up with some things that have helped beyond the biomedical complicated picture (my son is now 10yrs). Many things help in that avenue and I don't know what I would do without biomedical knowledge, however I needed to change daily tools in order to overcome the struggles of tantrums and getting him to move himself, willingly.
I started involving him as much in decisions as I could, and started having him carry around lists of where and when were were going places and he had the ability to check everything off when done. Our kids are in pain with extreme difficulty in communication but inside they are just like everyother kid, wanting to have some control over their life and surroundings. My son started having seizures 1 1/2 years ago and due to these and other medical complications the behaviors that accompanied it were harsh. Once I institued the check list, included his involvement and quick choices my sanity has been saved. Every situation required me to present him with a choice and then he would comply on his own without the need of physically moving him (even if the choice is as simple as "would you like the chair this way or that way, but you have to sit down", or "would you like to go in this door or that door but we have to go in", I give the choices repeatidly and very fast so that his brain stops going off in the direction of tantrum and has to concentrate on what I'm saying). If you would like some examples please feel free to e-mail me. [email protected]
And thank you for voicing what so many of us are feeling.
Posted by: Allison | February 23, 2010 at 10:17 AM
I so agree with you! When will people hear our cries? When will they "really" start helping our kids? Maybe when it finally reaches "1 in every 2" kids (which it will)! I pray someone hears us before it comes to that.
Posted by: Stacey Hodge | February 22, 2010 at 04:36 PM
Crystal, attitude is a decision you make personally. It has nothing to do with the president or what you think your child cannot do. It has to do with the way you see the world.
Posted by: Billy | February 22, 2010 at 10:31 AM
My son is 18 now. Yes, it's been very isolating. Quite lonely. Eventually toilet training (age 6), dressing (age 10), and enough language to convey wants/needs(past few years) came along and the tantrums diminished. We have meds-critical for the puberty phase. Sometimes he pinches, but hitting is not allowed in our home. Which means no spanking, either. If you don't want to get socked in the mouth, don't spank your autistic son. When he got too big to carry I got a wagon that fit in my van. And we don't go anywhere that he doesn't want to go. He has a personal Care Assistant for about 5 hours a week. And he goes to school. There is a great camp that he goes to one week a summer. It's better, but it surely isn't the quality of life I had hoped for- not for either of us.
Posted by: Ann Bledsoe | February 22, 2010 at 08:14 AM
thanks for that.
First Lady: fat cells store toxins.
President: novel idea = Dalai Lama for president.
MAKE AUTISM STOP
Posted by: MAKE AUTISM STOP | February 22, 2010 at 12:18 AM
ML Garcia, RIGHT ON! This is a national security issue, bottom line. No one is going to put to blame the holy grail of vaccination. The idolotry they worship, is sacrfice of human babies and families lives. They don't care. Presidents don't care, and people don't care. UNTIL...it becomes THEIR problem. Until, one in two have autism, I am afraid, we will appear as the quacky parent, who are putting the vaccine program at risk by our "wild unscientific stories", and meanwhile as the world worries about underwear bombs, wars and rumours of wars, tiger woods sex scandals, and the "new" discovery of how to be healthy (what a laugh), we will have a very different world in a few years. A world, in which more than half of the population will require LIFE TIME assistance because their brains are fried by vaccines, fluoride, msg, dioxins, pesticides and wild willy nilly birth drugs.... God help us all.
Here's a for instance. Michelle O wants no obesity in children...why don't you take on the freaking FOOD industry, which puts HFCS in almost ALL our foods, MSG etc. I know you really want to say something, but you can't can you? Maybe your husband got a lovely political money offering before he became president, so we can't have that can we? And so it goes..the pharma companies make billions of dollars of our misery. They have given their thirty pieces of silver to all our presidents, and sold our kids out. And so it goes, as long as the world loves money, more than lives.
Posted by: Kathy Blanco | February 21, 2010 at 11:31 PM
The HCR Act of 2009 passed legislation that end autism insurance discrimination by including the requirement that all health insurance policies cover behavioral health treatments....
Sadly this is currently being filibustered.
http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=7522291
Posted by: Greg B | February 21, 2010 at 11:25 PM
The government caused this epidemic.
How can you trust them to do the right thing? They won't even admit they need to take a closer look at vaccines and revise the number of unnecessary/repeat vaccinations.
Our children are kids now and the govt doesn't care because we're shouldering all the responsibility. Not "bothering" anybody with our pain and leaving schools and public places when our child is in so much pain they can't see straight! I hate to say this about our own, but how will the govt react when there is an entire generation of adults who can't fend for themselves, considered useless, can't pay taxes and be productive? You better worry now, govt. Here are a few easy steps. You can start by going back to the vaccine schedule of the 80s, admit GFCF helps most and stop labeling autism as a mental disorder so we can get coverage and see the specialists we need.
But I know you won't because you don't want pharma upset at you. What you're doing to us and our kids is criminal.
Posted by: ML Garcia | February 21, 2010 at 09:34 PM
I agree with each word expressed here. If help is not on the way soon for these families, we are doing a terrible injustice and being lead my a government that does not care. This is suppose to be a caring nation!!!!
Posted by: Dolores Jackson | February 21, 2010 at 05:09 PM
Look into NIDS, Crystal. Our kids are sick! Neuro-immune dysfunction, www.nnyautismcenter.com
Reading your article, you broke my heart, you are so good at sharing your experience. I understand your fear. I know where you are. I was there 18 months ago.
I took my daughter to see a doctor in Sept 08 and she is much better. Talk to them, they will answer your questions. Give it a try. What do you have to lose? I know you dont hear much about it but I am serious when I say they gave me my girl back. She will be 5 in June.
Posted by: Jen | February 21, 2010 at 05:07 PM
Crystal, if nothing has helped so far, I wonder, have you looked into Lyme disease, which a huge percentage of autistic kids have? I'm sure you've tried all the usual (and not so usual) supplements and treatments to improve his health, but sometimes long term antibiotics are the only thing that can help.
I recovered my two unvaccinated kids from Lyme disease. I know they would have been autistic if I had vaccinated them.
Posted by: Kristina | February 21, 2010 at 03:59 PM
Thank you Crystal.....ditto here.
I have two other children (one has HFA/AS) that I have little to nothing left over for because my youngest, non-verbal 6 year old takes all of my time and energy. My husband and I have no friends left, mainly because we have nothing to talk about with them. I am angry (even though I know it is not right) at everyone that has a "healthy" child. I can't hear them talk about whatever their (seemingly) insignificant problems are when my son CAN"T TALK!! Angry, Angry, Angry!!
I can only get one hour a week of one-on-one speech therapy for him from the school district. Sure, our health insurance will pay 70% for speech, but only after our 5K deductible. We have to have a high deductible to be able to even pay for the insurance. And......my husband is employed by our carrier. Ditto for OT. In fact, this last school year I enrolled him in a Internet Charter School and home school him just so he could get one-on-one therapy and to not have to put him on a bus for two hours each way every day to attend the "county Special Ed Kinder class. Can you imagine the stress of trusting some bus driver to spend four hours with your non-verbal child every day?? Think about the time just sitting on bus with no interaction for 4 hours every day? But that is the "best" the county special ed program could do with us getting an attorney that we can't afford!!! Angry, Angry, Angry!!!
It just goes on and on....we spend hundreds of dollars every month on supplements that are working and helping him but no one to reimburse us for those costs. ANGRY, ANGRY ANGRY!!!!
I have no life outside of autism anymore. My girls night out is the once a month community action committee meeting for special needs parents!! Who Hoo!!
Yes, we get Respite refunded but no one to watch the kids. It great that we get it but it goes unused. It's hard to get people to watch a 6 year old that is not potty trained and does not talk. ANGRY, ANGRY, ANGRY!!
I have lost all trust in anyone with authority in this regard. When you can't trust your government and your doctors and your teachers.....you are left with nothing but "our community." While I appreciate this website and others like it....it is a very isolating existence, isn't it?
Posted by: Shannon Hunt | February 21, 2010 at 03:06 PM
People wake up. Obama cannot do anything without being told what to do. For Christ's sake the man cannot even give a speech or speak alone without a teleprompter. And you expect this man to get it?
The sooner we realize that we are alone and that the government and the president are not going to help us the sooner we can get a real president in office. I vote for Ron Paul. Look him up.
Posted by: Elucidatus | February 21, 2010 at 02:22 PM
Bravo for Crystal!!! We need to read more from her. She writes clear and with passion. More articles like that might start a fire under all our politicians. I would very much like to see Crystal come up with specific suggestions how government could help childern with autism. For a start we should all call our congressmen and senators to stop playing politics and push for a single payer medical system. It will be cheaper and will provide better care for all our citizens.
Posted by: Billy | February 21, 2010 at 02:04 PM
Geoff,
Unfortunately the government does not get to choose whether to spend money on this, just when..
By not helping provide support to young autistic children, the government is likely to have far more autistic adults who need instiutional care. 1 in 68 boys now; isn't that scary. What happens when they grow up??The reality is that autism rates are apparently increasing massively.
And children with severe autism who cannot speak or become potty trained; are now growing up and becoming teenages and young adults who cannot speak and aren't potty trained.
Social Security , adult institutional care or home support; the government has to foot the bill eventually.
Most Moms and Fathers of diabetics are not worried about the need to possibly provide life long institutional care for their chidlren. Mothers and fathers of children with severe autism very likely are.
And given the huge percentage of the current childhood population affected now, it is about to become everyones problem...
Posted by: hera | February 21, 2010 at 01:47 PM
Of course it is an illusion. Obama got where he did by cutting deals with the already very powerful - he can't change anything even if he wanted to. Only we can change anything, by winning the public argument. It's Obama who is truly helpless. But Crystal has made a valuable contribution.
Posted by: John Stone | February 21, 2010 at 12:37 PM
Brantly - I agree with your sentiments but also wonder if the childhood obesity epidemic isn't tied to some of the very same sources of ASD's, asthma, and allergies.
If the First Lady takes on Big Food/Pharma in this fight against obesity I will be impressed. A good start would be to dis-incentivize high fructose corn syrup, and put a stop to non-nutrient ingredients (coloring) in food. And while we're at take a look at why more and more kids are on prescription meds (mood disorders, asthma, allergies, etc.). And finally, can we have closer scrutiny of genetically modified food?
Instead - I hear her talking about exercise and more parental cooking. These suggestions are certainly good, but it reminds me of trying to bail out a sinking ship with a thimble.
My kids are thin but I see plenty of overweight kids almost every day (and we homeschool so that is saying something). I don't remember this when I was a child (it seems like we had one heavy child per class, maybe). Then again, I don't remember autism, Aspergers, deathly peanut allergies, or much asthma either (except for my uncle who was the only person I ever knew with an inhaler).
Posted by: Parent | February 21, 2010 at 12:32 PM
I do not think we have been left alone by the government.
Why did I go ahead and mind the doctor and get those last few shots that put my kid over the edge. Because of government would not let my kid in school.
There was also a government agency the CDC telling what vaccines and and the schedule of those vaccines to be given.
There was the government run FDA that was suppose to watch out for what was put in the vaccines.
There was the NIH that is involved in education of doctors about vaccines, and dictates to the education system what is taught in school about vacccines.
There is the education system run by the government that educated me and many more like me that vaccines was the miracle of the modern age and not to be questioned.
Is not the government protecting the pharmy companies that make vaccines from law suits of those damaged by vaccines.
That is what happens when government intertwine itself into an industry.
Posted by: Benedetta | February 21, 2010 at 12:28 PM
Very interesting sentiments and I can't begin to imagine what it is like to live your daily lives - but I am confused. The Presidents Health Reforms are directed at getting the most out of the system and affordable care for all. I can imagine being rich and having an autistic child is not the same as being middle class or lower.
How easy will it be for you to get health coverage for your kids when they turn adult in todays health system? The universal coverage would surely help in this situation?
The obesity problem is just the tip of the diabetic epidemic. I'm sure if the First Lady were directing her attentions to autism there would be similar posts on Diabetic blogs.
What could the president do that is not considered socialist? How much money would you like the government to spend on this?
Posted by: Geoff | February 21, 2010 at 11:30 AM
Right on! Where are you government??? Why have we been left alone? Why has nothing been done about this? What will you tell all the parents that will join our group this year? Why don't you care? I wonder that myself, every day.
Posted by: Nicole | February 21, 2010 at 11:27 AM
I know. It's so frustrating, but he has the power to do something. I just don't know what it's going to take.
Posted by: Crystal | February 21, 2010 at 11:24 AM
I'd never expect anything of Obama. His own children have health issues most likely triggered by vaccination, and he either doesn't get it or doesn't care. Doesn't his older girl have asthma - a classic vaccine-induced autoimmune condition?
When I was growing up, kids didn't get asthma. None of my schoolmates, nor anybody I knew had it. Now the figure is... what? one out of 10 school age children? That's according to the EPA.
Obama's solution: find the girls a hypoallergenic dog. I'm sure they're enjoying their new pet.
Posted by: Rae | February 21, 2010 at 11:02 AM
My feelings exactly. Im scared, Im angry, Im depressed, Im broke, Im frustrated, Im sick, hurt, and did I say angry? It's a good thing I dont know how to fly a plane.... by remote control. :)
Love ya Crystal!
Posted by: bensmyson | February 21, 2010 at 09:09 AM
I hear your cries, Crystal. When I was pregnant and my son was violent, my OB/GYN just finally said I was no longer allowed to go out in public with my son, as he was going to cause me to miscarry. I had just lugged him, a superhuman strong tantruming 45 lb. 3-year-old one mile through sand and heat off of the beach to the car. He also had kicked me as hard as one could (including the head) in many places while I changed his diarrhea diapers 14 times a day. I was lucky that my pregnancy ended up just fine.
Obama is coming to our town soon and I'm finding ways to get autism families to carry signs that read "1 in 100 American children have autism. When will you pay attention?" and different short and sweet statements like that. Any ideas will be gladly received. As they say, the silence has been deafening.
Posted by: kim | February 21, 2010 at 09:06 AM
Don't get me started. The first lady's new cause is childhood obesity. Fat kids can talk, have friends, go to regular education classes, attend college, have jobs, get married, have children, and live fully productive lives. Many of our children will never be able to do any of this, yet they are ignored, I just don't understand.
Posted by: Brantly | February 21, 2010 at 09:00 AM