by Evelyn Ain

In the past couple of weeks we’ve been hearing a lot about people traveling with children who have autism, only to be met with their worst nightmare of being thrown off planes because their children are out of control. In most cases the parent explained that their child has autism, but it didn’t matter. They felt that the flight attendants and crew were uncaring, under trained, and rude to them and to their child. Situations like these seriously make us evaluate and question just what is going on here?

Are people really being insensitive and rude towards our children’s disorder and behaviors or are we as parents of children with autism using our children’s disorder as an excuse? Where does one draw the line of what is appropriate? Tolerated and publicly accepted? Beyond all, let’s not forget safety.

Surely no one will argue the fact that there are still many ignorant people who know little or nothing about autism. I’m sure many of them don’t even care to understand the disorder. Then there are those people who work with the general public that should have some sort of knowledge or training of autism for better understanding when certain situations arise. Just some examples: security people in large stores, all airport personnel, flight attendants and the Transportation Security Administration (TSA).

I’ve had many unpleasant encounters with the TSA at the airport while traveling with my son. In the past TSA had a special page on their Web site: “Tips on traveling with children who have autism.” I’ve recently gone back to their Web site and was unable to find any information on traveling with children with autism. Instead, they posted information on traveling with hidden disabilities, but there is no mention of autism. Interesting, because previously on their site TSA had listed items that a parent was allowed to bring onto the plane, like extra juice with an accompanied doctor’s note. Mysteriously, it is now missing.

Not that it made any difference to me. On several occasions even with my doctor’s note explaining that my son only drinks this specific juice brand and size, the TSA tried very hard to take my juice away from me. As you can imagine an unpleasant exchange of words would immediately follow. This again raises the question: Why isn’t more done? Why is a government agency that is set up to protect us, actually making it quite difficult and unpleasant for a parent traveling with a child with autism?

Some serious changes need to take place in this country and fast. It’s hard being a parent of a child with special needs. Parents are constantly watched and judged by others. We fight for services, insurance and school placements. Many times I personally feel that the system punishes parents for having special needs children. We have to prove and justify everything 10 times over and continually explain our actions and ourselves. Why?

I’m not saying that a parent is always right in every situation, but every situation is unique. We need to try and come up with a working system, one that would accommodate everyone, or at least reach some sort of compromise.

By Evelyn Ain

The Hannah Poling case had a ripple effect on the autism community. Regardless of the decision, autism was receiving national media attention. CNN even televised the press coverage live. And yet all of that press and talk that followed for the next few days left us with more questions than answers, and that is something that I am not comfortable with.

For whatever reason, the autism community has been receiving far less attention then needed. Who can forget the Combating Autism Act? Remember how hard everyone had to fight and for what? For research money? For a developmental disorder that’s affecting 1 in 150 children and whose cause remains unknown? I can’t help but compare autism to AIDS, leukemia, and diabetes. We already know that there are more children diagnosed with autism then those three diseases combined, but the autism community receives far less money for research than any one of those diseases.

Of course we have the Centers for Disease Control (CDC) who are basically ignoring the fact we have an epidemic. According to the CDC, medical professionals are better at diagnosing the children. While that must be true to some extent, is the CDC really saying that doctors couldn’t diagnose autism three years ago but today the same doctors can? What qualifies as an epidemic? How come there is so much more emphasis by the CDC on the flu vaccine each year than on the amount of children diagnosed with autism each year?

So now we have all these kids diagnosed with autism; what happens to them? Appropriate schools and placements don’t even exist in many states and counties. People mortgage their houses and borrow money just to be able to pay for basic therapies for their children such as speech and Applied Behavior Analysis (ABA). We all know that these therapies are expensive and therefore parents can’t keep up the expense long term, so often just as the child starts to make progress the family runs out of money. We all know the rest too well.

I get extremely upset when I see so many different organizations raising money for children out of this country. “Get to know this child” and “Your sponsoring this child can help save him.” These are all too familiar phrases we hear on television each day. How about our past presidents, such as President Clinton raising millions of dollars for children in foreign countries?

Why doesn’t anyone ask what about the children in this country? Don’t we need to fix ourselves before we can fix the problems of others? Do all of these organizations really believe that we have it all here and now its time to share the wealth? Shouldn’t President Clinton’s first responsibility be for this country?

Maybe that’s the answer: We should display children with autism on television and ask the public to sponsor them, get to know them, and help provide them a better future. Maybe that’s what it takes for people in the United States to realize that we have problems right here at home, and that our children suffer right here every minute of every day because of lack of funds.

We have so many questions regarding autism, and so many issues, and yet this particular disorder remains to be as mysterious today as it was yesterday. At times I question whether or not this mystery is here on purpose. Does the U.S. government feel that the less we know about autism the less it will cost in the long run? I truly hope not.

April is a very special time for us here at Spectrum. It’s our fourth anniversary!
April is also a very busy time within the autism community, because it is autism awareness month. With that comes many seminars, workshops, conferences the beginning of fundraising season, parents planning for their children’s camps and thinking about where their child will be when the new school year starts in the Fall. In the middle of all of this we have a presidential election.
I’m really not into politics, in fact I don’t even understand it all that well. But I do know that it is very important that our next president understands the growing financial need of special education and of the growing numbers of all classified children’s needs.
Hillary Rodham Clinton, Barack Obama and John McCain are our leading candidates. I have seen some debates and interviews and yet I feel as though I know little if anything at all about them. It seems that everyone is talking about change. “We need change,” but what I want to know is what have these candidates accomplished for their states prior to running for presidency?
In past presidential elections, candidates always boast about all of the wonderful things that they have done for their states, and many times those accomplishments are disputed by their opponents. I guess that’s where the phrase ‘dirty campaigning’ came from. They use those accomplishments and turn them into failures. For the majority of the public, including myself, this is how we judge them: through their personality. We’ve made our decisions based on whether or not we liked these people for who did what and who said what.
In this particular election everyone is talking about all of the problems that this country has and how it all needs to change. You have to wonder as a voter, why were their policies not enforced more while they have been Senators? Take for example the No Child Left Behind Act. We all know that many children across the United States are being left behind under this program. What if any course of action has been taken to address this issue?
Education is another weak subject during this election. I haven’t really heard much about their thoughts regarding education. With an average of 30 percent of students in the United States dropping out of high school, that leaves the nation’s overall graduation rate at 70 percent, which means that one out of every three students will not graduate high school.
There are many more issues, which brings me back to my point. As these candidates continue their path to the White House, I still feel that there’s a lot we don’t know about them. I am left with more questions and I am more confused then ever. Who are they? What do they really represent? How effective are they? And mostly I want to know what each and every candidate has done that has had an immediate impact on his or her state. I’m not talking about bills and policy that get caught up in a bureaucratic mess.
After all we are talking about choosing our next president. We shouldn’t feel as though we are electing someone only on promises, let’s vote for someone that has and will continue to accomplish what is best for our community and our country

I am trying to figure out exactly what freedoms we have in this country? Speech, I suppose, since I am able to express my feelings and question our freedom. A very sensitive topic within the autism community is vaccines. Many say that genetics cause autism, and there are just as many who say that vaccines are to blame.

I don’t think that anyone can dispute the fact that so many diseases have been eliminated thanks to vaccines, and for that we live healthier and longer.

I’m not writing about vaccines, autism or genetics, this is about basic human rights. I wonder how many people know and understand that vaccines are “recommended” by the CDC and not “mandated.” Recommended! So how do we go from a product that’s recommended by our federal advisory committee, to children not being allowed into schools unless they are fully vaccinated.

In recent news, the parents of 2,300 students in Prince George’s County, Md., were summoned for a court hearing by Judge William D. Missouri, the county’s administrative judge, and Judge C. Philip Nichols Jr., who handles juvenile matters.

They threatened parents, saying those who do not appear could face fines of $50 for each day they fail to get their children immunized after being charged. They also could serve up to 10 days in jail.
State officials say that out of 131,000 students, 2,300 have not been immunized for chicken pox and hepatitis B as mandated by the state. Students have been barred from attending schools, almost two months after a Sept. 20 deadline for meeting the requirement. Prince George’s state attorney Glenn F. Ivey said, “We can do this the easy way or the hard way, but it’s got to get done,”

Recently, I was looking at the “Recommended Immunization Schedule” which is based on the 2006 Childhood and Adolescent Immunization Schedule and is recommended by the Advisory Committee on Immunization Practices (ACIP), the American Academy of Pediatrics (AAP), and the American Academy of Family Physicians (AAFP), and the Center for Disease Control (CDC). What amazed me is that none of our leading medical society organizations feel it to be necessary to “mandate” vaccines. So who’s mandating them? Why? and more importantly, what rights do people have? As it turns out, people have very few to no rights at all depending on the state that you live in regarding whether or not parents want to vaccinate their children or if parents choose to only vaccinate their children with certain vaccines.

In many states you can file for religious exceptions, but in most cases parents are still forced to defend their religious beliefs to their school district, and if they don’t believe in your religious beliefs they can refuse your religious exception, and therefore refuse an appropriate and fair education to the child. There have been many cases of schools even going as far as calling Child Protective Services (CPS) on the parents for endangering the welfare of a child.

In West Virginia and Mississippi, applying for a religious or philosophical exemptions is simply not an option. Both states have outlawed these exemptions. What about parents who choose to wait to vaccinate their babies and spread out the vaccines over more time? According to the CDC’s Recommended Immunization Schedule, the first dose of the Rotavirus Vaccine (Rota) series is usually administered by 6 to 12 weeks. The CDC also emphasizes not to start the series later than the age of 12 weeks. This vaccine is supposed to be administered at 2, 4 and 6 months of age. Are the pediatricians informing the parents or are they even aware that CDC’s data on safety and efficacy outside of these age ranges are insufficient?

by Evelyn Ain

There is so much emphasis on early detection and early intervention, but what about our older children? What about the adults? For years now, I’ve tried to figure out why our society turns a blind eye when it comes to our older children with developmental disabilities.

It’s also not uncommon that teenage children no longer receive home services for no other reason other than their age. Why is it that a 15- or 18-year-old no longer receives home services? It’s amazing to me that a 3-year-old child can get as much as 40 hours a week of services such as speech, occupational therapy, physical therapy, and even special education and yet older children are not given the opportunity to benefit from these same services. When and why exactly do the services start to diminish?

Many parents say that once their child turns 5 and is transitioned into CSE (Committee on Special Education), the committee then decides that the child no longer needs the home services because they get those services and more in school. The CSE usually consists of school personnel, such as one or more therapists, a teacher, school physiologist and special education chair. How qualified are they to be making these crucial decisions, and are the decisions based on what’s good for the child or the good of the district’s budget?

I would really like to see the same emphasis that’s placed on early intervention to be given to our older children and adults. We can’t ignore the importance of therapy when we know that our children may regress and often do. That needs to stop.

Cathy Moriarty-Gentile is a very special lady. After working with UCP (United Cerebral Palsy) for years, she has agreed to be Autism United’s national spokeswoman. Autism United (AU) is a not-for-profit national organization whose mission is to better the lives of our children today. AU is a new national coalition that has been formed to bring together many individual organizations into a cohesive force to fight the autism epidemic.

Moriarty-Gentile will make many wonderful announcements throughout the year of how AU’s efforts are helping to better the lives of children today. Cathy will also be honored by Nassau County’s AHRC chapter, recognizing her for her efforts within the developmentally disabled community.
Read more about Cathy and her efforts in this issue of Spectrum and stay tuned for AU events featuring Cathy in the near future.

by Evelyn Ain

It’s hard to believe that a new school year is upon us. Some children will continue in their current schools, and some children will be starting new programs in new schools. But as we all know, transition is not only hard on our children but can be very stressful on parents and families.

Stress is something that parents of children with special needs are all too familiar with. In many cases the stress of raising a child with special needs takes a toll on families. Many people have used the term “we are divorced from our family” when referring to spending holidays and special occasions together. Many times family members don’t always understand the child’s disability and why the child can’t sit at the table and have dinner with all of us. Why isn’t the child playing with his or her cousins? This happens over and over, regardless of the amount of times that it has been explained to them.

The burden of justifying our child’s behaviors, actions, and their needs is extremely stressful. Parents find themselves continuously fighting for services, classifications, and appropriate school placement. In many cases all this fighting takes a toll on marriages.

I find myself continuously correcting and explaining to people that when they refer to our children please always refer to our child as a person first and the disability second. I must admit that I get very aggravated when I read reports by teachers, therapists and doctors referring to my son as the autistic child, or autistic boy, or I hear people say the autistic children.

I would like to see society accept our children as individuals with disabilities and not as disabled individuals. It’s our job as parents to make sure that we correct people and ask them to use respectful language when referring to our children. Children with mental retardation, children with Down’s syndrome or children with autism are exactly what they should be referred to. I think that if we refer to all special needs children, as mentally retarded children it is disrespectful.

Artificial Vitamin C
I got a call from my mother-in-law who pointed me to an article about the apple juice my son drinks. She told me that the label says, “Made in the USA,” but the bottle and its contents are made in China. Since my son drinks only this one brand of juice, she decided to call the company and get a clarification on exactly what the juice is made out of. I always thought that I was giving him a good brand. After all, it does say 100 percent apple juice and Vitamin C on the container.

After many phone calls we learned that everything takes place in China, including the growth of the apples. We don’t know where the water comes from. The Vitamin C? It’s in there, but it’s ascorbic acid, which I learned is artificially added. And, yep, it’s made in China. The problem with this is that China does not have any testing on chemicals that are used in their products, so whatever is getting used in my son’s apple juice is never really explained. Shouldn’t we be asking what exactly the Chinese are using to make their products?

Our job as parents never gets any easier, but I do believe that we learn how to better understand and fight for our children’s needs and health issues.