Oil for the Squeaking Wheels Only

One in 150 children are now being diagnosed with autism~an alarming rate that puts us in near epidemic crisis. For Missourians requiring support for their child with Autism, getting that help can add more stress and anguish to an already strained situation. Given that Missouri lags far behind the nation (48th in the country for special education funding) in supporting people with autism, we are poised to pay a hefty price tag for the lifetime~in excess of $3 million~of each and every child who does not receive intervention and assistance at an early age. Though we realize this in fact, getting support and attention is an exhaustive and ongoing goal of those who have no choice but to face the burden of autism.

IEP's (Individual Education Plans) are supposed to be an important tool in guiding families with children with autism on a path to future success. However, Lee's Summit Autism Support Group, a website dedicated to serving families in a suburban area, portrays an all-too familiar depiction of how these meetings typically play out:

"So you sit there and these people tell you that your child is never going to be normal, which is a very hard thing to handle," Tucker said. "You assume that these people are giving you all the right information and you believe them and you sign on the dotted line. What you never find out is that those people are never going to give you what you need until you're smart enough to know what you need and you fight for it."

Unfortunately, it's one fight after another~and the squeaky wheel gets the oil. There is hope for the future however, as Missouri's senator Michael Gibbons has stepped to the forefront of the battle to serve the underserved. His MO Blue Ribbon Panel on Autism's Report has made 36 recommendations that, if incorporated into our legislation, could make Missouri a leader in serving the needs of those with autism.

The legislators convene on this very weighty topic come January and all parents of children with autism should unify their voice with a resounding call for choice and change in our system. Only then will we see the true hope for all who face the trials of serving their loved one with autism.

The Missouri Blue Ribbon Panel Reports...

The Missouri Blue Ribbon Panel on Autism released its report on December 18. The report includes 36 recommendations to increase and enhance services for children and adults affected by an Autism Spectrum Disorder (ASD) throughout Missouri.

The panel has identified several critical issues that deserve resolution. I hope the state legislature takes a serious look at this report and spends time evaluating each recommendation.

More than anything, it seems that inconsistencies in the quantity and quality of services throughout our state have been brought to light. This is especially true when it comes to educational opportunities. School districts do not all provide the same level of support to students who are affected by an ASD.

Early intervention is key and yet it can take months for a child to receive a comprehensive diagnosis. Time is precious and these kids can't afford to waste it on bureaucratic red tape. Even worse, often after a child receives a medical diagnosis he/she has to jump through more hoops to receive an educational diagnosis through the local school district. Tick tock, tick tock. More time is wasted and services are denied to our most fragile citizens - our kids. We can do better. We simply have to do better.

Children with special needs deserve the right at a decent education

Children with special needs deserve the right at a decent education. The time they spend in school should be well spent. Unfortunately, this is not always the case. Some schools are simply not providing these students the tools they need to get properly educated. These children and their parents should have the option of attending a different school, whether it be private or public. Vouchers would give them this option. Unfortunately for these children, this is not currently an option in Missouri. Georgia's new Special Needs Scholarship program is trying to do just that. The new K-12 voucher program, which is modeled after Florida's program, gives families the special education children choices by offering them tuition vouchers that can be used at private schools. While there are many kinks to be worked out in the program, it is starting to help families. Thousands of families are applying to get a voucher and the state hopes to serve more of them.

Imagine if Missouri could pass similar legislation. The children with special needs would have a chance at a great education, one that can properly serve their needs. I know a mother in my small town who would jump at this opportunity. Her daughter suffers from a form of autism and her public school does not have the capability to give her a decent education. However, there is a private school about 25 miles away and she is willing to make the drive if only she were given some funding. The voucher program would do just that. I hope for her sake and for others, Missouri can pass legislation that can help.

Special Needs Students Deserve a Chance!

Not that I am here to promote one presidential candidate over another, but several of Rudy Giuliani's points hits home for me. Rudy says "We're going to take the decision-making and we're going to put it in the hands of the people who really know the children, really love the children, really care about the children, more than anyone else: the parents." In addition to creating federal school voucher programs and expanding charter school options, another goal is to:

"Provide Choice Within The Disabilities Education Act: Rudy's plan will allow states to use Federal IDEA funds to enable the families of special education students to seek out appropriate placement in both public and private schools."

I live in a small rural area of Southwest Missouri. Not only do we not have choice for every child, we do not even have a choice for those children with special needs. My sister's child was diagnosed with autism three years ago. Her daughter, Susan, has an IEP (Individualized Education Program). This is a good program, although children are not always getting what they need. The public school we have is not suited to educate Susan and others like her, properly. If a plan like Giuliani's were in effect, Susan and others would be able to transfer to other schools, be private or public, that can do what is needed. A child with special needs has every chance of becoming successful later in life, but not if they are not given the tools to get there. The parents, who know their children the best, should be able to decide if their child is getting what is needed. Why should someone else determine the fate of these children?

Educating Autistic Children...Making it Easier

Autism worries are growing in this country. Unfortunately, the causes are not very clear. There are debates among the professionals on whether certain components of vaccines are causing it or not. There are debates on the best way to serve the child suffering this condition. There are debates on what the best education program would be. But one thing is for sure, it is a growing problem that needs to be addressed. KOMU has recently dedicated a site to get people involved and informed.

Parents with children suffering from autism or another disability have many difficult decisions to make and encounter obstacles every day. One thing a parent should not have to deal with is a problem with getting their child a decent education.

Meeting the educational needs for any child poses problems. The schools are not 'one size fits all'. Meeting the educational needs for a special education student can have more issues. A parent should be able to choose the proper place for their special education child to learn. They have every right to succeed in life and should not let the bureaucracy ruin those chances.

Missouri Needing Assistance for Special Education

In 2004, the Individuals with Disabilities Act (IDEA) was amended requiring the Secretary of education to determine if each state is meeting the requirements of IDEA. The state must compile an Annual Performance Report which discusses its progress goals established in the State Performance Plan. The Secretary has four categories each state will full under: Meets the Requirements, Needs Assistance in implementing, Needs Intervention in Implementing; and Needs Substantial Intervention. Missouri fell under "Needs Assistance" for both Part B and C of IDEA. A letter was sent to Missouri regarding this.

The U.S. Department of Education says:

The IDEA Part B, Sections 611 and 619 formula grant programs assist states in providing a free appropriate public education in the least restrictive environment for children with disabilities ages 3 through 21. Part C refers to the IDEA Part C formula grant programs, which assist states in providing early intervention services for infants and toddlers (from birth through age two), and their families.

It has finally been brought to the attention of the government there is a problem with how our state handles special education programs. We need reform in Missouri. We are listed as needing assistance and that should be a red flag to all Missourians. Wouldn't it be nice if every child with a learning disability had a choice (or their parents had the choice) to give them a decent education. Some schools are just not up to educating a special needs child. That child should be able to transfer to a school that can, whether it be private or public. If the government is paying for the child to attend a public school that cannot meet their needs, that child should be able to attend any school that can properly educate her/him. With some sort of school choice, this could be possible. All children deserve the chance at a free and appropriate education, right?

Readers Write - Again

Kelli Jefferson:

I just heard on the news tonight that the medical profession is making HUGE strides in following what happens in the brain when it comes to autism. This is a breakthrough because they can begin helping children at a much younger age in their development and eventually drugs. This is great. The next logical step, I would think, would be to bring that knowledge into the special school systems so they can apply this information accordingly.

I wonder how many parents out there are not aware their child may be affected and considered a "special needs." People are too afraid of their children having these labels. They aren't bad labels...they simply are facts of what your child has and may need to learn a different way. Thank goodness the medical profession is finally realizing this. I believe some of our smartest, most creative artists, poets, business men have what we consider "special needs." Wonder where they would be placed in schools today?

In someone else’s shoes

Today I tried a little experiment: researching individualized education plans, or IEPs, from the perspective of a parent who needed to get a specialized education for their child and had no prior information. Here are the things I learned in a nutshell:

1) To get any relevant information, you first have to know that what you’re looking for is called an IEP.

2) The paperwork is pretty horrendous, and very intimidating. It is nine pages not including specific attachments and a case worker would have to fill it out.

3) There is a lot of jargon that made me feel daunted—I’d finally found what I was looking for, but it was over my head.

4) If I wanted to be able to track my child’s progress, I’d probably need to attend at least one seminar on writing an IEP, but there are quite a few seminars offered about many other things I should know about what services my child has access to.

It was an interesting exercise—and I’m sure if I had a child who needed an IEP the exercise would have been exhausting and I would have had many more questions (but I also would have been more aggressive about finding answers). I would have loved a hotline where there was a dedicated expert to talk me through the IEP process instead of me stabbing in the dark for an afternoon. I’d like a to a more in-depth look at what kind of energy and time commitment it takes to learn the system for special needs education, then make it work for your child, and I’d also like to learn from parents who have gone through it and what advice they have to offer.

Blue Ribbon Panel on Autism

November 5th was the final committee hearing of Missouri’s Blue Ribbon Panel on Autism. Keep your eyes open for resolutions and recommendations.

Some background on the panel:



50 Recommendations for Autism Services
Monday, November 19, 2007, 10:01 PM
By Bob Priddy
A special blue ribbon state panel on autism has about 50 recommendations for improved diagnosis, services, and opportunities for those with the disorder.
The Blue Ribbon Panel wants a state Autism Commission that will make sure all of its work does not wind upon a shelf with other dust-gathering committee and commission reports. Committee chairman Scott Rupp (of Wentzville) says the commission will make sure the blue-ribbon panel's work will continue

Rupp says the panel has found there are a large number of agencies, organizations and services working with or for those with Autism. But there's no single list of how money is allocated to them.

And even with all those organizations and agencies, there are still people falling through the cracks. He says one of things the panel wanted to do was shine a light on those who are not helped despite the large number of agencies, services, and organizations offering aid.
The panel recommends more attention be paid to early diagnosis and lifetime services. It suggests special programs encouraging employers to hire people with the disorder...that the law be changed defining autism as a medical diagnosis--which Rupp says is the key to getting insurance coverage for treatment.

Although the commission makes about 50 recommendations, the only one considered a priority is the formation of the commission. Rupp says the commission considers all of the other recommendations of equal high importance.

From: http://www.missourinet.com/gestalt/go.cfm?objectid=5B055B54-FFED-C4DC-5CC878D5005B3CF6

Saturday, October 6, 2007
My Speech Before the Missouri Blue Ribbon Panel on Autism
I am the mother of three beautiful children. My twin daughters came into my life through adoption. My son came into my life through birth. My children are precious and have brought me more joy than I couldever imagine.

My son is 14 years old. He has been diagnosed with Early Infantile Autism and some of its comorbid conditions. He is honest, fair, and intelligent. He also will probably never leave home because he didn't receive the early intervention that he needed to become successful. Before my children were born I was working for a Fortune 500 company and was making a very good wage. I am now working for a grocery store making $7.50 per hour. I am unable to make more than that for several reasons. They all have to do with my son's disability.

I co-founded the Lee's Summit Autism Support Group because I was frustrated and didn't know where to go for help. I met another mother on a website for parents of children with disabilities. We quickly became support for each other and spoke on the telephone frequently.We started our group because we knew that there had to be other families out there that were suffering the same way and needed the same support that we were looking for.

I will not begin to describe the trials and tribulations that we have encountered trying to get our support group going, but I can proudly tell you that through persistance and sheer will we have a wonderful group of parents now.

This leads to my issue with employment. I can not give up my support group and it takes a huge amount of my time. I am willing to accept that challenge and I make the sacrifices. I can do a lot of the work when my children are in bed.My son is in high school and because there is such a lack of knowledge about autism, he misses 30 days of school each year. This is because his IEP isn't being implemented, or his teachers don't understand that children with autism need to chew and he is reprimanded for chewing, or he shuts downand his teacher writes him up. This all leads to him becoming physically ill and having to be picked up from school.

Then there are the appointments with doctors to try and find the right medication to address some of his issues. This is no small task and requires diligence and time. I can't work for a company that expects me to be at work every day. I need to be available during school hours. I can only work weekends, evenings, and nights. This has lead to me making half of what I made over 20 years ago and missing out on a lot of family time with husband and children.

I am fortunate. My husband makes a good living and I can afford to make this sacrifice. For years I was able to stay home, but with the present economy, I have been forced back to work. Some families can not.Some families are made up of single mothers that are in fear of losing their jobs when they are called to the school to pick up their children.

I stand before you a mother that felt she knew everything that she needed to know to raise children. The day that my son was born, that all changed. I have become an advocate and a lobbyist. Not because I enjoy it or even want to do it. My son's life depends on it.

This affects every part of my family. My daughters feel that I love my son more than I love them because he is biological and they are adopted. They think that all of the time that I spend fighting for my son's life is about favortism. They are losing the right to have their Mommy be what she should be. They had to give up part of their youth because I have to fight for my son.

This is something that I can't take back or do over. Children shouldn't have to pay the price for the inadequacies of society.

I am holding two pictures of my son. The one on the left is how the world sees my son. The one on the right is how I see him. Thank you for your time.

Posted by Sherri at 10:15 PM

Labels: sherri, speech
http://combatingautismfromwithin.blogspot.com/2007/10/what-my-son-has-taught-me.html

A Reader writes...

Susan Meyers says:

I must say, I have never written to a blog before on something so personal. BUT here goes. We all heard about the kid who shot randomly at the Omaha, Nebraska mall last week. Sad, I don't even know his name, however they (the media) keep saying "he had ADHD", "kids, especially boys have such problems with ADHD." I am so sick of the media clumping EVERY CHILD with a special needs into the same category as this kid.

If you read and listen, he was lost "in the system." I think a lot of systems to be honest. Where was the school system? Where were they to help this kid? I'm not blaming a school system, but my gosh you have a child a good 6 hours a day, did you see NOTHING? Did you recognize NOTHING? And if you did, what did you do to help him? What about all these kids with ADHD, autism, learning disabilities, etc.? We NEED THE SCHOOLS to help them get through. You do realize MOST kids can grow out of their ADHD. Not entirely, but they start out 3 years less mature than their piers. Eventually, they can catch up, even out, whatever the correct words are some even don't need medicine anymore.

BUT until that happens we need schools to help them through. So that when they graduate they don't feel like they aren't smart enough to go on. They need to know they are NOT losers, they need to know what they are good at and focus there. We need to help them find a path to follow that is good for them. Please don't give up on these kids. Please help these kids. We don't need anymore holiday shootings at the mall. My son has ADHD and he struggles everyday with self esteem and some depression. I wish the school could/would work with me to find his path. I wish someone would.

Special Needs Students Deserve a Chance!

Not that I am here to promote one presidential candidate over another, but several of Rudy Giuliani’s points hits home for me. Rudy says “We’re going to take the decision-making and we’re going to put it in the hands of the people who really know the children, really love the children, really care about the children, more than anyone else: the parents.” In addition to creating federal school voucher programs and expanding charter school options, another goal is to:

“Provide Choice Within The Disabilities Education Act: Rudy’s plan will allow states to use Federal IDEA funds to enable the families of special education students to seek out appropriate placement in both public and private schools.”

I live in a small rural area of Southwest Missouri. Not only do we not have choice for every child, we do not even have a choice for those children with special needs. My sister’s child was diagnosed with autism three years ago. Her daughter, Susan, has an IEP (Individualized Education Program). This is a good program, although children are not always getting what they need. The public school we have is not suited to educate Susan and others like her, properly. If a plan like Giuliani’s were in effect, Susan and others would be able to transfer to other schools, be private or public, that can do what is needed. A child with special needs has every chance of becoming successful later in life, but not if they are not given the tools to get there. The parents, who know their children the best, should be able to decide if their child is getting what is needed. Why should someone else determine the fate of these children?

Virtual Schools An Option for Special Needs?

In the state of Missouri, parents of special needs kids are working very hard to get the right 'fit' of education that assists their child's particular needs. They are very frustrated as the teachers who are 'trained' in special needs ed. have the equivalent of 1 class (See: " Teaching Special Ed Teachers Needs to Happen"; LARRY~Link here to the following post on Missourians Supporting Teaching Excellence) and they are supposedly qualified to facilitate the needs of special ed students. Needless to say, these parents meet one frustration after another. It is truly heartbreaking, as anyone who has witnessed their friend or family member fumble through our inept public education system can testify.

Parents of special needs children located in suburbia, with sufficient educational funds and plenty of schools, still find their special needs are unmet.

One alternative that should be made available to these parents is virtual schools. Allowing the parents to make the choice on behalf of their children is KEY. Virtual schools have the ability to address specific interests and serve educational desires and needs that a typical 'one-size-fits-all' public school simply does not have the resources to do. By redirecting the funds that support these children, the state could actually save money in a number of ways. By allowing children with autism to gain academic advancement on their own time and at their own pace, maybe the parents, student and teacher could enjoy a little stress relief and get focussed on education again!

NCLB: Children with Disabilities--Things to Know

Our education system has been going through changes. Some changes have been helpful, while others have not. “No Child Left Behind” has been heavily debated. While it may have been started with good intentions, some feel the results were not great. We will see if the program sticks around and how, or if, it will be revamped. It also important for parents to know there are some things they should be aware of. Parents of children with a disability face many challenges, and they deserve a choice in the education for their children. According to Schwabe Learning, children with disabilities have certain rights under No Child Left Behind:

Students with disabilities (covered under the IDEA or Section 504) must be offered the opportunity to attend a school that has not been identified as “in need of improvement.” Districts must ensure that such students are provided a free, appropriate public education (FAPE) consistent with the IDEA, Section 504 of the Rehabilitation Act, and Title II of the Americans with Disablities Act, in their schools of choice.

However, these students do not have to be offered the choice of the same schools offered to non-disabled students. Districts may limit the choice options to those schools that have the ability to provide FAPE. However, as part of the required notice to parents, districts must explain why the choices made available to them may have been limited.

It is important for parents to know what their rights are. Their children with disabilities deserve a proper education.

LIfe with Autism Does Not Need to be Harder

Alfie & Autism

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This little boy faces a tough road ahead. It breaks my heart to think of the challenges he faces, the heartbreak his parents are up against, and the alienation he will face. Life will be difficult for children with autism; they should at least have some things that are not. Education should be something they can find easily. If their schools cannot provide them what they need, they should have the option of transferring somewhere else. According to the Department of Education, children with special needs have the right to a free and appropriate public education. A great education will be one thing that can help these children thrive, have chances like the rest of children… live to their full potential.

Students with disabilities vary greatly

Students with disabilities vary greatly in the educational setting that best suits them. Unfortunately, it is not a one size-fits-all solution. While some disabled students would benefit from being in a regular classroom, others may not. There are also some students that benefit from doing part-time in regular and part-time in a special education setting. While some parents may push for mainstreaming the child, others know their child will not do well in a regular setting.

A recent article in the Wall Street Journal addresses those concerns. A fully included student is one that spends at least 80% of their time in a regular classroom setting. Nationally, 54% of disabled students are considered fully included. New Jersey passed some of the first special education laws, setting an example for the rest of the states. Some laws require the public education system to pay for educating the special education students, whether it is in a public school, a special education school, or a private school. Recently, some people are pushing for full inclusion because of the costs. Mainstreaming advocates also feel children would thrive being around non-disabled children. But many parents disagree. They have witnessed what happens not only to their child’s grades, but also what happens to them as people. Many parents of special education children were noticing their children not fitting in, being ridiculed, and causing disruptions in response. These children were struggling academically and now were facing depression, aggravation, and sometimes aggression.

Bottom line is that parents deserve the right to make that choice for their child. The state should not decide what the best schooling method is for someone’s child. The parents should make that choice.