It’s no secret that the American education system is drowning under the increased cost of Special Education. And it’s no secret that educating children with Autism is expensive.
When a child is first diagnosed, let’s say at about two years of age, it appears the money, at least in New York State, is abundantly available for the sacred Early Intervention that professionals claim provides a child with the best hope for a future of learning. A Family Service Coordinator plops herself down at your dining room table, scribbles some notes, negotiates a little to give the appearance of fiscal responsibility and –voila! — your kid is set up with 30 hours each week of Applied Behavior Analysis, four hours of speech, two hours of occupational therapy and another two for physical therapy. Strangers are in your house from the time you shower in the morning until you’re ready to collapse in the evening.
And then, just as you’re ready to put three candles on Johnny’s birthday cake, you’re thrust into the world of the Committee on Preschool Special Education. Your Family Service Coordinator has moved on and suddenly you’re meeting with the folks who will be making decisions about your children’s educational services and placements for the next 18 years. But the big but here is that, for the next two years, they’re not paying for it. Because until a child reaches school age, five, the services are still paid for wholly by the state even though they’re managed by the locality. Since your local school district’s budget is meaningless, those thirty-eight hours of home services start to dwindle, but are by no means eliminated. The child is placed in a class. It might be within your district or it might be in a specialized school, but he’s there for six or so hours a day, so your home services are reduced relatively.
Some time passes and BAM! Five birthday candles. Welcome to the Committee on Special Education. The place where your child is formally assigned a disability that stays with them for years. And dictates funding.
“Ok, Mrs. TMR, let’s talk about how we will classify your daughter.”
“Huh?”
“Well, there are thirteen classifications in Special…”
“She has Autism.”
The chairperson of the CSE then turns to her late edition laptop and begins to type: Classification of student was discussed. Parents suggest Autism.
HOLD ON! We don’t suggest Autism to anyone.
You see, the same person typing on her shiny laptop also has the job of keeping the budget under wraps. (You can refer back to my second sentence now if necessary.) School administrators cringe at diagnoses of Autism. They freak from them. They get the heebie-jeebies as they head into Board meetings and need to explain that the money the Ivy League bound seniors were planning to use to hire a coach for Intel Science Competition Research Projects now has to go to hire another special education teacher because another kid came in and tipped the registration over the maximum number of classified children permitted in one section of Kindergarten.
But this whole spectrum thing creates an entirely different dilemma for Mrs. CSE. If a child has language, both expressive and receptive, chances are they will be integrated into the general education population.
That’s a good thing, by the way. We want our children to learn from their peers, and if they’re locked away in a room down the hall it’s never going to happen.
But what happens to a child with Autism in that classroom?
As a parent and a teacher, I see both sides of this situation every day. And it’s not always pretty. (We’re not here to hand out rose-colored glasses, we’re here to question stuff, right?)
The child with Autism, who may or may not hold his own academically, often presents significantly different from the typically developing child, whether this is their first year in the setting or they’re heading into fourth grade. With that comes frustrations, focus issues, meltdowns, self talk, perseverations about stuff that has nothing to do with what is actually going on in the classroom, social alienation and decreased self esteem.
For the general education teacher in the classroom, who is usually alone for a good chunk of the day, it leads to “how the hell am I supposed to do this?”
The typical children in the classroom are also deprived of what they need if the balance is askew. I was recently in a third grade classroom that has twelve special needs kids, twelve typical kids, one regular education teacher, one special education and four aids. If anyone reading this thinks this is a good situation for children, typical or with Autism, I invite you to come spend a day with me. The disruptions in that classroom are beyond words. Surely a lower ratio of special education students (which would require additional teachers) would be in the best interest of everyone concerned.
The reality of education and Autism is that most teachers, especially the senior staff members, are not trained in what we, as Mothers, do every day. And every night. Suddenly, the district wakes up and sends a teacher for an “Autism Training Workshop” or two.
Implementation starts. Everyone has to use the same language with Carolyn when she starts talking to herself. This is what we do with Johnny has a meltdown. If Stephanie won’t do her math work, we’re going to handle it like this.
And then the bell rings and THEY GO HOME. They watch reruns of Oprah, drink a glass of wine, chat online or go out to dinner.
I am not saying we don’t have dedicated teachers in our schools. I know we have many. But if you don’t have it in your home, where you lay awake at night fearing what will happen to your child when you are old or dead, you simply cannot understand the implications of Autism. You cannot understand what it does to a family.
I believe this lies in the hands of administrators and school boards. Budgets are balanced at the expense of our children and we, as parents, need to become more vocal to stop this. I have seen, over and over again, in both my child’s school and my workplace, that children with loud parents get the necessary support. Twelve children with special needs should not be in a room with another twelve typically developing kids. I don’t care what it saves the taxpayer. It does not work. For anyone involved.
~ Jerry
As a former school nurse (9 years) I heard many teachers in CSE and support team meetings say…”There’s nothing a little pill won’t solve.” (Giggle, giggle) I always commented on and corrected that narrow-minded approach. Aren’t our children damaged enough by manistream drugs and “interventions” ? The Applied Behavioral Approach was little different than what I see in mainstream medicine for other vaccine-caused disorders (like MS, Alzheimers, Depression, etc)……every specialist gets “a piece” of the action (and money) while the suffering patient never gets well. No one ever notices that ALL the various symptoms are related to a common causitive factor, and certainly no one will prevent or reverse the CAUSE. I’m with the person who commented that schools should pass up the funding they get for having fully compliant vaccinated enrollments to INSTEAD reap the savings of no longer encouraging people to inject the CAUSE of the expensive unmanagable disabilites! Just do the MATH! A penny of prevention is worth a billion dollars of rehabilitation. All the therapies “applied” to our damaged children is like training Pavlov’s dogs….without addressing the INTERNAL causes of autism we are expecting unrealistic “behaviors” on them. Like telling a blind person to stop bumping into things. Yes you can “train” them to know the maze and get around, but you haven’t restored their sight. We need to assert to the schools that they need to fight along side parents to get the medical field to face facts and end the criminally insane vaccination and other exposures to toxic metals and chemicals and food additives (glutamates and pesticides) that are killing our children’s brains and immune systems.
Nurses need to get on the patient side of the equation and stop being accomplices to the crime.
Any one else out there homeschool? Our girl is doing so well at home, we just couldn’t place her in a setting that so obviously wanted her only for the $. Yes, we could use a break, but not at that price! Also, ” inclusion ” against one’s will is really imprisonment, is it not?
Pingback: March 22, 2012: Jerry on Autism, Education and The System | The Thinking Moms' Revolution Starts Here
Exactly…
I always fantasized about what would happen if they big entities that are paying for the autism epidemic (The education system, the insurance companies) had the guts to research what was causing the epidemic. What if they used their economic duress or greed to get to the bottom of it and either make the creators pay or make stop?
But it IS a fantasy afterall and those entities have already found ways to limit access to services, even to the most deserving. It’s maddening.
This really hits home, Jerry. Well said.
I wonder what would happen if (when?) the education system woke up to the fact that vaccines are destroying children and footing them with the bill. I wonder if they would then stop enforcing the vaccine mandates and push school nurses to stop scaring parents.
I have heard that the insurance companies have spoken up about the issue in those closed door policy meetings. It was something to the effect of “we can’t afford this anymore”. So what do they do? They up your premiums and deductibles. Our deductible for out of network went from just shy of $400 to $1,000 with the turn of calendar page.
As for the schools, they also can’t afford it. So what do they do? In New York, they go to the Board of Regents and complain about the mandates for children with Autism. Like five days of speech per week. And what does State Ed do? They cut the speech mandate to two days. Who gets screwed? Our kids.
Insightful, and so very true. Having recently attended meetings such as the one you describe for my child with PANDAS, AND having sat on the other side of the table as a school social worker at both a segregated school for children with disabilities, and a fully inclusive elementary building, I am almost brought to my knees over the blatant disservices schools are providing to children who learn differently. Your thoughts do not only apply to children with autism and their families but to ALL children who do not fit the mold. I have been busy parenting for the last 15 years but, I really would have thought that schools would have made leaps and bounds worth of changes in the ways they educate these children by now. The numbers of us have increased dramatically. Why have their methods seem to have gone backwards? If they are not going to take responsibility for knowing how to educate our children, than we must become the experts. And we do become the experts, don’t we? Your last sentence sums it all up beautifully, “Administration should begin by listening to you.”
Thanks for your comment, Wendy. We need to get loud in order for them to listen to us.
Jerry,
I am not a parent of a special needs child (just want to get that out there so you can know at least a little about me).
I can say that I have been witness to special needs children in the classroom and it can be extremely disruptive with just one child that is acting out on a regular basis. I think it would be better to not have kids that are that out of control in the classroom because it seems to be way too much for them. I would suggest that it makes it harder for them – overwhelming – trying to make them conform to a ‘typical’ classroom setting. What are any of the children in that class learning at those times?
Also, for the ‘typical’ kids, I think it desensitizes them to certain things. I have on numerous occasions gone to see my child put on a little show for the parents and staff and had at least one child SCREAMING bloody murder, growling and crawling on the floor, only to have multiple staff and sometimes even the parent of the child have to literally hold him suspended in midair, everyone hanging on to a limb, while they attempted to calm him and keep him in the room. Meanwhile, the other kids are instructed to IGNORE this and keep singing or whatever. I don’t think this is a good situation. When I hear someone crying out for help, my instinct is to try and help that person. These ‘typical’ kids are taught to ignore it.
I don’t think that ‘integration’ means just having these kids all in the same room. There should be (more) meaningful interactions to the ability of the child with special needs. I have seen situations where these kids might otherwise be having a VERY difficult time, respond more positively to another child instead of an adult. Obviously the kids can’t spend their time doing that all day, but I think it would be better to have those children that act out more or have a hard time with over-stimulation be integrated for specified times in each day. I think everyone would get more out of it. Having more staff per child is helpful, but it isn’t going to stop the massive disruptions going on.
I believe a better way has to be found for the sake of all children. I don’t know what the answer is for this. I don’t believe there is a single solution because all kids with special needs are so different. I agree that the school system is behind on being proactive. I don’t believe that there are enough teachers or administration that have even adequate training. It has been my experience that parents of children with autism or other special needs are some of the most resourceful and involved people out there. Administration should begin by listening to you.
Administration generally listens to taxpayers. Sad, but true. And in areas where people are complaining about their property taxes, the solution, in the eyes of administration, is to cut staff. And that means more special needs kids in a class. If the taxpayers witnessed what you and I have seen, they may sing a different tune.
Having more staff per child would be helpful because if there were three children in a class with difficulties (screaming because they’re in so much PHYSICAL pain that they just don’t know any other way to express it, for instance), it would be better all around. There needs to be something in between a self-contained class and an inclusion class. Our kids do need exposure to typical kids, but perhaps they need an environment that is less chaotic.
But, even for children who aren’t not screaming or freaking out, I still stand by my opinion that twelve needy kids in a class is JUST TOO MANY. They still need more attention than a typical kid when it comes to learning.
Thanks for joining our conversation.
I wish I had found your blog years ago.
Our daughter was undefined and undiagnosed for years. We recently found out she has Mito. I have fought every windmill from public schools to Drs over the years- and when I read blogs like yours, I know I am not alone. Just yesterday a friend and I who found your blog around the same time were teasing (maybe serious) that we should start the “Houston Chapter of the Thinking Moms.”
Thank you!
Thanks for being here with us, Diane!