A personal note: our struggle with Perry Township.

Image via WikipediaOur family is in the complaint process, I think our situation is probably extreme. It all began four years ago when a fellow RISE Parent brought me in to their group. We became aware of glaring omissions and violations.

Being a mom and a reformer at heart, I got training from a group called Insource and anywhere else I could get it, and I started working to improve our school's services and IEP.  Four years later, here we are. Still fighting to reform an even more broken system.

And I am tired. I'm tired because my son matters. It's a truth. Every child in RISE Learning Center matters. They deserve protection and service, true humanitarian service, and each of us should carry the burden of these kids' challenges and obstacles in our hearts, but there are a few who just. . . well, they don't. It's not a mission. It's a job.

If you have the mission. . . 
Your thoughts are preoccupied with how to do better each day for these sweet souls. You set your ideals far beyond the demands of your pocketbook or your ambition. You want for them what you want for yourself.

We want opportunity. All kinds of opportunities are denied those housed in this building each day. Some are denied the opportunity to communicate. They have no system by which to speak their wants and wishes, nor are they being given one. Some are denied the opportunity to learn by being placed in programs inappropriate to their needs. Some have been denied peace because no one stopped the bullying and beatings. The mission is lost at RISE, and it's not coming back very quickly.

Parents have gone to the DOE, the superintendent, Dr. Little, even the boards. Nothing changes. Okay, maybe it gets worse, but that's not change worth having. Families withdraw their children from this system and go it alone when no remedies emerge.

Ours may be next. How long can we wait, let Darrel wait, for adults to get the mission? How much farther behind can these kids fall before we act to stop systemic corruption and ineptitude? How much more can parents be expected to do? If we have to sue the school, which most can't, it will wipe us out with no likelihood of recouping anything without wheelbarrows of proof that we aren't lying or overreacting or reaching or exercising a vendetta or all the other things administrators say to steal our credibility or divert attention from facts.

Efforts to discredit the parents of RISE have never stopped and likely never will, but one thing is certain we aren't backing down. We have the mission. Each one us got it handed to us in a hospital both on the day of our child's birth and the day of their diagnosis. The mission to serve our children as advocate, parent, interpreter and care giver is a reality of every single day.

To parents facing the unfairness and discrimination of education systems gone awry, I say, " Never give up. Never surrender. Your children matter." Guess I just need the reminder.

Advocacy in today's school system

There's a burning need for advocacy in special needs education today. Areva Martin's book The Everyday Advocate highlights that need. Parents, overburdened emotionally and financially, are having to metaphorically take up arms in order to make the system run as it should for children.

One can't assume anymore that teachers and administrators are advocates for your child. The truth is they are employees of the system, and that system has cost management needs. Teachers go out into the work place with massive debts and a burning desire to teach. There is always a risk when they go out on a limb to recommend services in today's cost cutting environment. If you buck the admin too many times, you will certainly feel the sting.

Therefore, it's left to a parent to obtain an advocate or become one. The amount of time it takes to properly advocate for children is amazing. There are files to compile, phone calls to be made, negotiations to manage and research to be done. Parents must add this pile of tasks to an already growing stack of tasks they manage each day, and that's if everything manages to run smoothly. If it doesn't, one must prepare for mediation or due process.

School is not a cure. It's a minimizer. It minimizes the damage done to a child's mind by training that mind like an athlete trains their body.  It will play a crucial role in the coming years in educating parents to minimize at home. No doctor can have the kind of relationship with parents that schools have. Until we start taking our school's role in special needs treatment seriously and fund the programs, enforce the policies and train the staff, I'm afraid we will see an unorganized, failing system for years to come.

Hair pulling moment

Sometimes I like to do a more personal post. Our family has struggled with behaviors in school for the whole school year thus far, and it finally culminated in a case conference. Personal note, I dread case conferences.


Conflict isn't an issue for me, but I get pretty wound up at injustices. One of my biggest frustrations is that I so often have to be the catalyst for change in my son's education. One would expect that to be the professionals in charge. Our boy needs a new program, and I'm usually the first one to say it. 

He needs data collection and new methods. He needs more one on one help to conquer out short term eruptions and move us past it. He needs focus. Unfortunately, it feels like so many experience the frustration of knowing individual plans, individual kids,  don't get individual focus.


Because I'm watching parents who are uninvolved and seeing their kids education continue in a rut, without results to back up the plan, I know it can happen. If parents don't become the catalyst, children slip through cracks in the system simply because it's policy not to rock the boat.


While self-advocacy is essential for families to learn, it's sad that they have to learn it. Isn't it? Shouldn't special education students have plenty of advocates to go round?

All The Time In The World

Image by JasonTromm via Flickr

Summer should be a fun break for everyone, right? Here it is nearly June. The kids are home, and I'm already tired. After three days of end-of-school meltdowns, I'm pooped emotionally.

The park was fun for the fifteen minutes we were there. The house looks more like a hurricane blew through than before. Hurricane Darrel is destructive. At least, a 4. The worst part is that I know he's losing time. I'm no professional. I mimic the professionals as much as I can, but I know the expertise I need is not at my fingertips. For three months, we're on our own.


Speech therapy is easy, at least I think it is. It's all the rest; challenging behaviors, sensory issues, and loss of all that precious knowledge we put in his head all year. That is the frustration I have as a parent when lawmakers and schools in one breath push professional intervention, and express in the next that the family has undefined and undetermined responsibilities to fix their kids. My favorite is the phrase used so often that "school isn't a cure".

Newsflash. For most of us, there is no improvement bordering on "cure". Nobody gets a cure with autism. Education is, however, the only viable treatment for autism we have which is available for most regardless of cost. It is our best bet for reducing the cost effect of so many disabled entering society at one time. It's the difference between a child completely dependent on one-on-one aids for personal care into adulthood and a child only partially dependent and able to perform basic self-care. School may not be a cure, but, when you have a child with autism, you sure miss it when it's gone.

We All Have Autism.

Image by Sailing "Footprints: Real to Reel" (Ronn ashore) via Flickr

In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.

 1 John iv. 18.

He wasn't there again today!

Antigonish by Hughes Mearns

Yesterday, upon the stair,
I met a man who wasn’t there
He wasn’t there again today
I wish, I wish he’d go away...

When I came home last night at three
The man was waiting there for me
But when I looked around the hall
I couldn’t see him there at all!
Go away, go away, don’t you come back any more!
Go away, go away, and please don’t slam the door... (slam!)

Last night I saw upon the stair
A little man who wasn’t there
He wasn’t there again today
Oh, how I wish he’d go away

Sometimes poetry says it all, and, for some reason, this says it for me this week. Dealing with teachers and administrators can be easy, and it can be hard.

Today, I went to my son's school, and I was the man upon the stair. There was a visit in the offing of township special ed. coordinators, and a parent advocate in the building . . . well, it just isn't done. I'm not saying I was asked to leave, but had I been another parent of another type of disposition I would have been.

It's that old conundrum, go-away-come-back, that all parents involved with a child's education get to experience at least once. The pervasive attitude in schools these days is to complain that parents are uninvolved and to push them away should they get too involved. It's a frustration, mostly for the parent.

My suggestion is to always begin as you intend to go on. Start from the first to let your teacher's know you're there to stay. I tend to make the assumption that they want me there, even when I know they probably don't. No one usually contradicts my assumption and collaborative relationships are born.

How we overcome this institutionally, I don't know. As parents though, check in with teachers before you go in, but let them know you intend to check into the classroom occasionally and expect to be able to do so. It's so important, especially when you have a nonverbal child. Volunteer to read to the students or find a way to become a part of the classroom occasionally. You'd be amazed how much teachers appreciate this kind of support.

I Vant To Be Alone!

Cover via Amazon

And other things that aren't going to happen.

Today was not a typical day for me. It was much, much worse. Last night, I got to take an ER excursion that I can’t pay for to determine if I had appendicitus. Good news! I have a bladder infection that could take down a small horse! So that’s all right then.

Maybe it’s because I feel like I’ve been hit by a truck, or maybe it’s because I let myself watch too much news today. Whatever the cause, I’m mad. I resent that one day not cleaning my house means two days making it right again, not that it ever gets to right and stays there. I resent being a single mother with a husband because autism can be harder to deal with “for the man”. I want to scream that it isn’t fair, even though I hate the “Why me?” crowd.

Mostly, I resent that nothing ever gets finished in my life, and no one else is ever totally satisfied with my progress. A typical day for me starts at 6 Am with the chickens. Kid no. 1 must be dressed, medicated and on the bus by 6:45, then kid no. 2 has to get up and dressed. She gets dropped off at a private kindergarten, lunch in hand, because it’s that or I can quit the “at will” job I have to stay home half days every day. Then kid no. 3 must be put on a bus. At twenty minutes after eight, I am “at liberty”, unless I work that day.

At my son’s school, I substitute and love it because I know every kid, love every kid, and I’m an expert on disability thanks to my life. It’s also the only possible job and tons of us moms work there. Day care won’t take some of our kids, you know. Too disruptive. Legal liability and all that. You understand. So we work their schedule, their very abreviated schedule.

If I’m not working, I make coffee. I drink coffee and look around to decide what fire gets put out first. After coffee, I begin the first of approximately five loads of laundry that I will do today and fold as I can. I vaccum if I’m really lucky. I shampoo floors and couches and wash walls. This must be done at every opportunity since kid no. 1 can’t help but make food messes and touch EVERYTHING. If I could be really liberal in my thinking, maybe I could see it as concept art. Alas, that’s not me.

On days when I help in advocacy for parents, I spend time online or making calls. I try and set parents up with help where they need it. Occasionally, the need arises to organize a few barely attended events for parents who know nothing about the system yet, but need desperately to learn before it eats their child’s opportunity for growth alive. I wish that was over-dramatic.

But today, I didn’t get to do any of those things. I got to curl into the fetal position, until it was time to throw up again. I resent that too. Time away from that schedule for me is crippling. It can make my life ridiculously difficult for weeks to come. Add to it that I can’t afford to get sick. I can’t afford to die. What am I saying?

In the ER, I read “Overcoming Autism” while I waited for tests, then picked up my meds to scoot home just in time to medicate the unmedicated and put everyone to bed. My husband’s idea of supervision and mine do not meet.

You know what? I am technically unemployed, and one of those drains on the system everyone else gets so wound up about, but I don’t think I’m lazy. I’m too exhausted to be lazy, still how much of a failure can I feel like?

Then there are those people who overestimate my ability to tackle the symptoms of autism, including family . My son started pulling his pants down for no real reason this last week. Yeah, you’d think there would be a very clear reason, wouldn’t you? Every now and again, I don’t know he’s done it and a “window incident” occurs. Oh, there is no greater joy than having your husband ticked off because kid no.1 was in the window again. It’s my failure to control circumstances that put him in that window, I guess.

Here’s the thing; the amount of work it took to get him here is unfathomable. Repetitive tasks at the store and at home. Constant verbal reminders to do a thing. Nights when he had such sleep disturbance he slept ON TOP of me. There was screaming and police calls because people thought we were beating him or killing him. There were choices about side effects and outcomes. You can’t imagine what that’s like, especially knowing that the difference it all makes could be great or miniscule depending on the will of God. So, I guess what I’m saying is “ Get off my back, People! I’m working over here!”