Salt Water . . .

Susan, over at Imperfect Genius, wrote a post called “Perspectives on Autism” that shared so many of my perspectives and beliefs that it awoke in me a lot of experiences I went through in forming them that I thought would be worth sharing.

She tried to get on an autism webring and was denied for not advocating enough. Susan tried to figure out the advocacy he was desiring for the webring and considered that he might be like some people’s typical reactions she had previously witnessed who feel strong and active parents should not “abandon the system and children”, but stay in to help. Susan doesn’t feel that way for various reasons, and neither do I. Here is some of what Susan wrote:

“I don’t know, I think he’s taking a narrow view of what advocacy looks like. . . .

These folks feel that I should be screaming for more and better services from the school. That I should have to deal with red tape and IEPs and ridiculous meetings where school employees talk down to you and insist that they know your child better than you do. That I should subject my child to an environment which doesn’t fit so as to create opportunities for change. . . .

Furthermore it’s our experience that schools do not want active, vocal parents to have any serious, effective involvement. It’s okay to be active in your child’s school life as long as you know your place – decorating for the Spring dance, holding bake sales to raise money for the library, donating time or space to after-school clubs, and chaperoning field trips. In all other areas they want to do things their way and do not want any interference. They’re not in the business of taking helpful suggestions.”

In the beginning of my autism journey, I totally immersed myself in understanding it, helping my child(ren) learn despite it, adjusting our environment and rhythms because of it, and overall just putting it as number one priority in our lives. Simply speaking, we were in crisis mode.

Well, after two years of this, we prepared for a move to another state. It was the first time I cried to leave an area. Once I settled into our log cabin home deep in the mountains of central PA, I finally was forced to stop long enough to face the grieving process. I did a lot of thinking, and sitting, and swinging my children. Frankly, it was the perfect setting for this period in my life with autism.

To make a very long story short, we found ourselves moving inward more toward “civilization” and my hubby’s work place (which had been an hour’s drive over a mountain) less than six short months later. It’s interesting how these physical moves depict such distinct stages in my journey.

Where before, I had thrown myself into the “doing” part of autism to deal with everything that had happened, now I had made my way to true acceptance, and was ready to embrace what came with that. Interestingly, I threw myself even deeper into the intervention aspect of autism than ever before, but there was a peace and calm to it this time, versus a “blinder’s approach” and freneticness. But, during this same period, I was also asking myself the questions, “Can I keep this lifestyle going without sacrificing other things that are important?” “When is it time to pace ourselves for the marathon versus the sprint?” “Is there a better option for our children with autism to assist us in balancing our lives and rhythms?”

Well, right after the move, I began to have promptings to put Adam in the local public school. Our school district was considered the best around, Pennsylvania had some of the best public schools in the nation, and our local elementary school was considered THE place to send your special needs child, because, for one thing, they automatically gave you a one-to-one aide. Well, after two withdrawals from the IEP process, and ten months later, I was finally willing to put Adam in school. Talk about advocating . . . LOL! At an IEP meeting once the third attempt was being made, the speech therapist, who was someone I liked, good-naturedly declared as she plopped Adam’s three-inch thick file on the table, “Mrs. Gaddis, this is Adam’s file. It is thicker than any child’s I have, and he hasn’t even stepped foot in the school yet. Let’s get it done!”

Let me tell you, I had really worked the system in my favor because of a very open-minded principal. I was sending my own aide to school with Adam, who had worked with him the previous five months at home, I would transition and train her myself in the classroom, and I had an open door policy. Couldn’t be better, right? Well, at first it was. I took at least a week to stay in the classroom training the aide, and then faded myself out. I was in constant contact with her as she came to my home after school to work with my other son with autism. She took notes as I instructed her to and worked on Adam being independent in the classroom the way I instructed her. The other aides for other children with autism sure saw the difference!

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Anyway, again, to make a long story short, within one month, a glitch occurred, and we patched it, another month and another glitch to patch, and the third month, a huge glitch happened, and we were walking out of the school. Tender egos and an inability to work with a parent as a true professional team member were the undoing. As the principal said to me at one IEP meeting in exasperation, “In 30 years, I have never seen a parent like you.” As Susan said, schools really don’t want a true partner in the education process, just a good follower.

Shortly after pulling him from the school after three months, we moved our family to North Carolina. Lo and behold, I heard that a charter school was being created by a mother of a child with autism in order to include our children in each and every classroom. Thus, the size of each class would be capped at 12, there would be a lead teacher and an assistant particularly trained to help our child with autism, and a behaviorist hired at the school to put together all the inclusion programming utilizing the intervention that had worked best for my two children most affected with autism. Couldn’t get better than that, right?!

Well, for the first year at this new charter school, there would be only four children selected to start the kindergarten grades and each year would build on the previous by adding four more. There would be a lottery to determine which children would get those slots. I decided to place Adam in the lottery, although he was technically supposed to be in first grade. He was selected! To make another long story short, he was pulled from this charter school within three weeks. (As a side note, unfortunately, three of the four children were pulled from the school within the first three months, and each of those teachers were fired, unethically and unfairly in my opinion!)

So, why was I prompted from my Heavenly Father to pursue this path when it was so unsuccessful? Well, I have several ideas why.

1) I am in a much better place to empathize with other families with children with autism who have been through the school system before deciding to homeschool. I have a yahoo group supporting families homeschooling their children with autism called aut-home-fam, so it is helpful in giving that support.

2) As I was trying to move into marathon mode versus sprint mode, I was struggling with the idea of doing “less” purposefully. I was afraid my perfectionism wasn’t going to allow it, and yet, if we didn’t pace ourselves, I felt we were becoming emotionally unhealthy. What these experiences showed me was this: “My less is more than their best.” (Being that I had experience with an “excellent public school” with the best possible supports in place, as well as a charter school specifically set up for my child and his preferred intervention, little to nothing was gained for Adam while attending.)

3) I confidently realized that homeschooling was the way to go for my children with autism, even at a “paced” level.

and 4) All of the stress and energy I had expended on making the above situations work, if only by a thread, was far better placed in making true and good progress forward for my children in an emotionally healthy environment that truly had his best interests at heart and was the truest “least restrictive environment.”

Stay tuned for the next half of this post . . . the homeschooling part!