I Write With The Perspective Time Brings

Yeah, this is me sleeping.

I know, this story is getting tedious. It was tedious going through it and it is getting tedious retelling it. I guess you could say there is a life truth in what I just wrote and that is, well, sometimes life IS tedious. Sometimes life can be outright drudgery. I have come to accept if my life is a bed of roses, then those beautiful and fragrant roses are also full of pokey thorns.

The idea, I think, is rather than fight the existence of tedious, to accept that it exists, work through it and remember, when in it’s throes that, “This too shall pass” and on the other side of tedious, there will be better times. The secret, I believe, is to know how to be content through both the good times and the tedious times. Easier said than done, I know.

But you see, that is one reason why I shared this story, tedious as it may have been, because it was from these events that I learned “This too shall pass” – because, dear reader, it did. From the horribleness that was 1st grade and 3rd grade for my son, good came. A wrong was righted. A school district that thought they could ignore the needs of a child learned they couldn’t. They learned they had to do the right thing. They had to do their best to help my child. And finally, with force, they did. But from that force, came an underlying attitude change, and even though there were still problems along the way, those problems were more easily solved. A depth of caring that was not there before, emerged. It changed for Teddy, the first child diagnosed with Aspergers our school system ever served, and maybe, because of Teddy, the system and the environment improved for the next child with Aspergers.

Just the thought of that brings tears of joy to my eyes.

Maybe, just maybe, because we fought, because we didn’t give up, because of what Teddy endured, our local schools are a little better for a child.

There is nothing tedious about that.

*   *   *

May 2. 2000

To our attorney from the School Board’s attorney

Re: Teddy v. County Board of Education

This letter will serve as the settlement agreement in the above-referenced due process hearing request. If your clients are in agreement with the settlement as detailed in this letter, please have them execute the letter and return the original to me. I will have the Superintendent execute the agreement and will forward a copy to you. The terms of the settlement are as follows:

1. The school system has convened an IEP meeting to develop an IEP for the remainder of the 1999-2000 school year which focuses on one or more of the behaviors relating to anger management. It is agreed that a functional behavioral assessment will be conducted after the 2000-2001 school year begins.

2. It is agreed that the IEP for the 2000-2001 school year will be developed prior to July 1, 2000.

3. It is agreed that the school system will provide in-service training to the teachers and principal who will be dealing with Ted during the 2000-2001 school year. It is further understood that a minimum of four hours of in-service training will be provided and the in-service training will be completed before the 2000-2001 school year begins.

4. It is agreed that Ted will be provided with an aide for the first eight weeks of the 2000-2001 school year, with the IEP committee to determine at the end of that time to what extent an aide continues to be required.

5. It is agreed that the school system will reimburse the parents for one half of the cost for weekly counseling sessions. The cost to the school system for the weekly counseling sessions will not exceed $55.00 per week for a period beginning April 10 and continuing through August 21, 2000 with the understanding that the total cost to the Board for counseling will not exceed $1,155.00. It is further understood that the parents will submit invoices showing the date of the counseling sessions to the Special Education Director. It is further understood that the agreement to fund counseling at this time and under the terms set forth in this letter shall not be construed as an agreement by the Board to fund counseling in the future.

6. It is agreed that the Board will pay reasonable attorney’s fees and expenses in an amount not to exceed $1,913.44.

7. It is understood and agreed that this settlement constitutes a settlement of any and all claims which could have been brought on behalf of Ted by his parents in the due process hearing request. It is further agreed and understood that the parents of Ted will dismiss the due process hearing request.

Next: Leaving 3rd grade and lawsuits behind to meet Rainbow Woman and HIV Guy. A funny special education story about how life reminds me to have a sense of humor while simultaneously showing me what I’ve got really ain’t so bad.

p.s. Now, the tedious has passed, and on the other side is something to enjoy. Here, for you, is a Bette of Roses…

How I Came To Accept, And Love, My Head Of Grey Hair

rotatedframedcharlotte

Last Thursday I got my hair cut short.

I mean, REALLY short.

We had to go extreme because I wanted all the hair color cut off.

You see, I got my first grey hair when I was 19 and I have been coloring it since my mid 20′s, twenty years now, and well, I am sick of it.

So I got it all cut off. Continue reading

Almost There: Our Attorney’s Response To The Proposed IEP

I am posting this ‘almost there’ correspondence our attorney Suzanne sent to the school board’s attorney for two reasons…

Reason #1  To continue sharing the paperwork involved in a due process hearing. 

Reason #2  This particular letter shows how Suzanne “gets it.” SHE UNDERSTOOD what I had been feeling, what I had been saying to the school for almost two years and to be understood by an attorney, with the influence to get the school to listen, meant Teddy was finally going to get the support he needed.

Let me get on my soap box for a moment… Continue reading

Carving An IEP Like Michelangelo Carved Marble

I saw the angel in the marble and carved until I set him free. Michelangelo

As part of the Due Process Settlement the school system sent us a proposed IEP for the remaining eight weeks of our son Ted’s 3rd grade year.

It contained 20 benchmarks.

20.

Can you do 20 things at once?

Heck, can you even REMEMBER 20 things?

I can’t.

Imagine you were a teacher and had 20 kids in class. You had 20 kids to manage. 20 kids to educate. How could you be expected to remember 20 separate IEP benchmarks for just one of those 20 kids?

HA!

Yeah.

That was my thought too. Continue reading

On Why I Don’t Compare

When the student is ready, the teacher will appear. Buddhist Proverb

When Teddy was 3½, before he was diagnosed with Aspergers, our Nurse Practitioner referred him to an Occupational Therapist.

I had no idea what an Occupational Therapist was. It seemed a rather odd person for a three-year old to see. Like maybe you went to one if you needed career counseling. After two years of twice a week visits, I knew exactly what an OT was.

Together Teddy and Susie accomplished a great deal. He established hand dominance, learned to cross midline and improved his ability to motor plan. Susie also helped me understand better some of Teddy’s frustrations. And it was during these visits, sitting in the waiting room, I came to know one of the most significant women of my early journey in the world of disabilities.

17 year later, as I vividly recall Joanie, I smile and my heart warms.

Joanie’s son John’s appointment was right before Teddy’s and as we were the only two in the waiting room, we began talking. Soon, after John was done, Joanie would stay through Teddy’s appointment. And soon, Teddy and I came early so Joanie and I could talk through the entirety of John’s appointment. One and a half hours, two times a week, we talked.

It was our therapy.

Joanie was the first and only mom I knew who had a child with a disability.

Although we lived in university family housing, surrounded by children, I knew no one dealing with similar issues.

And although Joanie’s challenges were different, John had Down Syndrome, she faced the same challenges.

We understood each other like no one else understood us.

I don’t think a mother ever forgets the first mother they meet who understands. Who you don’t have to explain to, who you aren’t embarrassed around, who has the same fears you have.

In addition to having special needs sons, when we met we were both pregnant and delivered our daughters just two weeks apart. Among our many discussions was the topic of introducing a baby to our families and the new challenges this would bring.

But of all our talks, the one I remember most was of the day we compared and contrasted our sons – one with Autism and one with Down Syndrome.

Before I go on, it is imperative I say the conversation I am about to describe was one of the most open, honest, and egoless conversations I have experienced in my life. It was two mothers, two women, understanding one another’s differences and through our differences we came to see our commonalities.

By the time this conversation happened it was the summer of 1996, more than a year after we met, our daughters were approaching their first birthdays and Teddy had been diagnosed with Aspergers.

I spoke first of my experience with Teddy. I spoke of the judgments he received, mostly from other mothers, because they did not understand him. He looked perfectly normal but his behavior was anything but, he did not meet their expectations and because of this he was ostracized. I hated the condemnation, I told Joanie, yet at the same time I understood the cause of it and I hated that too. I so much wanted them to know Teddy and see the smart, creative boy under the violent external behaviors. I wanted them to understand how conflicted, how confused my little boy was and how he needed understanding and that didn’t happen, and we became an island, in the sea of kids and mothers that was university family housing.

Then Joanie spoke.

And she too talked of judgments, but of a very different kind. She spoke of how, when some mothers saw John, they saw the obviousness of his disability and because of this obviousness, he was either avoided, or if they were near, they were uneasy to have their children around him. They had low expectations of John. He had Down’s, and thus he was mentally retarded and capable of very little. That was the thought process she continually encountered. They didn’t give him a chance. Seldom was he given the opportunity to achieve anything more than the lowest of expectations. How will he ever have the chance to be more if he is automatically, after just one look, treated as incapable? People would rather just ignore him, treat him as if he is not there, assume he has nothing to give and is not worthy of any effort. He has so much to give. He is so sweet and so much wants the attention of others. It hurts that he doesn’t get to experience friendship. It is just the three of us most of the time.

And my island suddenly formed a bridge to Joanie. I felt pure love for another human and I saw how we all have struggles.

Struggles come in different shapes and different sizes and struggles are completely unavoidable. We can’t wish struggles from our life. We can’t pray struggles away. No. Struggles are like death and taxes and change, they are a certainty. And because we all have struggles, it is energy wasted to judge or compare our struggles. There’s no place, no purpose for that. Struggles just are, and for what ever reason the ones we get are the ones we get. We can’t answer why, so why compare. Why strengthen the power of struggle by using it as a means of comparison.

Instead, as I listened to Joanie’s variation on her special needs struggle, I saw clearly how hers were hers, and mine were mine, and how there was a beauty not in the lack of struggles, but that we were there for each other because of the struggles.

We were sisters, introduced by struggle, and joined by acceptance.

So I don’t compare. I was given what I was given for reasons completely beyond my ability to comprehend. Instead I choose to try to use my energy to embrace the many lessons learned on this special needs journey Teddy has led me on. And what an education it has been. You could say it is the education of my lifetime.

You can not travel the path until you become the path. Buddhist Proverb

My view as I was writing