They do happen.  The happy events happen from time to time. There are some positive outcomes sometimes, somewhere.  They might be temporary or they might be permanent.  But they are rare despite  the relative proliferation of such stories in all sorts of media. Any story about “recovery” from autism, is multiplied in TV programs or internet sites so often, that the false picture is formed.  Nobody wants to hear about lost fights, about daily humiliations of not being able to assure that your child is taught properly and not discriminated against in many unsettling ways.  If you don’t have a positive story to say, too bad.  It is your fault.  You are getting what you expected.  Yes, it is your fault.  You did not have positive perspective in the first place!

Maybe not. I did not concentrate on positive or negative. I concentrated on simple survival and finding a path that would not cave in under the load I was caring.  Later, I tried to be pragmatic while navigating between  Scylla of all kinds of false treatments and Charybdis of of neglectful attitudes. So no, I did not have any positive perspective.  The matter of fact I did not have any perspective.

If I had any moments of optimism they were put to the test hundred times a week, not by my child, but by those who were paid  to help him.  If the people WHOSE OBLIGATIONS, WHOSE PAID JOBS  are to prepare a child with disability for the future don’t help,  it is still the fault of the parent.  It is the parent who doesn’t know how to work with the teachers, administrators, or agencies.  It is the parent who needs a “calm” advocate, it is the parent who has to be trained how to talk to school.  Luckily, the schools, the state agencies, and non-profit organizations can make a list of better parents.  Parents  who are satisfied and ready to say so. Parents who can easily write about their positive experiences,

So, if you want to be heard, share your positive perspective and  swallow your bitterness mixed with a depressing hopelessness.

However,  the success stories with “positive perspective” don’t make me more cheerful. I am glad they happened somewhere, sometimes to someone, but they cannot be replicated, and that leaves the feeling of failure mixed with a  piercing loneliness and alienation.

It has to be told, that writing unhappy story  is much harder than reporting on successes.  You don’t share the fact that you go through bankruptcy proceeding the same way, you inform about your lottery jackpot.

We under-report the hurt, humiliation, and confusion as if they did not have a right to be witnessed. But they should be known so they could be addressed, maybe even helped.

That is why, I will start writing a very short but multiple stories about events that  frequently drained my optimism about my son’s future.  I will write about those thousand tiny things that kill an elephant before they drain the last ounce of optimism I still, surprisingly, have.

This post was difficult to write.  Mainly because of an emotional knot. It is my strongest conviction that my son was never accepted in our town.  Not when he was 3 years old, not when he was 14, and not now. I partially understood the perspective of the people who rejected him.  I did not approve it but I did understand. The way I wanted to change the attitudes of others was by helping Robert to learn,  I rushed with teaching, hoping that as Robert learns and grows, his acceptance by others would follow.

This was not the case. Robert knows more, understands more, but as long as he is not understood and not given credit for what he had already learned, his knowledge is a heavy, but useless, load.

1. I remember my last conversation with his preschool teacher in the early summer of  1995.  I wanted Robert to participate in the summer special needs preschool program before another placement was found out. The teacher dismissed, almost laughingly, such an outrageous request.  Yes, she tolerated Robert for three months, just after he had left Early Intervention Program. She did her best, she paid close  attention to Robert every single day.  She was always with him  until, that is,  a new student arrived to the classroom a month and a half later.  From that moment on, it was an aide who was assigned to Robert.  Except, Robert did not understand it.  Ignoring a new teacher aide he followed the teacher so relentlessly and obnoxiously that she must have felt suffocated. So, no, she did not want Robert in her summer program. Robert stayed at home.

2. A few years later, Robert was driven twice a week from his Private School to the Public School in Southboro to be included, for an hour, in a typical first grade classroom. Under gentle prompting from the classroom teacher (Mrs. Sparrow, I believe) the students kept admiring Robert’s ability to read, the skill which seemed incompatible with Robert’s extremely limited language. The students learned about diversity and Robert just felt happy.  During the IEP meeting with a representative from our town, I suggested to include Robert in a first grade classroom in our town, with the assistance of the teacher from the Private School. Just for an hour or two a week. That would test waters for possible return to the public school later.  That ideas was, yet again, dismissed.  Robert could be included in Southboro but not in his own town.

3. In 2006 I begged my town to accept Robert just for two hours a day in town’s school.  I felt, he could make it.  After all, he was going with me everywhere I went: to banks, stores, libraries, museums, movies.  Only once, during those four months when Robert stayed at home, there was an incident. In the BIG Y grocery store , I wanted to return an item, as too expensive, after the cashier had scanned it already.  Robert never minded returning an item from a shopping cart but he DID mind returning it from a cash register.   He screamed, he hit his ears, he grabbed the item from the cashier and placed it in the shopping bag.  The cashier calmly reassured me that it was OK, they they did understand Robert’s behavior and that the next time would be better. They reminded me that during previous visit he was always helpful and calm.

Why was my son accepted in a grocery store but not in the school? I couldn’t understand.  Although I cannot divulge what was said during four mediation sessions with school,  the fact, that  it took four months, four sessions of mediation, and a letter to a former commissionaire of education in my state (To which he responded with a strong empathy.) before Robert could join the self contained classroom in the town’s high school for TWO hours a day, speaks for itself.

4.Months before that happened I had gotten a phone call from the previous Special Education Director joyfully suggesting to enroll Robert in a Specific  Private School in Boston area. I almost choked.  The day before this call, all the local news stations and all the local newspapers reported on a case of a SEVERE abuse in that particular school.  There was no way, the special education director would not have that information.  She not only knew that, but she knew that I knew that as well. For the following three years, she was supportive of Robert.  Yet, I never forget that call.

There is so much more to write, about what was said, implied, done, or not done to demonstrate how unwelcome Robert was in his own town, but I have to take a deep breath now and not get entangled in that invisible but sticky web that was spun around Robert to separate him from other students in his class.

During six and a half years since my son returned to public school there were a few people who tolerated my son, but only three of them really wanted him there.  The first was Robert’s aide, Mrs. Scott.
The second one was the school district current (in 2012/2013)special ed director.(she retired in June of 2013)
I was the third.

Mrs. Scott enjoyed working with Robert. Every day (EVERY DAY!), she greeted him with a big smile.   Robert felt welcomed, felt safe, and in the right place. She worked with him diligently.  She accompanied him to lunchroom and made him a center of the group. She seemed happy working with him even during his challenging behaviors, which she was mostly able to defuse.

I wanted Robert in a public school so he could follow a group of his peers, listened to their conversations even if he couldn’t participate. I wanted him to understand high school lives  of his peers, even if he couldn’t share their experiences. I was teaching Robert anything that he could use in his class.

The Special Education Director wanted Robert at the public school to save the town money by avoiding outside placement. But she also wanted to prove that the district was capable of accepting and providing services for students with complex needs.
But proving that was tricky if not impossible.

Mrs. Scott, the  Special Education Director and I, we all, had the same goal.  We all wanted  to keep Robert in school district and having him learn there. We all believed  that with some modifications there were opportunities  for learning.

Unfortunately, the potential was not utilized.  I could pin point to reasons, to neglect, to passive resistance to change, to many other things, but they all point to one general conclusion.  Robert was unwelcome.

Mrs. Scott retired and moved out of state.

I experienced more and more difficulties communicating with the school staff. Upon almost every visit I saw neglect and a lack of will to teach Robert or to even accept him as worth teaching. I was not able to change anything. I was growing bitter and disillusioned. Finally, for the last six months of 2012/2013, I had to force myself to even call the school when there was a need for that. I asked my husband to do that for me. Any way, I failed my son.

The special ed director, although much maligned upon her leaving, did attempt to  make Robert’s program appropriate to him and acceptable to me. She did buy a lot of new curricula materials. She did hired educational consultants to help the teachers understand Robert’s learning needs. But, although considered powerful if not aggressive, she was not a match for passive resistance coming from all sides -teachers, specialists, administrators, and school committee members.
Although, I did blame her for keeping Robert in the program that clearly didn’t work for him, I have to also give her credit for trying to make that program workable. She didn’t have enough money. She did not get a support necessary for smooth installment of changes. She was not a teacher. She was not a therapist. She was not a school committee member. She was not a superintendent. Despite presenting image to the contrary, she has much less power over Robert’s program than one teacher’s aide, who also happened to be a secretary for a School Committee with an access to some of the committee members. Instead the direcotr of Special education made almost everybody her enemy, and became vilified, when she went on retirement. Anyway, she failed my son.
A year after her retiring,in his last year at public school, my son remained as unwanted as he was brfore she arrived.
And the worst part is, nobody really understands the degree to which he or she kept rejecting Robert. After all,nobody lacked him in a iron cage. He was kept away by this thin, silky thread spun around him day after day. Thread hard to see and impossible to escape.

Before I began writing about different math curricula I used  with my son, I have to make a full disclosure about my emotional state in regard to that topic. I feel a lot of anger and confusion.  This anger is the result of those experiences:

1. None of the math textbooks or workbooks I bought for my son was recommended  or even known to school.

2. None of the program my son attended proposed any math curriculum for him. I am grateful that the two schools accepted Saxon Math  which I had been using long before suggesting this program to school.

3.I learned about many math programs from parents’ e-mail lists or later from catalogs, which somehow found a way to my home.

4.The schools tend to use goals (too narrow and too few) written in the IEP  as a reason NOT TO WORK ON ANYTHING ELSE. For a student who has an access to the general education classes, that might be not as confining and disastrous as it is for a student whose whole education has been reduced to IEP goals.

5.Working only on specific math goals in a vacuum, without connecting them to related topics, leads to  many holes in understanding of  the concepts.  Consequently, we demand that children subjected to such approach jump from a stone to a stone while crossing a brook, instead of walking over the bridge made of well-connected and supported boards as their typical peers do with the help of a well designed, comprehensive curriculum.

6.Lack of curriculum forces teachers to search for appropriate pages on internet.  The pages from internet allow for extra practice but not for an introduction of  novel concepts.  Relying on such pages negatively affects teaching, as it leads to mechanical applying of formulas without understanding concepts behind them.  It is not good for the teacher and it is certainly not good for the student. 

7. I suspect, however, that this approach is wholeheartedly supported by the school administration as it saves money.  Instead of buying expensive textbooks and workbooks for students,  the administration relies on teachers to print pages from internet to address narrowly  formulated IEP’s goals. Those goals, I have to emphasize again, are too narrow to result in any meaningful learning. And thus the students who need more to learn, get much, much less than their typical peers.