Sunday, April 1, 2007

Anonymity - Why Do Many Parents Want It?

Anonymity – Why do many parents want it?

written 3/20/06

Many of us are fortunate enough to choose anonymity when their child is mainstreamed. They can pull it off, if executed carefully and the parent is paranoid and OCD! These days, getting pulled out for services is common in classrooms. An appointed shadow may not be obvious as to what child they are helping. Some mainstreamed children may no longer need an aide. Their issues may not be negative behaviors that are obvious or affect others. Because of these unique factors, these children do not stand out, and the option of living label-free is a reality.

Some parents, like myself, choose to ‘hide’ the label from public knowledge.  This is because Leo and kids like them have experienced discrimination from parents, peers, teachers, and educational staff.  In my experience as a parent and a preschool teacher, it is my observation that ignorance and fear seem to be the main obstacles.  I have chosen this route for my son and two years later it’s still the best option for us.

Because his label is a secret, other parents haven’t kept Leo and his friends from having play dates. It's not the kids, but the typical parents being the obstacle. Educators haven’t treated Leo differently in the classroom.

When Leo acts up, he gets in trouble. He is accountable for his actions, judged as an individual on his own merit. Expectations for Leo are just as high as any other child in his 1st grade class. Expectations for Leo’s academics, conduct, and personal development, are based only on the choices of the other children, not their parents. He can play any sport he chooses. Leo occasionally has issues riding the bus like any kid.

The bar continues to be high for Leo because his teacher is in the dark about his history. That bar helped him succeed and fly through his programs when he was little. I hear how kind, sophisticated, funny, and social Leo is. I know these comments are real, not contrived or forced by parents thinking they must say something positive. Like any parent, we wanted to provide Leo with as many choices as possible.

Many high functioning kids blend in, or because there are other excuses that fit the bill for anything unusual. These excuses can be speech delays, low tone, and other innocuous issues that are deemed acceptable. The “diet” can be explained by your garden variety food allergies excuses.

In the typical world, most people including educators, know very little about ASD, other disabilities, and various learning styles. To most, Autism is a hopeless untreatable disability. Once the word Autism is associated with a child, the stereotype from the 70’s still prevails. THEY COULDN'T BE MORE WRONG. A one-size-fits-all description of a significant child stuck in their own world with nothing to offer? Equating Autism with no emotion, no connection, nothing meaningful. People don’t realize that this spectrum is a spectrum. And even those that ARE significant, their percentage is small.

And indeed, these significant children may ALSO be funny, affectionate, adorable, a big brother, a son, or a grandson. He may be smart, great at basketball, and loves animals. These kids are individuals, not just the label. Some may be a total handful, while others may be eager to please and very manageable. ALL children on the spectrum are equal and are individuals by their own right. They ALL have something to offer.

Parents can’t understand that ASD kids are just kids, and their friendship is of equal value to any typical child. Unfortunately, ignorance, fear, and discrimination causes parents to avoid ASD kids. They fear ASD kids will affect their kids in a negative way.

So why not just tell everyone and explain Autism to each and every parent and educator in hopes of setting them straight and winning them over?

First, we are outnumbered. 12 out of every 100 school aged kids has an IEP for a variety of reasons. Although this is high, majority rules! Our society and their ideals rule. I’ll tirelessly try to win over my mother-in-law, an old friend, and the few people that we chose to let in on purpose or by accident. As we all know, this is a very complex disorder. It can’t be explained in one phone call, one paragraph. It’s something that can only be understood over time. After all, this disability is about patterns! I can barely get through my laundry, the driving, and cooking, let alone find time to talk to parents and teachers for hours day after day. In a twisted way, I wished the numbers went the opposite way. It would make our lives much easier!

Second, Leo’s self esteem with living in public with a label may be affected. His self esteem may be affected by feeling overwhelmed and perplexed by his label. After all, it’s hard enough to feel confident and get through a challenging day as a 7 year old. He may be reminded too many times per day that he is different, and think there is something wrong with him. In my eyes, he is my perfect little boy, but his own self image won’t feel the same way.

Third, Leo’s social life may significantly narrow. He and some of his friends may no longer be able to have play dates. He may not be included in certain activities. His friends may see adults, the people they look to model after, treat Leo differently and do so because they have learned to.

Fourth, teachers and parents may lower their expectations for Leo. He may be able to get away with accomplishing very little work, not his best effort. When I get a chance, I’ll link a scientific study providing research supporting this outcome. It was published in a psychology journal and I saw it in the Wall Street Journal.

I am in the weird position of being a part of the typical world that us ASD moms usually don’t see. Typical parents do not know of my past, so they freely speak truthfully with bias in front of me. Teachers do this too! Honestly, I hear and see discrimination regularly. I am not kidding!

 Last week was a busy one, so here are 3 examples JUST from this one week!

1) I know two 3 year olds - one has ASD, and the other is typical. They are good friends – they hold hands in circle time, they seek each other out when they arrive at school. The moms have had a couple conversations in the parking lot, gushing about their budding friendship, and discussed getting them together soon. Recently, the mom of the typical child by chance saw a shadow and her child’s friend together. Until then, she didn’t think this child could possibly be “the one” with a shadow in class. She got curious and got her confirmation. The ASD mom wondered why she never got that call for a play date as excitedly discussed. Today, I saw the boys playing together like they always do. While playing, the typical child states out of the blue, “My mom said you can’t come to my house”. Because this parent knows about the label, these boys are kept apart.

2) While volunteering during the recess shift at school, I get to talking with one of the paras. She turned out to be a substitute para. I had seen her so much I didn’t know she wasn’t a regular. I had been thinking about becoming a para in the fall when my daughter started attending Leo’s school, so I began asking her about how she liked it, how the process worked. During the discussion, she mentioned she could turn down certain schools or certain jobs. I said that it sounded pretty flexible. She said she always turns down working with the special needs kids. In my academy award performance, I asked why she wouldn’t work with these kids. Again, she didn’t know I was a sp. Ed. Parent. She didn’t have a definitive answer, only that it made her uncomfortable.

3) Our school budget is in the process of getting approved by the town. At the PTA meeting on Thursday, I heard a parent mutter under her breath about how all of the special needs kids gobble up so much of our money.

The Choice Of Going Public With The Diagnosis
Many parents choose to share the diagnosis with other parents, the teachers, and friends. Many parents don’t have a choice since their child’s presentation may be obvious. Many parents just don’t want to live a double life. I can’t blame them! Just like each child with ASD is unique, each family has their own unique set of circumstances, preferences, and styles that makes the choice unique for each family. I know many families that are quite happy and are supported by their neighbors, family and friends. Some are touched very little by discrimination. I envy each and every family that lives each day along side other special ed parents.

Outside of putting Leo’s needs first, I much prefer to live in the special ed world. These parents are the best parents in the world. This disability have turned them inside-out, forcing them to be real, honest, and have their priorities straight. I miss that safe haven. In special ed, Leo is amongst his fellow parents and peers. His past is accepted. We are the same, understood. Special needs parents don’t realize how truly ignorant the typical world is. They don’t see it, they don’t hear it because typical parents know many of the special needs parents. And I am very happy about that!

I am proud to be associated with all ASD kids. Leo may have lost his diagnosis, but he still shares this disorder. True, Leo is stablized and has reached recovery status. There are no more programs to master. But, until there is a cure, he will still be wired differently. His immune system and GI system will still be compromised. Leo still must remain on the GFCF diet.

If we still had an open IEP, this is what my goals would look like:
1) Continue to monitor Leo's development. Keep current on therapy options and research.
Something may come down the pike that applies to us, or will apply to us in the future.
2) Protect Leo's anonymity by keeping my advocacy private and separate from Leo's life.
3) Manage Leo's immune and GI systems to keep him at optimal health.

Some families have had the opportunity to raise their ASD kids in close-knit neighborhoods. In some cases, I’ve watched the neighbors of these families suffer from ASD right along with the family. The beautiful part is watching these neighbors learn that our kids are kids first, and that ASD is nothing to back away from. These children are surrounded by their typical neighborhood kids, growing up right along with them. These typical children will have an excellent shot at becoming bias-free adults that treat all people equally.

Some families have large extended families that have rallied around our ASD kids, creating a positive, supportive, environment. This is something that any family, typical or not, desires. At least I do!