There’s Really Nothing

7 Mar

I get asked this question a lot on facebook, twitter and in person is this: How do I tell someone I think their child might be autistic or showing signs of autism?

It’s almost always asked by someone who has the child’s best interests at heart and is genuinely concerned. They want to know if there is anything they can do.

My answer is typically this, “nothing.” Yep, that’s it. If you suspect a child of being autistic, there is really nothing you can do to help. You can maybe suggest they have him or her tested, but don’t expect a glowing  response. And don’t be offended if the parent in question ceases all contact with you.

People are complicated and they need to come to the realization that something else is going on, if indeed it is. I met a mom not long ago who was sure her son had autism at age 2 but he didn’t. Her basis, he lined up his food on his plate every once in a while and family pointed it out. Extensive testing and therapy later, he just had a weird habit. It was a short phase.

Parents are the best judges of things being “off” or not of their kids because they see their kids at their best and their worst. Most other adults who don’t see a child on a regular basis, so while your instincts may be right on, there is always the possibility they are off too. And they are ultimately responsible for the child in question and if there is something going on and they are in denial, it is sometimes easier to hear it from someone who does not have an emotional attachment, like a teacher or doctor.

I know how difficult it can be to feel like you’re “doing nothing” but aside from sharing your concerns, is there more you really can do?

Again it’s not just a word…

7 Mar

it belittles people. It makes them not just “other” but “less.” And it is not acceptable to use as a slur. Don’t tolerate it.

Words Have Meaning…And Meaning Matters

6 Mar

Today is the National Day to Spread the Word to End the Word. If you haven’t already pledged, I am asking you to do so now.

Here’s the deal, I’m a writer, I make a life off my words so to tell me “they are just words, they have no meaning,” well I’m gonna call bullshit on that. Wait, did I just curse? But, it’s just a word right? Don’t be so uptight about it.

What people are asking here is not use the word “retard” or “retarded” as an insult or in a joking way when someone does something less than spectacular. What people are NOT doing is ask that the world “retarded” be removed in the case of diagnosis of someone with an intellectual disability. George Takei, whom I love, put up his own PSA about not being overly sensitive to things like the word “niggardly” or “homogenous,” and while he makes a good point, he is missing the point of today. No one in the movement Spread the Word to End the Word is saying we need to abolish it from language. It has meaning in the appropriate context that is good. But it is far more often than not NOT used in the correct context. And that, my friends, is what we are rallying against.

If words did not have meaning, if words could not hurt us, if we could not “use our words” then what point would there be to speaking, writing or reading? The Princess would be way AHEAD of the game, if words did not matter.

There is no reason to call someone a “retard” or “retarded” in an insulting way. If you can’t find a better word to use, time to invest in a dictionary and a thesaurus.

The Unspoken Prejudice

4 Mar

This weekend I found out about an open house for a new autism private school in our area which was great until I read that it is only for children with High Functioning Autism (HFA) and Aspergers.

This is the second such school established in our relatively small area for kids with HFA/Aspergers. All of the programs for after-school and day camp in our area are only for HFA/Aspergers. We had an unfortunate incident last year where we enrolled the princess in a day camp program for the entire summer only to have them tell us after the first week they were not equipt to deal with her level of need. They were our only option. One week. We can’t  help your kid. We’re trained to work with kids with autism.

The unspoken prejudice that exists in the majority of special education and programs designed for children/adults with autism is that they exclusively cater to one targeted area of the autism spectrum: HFA/Aspergers. We have been down this road in the school system and with services.  They just do not exist in the numbers they need to for children like mine: who have large sensory needs, who need help with life-skills, who cannot speak or communicate their needs, who need extra help with almost everything.

It becomes frustrating to realize that with all the funding, all the research and all the “new programs” that your child is now being shut out not only from the NT world, but is now marginalized in the world of autism. It is the same kind of pain one goes through knowing their child will not make the typical milestones, but more profound because it feels as though in a world where your child should be accepted and understood people are consciously turning their backs.

When my husband was in school to become a teacher, there were several men and women going for special education and almost all expressed an interest in autism but he felt their impression of autism was unfairly skewed. “They think they will be dealing with savants or with geniuses who are just misunderstood in society,” I remember him saying. “No one wants to to be the one changing diapers or wiping drool.”

In our experience as parents, we’ve very much found that to be the truth. People who claim to have worked extensively with children with autism recoil at our daughter’s interest in smelling people and her shrieks. And I realize, we’re not all called to be Mother Teresa and embracing the least among us, but those going into special education need to check themselves seriously and realize it’s not all dyslexics or kids with just a few social quirks.

Our society needs a reality check too. Not only are the numbers going up for autism, the numbers of individuals who are profoundly autistic are going up. The number of kids who have autism AND ____________ is going up (for example, Autism and sensory processing disorder, global delays, schizophrenia, depression, epilepsy etc). We cannot continue to exclusively cater to one area of the spectrum.

One of my dreams is to open a school for children who would be served less than 50% of the school day mainstreamed. The goal would be to allow them to re-enter the school system when they get to a point where 50% or greater of the school day would be spent with typically developing peers. But, of course, some children might never reach that point, and that’s okay too. Right now in our area, if your child is considering low-functioning, the only options are home schooling or public school. For any variety of reasons home schooling is not an option for many families, so if the public school realm doesn’t work out, they are at a significant disadvantage. And for working parents, it is extremely difficult to find adequate child care for those who are low functioning. And with budget cuts, getting a worker for a child is next to impossible (we’ve never had a worker for “the princess” because of the lack of state funding for the program).

Unfortunately, this unspoken prejudice, this preference for working with high functioning children will never improve until it is openly acknowledged and since people don’t like talking about inconvenient and uncomfortable truths, it will be quite some time coming.

What does this sad news mean?

14 Feb

In case you have not heard, paralympian and Olympian Oscar Pistorius has been arrested and charged with murder in the shooting death of his girlfriend.  Initial reports state Pistorius thought she was an intruder and shot her in error. The police, however,  have been reported as saying that is not true. He will not appear in court until tomorrow.

Surely this is tragic not only for Pistorius, his late girlfriend, their families and friends, fellow paralympians and runners, but for us, the families of special needs children as well. Although Pistorius’ disability was solely physical and not at all intellectual or neurological, his victories became victories for all of us. It showed us the human spirit in all its greatness. It showed us that limitations are only limits on one’s imagination. He fought long and hard for the right to be able to compete with and against able-bodied athletes, a fight many of us face for our children with autism.

The truth is that this tragedy would not be reported with such fervor if Pistorius was able-bodied or if he were any other paralympian. And some wonder, will all the good he did for the disabilities community be not only forgotten but potentially undone?

Because Pistorius’ disability is solely physical, I doubt many of the in-roads he made will be undone anytime soon. Although, it would be short-sighted of me to not to acknowledge that some extremely ignorant people may attempt to link this violence to incidences like the tragedy in Newtown where some of the less enlightened stated that it was Adam Lanza’s autism that provoked his violence. Pistorius’ good might be forgotten, but I am doubtful it could be undone.

The most important thing to remember when tragedies like this occur; when heroes fall and fall hard; is that the message must be stronger than the messenger. We are all human and all susceptible to failure and falls from grace. Oscar Pistorius proved that paralympians could compete with their able-bodied counterparts. He proved that accommodations do not equate to an unfair advantage or cheating. Those are his messages, and may they live long no matter what the outcome of this horrific incident.

You just never know what’s around the corner…

6 Feb

Toward the middle of January The Princess’s teacher contacted me with a concern. The Princess had some new behaviors including taking food from other children in her class at meal times and not staying in her area during individual work. We agreed to meet and brainstorm some ideas.

By the time we were able to meet, they had largely solved the issues. The teacher was sitting with her one on one during meals working with signing and the GoTalk device and The Princess was doing much better. But we took the opportunity to discuss some upcoming things and discuss where we would like to see The Princess go.

Each year in the IEP process, of course one of the questions we are asked is our vision for The Princess. I have always included I would love for her to be mainstreamed and potty-trained. But recently something unexpected popped into my head. I want to be able to travel the world with The Princess. And I want us to visit art museums. The Princess has a Mona Lisa smile and I would like to first be able to take her to the local art museum then the one I grew up with in the state capital working our way to the Met, MOMA, the Guggenheim in Bilbao and of course to the Louvre. Of course, that means no touching and The Princess is a very tactile child. And we need to work on managing our impulsivity.

I told her teacher who thought this was an awesome goal. We discussed various ways we could begin working toward this even now. And we discussed The Princess beginning to eat in the cafeteria. It would help her work on various sensory inputs (primarily auditory) and get her used to more “crowded” situations. As well as give her more time to interact with classmates. Ultimately we decided to try breakfast first. One of  The Princess’s teacher assistants goes and gets breakfast for the class each day. The Princess started this week accompanying her and sitting down with her food. Monday and Tuesday, zero interest in eating or sitting for long. But today, she ate a chicken biscuit and fruit AND she drank her milk from the carton which she has never done before either in the classroom or anywhere else.

It was last Thursday that we met and already we’ve had our first success. Now, I fully anticipated the rest of the year The Princess refusing her breakfast and making slow, steady progress. So for this, out of the blue, I am so thrilled. I know she may only do it occasionally, but her teacher expressed to me that  The Princess’s brain is super-receptive right now and so we are totally pouncing on it with what we can. And we have no idea how it will pan out, but so far, it has been!

Risk Analysis

6 Feb

Monday, while waiting to begin The Princess’s classroom performance, one of the children had a health incident. This particular child’s parents were not present and it necessitated visits to the classroom by the school nurse and multiple attempts to reach them.

This child happens to have other health concerns in addition to autism and I have witnessed incidents that happened in the past including one where the child’s mother was present. Others happened when the mother was not in attendance, for example on field trips.

Having a child with medical complications put us autism parents in a bit of a bind. We want our children to experience as much of life as possible including field trips and autism festivals and fairs, but if we find ourselves with a child who suddenly needs medical attention, will it be as readily available as it would in a more controlled environment. The Princess’s class, for example, takes field trips for special Olympics, including one this week to a pool for swimming lessons. Does the risk of a child having a health related issue at a place like a pool mean the parents should automatically defer? Or risk something happening. In a situation where other children will also be present in the uncontrolled environment. There are no easy answers.

Monday, one of the teacher assistants was leaving the classroom as we approached with Princess and the other student who had the health incident. The incident occurred in the hallway on the way back to the classroom. Another parent was present on her way to the class and after offering what help she could, got the school nurse and then went to the classroom to alert the teacher who immediately raced to the scene. The Princess wanted to go  back into the classroom with me, so I obliged when I had met them in the hallway. I am glad that I did not only for The Princess and the other child but for the assistant as well who would have been stuck in the hallway with both children if I had not taken The Princess. There were no indicators present when the incident occurred that would have indicated to the teacher or the assistants that maybe this child should have/could have stayed in the room and another student be sent. This was a routine thing that happens often throughout the day.

I am grateful The Princess does not have digestive issues, seizures or anything else health associated accompanying her autism. And I cannot imagine the dilemma faced by parents in those situations. Because unavoidable things like what occurred Monday could easily happen and it’s no one’s fault. And there is no prescribed formula for risk analysis in these situations. I know, or think I know, what I might do in some of these situations, but it’s not me and not my child. So here’s a huge virtual hug to all those out there in the autism world with kids who have health issues that put their parents in these type of situations where having the experience and risking an incident feel like a no-win.