February | 2015 | Simple. I Just Do.

So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be. I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs. Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see. This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do. No clear pictures of faces, no names, no locations. There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more. Mostly about why I started this blog in the first place. It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face. This is apparently still a problem. People are given this life-altering information and no help. I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing. Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web. But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy. After all, I am his mom, and capable of making lots of decisions about his life. As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal. Thoughts?

I’m a latecomer to this. We were very lucky with The Boy’s elementary school, and his elementary teachers, in particular his ASD teachers who really acted like caseworkers, made sure everything ran as smoothly as possible. They advocated for the kids with other teachers and with administration, they handled little problems as they came up, they didn’t think the world was ending with every not-so-good day, and thank goodness they were the foundation, the bedrock if you will, of The Boy’s education.

They spoiled us, but they also showed us how it was supposed to be.

When we moved south, I was shocked at how bad a school could handle it’s special education students. So I fought to get a better placement for The Boy, because I knew it existed, and I knew we would lose him if we didn’t. And we got it.

Better, but not perfect. If you follow my blog regularly, you know that even now we have issues with certain teachers who just don’t get it, strange schedule changes that don’t make sense, and administrators all too quick to wash their hands of anything that comes up. In short, I still have to “deal with the school” from time to time, and the following are some of the best strategies I have found over the years for getting what you want from them.

1. Listen and watch to determine who your allies are. Before we moved here, I contacted the local autism society who put me in touch with the autism specialist for the county. She was supposed to be this fantastic resource, but I’ve watched her and listened to her, and to this day, I don’t consider her an ally. She almost prevented The Boy from switching schools, and I’ve seen how she has handled other situations with other parents, and I’m not impressed. On the other hand, through that placement process, I was impressed with the assistant superintendent for special education – she cut through the bull on the second day of our IEP meeting (with 14 members present), and brought some chart paper to illustrate that this really was a no-brainer, and the best placement was at his current school. If you watch and listen, you can determine who might be a good resource, and someone to turn to when something’s not right.

2. Never trust anyone 100%. Unfortunately, you always have to be wary, because in a school setting, people are not always at liberty to say what they really want to say, and sometimes, due to the nature of autism, they will bend the truth about something that happened (or didn’t happen), or not tell you at all. A friend recently had a conference with two teachers, one of whom was a revered special ed teacher. The friend and her son walked into the meeting, expecting to meet with cooperative teachers trying to find a solution, and the revered teacher began to yell at the son for disrespecting his mom at home. My friend was so taken aback, she asked her son to leave the room, and in her words, “if that was supposed to be support for me, it definitely didn’t feel like it!” People are people, and they make mistakes. They also change, and teachers get tired. It’s a tough lesson to learn, but just because you could depend on someone “on the inside” in the past, doesn’t mean that will always be the case.

3. Don’t belittle the teachers. I read on another autism blog’s Facebook page recently something about actual quotes from IEPs she’s been involved in, and it said something like “I am a taxpayer and I pay your salary!” Ummm, no. As a former teacher, this is just about the worst and most alienating thing you can say. Many times, teachers’ hands are so bound by mandates and the wishes of the district and administration that they have little to no power, even over what happens in their own classrooms. Saying things like this ensures that they will not be your allies, and that can turn out really badly, in the end.

4. Keep a poker face. It’s ok, and even advisable to play dumb from time to time. Earlier this year, The Boy got in trouble for making noises when entering his last class, which is supposed to be a social skills class with his autism teacher. She had decided it was going to be a silent class, and you can imagine how well that went over with The Boy, who understandably feels like he can let loose a little at the end of the day in his little autism community. And his teacher escalated the situation, making him more and more angry and upset. She emailed me with a long list of all the things he had done. Rather than retaliate, and explain to her about autism (as she clearly had forgotten all of her training for that hour), i suggested that The Boy may have needed to *insert any usual autistic reaction here*. I could have gone off on her, asking her what the hell she was thinking, and didn’t she know that kids on the spectrum stim and make noises, and to make a social skills class a silent period is the definition of stupidity, but I didn’t. I simply let her know that The Boy may have had a hard time with it. Don’t tell them how to do their jobs, even if you know better than they do. Play dumb, and remind them that your kid is a kid, and will make mistakes from time to time. Together we have to teach them what’s appropriate sometimes.

5. Pick your battles. Most autism parents are very familiar with this, but realizing school is not the be-all, end-all was a big a-ha moment for me. I don’t care so much about grades, because they are based on a standardized norm, and my kid is not standardized, and definitely not the norm. I care if he learns the content more, but again, our home life is more important than the Types of Energy and the Pharaohs of Egypt. I have given up on the science teacher this year, who rather than modify assignments, is choosing to give my child grades based on effort. I can’t teach him science, so I guess he just won’t get much out of the class this year. Disappointing, but not the end of the world. The teachers (even the autism teacher) are still giving us only a day’s notice about tests and quizzes, so when that happens, we do what we can but I don’t stress. He usually does pretty well, and what do tests show, anyway? Sometimes you bang your head on a brick wall until you realize it hurts, and then you move on.

Some of these tips seem contradictory, but they aren’t. They’ve all helped me navigate for better resources and understanding for The Boy, and I hope you can use them too. Do you have any tips of your own? Share them in the comments, please!

Shared on amamasstory.com – visit her Mama Moments Monday Link-up!