Starting Over Again..

(This blog post was written in the middle of February, but I'm only now getting a chance to post it. Make sure you read the edit at the end! :)) 

It was bound to happen eventually. A square peg just doesn't fit into a round hole. I've been trying for the past 4 years to make it fit and it's been an uphill battle. Who is the peg? Myself, my husband, my daughters, my son.

A group shot facing the sun. The first real spring day

If you look back through the archives of this blog you'll see that back when Ivy was a baby my intention was 100% unschooling. I bought books. I researched. I planned (to not plan) and I had so many hopes and dreams as a family.

What happened to those? I've been lying to myself, holding onto hope that the peg will fit. I'm not sure why, but I do know that I was afraid to rock the boat too much.We're already Eclectic Pagans, I had natural childbirths, I co-slept, I practiced child led weaning and extended breast feeding. I wore my babies in a sling and held them until they were asleep. I didn't do formula or jarred baby food. I don't go to church. I didn't have an epidural.

What do we do? We sing. We do arts and crafts. We cook and garden. We read books and go to the library. We go swimming at the YMCA and go to Spiralscouts. We go on nature walks and explore. We write poetry and make up stories. We make clay and sculptures. We grow herbs and dry them. We watch the science channel and the discovery channel, and even the history channel. We watch Spongebob too. Lots of Spongebob lately. We play computer games and research on Google. We blog.

Except those things all went to the back burner when school started. Now we try to squeeze in activities but there isn't much time. And im always anxious about making sure they have clean clothes and perfect hair before they leave. When they come home they are a mess of emotions. They're tired and don't want to do anything with me. Vacations are the only times that i can see them learning at home and loving it. They relax enough and that desire and passion returns.

We went puddle jumping and jelly fishing ;)

The turning point for me, was finding out that the school has been forcing Ivy to wear a pressure vest against her will at school for the entire day. This has been going on for months and I had no idea. I was appalled and shocked. They took something that was a positive tool that she loved and even asked for, and they forced her to wear it. They took her power away and created a battleground instead. No wonder why she didn't want to wear the vest at home! No wonder she was always jumpy and agitated. The slightest mention that she was a bit energetic and she would get so angry and defensive. And now, I know why.

I'm heartbroken that the school allowed their teachers and aides to do that to a child. Appalled that even after I told them, you may NEVER force my child to wear it if she doesn't want to, they called her to the OT and they tried to coerce her to wear it and promise them she would. She was told, "you have the choice, but you HAVE to make the RIGHT choice to wear the vest. There is only ONE choice that is

right."

I made the decision to pull her out of school and we are now legally homeschoolers. Though whole life learner, delight driven learning or unschooling is where we fit into the best. I'm not sure yet if I'm going to write about our learning on this blog or a new one or even if we can separate it because it's just how we are. Learning happens all the time, it's almost impossible to make it fit into a neat box and call it learning time. What I suspect is, my life will be more full and happy as we have more time to spend with each other. I can't count the number of times I've said,"maybe this weekend we'll have time" and I hear all the kids start to cry. And personally there are so many bonus's I can't even list them all. I have autism. I don't fit in with other parents and I've felt guilty and sad because Piper expects me to do what the other moms do. I'm filled with so much shame because I haven't yet volunteered in her classroom. I'm stopped with fear when I think about doing it. So much sadness and shame, guilt and tears. I don't want to force myself to do what I've been doing. I'm burning out from the social connections I've been forced to keep. Less energy I've had for the kids, lost because of another IEP or another email from the teacher. The daily notebook filled with negativity.

Ivy is so much happier at home

I will probably always regret not following my passion and keeping my kids close to me. They grow up so fast, hold on. Love them, learn with them, explore with them, grow with them, and trust that they will learn what they want to learn when they need to learn it. Trust.. So much is about trust..

  
*Edit: Its now the middle of March 2012 (St. Patrick's Day to be exact) and things are going very well for us. Ivy's mood is so much happier and I'm more relaxed. We are officially homeschoolers, and I plan to keep the rest of our clan out of school as well. This, is truly a new beginning for us all. We are finally pursuing our real dream. Our original goals. Our life. Hopefully I'll still find time to blog about it because I really want to share this journey with everyone. I am still a disabled mom (though I hate the term) and I struggle with my autism and anxiety daily. Our children all have unique special needs, and my husband still has his own adhd and bipolar issues. We are a family that is robust, loud, and chaotic.. but we're finding a happier rhythm since we've taken back part of our lives that school took away. The calm is visible even to outsiders. This change has been so positive for us and I'm looking forward to blogging more about it!

When Empathy and Advocacy Collide, Will You Speak Up?

Image via WikipediaI recently read the post, "Empathy and Advocacy: Closing the Gap" by blogger Lynne Soraya who writes the blog "Asperger's Diary" on the Psychology Today website. She contacted me on my twitter @AutisticMama and said that she was interested in my opinion as a parent.

Being autistic myself, and also being a mother to children on the Autism Spectrum I can say that I've been in both situations quite a few times and I don't think there is a right or a wrong answer. Like many other situations in life, the choice to stand up and speak out is individual.

It's really hard for me to be in public and see how common it is for people to react negatively to others, no matter what the issue is. I think perhaps because I'm actively not looking at them, I am picking up on everything else. I can feel and hear far more than most neurotypical people around me can. I don't see it though, I feel it. This type of emotional response is more common than I once thought, common among those of us with an Autism Spectrum Disorder anyway. Once thought to lack empathy, professionals are starting to realize that our emotional responses are often too much, not too little. And often times the emotions are being received at such a fast rate, that we become overwhelmed. Bombarded and assaulted by our senses. As always, research is ongoing as to why this occurs.

I usually know instantly when I'm around someone that is cognitively or neurologically different somehow. There is an unspoken language I think. I see those subtle signs of stress, or agitation. I can see that they aren't gazing at a flower, or walking by daydreaming. Instead I can see that they're counting the petals on the flower, and humming the theme song to a TV show over and over while running their index finger round and round on their thumb nail.

I see these things because I live with them daily in myself. (this is of course a doubled edged sword. It means I am capable of seeing when my autistic children are coming close to meltdown point, but sometimes my mommy-mode mind isn't listening. This is incredibly frustrating for me and I will tell you honestly that I do feel guilty every day for trying too hard to be a neurotypical mom when I'm not. It's a difficult line to ride.)

I can't tell you the number of times I've seen children flapping, spinning, or scripting to themselves and watched interactions with their parents and been shocked to learn later (in cases that they become acquaintances )that the parents don't see their children in distress at all. In fact, they complain of all the typical autism symptoms, but don't realize their child is autistic at all. Meltdowns are called temper tantrums, stimming is called "being a freak" or the child " being a weirdo." and other behaviors are receive responses like, "He is all boy!" and "she's just a sensitive girl that's shy and keeps to herself."

Now I'm all for not labeling everyone just for the heck of it, but I still cannot fathom in this day and age how people can't know their child is autistic. Then I remember...before autism was a part of our lives; I didn't know either. I just didn't know.

It's like not knowing anything about Parry-Romberg syndrome or Ribose-5-phosphate isomerase deficiency. Why don't I know anything about those disorders? Simple. Its because they haven't impacted my life yet. Is that a great way to live, running around completely ignorant that these disorders are affecting children? No. Its also not feasible that I learn about every disorder and disease out there. (at least not without obtaining a degree while doing so) Familiarizing myself with the "most common" diseases and syndromes is do-able. And Autism should be on that list for people I think. I think its do-able for every person out there. (Of course I also believe everyone should know how to perform CPR.)



It takes time though. Awareness doesn't happen overnight. To be honest, the arguing among professionals about the different types of autism and where and how they're going to change things is off-putting to people. No one wants to hear more about a subject that is so filled with emotion and anger. Its like shying away from discussing politics. Autism has become like that. A subject that seems to have only two sides, those that know nothing and those that think they know everything.

Finding common ground and coming together to help people become more aware needs to happen first within the autism community, before we can reach others. Its just surrounded by controversy and drama. How can I even begin to talk to people about it when many have their own opinions about it already.

"Just another crackpot diagnosis."
"Just another excuse for poor behavior and bad parents."
"Another ADHD"
"Yep sure, everyone has that nowadays."

Add in the vaccine debates and its just not friendly waters.

That being said, whether I speak up or not in a situation like the one above would depend on a number of factors. What exactly did they say? Was it loud enough for a lot of other people and/or the mother and child to hear? Was it very rude or very ignorant? How am I feeling that day? Have I met my social limit already? Am I already stimming like crazy myself and looking for the exit? Do I have my hands full with my own screaming kids? What do the people look like? Despite what they might have said, do they otherwise seem like they might accept me saying something to them, or do they look like they might scream at me for butting my nose in? Do I even have enough reserve left for me to really look at them and not just look around them? If I don't have enough reserve left to even look at them to assess the situation, then I won't attempt to say anything at all.

I try really hard to look at mothers in those situations and give them my "I know how hard it is, I understand" look. (which may come across as the creepy I'm watching you look.. I might need to practice more) If I have enough reserve to do all those things above, and find them to seem to be people that would be somewhat kind if I spoke up.. then I might say something like, "She seemed to me like she might be ____(insert something here) developmentally delayed, autistic, etc. Sometimes depending on initial reaction, I might then say that my daughter is autistic as well and that many children with autism flap their hands (for example)

Stopping to gauge their reaction is important because then I try very hard to know if they want or need more information, or if they think I'm a weirdo and they're secretly wishing I'd fall off a cliff. Sometimes I botch this part up. When I get nervous and think I'm doing something socially inappropriate (butting my nose in) I often do it more, or continually, because I get stuck in a loop and panic. Not very helpful.

I tend to use my own experiences rather than the child/parent in question. That way I feel like I'm not broadcasting their business everywhere. And of course, I also preface anything I say with words that make it very clear that I don't know 100% that the child is autistic. She could have a brain tumor, or some other neurological disorder. I don't know.

However I do know that being rude isn't helpful to the mother or the child, and if I can make them think about the situation in a different light, then awareness has been achieved. Because in the end its not just about autism awareness. Its about acceptance, compassion and empathy for fellow humans. No matter what the diagnosis of the child might be, its secondary to the lesson in being kind and non judgmental towards other human beings.

Related articles

• Empathy and Advocacy: Closing the Gap (psychologytoday.com)