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Dream With Me

January 15, 2014

I’ve been thinking about something and I think you will like it. I’ve been dreaming quietly, and then recently, a little more out loud. And every time I mention this dream to someone, they get excited about it. It’s a pretty obvious idea. It is simple. Deceivingly simple. It will take a lot of hard work to get off the ground and I haven’t the foggiest idea where to start. So I’m coming here. Dream a little with me, won’t you?

Back in November I wrote a bit about Mary’s school. For those of you who might be new here, Mary, my youngest daughter is deaf and autistic. My older two children are also autistic, but not deaf, so they don’t get to go to Mary’s school. But they want to. And it’s not just because there is a train that runs around a track along the ceiling or the bowling alley under the second gym 😉 . It’s because of the sense of community that is there. It’s because of the built in, instinctual level of understanding and acceptance that is there.  It’s because there is a culture in that school built around self-advocacy and not only embracing differences, but building a community around those differences.  And it’s an idea that is sorely needed and still developing in the autism community:

Obviously, these are two very, very different communities, but there are similarities as well. There is opportunity for one to learn from the hard-fought lessons of the other. Because, at the end of the day, the parents, the advocates, the self-advocates, the autistic adults, and the autistic children who will soon be adults, all have the same basic goals, even if the interpretations are different. One of the huge successes of a school like the one Mary now attends is that the school is its own community, and involved in all the decision making and administration of the school are many deaf adults. The community that is working with these deaf children and young adults gains a great deal of input from deaf adults. They listen to, respect, hire, and put in executive and teaching positions people who understand from a first hand perspective what their students are going through. And that perspective is seen as vital. Just as the perspectives of autistic adults on all ends of the spectrum should be considered vital when a parent is trying their level-headed best to raise a happy, self-confident, fulfilled autistic child. Because if we could just step back a minute and listen to the folks who have already made this journey ahead of our children, they might have some powerful insights… They might be able to interpret…. And they might even be able to help us learn a whole new language.

Please click here to read the post in it’s entirety. This dream of mine might make a little more sense if you do. 🙂

So do you see it yet? Can you guess at the dream? Do you know why I need your help?

We searched and searched for a good school for Mary when she was aging out of Early Intervention. Nothing seemed like a perfect fit. The schools for autistic children sadly resembled nursing homes or institutions. The schools that worked on mainstreaming special needs children just didn’t make the necessary accommodations.  So many of the schools we looked at were focused on normalizing children instead of meeting them where they were and celebrating them for who they are.  But then we were lucky enough to find this incredible home at this incredible school that is just for deaf children. They do not specialize in autism, but boy do they get it. My sweet girl is celebrated by this amazing community. But my older children can’t go there. For now, they are doing well at their Catholic school. We have been extremely fortunate to find this small private school that does their very best with the limited resources to accommodate our children and to love them and celebrate them. And I am grateful. But these options are not available to everyone.

So here it is.  My not-so-crazy dream:

There needs to be a place. A school. A community. There needs to be a school community for autistic children and adults that celebrates them. A place that can have all the wonder and excitement that they deserve. A place where every possible accommodation is available. A place where their intelligence is seen and developed, no matter what their “functioning” level might have been labeled.  And most importantly,  a place where autistic adults can play a leadership role in developing the community, making curriculum decisions, teaching, designing.  All of it. Just like my daughter’s school for the deaf.  We need a place for our children where the people teaching them are teaching them from first hand experience.  THAT is the most important part. Autistic adults working side by side in leadership positions with neurotypical educators, preparing our children for a new kind of community that celebrates them, accommodates them, and teaches them how to succeed by developing the amazing talents and the amazing neurology that they already have.  And maybe it could include non-autistic siblings, so that an allistic community is also developed, and siblings aren’t necessarily separated as is often the case with special needs families. I mentioned this idea to one of Mary’s therapists yesterday. And she said it so clearly, I hope she doesn’t mind me paraphrasing it here: “I can teach her, but I can’t see what she sees. Only someone else with autism could see what she sees, and that would be a gift.”

I know it will need to start small. My small plan is to start a playgroup of sorts with my children and their friends, and then hopefully to invite some autistic adult mentors to come along on outing with us. Nothing formal. Just something so that my children can have adults in their lives who are autistic.

We, as NT parents raising autistic children desperately need the guidance of the folks who have already made this journey ahead of our children.  Autistic bloggers,  you are an amazing resource. But my children don’t read blogs yet. And they need your direct influence now. So they can clearly see that there is this amazing community waiting for them. And while I have lots of blogging friends who have managed to connect with autistic adults here and there, the daily influence of such an amazing community is a necessary gift that I so want to give to not only my own children, but to as many autistic children as possible.

Last night, I was talking with Joyce, my six year old daughter. She asked me if she knew anyone else with autism- besides her brother and sister. So I started naming children in her school and family friends who I knew to be on the spectrum. Then, I pulled up pictures of bloggers and their children- autistic children, and then autistic adults. A smile spread across her face. “So there’s actually quite a few people I fit in with…. Cool.”

Yeah, cool. And that little smile of self esteem; That knowing there is a community out there?  Well, that’s the whole point, isn’t it…

So help me out. Dream with me. I know a lot of people who will read this might have something to offer up. Even if it seems small. Some idea, some connection…. I live in a small town in Pennsylvania, and believe it or not, I know we have some seriously awesome resources here.  So, if you’re an educator, tell me how we get this ball rolling. If you’re autistic, tell me what this place should look like. If you’re a millionaire, offer to bankroll it for us. 😉 I’m still dreaming, but perhaps just a little louder now, because as my children get older I am feeling a sense of urgency about this.  I know this is possible. We need a place and we need some people. That’s what we need to start out. Let’s build a utopia for our children. Because if we can give this to them, just imagine what they can give back to the rest of us.  Who’s in?

4 Comments leave one →
  1. January 16, 2014 9:17 pm

    It would be great to find a school that does all of those things!! And all good ideas start with a dream. I wish you well on those endeavors. If I have any epiphanies on this subject, I will happily share them with you!!

    • January 16, 2014 9:44 pm

      Thanks Lisa! I wish it already existed. Do let me know if you get any ideas. 🙂

  2. February 2, 2014 9:23 pm

    Your blog is a true inspiration. As such, I have nominated you for a Liebster award. Go here: to see what you need to do next.

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