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Recognizing Miracles

March 18, 2014

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
―     Albert Einstein

Tuesday has become our zoo day. The weather is finally starting to warm enough to have afternoon outings with Mary again. Since Tuesday is not a therapy day, we’ve been sneaking off to the zoo in between picking her up from school and picking up her brother and sister from school. It’s a quick trip- we squeeze in about an hour and a half of zoo time before we head across town to Troy and Joyce’s school, but since we have a membership, it’s no big deal to only see part of the zoo at a time.

So we went last week, and again this week. And if the weather holds, we’ll probably go every week. She’s starting to recognize the routine and was cheering in her own way as we entered the parking lot this week. I felt so grateful to have found an outing that she is finally really enjoying. When she was younger, we would go to the zoo regularly, but it didn’t look like she really cared about it one way or another. I am learning, however, that I should know better. Because even when she doesn’t appear to be paying attention, she is absorbing it all.

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Mary appearing to not notice the giant polar bear standing just inches from her peering at her through the glass.

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Mary sitting very close to a monkey last fall. Both appear to be ignoring each other.

She may not look like she is watching, but she is probably taking in more information about that encounter than you or I could ever hope to. This picture was from last week. Last week, she absorbed it all. Today, she celebrated it all, and it was a joy to see.  Usually she sits politely in her chair while we wait in line to get in. Today, she was pushing her chair up in the line, hurrying me along, and singing and screeching in her celebratory way. She just couldn’t wait to get into the zoo.

First up on our list today was the red panda. She danced back and forth with him. I wish I had snapped a picture for you, but I was just too caught up in the dance.  She was cheering and swaying as he dipped his head down against the glass over and over. He seemed to enjoy the pressure of the cool glass against his head in much the same way that Mary enjoys pressure on her own forehead. They were quite a pair and she was so happy to share in the dance with him.  And me, well I just felt blessed to even share the same space with the two of them.

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Just in case you don’t know what a red panda looks like- actually not a bear at all. “Panda” just means “bamboo-eater.” Your fun fact of the day. ;)

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This is Mary checking out the red panda last fall.

There were of course the old standards, the rhinoceros, lions, tigers, giraffes. These are all fun, of course, but she definitely has some favorites.

Like the flamingos…
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and of course, the elephants….

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But every time we come, her favorite spot is the aquarium. She loves her precious penguins. They seem to swim right up to her, and the squeals of laughter and delight that they bring are so welcome.  But as I’ve shown you before, she has a favorite tank. And I think it has much less to do with the fish inside of it, and much more to do with the way the afternoon sunlight hits the water as it flows into the tank creating the most incredible display of bubbles. She loves to dance with the water.

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A very excited smile caught with her actually looking at the camera!

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After dancing with the panda, and cheering for her bubbles, it had been such a fun day. We had counted elephants and discussed the monkeys playing in the trees. All of that was perfect. But just before we left for the day, something seemingly small happened.

We decided to stop and watch the sea lions before we left.

And that’s when it happened.

I pointed and she looked.

I know, it seems small. But I can’t tell you how many times I have pointed at something or told her to look at this, and nothing. I think the official term for it is “joint attention.” Well, it was never there. But twice, while watching the sea lions from above.

Twice. I pointed and she looked.

It is not enough to pray for miracles. We have to be willing to recognize them when we see them. And today, she looked.

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Lucky Number 7

March 14, 2014

A daughter is a gift of love. ~Author Unknown

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I’ve never known anyone with such a capacity for love as her. I’ve never met anyone with such a keen sense of justice at such a young age, such a sense of loyalty to her friends and to her brother and sister.

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She’s been so much in her seven years. She’s been the dutiful little sister, playing her role in whatever adventure her big brother has dreamed up for them. She’s been the patient big sister, waiting with me through countless doctor and therapy appointments so Mary could get the help she needed. She’s the caring and compassionate comforter, stroking her baby sister’s forehead when she was upset, or patiently trying to teach her how to play dolls.

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She is my dreamer. To her all fantasies are real. The princesses in Disney World were there just for her; the dolls in her closet all have feelings and need to take turns coming on outings with us, just so they don’t get lonely.

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She is the one who stole her father’s heart. Our little princess who needs only smile to get exactly what she wants from her doting Daddy. She has the most beautiful smile, and a gentle heart to go with it. She is firey and sprited, but dreamy and caring.

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Just last week, she asked me to cut her long locks of hair. She’s been having trouble brushing her hair, in large part because of her sensory issues. So she decided, on her own, she wanted to donate her beautiful golden mane to a child with cancer. You’ve probably heard that people with autism lack empathy? This has not been our experience- especially with this little princess.

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She is the one who keeps me grounded in the things that are really important- she’s the one I can always blame the dirty dishes on, as she gently and cheerfully pulls me away from the kitchen so we can play dolls or work on a puzzle together.

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And even though she just turned 7 this week, she will always be my baby girl.

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Happy Birthday Joyce.

The Ache of Not Knowing

March 2, 2014

“When we truly realize that we are all alone is when we need others the most.”
-Ronald Anthony

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Mary watching the water dance

We saw more doctors this week. Every three months we start making the rounds at the hospitals, but sometimes it winds up just being constant. It’s different and the same each time. New ideas each time, new worries, but no answers….

About a year ago we had our first hematology visit. We’ve been there and on the phone with them many times since then. Mary’s red blood cell counts are low and have been for quite a while. It appears to be a production issue- her body simply is not making enough red blood cells, and there really aren’t any good options to encourage her to make more outside of a bone marrow transplant, but her numbers aren’t quite low enough to justify that either. Since she is still undiagnosed, we still have no reason for why her counts are low, and so we have no idea if they will get worse, or if other types of blood cells will start to change as well…. So we watch… we monitor… we draw more blood… and we wait… we wait for impending doom, or an answer, a diagnosis, a path.

We saw neurology this week as well. I adore Mary’s neurologist. She has become very much a friend on this journey- someone who seems to genuinely understand that remaining undiagnosed is exhausting, lonely and tortuous. When the other doctors on our team seem to want to throw their hands up in defeat, she presses them to keep going, because not knowing is not acceptable. But she is also a great diagnostician. She sees what the others may miss- she looks for the zebras when others are looking for horses. Mary has been having these episodes of suddenly falling asleep, mid task again. She has also been having episodes of unexplained intense pain. Cycles of intense fatigue followed by cycles of intense thirst. The endocrinology team we started seeing last fall has already tested her for diabetes mellitus, common in mitochondrial patients. But there is another possibility- diabetes insipidus, where the kidneys- either due to a kidney problem or a neurological problem- fail to concentrate urine effectively, resulting in constant thirst and lots of wet diapers. This is something that has developed only over the last 6 months or so, and I am hopeful that somehow this is just behavioral- that perhaps Mary is only experimenting with a new sign of sorts- she bangs her fist on her chin, not proper ASL, of course, but it gets her what she wants. Because if it’s not behavioral, then it is another change, and more reason for more worry with no answers.  Her neurologist wants to find a way to re-sequence her exome. We had the full exome sequencing done last year, and the results were disappointing. We didn’t really discover anything new about our girl, except for this ZBTB20 gene, that simply doesn’t explain her symptoms. Mary’s doctor believes they may have missed something and that perhaps another lab with different technologies or different technicians may see something that the first lab missed. But the test is expensive and I’m not sure our insurance company is going to want to pay for it twice… She also thinks we should continue seeing her colleague in Cleveland, hoping that between the two of them they may think of something- something familiar about my sweet girl that may give us a road map.

Right now Mary is doing well. She is not nearly as sick as she was last year. Somehow – perhaps it’s been all the snowy days away from germ-filled schools- she has managed to stay relatively healthy this winter. There is no big test result waiting on the horizon for us. But there is still the constant parade of specialists, taking up more and more of her precious time. I have a list sitting here on my desk- 14 more specialists we have to set up appointments with.

Last year I remember sitting alone with Mary, in the hematologist’s office, adjacent to the inpatient pediatric oncology unit. I sat there and waited as he walked out of the room to look at Mary’s blood under a microscope, and a familiar knot, formed and twisted in my stomach as I waited. Because we don’t know, we can never assume. Because I knew that this kind doctor could walk back into that room at any moment and say something to me that would destroy my whole world. It’s like that every time we see a new specialist. And even on those visits that are seemingly routine, that knot is there, the memory of the fear never goes away and it comes back into full focus, every single time I sit in one of those tiny exam rooms with my girl. We watch Mickey Mouse on the ipad, and I try so hard to put everything I have into counting the Big Red Gooey Fish that Mickey is trying to catch in his boat with Pluto, while on the inside the knot tightens and the emptiness of not knowing grows.

I am tired. I am exhausted. There are so many symptoms to manage, so many unknowns to monitor, and all I really want to do is just be with my girl. All I really want to do is be a mom to my kids. But I can’t let it go. There are too many potential disasters on the horizon if every single system in her tiny body isn’t constantly monitored- or so they tell me, but even they don’t know…..

It is so strange to admit this out loud. I have multiple friends with children who are diagnosed with different devastating illnesses. Each day they have together is a hard-won blessing. And while I would never want any of these diagnoses for my own child, and I would do anything in my power to take away their pain, at the same time there is this strange twinge of jealousy- an ache for the community, the bond that comes with a word that defines a set a symptoms. And maybe this hurts even a little more to admit: as much as Mary has improved in her ability to make herself understood in very simple ways- tapping on her mouth to say she’s hungry or thirsty, for example, and as much as I have said so many times that it is okay with me if she never speaks, I still ache for that connection, for some reliable form of communication. When she cries, she can’t tell me that it hurts, or where, or that she’s scared or why… When she’s happy, I can guess at what she is rejoicing in, but she can’t share it with me out loud the way other children can. And while that silent celebration, or that quiet connection we get when she presses her head into mine is so beautiful, I still feel like I am not getting the whole story. Selfishly, I want the kind of back and forth relationship that I see so many of my friends sharing with their children. And somehow going through all of this, all of the unknowns, all of the fear, without really being able to communicate with her in the way that so many other parents can with their children… I just feel so lost, like I am guessing about so much, and then second-guessing myself. And then I feel guilty for even feeling that way, because in reality the connection that we share is so beautiful, it seems selfish to want anything different from what we have…

So many people have told me to go somewhere else- see a different doctor in a different hospital, maybe they will have some answers. But where do we go? You see, while we have seen more than 20 different specialists with Mary, there still is no place, no one doctor to check in with, even if it were to mean a trip across the country, or across the globe. There is no path laid out for us, no road map. We are so very alone here on this journey, with no guide, no map, not even a footpath blazed through the woods. And I just don’t know at what point do we get to stop searching. When do we just get to be a family? And when do we get to stop feeling so lost and alone here?

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Mary walking carefully on the frozen pond near our house, with Troy and Joyce racing across the ice ahead of her.

Fifteen Minutes

February 17, 2014

“If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.”
- Anne Bradstreet

While we haven’t always received very clear instructions about Mary’s condition or syndrome, one was quite clear: Do not let her get too cold or too hot. In fact, too cold would actually be more dangerous than too hot.. One of the many symptoms that Mary struggles with is an inability to properly control her own body temperature. She overheats quickly in the summer months, but has had some equally frightening episodes with getting too cold- even in the summer, like at the beach. So with the intense polar vortexy kind of winter we’ve had here this year, she just hasn’t had much of an opportunity to get outside. We’ve maintained a pretty solid snow-pack here this year too, and Mary loves the snow, so it has been tough keeping her inside much of the time. But today, it warmed slightly. We got into the upper 20′s, so relative terms here. ;) Since my husband was off from work today, we had two grown ups. We decided we would take her out just long enough for some quick sledding. We started to bundle her up…..

And she fell asleep, mid-bundling.

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Another one of her little symptoms is fatigue- she sleeps through much of the afternoons, and through many outings. So we put her up in her bed. Troy and Joyce went out sledding with Daddy, and even got me to sneak out for a few minutes while Mary napped.

But, when she did wake up several hours later, we tried again.

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Sledding with Daddy

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My little thrill seeker

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In order to get her back up the hill, we tow her lying down. She loves tasting the falling snow on her face as she gazes up at her beloved trees.

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We each got a couple of turns taking her down the hill. She had a blast.

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Once at the bottom of the hill, next to our creek, deeper into the forest, she reveled in the sensation of the snow on her face.

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After fifteen full minutes of intense fun, it was more than clear that it was time to get Mary inside and warm her up. I carried her inside and snuggled her next to the fire. But oh, those fifteen minutes of winter were priceless.

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Mary’s view from her spot at the bottom of the hill. All her favorite things- leaves, trees, snow, and water.

 

Monster Trucks….

February 16, 2014

I’ve been really busy. I haven’t had a lot of time to write here – and I don’t have a lot of time right now, so this will be quick.

We saw the Monster Jam monster truck show today. Yes, us. Yes, I know what you are thinking- sensory overload?  Um, yeah. BUT we did it. With smiles on all of our faces. The kids loved it. It’s amazing what those little noise-canceling ear muff things will do. And since Mary hated hers, of course, we just took the batteries out of her hearing aids- instant ear plugs.

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Then the show started. It was loud. It was rowdy. And it was fun.

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DSC02294(Don’t worry- no one was hurt. ;) )

So at one point towards the end of the show, I got up for a minute to throw away our empty cups.  When I came back to my seat, someone else was sitting in it….

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Yes, if you are a Monster Truck fan, you probably already know who that man is, sitting next to my little girl- Lee O’Donnell, the driver of the Iron Man truck (the red and gold truck pictured above, for those of us not so Monster Truck literate.)  Mary, who loved the show- I was actually pretty surprised with how intrigued she was by all of it- was totally cool with this guy hanging out with her. She even let him get a few pictures with her….

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Of course, he had to make room for another of her fans….

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Gary Porter, the driver of the Grave Digger Monster Truck. What can I say, Mary’s a popular girl. ;)

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So a busy day, but a fun day.  Gotta run.  It’s a lot of work to keep these kids entertained in the winter, but we’re managing. :)

The Freedom of Wheels

January 21, 2014

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.”
― Mother Teresa

It’s finally here. This was not an easy decision, but perhaps it wasn’t quite as hard as it could have been. You can click here for the story on that, on how we decided it was time to get Mary a wheelchair.

She is doing great in physical therapy. She can do ten minutes on a treadmill at 1.3 miles per hour. For her, that’s a sprint. For an adult, it’s a leisurely toddler pace. After ten minutes of focused walking with no distractions, my girl is cooked. That’s it. But it is awesome. It is so much more than she could do before, but we are still left pushing her around in an off the rack stroller for most outings. But she is four. She’s a big girl being trucked around In a baby’s stroller. And even though it is the biggest one we could find, she is outgrowing it. Her positioning in it is less than ideal. And she is pushed around with little opportunity for her to control where she is going.

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Well, today that changed. Today, we picked up her new chair. (And it’s green! Just like she wanted! -see the back story. ;) ) Once we wrangled the new chair into the minivan alongside her old stroller, we headed to the mall to take our new wheels for a spin.

We got pizza at the food court – she could wheel right up to the table, no sitting on my lap, no slumping off of an oversized chair or squeezing into an undersized high chair or slouching in a stroller. A big help for a girl who has a history of swallowing issues.

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Joyce and Troy enjoyed their pizza too!

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She goofed off in the family bathroom with her big brother while we waited for her big sister. (Mirrors are way too much fun)

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She got to see the mall in a whole new, far less enclosed way.

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And then, on her first outing with her new wheels, she decided she was done having her big brother be in charge of where she would be going. She took the wheels in the toy store. And that, my friends, is so much of the point. She needed a bigger stroller, yes. But this, this wheelchair, gave her that little edge of independence that she craved. And suddenly, all that worry about the stigma, all that worry about what it would mean to give her a wheelchair after spending so much time and energy trying to prevent the need for just that…. None of it seemed to matter anymore. Because my girl had that smile of determined independence. She won’t need it forever. But for right now, it is perfect for her. For right now it is just one more tool in our box that can give her a taste of that independence that we are working so hard to give her.

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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?

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