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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?

An Invitation

January 14, 2014

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.”
― Marcel Proust

She has a way of calming herself. She has done it for at least a year now. She holds her wrist up to her lips, and makes a gentle sucking sound while she brushes her lips gently back and forth over the back of her wrist. After watching her do this many times, I can see it has become a sacred ritual for her. When she does this, she can pull back into her own space, even amidst the chaos. Every once in a while she will look up at me, over the wire rim of her glasses, while she gently moves her lips along her wrist. It is a connection like no other. But this is her ritual. I can watch, and for that I feel privileged.

But then, two nights ago at bedtime, I was watching her go through her sacred ritual. But something changed. She looked down at me, as she was sitting and I lying in her bed. She looked down at me and offered me her wrist. She gently placed it under my lips and waited, watching me. So I made the same gentle kissing sound that she makes, and she gently rubbed her wrist back and forth under my lips. I was breathless. She took her arm back and went back to doing it herself. And then, as I watched, awestruck, she offered me her wrist again. We went back and forth like this three more times.

My eyes were filled with tears.

I can’t think of a higher honor than to be invited into such a sacred moment. Days later I am still smiling at the memory of it, feeling completely and totally blessed.

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A Change in Name

January 11, 2014

“What’s in a name? that which we call a rose
By any other name would smell as sweet.”  
―    William Shakespeare, Romeo and Juliet 

I’ve been blogging here in this quiet space for a little while now. I am enormously grateful for the friends I have made here along the way. But I’ve been feeling for a while now that it is time for a change. A very small change, really.

When I first started here, I was very new to the autism community. I honestly had no idea how charged certain words could be. I am still learning. When I first started this blog, I was fresh off my third autism diagnosis in two years. I felt like I had been dropped into a foreign land on my own. I looked at symbols like puzzle pieces and blue lights as outstretched hands, as a general symbol of support. It looked so much to me like I had written here in my post Community,

In the early days of Christianity, believers wore a small symbol of a fish, as a sign to recognize each other. During the days of the Underground Railroad, houses that were sympathetic to the cause and willing to offer shelter to those on the journey would light a candle in their window.

That’s what the blue lights mean. That’s what the puzzle pieces are. It’s a sign that says to those of us on the journey, “I get it.” “Me too.” “You are welcome here.”

And I really believed that. I never felt that the puzzle piece was meant to represent an individual. And I thought three puzzle pieces, one for each of my children (because I grew up as one of three siblings, and everyone gets their own of whatever there is- sharing one between three of us? No, that didn’t work out too well. ;) ).   To me, it sounded nice. It sounded welcoming.

But as I have come to know more people in this community, I have slowly discovered that the seemingly innocuous puzzle piece is a hot-button topic. And certainly, I want this space to be one that is welcoming to everyone. So, while I’m leaving the website address as it is (mainly because I’m not tech-savvy enough to change that and still have the grandparents be able to find us here), the name you will see at the top of the page has changed to the one thing that so enchants my littlest girl. To the thing that she has taught us to slow down and see, really see. The title has changed, but the rest is still us. So you will still find our little family right here in this same place, discovering new miracles every day. Thank you for joining us on this journey. 

The Storms

January 9, 2014

“It’s not a bad lesson to learn in the bleaker months: how you view a storm is a question of perspective; provided you find the right rock to watch it from, it could be the most incredible thing you’ll ever witness.”
― Dan Stevens

Tonight was hard. Tonight was the kind of night that a few years ago would have sent me to bed sobbing into my pillow. It was the kind of night that a less experienced me would have feared. It was the kind of night that I have now experienced countless times. It was the same. But so very different.

If you’ve been here for a while you may have noticed that my older children have been largely absent from this space. There is a purpose to that. As they have gotten older, I have not felt entirely comfortable sharing all of their stories here, because they simply are not mine to share. But at the same time, as they have gotten older, my parenting strategy has had to shift enormously, particularly over the last few months.

Troy is 9 and a half years old. He successfully discharged from all of his behavioral therapies last June. He has gained so many skills. But suddenly, over the last few months, his anxieties have flared up again. He is impulsive again. His temper flares and his moods change on a dime. He can be giggling and sobbing in the same instant. I feel like we’re back at the beginning in so many ways. Except this time, I can’t call all the shots. I want so much to give him his own voice in deciding his own accommodations. If I call for the cavalry, for the return of the therapists to teach him the coping skills that he needs, I want him to be part of that call. And he’s not ready yet.

But tonight was hard.

Tonight Joyce, misreading his social cues, thought it would be funny to throw a cup of water at him. She thought they were having a sort of pillow fight…. She thought they were playing…. The cold water against his skin was just too much. He lost control. He went into a full blown meltdown. Mary was sleeping. I gave him calm instructions. I tried, the best I knew how. It kept looking like he was regaining control, but then he would lose it again. More than 45 minutes after it started, I was standing in the bathroom with him while he pushed me and punched me with all he had, just trying to get it out. Screaming because the rage just wouldn’t let go. My heart broke for him. He had nothing. The deep breaths, the rubbing of his hands on his legs, the primal screams. Nothing was working. I wanted to cry with him.

So many people see him, and they don’t see how much he struggles every day. They will even say to me how he “just doesn’t look autistic anymore.” Like that’s something I should be thankful for or proud of. In many ways, I think it makes things harder for him. I think it makes us forget how hard he works to navigate our world. And without his faithful aide by his side, he has no interpreter, so while he may look more typical, he is working that much harder. And it comes out eventually.

Like it did tonight.

Like it has so many other nights.

But tonight was different.

Suddenly through his exhausted sobs, he heard Mary cry. His screams and bangs had woken her up,and she was screaming. I calmly told him I was going to have to go to her. I told him she was scared, that she had woken up to angry voices and screaming. That she needed me. And I could see it in him. With everything he had he tried. God, he tried so hard. He tried to pull himself together. He followed me out of the bathroom and into Mary’s room. His little body was shaking. She was screaming. She, herself, was now in a full meltdown. Her body thrashing against me and the bed. Screaming and banging her head. She grabbed onto my arms only to push me away and then pull me down again towards her as she kicked again.

And then it happened.

Troy, still barely in control of himself, crawled into the bed next to his sister. And he held her hand quietly. And he let her go through it. Every few minutes he would get up to scream himself. To punch the bean bag chair. Mary continued to scream, and Troy continued to attempt to collect himself enough to hold her hand for a few minutes at a time. And sitting in the bed next to Mary, all I could do was be there. And watch. In awe. Because a full forty-five minutes later, exhausted, they both managed to find their calm. Together.

I have three autistic children. To a new parent, or someone without any children of their own, that might sound daunting. But if you can shift your point of view, if you can watch the storm through a different lens, it is easy to see what a gift it is to each of them to have autistic siblings. They have the gift of always having other autistics in their lives who get it. They understand each other so much more than a neurotypical could hope to. They intuitively understand how ride out the storm together. How to just be there, without all the extra words getting into the way. And even when it’s hard, there is great beauty in that.

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What it’s Not….

November 23, 2013

“There is nothing like looking, if you want to find something. You certainly usually find something, if you look, but it is not always quite the something you were after.”
― J.R.R. Tolkien, The Hobbit

For three and a half of Mary’s four years, her doctors have been talking about mitochondrial disease. During that same time, there have been many other equally, if not more frightening potential diagnoses tossed about. Essentially every three to six months we have a round of appointments with various specialists, and each time they gently explain to us about another way that we will lose her. We have spent much of her life bracing ourselves for her death. Although I have talked about it here in this space, I don’t think I ever realized just how constant and how convincing that shroud of dark uncertainty had been around us. Think of watching a psychological thriller movie and at the end of it, you suddenly realize, only because you allowed yourself to relax a little, that your wrist is aching and your palms are marked by your clenched fingers.

Our team at our local hospital has been amazing. We have some of top doctors in the world working with us. But they are coming up empty handed. And each time a test comes back negative and another symptom pops up, the mutterings about mitochondrial disease begin anew. On paper, if you were to list out Mary’s symptoms, it lines up. But we happen to have an amazing mitochondrial doctor on Mary’s team. And she has said numerous times that she just doesn’t “feel” like Mary has mitochondrial disease. Certainly reassuring, but she can’t point to anything directly ruling it out. And these doctors have been wrong before. And while the doctors have been going back and forth, Mary has been making gains in some areas, but slipping dramatically in others. She is four. I have always said we would stop this hunt once she was old enough to understand what was being discussed. I realized today, we have reached that point.

Today we saw a new doctor in a new hospital in another state. We left Troy and Joyce at home with Daddy and cashed in some hotel points. Mary and I drove out to Cleveland yesterday afternoon. We checked into our hotel and enjoyed a girls’ night out. It was fun. It was needed. This morning, after a restless night’s sleep, we walked over to the Cleveland Clinic, a world-renowned center with some of the best doctors in the world. It was enormous, the campus sprawling over many city blocks….

Our appointment was for a full hour and a half consultation. The doctor we saw had already discussed Mary several times with our mito doctor here. He was prepared for the meeting. He knew what he was looking for. After discussing her development and her regressions, he confirmed what I had long suspected, that when she contracted the chicken pox from the vaccine at the age of 16 months, it likely amplified whatever set in motion whatever led to the series of regressions she experienced. That said, the vaccine itself is not what caused whatever it is she has. But still, it would explain some of what we experienced a few weeks ago after she received the booster doses of the same vaccines – the extreme fatigue, the distractedness, the paleness and lethargy. For now, we will continue to vaccinate because in this case the symptoms appear to be caused more by exposure to the virus than by the vaccination itself, and obviously exposure to the actual virus (as is more likely these days….) would be far more dangerous to her.

After evaluating her sleep issues, pica, swallowing issues and other symptoms, we talked about mitochondrial disease. This doctor, who specializes in mito, who we sought out as another mito specialist, this doctor who likely knows as much,if not more about mitochondrial disease as any other mito specialist in the world, agrees with our mito doc. Mary does not have classic mitochondrial disease. And this is not just a gut feeling. He pointed out the structural abnormalities, the facial features, the hip dysplasia, and the obvious fact that she is doing relatively well right now. I could suddenly feel the air flow back into the room. I suddenly realized just how certain I had been that he would confirm that this sounded like mito. Instead the conversation turned to other possibilities.

He felt like Mary looks like a chid with an Angelman-like syndrome. Angelman’s syndrome has been ruled out, but apparently there are other versions of this genetic syndrome. Another possibility that he brought up was something called glycosylation disease. Glycosylation, as I understand it – which is not much at this point, has to do with how all of the proteins in the body are folded. It would explain shy so many systems are involved. And from my very limited reading on the subject, it has a tendency to stabilize, meaning that if you have survived it as long as Mary has, then it’s more a matter of symptom management. The catch here is in talking via email with her mito doc here tonight, again, she has already been tested for CDGs(congenital disease of glycosylation). However there are many, many variations of this disease and some labs offer more extensive testing than others.

After having already explained to this new doctor that Mary could very likely understand everything we were saying, I was relatively blunt in my questions – well, in code anyway. I told him that we had been told many times that she had diseases like ataxia telangiectasia (which he knew meant a vey limited lifespan). I asked him, “should we be planning for college?” For a second he looked puzzled as he deciphered my carefully coded question. Then, a sympathetic look came over his face as he said, “oh yes. Yes. Absolutely you should be planning for college.”

Our long drive home this afternoon felt more like a long exhale. Suddenly, all the tension from over three years of testing was lifted, if only for a moment… College….. Maybe Harvard… Or Carnegie Mellon…. Or a local school with lots of trees…. I guess we better start saving up. ;)

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Difference

November 20, 2013

Please note: The following is written from my very limited perspective as a neurotypical, hearing mother of three autistic children, with the youngest being the only one who is deaf. I have no first-hand experience as either deaf or autistic. My experiences with both deaf and autistic culture have only spanned a little over four years. The following is based solely upon my own observations. I am painfully aware that, like many parents, my perceptions may be incorrect. I would be tremendously grateful for any corrections or insights you should like to leave in the comments section.

“Once upon a time there were two countries, at war with each other. In order to make peace after many years of conflict, they decided to build a bridge across the ocean.

But because they never learned each other’s language properly, they could never agree on the details, so the two halves of the bridge they started to build never met.

To this day the bridge extends far into the ocean from both sides, and simply ends half way, miles in the wrong direction from the meeting point.

And the two countries are still at war.”
― Vera Nazarian, The Perpetual Calendar of Inspiration

I picked Mary up from school yesterday. It was a perfect, cool crisp fall afternoon, and there were plenty of staff, students and parents walking through the campus on their way to buses, cars and meetings. It was busy. But it was quiet. Students and staff happily signed to each other. As the cool wind rustled the dancing leaves, all I could think was that this is a sacred place. It is not just a beautiful campus, but a place where community is fostered. A community based on not only accepting disability, but focused on using this different ability as the basis of a supportive vibrant and beautiful culture. There is nothing here that revolves around “fixing” or “changing” or forcing the students to become more typical. Here, everyone, hearing and deaf is encouraged to learn the language that the students are already using. My high school world history teacher used to say, over and over, “Language is culture. You take away a country’s language and you take away its culture.” But in watching the students here, I can’t help but think the opposite is also true. If you can share a common language you can develop a culture. And I thought back to the statement that one of Mary’s teachers made to me last year when she explained that some people use the words “speech” and “language” interchangeably, when they clearly do not mean the same thing. My daughter has language, even though she does not have speech. They are not the same. And the beauty of this sacred space is that they get it. And instead of forcing her to do the thing that she cannot, they take the extra effort to meet her on her level, to learn her language instead of forcing their own upon her. And it is beautiful to watch the satisfaction on her face when she knows that she is being understood and that she is being recognized – even if she is not communicating in the traditional ways.

When I watch events unfold in the autism world like what has happened last week, I can’t help but see the parallels to the deaf world. Right down to the language. Many deaf adults will tell you that they prefer to be called “deaf” rather than “hearing impaired” as the former is descriptive of not only their level of hearing but of how they identify culturally, while the latter only points out something that is missing. Similarly, many autistic adults would prefer the label “autistic” versus “person with autism.” Semantics to an outsider perhaps, but a point of heated contention to those inside the community. It is amazing the ability that we have to divide ourselves when, in theory, we should all be working towards the same goals – support, independence and respect for our autistic friends and family.

But I see it again in deaf culture. In our city there are actually two schools for deaf children. One focuses on turning their deaf students into “hearing speaking miracles” who do not use American Sign Language, and do not require an interpreter when they ultimately mainstream into their local neighborhood schools. I know many parents who send their children to this school. It is the school that we tried for Mary when she was younger because it was the only deaf nursery school program we could find. It is the same school that after seven months gave up on my sweet girl – which in our case was for the best. I know the parents who do send their children to this school believe strongly that through hard work and perseverance, their child speaking as opposed to signing will give them a better chance at a “normal” and “successful” life later on in a “hearing and speaking world.” I get that. I completely get that. I would be lying to myself if I said there wasn’t still a part of me that hopes that someday Mary will speak again. And I think it is a very similar line of thinking to the parents of autistic children who initially hunt down every therapy, any diet or biomedical treatment, hours upon hours of ABA and social skills groups so that their autistic child can learn how to be “normal.” And, sure, for some deaf children and for some autistic children, the appearance of normalcy is a completely attainable goal. But the work of getting there and maintaining it can be completely exhausting. That is a choice that is made within a family. We are all just trying to do the very best we can for our children, and if that works for your family and your child, then that is what you need to do. After sampling some of that lifestyle, we chose a different path.

After we left the first school, we were welcomed into Mary’s current school. This sacred place I was telling you about. At her old school there was constant crying, sheer exhaustion, even seizures brought on by intense fatigue, and regressions. But here, she has blossomed. Here, she smiles and flaps her hands excitedly as we pull through the gate each morning. Here she is greeted by friends and smiling teachers. Here they watch her and take their cues from her. They accept any form of communication she is able to give. They recognize when she makes a choice with just her eyes, they cheer when she makes a choice on her ipad, and they encourage any kind of gesture she is able to make. They encourage and celebrate her, just as she is. They accept her. And she has made such progress here because of it. Because, here, no one tries to change her. No one tries to make her “normal.” Here there is just patient, loving encouragement and acceptance.

It is unlikely that in the hearing world you would find folks frowning on the use of American Sign Language. In fact, in many large events, political speeches, performances, and even emergency announcements, you may see an interpreter standing just to the side, making it possible for the deaf people in the audience to understand what is being said. No one gets angry with a deaf person for being unable to hear. They simply make the necessary accommodations and move on. Why, then, is it so hard to believe that this same society could simply make the necessary accommodations for the autistic community? When a deaf person signs instead of speaking, we do not instantly assume they have nothing to say. We either converse in ASL, or find an interpreter, or even a pen and paper if need be. So, why when an autistic person is communicating through behavior do we simply assume they have nothing to say, or that they are lost in their own world, or that whatever it is must be something that needs to be normalized?

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.

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