Left-Hander's Day - #WondrousWednesdays

Today is Left-Hander's Day and I'm celebrating because I'm left-handed! If you're not left-handed, you are supposed to celebrate by only using your left hand to do tasks.

Everyday, us South Paws have to deal with a world not made for us (sounds a lot like being Autistic, doesn't it? lol). Doors open the wrong way. Chain saws and golf clubs are all backwards. Scissors don't work. We bang elbows at dinner tables.

But it's ok. I still have a sense of humour and pride. I don't really put much thought to it on a regular basis.

It only really comes up now when trying to teach my son something manual. I see if I can teach him "backwards" and then I tell him to find his own way to do it. I'm not sure we'll be tying a lot of shoelaces. I know it took me forever to figure that out.

Anywho, if you can celebrate with me, please do! And report back. Hopefully no one injures themselves. Don't blame me if you do.

#WondrousWednesdays - Autism Acceptance Interview

Paula is a great Autistic Advocate and she interviewed me for her Interview With Autistics Series. Read all about me here! 

 You should check out the other interviews along with the work she has put into Autism Acceptance - which started as a day, then became a month and then a whole decade. Hopefully by the end of this decade, we'll be further ahead. There's also my post on why we need more acceptance and not awareness. April is coming up and it's considered "Autism Awareness Month" - we need to counter the fear-mongering press with acceptance. 

Raising Happy Kids - #WondrousWednesdays

Want to know the secrets of raising happy kids?

There's a nice infographic by Happify which reveals some scientific studies on childhood happiness. They give us an idea of what makes kids happy and healthy - some pretty obvious stuff, like the love and acceptance of parents. Dads come out pretty important, in case anyone needed a reminder. I think a lot of dads forget or don't realize just how important they are.

There's also the concept of not praising children for their smarts, but for the effort they put in. It's about supporting their self-esteem and resilience, not their ego.

See the complete infograph here: http://www.happify.com/hd/the-science-of-raising-happy-kids/

The happiest kids were in Mexico, Spain and Brazil, so maybe we can learn something from them....

Click here for more Wondrous Wednesday posts!

#WondrousWednesdays - The Life Of An Aspie

Another post in the Wondrous Wednesdays series!


1) Give a short description of yourself and family + blog.

My name is Alyssa Huber, and I’m from Illinois. I’m 22 years old, and I have Asperger’s Syndrome. I’m an aspiring filmmaker (it’s my major) with a lot of creative hobbies; writing happens to be one of them, so I often write about my experiences with AS on my blog, “The Life of an Aspie.” When I’m not at college, I live with my mom, dad, two brothers—I’m the middle child—and my dog.

2) What is your biggest challenge with your disability?

Sensory issues. They are at the core of my deficits. While social disadvantages are common with AS, I’m actually quite good with conversation and I’ve learned to pick up on most non-verbal cues, and I can speak eloquently and make friends. It’s my sensory issues, however, that keep me from going out in public some days, and sometimes I’d miss a class or two, or have to cancel social events so I can rest. It’s draining for me to be around florescent lights, loud ambient noise, or vibrations from things like bass speakers and large vehicles. I also have very sensitive skin, so I have to wear soft, loose clothing, and I can barely wear jewelry.

I also have a lot of what I call “transition anxiety,” where my head gets fuzzy if my routine, or major aspects of it, changes. I make very specific plans to ease the transition, and they always have to be done ahead of time, and I absolutely have to stick to it. So I’m pretty much screwed when it comes to sudden, unexpected changes and events.

3) What is the greatest gift from your disability?

There’s a good number of them, actually… but I’ll list only three here.
--I am very creative and my talents lie in art, music, singing, writing, etc.

--I am very accepting of others since I understand what it’s like to not be accepted. And I’d stick with my friends through thick and thin.

--I am very logical and methodical, and I’ve been told I give solid, practical advice.

4) What’s one thing you want people to know about your disability that many don’t seem to understand?

That aspies, in spite of their awkwardness, are usually loyal and honest, and would make great friends if people could be patient and forgiving with them. There also needs to be a more general understanding of what AS is and how it works, so others will know the reasons behind our behavior.

5) What has been the best part of maintaining a blog?

It’s a great outlet to practice my writing skills. It’s also a good way to express what it’s like to live with AS.

6) What is a typical day like in your life?

Depends on whether I’m at college or at home… but I spend a lot of time at the computer: editing videos, writing, doing homework, and socializing on the internet. I also take the bus often when I’m at college, either just for fun or to go grocery shopping. I love grocery shopping. And lists. I’m always making lists for everything, from shopping to homework to everyday tasks.

7) What’s your favorite pastime?

As I’ve mentioned before, I love writing. I also like to roleplay with friends as sort of a social writing activity, as we’d type out stories and interactions novel-style. Other than that, I love singing and playing my keyboard, making paper flowers, and drawing. And I will admit I’m also a gamer… I love games like Skyrim and Little Big Planet 2, mostly for their customization features.

8) What’s your favorite food/drink?

Anything that tastes good and isn’t spicy. I particularly like Italian and Asian food. And gummy candy, if that counts.

9) Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

To all aspies and NT’s alike: be strong, never give up, and keep your eyes open for bits of beauty and happiness in everyday life. And know that you’re never alone.

10) Would you like to recommend other bloggers my readers would be interested in reading or whom I should interview?

Yep. I’ve only read a couple other blogs, but I’ve found some good ones from others with AS and autism.

“Aspects of Asperger’s” http://aspectsofaspergers.wordpress.com/

“Autistic Chick” http://autisticchick.blogspot.com/

#WondrousWednesdays - Hop 'n' Snack

A whole lot of things coming together at once (the success of the Night of the Living Stim chat, Autism Speaks becoming more ridiculous, and a few of us still having a sense of humor remaining) meant we created a different sort of protest for those of us who can't make it to Washington.

We've named it Hop 'n' Snack - poking fun at some of what Autism Speaks has decided makes living with an Autistic person an absolute nightmare - we raid the fridge and jump on furniture. Totally. And we even take off our clothes. Those silly Autistics, always getting into trouble!

So if you'd like to join us in the horror of horrors, go to the official Hop 'n' Snack page, make a video and post away.

Even if Autism Speaks doesn't listen to us, this is way more fun than just shaking a middle finger at them. 

#WondrousWednesdays - Varied Interests and Autism

If you look at my cv, I have a strange mix of work and volunteer experience. It shows I've jumped around jobs a bit. It shows I've been both an employee and an entrepreneur (at the same time right now also). It shows I speak languages that aren't particularly useful to be fluent in in North America. I've travelled to 14 countries. I'm into yoga, science, teaching, helping professions - but I've also worked at UPS, danced ballet and played guitar...and drums. It's a completely random mish-mash of weirdness. 

It makes me look scattered. It makes me look like I can't focus or don't know what I want to do with myself. That's what people see when they look at my cv. That's the negativity I've internalized. 

But no more.

I've met many others like me. (Read Full Spectrum Mama's bio, for example) Our varied interests show we've tried many things. It's testament to our spirit of adventure. We have open minds. We are not scared to try, experience and maybe even fail - we don't have to be amazing at everything we do, but we've tried it to see if we like it. 

We dream big and follow them. We research and learn and embrace. We live full lives. I'm sure I've done more things before 25 than most people accomplish by 50. I'm not saying this to brag, I'm just saying this may be a product of my brain and how I think. I've been unemployed and underemployed, but overall, I seek situations out where I can follow my desires, however strange they seem.

It's an interesting dichotomy: I live with anxiety but lack fear to live life to its fullest.

#WondrousWednesdays - Tips

I didn't have anyone to interview this week, so I'm posting interesting posts, tips or articles I've found helpful over the week and could be useful for others.

Adult SPD and ADHD issues

3 Causes of Anxiety and What To Do About Them

How To Teach A Child To Tie Shoes In 5 Minutes

The Floating Bed - I want one! Birthday present?

Tips For Living With A Toddler

#WondrousWednesdays - Night Of The Living Stim

The first ever Night of the Living Stim party will be held tomorrow night - celebrating all things stimmy!

Use hashtag #LvngStm tp join in the fun, talking all about stims.

#WondrousWednesdays - Dada!

This Wondrous Wednesday, I'm introducing you to Hubby, also known as Dada! As usual, I let the interviewee do most of the talking:

I live in Montreal with my wife Kelly and our four year old son. I run My Secret Atheist Blog (MySecretAtheistBlog.com), am pretty sure I probably have some form of ADD (not yet diagnosed), work in the medical field, and I have degrees in Computer Science and Classics. I was very Catholic but now an Atheist and rather angry at Catholicism and religion. Thankfully I have a blog in which to vent!

What is your biggest challenge with your family member’s disability?

Serious communication problems can sometimes occur. It’s fairly normal for family members’ brains to work differently, but when you have a family where likely everyone has a disorder that can affect communications, there is no baseline with “normal” at all.

The real challenge is to remember not to read extra meaning into what Kelly says, and for me to communicate how I feel, which often means stopping to try to figure out what I feel.

The more my wife and I have begun to understand ourselves and each other (through books and the Internet), the easier it has become for us to understand each other and to realize we’re actually all a very good fit for each other.

What is the greatest gift from your family member’s disability?

There is never a dull moment in our house because we have a house full of very original thinkers!

My son is probably the happiest and most vibrantly alive person I know. He is brimming full of life and enthusiasm - more so than any child I have ever seen. What may seem mundane to most people fascinates him. The Little Man speeds through life as if every second counts. I hope he never loses this sense of wonder.

My wife is the most honest person I know who always tells things like they are. The only mind games going on between us are the ones I will occasionally project into the meaning of the words she uses.

What’s one thing you want people to know about your family member’s disability that many don’t seem to understand?

That although my son is autistic, he’s not stupid. Although he may not appear to be listening, he can still hear. And although he may have problems expressing himself, he still has important things to say.

I think there is this misconception that because he is autistic and doesn’t always appear to be listening that he cannot hear or understand what’s going on. This is far from the truth.

Even I am guilty of thinking this way. Before he got his iPad I didn’t have a grasp of just how much he knew. It wasn’t until I saw him easily completing all the puzzle games and challenges in his apps and actually excelling far beyond what one may expect for his age that I realized just how intelligent he really is.

Now that his verbal skills are better this isn’t so much of a problem, but it does give me pause and make me reconsider how difficult it must be for those who have challenges speaking or expressing themselves yet have no intellectual disability.

What has been the best part of maintaining a blog?

I find writing really therapeutic, andI feed the activist in me by writing as well. I believe my blogging helps the atheist movement and the atheist community here in Canada, and may help to inform readers in other countries as well.

I also use my blog to support a small Secular Humanist primary school in Uganda. So far, using the blog as a platform, I have managed to raise enough money to provide a chicken coop to help bring eggs and meat to the children. I have also helped them purchase new land for a permanent home for the school, and helped them bring electricity to the new land through fundraisers partnering with Atheist Alliance International. Right now I am trying to raise enough money for the school to begin building classrooms on the new land.

What is a typical day like in your life?

On the weekdays I wake up having had not enough sleep. It has to do with my early morning schedule. On the weekends I wake up to a four year old lying on my chest and breathing into my face, telling me it’s time to wake up. I can think of many worse things to wake up to than a smiling child though.

What’s your favorite pastime?

I have a few right now. I like to write on my blog, play with my son, watch television and spend time with my wife.

What’s your favorite food/drink?

When it comes to junk foods, I love them pretty equally. Pizza, rotisserie chicken, hamburgers, American Style Chinese food. You name it, I love it.

Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

Do your best to live in the moment and not worry too much about things you have no control over.

Would you like to recommend other bloggers my readers would be interested in reading?

I have so little time outside of work and home that most of it is filled with me indulging my thirst for writing by blogging. But I do enjoy reading the Ramblings of Sheldon. He’s an ex IFB Christian who now considers himself agnostic. He also suspects he may be autistic.

I’ve also been following Conor Robinson’s blog, Godless Pilgrim (http://pathfindersproject.com/conor/). He’s the head of a group of humanist Pathfinders who are sort of like a secular Peace Corps.

#WondrousWednesdays - One Quarter Mama

The people I've asked to interview have been super busy (such is life!) so I'm answering this week's questions myself and maybe giving some of you a little more info. Feel free to ask me anything in the comments!

My name is Kelly and I write http://OneQuarterMama.ca. When I have time, I also write http://SoloWomanTraveler.ca.

I'm in my early 30s, married to an amazing man and have a four year old Little Man.

I am on the spectrum and have Sensory Processing Disorder. Our son is on the spectrum and dyspraxic/apraxic. We believe Hubby has ADHD, but aren't sure yet.

What is your biggest challenge with your (or your family member’s) disability?

Oouf! Big question! Probably society's lack of acceptance for differences.

What is the greatest gift from your (or your family member’s) disability?

I've written before about the benefits of my Autistic brain. The greatest gift from my son is well, just him being him. I am lucky I have him and he lights up my day. There hasn't been a day he hasn't made me smile and he has taught me patience and perseverance.

What’s one thing you want people to know about your (or your family member’s) disability that many don’t seem to understand?

He's NOT stupid. Autism does not make you stupid. Autism does not make you behave badly. Autism does not mean you don't care about anyone. We are not in our own world. We're here with you, communicating and loving you, but we sometimes speak a different language. Learn our language and really listen to us. You'll see we're smart, loving and amazing people.

What has been the best part of maintaining a blog?

I love connecting with so many different people. I have learned SO MUCH from other people. They inspire me and keep me going on days where I feel hopeless. 

What is a typical day like in your life?

I am woken up either by the human child alarm (he's very accurate) or a clock alarm at around 7:45am. We say our good mornings and get dressed for the day. I get him breakfast and put him on the bus for school. Then I take a shower and have breakfast before leaving for work. I work a normal 8-hour day in a large office and get home around 7pm. Hubby and son have already eaten supper by the time I get home, so they do bath time while I eat. Then I make his lunch for tomorrow and get him ready for bed. Hubby does the rest of the bedtime ritual and I organize myself for the next day. I blog, read or watch a bit of TV. Then it's off to bed usually by 11pm and we start all over again.

What’s your favourite pastime?

Writing and listening to music. I guess that's two. I'm allowed to cheat because this is my blog :p

What your favourite food/drink?

Food: chocolate maybe? Drink: chai tea

Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

I'll share my favourite quote, which I have tattooed to my arm: Sobald du dir vertraust, sobald wiesst du zu Leben - Goethe

"The sooner you trust yourself, the sooner you know how to live." Life is so much less scary when you trust yourself and your instincts. When you doubt yourself, you get lost. 

#WondrousWednesdays - Different Standards

I read this fabulous article about how us special needs parents are not "saints" or "angels" - or any of the weird things I've heard/been called.

You don't need to hold us to a different standard. I've said before, things might be different but that doesn't make them bad or worse.

#WondrousWednesdays - Two Left Feet Momma

This week's interview is with Two Left Feet Momma! She is my sister-in-law, so she's talking about my niece. It's interesting how these sorts of things seem to run in families. I have never met my niece, since they live at the other end of the country, but I hope to one day and I'm sure the Little Man would have a lot of fun with his cousins.

***

We live in Langley, BC, Canada. Daughter is 5 years old, diagnosed with Sensory Processing Disorder and Anxiety (suspected high functioning Autism). I work full time as an Environmental Health Officer, currently on a Leave of Absence to support my daughter during her transition to school (kindergarten!). 
What is your biggest challenge with your family member’s disability? 

Being in a group setting is difficult, she becomes easily overwhelmed by sensory and social stimulation. Trying to make and keep friends as well as navigate the social complexities is challenging for my daughter. 
What is the greatest gift from your family member’s disability? 

Amazing memory! She can remember movies word for word as well as events in detail from years ago, and she is only 5. She is also becoming a pretty good little artist.
What’s one thing you want people to know about her disability that many don’t seem to understand? 

That it's not behavioural, she isn't "acting out." A firm discipline will not "fix" her. She is unique and requires a unique way of parenting. 
What has been the best part of maintaining a blog?

To me it's my safe place to talk. Where nobody is judging me about my family, my parenting, my decisions.
What is a typical day like in your life? 

Routine! We do similar things in a similar order. It keeps the chaos down
What’s your favorite pastime?

Drawing or hiking 

What’s your favorite food/drink? 

Greek food and wine
Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem? 

Try and live life for today, try not to dwell on what might be tomorrow.

#WondrousWednesdays - Life With Asperger's

Gavin

This Wondrous Wednesday I'm introducing Gavin:

I'm 44, I live in Sydney, Australia and have been married to my childhood sweetheart, a neurotypical woman, for 16 years. We have two boys aged 13 and 10.  I lost most of my hearing at about age two, to an out of control ear infection and I'd always assumed that my differences were due to my hearing loss.  The one thing that didn't make sense was that I had trouble fitting in even with other people with hearing losses. 

It wasn't until my eldest was diagnosed with Asperger's syndrome eight years ago that I realized that there was another reason.  

As it turns out,I have Asperger's Syndrome. My eldest has Asperger's Syndrome, Non-Verbal Learning Difficulty and Attention Deficit Hyperactive Disorder - Inattentive type. My youngest has High Functioning Autism. I started my blog, Life with Aspergers (life-with-aspergers.blogspot.com) because after my diagnosis, I started rediscovering myself and I began to realize that at the time, many of my insights were rare. I wanted to give the world a chance to understand individuals with Asperger's syndrome and thereby give my kids and others a chance to share the same opportunities as neurotypical people.

My original ambition was to be a writer but for various reasons I ended up doing a degree in Information Technology instead. I now work in the finance sector doing computer work but continue to "scratch my writing itch" by blogging. In my spare time, I am also a cub scout leader.

2) What is your biggest challenge with your (or your family member’s) disability?

The challenges are constantly changing but I guess my biggest challenge is with my eldest son's ability to stay on task and retain information. I have a very good memory for facts and events and I don't take notes in meetings because I can usually recall the entire conversation.  My eldest son is the complete opposite. If he receives a two stage task, he is unlikely to even complete the first stage. It's very hard to keep reminding myself that his abilities are different.

In his early years, it was hard to understand that this was due to difficulties he had with processing instructions rather than "defiance".

3) What is the greatest gift from your (or your family member’s) disability?

Our family displays some fairly original thinking. My eldest was asked, in kindergarten, to hold up a mirror and draw what he saw.  His classmates all drew their faces, which was the point of the exercise. He did not. He walked around the room and drew what he saw, backward, blurred and interconnected.  It's an amazing piece of art.  My youngest is not artistic but displays an aptitude for computers which I have never seen in another child his age.  His creativity seems to manifest in intriguing ways to get around computer system defenses and limitations. At age seven, he was hacking wi-fi networks, breaking windows passwords and he even managed to arrange (and pay for) an overseas wedding for himself, including cars and accommodation. These days we know better than to try to limit him using technological means and we have been trying to teach him how to be a good online citizen.

4) What’s one thing you want people to know about your (or your family member’s) disability that many don’t seem to understand?

I guess the most important thing for others to know is that we prefer being the way we are. We don't "suffer" from Autism (which Asperger's is a form of). If we suffer from anything it's external to us. We suffer from the judgement and limitations imposed by others and by society.  It hurts deeply every time we hear of research being conducted to remove or "cure" our condition.  

5) What has been the best part of maintaining a blog?

The best part of blogging has always been the comments. My readers give such supportive feedback and ask such interesting questions.  Their questions will often cause me to reconsider and often completely change my point of view. I think that this is important for my own self growth.

6) What is a typical day like in your life?

My typicial Mondays start at 5.30am. I spend the next ninety minutes getting ready for work and getting my kids ready for school. It's a daunting task as they'll wander off to their ipads or TV (or anything else) whenever the opportunity presents itself.  I take a bus to work and try to sneak into my office without human contact.  I do my best work in the mornings before constant interruptions, meetings, and random computer issues pull me off important projects to deal with things "in the moment".  On Mondays I leave early at 4.30 and hurry home. 

As soon as I arrive home, I need to be changed and off to Joey Scouts to help my wife who is a leader there. Cub Scouts starts immediately after Joeys and I usually don't get home until 9pm, when I have dinner and see my boys into bed.  On the other days of the week, I work an extra ninety minutes at work and usually don't get home before seven.  The hardest thing about all of this is that I really don't get to see enough of my kids.

7) What’s your favorite pastime?

I'm a big movie buff but sometimes I think that I enjoy "collecting" movies (and indexing them) more than I do watching them.  

8) What’s your favorite food/drink? 

Without a doubt, it is ice cream. 

9) What’s a question I should have asked about you?

Anything about Asperger's syndrome really. My blog is full of information on how it feels to be inside a meltdown, what is going through child's mind when they line up toys and all kinds of other stuff.  It's funny but I can remember so many of my childhood thoughts and moments that re-evaluating them now that I know about Asperger's syndrome has provided me with some unexpected and interesting insights.

10) Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

Although I do write poetry from time to time, it's usually for comedy purposes.  I think the best I can do here is a tip.

The best tip I can probably provide is simply a reminder that Asperger's syndrome and Autism are words used to describe the occurrence of a subset of a collection of behaviors in an individual. No two people are ever the same and we're still learning about new traits and differences. It's not an exact science.  If your child receives a label, just remember that it is only a label. It doesn't change your child. Your child should always be treated as an individual and never simply as just a label.

11) Would you like to recommend other bloggers my readers would be interested in reading?

My favourites are Rachel Cohen-Rottenberg (from http://www.disabilityandrepresentation.com/) who is always tackling the biggest and most painful issues in the community. Rachel touches issues which have no clear black and white solutions and brings out the best and the worst in her readers. Marita from Stuff with Thing (http://www.stuffwiththing.com/), an Australia blogger whose life is full of color and comedy. She shows us  exactly how much fun a mother with children on the spectrum should be having and Chloe Rothschild, one of my fellow writers at Special-ism (http://special-ism.com/) who represents the cutting edge of inspirational blogging youth with autism.

#WondrousWednesdays - Yes, That Too

This Wondrous Wednesday I'd like you to meet Alyssa. Without further ado, I'll let her speak for herself:

I'm a 20 year old Autistic person as I write this, though I'll be 21 by the time this gets posted since there are no Wednesdays between now and my birthday. I will also be either in China or on my way to China. [I'm a triple major- mathematics, mechanical engineering, and Chinese are the majors.] I'm initially from the New England area, and I never really left except for the whole study abroad thing. My personal blog is Yes, That Too, which also has Facebook, Tumblr, and Twitter existences, and I seem to acquire other blogs as I go. I've got posting privileges on We Are Like Your Child, Autistics Speaking Day, Autism Positivity Flash Blog, and probably some others I forgot, plus I ran a few flash blogs where I'm an admin. Oh, and I attempt to run a business called Because Patterns, though cards are all I ever really manage to sell. Yes, That Too is a whatever-I-want blog, and it's been pretty heavily disability for as long as I've had it.

I've worked as a grader and/or classroom assistant with the Art of Problem Solving since I graduated high school, which has been great. I've also tutored and graded on and off at my college's math department (good,) worked at the information technology help desk (terrible because it made my phone anxiety even worse,) and done research in nanotechnology (really, really cool but also slow.) 

 What is your biggest challenge with your disability?

People's reactions when I tell them I'm Autistic might actually be the most challenging thing about it. I wish I were joking, but... yeah I think that might be the hardest thing to deal with. I get insistence that I'm not really autistic, demands that I call myself a person with autism instead of an autistic person (totally fine being asked why I have a given language preference, but telling me I can't have it is bad,) and people starting to talk to me like I have an intellectual disability (bad because of the way people talk to people with intellectual disabilities, not because of some idea that I'm better because I have a higher IQ or whatever.) Oh, and every disagreement ever is now because I'm autistic and don't really understand. I guess that means my biggest challenge from being Autistic is ableism.

What is the greatest gift from your disability?

I have to choose only one? :(

I don't know if "immunity to culture shock" or hypergraphia/hyperlexia is the one I should pick. I'll go with the hypergraphia/hyperlexia, since immunity to culture shock is a nice application of an impairment and the hypergraphia/hyperlexia means I don't need to edit my papers for school and I can blog daily.

What’s one thing you want people to know about your disability that many don’t seem to understand?

Autistic people are people. Like, I know it seems simple enough, but I think that's really at the root of a lot of the problems I run into: people seem to have this idea that if I'm Autistic, I'm not quite a real person, and I think that's why they think a lot of the stuff they do is OK. [I think reminding folks of this fact is where person-first language started out, and if it worked I'd probably like it a lot more than I do.]

A work of Alyssa's Art

What has been the best part of maintaining a blog?

Well, writing is the way that I process things that happen. If I don't write, it's hard to process, and if I don't have a thing that I want to do with the writing, it might not happen. So blogging helps me process stuff, both my daily life stuff and rest of the world stuff.

What is a typical day like in your life?

That's super-dependent on time of year and such, since college vs. summer makes a huge difference. Over this past summer, it's been get up, get on computer, read what all happened on Facebook and Tumblr since I went to sleep earlier than everyone else, if I see anything I want to write about I do. Then I eat food, and I'll either read other stuff or fool around on the internet or work on any of my longer projects. Those include a book about Tamora Pierce's work and neurodiversity, a paper on the erasure of Queer Autistic people, and getting ready for China. I'll move around between those things, plus I'll eat a couple more times. If it's a day that I assist class, I'll log in around 7:15-7:20pm and I'll go to sleep soon after class ends. In China I'm not sure what the typical day is going to look like.

What’s your favorite pastime?

I really like playing Ultimate. 

What’s your favorite food/drink?

That totally varies by day. Whatever I'm craving at the moment, which tends to be noodles or pickles or chicken legs. I also really like hot tea with a little bit of sugar and a lot a bit of milk.

What’s a question I should have asked about you?

That's super open-ended, and I am not actually able to make my brain give me an answer. Certain kinds of questions can send me into a cognitive mess, and that's one of the questions that does it. So I guess I'll just point out that there are other A/autistic people who have this kind of issue instead of answering. 

Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

Really think about your goals. Ask yourself: Am I doing this because it helps me do what I want to do, or am I doing this because I think it's expected? [Ask yourself something similar when it comes to therapy/education for disabled kids- is it to help them do what they want to do, or to make them look less disabled? Those aren't the same thing.]

Would you like to recommend other bloggers my readers would be interested in reading or whom I should interview?

I don't think any of them would be game for interviewed, but Amy Sequenzia, Amanda Baggs, and Neurodivergent K are people I think are really good to read.  

#WondrousWednesdays - Living in a Hospital For 45 Years

I recently read about Paolo Henrique Machado - a man who has been living in a hospital in Brazil for the last 45 years.


He got polio when he was just a baby and has been there ever since. He shares a room with a woman who also has polio, Eliana Zugli.

They need to be hooked up to respirators constantly. Because of this, they have not been able to leave the hospital very much until more recent advancements. 

Despite this, he is a computer animator, and she is a published author and painter (using her mouth).

Though I cannot speak Portuguese and have not spoken with them, I get a sense of their spirits and lust for life from their art and photographs. They are both truly wondrous individuals and I'm happy to introduce them to you.

Wishing you a Wondrous Wednesday!

You can connect with Paolo on Facebook.

#WondrousWednesdays - Reinventing Mommy

This week for my new Wondrous Wednesdays series, I'm interviewing Jeanie from Reinventing Mommy. Stop by her blog and say hi! 

Intro: 

I'm Jeanie and I primarily write at my blog Reinventing Mommy (http://reinventingmommy.blogspot.com), but I have also a frequent contributor to the SPD Blogger Network and Hopeful Parents.  I'm also syndicated on Autisable and have been syndicated on BlogHer.

I am a 30-something freelance writer and stay-at-home mom to the star of my blog - and everything else I do - Jack. Jack is a 4.5-year old sweetheart of a boy who has autism and what I like to call an "alphabet soup" of diagnoses and special needs (meaning there are too many to name!). I've been married to my husband Brian for 7 years, and our family also includes Mason, a 15-year old Pug with a heart for special needs kids like his boy. We live in the Atlanta area.

Before Jack was born, I was a Quality Engineer in the medical device/transplant industry with a background in biology and genetics. Once Jack was born and began to have problems keeping food down, I left my job for what I thought would be a temporary interlude into stay-at-home parenting until we sorted the feeding issues out. 4.5 years later, they still aren't sorted out and we have added a plethora of other issues to the "sort out" list, so I'm learning to embrace the new direction my life has taken.

What is your biggest challenge with your son’s disability?

People are always surprised when I tell them what our greatest challenge is right now. Some might think it would be communication since Jack is severely speech delayed, but we anticipate his needs and read his behavior so well that words aren't always needed. Others might say motor skills, which keeps Jack dependent on us for many things, but we are just used to that aspect of caring for Jack.
I would say that our biggest challenge is a toss-up between feeding and sensory processing challenges. With feeding, we constantly worry about whether or not Jack is eating enough (he weighs 32 lbs. at 4.5 years old) and whether or not he will choke. He has dysphagia - a chewing and swallowing disorder - on top of his SPD, which makes feeding Jack safely without stressing him out a real challenge. With his SPD, I wish that I could help him feel more comfortable and at ease in his world. Unfortunately, I cannot control all sensory input out there in the world, and it's hard to see your child feel so fearful of the world and the unknown.

What is the greatest gift from your son’s disability?

Compassion.  Being Jack's mom has opened my eyes to the wonderful diversity of abilities in our community. Jack has shown me that every single person I encounter has value. Jack has also taught me gratitude, because each and every little milestone achieved or lesson learned was hard fought for and well deserved by him. I am grateful for the little milestones that people miss, like the first time he dances to a song or the first time his arms wrapped around my neck during a hug. I'm grateful that I noticed and appreciate those milestones, because it's all precious.

Beyond that, being a special needs mom has introduced me to some of the greatest people I have ever had the privilege to meet - from fellow special needs parents, to teachers and para-pros, to therapists and coordinators and everyone else who works with our children. They have some of the biggest hearts of anyone you'll ever meet, and it has been an honor to share this journey with them.

What’s one thing you want people to know about your son’s disability that many don’t seem to understand?

I think many people see autism is a diagnosis of "can't dos." I hear often that children with autism can't make eye contact, or that children with autism can't speak. I've heard that autistic children can't read or can't love. For all of those, "can't dos" that people list, I can't think of a single one that is an absolute for our children. I want people to see autism for all of the "can dos" - like how my child can finally speak, and how he can see things in a completely different and unique way from the rest of us. My son can make eye contact - just not consistently or for more than a fleeting moment - but he can do it. When people tell me that children with autism can't make eye contact, I tell them that mine can, and there are many, many other things he can do, too.

Jeanie and her son Jack

If you could magically make your child’s disability disappear or have a totally different child, would you?

Honestly, I have a unique perspective on this and wrote an entire post on this subject called "Would You?"  I lost a baby in the second trimester and doctors attributed her passing to a likely trisomy or monosomy, but then I also have a living child with a disability as well. Would I cure my living child? I don't think so. I believe it would make him a completely different person than the child I have come to love if I were to do so. What I do wish I could do is alleviate his challenges, but I would not take away the fundamentally unique way in which he sees the world.

As for the baby I lost, I say all the time that if I could have magically taken away that extra chromosome so that my baby would live, I would do so. I never got the opportunity to get to know her like I know my Jack and I would absolutely cure her of her disabilities if it meant that I had the chance to get to know her instead of mourning her loss.

So, I think the concept of "cure" is complicated. I wouldn't cure my son of his disabilities because they have made him the wonderful little boy I know and love, but my daughter - whose disabilities took away her opportunity to live - I would cure in a second.

What has been the best part of maintaining a blog?

The best part of maintaining my blog and Facebook page has been the sense of community I felt in doing so. I'm in a very different place now - acceptance wise - than I was when Jack was diagnosed, and that is in large part to the community that helped support me along the way. I am so glad to be a part of the daily experiences of some parents who are new to this process, and I hope that my words give them comfort just as the words of others comforted me. I pray that those new families just receiving a diagnosis will read my blog and feel that they are understood and not alone.

What is a typical day like in your life?

It's messy.  It's busy.  We cram school - Jack is in a full-day preschool special education program - and therapy and all of the regular things a family needs to do in our day, but we have to build in extra time for meltdowns (they happen!) and helping Jack work through issues that arise and understanding what's going on. However, after 4.5 years of raising Jack, we don't have the system perfect, but we manage and take things in stride. We understand that there will be struggles, but we try not to let it define our days.
And - of course - every day starts with coffee.  Lots and lots of coffee.

What’s your favorite pastime?

Besides writing?  Running was my favorite past-time - I love running 10Ks and was training for a half-marathon - but then I got injured and once I was healed I got pregnant.  I haven't started running again since the baby passed away, but I hope to get back to running when the time is right.

I am also an avid reader and always have been.  've always got a book or two I'm working on at the moment.

What’s your favorite food/drink?

Chinese food and sushi - hands down. I could eat it every day, though the Hubs is disgusted by sushi so I try to limit it.  We all have our sensory issues, I guess!

I'm a big coffee drinker, but I'm not as particular about coffee. For medical reasons, I have to drink decaf, but I think all decaf tastes about the same (not as good as the real stuff). I also LOVE tea, which usually has less caffeine, so I can get away with it. Just like Patrick Stewart of Star Trek: The Next Generation fame, I love Earl Grey tea.
I also won't turn down a good Reisling. 

Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

One of my favorite quotes comes from Carl Sagan's book Contact, and I think it speaks well to the special needs community, particularly what it is like in the early days after a diagnosis.  I always felt comfort in these words...

"You feel so cut off, so lost, so alone, only you're not.  See, in all our searching, the only thing we've found that makes the emptiness bearable is each other."

And he's right. In the wake of a diagnosis, you'll find solace in the support of others. Don't feel like you have to walk this journey alone, because you don't. There are plenty of us here for you.

Would you like to recommend other bloggers my readers would be interested in reading?

The blogger that got me through those early days was Jess from Diary of a Mom.  I'd recommend her earlier blog posts to anyone who is just starting this journey.

As for a good compilation of different perspectives on various disabilities, check out Hopeful Parents (http://www.hopefulparents.org).