Special Needs Spotlight

You'll find out more about us from an interview conducted by Miggy at This Little Miggy, where she featured us in her Special Needs Spotlight series.

Make sure to read the other interviews - there are so many amazing families and stories. I learned a lot about different disabilities.

Thanks for interviewing us, Miggy! And I hope to see her and her family in my WondrousWednesdays series soon!

#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. 

Life Without Pink Feature - Boy Moms

Today we're featured on Life Without Pink - a blog that chronicles life being a mom of boys.

If you already read me regularly here, you know I love being a mom of a boy - it's everything I dreamed of. I'm just not a "girly-girl" myself, so I'm not sure how well I would do raising a girl. I think I can do a really good job of raising a good man though, and that's really important to me.

Anywho, check out our little interview here.

Is School Safe?

(Trigger Warning: abuse of power, injuries against a disabled person)

Just recently, I wrote about law enforcement abusing their powers and how they may not always be trusted to protect when it comes to the special needs population. Scarier still, these sort of "above the law" attitudes can infiltrate all areas of society, including our school boards and schools.

This seems to be what happened last month to Shawna, mother and blogger at InnerAspie. About three weeks into the school  year, her normally happy and active 9 year old Autistic son, who she refers to as "Beans" in her blog, became quiet and extra cuddly. A bit before this, her maternal instincts told her something didn't seem quite right. She was not getting very clear information from his teacher in his communication book each day and he also completely stopped drinking. Looking for more feedback and answers, she scheduled a visit with the teacher.

Before this meeting could take place though, he came home one day with horribly bruised wrists (pictures on her blog). She immediately took him to the ER for x-rays. He is non-verbal, so she could not get any clear answers from him about what possibly happened. The next day, she took him to his regular doctor, who said the marks looked like he had been restrained. They could see the imprint in his skin of what could possibly have been a shoe print or jewellery. It is very hard to tell from x-rays of all the small bones in the wrists of a still-growing child, but there was possibly a small fracture.

No one thought to call and inform her of this. It did not happen in her home or on the bus - it had to have happened at school and no one is owning up to it. Even if it was an accident, why didn't anyone contact her to say what happened? These bruises were so huge, how could they not have been seen?

She called the police to make a report and was sent to the school police department, which is not exactly the most impartial authority, but she had no choice. Through their investigation, she was able to find out his para took him off his morning bus and reported the bruises to the nurse (the para claims). The nurse only has a record of examining the child at 10:30am. Why did it take her two hours to see him? The nurse said she wanted to call the parents, but that the teacher told her not to.

Really?

You know what? If my child were injured at school, I would much rather get two phone calls, even if they are redundant, than to get no phone call at all. Even with all this, no one is able to explain where these bruises came from. There are only three children (including Beans) in this class. These children are not supposed to be left alone. How could no one see an injury like this? Why doesn't anyone know what happened?

Even with all of the authorities involved - from police, to Child Protective Services, to the Special Ed Coop (which governs about 16 schools) - no one is admitting any wrong doing and she has no answers or solutions. So she is doing what she can do to keep her child safe - she is keeping him home and will home school him for at least this year, until either another school or safe option can be found.

This is a horrible disservice to an innocent child who did nothing wrong, never had any issues with school before and loves going to school. He is the one losing out on being out with his classmates because a teacher, or someone at the school, could not keep him safe. Did someone abuse their power and decide that forcibly restraining a 9 year old boy was the right thing to do? This person is still in contact with other children. Are these children safe?

What Shawna wants now is for everyone to know this story and for the higher governing bodies to know what is going on in their local districts. The lack of accountability in this case is appalling and it needs to be known. This is also tax-payer's money feeding these systems and this system is falling this boy and many other special needs children, no doubt. Remember that for every story you do hear about, there are always countless others suffering in silence because they do not have the resources or capacity to challenge. 

#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 - 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.