Posting of new content will be on hiatus. Delays in adding blogs may be lengthy.

Friday, December 19, 2014

Who Died and Made You Dr. Spock? A guest post from Dawn Marcotte



Our guest post is by Dawn Marcotte. who is the CEO of WWW.ASD-DR.com, a website designed to help teens and young adults on the spectrum live to their highest potential.



Disclaimer: For the Star Trek fans out there this article isn't really going to talk about Mr. Spock -Dr. Spock was a famous child specialist in the 60's.

I saw her laying on the floor, screaming at the top of her lungs about something. As a young single woman I just went to the next aisle and tried to ignore it, vowing that my children would never do that.   Why doesn't mom just pick her up and take her to the car - I'm sure they could come back another time.  I wasn't raised that way - I would have gotten spanked for sure if I put up such a fuss in public, or at home for that matter. I could tell by the looks of the other adults that I wasn't the only one who was thinking that.

Fast forward 15 years - God has a sense of humor
Now I am the mother with the child pitching a fit on the floor.
Now I understand that trying to pick her up will just make it worse. All I can do is ride it out and do my best to calm her quickly. This is the first chance I have had in a week to get to the grocery store and if we don't have the right foods she won't eat, so we have to get it done now.
I saw the looks from the other adults in the store and I know what they are thinking - then it hit me:
Who died and made you Dr. Spock? What makes you think I am a bad parent?
In the United States justice system we are supposed to assume innocence until proven guilty - can't we apply that to parenting too?

 I think that most parents love their children and we want to do the right things for them.
We want to teach them to be patient, kind, generous, strong, self- reliant, smart, honest etc.
If we assume that all parents want their kids to grow up to be good people, why do we assume that when a child is misbehaving it is the parents fault. That somehow the parent has missed a vital step in raising that child and they need to learn to 'parent' better. Like they forgot to feed them or tell them that screaming in the middle of a store is not acceptable behavior.

 We don't think that way about ourselves do we?  I know I don't. I happen to think I am a pretty good parent. I have worked hard to help my girls grow up to be intelligent, articulate, strong women who don't just accept what the world tells them. (Unless of course it is me and then they just have to do it because I'm the Mom.)  I am not perfect and I have made my share of mistakes along the way, but overall I have tried really hard and I think I have been at least partially successful. At least they are still talking to me and aren't making plans to get AWAY as soon as they can.

Children are actually people too. Yes they have limited life experience, but that doesn't make their emotions any less real. It doesn't make their needs any less important.
It is time to give each other a break. Real life isn't television where Dad is too incompetent to properly care for his own children and moms are too overwhelmed to even know what their children are doing. Neither is it Sesame Street where every adult knows exactly what to do in any given situation. Reality lies somewhere in between.

What if we assumed that the parent in any given situation is doing the best they can?  How would that change our reaction?

Would we perhaps he a bit kinder and offer some assistance?  Even just a smile and a nod of recognition that we know they are trying their best.

Would that small change in our behavior help other adults to make the same change? How would that change the world?

I think we need to start fresh with each other as parents and adults. Starting today I am going to try very hard to be more supportive of other parents, especially when they are having a hard time.
What do you think about how adults and parents treat each other?

Friday, September 26, 2014

Yogibos!




Last week, I was contacted by Yogibo.com to see if I'd be willing to accept one of their bean bags to review, specifically in terms of how my children on the spectrum found it. When I looked at the site, I started drooling. We were very kindly sent the Yogibo max, which is six feet by two feet by two feet and priced at over $200. 

I am in love with this bag. My girls are in love with it. My husband slept on it, it's that big. The cats are impressed. And the dogs think it is theirs when no one else is on it. 

The girls have laid on it, reclined on it, laid under it, laid side by side on it. You name it. They've done their school work on it. The couch has not been used since the Yogibo Max arrived.  That is how awesome it is.

If I had money, I would redo the living room in them! There are several options and lots of colors to choose from.  

Yes, I'm biased. We were given an expensive product free that my girls love, that provide sensory input that is calming, that makes them feel special. But, trust me when I tell you this is better than Temple Grandin's hugging machine. It's soft but heavy enough and large enough that when you lie under it, you feel pressure. I've used it that way. I would totally do a double in my room for me. It would be my safe space when I'm overwhelmed by kids, critters and the demands of my job and my anxiety disorder which tend to render me skittish and unwilling to be touched. 

So, anyone with 400 dollars, consider that to be my Christmas gift wish.

 
Yes, that's the Yogibo max under batman decorations and dogs.

Here's the Yogibo max out of the box.

Definitely dog approved.

Kids testing it.

Go to Yogibo.com to see all their awesome stuff! Kathleen's review is coming up!

Saturday, July 12, 2014

Summer Reading: From the Light to the Trancendent




For me, the summer leaves me feeling scatterbrained. Too much noise, too much going on. Chicken Soup for the Soul books provide a quick break, a breather, and a chance to focus.

The best part of Chicken Soup's books is the diversity of topics. You can find any topic that interests you, and then get dozens and dozens of different author's stories. And because the stories are short, it's okay if you only have five minutes to spare.

Above I've placed six of Chicken Soup for the Soul's newest books, books I thoroughly enjoyed and highly recommend.


Thursday, May 1, 2014

A Review of Eric Fischer's Collected Works of Poetry



"a greatness beyond all possibility of calculation, measurement or imitation"



Purchases of this book go to support Eric's care of his son Segev.

Preferred purchase link is https://www.createspace.com/4652145

but the book is available on Amazon as well.


I've been following Eric Fischer's blog about his beautiful and profoundly disabled son Segev for several years. Segev has a condition known as Ohtahara Syndrome, which is a progressive disease involving seizures that often don't respond very well to medication. Eric has spent the last sixteen years taking care of his son, who requires 24 hour support.

Over the last nineteen years, Eric has amassed a collection of poetry that is, with no exaggeration, sublime. I have his first volumeLittle Job's Book of Broken Poems, on my kindle, and I've found it meaningful and often come back to it when I need to know I am not alone, that others, too, see the wonder and pain of this world entwined. I am always led to think and feel when I read Eric's poetry and it never fails to create a feeling of bittersweetness that I carry with me long after I've set aside the poems.

Eric's dedication to Segev and commitment to honoring his son and other children who live with profound, severe disability is punctuated with loss and struggle and exhaustion. In one poem, "The Tender Heart," Eric writes that 
A tender heart may lose its way,
With resolve returns to win the day.
Falling down, feeling broken, these things are to be expected, are unavoidable consequences when one battles each day for another day for one's beloved.

It is not just the tender heart, but also the foolish heart that plays a role in being able to keep going, long day after longer night, weary.
Despite adversity into the fray:
A foolish heart will see the light of day.
Eric knows all too well what he's fighting for and what the cost is, and his dedication to his son and to making the world recognize the value that is inherent in all people, regardless of functionality is heroic, although he would likely reject that characterization. He is, in his opinion, doing what he must.

In a poem about Segev, he writes:
The rope that binds his body cannot bind his soul:
The secret of the heavens that define this role,
Never has a dream garnered such a toll.
He continues later in the same poem, "Darkness,"

The struggle to survive
Universal and constant
Where no one is asked 
Whether they can bare it nor
Want it.
 Life and death and the things that really matter: Eric's life is wittled down to the essential, as are the lives of other parents loving and fighting for their children and their children's lives. Eric writes in a poem titled "Ohtahara,"
Death is in the fight.
...
Brought to our knees
With aches of love for our children so affected,
Death is a rampant disease.
Eric writes not just about his and Segev's experiences, but also devotes several poems to other children and their families and tackles the heartrending task of the loss of other children to the diseases they and their parents valiantly wrestled with. Of Jack, in "Brave," Eric writes,
Brave brave, little thing,
Across the heavens you will sing.
 Eric's poetry calls us to feel, to think, to be, to embrace the moment. I can't help but be reminded of Nancy Mairs, a poet and author who has MS, and her interview in PBS's documentary,  & Thou Shalt Honor,   how she feels called to life:

And having George participate in my care and having other people do the same, calls me into life. It says, despite your losses, despite your limitations, you belong here with us and we want you to stay. We want you to stay enough that we're willing to participate in the labor that it takes. That's perhaps the fundamental of caregiving -- to enable another to want to be in the world. Not just enable them to be, but to enable them to want to be in the world when it would be easier not to.

 Eric's message, in the end, is similar--he calls his son to life, he asserts the inherent value in all people, regardless of what they can "contribute." He rejects any and all idea of allowing his son to go gently into that good night.

I am honored to be Eric's friend, to be allowed to bear witness to Segev's beautiful life and Eric's passion for giving Segev the best life he can for as long as he can. I encourage you, if you have not had the honor of meeting Eric and Segev, to visit Eric's blog and Segev's facebook page, and to participate in Segev's support by purchasing I am a broken man/You can't break me.

--K Wombles

Monday, April 28, 2014

No Consensus to be had: Recognizing Compassion is not Condoning

In September last year, we were horrified when a member of our community tried to kill her daughter and herself. Friendships were ended over the divide in how to handle the situation. I lost a person I considered a close friend over what I still believe was a miscommunication rather than a real difference of opinion.

This last week a Canadian single mother of a severely autistic teenage son killed her son and herself and once again the community erupted and people find themselves on opposing sides.

Part of this is truly a difference of opinion. There are those of us who are horrified at how the victim in this kind of crime is portrayed as the perpetrator of the murder rather than the murder victim.  That, should, I think, be the way we react instinctively: the victim is the autistic person who has been murdered. No matter what the reasoning behind the parent's actions, the primary victim is the autistic individual who has been murdered.

The lead in the news coverage is that a disabled individual has been murdered by his/her parent, not how hard the parent had it.

After that acknowledgement, in a separate conversation it is reasonable to wonder what drove the parent to the point of murder and whether there are actions the community could take to safeguard vulnerable individuals. What is an appropriate level of governmental intrusion into the lives of families? Would that have made a difference?

Why did this mother do this? Why didn't the medical community help? Why didn't the Canadian equivalent of CPS assist?

The list of why questions are endless, and the reality is there aren't answers for all of them.

What is the solution for families unable to provide safe living spaces for their disabled children? Turning them over to the state? Relinquishing their parental rights? Should they have to do that to get their child help?

Why aren't there enough resources for families and adults who are disabled?

The one clear answer is that there should never ever be a time where we condone the murder of a disabled child by a caregiver. That action is never understandable, always reprehensible.

Condoning an act of evil and having compassion for people breaking under what they find to be insurmountable situations are not the same thing, though.

We can feel compassion that this mother was turned away time after time. We can feel for her that the state, the community, and her family failed to assist her or to see the level of despair she was operating under. We should, I hope, feel even greater compassion for her son, the child she made a choice to murder before ending her own life.

He was failed all the way around, by every one. He was the one deemed not worth helping.

Compassion for autistic individuals in maladaptive or dangerous environments that don't meet their needs and routinely fail them--that ought to be the number one concern--we must care before we can act. We must deem autistic children and adults to be of equal value to non-disabled individuals. And then we must advocate for adequate resources and assistance for these individuals so that they are safe and in an environment that they can thrive. That means assisting families.

Compassion for families who don't know where to turn and face closed doors every time they reach out should be the secondary concern. These two concerns work in tandem and we need to recognize that.

The solutions for families struggling to access resources to assist their disabled family member is going to be family-specific. It will look different for each individual. We cannot afford cookie-cutter solutions, and the ongoing debates in the online community tend to detract from any real action occurring.

How do we move from advocating to action?

Where do we start?

Calling on the media to remember who the true victim is in a murder/suicide is an action that must occur.

Calling on the state and local organizations and the medical community to make sure adequate assistance and resources are available is necessary.

Helping families in need by being there to listen, to provide respite care, to put your money where your mouth is are all needed actions.

We must build local cooperatives in our local communities, create strong ties between families and communities so that when a family is in crisis, it isn't happening out of sight.

Investment in each other and commitment to being there for each other goes a long way, as those of us who have had the benefit of having a circle of friends who have our backs know all too well.

As we work to create real change in the real world, we can also resolve to treat each other with compassion, to listen to each other and to be willing to ask for clarification before we decide we've hit that wall that terminates what had been a supportive relationship.

I don't know about you, but I certainly don't have so many friends that I want to lose a source of support and solidarity over a misunderstanding.  Let us have compassion for each other and understanding that these tragedies are horrible for the families they happen to, but also to us, as well.

--Kim Wombles
*Please know that this post reflects my opinion alone. If you would like to submit a post on this topic, please email me.

Friday, April 11, 2014

Inclusion means everyone-or when special isn't special...an open letter to Special Olympics Maine



Cross posted from autismherd. Please share! 
contact info is Phil Geelhoed   PhilG@somaine.org
  To whom it may concern-or Hey Person who picked the venue for today's state swim meet!

 
I sat at the special Olympics today. It should have been wonderful.  It is not often that people with disabilities (either physical or developmental) are able to get together without judgement to participate in sporting events.

But it wasn't wonderful. I sat there and quietly seethed because I knew of at least one individual who worked equally as hard-but was unable to participate. This was not through any fault of their own-it was simply because the chosen venue had no hoist to help them into the pool. Imagine that-a "Special" Olympian excluded because of the very thing that made them "Special". Equally as unthinkable-a Special Olympics venue that was not fullyhandicap accessible! It boggles the mind.

Yes, there were people who were eager to help-"We'll hoist them in and out of the the pool ourselves-whatever it takes!" To add fuel to the fire-there were no accessible changing rooms for this person."Oh we'll let you use an open area and stand around them holding up towels." While I am sure that these were well intended suggestions, that there was no malice-I am equally sure there wasn't any real thought behind them either..This is a human being. Someone with thoughts, feelings, a personality. A person  deserving of dignity and respect. Someone who wanted their moment to shine-not for the spectacle of being hauled into a pool by strangers-or made to change behind a shield of towels-but because they were an athlete-a participant. Accepted and Included.

  Oh sure, I heard the excuses-when someone complained about this athlete being excluded, they were told- "You find a venue big enough to hold everybody!"  That doesn't  make sense. Really- what is more important?  A venue big enough to hold all the athletes or a venue that accommodates all the athletes? Had people known there was an accommodation issue(meaning  more than two days before the event) maybe they could have found a way to rent a hoist-or fund raised to buy one. Maybe a smaller more accessible venue (spread the event over two days) could have been used. Who knows what could have been done.  I do know however, what should have.

  I thought about this as I sat there today-watching all of the happy faces-seeing the pride in accomplishment, the joy in success. I sat and thought about the person who wasn't there-who didn't get their moment and wondered how left out they were feeling.  I looked around and saw all of the bright yellow Special Olympic tee-shirts - emblazoned with "Inclusion" "Friendship" "Unity" "Respect" -all such lovely sentiments. I tried to measure those sentiments against the person who wasn't included...and sadly realized that today- they were just words. .

  That athlete (and any others that may have missed out today) is owed a big apology. Accessibility, accommodation and inclusion-especially in the Special Olympics, should NEVER be an issue.Nor should they only be words on a tee shirt. This was unacceptable.

  As the mother of a "Special Olympian" and of other children with disabilities, I have heard far to many times about why my kids can not be included in some things. I can't tell you how much I loathe the sentiment "The needs of the many outweigh those of the few" I did not however expect that attitude to bleed in to the Special Olympics. I am appalled.

Sincerely,
Kathleen Leopold
Richmond, Maine
Kathomar@aol.com

Saturday, March 29, 2014

15, autistic and wary of awareness...


 ~"These are the things that require neither signs nor       labels. Churches, coffins, and urinals all proclaim,
This is what I am.
No questions asked."
~ Andrew Smith~Grasshopper Jungle




(cross posted from www.autismherd.blogspot.com) 

  Autism awareness month is about to rear it's weird head..and I have been wondering (after five plus years of blogging)- what more I could say about it. By this point everyone is aware-so, now what? Really? What does awareness mean or do anyway?  This past week-I have learned what it means to my Sam.(I didn't even know that he was paying attention..*sigh*) He is fifteen, autistic..and one of the best people that I know.  He doesn't like the "lighting it up blue" or the puzzle piece symbolism.  In one conversation, he equated all of that with Nazi Germany-telling me that he felt as if he were being marked much like the yellow star or pink triangles from then. He makes a lot of sense-and, being autistic-he has even more of a say in what this month represents to him than most other people. The following (in red) are his words-his thoughts.  the drawing is his as well...So, without further ado-I'm going to kick off this whole awareness month with the thoughts of my son. These are his words.


This month always separates us into two groups-the "afraid" and the "feared".  The afraid, not knowing what autism is- create hate (or the opportunity to abuse) making the "feared"(autistic peoples) lives miserable. The people trying to "help" are filled with pride which makes them feel special.  They always talk about the problems, what "they" can not do and NOT what they CAN do.Making not only themselves blind..but even some autistic people as well- especially when they try and embrace this blindness. They blind potential.  Another part of this parade of abuse...this march of madness..makes siblings who don't have autism look like their lives are miserable. But, the saddest part of this is that a lot of people are too blind to see the truth.  Please end the madness.


Friday, February 7, 2014

Scott Levine's New Poetry and Podcast Interview

Acceptance of Autism 
Wanting to be free
Wanting to be me
Trying to make people see
And accept the real me

Some people think my voice is too loud
And that my mannerisms strike them as being odd
This perception of me by others keeps me feeling blue
But there are plenty of struggles in life that I must get through

I am determined to show my critics my true personality
Hoping that people move away from their narrow-minded mentalities
I want them to know that I am a bright young man
Who is willing to take on as many challenges in life as I can

I want to make new friends and create a new start
I like to develop new relationships with an open heart
I hope to be accepted for the person that I am
So people can understand a true autistic man


Fall in New England

Fall is such a beautiful time of year
There are plenty of sites to see here
Leaves with bright colors orange, yellow, and red
Signaling a change that the year is near the end


But fall is also a time of new beginnings
It is a time to start to learn new things
A time to look at the world in a different way
A time to learn new strategies to handle each day

Let’s take this time of change  
And focus on new ways to think
Let’s give individuals with challenges a new look and rearrange
And find a common link

Fall reminds us to turn over new leaves
To think about starting new goals to achieve
I call on the world to change perceptions
And give all of us a new reception
I want to make new friends and create a new start
I like to develop new relationships with an open heart
I hope to be accepted for the person that I am
So people can understand a true autistic man


Saturday, January 25, 2014

Not Okay: Autism Speaks Owes Kassiane Sibley More Than a Public Apology

by Kim Wombles


The number one search term for Kassiane Sibley and Autism Speaks is a pdf file that was supposed to be removed, was removed in 2012 after the autism community lit up in justified anger that a major non-profit was violating copyright as well as the author's wishes.

Whiting it out while leaving the text in the file so it would still get hits was an offensive move. Restoring the original whitewashing with a new url sometime in 2013 (according to Alyssa) is nothing short of a dick move.

Despite deep reservations about the organization, for a short time I tried to work with it in my city, since at the time they were the only way autism families got to meet each other. I felt the former president, who I had met and talked to, genuinely listened and wanted to improve the organization. I knew the people in my city who worked on the walk were genuine, real, and invested in making autistic individuals feel welcome as they were and in providing support for them and their families.

I was able to live with the cognitive dissonance for two walks. I felt the volunteering done by my family and students to make the walk happen was good work for the local community and I gained many friends in the process. I also saw some things at the paid worker level and in the organization itself that troubled me deeply. It was all about raising the most amount of money with the least amount of help from the larger organization. It was push, push, push.

I also witnessed a failure to recognize the families' concerns and interests.

I walked away from the organization quietly and when I finally did publicly announce I couldn't support it, people who had treated me like a traitor wanted to welcome me back like I'd just suddenly seen the light.

I don't like agendas nor people whose interactions with others arise out of their agenda.

I came online looking for community, for my tribe, for people who would understand my kids and me. And I was very blessed to find numerous kindred spirits, people who have become my closest friends and my strongest supporters. I found controversy and hate along the way, which I have no interest in, and it's amazing when you don't want to incite rioting and vitriol how much more supportive the people in your life are.

I know that there's a true autism community online and in the real world as I experience it every single day of my life. My facebook friends are autistic individuals, parents, the whole gamut, and with a diversity of beliefs, but the one thing we share in common is our desire to be there for each other in the good and bad times and in all the in-between.

We have thousands of people represented on this directory, from those who despise Autism Speaks to those who still support it. And I wouldn't dream of going on any of their pages and deriding them. I'm here to support at the individual and family level.

What you will no longer find on this website, though, is any link to Autism Speaks.


Over the years, their actions have varied from somewhat hopeful to downright evil. Some of their rhetoric approaches, if not reaches, hate speech. They incite fear of autistic people, and they make families think that their lives with their autistic children are doomed.

Raising autistic children, much like raising children, is not easy, but it is an amazing experience, even when it is a difficult, painful experience as our hearts break for our children's struggles.

I love my autistic children and my BAPpy husband and extended family, and I also happen to love my BAPpy self. I didn't meet people like me till I found the autism community. They made me realize I wasn't alone and that there were plenty of people who got me, got my obsessive interests, even appreciated them.

Kassiane wrote a lovely post in November that I recommend highly, that is by far the best response to Suzanne Wright's horrible op-ed.


Autism Speaks, you owe her more than a public apology for profiting off of her work without her permission, for disrespecting her as a published author with the right to say no to having her work appropriated without permission, despite making it clear she wanted her work and her name nowhere near your stuff.

You owe autistic people an apology for making them into caricatures to profit off of.


Thursday, January 23, 2014

Putting Our Money Where Our Priorities Are: Our Children Deserve Better

"Good teachers are to education what education is to all other professions—the indispensable element, the sunlight and oxygen, the foundation on which everything else is built." --Lowell Milken

This is especially true when it comes to teachers for children with disabilities like autism, ADHD, and dyslexia, among other common learning and/or neurological disorders. I wouldn't be surprised if most if not all parents of special needs students haven't run up against teachers whose education was inadequate to the task, especially when are children are mainstreamed with regular education teachers. Even the National Council on Teacher Quality notes that "To ensure that our children receive a world-class education, their teachers need to be world-class. Sixty years of research and the experience of nations whose students outperform our own have proven that we can only achieve this goal by raising the bar of admission to teacher preparation programs."

According to the US Department of Labor, "[s]pecial education teachers in public schools are required to have a bachelor’s degree and a state-issued certification or license. Teachers in private schools also need a bachelor’s degree, but may not be required to have a state license or certification." Is a bachelor's degree really adequate? Even for regular education teachers? 

How much training do teachers receive for teaching? At the secondary level, education courses generally begin in earnest during the junior year, and the average semester hours needed for secondary education certification are 30 hours or around 11 courses varying from 1, 2 to 3 semester hours. The average teacher has had one 1 hour course on exceptional needs student. 

Teaching children, readying them for the future, is too important to rely on bachelor's degrees where they only spend one short class on exceptional needs students, especially given the reality that 13.1% of U.S. students are disabled.

According  to Martha L. Minnow,  "[p]roviding better training, support, and satisfaction for teachers is critical to improving both special education services and education for all students. Allocating funds to training programs, salaries, and class size reduction will help; shifting paradigms of instruction to provide continuity within the classroom for students as well as teachers will do as much."

It is imperative for our children's futures that the local, state, and federal levels of government recognize that competence in both our students and teachers requires the commitment of funds for research into best practices, to increasing teacher and staff pay and training, and to giving all students the individualized attention they need in order to succeed.


Thursday, January 9, 2014

Pass it on..

  I don't know how many of our readers know about The Autism Channel-a channel devoted to all things autism. It is a FREE streaming channel that has over 27000 viewers. The line up of shows is excellent and inclusive.  Many of the shows are hosted by people on the spectrum. That's pretty wonderful-especially in a world where the voices of autistic people are often overlooked.

Right now, they are asking for help on Indiegogo. Please click on the link and learn all about the channel, the shows, the producers and what they are trying to accomplish. If you can help out-wonderful. You could also take a moment to share the Indiegogo post! You can go on over the their Facebook page-scroll down and catch the latest episode of the Autism World News.   Please just take a moment to look-and if you like what you see, spread the word, share this information.. Thanks.




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