She went to college, but she failed to do daily things, like eat, or laundry, and even most of the time homework. She suffered a lot, from stress that caused great migraines and bouts of sleeping. She met people she finally understood, but by that point it was too late and there was little she could do to regain her stepping.

She found herself pregnant, homeless and in a bad relationship. She gave up on finding her footing and moved back with her parents who were also hopelessly lost.

She met a man half the country away. This man fell in love with this now pregnant young woman who had failed in her relationship, in her studies and generally at life. He woo’d her, despite the fact that she didn’t know he did. And when all else failed, told her of his love for her.

After meeting for the first time, in person, only weeks before this young woman gave birth to her son, they both knew they wanted to see if they could have a life together. That man moved half a country away to be with this woman and her son. But soon he lost his own way, unable to find work, he decided to move back home, and so risking all, the woman moved back with him.

Now nearly 8 years later, this mother to two, this Autistic person, knows that sometimes in life you must risk things to gain so much more. But that does not mean things have been easy.

—-

This week, my husband and I celebrate our 7th wedding anniversary. If it weren’t for him, I doubt I would have ever found my way. And I thank him deeply for all he has done for me and our children.

Tony Attwood has rarely been a good proponent of Autistic adults being in relationships with his giving credence to the “Cassandra Phenomenon”. Or by his distinctive choice to not leave the FAAAS advisory board. Or many of the other things that have been said about us in relationships.

However, in the link that was shared today on my Facebook stream, Attwood has done something that damages not just Autistic adults in relationships, but in parent roles, especially the men among us.

Oo-oh. Yes, Al.
(question by Al was whether children could exhibit AS if their parents are AS, but not have AS themselves.)
You’re spot on there.

Um.. Asperger’s Syndrome is infectious. The more you live with or work with Aspie people, the more Aspie you become. *chuckles*
So… to a certain extent in the family, it’s a survival mechanism of the neurotypicals. ’cause quite often the Asperger’s characteristics, especially in a father, can be the dominant force in the family. And sometimes you have to fall into line and you have to adopt the same pattern of less social life, rigidities, and those sorts of things to survive. Now, what we find is, though, that when the children go and visit other families with their friends, um, they say, “Wow. This family is totally different. There is a different atmosphere. There is a very different routine. I feel quite comfortable here.”

That is something I did in my childhood, um, I would visit other families and my mother would say “Anthony, you’ll wear your welcome.” And I didn’t know because I wanted to be in a normal family.

So, um, in some ways, I think what you have is someone who can be different and true to their neurotypical self at school and, um, at other people’s homes. But when they go into the Aspie household, they almost put the Aspie mask on to succeed in that environment.

So we talk about those with Asperger’s Syndrome faking it in a way and putting on a mask. Then the children in that environment may also do the same to be able to create an atmosphere at home of cohesion to accommodate the Aspie characteristics. So very interesting question.

I’m sure that I don’t need to add anything here, but I will anyways. The idea that it’s a survival skill for children of Autistic parents to “act Aspie” is a poor characterization at best. Children will undoubtedly pick up characeterstics from their parents by nature. However, using the term SURVIVAL SKILL means that they cannot survive without picking up those characteristics.

Not to mention, it’s quite possible to have many of those characteristics innate in the child of an Autistic parent due solely on genetics. It works in reverse as well, or else you wouldn’t have Broad Autism Phenotype for parents who exhibit some traits but are not Autistic themselves.

Also to note, a lot of children crave to be at others home not because of having an abnormal household, but due to the fact that it is something different from their norm. My dad was an alcoholic, so I often preferred to be at someone else’s home. HOWEVER, the same can be said of friends of mine, my brother and sister who lived in typical households and came over to ours.

And while my quote from above can be taken in many different directions, and not even necessarily to how it was used, the fact remains that Mr. Attwood chose to use that statement and others to suggest that our “behaviors” rub off on others.

I can think of other ways that this is damaging, but I’d be able to go on for hours if I were to post all of them. Please feel free to comment. (And always remember, I reserve the right not to post your comments if I feel they are inflammatory due to this being a safe environment for those of us who live with these fallacies daily.)

***If you catch a mistake in my transcription, I do apologize, just let me know!

——————-

Call for Papers for a Special Issue of Narrative Inquiry in Bioethics: Narrative Symposium: Parenting Children with Autism Spectrum Disorders During the Transition to Adulthood

Narrative Inquiry in Bioethics

A Journal of Qualitative Research

Edited by Kelly Dineen, JD, RN & Margaret Bultas, PhD, RN, CPNPPC

Narrative Inquiry in Bioethics will publish an issue devoted to personal stories of parenting children with Autism Spectrum Disorders (ASDs) during the transition to adulthood. The stories should give readers a sense of what parents find rewarding as well as challenging during this time. Stories about any aspect of the transition are welcome, ranging from navigating the health system to romantic relationships. We want your true, personal stories in a form that is interesting and easy to read. In writing your story, you might want to think about:

• How did available supports or services change during the transition period to adulthood?
• Do you think the transition to adulthood has been affected by your child’s level of functioning or other health problems?
• What do you or your child disclose to others about their disability?
• What advice would you give to parents of younger children with ASDs about the transition?
• Did you obtain formal decision making authority (e.g. guardianship, conservatorship, power of attorney) for your child when they turned 18? Why or why not?
• What are the most surprising issues you encounter now?
• What do you think is important to share with others about the transition to adulthood for individuals with ASDs and their parents?

You do not need to address these questions-write on the issues that you think are most important to share with others. You do not need to be a writer, just tell your story in your own words. We plan to publish 10 to 12 brief stories (800 – 2000 words) on this topic. Additional stories may be published as online‐only supplemental material. We also publish two commentary articles that discuss the stories in the journal.

If you are interested in submitting a story, we ask you first to submit a 300‐word proposal-a short description of the story you want to tell. Please include a statement about 1) your relationship to your child or children (mother, father, other parenting role), 2) your child’s diagnosis (e.g. PDD‐NOS, Autism, Asperger Disorder), 3) the age of your child now and the age at diagnosis or treatment for symptoms, 4) the main issues you propose to address.

Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com.

We will give preference to story proposals received by Jan 2nd, 2012.

For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage with Johns Hopkins University Press at:

http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/guidelines.html

Every issue of Narrative Inquiry in Bioethics will be available electronically to over 1,000 institutional subscribers via ProjectMUSE.

——-

This is a conglomeration of thought based on several things I have read and conversations I’ve had recently, and quite honestly, for the past few years. Kassiane‘s blog post was repeated on TPGA and speaks about self-advocacy and autonomy even at a young age. Laurent Mottron’s commentary in Nature has been widely circulated with a quote from Dr. Mottron stating

As a clinician, I also know all too well that autism is a disability that can make daily activities difficult. One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

**bold emphasis is my addition

A recent conversation with a person discussing ASANs Navigating College handbook lead to talking about how to get something similar going for parents to help their child be more independent in preparation for transition. Then there are my continual lingering thoughts about nonPariel, which in my opinion is nothing more than a day hab, sheltered workshop with plans to include an onsite group home/institution for those considered by those who created it to be “high functioning.” If you’re wondering what all of these have in common, prepare to be enlightened.

First I will start with the statistics that Dr. Mottron said. 80% of all Autistic people are still dependent on their parents. I’m sad to say, I’ve got anecdotal evidence of the same.

Then on to nonPareil which was created by parents who were worried about their children’s futures. They don’t expect them to have hopes for independence so started a program directed to where they will be at transition age.

Next is the discussion about a guide for parents to help create independence. So many parents realize their 17 yr old is about to be 18, and adult and they scamper to find what they can do to help their child. This is a discussion I’ve had with more than one person over several years.

Last is Kassiane’s blog post about showing autonomy to a young boy 9-10 yrs old. How he was never shown that, which is not that uncommon.

I worked for a company into this April where preteens and teens with “HFA and AS” got together for social activities twice a month. So many times, parents said their children couldn’t be trusted to help cook. One boy even hit himself in the face when he was upset with himself and people let him use that it was a part of his condition.

What is this all getting to? Are you a parent that is helping your child be independent or are you standing in their way? If your child is in middle or high school, are they allowed to make mistakes like their peers are? If your child is in elementary school, are your children allowed to make any of their own food?

Do your children have responsibilities that they must do? And how about entrusting them with money? If your child is young, does he have to put the dishes in the dishwasher? If your child is older, does he know how to do his own laundry?

These are all life skills that really build onto each other. So when I hear a parent has waited until their child is 15, 16, 17 to ask “What does my child need for transition?” I always think that the parent has already waited too long. When parents say their child can’t do something, I always ask why. If it’s maturity, then what are you doing to increase his/her maturity?

Like I’ve said before, we use ChorePad HD to help with all sorts of skills. But it doesn’t serve just as a reward system. There’s saving and practicing and growth to learn new things. Daniel, who most would think couldn’t grasp the delayed-reward system, does.

So why not try it with your child? Even if you don’t have an iPad, you can go pick up tickets at the dollar store (Dollar Tree has some). Like those older carnival style tickets. And you get to give tickets for things you want to praise, and remove (if your child is ready) for things that were harmful or disrespectful. It’s the same idea. They can save up to something large while still spending for small things, like 30 min on games/the computer. (A good way to recoup those tickets is adding a goal of “No protest getting off electronics which teaches another skill. And make sure you have a timer that they can read!)

If this sounds preachy, I apologize. But part of having a self-advocating, autonomous adult is allowing them to make their own mistakes, teaching them skills to increase their independence and allowing them to make their own decisions.

Despite being 5 minutes apart, the schools are no more alike than an apple vs. an orange. Sure, they are both still public schools in the same district, but that’s where the similarities end. The first days left Daniel without an aide, left Stephen over-medicated and left me confused about what was going on due to lack of communication.

Daniel: Without an aide, because we were not explicit enough in his IEP. It says “Close Adult Supervision” at all times. It also says 1:1, 1:3 and 1:6 for most instruction time. But this did not translate together as “1:1 aide at all times”. This is where the lack of communication left me unable to know it was happening until his team lead said “We’re going to try to put an aide with him at the end of the day.”

Stephen: Over-medicated, because it’s a patch, it releases medication the same throughout the day, except when it’s hot. The new school doesn’t have the lovely new air conditioning system that the old school has (probably because the old one was only built ~13 yrs ago). So with 100+ temperatures each day since school started, it was warm inside the building. This means that his patch was releasing too much medication. It was what we call at home “Zombephen”. The teacher thought he was acting very well in class because he was staying in his seat and being quiet. Luckily I went in for lunch the first day and saw my Zombephen and now we know.

Me: Lack of communication is a huge problem. I’m not getting reports home for either boy. I’m barely able to tell whether or not they’ve eaten lunch. And I still don’t know if Daniel has a 1:1, though, I suspect he does as the same aide picks him up at the door in the morning and brings him out to me in the afternoon.

My solution: Parent-teacher conferences! I have one today at noon. I have one on Monday at 1. And Thursday I will be meeting with the teams as the boys have triennials this year. Hopefully all will be resolved through all of these. But until they are done, I really can’t say for certain. All I know is I rather hope that I don’t find out any majorly disappointing surprises.

At his school, all students earn school money that gets to be redeemed at the end of the week for toys, gifts or certificates. All year, Daniel has struggled to have enough to get a certificate, but two weeks ago, the school store marked them down to $20(s). He had enough so I asked him if he wanted to get one. In the end, he got “Reading to Another Class”. As is historic with kids in 1st grade, they chose to go back and read to their Kinder teacher’s class. This class happens to be Daniel’s little brother Stephen’s class so it worked out quite well.

Friday was the day he got to read to the class. He and I sat down with his iPad the week prior to decide which book to read and it was decided on “Green Eggs and Ham” by Dr. Seuss (Thanks to Ocean House Media!). We got into the classroom, and he sat down in the teacher’s chair. He very softly said to his K teacher and his aide “Ready?”. So softly in fact, that I could barely hear him standing right next to him. He was nervous, but he started the app. Then he turned to me and said “Read to me?”

You see Green Eggs and Ham along with the other books produced by Ocean House and many other eBooks have the option of the story being read to you rather than you reading it yourself. This works out great for Daniel, especially in this case.

I nodded and he started the book. We got the volume turned up so everyone could hear and off he went. He swiped the pages and he did hand movements. He showed everyone the cat and he asked if they heard the splash. He laughed in several parts. He was so excited as he left. He really did an excellent job. He stayed in the chair, and he left the book pointing outward for everyone to see.

I stayed after for a few minutes because there were several “Huh?” looks on the kids’ faces. I explained Daniel’s Autism makes him think differently so some things that are easy for them are hard for him, and visa versa. And they all seemed to understand. As much as a Kinder kid can understand at least.

I left so excited and so proud. He really did a fabulous job even if he didn’t read it himself, he was able to share with another class. I think it will be one of the most enriching experiences those kids will have for a while.

When I speak of my Autistic children, please know I understand them very well because I’ve been diagnosed myself.

When I speak of the current state of things, please know I am happy with my life and my children, but know there’s already room for improvement.

I love that you are interested in what is going on in my life. It’s been a long time since many of us have spoken. Our lives diverged and this little thing we call the internet has connected them once again. It seems we now have something in common. You may teach in a Special Education classroom. You may be a Speech, Occupational or Physical Therapist. Maybe you are just in education. Whatever  it is, it’s amazing to see how our worlds collide once again. But this time, we are not peers or relatives, we are on opposite sides of the same quest. To make life for those with Special Needs fulfilling, independent and happy.

This doesn’t mean we’re fighting against each other.

It means we have two unique perspectives.

Would you like to reconnect?

I know I can always use more friends, but what I know more is my children need more allies. More people who understand and accept them as they are. You once accepted me for who I was. Many of you even helped build me up. You supported me through school with your friendship and kindness and faith in me. You supported me when I had my ups and downs and I became the person I am today because you were around.

I’m here if you have any questions.

As I’m sure most are aware, Daniel got his iPad for Christmas. Since then, he’s taken it every day to school. He uses it for his daily schedule, is token board and now for his social stories. It has allowed me to stay after school for Stephen’s extracurricular activities and know Daniel has something to stay occupied. We put Finding Nemo on it, so that works especially well.

He has started actively requesting me to download new stories via Read Me Stories. It’s an eBook app that allows a new eBook to be downloaded daily. Some of the stories he’s not all that interested in, but loves many of the others. We often catch him in the morning before school doing his math addition game.

He has also really fallen in love with YouTube. As his spelling gets better, he looks up and watches more videos. He also found a fish tank app where he can buy new fish and decorations. Then his games, which he has been GREAT at not playing while at school. It’s one of his two rules that he can recite, “No movies. No games.”

He also has been able to show his classmates a few things on it. They are of course fascinated by the fact that Daniel has an iPad, but they ask him questions and he answers. While I don’t think it’s made him any more friends, it has really opened up his communication with his classmates. It’s amazing what a simple device can do.

Next up is to buy him an iPad pen so he can start working on his writing skills. As nice as the writing programs are, they just don’t translate to the fine motor delay without the use of a pen. We gave one of the two USB dongles to the school for easy transfer of pictures, and kept the SD card one for ourselves. I’m just so glad they are willing to use it!

To find out more about Daniel and his iPad as well as Shannon Rosa’s son’s progress. Catch us tomorrow!

iReward

When we first looked at the iPad option, I thought without a doubt that iEarnedThat was going to be our token board. I loved that it had puzzle pieces, ended up showing the reward, and had the ability to use it for multiple kiddos if needed. (You never know with two Autistic boys in the house!) What a shock when I bought it, added all the pictures of his rewards at school first, and showed it to his teachers. I couldn’t undo. You had to completely delete the goal and remake it each time you wanted him to work for that reward. I was devastated.

I had seen iReward, and while the only real difference I had seen in it and iEarnedThat was a price, and the neato ending with your completed prize, I had really dismissed it. How wrong I was!

This app may not be a spiffy looking, but it does many things with ease. First, it works excellent as your typical token board! At school, they’ve always used a little board with velcro’d pennies and laminated pictures for the reward. Quite honestly, this app is exactly that! Except, instead of pennies, there are stars, or smilies, or check marks. You can reset the rewards so it’s not one time use. This is great for ‘our kids’. The rewards are displayed with an image of your choice (so yes, you can add your own photos!).

It’s made it really easy to help him earn his rewards. It keeps track of the stars, so you don’t have to keep it open the whole time. And Daniel loves to click his stars (he prefers the red stars) once he’s completed his tasks. It was seamless change from lo-tech token board to this. I highly recommend it for those looking to replace their lo-tech solutions. It is available on iPhone, iPod Touch, and iPad. Grembe, the company that produces iReward, also has several other apps. They also seem to be taking baby steps to developing for Android. One only hopes that iReward will be ported over for Android users!

Grembe’s iReward Demo:

http://www.youtube.com/watch?v=puhaMG7NQzA

I will be meeting with his Special Ed team lead as well as his instructional aide to train them how to use it throughout his day. As soon as they have a form to remove liability to the school, he will be able to start taking it to school. Within the next few weeks, we will be adding Stories2Learn and I will train his Speech-Language Pathologist at school on how to create those.

Daniel has used his iPad daily, even out and about. We did run into an unforeseen issue when his internet connection dropped out unexpectedly, resulting in a meltdown.  But we all know that inspite of it being a game changer, it does not mean the iPad is fool proof for all situations. I will be working on getting a few movies converted to watch on the iPad so we won’t run into that problem again.

I will update again after the training session on Friday. For now, thanks to all who have helped. If you’d like to continue to support iHelp Special Needs get iPads in the hands of Disabled children, please visit their website. All Apps linked above also credit their company. If you’re a parent of a Special Needs child, iHelp also has a giveaway for an iPod Touch 3G (previous version). I can’t thank Jennifer enough for all the work she put into helping us get the iPad, especially in time for Christmas!

http://www.youtube.com/watch?v=ylw2SLRlD4I