The morning started out with the keynote address by President Obama staff. I was very enthused by the fact that Mr. Lee Grossman, president of ASA, wants to reframe perspective from just medical issues with Autism, but to a whole life, whole person approach. What did not leave me nearly as enthused was the actual keynotes. I was upset by the generalities with no real precision on what the plan is for those of us living with AS. With a mental health system that’s not equipped to handle us rampant throughout the US, housing issues, along with job issues. You’d think some more concrete plans were being laid. Instead, it just showed how ill-equipped this presidency is to help our population. I wish I could work, I really do, but as of now, I can’t and a lot of it has to do with poor social services plans.

I made my “escape” early from the keynotes, when they started asking questions. The poor acoustics plus the frigid air left me in utter pain. Luckily, earplugs handed out during the workshop the day before kept me in there for that long. I’m really glad that by Day 3 they had most of these acoustic issues worked out, but the air stayed frigid throughout the conference. Shortly after the key notes, I found my way to some comfy chairs. I received a tweet from Alex Plank, creator of Wrong Planet and keynote presenter of Day 4, saying to call him. He was doing interviews, but I sadly never got around to giving one. I also met Lindsey Nebeker, who has just opened up her blog Naked Brain Ink which talks about relationships for those on the Spectrum. Along with Jack Robison, John Elder Robison’s son, and Autism Talk TV representative, Alex, and Lindsey, I sat in the lobby and chatted as 4 Autistic people do. I think we may have looked odd to the ‘outsiders’ as one lady got up and walked away at the congregation started. Lindsey did a really awesome interview for Autism Talk TV with Alex. I was particularly amazed at her presentation as she looks quite suave.

Following the 3 hour discussion between the three of us, it was off to view panels I had highly anticipated for the month following up to the conference. First stop was with “Anxiety, Depression, Post-Traumatic Stress: The Effects of Bullying on Individuals with ASDs”. I knew going in that I was not their target audience. Having experienced Bullying and abuse from those in my life, I was very pleased with the way they presented it for teachers and therapists who had not thought about it. I think they did leave out a few things, such as bullying from siblings and parents. Things such as bullying from teachers, which my brother suffered, to where it’s difficult to come forward with the abuse. From other students, but not realizing it for years later. I suffered from this kind of bullying. Being naive and innocent, it does not help when you look back on your life. Ignorance is not bliss, and I think they made that pretty clear. Many of the strategies that I am doing with my therapist were the same that they gave example to. Cognitive Behavioral Therapy, which means so many things, is definitely the psychotherapy of choice that I will continue to use, and if ever needs be, I will have my boys do.

Unintentionally after that panel, I walked around the Exhibition Hall for 2.5 hrs. Like I said, unintentionally, it was however worthwhile. I made a lot of great contacts and got lots of information for pet projects that I’m contemplating. One company, gave me information on creating boundless and sensory playgrounds, which is something within the next few years I really want to do. I spoke with the Director of Programs of ASA for quite some time and some of her pet projects would be incredible for the adult community. I really hope that the rest of the board will some day hear those ideas and pick them up. I will not go in depth for obvious reasons that they are not even on the playing field yet.

Many of the companies that publish books were there. I really wanted to approach one, but did not. So I listened. I was very happy to see Bittersweet Farms there. They gave me information as well. They are hoping to expand their style of adult care across the nation. I think this would be wonderful as it seems like the type of place that my oldest could really flourish. I will be speaking with some local people about that. If you happen to be in the Dallas area and would like to understand more, please contact me.

That evening, while at the Exhibit Hall Opening Reception, I kinda, sorta, bumped into (not physically) Lisa Jo Rudy who has just released a book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities. She had given a presentation during the morning hours that I was sitting with the other bloggers. While I had been so disappointed that I did not get to her panel, I was extremely happy to see her. We ended up talking until they closed the Exhibit Hall down. Her most helpful tip that I will definitely be using next summer, is to buy membership for the different museums. That way when someone is about to meltdown (adults or kids in our case, lol), you can leave and not feel you’ve spent a terrible amount of money for only 30-60 minutes. You will be able to go back and enjoy it again and again. Please check the book out. I know I will be!

That was the end of Day 2. And while it wasn’t filled with many panels, I was very happy with how the day progressed. I will be wrapping up my post for Day 3 within the next few days. I hope you all can learn a little bit more.

My good friend at the Dallas Morning News Mom Blog created a post today about a set of Special Needs catalogs. It got me thinking about all the catalogs I have found over the years. I haven’t posted a blog in quite some time and for that I apologize, but I hope this one will be helpful to some of you.

For those unaware, most Special Needs catalogs have whole sections of products for Sensory Integration. Everyone suffers somewhat from sensory issues, and most of us Spectrumites do quite a bit. I often dream of making a sensory ‘floor’ on a 2 or 3 story house. One for each member of the family attuned to their sensory needs.

To that end, I have decided to share my ‘stash’ of Sensory catalogs I have come across. All of them you can request catalogs from for free. There are some that will keep you on their mailing list and send you a catalog each new season. Each one you can get roughly the same products from, but each has it’s unique items you can’t find elsewhere. All links go to their Request Catalog page as they can sometimes be difficult to find, but keep in mind, most if not all have their catalogs available online as well. I just prefer copies I can take with me to write or put stickies in.

• School Specialty (formerly Abilitations and Integrations) gives various options depending on what you need. I get the Special Needs catalog as well as the Sensory, Learning & Behavior Solutions catalog. My favorite product, which is from their own line, we ordered from them is their Gel-E-Seat as it’s multipurpose. It serves as a weighted lap rest, a movement seat and a fidget. After two years, including a move across country, two very rough preschoolers, it still serves it’s purpose, though has lost some gel. I would still recommend if you have a sensory room. I found it calming as a fidget, my boys used it for it’s other two purposes.

• Southpaw Enterprises, similar to School Specialty creates it’s own line of products. We have yet to order anything from Southpaw, but that’s not saying a lot. We try to find things locally. However, I’m relatively confident that the wonderful therapy center we take the boys to uses their products.

• Therapro, Inc while I’m not aware of their own product line, I am impressed with the items they do have. It’s all well arranged and you can find things in their catalogs that I haven’t seen in any others. I very much recommend their catalogs.

• Flaghouse catalogs are the ones that Leigh was speaking about on her blog. I would recommend reading her blog for information. I have requested my catalogs from them and may update this post later.

• Fun and Function found me today on Facebook. I immediately looked at their digital catalog and found an item I want. They have several types of weighted clothing, but it’s the first time I’ve ever seen a weighted cap. Their multisensory section while it has some large dollar signs give great ideas on how to create a soft ambient room for calming.

What I typically do is keep these around and refer to them to teachers, therapists and other professionals. I’ve given old copies away to new therapists as they often don’t have their own collection yet. You can also pretty reasonably find gifts for friends and family in them as well. You obviously need to be attuned to their sensory issues, but they make very personal gifts. Of course, they are also great to refer to if someone doesn’t understand quite what to get for you as well (only kidding!).

A month ago we were celebrating the boys’ birthdays. Subsequently, we also had to plan for their yearly IEP meeting. All of those events went well and as planned. Since then though, I have noticed my 5 yr old (the youngest) has become much more impulsive. It’s really been building up. He already has sensory issues, his ASD diagnosis, but it’s becoming ever so clear he is definitely ADHD.

He has no patience. He used to be really good at waiting the 5 minutes for us to stop what we’re doing before attending to his needs. Now he has a hard time waiting more than 30 seconds.  If he doesn’t get what he wants, he lashes out then immediately apologizes. So he knows what he’s doing is wrong, but doesn’t seem to have that process time before he does the action.

So my choices are many. We’re going to implement a ‘Good choices, Bad choices’ system. For every good choice, he gets so many tickets which can be redeemed for things he wants. They use this in the floortime group we have him in and it works for them.  When he makes bad choices, he gets tickets taken away. So he can always do lots of small ‘good choices’ to gain tickets back for a bad choice he did. We need to get a new sensory diet in place as his sensory needs have changed. I really want to try everything before looking up psychiatrists and neurologists to take him to.  We are also thinking about ways to add caffeine to his diet in very small doses. He generally doesn’t like most things with chocolate, won’t drink any drinks that typically have caffeine, so it will be difficult to add it. We’re hoping to see some of his more nervous energy tempered a little. I just don’t want to give him any medication if we don’t have to.

What changes do you think would help? I’m at a loss of where the sensory issues begin and end, where the Autism issues begin and end, and where the ADHD issues begin and end. I can relate to my older son much better because he and I come inward when we get overloaded, but sadly, that is not the case for my younger son.

April is Autism Awareness Month

April in my household means 3 things. It’s the start of the Autism year. It holds both boys’ birthdays. It is the start of Spring. Although, depending on your family history, you may also see it as National Child Abuse Prevention Month, Stress Awareness Month, Alcohol Awareness Month and a host of others. Does anyone else find it odd that Autism Awareness shares a month with the three I’ve listed?

With the fear campaigns that go along with Autism, you’d think they picked it just for the three above. They try to show increase in child abuse in families with Autism because of a ‘lack of services’. They definitely say it’s more stressful to be a parent of an Autistic child. When you mix all of those together, surely you get an increase in Alcoholism.

But I digress.

April 2, 2010: Light It Up Blue

World Autism Awareness Day.Org

“They” will be starting tonight. Across the US, the Light It Up Blue campaign started by Autism Speaks in honor of their World Autism Awareness Day has encouraged major buildings to turn blue for Autism. I know AutSp’s puzzle piece is blue. They have also asked that people wear blue on Friday April 2, 2010 to show their support. To me, this just shows support of AutSp’s mission. I have made sure to tell everyone I know not to wear blue tomorrow.

Instead, a variety of suggestions have been tossed around for those of us that want to show our support to Autistic people (including ourselves). I have chosen to generally ask others to wear a Spectrum shirt, ie something with rainbow colors. I know rainbow usually signifies Gay culture, but it is also a spectrum that signifies the Autism Spectrum. Conversely, you can choose to Infinity Symbol (like above), the Autistic Pride Flame, the “I’m not a Puzzle” shirts, so on and so forth. The key idea is to stay away from puzzle pieces, puzzle ribbons and solid blue.

As this month goes forward, my goal is to attend as many of the Autism Awareness events I can. Make sure the ND presence is known off the internet. And of course, execute a well planned birthday party for my two Autistic kiddos and their non-Autistic classmates. Integration works!

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.

Do those of you with Autism and parenting find yourself not meeting the 2/3 rule? I’ve been attending a support group for parents with Asperger’s kids and for adults with Asperger’s. It has been stated more than once that maturity level of people with Asperger’s is 2/3 their chronological age. I’m 27 now, so I according to this rule should have the maturity of someone that’s 18.

Now, without a doubt, I have met people that meet this rule. I just find myself not. Then again, I don’t think it has anything to do with neurology. I know some people I went to college with that are still maturity wise at a 20 yr level. I attribute a lot of it to the fact that I have kids. My own instinct was to mature with the birth of each of my children. This does not hold true for everyone. Again, I know someone who has a child that doesn’t have maturity.

Also, does being articulate change your perceived maturity level? I was complimented that I am one of the most understandable of the ‘Aspies’ that attend this support group. I’m sure it doesn’t hurt that I am raising Autistic children. So I can understand where the parents are coming from as well as the adults in the group. Have any of you witnessed this phenomenon? Especially those of you raising Autistic kids as well?

I think the 2/3 Rule is very subjective though. It really depends on the circumstances with your life.

Today, I came across a casualty of ‘Autism is evil.’ campaigns. My oldest, who is more affected by Autism, was invited to a birthday party of his classmates. It’s a huge step forward that parents and kids alike are able to invite him knowing his differences. He even was withdrawn, sprawling and very noticeably upset within 5 minutes of coming in, but my little guy just wanted to stay. We stayed.

Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

Until about 18 months ago,  I never cooked.  My repertoire consisted of breakfast foods & I was lovingly dubbed “The Frozen Food Queen” by my family.  I could bake up a storm, but if it wasn’t microwavable or came in a box that required nothing more than opening a can of tuna…it was not going to appear on anyone’s plate.

The reasons for this were many:

1. My grandmothers both made me baker’s helper from the time I could walk.
2. My mother always shoo’ed me out of the kitchen while cooking.
3. My mother was terrified of us kids even making a sandwich with a butter knife.
4. My mother’s OCD tendencies did not allow for us to leave a crumb in sight.  (Funny, I married her male counterpart, huh?)
5. I could not possibly conceive of having more than one thing “going” at a time.  It seemed like utter chaos to me.

I should mention that the chaos thing follows me.  I have the Chaos Arrows tattooed on my right arm.  It is ever-present in my life.  I can NOT function in chaos.  I shut down.  I need order, but I have a hard time keeping order.  The minute I get a hint of things (house, work, kids) getting out of order, instead of fixing it, I shut down and then it becomes a mountain.

But enough about all that…That’s just background.  Here’s what I REALLY wanted to talk about.

What Do You Do When Your AS Munchkins Start Cooking – Unsupervised?

About 18 months ago I started cooking.  The kids were coming to Germany.  I got re-married.  I wanted to take care of everyone.  Turns out, I’m kinda good at it.  I treat it like a puzzle.  I LOVE puzzles.

So does Max.  Max and I are very much alike in many ways.  The whole order/chaos thing.  Well, there are a lot of parallels…

From the time he was born, Max was always very deliberate.  When he was 2 & Madison was 3 1/2 we went to the swimming pool at our hotel.  I would not let go of Madison, but Max didn’t worry me.  He watched every step and I knew he wouldn’t accidentally fall in.  Madison, on the other hand, would watch everywhere BUT where he was going.  (He still does!)

Max has started cooking.  He’s a regular Egg-Aficionado!  He’s woken me up to a plate full of delicious eggs.  I’ve asked him not to cook while Mommy isn’t there to watch, but tonight I realized he’s still been doing it.

I went to get eggs for the dinner I was making and we were out.

I am completely overcome with pride and absolute fear at the same time.  Pride because he loves doing it and feels good about it.  Absolute fear because if something went wrong – Max would shut down.  Just like when the TV comes on too loud on a static channel.  Suddenly, he can’t find the remote.  He can only clamp his hands over his ears and rock.

I want to foster EVERY SINGLE THING he is good at.  I don’t want him to get hurt.

Is my own need for control stifling him?  Or am I just being a cautious parent?  Thoughts?  Ideas?  Compromises?

*NOTE: I realized halfway through that I had neglected to state the ages of my kids.  Morgan is 14, Madison is 13 and Max is 11.

My name is Holly and I’m an addict OOPS!  Wrong room.

In all actuality, I am an addict of sorts.   I am addicted to the world I live in.  It is one of constant surprises and amazing wonder.  Sure, I spend a couple of months a year ready to move to a cave and never see the light of day again, but those are just moments.

I am a mother, a writer, war veteran, dog lover, wife, soon-to-be student (again), medic, housekeeper, music nut…Are you getting the general picture?

I have resisted my own dx for years and will likely continue to do so.  I like me.  I don’t want to change me.  Even when me, myself and I are at complete odds with one another.

I followed a very interesting path via Twitter and found this site.  I answered the Call to Arms and perhaps my life can (if nothing else) give YOU some comedy, me some catharsis and “them” some insight.

Without further ado – here are the players in this world of mine.  I like to call it Schizamore.  Crazy Love.  It works for us.

Holly – Me.  I am all over the map.  I love a lot of things, but I lack the patience with most everything in the world.  I am terrible in a crowded room, loud noises and I cannot talk on the phone if there is any outside stimuli.  My friends have often referred to me as having “a lot of layers”.  Even I haven’t figured them all out.

Kris – Husband & Stepdad (OCD, ASocial, Borderline…Anyone else wanna scream it with me?  SPECTRUM!!!)  Kris has no filter and doesn’t play well with others.  He won’t come up a lot as he’s still in the Army and, well…it just isn’t a good idea.

Morgan – Daughter (Artist, actress, sweetheart who has no problem being her own person – closest thing to NT we have here)

Madison – Son (In process of dx but verified Oppositional Defiant Disorder)

Max – Son (Aspie with a lifelong love affair with science.  Sound & touch sensory input issues…Best friend is the dog)

Loki – Our Siberian Husky.  Works hard at keeping us together and functional.  Has a nose for oncoming meltdowns and reacts like you might expect a trained service dog to.

This is my immediate family.  These are the people I can’t live without – Even when we think we can’t live with one another.  It’s all a matter of staggering our “moments”.

Nice to meet ya!  Pull up a chair and get comfy, ya hear?

What I’ve learned…

1. ‘All children are different.’
   • This one seems pretty self explanatory. But in my case, my son seems to be different than ALL children.
2. Peer pressure is not always a bad thing.
   • We’ve discovered that my youngest will go potty at school, but not at home. So I explored this. What was different? We use the same methods. We have same premise of First-Then. Then it dawned on me when his SLP from school was here. She said he realized he got to go back to centers faster if he just pee’d.
   • She also said that they didn’t have anything as eye-catching as Super Mario Kart Wii. It turns out they have something even more so. They have his friends. You can pause a game. You can take a game with you. But friends? They keep going whether or not you’re there.
3. Reinforcement only goes so far.
   • He LOVES the idea of a potty party. He LOVES stickers. He LOVES edible treats. Combining these together and it still doesn’t help him go. Though, I wonder if I had a big gift wrapped box with party hats, stickers and candy just out of reach if that’d work.
   • Tomorrow will be the test on this. I am going to create a sticker chart tonight. In the morning, there will be a ziplock baggie of skittles. He knows we have cupcakes and party supplies waiting, but they will go into a big box. Everything will be right in front of him waiting for him to go pee.
4. You don’t actually WANT to know what everyone else has done to potty train their kids.
   • This ends up being an off-shot thing I’ve learned. Many parents seem to think abuse is the way to go. No wonder some kids don’t train for years. I’ve been told to stick my son in a cold shower. That I should spray him with cold water when he goes poop in his pants. IE torture.
   • I should only buy one pair of underwear. And each time he makes a mess in them, he has to watch the washer and dryer until they’re done. IE seclusion.
   • Some things you just don’t want to know about people. I know that there are abusive parents out there. But these suggestions came from people who in every other area treat their children well! Parents will go so far as to abuse their child to get them trained.
5. ‘Positive Practice’ may be the sure fire way to train.
   • But I will never ever EVER use it again. I’m sorry, but the use of aversives on Autistic or any disabled or non-disabled child should be outlawed. This goes right along with Restraint and Seclusion to me! Apparently, conditioning is not only used for dogs, but for CHILDREN as well. I’m sorry, but there is something wrong with the practice. Why reduce a child to the level of an animal, or sometimes below? They are living human beings with emotions and awareness.
   • What does it say to them when parents and clinicians and professionals of all sort say that everything they do is wrong? No wonder there are some Autistics that believe in no intervention if they were subjected to these methods. No wonder there are people who mentally break and end up in facilities. It is a sad thing, aversives.