Saturday, April 30, 2011

Yes. My Kids are Amazing, and They Surf Too!!!!

Tomorrow is May 1 and my calendar reads: SIGN UP FOR SURF CAMP 12:01AM!!!

I just checked the website and that has now been moved to May 15 but this is still a great time for me to tell you about an amazing organization and an amazing opportunity for families dealing with Autism.


Seriously, go to this website and learn all about this organization. Last year was our first day camp and it was probably one of the top 5 experiences in my life. We got there an hour before our surf time, set up on the beach with chairs and cameras. We looked out into the Atlantic just in time to see a line of 5 Autistic kids up on surf boards with professional surfers holding them up and they were headed to shore! Everyone was clapping and cheering as they came in and each and every child was smiling. When it was our turn the volunteers and surfers just scooped up the boys, put life jackets on them and put took them out. Adam loved laying on the board and bobbing up and down with the swells. Cameron loved getting up on the board and coming to shore. It was such an amazing thing to witness, I was overwhelmed, I was speechless, I cried.

We'll be registering again this year and I will be hoping that we get a spot in this years camp in either Virginia Beach Aug 20 or Ocean City Aug 18. Maybe we'll see you there!

Here are some details and then I'll give you some pics!

  • The camp is FREE.
  • Your surfer will get a tee shirt and goody bag.
  • There is drinks and food all day long.
  • The area is sectioned off from the rest of the beach.
  • Everyone is so friendly and completely understood that I was super freaked!
  • They "get it", they know that the kids can be worried, they don't mind taking a screaming or crying kid out on the board so they can experience it. Every single one (without exception) comes back smiling and clapping.
  • You will get a surf time but you can hang out all day long if you want. We didn't last year but we absolutely will this year. I don't want to miss a second of all that positive energy and fun.
  • The professional surfers are all professionals, from what I understand pretty well known too! I don't know much about surfing but I was impressed by their credentials. They bring in surfers from all the big professional surfing areas and they travel from camp to camp. Your kid will not be going out into the ocean with some intermediate teenager.
  • You will meet the most incredible kids and the most wonderful parents who know exactly what it is like to have kids with ASD. 
  • I almost forgot the part that made this Mom SMILE, they also contract professional photographers with super long range sport camera lenses. The pictures they take are just breathtaking and a couple of months after camp you will receive a CD or file upload of your kids' surfing pictures! Next year I'm not even going to bother bringing my camera, the pictures I took are no where near as good as the ones I received from Surfers Healing.
  • Sign up for most of the East Coast camps starts May 15, keep checking the website for any changes!

Friday, April 29, 2011

New hope? RDI: The first of my research.

If it's not new hope then it is certainly something new to research for the Lunatic Autism Mom! This week I interviewed a new provider for Cameron for the Maryland Autism Waiver. I liked what she had to say, I liked her philosophy and I liked her energy. I'm pretty confident in my decision to chose her to take over our waiver services. Additionally she can use some of the waiver funds to provide Relationship Development Intervention (RDI). This is something I have heard in passing for years but I never slowed down long enough to do the research on it. Honestly, it sounded like something that was potentially out of our reach both budget wise and time wise. But with cost help and using time we've already allocated to therapy, it certainly is worth another look! For me, another look means research, research, research. 

The first thing I did was go to and I ordered the book: The RDI Book: Forging New Pathways for Autism, Aspergers and PDD with the Relationship Development Intervention Program. I probably won't receive it for a week or so why not check my own library for any mention of this intervention in my current reading list? 

Dr. Sears gives us 2 paragraphs in The Autism Book where he directs us to and explains the goal of RDI as, "to correct the core social deficits of Autism. It teaches children to understand the job and value of personal relationships." Dr. Sears goes on to say that this intervention can help moderately affected children and it is ideal for high functioning children, especially those with Asperger's. (pages 151-152)

I am sad to report that a book I recently purchased (It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success by Richard Lavoiedid not mention RDI at all. I think this book will be very helpful for addressing specific socialization issues that may arise after we've started the intervention. I haven't had a chance to really read this book although I think it is going to be a great reference.   

The last book I pulled from my shelf is Adolescents on the Spectrum: A Parent's Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders by Chantal Sicile-Kira (page 229). It tells us that RDI is, 
"a parent-based clinical treatment that begins at each child's level and teaches skills to the next level. Dr. Gutstein has identified six different abilities that are essential for success in dynamic systems: Emotional Referencing, Social Coordination, Declarative Language, Flexible Thinking, Relational Information Processing and Foresight and Hindsight."

Of course no research session is complete without a Google search, Google loves Autism Speaks and pointed me to this great quick reference page with a link to for more information. 
(Thanks again Autism Speaks!) 

This week I met with Cindy Lenzy, MS at Connect & Learn here in Frederick, MD. I was fascinated by the science of this intervention. The basic idea as I understood it is that Dr. Gutstein observed that the neural connections within the brain of an Autistic patient are somewhat thin and scattered compared to a "typical" brain where the connection from the Frontal Cortex to the other parts of the brain are thick and direct. 

I likened this to the mathematical idea of distance, the shortest distance between two points is a straight line. If you travel that line again and again you will carve a grove within the earth and will be able to re-trace your path again and again even without directions. 

The other thing about this intervention that stuck with me is that is it parent-based and requires a promise from both parents to attend the meetings, do the homework and to watch the webinars. You are effectively putting everyone "on the same page". Rob is an engineer, I am a mom, our methods are not the same but with this intervention consistency is not just a great idea, it is absolutely necessary.  

Obviously, I am just learning about this therapy, as I learn more, I will share more. If we start the program I will probably chart our progress here. But to get down to the nitty gritty, how much are we talking here? How much time? How much money? 

The estimates I have gathered so far show that the intervention runs between $5,000-6,000 per year with an additional $50/month for access to an online site which provides information and webinars as well as a direct connection with your RDI consultant. This cost is offset by the Maryland Autism Waiver which provides 40 hours per year for "Family Training" of which RDI is considered (but I am unsure if you are able to use ALL 40 hours specifically for RDI, I think it is limited). It is possible that IF you had the Autism Waiver and IF you followed treatment without any breaks for the entire year you could reduce the annual cost down to $1,000-2,000. It is possible to reduce this cost further with normal breaks for vacations and holidays and possibly implement at $0 cost to the family (aside from the web fee which is not covered). 

And I was JUST trying to figure out if the Maryland Autism Waiver was worth all the headaches and problems I've been having this year. I guess it is! Its been a while since I've read about a therapy that I was really excited about. This one looks very goal orientated, family involved and quantifiable; right now that gives me hope that we can help Cameron navigate life with less anxiety, better communication and more happiness. 

Thursday, April 28, 2011

A good day.

When you have a good day its worth an entire post!

We started the day with Tornado Warnings but the boys got dressed and even though they were agitated by the change in routine, they both waited (relatively) patiently until it was safe to drive. All reports from school were positive and we slipped into an appointment free afternoon of playing on the computer and listening to Pandora radio with the full understanding that homework would happen after dinner. They took turns, played nicely and turned off the computer when it was time. They helped me chose dinner and then ate without fighting and used all their utensils appropriately.

Post dinner, homework was completed with minimal fuss and two smarty pants boys wow'd us with their superior knowledge of their multiplication tables and the number line (by 1s and 5s) respectively. This earned the all important Wheel of Fortune/Jeopardy combo. And there we have a GOOD DAY! Autism WIN! Now I must evaluate.....

Possible causes for a superior day:

  • Cameron's new medication. We recently started a low dose of Respidral (which is still scary to me). Its still to early to tell if this is the "one" but I'm seeing positive responses so far!
  • Mommy's in a wacky mood. I got to spend a wonderful lunch and quick shopping trip with a good friend and traded emails though out the day to catch up with an old friend. I gave myself a pass at lawn work since I'm SURE the lawn was waaaayyyy too wet from all the rain this morning ;)
  • Daddy is in a good mood and is not traveling for business this week. He was even able to chaperone Cameron's field trip yesterday! 
  • Renewed hope with the possibility of using the Maryland Autism Waiver to partially fund RDI Therapy. This will require further research and a possible blog post!
  • It stopped raining, the skies are blue and the clouds, fluffy. But the rain really cut the pollen count.
  • Its Thursday and tomorrow is Friday which is just awesome!

Anyway to add that up, thats just a darn good day! Wishing you a happy Friday with no tornados, low pollen count, blue skies and fluffy clouds. 

Wednesday, April 6, 2011

Yesterday I Met A Hero

Last night I went to Ivymount School in Rockville, MD to hear John Elder Robison speak. His new book Be Different was recently released, 4 years ago he released Look Me In The Eye. Both books rank highly on my favorite books of all time list (and I haven't even finished Be Different yet!) and I cannot tell you how excited I was to meet John and hear him speak.

First I hope that you noticed that I said in the title 'yesterday I met A hero' not, 'yesterday I met MY hero'. I learned quickly in his books and in his speaking that I am not the target audience of John Robison. It is my sons who will benefit the most by John sharing his stories. My benefit comes in the form of hope, hearing about his triumphs, his obstacles and his perseverance is like being handed a crystal ball that shows not just one future prediction but an entire film stip of possibilities. What I want to share with you are the things John spoke about that really stood out to me, I also want to highly recommend his books. His writing is fun, informative, interesting and really made me understand Autism more and thus, understand my children more.

The first thing he said that struck me was that he felt he did us all a great disservice in his first book. Now, I LOVED his first book, so... what the heck? He talks in his first book about when he found electronics he found a sort of launching pad. He spends about 2 pages talking about getting an electronics kit, studying it and then he took off to start doing amps and guitars for famous bands like Kiss. That is where he said he did us a disservice. In actuality it took more than two pages to learn everything he needed about electronics.  He mentioned that it was because he was a "failure" at school and had no friends he had nothing else to do but tinker with what interested him. So thats what he did. As he put it, "if you spend 3,000 to 4,000 hours working on something you're going to get good at it. If you spend 3,000 to 4,000 hours working on something and you don't get good at it, THEN something is wrong with you."

The next thing that stuck with me was his explanation of why a young guy who loves rock and roll working in the rock and roll industry for huge bands like KISS and creating really cool stage tools like light up guitars and unique sounds would then leave his job. How about explaining why a slightly older guy who sweet talked his way into Milton Bradley right at the time when toys were becoming electronic, creating patents that allowed for interchangeable cartridge games and making $100,000 per year in the mid-80s would then leave his job to become a mechanic? I use the word mechanic in this instance very loosely, he is a mechanic but owns his own shop and specializes in extremely high end automobiles. The kind that I can't even afford to look at too long as they fly by me on I-95. He said he quit these jobs because he was a failure. He was a high school drop out who never went to college (other than to take apart their electronics), he talked his way into his jobs and then was afraid of "being found out". He said he started feeling like a failure young, like 4 or 5. He was a straight F student and was labeled a bad kid. He didn't find out until he was 40 that he has Aspergers, he looked like all the other kids but just wasn't like the other kids. He didn't have any speech delays or other symptoms for Autism and at that time no one was looking at the troubled kids and wondering if there were underlying issues.  I hate to think that he carried that "failure" label with him for so long even while he was creating ground breaking technology that changed the look of stage performances and electronic gaming.  I mean, really, I couldn't make it though one of Cam's doctor appointment waiting room sessions without his beloved Nintendo DS. It is through patents created by John but owned by Milton Bradley that is the basis for all the games we know and love today.

Aside from his education and career, John did something else that really struck me. He got married and had a son, Cubby. You will learn in Look Me In The Eye that John will call people by names that he feels fits the person well. In this instance, he called his son (who's real name I don't recall) Cubby. There are many days when I think of my sons' conditions and I get really pissed off because I was told that they wouldn't get married and have a family. I want that as an option for them, I want them to feel that they can look for and possibly find someone special who brings them peace and contentment. Because John Robison was diagnosed so late, no one ever put that limitation on him and he not only married once but he even remarried after his divorce from Cubby's mom.  He does say that the relationship is very hard and there is a likelihood of divorce but he has maintained long and continual friendships with his ex-wives. Thats a lot more than I can say for most divorced couples I know! He is writing another book about raising Cubby (I think it is called Raising Cubby) and it is expected to be released end of next year. Cubby also has Aspergers and I cannot even begin to tell you how excited I am about this next book!

I seriously wish I had tape recorded his talk. There was so much he said that hit me between the eyes like an arrow and some things that I felt like a punch to the gut. I hung on every single syllable that he shared with us and felt the frustration, sadness and sometimes excitement in the stories. Yes, even stoic and steadfast me actually found tears in my eyes when he talked about a new treatment that allowed him to see other's emotions for the first time in his life after the age of 50. Unfortunately that treatment didn't allow for that specific breakthrough to be long term but it does add to the big pile of hope that I was amassing.

After a very short 1.5 hours of listening to his stories and watching his beautiful pictures on slides, I took away what I felt was the 2 most important lessons:

  • Emotions. He made it very very clear that when someone tells me that my child doesn't FEEL emotions, then they are full of crap. He said he feels emotions very deeply, deep affection, deep pain, deep sorrow but it doesn't manifest itself the same way it does someone else. The emotional response is also not triggered in the same way. Perceiving and feeling emotions are not the same thing.
  • Failure. I want to quote him here but I didn't take the time to write it down word for word so this is very loosely quoted, "it is not the popular kids with lots of friends who commit suicide." He felt like a failure, he felt like an outcast, he didn't have friends, sounds like the suicide trifecta to me. With this he talked about the program at Ivymount where they have a program for high functioning kids, where they have a place for those "outside" kids to be on the inside. How different would his story be if there was a place like that for him? 
Here's the thing, read his books. Look Me In The Eye is stories about his life with Aspergers, a life he lived not even knowing that there was a reason he was different. The stories are so fabulous that the learning is accidental. His new book Be Different (which I haven't finished yet!) is written in a different way. He used questions he was asked in his public speaking to provide a foundation. What foundation he was missing he found in the DSM manual. He explained that he took all the symptoms listed combined with personal experience to allow for a greater understanding of all the parts that make up Autism Spectrum Disorders. I, for one, can't wait to keep reading and learning. I can't wait for his next book to be published and I truly hope that he will speak again locally. 

Now I am going to bring back out the Lunatic Autism Mom to share with you my insanity. I have truly adored John Elder Robison since he was first published. I read his brother's book first (Augusten Burrough's Running With Scissors) and then read Look Me In The Eye and together they created such an amazing snapshot of a life I cannot even begin to comprehend. I've since been a frequent reader of John's blog, I follow him on Twitter, I've friended him on Facebook and I put a "never delete" on my Tivo'd Ingenious Minds episode that features him.  I truly think he is remarkable. Totally looney right? Well it is going to get worse because I am going to email him and send him my blog in the hopes that he will someday have time to read this post and answer these questions:

  1. When you participated in the study at Harvard that helped you to understand other people's emotions better for a short time, do you feel that being able to see the end result was key to the progress you've made in that arena since? Do you think that it is possible without that insight? I ask because of the way kids are now going through treatment to try and train them to recognize emotions, will recognizing lead to understanding? If those neural connections aren't present in the onset of treatment, are the expectations of treatment too high and thus setting the kids up for yet another failure? 
  2. I have always believed, and stated here in this blog that the high functioning special needs population is the most underserved of the special needs community as exemplified in the statewide programs which have exempted ASD kids for not being "Autistic enough" or by the public school system who have extremely few options, usually inclusion or a classroom that doesn't match their academic abilities. Programs like Ivymount are rare and, even if you are close enough to enroll, prohibitively expensive outside of hiring a lawyer to fight for non-public placement. When you are a parent caught between two impossibilities, what do you do? How do we get people to see that these kids are extraordinary, their potential limitless and that what is available to them is not acceptable? 
Dear Mr. Robison-
Thank you so very much for coming to Ivymount to speak. What you say and write makes a difference. The stories you share give hope and understanding. I am very proud of my 2 sons with Autism and lately things have been really sucky. I really needed some hope and understanding, thank you for sharing. You signed my book To Cameron and Adam and I said thank you. Thank you doesn't even come close but I'll say it again, Thank You.
Maggie Harris

Friday, April 1, 2011

The Pieces and Parts that Make up this Lunatic Autism Mom.

In my world the sun rises and sets with my boys so it's no big shock that it occurred to me to introduce you to Cameron and Adam but not myself. Since I wanted to do a blog post today but didn't feel like doing a ton of research, today might be the best day for me to say HI! Here are the major highlights of the legos (pieces and parts) that make me, me.

Name: Maggie: it means A Pearl. Depending on who you ask, you will get a different answer to where my name came from. On my Dad's side it appears that I am named after my Great Grandma Maggie. On my Mom's side it appears that I am named after my Great Grandparents who's last name was McGee. But if you were in the hospital on the day I was born then you would have seen Days of Our Lives on TV featuring one of my Mom's favorite characters, Maggie Horton.  I guess it's anyone's guess as to who is correct but it seems as though, even at birth, I strived to please everyone :)

Hometown: I count Lebanon, Missouri has my hometown. I didn't move there until I was in 1st grade but we stayed until I graduated High School. We ended up moving the day after graduation so I have NO IDEA what kind of mischief all my classmates got into that summer before college.  I did hear rumors though.....

Growing up: I was a geek trying really hard not to be a geek. I liked school (I really did!), I was always excited to go to class to learn something new and I was excited to go to school every day to see what was going to happen. I don't think I fit into any one group, I didn't have many close friends but I do hope I was friendly to everyone. I had no illusions of popularity but I liked to be involved in lots of things. I played tennis, wrote for the High School newspaper, sometimes did track and field (threw shot put and disc because I am incapable of running) and worked at KMart as a cashier.

Education: Here is where it gets tricky, did you know that it is just as confusing to be equally good at different subjects as it is to be equally bad? I was an obsessive student, I had to study very very hard even in HS to get good grades and I did. In the midwest you take the ACT instead of the SAT and I got the exact same score on every section. So I took it again and got the exact same score on every section. So I took it again, same thing. I really wanted the test to show some kind of aptitude so that I could point in some direction going into college but no so off I went with absolutely no idea what I wanted to be when I grew up.

I went to college at the University of Missouri Columbia where I proceeded to major in Computer Science then Mathematics then Statistics then Language Arts. I was probably a Math major the longest and when it came time to plan my final semesters at MU I was going to end up with a Bachelors of SCIENCE (not a BA) in Language Arts because I had too many math classes. Here's the thing, I like to write but I didn't know what I was going to do with that BS in Language Arts so when I fell in love with a boy in Maryland I quit school and moved. This pretty much involved signing documents with my parents that stated that I would in fact finish school NO MATTER WHAT!

I did finally finish. Shortly after the wedding to the boy from Maryland (a lovable, huggable geek like me) I enrolled at UMBC (which touts itself as An Honors College in Maryland) where I wrote Computer Science down as my major. It was short lived and I quit again before finishing the first semester. I guess I'm just not cut out to be a Comp Sci major! In the end I got two degrees from the University of Marland University College both a Bachelors of Science one in Business Management and one in just Business.  Whats the difference? I'll tell you, one is managing people and one is managing business. I worked in Human Resources for a Pre-IPO tech company that went belly up and got knocked up right after I got laid off. hehehehe.... I've never thought of it that way before!

My most important job: I loved working in the tech field but NOTHING compares to being a Mom. As soon as I met Cameron, I knew he was forever going to be the direction I was looking for so long ago. Really, he should have read my resume and checked references before deciding on me but he'll learn due diligence in time.  Our first year as parents wasn't easy, it involved me deciding to be a stay at home mom, Rob's company closing its doors, job hunting, selling our first home and moving to Northern Virginia for Rob's new job.  It was all a blur and by the time the dust settled, Rob had changed jobs again and we had moved back to Maryland and we were starting to wonder if something was developmentally wrong with Cameron.

Our Diagnosis: Cam was 2 when he started his evaluations with Infants and Toddlers. He was diagnosed with Autism at 2.5. At the time I was 5 months pregnant with Adam. In the diagnosis meeting, the doctor told me that since I was having another boy, he had a 1 in 20 chance of having some form of Autism as well.  It was a sucker punch after a hard left hook.  We walked out of that office door and into the world of Autism, never looked back and have henceforth lived by the rule, "forward motion always, no regression". Of course we have dealt with regression with both boys but as rule number one we catch it, turn it around and give it a swift kick in the right direction again.

How I stay sane: I don't always! I have good and bad days just like everyone else, I also have I HATE AUTISM days.  Those are the worst because there just isn't any form of logic I can apply to get out of them. Autism--->is there anything I can do to fix it?--no-->am I doing as much as I humanly can?--yes-->Autism I climb out of the loop and tell myself:
If you cannot fix it, fix your perception.
My hobbies- Staying sane part 2:

  • BOOKS BOOKS BOOKS BOOKS..... I love to read and I do it obsessively. When I was in 9th grade a teacher gave me a list of books that every college graduate should read. I did. When I was in college I read all the "great literature", I wrote papers on the sublime, the next level of consciousness in literature, the true meaning behind the seemingly simple idea of creating a feast for friends, etc. etc. Now I find peace and contentment in smut. Yep! I've put in my time toiling over thick tomes written in old english and dissecting a sentence down to it's ands/ors/buts, now I want nothing more than some well defined characters doing something relatively simple and, by golly, I want a happy ending!!!! Of course as with every Autism parent, I also read a lot of books about Autism, or books written by people with Autism, and that deserves its own blog post (to come). The library is truly one of my happy places on this Earth.
  • Crafts.... I love crafts and I love to collect crafting stuff.  I cross stitch, scrapbook, home decorate, sew, bake, crochet, etc, etc, etc. I worked in college as a pie chef and I love to bake pies, but I hate to EAT pie. Seriously, I hate it and I much prefer cake and cookies. I also have a few things I call Autism Crafts which will also get its own blog post soon. 
  • Obsess.... here's the thing about staying sane, you do it however you can. Sometimes that can be in a constructive way and sometimes not.  There are times when things are so out of control that there is a need to control something, anything and for me that usually turns into diet or cleaning. This is when I will start a diet or make a master cleaning schedule. Being obsessed with something like that creates a situation whereby if you fail the obsession, you fail yourself personally. It's taken a while to recognize that and even longer to turn it around. Believe me, I've got weight to lose and a house to clean but I'll be damned if I force myself back into a no win situation again.  
  • The computer, facebook, et al. I do most of my communicating online. I live far away from my family and my husband travels so some days I live for the connection. I look up information constantly, I read blogs, I always keep my eye open for new decorating ideas and new books by my favorite authors,  and sometimes I just look for stuff that makes me laugh. I love my computer, I love all my portable media and I love my cell phone. I am "connected" 99% of the time.  
My beliefs: Isn't this kind of where the rubber meets the road? The fundamentals of what you believe make up who you are as a person BUT in my opinion those fundamentals do not make you a better person or a lessor person just a DIFFERENT PERSON. I respect everyone's opinion, I will never try to change someone's fundamental beliefs. I am capable of understanding even if I disagree.  So here's the hot topics: 
  • I am a Democrat and pretty liberal at that. I support gay marriage and pro-choice even if they are not choices I would make personally. 
  • I believe that faith exists outside of religion. I, in no way, believe that I am the highest power in this world but I do not believe in "one true God". I respect all religions even if I do not participate in any and fighting and wars over religion makes me sick. 
  • Drugs, Alcohol, Smoking: Never, Rarely, Never. and I am happy with that choice. 
  • Family is the most important thing in the world. 
  • Support The Troops even if you don't support the War. 
  • All children are beautiful and should be protected and cherished. 
  • I learn something new every single day.
Today is April 1, 2011 the first day of Autism Awareness Month. There are a lot of great opportunities for education this month and I hope everyone takes advantage of it!