Autism vs. Asperger's Syndrome - We have the answer!

In December of 2009, Stephen was diagnosed with Autism Spectrum Disorder. This is a VERY broad diagnosis which includes Autism, PDD-NOS, Asperger's Syndrome and more. When I announced to friends and family that the results were ASD, but not specific, I did say that figuring out which part of the spectrum Stephen fit into would be a long process that could take months. At first, I was sure it was autism. Then, I saw another side of Stephen that was more aspie (nickname for a person with Asperger's). We did have a doctor say that is was more than likely PDD-NOS if we could not pin down which side of the spectrum Stephen was on, but the doctor made that assumption based on history only.

To our relief, Stephen has finally started back to seeing his occupational therapist. He spent 1 year with her when he was in the first grade. He went the entire year of 2nd grade with no O.T. at all. He does work with a speech therapist at his school, but we saw a rapid regression. I made the call a few months ago to get him back in, and our first appointment was yesterday.

I was very comfortable with his O.T. giving a definitive answer of Asperger's Syndrome or "AS." Although we have heard it from others, it was never from a specialist that treats these kids every day and has worked with Stephen every week for a year. Ms. Terry confirmed that Stephen is DEFINITELY an aspie, which is good news. It's the highest functioning form of Autism Spectrum Disorder. Stephen is very bright and makes really good grades in school - especially math. He could talk to anyone all day about video games and his favorite comics. He has a very rigid routine, much like a person with Obsessive Compulsive Disorder. I don't know if that will develop into that particular diagnosis or not. Right now, we are treating his symptoms and difficulties, rather than the name behind this "beast."

The main things we will soon be working on are sensory processing integration, communication between his left and right hemispheres of his brain, motor coordination, social skills and working well with others as he will be doing more and more in school as he moves up through the grades. I can see now that his love and fascination of mathematics could lead him to a very successful career in technology, programming or engineering. He's going to be the brains behind the business, but will not be the one to manage others, make presentations or be forced to work with a team of people - and that's okay.

We are trying to teach Stephen that Asperger's is not a bad word. It does not mean that he's a bad kid or a stupid person. It's just part of his personality and what makes him tick. I try to tell him every day how smart he is and we practice social skills often, although he is resistant right now. I know that will get better with time and therapy.

He's doing well in school this year. 3rd grade is a difficult one, but he has a very patient and loving teacher with peers who know he's special that try to help him out and accept him for who he is. They know that Stephen is just... well... Stephen. And we love him for who he is - the whole package - Asperger's and all.

Tourette's Syndrome Youth Ambassador Program & MORE

Check out Phillip's absolute favorite presentation of Tourette's Syndrome. The program was started by Tourette's Syndrome Youth Ambassador, Jen Zwilling, who won the 2007 Brick Award. This is a MUST see - seriously! It would be so cool if Phillip got the info and training to do this program with his class. I bet he would love that, too!

Also, Discovery Health is about to start Adventures in Parenting Week. First is Tourette's Uncovered, airing on Discovery Health Monday, September 13th, at 9/8c. Along with the television special, there's great info on Discovery Health's How Stuff Works website about Tourette's Syndrome. Finally, we've got some education about TS getting out!

So, check out all this awesome stuff! I don't know much about Discovery Health's Tourette's Uncovered, but I can say it would take a LOT to top Zwilling's TS Youth Ambassador Program as my ultimate favorite educational Tourette's Syndrome video. Enjoy!

School is in Full Swing Now!

It's been one crazy month! The boys started back to school about 4 weeks ago. I'm doing a lot of reflecting today on past school experiences, what I've learned from our trials and tribulations and how I can use that to better the experience of public schooling for my boys.

I would put communication with teachers and specialists as a very high priority. So far.... eh. It's not so bad with Stephen's teacher. I seriously need to get (or find) her email address. I think she did give it to everyone, but there are so many forms and papers to fumble through that first week! I've already let her know that an informational conference would probably be a good idea since Stephen's IEP is not up for review until October. It's like torture to wait because I would love for everything to have been in place and ready to go by the first day of school. I had to request a peer helper again, give suggestions, etc. I thought she had this info, but I guess I was mistaken.

With Phillip (going by "Phil" now), it's a bit more complicated. He's in the 6th grade & has 3 teachers. I would love to give him more freedom and independence - not having to see his mom up there every-other-day, BUT I have got to talk to his teachers. I didn't know until the Parent/Staff Organization (PSO) meeting & Open House that Phil's teachers did NOT know of his special needs! The counselor assured me that the teachers have his information. I became suspicious when Phil came home from school upset that he got in trouble for drifting off to sleep. For Phil, this is a medication issue and he's going through some adjustments right now. I sat down and quickly scribbled a letter for all of his teachers one morning before school. I gave everyone my contact info & requested their email addresses in return. So far, I've gotten a response from ONE person. Crap. And, again I say - CRAP. I cannot sit and write letters all the time. PLEASE God, I need their email addresses! That way, they all get the same message at the same time and can reply to all, plus copy the counselor, etc, etc.... If I can't communicate with these folks, we're going to have a tough year. At least they know now that Phil has Tourette's syndrome. I hope they read the info I wrote down carefully. I told them I'd like to have a conference to discuss his special needs and accommodations. I shouldn't have to do this, though. They should have this info already, but better to be redundant than take the chance that they are in the dark on this issue. It's just frustrating.

I can't really go and peep in on the teachers like I could last year. I don't know why. I could pop my head in Stephen's classroom at any time! I didn't so much with Phil, but I did show up to lunch sometimes and ended up checking in with his teachers. I helped them out on certain occasions which opened up an opportunity for better communication.

I just have get off my lazy butt to initiate these conferences with all the teachers. It's a matter of just doing it, but the motivation is not really there right now. I think I'm just tired of telling our story so many times. I would love to email links to all of the teachers about my boys' diagnoses and their medications. That would be helpful, would it not? I cannot possibly relay all the info I need to relay in what will probably be only 30 minutes allotted for these meetings.

Sometimes I just want to take a break from being "mother of special needs kids". I want a day to not think about it, but it's the reality of my life, their lives, how I think and why I do what I do, why I say what I say - so ingrained in me that I cannot escape this stress and responsibility to care for my boys while keeping myself emotionally healthy. Is it so bad to want a "normal" day? We have good days and bad, but never "normal." I know - there is no normal - except one of the settings on a washing machine. That's it. What about average? Can I have an average family for a day? Oh, but wait... that would be boring, wouldn't it?

So that leads me to what I tell so many people who ask, "How do you do it?" and "You must be so patient," and "You must stay tired." I tell folks that an average family with an average life is boring. I love my kids - the way they are, special needs and everything. Sure, it's tiring and stressful, but rewarding to know that God chose me to raise these boys. And, I can definitely say there is not much "boring" going on in the Lane Gang.

I guess I just have to take on each day as a new adventure. I have to start with a deep breath and prayer for sanity to get myself mentally and emotionally ready for the tasks that lie ahead of me every single day. I'll make it my goal to get these meetings set up this week & will let you all know how that goes. Until then... keep sending me those good vibes!