ASPERGER'S SYNDROME

Which one are you???

Most children live in a dog world: A dog loves to be around people and socially interact with them. They willingly show affection, and follow their master’s commands. They also love to play and hang around other dogs no matter what activity their engaged in.

Asperger’s children live in a cat world: A cat is generally a loner. They prefer doing things their own way and like/need their solitude. Cats come to people on their own terms in their own time and they aren’t very social unless they choose to be. They have a routine and like to stick to it. They have one interest at a time (usually that silly piece of string they love to paw at). And when backed into a corner, a cat will lash out.

Evan is a cat - you can probably tell by looking at the picture above, he loves mice!

Okay, so he's not really a cat, but he lives in a "cat" world. I don't know why this is so difficult to write - it's been going on in our lives for 8 years. I think sometimes it's harder to write about it than it is to tell people about it, at least, it is for me.

I'll warn you now this is a long post - I've debated blogging about this for quite some time, but it feels right as of now. Please read it when you have a few minutes to absorb it fully - and read it with an open heart and mind. Finally, please only leave a comment if you have something positive to say. We've had enough negative in all the years this has been going on - and it's never going to be truly over.

Evan's Story

We've had issues with Evan basically since he was a toddler. We noticed things were different when he was 2-3 yrs. old. We started early intervention when he was about 3 1/2 (thinking ADHD but not knowing for sure) with behavior modification therapy, chiropractic care, diet restrictions - anything that DIDN'T require medication (to see if we could "fix" his problems that way). Nothing really worked and by the time he was 6, we finally resorted to medication after confirming though the Conner's Forms, his teacher, and with our pediatrician that he was, indeed, ADHD. He could never sit still - just constantly bouncing all over the place; could never focus; didn't have great interaction with other children socially (was pretty behind in social skills or was just a loner of sorts if others weren't doing what he wanted to do). He also couldn't do anything without asking him over and over and over again. So we started off with Strattera (the only non-stimulant ADHD medication) and it worked fairly well for about 1 1/2 years as we kept upping the dose.

Then about 2 yrs. ago or so, he started showing other problems - not just the ADHD stuff, but poorer social skills and wanting to "not live on this earth anymore", among other off-the-wall things. We took him off the Strattera as it seemingly stopped working, and tried some stimulant based drugs (Adderall, Focalin), but they made things 100 times worse! On these drugs, he was having paranoia episodes, psychosis events, nervous twitches - so we took him off everything - and that's when our pediatrician said there was a lot more going on than just the ADHD, and he had to give this case over to someone who knew more about this kind of stuff. So, he recommended we see a psychiatrist. When we started seeing the shrink, his evaluation concurred with the ADHD but he also diagnosed him with Depression (or possibly it might turn into a Bi-Polar Disorder diagnosis (BPD) down the road). Apparently stimulant drugs can cause the freakish episodes in kids who potentially have BPD or mood disorders. So we put him back on the Strattera for the ADHD and added Prozac for the Depression. The Prozac helped level him out in some ways, and he no longer wanted to kill himself, but a few weeks later, he suddenly wanted to kill his brothers and/or me. We were also having all kinds of school, social, and emotional problems with him the past few months. No one really knew what to do with him - and he completely isolated himself refusing to talk to anyone about his problems, so the psychiatrist referred us to the Gallahue Day Therapy Program to see if they could help him, and that's when things really started making sense for us. They immediately took him off the Prozac and put him on a mood stabilizer, which has been a good thing. He went 3 days a week (they picked him up at school at 11:30 a.m. and stayed at the clinic until we picked him up at 5 :00 p.m). We would also occasionally have a family therapy session. He "graduated" from the Day Therapy program April 3rd after 3 weeks in the program, but they truly believe after all their evaluations, observations and sessions, that in addition to the ADHD and Depression, he also has Asperger's Syndrome.

As a little background for you, Hans Asperger was an Austrian pediatrician who, in 1944, found a pattern – occurring mostly in boys – which included a lack of empathy, little ability to form friendships, one-sided conversations, and an intense absorption in a special interest (that is the quick paragraph, Cliff's Notes version of the syndrome)!

Asperger's (named after it's founder above) is an Autism Spectrum Disorder on the high-functioning end of the spectrum. The Day Therapy program we went to helped him learn some coping skills among other things, but they kinda did all they could for him there - they see their clinic as an "ER" of sorts - so it's never a long term thing. They did however recommend he see a psychologist on an ongoing basis who specializes in child psychiatric disorders (like Asperger's, Autism, BPD, ODD, etc...), so he goes to a great female child psychologist here in Fishers once a week to continue helping him in learning the appropriate way to behave, act, interact, socialize, etc. Hopefully he'll learn all these in time - he'll have to in order to get along in society appropriately. There is no cure for Asperger's - and no real medication that can help with social issues. Since he has some mood disorders and depression in addition to the Asperger's & ADHD, he's on 2 medications that seem to help even him out, but when you have something like Asperger's, no medication is a fix!

Even though the Day Therapy therapists and psychologists saw the Asperger's in Evan (they say he's "classic Asperger's"), we had a more in-depth psychological testing session yesterday with a renowned psychiatrist. We, as his parents, also definitely see the bigger problems: the lack of understanding/capability of showing or feeling concern for other people's emotions; the very rigid thought process; his immaturity in the lack of social skills needed for human development; the difficulty he has in making/keeping friendships; his ability to only have one (intense) interest at a time - and let me expand on that for a minute...

When he was a toddler, it was cars. Up until about 1 1/2 years ago, it was anything pertaining to dogs (I think he can still tell you every species of dog and what their personality traits are). For the past 1 1/2 years, it's been all Pokemon. Thank goodness it's made a comeback recently because some of the friendships he has now depend/rely on the Pokemon craze. These interests are all-consuming! It would occupy ALL his time if we let it, and he rarely wants to deviate from it. Luckily for us, this has a positive side in that it's also helping improve his social skills - we're working hard on those.
Anyway, we just felt like we needed to take this last evaluative step to verify what we already knew in our heart.

The little bit I have learned so far in one of the books I'm reading on Asperger's by Tony Attwood describes Evan to a T - but he has other issues that make it a little harder - and may have made it harder for the "professionals" to see it right off the bat. For one, he's extremely intelligent (his IQ is 126!), and of course he also has the ADHD and Depression. Socially, he's way behind his peers, doesn't much care what anyone thinks if it doesn't pertain to him or his interests, has little understanding or concern for others emotions, etc. - but because he's so smart, he has sometimes been able to compensate for it (which apparently was why is was so hard correctly diagnosing him all these years)! He can observe how people behave, but doesn't always appropriately apply it - so it comes off really inappropriate sometimes. I know it will take time for him to learn the adaptive skills he's going to need, but I know we have an even longer and harder road ahead of us as he gets older and hormones kick in!

This is hard to sum up quickly. Evan's a great kid, we just have to help him be as healthy and as happy as possible. It's daunting on some days, but other days I feel like I can conquer the world. I also worry about the other 2 boys - if they'll have this someday or if they'll be "normal", but I basically just have to put it in God's hands and let Him help me with all of it - it's too much for us to bear on our own.

So if you could just offer up some prayers when you think of us, we would appreciate it. I used to think that if I kept it out of sight & out of mind - it would disappear. ADHD was okay because tons of kids have it and it's "socially acceptable" in most circles, but this condition isn't like that, and it's not as well-known. I'm going to become an advocate not only for my son, but for the community. I want to educate as many people as I can about this syndrome. I was asked to help give a presentation at his school's staff in-service day last week, and that felt good helping educate our educators! I prepared a powerpoint presentation to help teachers and staff know how to help a child with Asperger's (if you would like to see it, I can forward it to you via email). I'm also hoping to start a family support group for Asperger's. Since it's on the Autism spectrum, I would love for it to become as well-known as Autism someday.

Here's why:

Most people look at these children having tantrums, acting in inappropriate situational ways and think "my kid would NEVER be allowed to act like that" - yet they don't know what is going on with that child. This happened right in front of me just the other day while I was singing at Evan's school for a Personal Best Program. All the classes get to sit in on the program, but not everyone receives the award. I saw this child sitting in front of me during the 1st and 2nd grade program, and he was clearly distressed that his name wasn't being called for recognition. Some of his mannerisms and actions were "out of character" and my heart instantly ached for him. Yet the parent sitting next to me (an acquaintance friend) turned to me and said "my kids would never act like that". Part of me was astonished and angry for the comment, but the other part of me felt sorry for her - she was obviously caught up in her own child's "personal best perfection" that she just couldn't see outside the bubble. Maybe this is why I'm so passionate about wanting to help people understand!

You see, Asperger's is unlike other "visual" conditions. You can tell if a child is physically handicapped, you can tell if a child has Downs Syndrome - simply by looking at them. But an Asperger's child looks COMPLETELY NORMAL! It's what's happening on the inside that is their detriment. If they tantrum, act out inappropriately, or do things that other children typically don't do - it just looks like their parents are to blame for failure to "bring them up right" or "discipline them correctly". So again, my goal is not only to help Evan and others like him, but it's also to help the general public know more about these types of pervasive development disorders.

My friend Dodi also has a son recently diagnosed with Asperger's. Dodi is in my Bunco group, and we really bonded a few weeks ago with the private pain we've been going through as parents of a child with Asperger's. Mason is a lot younger than Evan - and each Asperger's child is uniquely different, but we all experience the same pain of not having that "perfect" child . . . yet, they ARE perfect to us and especially to God.

Dodi has started a blog dedicated to helping Mason - it's an outlet for her to share her experiences with her son. I'm so proud of her for doing it!!! Click on "My Friend Dodi's Asperger's Blog" under Cool Links to the left for more on her story.

Someday I'll ask God all the "why's" - until then, I'm going to do all I can to help Evan, and help others like him and their families. Asperger's doesn't have to be a negative - we can turn it into a positive. Maybe this has been God's plan for me all this time - I've just finally opened my eyes to look at it head on and embrace it . . . ALL of it. That includes not keeping it a secret anymore, not dodgeballing it, not making excuses for why Evan is the way he is. He's one of the best things that ever happened to us, and I'm going to cherish him so that he always knows that!!! For some reason, God chose us to be Evan's parents - I just hope He thinks we're doing an okay job so far - we wouldn't be where we are today without our faith in Him!!!

To our family and friends who've supported us, God bless you for any part you've played in Evan's life and in ours. This blog won't be a forum for Asperger's, but if you ever want to know more, or know of someone who needs support and/or education - please contact me. Thanks for listening.