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6527212 June 29, 2009

Runaway Lisa: An Aberration Story (Part 2)

...awareness is an absolutely necessary factor in breaking destructive parenting cycles that are handed down to us from our parents.

Welcome back to the ongoing story of Lisa Morguess. Go here for Part 1 of Runaway Lisa: An Aberration Story.
Your first marriage resulted in an abusive situation. How old were you when you married? Were the issues in the marriage, or the dynamic that developed, related to the those that led you to runaway from home as a teen?

I was 19 when I married my first husband, and he was 21. He was the boyfriend I had run away with. The abuse actually started pretty soon after we began living together, but by then I felt pretty trapped; I was far away from a home I couldn’t bear to return to anyway. It is pretty typical, too, for people who grow up in abusive families to see abuse as normal. I grew up watching my father abuse my mother, and being abused myself by both of my parents as well as my mother’s boyfriends and my older brother, so abuse seemed like a normal part of existence, sadly.

When you are in an abusive relationship with a boyfriend/husband, the dynamic is a little different, though. There tend to be enough periods of calm that you hang on to this hope, this belief, that the periods of calm are reality, and the awful periods are aberrations, if you will. Every time he smacked me around, I tried to believe that it would never happen again.

Then, too, there is the typical modus operandi of the abuser: to slowly but surely take away just about every bit of self-esteem and self-respect of their abused. The physical abuse is horrible, but the emotional abuse is more insidious and has much deeper and longer-lasting effects.

My husband was a drug addict and an alcoholic. When we were teenagers, we partied together. I did my share of drinking and getting high. . .but by the time we got married (even before I turned 19) I got to a point where I realized how dangerously we were living and I wanted no part of the drugs and partying anymore (and, in fact, I haven’t touched an illicit drug since then, in over 23 years). He led me to believe that he felt the same way, but it wasn’t long before I realized that he was still doing all of it on the sly, and it became a recurring nightmare of an issue throughout our 12-year marriage. He would tell me that I was the one with the problem. “My drinking wouldn’t be a problem if you didn’t have a problem with it,” he would tell me. “It’s your fault I hit you,” he would tell me. “You bring out the worst in me, you make me do that,” he would say.” “Nobody else would ever put up with you. Nobody even likes you. Everyone says behind your back that you’re nothing but a bitch,” he would say to me. “You’re crazy,” he would tell me. “YOU need help,” he would say. After you’ve heard those things enough times, you begin to believe them.

So, in a nutshell, I would say that his alcohol and drug addiction played a big part in the abuse and the general issues in our marriage. I think he was just naturally a very controlling person, too, and I think now, looking back, that he would have been abusive to anybody he was in a relationship with--not just me. When he and I got together, I was so young and needy, and he clearly wanted somebody to rescue. I think he got off on that whole damsel in distress thing. So he saved me from my family and then his own demons took over. And although I was victimized by him, I grew up, and he never really did--when he died at the age of 33, he was the same exact person he had been at 18. And I think the more I “grew up,” the more determined he was to keep me under his thumb.

How did you find the courage to leave such a destructive relationship and move on?

There are a couple factors that came into play in my finally getting out of the relationship. The first one was our son. We struggled with infertility for the better part of our marriage, and didn’t end up having a child until we had been married for 10 years. After Kevin was born, I realized that it was one thing to put up with that kind of destructive life when it was just me, but it’s a whole different story when there is a child involved. And having grown up watching the horrors of abuse and alcoholism with my own parents, I didn’t want my son to grow up with that. To my knowledge, my husband never abused Kevin, but Kevin certainly witnessed a lot of ugliness. By the time Kevin was born, I think I knew in my heart that the marriage was never going to make it. . .but it’s another matter to find one’s way out of something like that. I tried to get my husband to go to counseling with me--he refused, time and time again (after all, I was the one with the problems, according to him). I begged him to enter rehab--he wouldn’t, even after he finally admitted to me that he was addicted to cocaine. I gave him ultimatums, even leaving him once, only to be coaxed back with empty promises.

The impetus for my finally leaving for good was two-fold: the friendship I had with a guy I worked with at a law firm began to develop into something more than a friendship. I was committed to making my marriage work for far longer than I ever should have; the marriage was over--in every aspect--long before I actually filed papers. Without going into a lot of detail for the sake of privacy, I’ll just say that Michael allowed me to believe, finally, that somebody actually could not only put up with me, but love me, and treat me with kindness, respect, and dignity. That’s an incredibly strong motivator.

The final straw came one evening when my husband grabbed our two-year-old son and disappeared with him overnight. He was clearly on a binge. I was frantic all night, not having any idea where they were. My husband called me from payphones throughout the night, screaming obscenities at me. He returned home with our son the following morning, and I went to see an attorney that day to draw up divorce papers.

What did you learn about yourself though the ordeal? Looking back, do you believe it was part of a unique circuitous path you had to follow to find the great place where you eventually landed?

I think the biggest thing I’ve learned about myself throughout everything is that I am strong. I feel weak at times--who doesn’t? But I’m a survivor. I’ve survived some really terrible things, and I am not only here, but thriving and happy. At the risk of tempting fate by saying so, I feel like I can survive just about anything.

As far as it all being a circuitous path I had to follow to get to where I am now. . . I’m not so sure. I’m sure under different circumstances and with different choices, I could have landed in a good place much sooner than I did. But I will say that the struggles I’ve faced and overcome have certainly made me more appreciative and grateful for my life as it is now. Not a day goes by that I don’t consciously take a moment to reflect and acknowledge how fortunate I am.

How did you meet your current husband? Was it difficult to trust again after such a devastating first marriage?

As I said, I met Michael at work. I had been working as a paralegal for a small law firm for several years, and we hired this guy as a law clerk who was awaiting his bar results. He passed the bar and was given an associate attorney position with the firm. He and I hit it off immediately and became friends--just friends. We were friends for a year and a half before it developed into something more than that.
Yes, it was very difficult to trust again after my first marriage. I had been lied to so much, for so long, and in so many ways. . .yeah, trust was a big issue for a long time when Michael and I got together. And the first couple years of our marriage were rough, in large part because of my “baggage.” We’ve worked very hard to make this marriage work, and it’s all paid off a hundred times over. Michael is my best friend in the world, and in spite of the challenges our family is now facing, I love my life, and I feel like this is the happiness I was waiting for for so long.

You have six kids now! Did you always want to have such a large family?

I never dreamed I would have this many kids! I will say, though, that I loved being pregnant so much the first time, that when Kevin was born I instantly decided that I’d love to have ten kids! With my first marriage falling apart the way it did, though, I got to a point where I had to accept that I might never have another child. Then Michael and I got married, and he was eager to be a dad (and he took on the role of dad to Kevin from the get-go, even making vows to Kevin at our wedding).

We never set out to have six kids. I think early on, we talked about having a total of three kids (including Kevin). By the time Michael and I got married, we were both already approaching our mid-thirties, so we didn’t feel we should wait too long to get started on expanding our family. So Joey was born a couple weeks shy of our first wedding anniversary. When Joey was about 18 months old, we were ready to try for a third, and we got one of the biggest surprises of our lives: twins! Even after four kids, we weren’t sure if we felt “done,” and it’s funny because I still remember having this long, serious discussion when the twins were about 16 months old: should we have another, or shouldn’t we? We agreed to wait until the twins turned two to make a decision, but a couple weeks later I found out that I was already pregnant. So Lilah was born shortly after the twins turned two, and then when Lilah was a year old, I became pregnant again, with Finn (so obviously we were still open to having another, although he was a surprise, in more ways than one).

Your youngest son has Down syndrome. How has your family had to adjust to ensure he is well cared for and given the attention he needs?

We did not find out that Finn has Down syndrome until after he was born, and it was quite a devastating shock, probably made worse by the fact that he was a planned home birth and had to be rushed to the hospital when he was less than a day old and had major surgery the day after he was born and then spent two weeks in the NICU. I think the adjustment our family has had to make concerning Finn has been much more of an emotional adjustment than a logistical one. When you are expecting a baby, you have expectations of what that baby is going to be like, and on some level, you map out his life even before he’s born - you imagine him learning to walk, talk, going to school, playing baseball, learning to drive a car, growing up, going to college, getting married, and having children of his own. When you receive a diagnosis like Down syndrome, a lot of your dreams and expectations are shattered . . . and a lot of them you might think are shattered but really aren’t at all. So there was a whole grief process that I went through; I grieved for the baby I thought I was going to have. It never interfered with my love for and acceptance of Finn - I’ve felt this fierce love and protection for him since he was born - but it’s a process of accepting a new reality. My husband didn’t have as tough a time as I did with the diagnosis - maybe because he worked with people with various disabilities for many years, so it didn’t seem so foreign and frightening to him, maybe because he’s just a much more laid back, accepting person, I don’t know. The kids have been very accepting, and honestly, the youngest kids still don’t really understand what Down syndrome is, and I don’t think they feel like Finn is “different” in any way - he’s just their baby brother.

Practically speaking, there haven’t been a whole lot of adjustments to be made. Finn’s a baby - not even a year old yet, so for the most part, he just does what babies do. He’s had a couple of surgeries, and he has a physical therapist who comes over once a week to help him achieve his gross motor skills, but other than that, he doesn’t require any more specialized care or attention than any other baby. I’m sure that as he gets older, we’ll have to make more adjustments as his needs change, but it’s a gradual process.

How did your experiences as a runaway, and as a partner in an abusive marriage, prepare you for the stress involved in having such a large family, including a set of twins and a child with a disability?

Like I said: I’m a survivor. Every challenge I’ve overcome and every heartbreak I’ve lived through has shown me that I’m made of pretty tough stuff. Having a large family, having twins, having a child with a disability. . . those are all big challenges, but they’re also things that enrich my life to a much greater degree than the challenges they present.

Do you believe that your teen and young adult experiences will help you be a better parent to your kids, particularly as teens?

I think those experiences have definitely made me more aware--and awareness is an absolutely necessary factor in breaking destructive parenting cycles that are handed down to us from our parents. That said, I fail sometimes. I fall short of being the parent I want to be, the parent my kids deserve. And at those times when I know I’ve failed, I think about what my experiences as a young person were, and how I felt, and I endeavor to be accountable, make amends to my kids, and purposefully parent them in a positive manner.

When you ran away from home as a teen, did you ever imagine that your life would one day be filled with so much love?

No, I never imagined it. I spent the better part of my life--into my thirties, waiting for happiness to find me, and believing it never would. And it wasn’t until my first marriage fell apart that I realized that happiness doesn’t find anyone, you have to make your own happiness.

Now, I truly feel like I’m living the life I always wanted to have, even with all the challenges we face as a family.
Come back on July 3rd for Part 3 of Lisa's story.

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6527212 April 13, 2009

Lessons in Relativity from the State of Autism: An Aberration Story

It's not a perfect world, but we are luckier than most.

I assume we'd all like to be happy 100% of the time. When I was younger, I was unhappy most of the time. I finally decided that a string of pain would always run through me--it was simply my nature to be a bit dissatisfied. Ironically, this realization boosted my happiness level. I began to take more pleasure in the positives in the mix rather than maintaining an intense focus on that never ending, unshakable sadness. I learned that happiness is relative.

If you've been reading my blog for awhile, you know that my dissatisfaction lingers. I try to keep it in check but at times it peaks out overtaking me, my accomplishments, my marriage, etc. creating complex knots that I work to untie and reorganize like colorful ribbons into nice, neat bows. It's not always easy. Somehow I've managed to use those dark moments to better illuminate the brighter ones, like stepping out of a cave into a startlingly beautiful sunny day.

Thinking about all this reminds me of the movie Flowers for Algernon starring Matthew Modine. In a nutshell, it's about a happy, mentally challenged man whose intelligence begins to sharpen by way of a scientific experiment. As his mind sharpens, he experiences the deeper beauty of life he couldn't fathom in his previous state. Oh how wonderful! But as he continues to grow smarter and smarter, he becomes disturbed, dissatisfied, bitter, and fearful. All because he begins to understand how life can suck, and that the world isn't always fair and just and right. Eventually, he begins to regress, and becomes desperate to undo what is happening to him but fails. He once again becomes that simple, happy guy, and we are left to ponder which is a better state.

Flowers for Algernon fills the viewer with numerous questions related to happiness, satisfaction, and awareness. Knowing all that we know and having all that we have, how can we possibly be happy? Well, we can take a lesson from another Matthew, a guy who faces social and neurological challenges everyday. Matthew Shumaker is the focus of his mother's book, A Regular Guy: Growing up with Autism.

Laura Shumaker is a great mom! She has raised a son, who by the standards of all the neurotypical folks out there, ought to be hanging his head in sadness lamenting all the ills that life has dumped in his path. Yet he moves toward happiness, rather than away from it, in his own profound way. Although he longs to be a regular guy, he doesn't view his life as a constant struggle. He's proud of what he does and what he knows. He and his mother are an inspiration and a gift to those of us tempted to sit around focusing on what we don't have and what we can't do.

Your book, A Regular Guy: Growing Up with Autism, covers many years. Can you begin by telling us how you first became aware that Matthew was autistic?

We began to suspect something was up with Matthew when he was about two years old. His language development slowed and he became echolalic, meaning he would repeat words we said to him rather than being conversational. At the same time, he developed some odd behaviors. He lined up his toys, and was fascinated with water going down drains and with wheels. When he was three, Santa asked him what he wanted for Christmas and he said, "A drain." Santa said, "A Train? I might be able to get you a train!"

About the same time we noticed his strange language and behaviors, Matthew's neurotypical brother Andy was born. As we watched Andy develop, Matthew's delayed development became glaring.

What was your first reaction to finding out about Matthew's autism, and how did you cope?

I was determined to fix him! So many doctors and psychologists used the term delay so I thought, Well, I'll just help him catch up. Acceptance was a long way away. When Matthew was about ten, I really hit the wall and found a great therapist who helped me get the help I needed such as respite care and mentors for Matthew so that I could enjoy my other two sons and get a rest. My parents and other family members were incredibly supportive and helped me keep my sense of humor.

As Matthew was growing up, what were the toughest hurdles for him? How were you able to help him through these?

As quirky and socially awkward as Matthew was growing up, he CRAVED friendship and it was nearly impossible to help him learn how to find and keep friends. That's when I started hiring friends--helpers and mentors (usually college guys) who could hang out with him and do guy things. Matthew learned a lot from these terrific helpers. But he still needs a lot of social skills training! One of our biggest problems has always been explosive public meltdowns, which picked up steam as Matthew entered adolescence. He's been taking medication that helps him manage his frustration and outbursts--a God send. These days, there are medications that help the lives of autistic individuals with pretty favorable side effect profiles.

Your book shares some of the painful circumstances that Matthew found himself in. It's tough for any parent to watch their child suffer, whether it's emotional or physical. How did you get through these situations, and what did you learn? What did Matthew learn?

I learned patience! And I learned that when I was struggling and feeling embarrassed and humiliated by Matthew's behavior, people were willing to help if they understood what I was dealing with. For example, one time Matthew saw an elderly woman fall down and he ran to her side and started to laugh. Onlookers looked at me like I was a horrible mother until they saw how mortified I was. "I am so sorry," I said, "My son is autistic." I ended up getting more sympathy than the poor woman who took a tumble!

I also learned that those who weren't so nice had their own reasons. Everyone has a story. As my father used to tell me, "Maybe his wife left him today," or "Maybe her dog bit her today." Matthew continues to learn that there are consequences for his behavior. One of his problems is that he (still) thinks he can bother or tease (or even hit) people, and that when they get angry he can just say he's sorry and everything will be forgotten. Unfortunately, that's not how the world works.

Every child is unique and lovable. What are some of the unique things about Matthew that you love?

Matthew has a great sense of humor and the most wonderful, gurgle-filled laugh. He is a tireless worker and will work in the garden from dawn to dusk without complaint. He enjoys helping his friends who are more disabled than him. He loves his family. The thing I love most about Matthew is his face breaking smile when someone is kind to him.

As he was growing up, what were some of the things you did to help Matthew learn, grow, and become the young man he is today?

When I found something that Matthew enjoyed doing (painting, yard work, cooking), I used those activities as rewards and made the most of them for teaching moments. I made sure everyone who cared for him at school and at home did the same. Matthew loved the consistency and learned that he was valued for his talents and abilities. Now he considers himself a landscaping specialist and is very proud of that. I'm sure that will be his livelihood.

Every parent wants their children to be happy and healthy. When faced with a diagnosis such as autism, can parents believe that their child can still live a happy and healthy life?

I'll never forget the day Matthew was interviewed by a social worker. She needed proof that he was disabled enough to receive social security benefits. She said, "I have a cousin who struggles the way you do." Matthew looked shocked. "How do I struggle?" he asked.

Happiness is relative, and it's a challenge to help a person with a communication disorder find it, but it is possible!

I'm guessing that as a child and young adult, you never imagined you would have someone like Matthew in your life. Now that you have raised him, would you trade the experience for something the world deems as 'better?" What has parenting Matthew brought to your personal life? What does it continue to bring?

Having a son like Matthew is a gift, not just for me, but for our whole family. We are so much more tolerant of others--whether they are disabled or not! We appreciate our own good health, and have all developed patience and humor in all areas of life.

At the same time, having a child with autism is a strain. My husband and I are still together (so many couples break under the weight of the years of stress), and joke that we'd have a hard time explaining Matthew on Match.com. It has been stressful for my sons, Andy and John, and while we have planned for the future, I'm sure they worry. It's not a perfect world, but we are luckier than most. We have a great circle of family, friends and helpers who support us.

In your opinion, what is the number one misconception about autism?

The NUMBER ONE misconception is that people with autism are ALL in their own world--that they are all the same. NOT true. Many crave relationships/friendships and just have a very difficult time forming them. Matthew has been telling me lately that he wants to live with a woman and get married (in that order!)

What are the top three things you would like to say to parents who are just discovering that they have an autistic child?

The top three things:

1) EARLY INTERVENTION! Outcomes can be so much better if parents get an early diagnosis and start treatment

2) Don't forget the siblings. Make sure you give them the attention--one on one--that they deserve. I used to leave Matthew with a helper or with my husband and take my sons John and Andy for fun outings--sometimes together, sometimes just one on one. It was wonderful.

3) If you are feeling depressed or are simply getting sick a lot from the stress--get help. See your doctor and get the name of a good psychotherapist. Some people like group therapy. I found one on one psychotherapy more helpful.

AND MOST OF ALL-keep your sense of humor.

Watch the book trailer for A Regular Guy: Growing Up with Autism:

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6527212 March 15, 2009

Sh-t Hits a Homeless Fan: An Aberration Story

... all of our experiences, good and bad, have the power to enrich our lives.

How many of us have personally known homeless folks? If you're like me, you may have passed them on the streets of New York, Nashville, or Los Angeles, looking tired, dirty, and hungry. You may have heard stories about folks fallen prey to sad sack stories of the homeless needing money to visit dying mothers, or to buy food for their kids when all they really wanted was the next high. Let's face it, we're all a little uneasy about offering a helping hand because, unfortunately, we live in a dishonest world.

I'll admit I haven't always been the best judge of character. I was born believing that everyone is good at heart. I've suffered many a disappointment and heartbreak by finding out the hard way how untrue that can be ... including lessons learned about my own nature. With that said, I still hope and believe that every bum, stripper, burnt out wrestler, and dirty, scary looking teen out there isn't inherently bad. I look into their eyes and search for a kernel of good, something deserving of my hope, love, and understanding.

Besides being born naive, I also do this because I can't forget the moments when people (some strangers and some closer to home) have looked at me with disgust and hatred as if to say, "You deserve what you got!"
Maybe I did, and maybe the bum I saw during my recent visit to Times Square did, too, but maybe, just maybe, there are times when a storm catches us, spinning us out of control, and flailing and grasping to steady ourselves, feeling sick and confused, we just do the best damn thing we can. And our best isn't that great by the world's standards, but it's the choice we grab hold of to pull ourselves through. If we're smart and full of heart, sometimes the circumstances we land in can show us the final path out.

Well, I'm pleased to report that parts of our world are still honest. The newest member of Aberration Nation found herself in a destructive relationship with two young daughters, and she made a choice. Margay did the best she could at the time. She got out of a storm but ended up homeless. Then she was hit with a few other aberrations. Like many of us, she was forced to deal with several life-altering situations at once. The shit hit the homeless fan, so to speak. When you read her story I'm sure you'll agree that, under the circumstances, she did a fantastic job of leading her family to a better place. Margay's story shows us that not all who are homeless are heartless. When armed with the right amount of determination, any system can work.

Many of us have more than one aberration. If we're lucky, we get to deal with these one at a time; however, life doesn't usually work that way. At a certain point in your life, you were hit with several overlapping issues. Can you tell us what happened?

Well, after a series of events that started with me losing my job after 9/11 and ended with me living in a homeless shelter with my two young girls, I found myself facing two very frightening events for any mother. My younger daughter and I both fell ill and went through a series of tests and doctor visits and hospitalizations before we discovered what was wrong with us. the strange thing is that the two conditions, while very different, ran parallel to each other, and still do, at times. My daughter was hospitalized first, in February of 2003, with a stomach problem that, we learned at a later time, was linked to a mental health diagnosis that wouldn't come until much later. While she was in the hospital, the symptoms that I had been feeling for at least a month before--numbness, tingling sensations, the inability to hold something in my hand for more than five minutes without suddenly dropping it--culminated in me taking a terrible spill outside of the hospital on my way home one night. Still, I wasn't able to get to my own doctor until my daughter was out of the hospital. Several appointments with three different doctors and a hospitalization later, I was told that what I had was Multiple Sclerosis. That was in the Spring. That June, we received the devastating news that my younger daughter had bipolar disorder. It would be five more years before it was determined that she also had Asperger's Syndrome.

How did you initially cope with all the diagnosis for you and your younger daughter while homeless?

It was difficult because there is no privacy in a shelter. You may have your own room to go to, but still, everyone knew everyone else's business and everyone liked to gossip, or so it seemed. But, in what I now perceive as a life-saving stroke of intuition, when we first entered the shelter, I had arranged with my counselor to get therapists (a separate one for each, another good idea, as it turned out) for my daughters and myself, just to cope with the struggles of being in a shelter. As it turned out, that move saved our sanity. Having someone to talk to, outside of the shelter, about everything that was bothering me, including life at the shelter and all that entailed, was crucial. I think that is what kept me from giving in to despair. That, and visiting my mother as often as I could. She kept me grounded, kept me from giving up by reminding me what I had to lose if I didn't push through this terrible period in my life. Another thing that made it difficult was the debilitating symptoms of my condition. I was tired all the time, my legs were totally numb before the steroid treatments, and I just wanted to sleep my life away. So of course, those were the times when my younger daughter had her worst episodes with the bipolar disorder and often had to go in for psych consults. Eventually, they put her in an A.R.T. program for a few weeks, but in my opinion, that didn't do anything to help her. And through all of this, I was trying to give my older daughter as much stability as I could, under the circumstances. It was the most difficult time in my life.

You're no longer homeless. How were you able to pull yourself out of that situation?

One of the requirements of living in the shelter is that you have to send out applications to every housing authority and low income facility on the packet they provide you. I did so diligently. Still, I was in the shelter for about fourteen months before an opening became available in a family housing project in my old home town. I have since moved on to better circumstances, but I am so grateful that I had that opportunity to start to rebuild my life.

Many people think of homeless people as lazy or mentally deranged. Did you happen to meet other homeless folks, and if so, what did you learn about them? Did your own ideas about homelessness change after being in those shoes yourself and meeting others like yourself?

The shelter that I lived in housed fourteen families in total, so there were a lot of people there and although some might have fit the preconceived notions about the homeless, the majority didn't. The majority were people just like me; people who, through circumstances beyond their control, found themselves in need of a place to stay while they got back on their feet. I have to admit, my own opinion might have been colored by other's perceptions at one point, but I soon learned differently. I met a lot of wonderful people at the shelter who were just victims of a bad turn of luck and wanted to do whatever they could to get beyond it and make a better life for their families. So I guess you could say that my perception did change. Nowadays, whenever anyone makes a derogatory remark about the homeless, I am quick to defend them and to point out that everyone is just one paycheck away from being homeless. This is especially true in today's economy...

How did your younger daughter come to be diagnosed with Asperger's Syndrome?

Well, we had been dealing with the bipolar diagnosis for about five years at that point and she had gone through a series of therapists/psychiatrists in those years. When we moved out of the shelter, I set her up with one who was closer to where we lived and who also was willing to meet with her clients in school. She was with that therapist for three years before the therapist decided to go into private practice and referred us to another therapist within the same agency. After meeting with my daughter for about three months, that therapist, in conjunction with the psychiatrist, presented the diagnosis of Asperger's Syndrome, in addition to the bipolar disorder.

How were you able to cope with this new kink to the family system? Did you find the strength to take deep breaths and properly cope? If so, how did you muster that strength? If not, how did you eventually get a grip on the situation?

This is going to sound odd, but it wasn't a shock to me. I have a friend who is a special education teacher and while we were still living in the shelter, she told me that, upon doing some research of Asperger's in anticipation of a new student she would be having in the Fall, she began to suspect that this was what was ailing my daughter. She even sent me a copy of her research and I had to agree with everything she highlighted. So when the therapist said, "This is what we think we're dealing with," I just nodded and felt an extreme sense of relief. I think I just barely kept myself from shouting, "Finally!" because I suspected, even before my friend sent me the information, that there was still a piece of the puzzle missing. I think my daughter was relieved, too, because we finally had something to call the way she felt in school and social situations. So it was a good thing for us to get that diagnosis. I'm not saying that it has made the situation easier to handle, because it hasn't, but it has helped us to understand it better. Understanding is the beginning of change. As for mustering the strength, I have a wonderful support system and it starts with my mother who keeps me grounded and helps me to make sense of everything.

Multiple Sclerosis is a serious disease, and one that progresses. Are you concerned about the future for your daughters? What is your current philosophy in terms of what types of outcomes you wish for them?

I am always concerned about the outcome for my daughters. Even before I fell ill, I worried even more so because they were abandoned by their father when I decided to end the marriage because of his alcoholism and drug abuse. I worried that I didn't do enough to help their father even though he was beyond what help I could give him at that point. I worried that I had damaged them by denying them their father even though it was his choice not to come around anymore. So of course my concerns magnified when I was diagnosed with M.S. Fortunately for me, I am managing my symptoms and it's in a sort of holding pattern right now, so we're able to plan for the future just as if I wasn't ill. The last thing I want is for either of my daughters to feel like they have to put their lives on hold to care for me. As a matter of fact, my older daughter is in the process of preparing for college next fall and I am preparing to home school her sister because her current situation has become such a toxic situation for her that she developed school phobia and suffers from severe anxiety at the mere thought of having to enter the building. My philosophy is that I want them to prepare for their lives the same way they would if I didn't have M.S. I don't want my condition to deter them from reaching their goals, just as I am not allowing it to deter me from reaching my own. As a result of that philosophy, I achieved one of my major goals in life this past November when I had my first book, Nora's Soul, published.

As I often say, sometimes life sucks--that's the nature of the beast. But life is also beautiful and poignant. Through it all, what are the beautiful things that you have seen? Tell us what gifts have resulted from the struggles that you've lead your family through.

I couldn't agree more! There is so much beauty yet to be seen and enjoyed, whether it's a sunset, the first spring blossom, or the fiery foliage of Fall in New England. (Can you tell where I'm from?) Beauty comes in many forms and perhaps the most beautiful thing that I've witnessed on my current journey is the strengthening of the relationships in my family, particularly between myself and one of my sisters, who also has bipolar disorder. She has given me such great insight into the machinations of my daughter's mind, but she's also encouraged a special relationship with my daughter because she truly understands how my daughter feels - right down to the stomach problems that still plague her. That is the true gift here.

Of course, no one wishes tough times upon themselves. With that said, do you believe it's better to live a perfect life atop a silver platter, or do you believe that the struggles we face ultimately enrich our lives if we allow them to?

Who wants to live on a silver platter? It's cold and everyone looks at you funny. Seriously, though, all of our experiences, good and bad, have the power to enrich our lives. It's all in how we perceive them. And if we don't accept the bad, how can we appreciate the good? The struggles we face are what define us as people and bring out our true nature and teach us how to be better people, if we but listen. Although I don't enjoy some of my circumstances and don't relish what I have to face on a daily basis, I wouldn't want to change the circumstances that have led me to where I am today. Everything I have endured has made me the person I am and has put me in the path of some truly wonderful people that I would not have met otherwise. I do believe that my life has been enriched by my circumstances and I wouldn't want to change that.

Many people are struggled today due to our poor economic situation, among other things. If you could say anything to the world in regard to coping amidst multiple pressures and heartaches, what would that be?

Your worries will crush you if you let them. Don't let them. Take care of yourself and your mental health because if you don't, your body will start to break down and then you will have another issue to deal with. Don't be too proud to seek counseling if you're depressed; shatter those taboos about therapy. A good percentage of people in therapy are people like me who just needed to talk to someone about their situations; just because you see a therapist, it doesn't mean there's something wrong with you. (And keep in mind that people who are mentally ill aren't wrong, either; they're just wired differently.) Even if you don't talk to a therapist, talk to someone. Don't keep it bottled up inside; eventually it will explode and the results can be disastrous. And try not to give in to the mentality that the world is ending because you're facing all of these crises at once. It's not. Have faith in yourself, believe that you are strong enough and capable enough to handle it, and you will get through it. You just have to believe.

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6527212 December 12, 2008

The Girl Can Sing: An Aberration Story

"I am amazed at the strength and beauty of the human spirit."

Let's all admit that having what many consider an imperfect baby after nine long months of pregnancy is every mother's nightmare. Most of us realize that absolutely no love will be lost for our beloved child, but we fear the stress it will place on our families and ourselves. We fear that our child will struggle, and we fear the reality that we will be forced to watch that struggle, incapable of making it all go away. Michelle Incandela has faced that fear, that dreaded aberration, and has won a shining victory.

This is Michelle's six-year-old daughter, Gina Marie Incandela. The girl can sing!

Before reading further, listen here, here, or below:

So where's the nightmare, you ask?

Surprise! Gina also happens to have autism. If you don't know much about autism, this may come as a shock. Gina is her mother, Michelle's, inspiration and hero. Michelle is a hero in her own right, doing whatever she can to help Gina develop her extraordinary talent while also facing the reality of autism. With Michelle's dedication, Gina's following has grown considerably. She frequently sings The National Anthem at major sporting events around the country, has appeared on NBC's Today Show, and has recorded a single, "Dare to Dream."

In addition to a speech and language delays, Gina had many other developmental delays. According to Michelle, Gina lacked age appropriate social skills. She had poor eye contact as well as sensory and feeding issues and more. She had difficulty transitioning and didn't adapt well to new environments. She was often afraid in public and couldn't tolerate noisy places such as theme parks or carnivals. She had odd behaviors such as scratching the floors and walls. She had no imaginary play skills.

When faced with this picture of autism, no one could have imagined what breathtaking beauty and talent lay hidden in the heart and soul of this little girl. It reminds us all that no matter what difficulties we face, we each have something unique to give, and that the people in our lives who seek to identify those hidden pearls within us, hold them out for not only ourselves but the world to see, and help us live a positive-focused life are truly miraculous individuals.

Michelle is now a proud member of the Aberration Nation. She was quite excited to share Gina's story.

Describe autism for us using your own terms? What is it like to have a child with
autism, and how does it impact your day-to-day.

Autism is a very complex and difficult disease to describe. It's a social disorder which affects all children differently. The symptoms vary between children and they vary from day to day. Gina is very high functioning. There are moments and days where I have to remind myself that she has autism. There are other days when I can’t help but be reminded because it is so difficult. Autism is sometimes like having an invisible wall between you and your child. There are days when Gina is very disconnected and difficult to reach.

Gina must deal with a condition that has and will impact her unique place in this world, and yet she also has an incredible talent. How do these two facets of Gina work together? Help us understand the connection?

When Gina was first diagnosed, the doctor was unable to tell us if she would ever speak and whether she would be able to function as an independent person in society. I feel blessed and incredibly lucky that she has progressed the way she has. But, I'm always aware that while she has some incredible talents and abilities, she will always have some symptoms of autism that will make some things more difficult for her. We've tried to focus on the positive and encourage that which comes easy to her and have used that to incorporate lessons in areas which do not come so easy.

Gina loves singing and loves performing. She truly appreciates the fact that her singing makes people happy and loves for people to be proud of her. We do everything we can to encourage the connection she is making with her audience. I think when people are touched by Gina’s voice and hear her story, they are learning about autism. All autistic children are unique in their own way. Gina’s talent and the sharing of her talent is helping to create awareness for all those kids.

She thoroughly enjoys sharing her passion for music with others. She is quite comfortable on stage before thousands of people. Even though she is comfortable, performing requires a certain level of discipline and practice. Gina needs to rehearse and adapt routines to different events. The ability to be flexible and to change routine are areas where Gina has had difficulty. We use her performance practices to work on transitioning to new environments and break from routine. We have noticed that she is slowly becoming more flexible and does not become concerned with changes to routine as she did previously.

Gina’s amazing vocal talent helps to connect her to this world and the people in it. I think it will always serve as a form of expression for her. It is sometimes easier for Gina to express herself through music than through simple speech.

How did Gina come to be diagnosed with autism, and what was your initial reaction? How did you cope?

We took Gina for evaluations when she was 2 years old because she was still not talking. I realized at that point that something was not quite right because when she would try to speak the only sound she could make was “eeeeee”. I thought she needed some some form of speech therapy, but the idea of autism never entered my mind. Looking back, Gina displayed many behaviors that were clearly symptoms of autism. At the time however, I mistook these for behavioral quirks.

There were so many red flags that I missed because I just had no knowledge of this disease. When one of the first therapists evaluated her and informed us that Gina had autistic traits, I didn't take it too seriously. I wasn't devastated and I wasn't in denial. I just didn't think the therapist was correct in her opinion. I was unaware that autistic children can be very intelligent. Gina was able to understand us and she had excellent memory skills and was quite smart. She loved to be held and hugged, she laughed and smiled, and I thought, “This is not a child with autism.”

I ordered several books on autism and sensory deficit disorder. After reading the materials, it was clear to me that Gina was in fact autistic. I was quite shocked but I still didn't feel devastated, and wasn't in denial. I knew the experts were correct. I did however, feel an overwhelming sense of pressure. All the materials suggested that early intervention is the key to success for many of the kids and I felt as though the clock was ticking. The evidence suggested that intensive therapy should be administered between age 2-5 when the brain is most capable of adapting. I wanted Gina enrolled in every possible program and therapy. I can remember visualizing Gina on the other side of a window that was closing and I knew I had to do something to keep the window open, or she would remain on that side forever. I was determined not to let that happen. This was going to be a fight.

I relied on my family heavily during that time. When Gina was diagnosed with autism … it was a diagnosis for our entire family. We coped as a family. We had therapists conduct training sessions at our home to educate us about autism and what we could do to help Gina. We all needed to learn how to model speech, redirect, and deal with any issues that came up appropriately. We made every family outing a form of therapy, whether it was a meal at a restaurant or a trip to an adventure park. Mom, Dad, Grandma, Grandpa, Aunts and Uncles all became part time therapists. We played learning games, and became experts at ignoring negative behavior and reinforcing positive behavior. I think most importantly, we created an environment of consistency between therapists, school and home. We did everything possible to continue what she was learning in her full time day program to her home life.

What do you think are the most common misconceptions about autism?

People are unaware of how broad the autistic spectrum is and that there are many forms of autism. Many think of the movie Rain Man and think all cases of autism are severe and have the same symptoms. In fact, no two people with autism are the same. The disease varies widely with respect to symptoms and severity. There are many autistic people that are quite affectionate and don't mind being touched. Gina is friendly and now very talkative so people assume she can’t have autism. Also, autism does not go away. There are those who think kids receive therapy and are cured. The autistic traits and differences will always be there and they will always need to adjust to a world they perceive differently than most. But, there is hope for children as many who receive therapy improve drastically.

What has Gina's autism and amazing talent taught you about yourself and others? How has it made you better or stronger?

It has taught me that I should not underestimate what my children are capable of, or set limits on what they can accomplish. It has also taught me acceptance for the differences of others, and I am amazed at the strength and beauty of the human spirit. I'm much more appreciative of the many blessings in life and I think it has changed my priorities for the better.

What are the top three things we can do for parents dealing with autism?

1. Offer to babysit. Parents with special needs children are under an exceptional amount of stress. Quiet time is hard to come by. Most people are weary of staying with an autistic child but, frequently the parents are desperate for some outside help.
2. Learn about autism. Become aware of the signs and symptoms and approaches to dealing with autism. Let the parents know that you want to learn about this disease and what you can do to help.
3. Get involved with an autism charity or foundation to raise awareness. Helping to find a cure will help everyone.

If you could say anything to the world about autism, what would it be?

That it is a horrible condition affecting our children in record numbers and we need to work together to find a way to cure it.

To learn more about Gina, please visit her Web site.

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6527212 October 16, 2008

My Son Has Autism: An Aberration Story

"What makes us better people? It's not the uneventful, routine parts of our lives. It's the hardships, challenges, crises, and unexpected surprises that build our character and make us stronger."

If you watched the US presidential debate last night, you heard that autism is on the rise. If you're like me, you don't know a heck of a lot about it. I saw the movies Rain Man, and Mozart and the Whale (one of my favorite movies, by the way), and I've read a few articles in Newsweek about autism over the years. However, I suspect this narrow view provided by the media can't begin to explain what it's like to live with autism day in and day out.

According to the Autism Society of America, autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. Karen, a forty-two-year-old mother of six who lives in Washington State, found herself thrown into the world of autism when her youngest son, Adrian, was born. This gutsy, fantastic mom has volunteered to become the first official member of the Aberration Nation by sharing her experience with us.

Describe autism for us using your own terms. What is it like to have a child with autism, and how does it impact your day-to-day?

There are several aspects of autism. For Adrian, the main challenges are speech delay, obsessive-compulsive behavior, hyperactivity, and anxiety. It’s not just a developmental disorder, it’s psychological. Adrian's autism affects just about every part of our family life. From 18 months to around three-years-old, screaming was his form of communication. I was going out of my mind. I had my husband bring home a pair of ear plugs because I had to take the edge off. The high-pitch actually hurt my ears. With the plugs, I could still hear and help him, while also protecting my ears. As his speech has improved, the screaming has nearly disappeared. However, the meltdowns and head banging have not. His head banging began at 18 months and continues. It hurts to see your child hurt himself and be frustrated with his own inability to communicate. Just like all parents, I want to make it all better.

Because Adrian has such strong obsessive-compulsive behaviors, he likes routine. All toddlers like routine, but for autistic children, it’s imperative. Because Adrian was born into a big family, he isn’t too rigid. We try not to let autism get in our way of family fun. It does restrict us sometimes, but we do our best. For example, for vacations, I try to rent a house or a townhouse so we don’t have to worry about Adrian getting too loud. In a hotel, we would worry that Adrian’s temper tantrums would disturb others. When shopping, I pick up a bag of plain M&M’s, and I’m usually able to accomplish my goals without too much trouble. If he does have a meltdown, I do what any parent with a toddler does. I pick him up and leave the store immediately. People think Adrian is an ordinary toddler having a tantrum. I worry and wonder if he'll still have tantrums at ten. That’s when I’ll get the look.

How did your son come to be diagnosed with autism, and what was your initial reaction? How did you cope and how has your view changed over time?

I knew Adrian was autistic before he was diagnosed. When he was 18 months old I realized he was behind in speech. Then the head banging began. It was violent and disturbing. I knew something wasn't right. We bought Geotrax train sets for Adrian at Christmas. He was too young to set them up, but enjoyed watching the trains. He was obsessed. I had to buy rechargeable batteries because he played with the train set all day long for three days in a row. No toddler plays with one toy for that long. If there is one thing I can say about an autistic child like mine, you will get more than your money’s worth on your toy purchase.

I began researching all the different disorders that matched my son’s behavior. The only thing that made sense to me was autism. I cried and grieved just as if Adrian had died. When I realized something was wrong, the son I thought I would have died. When this happens, all those dreams we as parents have for our children are suddenly gone. During those first few weeks, it’s dark; it feels like it will never get better. Researching and taking advantage of all my resources, such as medical and educational, made me feel like I had some sort of control over autism. The support that the medical and educational system gives parents/siblings is invaluable. Adrian’s family doctor didn't believe autism was the correct diagnosis, but I asked him to send us to Children’s in Seattle for our evaluation. He did without any hesitation.

We went to Children’s, and Adrian was diagnosed. It enlightened our family doctor to the fact that there are so many faces to autism. Adrian is very social and engaging, so it is a surprise to people when they find out he is autistic. If they spent the entire day with Adrian, they would see the speech delay, the obsessive-compulsive behavior, and the temper tantrums. After grieving the loss of what I thought my child’s life would be, it was very easy to accept new and different ideas of what his life would be.

Most of the time, Adrian is a very happy, energetic, funny, and lovable kid. It’s so much fun having him in the mix of this family. Seeing his fast progression gives us hope for his future. He is intelligent. He has mastered most of the things preschoolers learn such as his ABCs, counting to 20, all his shapes, and colors. He will blow you away with his ability to surf the Internet, operate the DVD player, and play video games well beyond his age level.

How has autism shaped your life in general, including your self esteem and your world view? Has it changed your views on motherhood?

Any challenge you face with success will improve your self esteem. I really worry about the world we live in since autism has skyrocketed. One of Adrian’s teachers says the increase is not due to diagnosing children that would not have been in the spectrum ten years ago. Rather, she says the increase includes the moderate to severe autistic children. This increase is frightening. In fact, there are three (including Adrian) autistic children on just one part of my street.

Now, as a mother, I worry more, and I’m more protective. I worry so much about Adrian going to kindergarten. He's been in a special education preschool since age three; however, he's in a class of five or six other kids like him. I worry about kids picking on him in elementary school. I’ve decided I will home school him if this happens. I know I cannot protect Adrian all his life, but if I give him a good start maybe he'll be strong enough to handle any hurtful remarks as a confident young adult.

What do you think are the most common misconceptions about autism?

The most common misconception about autism is that people think autistic children fit into one stereotypical box. The movie Rain Man is their point of reference--or some made-for-TV movie showing a boy rocking in the corner, totally detached from his environment. There are so many differences in autism, we cannot be distracted by the extremes of the spectrum.

What has autism taught you about yourself and others? How has it made you better or stronger?

It has been an epiphany for me. I never would have imagined being the mom of an autistic child. I simply did not think that I would make a good candidate. Most importantly, sense of humor must be maintained at all costs. A good sense of humor makes everything better. It has made me a stronger person. What makes us better people? It's not the uneventful, routine parts of our lives. It's the hardships, challenges, crises, and unexpected surprises that build our character and make us stronger. Adrian has taught me patience most of all because some things come a little slower with him. We went from a 30 word vocabulary with no two words together to sentences, but it took years. Each little milestone is amazing. I really learned to appreciate little accomplishments. For example, we were waiting for an open cashier at the commissary, when Adrian mimicked the electronic voice that says "next please." Adrian said, "Next please," just like a parrot. He had just turned three. Most three-year-old kids are chatting away, but Adrian was just beginning to put two words together.

I'm amazed at the relationship between Adrian and his sisters and brothers. Kids are so good with special needs kids. And I was so proud of my husband and how he had such an open and positive approach to Adrian. There was no negativity. I'm so grateful for that because sometimes parents never get over the loss of the ideas or expectations they have for their children. Not clinging too closely to those expectations for any of our children, special needs or not, is a good lesson to learn.

My husband and I definitely went through the feelings of guilt. We both thought did we do something to cause this. I thought that I didn't take care of myself well enough during the pregnancy. Did I get x-ray exposure at work accidentally? Has the military done something to my husband that affected the chromosomes? Is it hereditary? We went all through that, and it can drive a person crazy. However, we put a stop to that nonsense pretty quickly. For us, it doesn't matter how or why. We love Adrian dearly, and we will deal with everything one day at a time. We will leave the how and why to the researchers, and pray they are able to unlock the mystery.

What are the top three things we can do for parents dealing with autism?

1) Be understanding. If you're shopping and you see a child having a total meltdown, don’t jump to a conclusion that this parent doesn't know how to discipline. Don’t think that the child is undisciplined. First, consider that this child may be autistic.

2) Be supportive. If you have a friend or family member with an autistic child, it would be wonderful to have respite care. If you can't provide it, maybe you can research the area for a respite provider.

3) The most important thing you can do is PRAY. We all need prayer.

If you could say anything to the world about autism, what would it be?

Autistic children are incredibly special people. They just look at the world in a different way.

It’s an honor being a part of their world.

If you'd like to join the Aberration Nation by sharing your story, contact me.

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